I have to remind myself that this is where I am, and this is what I am doing. I am at Grandmother's house, and I am (probably) watching her die. It feels weird to write that, or think that, because, in all honesty, what I am doing is checking my Google Reader for the 1000th time, or blowing things up in a Facebook game, or doing the laundry again, but those things are all part of the larger thing, the filling in time thing. The escaping because it's been three days and all she's eaten is 1/2 a peach and 1/4 of a piece of banana bread. The putting out of your mind that she's been asleep/out of it completely since early Friday morning, and now it is Sunday night and you are listening to her snore from the other room. That "I am deliberately not looking at the bottom right hand corner of my screen to see how long it's been since she's had anything to drink" time needs filling, and thank god for the internet.
Right now, we're in post-crisis, what-the-hell-is-going-to-happen-now mode. On Thursday night, Grandmother ate two helpings of potato salad, and went to bed. Three hours later, she was writhing in pain, a pain in her gut that she couldn't pinpoint, but also couldn't tolerate. After a few more hours of trying in vain to fix it somehow!, I finally convinced her that we should call the hospice people, and the nurse set out from his home, over an hour away: told us which drugs to fish out of her 'comfort kit' and how much to give, and then came to check her out. The drugs did a pretty good job of ending her pain, within an hour, she was resting calmly, sleeping soundly.
That pain: it could be anything, they say. Gas, constipation, just a kink along the way. But they don't think that - you can see that in their faces. "Things could be shutting down", our regular nurse (who is, of course on vacation now, but came in the day before she left to check on Grandmother) gently informs us: "Our job is just to make sure she's as comfortable as possible."
Which feels right, keep her comfortable; but also feels wrong - does that mean keep her drugged? We stopped the pain meds yesterday morning, almost 48 hours ago, because she seemed ok without them: no more moaning or grabbing her abdomen in pain, doubling over. She seemed much improved. But her anxiety level went through the roof, for some reason: she couldn't stop scratching, or flipping from one end of the bed to the other, or yelling at hallucinations of people who were daring to smoke in her room. So we keep giving her the anti-anxiety/delusion meds, because when she gets upset, her breathing, her pulse, her oxygen levels, all of those go crazy (and trying to get her to wear the oxygen is ridiculous when she's like that).
She gets the meds, half of the prescribed dose, really, every 6-8 hours: we've tried twice not to give them, but the result is an hour of her totally freaking out before we give it to her and then an hour afterwards of more freaking out as she starts to wind down.
I can tell Uncle Jack is freaking out - because she was 'fine' (fine for her, fine for her this summer, these past few weeks) just a few days ago, and now she's not eating or drinking, or talking to us with any coherency: did the meds do this? Did we make things worse by trying to help her? The docs say no, that this is what happens sometimes - whatever caused that pain, it's moved beyond that now.
But there's no knowing, and we are both bad with that, with the anxiety that we could be screwing this up so completely. I see Uncle Jack attempting to wake her up again, see if she'll take some Ensure, some Jello, some, something. But she opens her eyes but doesn't really see us, starts talking about getting to graduation and where is her cap?
The hospice people say "you can't do anything wrong, at this point: everything you're doing is the best you can do" but the hospice people are people who know all their patients are dying.
They know about 'making the patient comfortable' and 'keeping the patient calm,' but what do they know about 'my grandmother, who ate 7 meals on Wednesday now won't even take some sips of water'?
Everything we do feels wrong - give her the meds, like the doctor ordered keep her calm, but non-responsive/don't give her the meds to wake her up, watch as her oxygen level falls below 82%, she starts yelling at invisible people and she still won't eat a single thing.
We're trying for the lesser of two evils, I suppose. We're trying.
But there's no right answers here, no cheat sheet: we just want her not to be hurting. We think we've accomplished that, because she's slept through the last three days pretty completely.
We want her to be herself, but can't seem to accomplish that.
We want her to bounce back, for this to be just another example of a time the doctors were wrong about who she is and how strong she fights.
But I want her to be at peace, too, and I know how afraid she is of the forgetting things, how much emotional turmoil she lives through when she thinks about her boys being lost, being little and alone without her.
And, in all honestly, it doesn't matter at all what we want: we just do what we/they/all of us think is best, cross our fingers, and hope it works out.
Only I don't know what to hope for here, and that's a harsh feeling to live with.
So sometimes, sitting here doing the TV Guide crossword puzzle and frowning over the fact that Uncle Jack and I both forgot to eat lunch today, I hear her snort, or see her sit up and reposition herself, and I think: How is it possible that I am sitting here, doing this?
What am I doing exactly?
I'm doing a lot of hand holding and whispering reassuring words, of coaxing her awake, or humming her quietly to sleep*. There's sitting with your hand under her head for the 35 minutes until she's totally asleep, so that your whole arm is asleep and numb as well, and you have to dig it out with your other hand. There's changing her, and the sheets, after an accident, and realizing it's so not a big deal (except for the lifting: god help me, I can't lift her, and I don't know why I keep trying - core muscles are so mad at me, and the fibro flare is ridiculous!). There's letting her sit on your lap when she attempts to get to the bathroom, but runs out of energy along the way, knowing full well that an accident could happen, and not caring in the slightest. There's a lot of sitting around and waiting, measuring meds, looking at the clock, listening for any sounds of alertness or agitation or... anything.
Right now, she's still snoring. And I'm still avoiding the clock, keeping my fingers crossed that when the 6 hour med mark is crossed, this time she'll be ok, and she won't need that next dose. She'll ask for corn on the cob, and we'll give it to her, fresh-picked yesterday morning, from the farmer's market.
Until then, I guess I just wait.
*When the kids were babies I made the each a "quiet music" CD (No-Longer-Youngest Nephew is old enough that his was a cassette tape) that we listened to when it was nap time. Lil Girl's CD has been running through my mind on repeat all weekend, so Grandmother has been treated to some weird versions of "Hushabye Mountain", "Two Sleepy People" and "When She Loved Me".
Sunday, August 26, 2012
Sunday, August 19, 2012
In Our Night Kitchen
I feel like when you're arguing with a person with dementia (and it just may be my person with dementia, I don't know) that you are arguing with all the people they ever were, only each is closer to the surface than ever: When she's battling with me over food (again) because she can't remember the last time she ate (even though it was less than three hours ago), I can sort of see her in so many stages of her life:
She's like a newborn, who's crying because it is hungry, and doesn't know how to stop that feeling. And like a two year old, who wants to eat something, but when you ask what, can only say "Food!" and shakes her head in derision at every option you offer. And like a teenager who manages to notch the arrow most closely to your heart while being completely absurd at the same time: "You want me to starve because you want to get rid of me, don't you?" And like a wife who has never lost an argument ("Well, you just have an answer for everything, don't you?"); and a mother who brooks no nonsense ("If I've told you once that I can't eat eggs because of my cholesterol, I must have told you a hundred times: why can't you remember that simple fact???"); and the completely independent human being she is used to being ("Well, I'll just make it myself then!").
Plus you get the added bonuses of the paranoia ("You're trying to drive me crazy by changing all the clocks and writing down food that I haven't eaten"), and the confusion that comes from not being able to hear half of the things you're saying, and creating the other half out of whole cloth (I suggest toast with jam and butter, she hears peanut butter and jelly, which she hates with a passion and goes on a rant about how I only offer her things she'd never eat), but those are just the extra fun-features.
And of course, none of that is helpful, because I can't get her to listen to reason (I have listed off every single item of food in the house; I have shown you the dishes from your last meal, which still haven't been washed; I have offered to order in anything her heart desires) or to just eat a goddamn banana or something. But I'm sitting here, hoping that this time when she wakes up she'll be somehow more reasonable, trying to regain my patience before our next round (and seeing it as a fight isn't really going to help you regain your patience, now is it, NTE?), and trying to remember that she's acting like this because of her disease, not because she hates me (which is how she is looking at me) or because she's trying to be difficult (which is how it feels when she's got a comeback to everyDAMNthing I suggest), but because she can't help it.
Now if only she weren't the single most stubborn person in the universe before she got sick, that might be a little bit more manageable.
She's like a newborn, who's crying because it is hungry, and doesn't know how to stop that feeling. And like a two year old, who wants to eat something, but when you ask what, can only say "Food!" and shakes her head in derision at every option you offer. And like a teenager who manages to notch the arrow most closely to your heart while being completely absurd at the same time: "You want me to starve because you want to get rid of me, don't you?" And like a wife who has never lost an argument ("Well, you just have an answer for everything, don't you?"); and a mother who brooks no nonsense ("If I've told you once that I can't eat eggs because of my cholesterol, I must have told you a hundred times: why can't you remember that simple fact???"); and the completely independent human being she is used to being ("Well, I'll just make it myself then!").
Plus you get the added bonuses of the paranoia ("You're trying to drive me crazy by changing all the clocks and writing down food that I haven't eaten"), and the confusion that comes from not being able to hear half of the things you're saying, and creating the other half out of whole cloth (I suggest toast with jam and butter, she hears peanut butter and jelly, which she hates with a passion and goes on a rant about how I only offer her things she'd never eat), but those are just the extra fun-features.
And of course, none of that is helpful, because I can't get her to listen to reason (I have listed off every single item of food in the house; I have shown you the dishes from your last meal, which still haven't been washed; I have offered to order in anything her heart desires) or to just eat a goddamn banana or something. But I'm sitting here, hoping that this time when she wakes up she'll be somehow more reasonable, trying to regain my patience before our next round (and seeing it as a fight isn't really going to help you regain your patience, now is it, NTE?), and trying to remember that she's acting like this because of her disease, not because she hates me (which is how she is looking at me) or because she's trying to be difficult (which is how it feels when she's got a comeback to everyDAMNthing I suggest), but because she can't help it.
Now if only she weren't the single most stubborn person in the universe before she got sick, that might be a little bit more manageable.
Sunday, August 05, 2012
Hell Yeah
"Sometimes, the universe just aims for you and there’s nothing you can do except curl into a ball and keep breathing. I don’t like that. I do not like waiting for the next bus to come around the corner, I want to chase down the bus that hit me, drag the Universe out of the driver’s seat, and say, “Listen you sadistic prick, I have had it up to here with you using me for target practice, and if you come near me again, I’m going to slash your fucking tires and then come after your throat. And my knife is swift, Sparky, so next time you get behind the wheel, avoid me like the black hole of rage and fear I have become.”Jenny Crusie, Bring It On
Wednesday, August 01, 2012
Another hellish day, but at least I have someone to talk to
Earlier today, my uncle passed away from cancer - only the exact timing of it was a surprise, but it's still been... I don't even know, just horrible. And my grandmother, who does not know, obviously knows something is up and is tantruming right and left, while my uncle, who's grieving the loss of his 5th brother in the past decade or so, has about zero patience left over for her, so ... it's been a challenge. The far away cousin I am closest to messaged me and said "Sending my love - hope you are all ok", and this well... this is what came out.
Honestly, Two Shoes? It's a goddamn mess here.
Like, you know how I don't really curse, and all my truck driver-mouthed sisters make fun of me? Well if they could hear the inside of my brain right now, they'd be so proud. (And shocked, because I happen to have an extensive foreign vocabulary :) )
I don't really know anything, except that he had the last rites this morning, Katie called to see if Gmother or UJ would like to try to talk to him via the speaker phone, and gmother is in 1967 or somewhere, trying to find her "lost boys" so I just gave the phone to UJ and left him with some privacy. He was going to try to drive down, but she called back less than 1/2 hour later and said he was gone. She sounded... well: you and I both have intimate experience with how she sounded, and I just wanted to crawl through the phone and tell her .... I don't know what, except how much I'm so damn sorry. And then we called the social worker, and the priest, who both said: don't tell grandmother, at least not today.
Today was a bad day to begin with, and if we tried to tell her, well: we'd be the cruel monsters she sometimes thinks UJ is when he tells her any of the other true things about her boys. We always go with the "they're safe, they're where they need to be" track that the hospice tells us to follow, but some days she knows that's not true, she knows so many of them are gone, but to her they are both gone and still little boys, and so she is not buying what we're selling, and maybe it's the phone constantly ringing or my face, or UJ's posture, but she ain't buying it today. She knows something is off, and so down the wormhole we go, trying to anticipate what bomb will go off in her mind next. Today the refrigerator was smoking, UJ had abandoned her, the lost boys purposely ran away because she isn't a part of this family anymore... just: she's not herself.
And I promised myself that I would wait, and vent on you when your vacation was over, because ... well, VACATION. And I don't want to see her like this, and I hate having to tell other people that she's like this, because she'd be fucking pissed. I mean: you know. You know.
So I figured, well, I'll just be avoid-ish and vague and hope that things get better (because I've been doing - shocker - a hell of a lot of research, and I think/hope I can figure out at least ways to make this a little less hellish for all of us) and by the time we talked next, it'd be calmer and less horrible, and Grandmother wouldn't curse at me or ask me to call 911 to find invisible children, but ... things keep going wrong, and here we are, and now she's lost a real boy, and I can't tell her, and my heart is just broken for all of us.
It's a heart broken day, and they're not all like this: I promise. Some days she's herself and I get to hear stories about how my father was told by some idiot down the street to stop climbing a tree in the park and came back with "It's not your tree, so mind your business." and even though grandmother expects me to be shocked by that, and be on the adult's side, I think he was right, and secretly smile.
Some days we spend all night emptying drawers and refilling them, looking for some small part of her life that she can't describe to me, but she knows is there somewhere... so we search. That's one of the rare times I feel like I'm actually accomplishing something here: because UJ does not have the patience for those hours of searching, let me tell you, and I don't mind if we go through the drawer 19 times (has he never built with blocks and a 18 month old before: dump and fill, dump and fill)
And other days are like today, which is worse than normal because a)obviously, Uncle Kevin and b)during my research I found out that the meds the doc has given us for her anxiety might actually be making other symptoms worse, so we can't use it anymore. So let's have the MOST ANXIOUS DAY EVER (for all three of us) and no calming down meds for grandmother, and neither uj or I can drink. (Send me special brownies ;) ~ we already stress ate 3 dozen cookies since yesterday morning.) So, hence: I am sorry to ruin your vacation.
But I can picture you reading this, and listening to me, and it does my heart good just to have it said (because I've been wanting to call, but honestly, getting on the phone in private here is harder than getting home to shower - and I haven't done that in over a week, so that shows that), to know that, even though it'll break your heart too (and I'm so damn sorry that I have to be the one to do that), I can feel you, loving us, from far away. I'm going to take all those hugs, and send some back to you, and NOT erase the whole damn thing, because you're on vacation, even though I feel kind of like I should. Cuz I love you, and I really appreciate the shoulder, and I need it a lot today.
Hugs to your boys, I suppose I'll be seeing you soon, although ... i don't know how that's going to work because well... i haven't thought that far ahead yet. But anyways... I love you. Thanks for listening . Miss you much, Love, Me
Friday, July 20, 2012
I have a pill stuck in my throat, in that awkward way that happens every
once in a while. I sip from my water and realize I'm holding back
tears... it isn't just a pill that's stuck there, but all of my
feelings.
I've just come from yet another late night heart to heart with the woman my grandmother sometimes has become. This woman is sad: not just sad, but heartbroken, morose, devastated. She has lost her children, and doesn't know why. She's alone in a house she doesn't recognize with people who used to be her family and now feel "worse than strangers, because they're SUPPOSED to love me." Her long-deceased siblings visit her often, but instead of comfort, they taunt her with their silences at the atrocities she's faced: she is sure someone has stolen her two little boys. Not just stolen them, but given them away, without her having a say so, without so much as an explanation... and it's those supposed loved ones who allowed it - perhaps enabled it - to happen, and she can't forgive them for that.
As one hour slips into two, we're still at a stalemate: I tell her that those of us who love her are out here in the dark searching for her with flashlights, unable to reach her, but continuously shining the light of our love in her direction, hoping against hope that she feels it, however briefly, and knows that she is safe. "They aren't searching for me anymore," she responds, "They've all found other people to love, and I guess it's only natural that there would have to be a loser, but I'm not glad it's me."
I would do anything for you, I tell her. All of us would. "There is an empty doorbell that says you are lying," she tells me. "An old TV I can't see that sits in the living room mocking me, stairs that I can't climb yet have no lift like I've asked for repeatedly, and my boys are gone. All of that shows me more than the words you say."
I can't argue with the last - the boys are missing, and no matter how I try to word it, to make her understand, it is always our fault that they are gone, if not by active trickery, then at the very least through passively allowing it to occur. I can't even defend the defensible position - that the television isn't broken, it's her eyes - because she already knows the facts of that, but it doesn't matter. As to the others, I can't help but agree: there is no reason that my uncle's aversion to the 'mess'' of the stair lift should outweigh her sense of dignity and ability to shower regularly, but it does. (I know that part of his reluctance is due to his thinking that this is not a permanent state of health for my grandmother, or that the life would be just as dangerous to her as the stairs, but I'm not sure I agree.) And the silent doorbell (/telephone) is a two sided coin - there are some who are close enough, yet do (in my mind) too little, and some who are too far away to do much. Then there are others who want to help, but know that too many people - and at times 1 extra person is too many people - amps up her anxiety and backfires instead of helping. So, it's complicated, but she can't understand that right now.
Right now, all she knows is that it's three o'clock in the morning, and she can't sleep. Because she's never been "more alone in her life", even though I am sitting right there. Even though I am always sitting right there.
If I leave for the afternoon to take a shower, I leave 70-80% of my brain here, spinning about what might happen while I am gone, and who I will find when I come back. If she's in a good way when I'm leaving, I hate to go because she might not be alert and focused when I return; if she's having a bad day, I hate to leave because sometimes I'm the only one who can get through to her. When I come home I might find the lady I've always known, who asks me about the people I've seen while I was gone and seems glad to know that the shower helped my neck so much, or I could find the silent starer, who slides little digs in about how "I thought you'd forgotten I'd existed" because I've been AWOL for less than 10 hours.
Back in college, I was going home every weekend out of sheer exhaustion - it was one of the concessions I might to my chronic illnesses, because the dorm would be too noisy, that I'd go home to sleep and shower every weekend, and come back on Sunday nights. During my miserable freshman year, the year I was so depressed I nearly dropped out, when my roommate and I could not have been more poorly matched and my classes were overwhelming, and I couldn't figure out how you're supposed to make friends as an adult (still don't get this, btw), somewhere around Sunday afternoon, I would start to get a feeling in the pit of my stomach that would make me slightly nauseous. It would build during the hours I spent getting ready to go back, and all of the stress I'd washed away in the shower would come crushing back down on me. That anxiety, that sense of dread, was one of the worst feelings I've ever experienced - it was more than just 'back to work blues', it was utter despair some days - but I would face it and get on with my week, and my work, no matter that all I wanted to do was to give up, tell my mother to turn the car around and go home.
I feel some of that same anxious dread so often now, and find myself wishing that I could just walk (RUN) away and let things happen as they will, without me. Why do I have to be here, listening to her heartbreak, while she breaks my heart? Why do I have to be the one she can spill out all her worries too, when I don't have any of the solutions she's looking for? Why does no one else see that her feet need to be up, that her hearing aids aren't in, that she's mixed up and you're just confusing her more by giving her all those options? How can I sit here and be both her "most trusted helper/the best nurse on this ward" and "obviously plotting against me, or at the very least not telling the whole truth"? Why are all the people I need to support me actively making this harder?
I just want to disappear, but ... I can't. At the same time I want to be the person she can depend on, I feel completely undependable, as if I'm trying to be a pillar, but I'm standing on pillows. I don't feel up to the task, definitely. All the areas I am most confident in - I can organize these appointments and medications and nurses visits and bath times like crazy, y'all! - feel inadequate, because there's so much that I can't do. On a good day, I can listen and empathize and search for non-existent prayer cards for three hours, and on a bad day, I find myself thinking that it's a good thing I'm not a parent yet, because this getting up at 3 in the morning to make the first of three breakfasts or balance the checkbook for the 24th time this week is bullshit. On a good day, we sit on the porch, and even though she's not herself, the pure unedited joy I can read in her face as the cool breeze finally reaches us is more reward than I could ever ask for; on a bad day, I mutter sarcastic answers under my breath to every little dig and jibe she aims at me, even though I know that whispering and sarcasm just antagonize her. (I do try to keep it under my breath, but really, sometimes you just want to be like: Yes, yes Grandmother, I do want to "end our relationship", which you can obviously see by the way I'm making you yet another cup of tea, because you completely ignored the first two I brewed for you and let them get cold. That's why I've given up showering more than twice a week during the hottest days of the decade, because I "hate" you so much. Grumble grumble grumble.)
There are no answers to be found here, really: she's not going to magically wake up tomorrow and remember that we've always and only done our best for her because we love her, and I'm not magically going to be able to ignore her little poison darts when they're aimed at my heart. It's not ok, but it is what is. It is our reality right now, and I'm going to live through it. (Now I just have to keep repeating that to myself until I believe it.)
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On a more positive note, I can not thank you all enough for your kind words on my previous post (or any of the posts concerning our current situation, for that matter): I think it's obvious that I am having a hard time here, and I hate to be continuously on and on about it, but it's pretty much all I have time to think about right now. I am humbled by and so grateful for all of your supportive comments ~ knowing that so many of you have been through this/similar issues is both tragic and heartening: I am sorry for you and your loved ones, but so glad that I'm not on my own here. Whenever I think about closing down this blog, because, let's face it, I don't utilize it as much as I could/should, and sometimes it's a pain in the ass to even think about posting, I always come back to this: so many of you are here when I need you, when (almost) no one else is. Whenever I think that I am most alone, when I am sure that no one at all will understand a word I am saying, you somehow manage to make me feel as if the things I say matter to you, as if I am part of the 'real world' again. As if all the crazy I am feeling might somehow be a little bit normal. So, thanks for that. (And all of your suggestions: you can be sure I am taking them all to heart.) A thousand thanks, NTE
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I've just come from yet another late night heart to heart with the woman my grandmother sometimes has become. This woman is sad: not just sad, but heartbroken, morose, devastated. She has lost her children, and doesn't know why. She's alone in a house she doesn't recognize with people who used to be her family and now feel "worse than strangers, because they're SUPPOSED to love me." Her long-deceased siblings visit her often, but instead of comfort, they taunt her with their silences at the atrocities she's faced: she is sure someone has stolen her two little boys. Not just stolen them, but given them away, without her having a say so, without so much as an explanation... and it's those supposed loved ones who allowed it - perhaps enabled it - to happen, and she can't forgive them for that.
As one hour slips into two, we're still at a stalemate: I tell her that those of us who love her are out here in the dark searching for her with flashlights, unable to reach her, but continuously shining the light of our love in her direction, hoping against hope that she feels it, however briefly, and knows that she is safe. "They aren't searching for me anymore," she responds, "They've all found other people to love, and I guess it's only natural that there would have to be a loser, but I'm not glad it's me."
I would do anything for you, I tell her. All of us would. "There is an empty doorbell that says you are lying," she tells me. "An old TV I can't see that sits in the living room mocking me, stairs that I can't climb yet have no lift like I've asked for repeatedly, and my boys are gone. All of that shows me more than the words you say."
I can't argue with the last - the boys are missing, and no matter how I try to word it, to make her understand, it is always our fault that they are gone, if not by active trickery, then at the very least through passively allowing it to occur. I can't even defend the defensible position - that the television isn't broken, it's her eyes - because she already knows the facts of that, but it doesn't matter. As to the others, I can't help but agree: there is no reason that my uncle's aversion to the 'mess'' of the stair lift should outweigh her sense of dignity and ability to shower regularly, but it does. (I know that part of his reluctance is due to his thinking that this is not a permanent state of health for my grandmother, or that the life would be just as dangerous to her as the stairs, but I'm not sure I agree.) And the silent doorbell (/telephone) is a two sided coin - there are some who are close enough, yet do (in my mind) too little, and some who are too far away to do much. Then there are others who want to help, but know that too many people - and at times 1 extra person is too many people - amps up her anxiety and backfires instead of helping. So, it's complicated, but she can't understand that right now.
Right now, all she knows is that it's three o'clock in the morning, and she can't sleep. Because she's never been "more alone in her life", even though I am sitting right there. Even though I am always sitting right there.
If I leave for the afternoon to take a shower, I leave 70-80% of my brain here, spinning about what might happen while I am gone, and who I will find when I come back. If she's in a good way when I'm leaving, I hate to go because she might not be alert and focused when I return; if she's having a bad day, I hate to leave because sometimes I'm the only one who can get through to her. When I come home I might find the lady I've always known, who asks me about the people I've seen while I was gone and seems glad to know that the shower helped my neck so much, or I could find the silent starer, who slides little digs in about how "I thought you'd forgotten I'd existed" because I've been AWOL for less than 10 hours.
Back in college, I was going home every weekend out of sheer exhaustion - it was one of the concessions I might to my chronic illnesses, because the dorm would be too noisy, that I'd go home to sleep and shower every weekend, and come back on Sunday nights. During my miserable freshman year, the year I was so depressed I nearly dropped out, when my roommate and I could not have been more poorly matched and my classes were overwhelming, and I couldn't figure out how you're supposed to make friends as an adult (still don't get this, btw), somewhere around Sunday afternoon, I would start to get a feeling in the pit of my stomach that would make me slightly nauseous. It would build during the hours I spent getting ready to go back, and all of the stress I'd washed away in the shower would come crushing back down on me. That anxiety, that sense of dread, was one of the worst feelings I've ever experienced - it was more than just 'back to work blues', it was utter despair some days - but I would face it and get on with my week, and my work, no matter that all I wanted to do was to give up, tell my mother to turn the car around and go home.
I feel some of that same anxious dread so often now, and find myself wishing that I could just walk (RUN) away and let things happen as they will, without me. Why do I have to be here, listening to her heartbreak, while she breaks my heart? Why do I have to be the one she can spill out all her worries too, when I don't have any of the solutions she's looking for? Why does no one else see that her feet need to be up, that her hearing aids aren't in, that she's mixed up and you're just confusing her more by giving her all those options? How can I sit here and be both her "most trusted helper/the best nurse on this ward" and "obviously plotting against me, or at the very least not telling the whole truth"? Why are all the people I need to support me actively making this harder?
I just want to disappear, but ... I can't. At the same time I want to be the person she can depend on, I feel completely undependable, as if I'm trying to be a pillar, but I'm standing on pillows. I don't feel up to the task, definitely. All the areas I am most confident in - I can organize these appointments and medications and nurses visits and bath times like crazy, y'all! - feel inadequate, because there's so much that I can't do. On a good day, I can listen and empathize and search for non-existent prayer cards for three hours, and on a bad day, I find myself thinking that it's a good thing I'm not a parent yet, because this getting up at 3 in the morning to make the first of three breakfasts or balance the checkbook for the 24th time this week is bullshit. On a good day, we sit on the porch, and even though she's not herself, the pure unedited joy I can read in her face as the cool breeze finally reaches us is more reward than I could ever ask for; on a bad day, I mutter sarcastic answers under my breath to every little dig and jibe she aims at me, even though I know that whispering and sarcasm just antagonize her. (I do try to keep it under my breath, but really, sometimes you just want to be like: Yes, yes Grandmother, I do want to "end our relationship", which you can obviously see by the way I'm making you yet another cup of tea, because you completely ignored the first two I brewed for you and let them get cold. That's why I've given up showering more than twice a week during the hottest days of the decade, because I "hate" you so much. Grumble grumble grumble.)
There are no answers to be found here, really: she's not going to magically wake up tomorrow and remember that we've always and only done our best for her because we love her, and I'm not magically going to be able to ignore her little poison darts when they're aimed at my heart. It's not ok, but it is what is. It is our reality right now, and I'm going to live through it. (Now I just have to keep repeating that to myself until I believe it.)
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On a more positive note, I can not thank you all enough for your kind words on my previous post (or any of the posts concerning our current situation, for that matter): I think it's obvious that I am having a hard time here, and I hate to be continuously on and on about it, but it's pretty much all I have time to think about right now. I am humbled by and so grateful for all of your supportive comments ~ knowing that so many of you have been through this/similar issues is both tragic and heartening: I am sorry for you and your loved ones, but so glad that I'm not on my own here. Whenever I think about closing down this blog, because, let's face it, I don't utilize it as much as I could/should, and sometimes it's a pain in the ass to even think about posting, I always come back to this: so many of you are here when I need you, when (almost) no one else is. Whenever I think that I am most alone, when I am sure that no one at all will understand a word I am saying, you somehow manage to make me feel as if the things I say matter to you, as if I am part of the 'real world' again. As if all the crazy I am feeling might somehow be a little bit normal. So, thanks for that. (And all of your suggestions: you can be sure I am taking them all to heart.) A thousand thanks, NTE
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Thursday, July 12, 2012
Damn, this is hard.
Things are so much better - and so much worse - than I expected. I don't know what I expected, really: all of the literature the hospice people give you sort of makes it seem like there's a straight line of decline to follow right through their showing up until she passes away. But that's not the way it's going at all, which is excellent, of course, because she's still here, and not excellent, of course, because sometimes she suffers so much.
The hospice people say (over and over again) that their goal is to ease her suffering and to support us. I know they are trying, but I'm not always sure they're meeting those goals. Of major import to me is her suffering - if it were from physical pain (and they warn us that that is likely still to come), it'd be easy to address*, as they've given us all sorts of happy drugs and the lessons on how to administer them should she want them.** But it's a mental sort of suffering that's affecting her, and all of us, the most.
She forgets who I am now. Just a few weeks ago that would have been unthinkable. Now I am my mother, my 2nd cousin, her sister, my sister, her daughter, the nurse, the hotel concierge, a random office worker, the social worker, the hair dresser, the lady who comes to give her a bath. Some of these are quite reasonable - I have a similar look/manner as my mom, I have given her a bath in the past, etc - but if you're telling the woman in front of you (who is sitting in a wheelchair) about your granddaughter who is in a wheelchair, and who visits you sometimes, then all is not well.
Worse than the forgetting though, is the paranoia. The feeling that we're teaming up against her, and the repercussions of that. This morning she woke with the idea that we were going to her mother's funeral. Her mother has been buried for 90 years, and while they say to agree as much as possible, I couldn't very well take her to New Jersey for a funeral that occurred 6 decades before I was born. I can see now, with hindsight, that I should have just kept going with it, for as long as possible, but sometimes that comes back to bite me in the ass too, so I don't know where to put my feet, most of the time. (Also, in my defense, it was 4:30 in the morning. And I had gotten less than 1 hour total of sleep since 4:30 the previous morning.)
Usually, I will just play along until it is either time for her to nap (which is every hour or two, most often) - in which case she may forget what her previous plan for the day was - or distract her enough that we can move on to other things. But this morning, distraction accomplished nothing - she wanted to clean the house for the post-funeral visitors (at 4:30 am), not eat breakfast or have coffee. After having to tell her no for numerous activities that she claimed to want to do next - stuff she or I can not physically accomplish, like climbing the stairs or hanging tablecloths out on the line - I could tell I was getting into trouble. Worse, she showed no signs of slowing down or needing a nap, and now there were only two hours for her to get to her actual plan for the day - a necessary doctor's appointment. (And it takes that long, with breaks built in, for her to get ready for things.)
So now I have to tell her that she's got to get dressed, and that she has to go to the doctor's.
"Do you think I'd choose a doctor over my own mother??"
"No Ma'am, but that mass isn't this morning - we don't have any mass this morning to go to."
Cue horrified look, as if I have just personally, stripped her dead mother bare for the world to see. "She's in the coffin two rooms away, and I'm supposed to just leave her there?"
"But she's not in the coffin, Grandmother, at least not in the house, right now. She died a long time ago, and was buried then. She's not here right now, so we're not disrespecting her."
"Do you take pleasure in reminding me that I've been motherless for most of my life. Do you think I don't know that? "
"No, ma'am. I'm just saying that it's ok to get ready for your appointment, because... that's what we're doing today."
"Well, it's not what I'm doing."
This back and forth only got worse, as every sentence was another foot in my mouth. Eventually she was sitting and (quite pathetically) trying to straighten out her bed with her one injured arm and her other hand full with her cane, on a footstool next to the bed.
"Here, Grandmother, let me help you up from there: it's too low to work from."
"That's not the only thing that's low today."
That's the thing: my Grandmother has a viper's tongue, when provoked. And I've only done it twice in my life, really, and both of those times have been in the past week, and have occurred when I was trying to be helpful.
The other night's episode had me fleeing to the front porch so I could burst in to tears, call my mother, and burst into tears again. She was upset with my uncle (who is her main caretaker, and thus, her main target when paranoia or delusions strike), and was convinced that he had sold her two youngest children away.
This is a common theme when she's delusional - the hospice people told us that usually, people see their departed loved ones and it's all "hooray and glorious and sweetly sentimental". Not for my grandmother. For her, it's people who've been dead for 70 years showing up and standing in the corner, refusing to speak to her. It's little boys (she had seven) disappearing and nobody helping her find them. It's wondering over and over and over again why you can't find this one or that one, or why they would walk through the house without saying anything to you.
So heartfelt reunions, she's had a few, but mostly, her hallucinations are upsetting to her, and leave her stressed and confused. As happened the other night, when her delusions and viperous tongue reached out and spit at me for the first time.
She was against my uncle, which means he can't even go in the room to give her her meds without raising her blood pressure (which, since she has congestive heart failure, is not optimal). So I went in to get her dinner dishes, and she starts telling me that I need to tell her the truth. (Here's the thing: telling her the truth is actually the WORST thing to do, all the professionals warn me.) And when I say that I don't know what she's talking about, I am all of the sudden 'picking sides' and 'making living here unbearable.'
'Grandmother: I don't know what you need, tell me how to help you.'
'I just hope your conscience is clear, NTE, because if you think about it, there are some horrible things happening here, and I hope you're not a party to them.'
'No, ma'am. I'm not a party to anything I'm ashamed of. I'm only here to help you, if I can.'
'I hope that's true.'
20 minutes later, as I'm giving her a kiss goodnight... 'You know Judas kissed Jesus before he betrayed him, right?'
So her memory may not be up to snuff, but her pointed tongue is still as finely sharpened as ever. (And all my aunts and uncles, and the sister who lived here as a teenager, are feeling just the teensiest bit justified by my experiences: not that they want her to hurt my feelings, but "I told you she wasn't always so sweet" has been spoken more than once.)
Hospice doesn't prepare you for decapitation or slow bleeding, however. They just say things like "try to play along, if you can", and "she shouldn't be upset, if possible" without realizing that those are two contradictory pieces of advice. And while I know she doesn't really, in the scheme of things and our relationship and lifespan together, believe that I am a Judas who won't let her go to her own mother's funeral... she believes it right then, and it's hard for me not to take that personally. The only thing that kept me from running home the other day after the Judas comment was that I knew she wouldn't remember it when she woke up, which was less than an hour later, which I was completely right about, but I must have suffered as much as Judas waiting for the cock to crow, knowing I was hurting someone I loved, even if I didn't mean to.
Damn this is hard.
*and what an irony that is to me, the chronic pain patient: if you're dying, we can ease your physical pain; if you're not, you're pretty much out of luck. Good system, everybody!
**Irony part 2: she hates taking medicine, and will not take it at the first sign of pain. Or the second. Or until a part of her anatomy is in danger of falling off.
The hospice people say (over and over again) that their goal is to ease her suffering and to support us. I know they are trying, but I'm not always sure they're meeting those goals. Of major import to me is her suffering - if it were from physical pain (and they warn us that that is likely still to come), it'd be easy to address*, as they've given us all sorts of happy drugs and the lessons on how to administer them should she want them.** But it's a mental sort of suffering that's affecting her, and all of us, the most.
She forgets who I am now. Just a few weeks ago that would have been unthinkable. Now I am my mother, my 2nd cousin, her sister, my sister, her daughter, the nurse, the hotel concierge, a random office worker, the social worker, the hair dresser, the lady who comes to give her a bath. Some of these are quite reasonable - I have a similar look/manner as my mom, I have given her a bath in the past, etc - but if you're telling the woman in front of you (who is sitting in a wheelchair) about your granddaughter who is in a wheelchair, and who visits you sometimes, then all is not well.
Worse than the forgetting though, is the paranoia. The feeling that we're teaming up against her, and the repercussions of that. This morning she woke with the idea that we were going to her mother's funeral. Her mother has been buried for 90 years, and while they say to agree as much as possible, I couldn't very well take her to New Jersey for a funeral that occurred 6 decades before I was born. I can see now, with hindsight, that I should have just kept going with it, for as long as possible, but sometimes that comes back to bite me in the ass too, so I don't know where to put my feet, most of the time. (Also, in my defense, it was 4:30 in the morning. And I had gotten less than 1 hour total of sleep since 4:30 the previous morning.)
Usually, I will just play along until it is either time for her to nap (which is every hour or two, most often) - in which case she may forget what her previous plan for the day was - or distract her enough that we can move on to other things. But this morning, distraction accomplished nothing - she wanted to clean the house for the post-funeral visitors (at 4:30 am), not eat breakfast or have coffee. After having to tell her no for numerous activities that she claimed to want to do next - stuff she or I can not physically accomplish, like climbing the stairs or hanging tablecloths out on the line - I could tell I was getting into trouble. Worse, she showed no signs of slowing down or needing a nap, and now there were only two hours for her to get to her actual plan for the day - a necessary doctor's appointment. (And it takes that long, with breaks built in, for her to get ready for things.)
So now I have to tell her that she's got to get dressed, and that she has to go to the doctor's.
"Do you think I'd choose a doctor over my own mother??"
"No Ma'am, but that mass isn't this morning - we don't have any mass this morning to go to."
Cue horrified look, as if I have just personally, stripped her dead mother bare for the world to see. "She's in the coffin two rooms away, and I'm supposed to just leave her there?"
"But she's not in the coffin, Grandmother, at least not in the house, right now. She died a long time ago, and was buried then. She's not here right now, so we're not disrespecting her."
"Do you take pleasure in reminding me that I've been motherless for most of my life. Do you think I don't know that? "
"No, ma'am. I'm just saying that it's ok to get ready for your appointment, because... that's what we're doing today."
"Well, it's not what I'm doing."
This back and forth only got worse, as every sentence was another foot in my mouth. Eventually she was sitting and (quite pathetically) trying to straighten out her bed with her one injured arm and her other hand full with her cane, on a footstool next to the bed.
"Here, Grandmother, let me help you up from there: it's too low to work from."
"That's not the only thing that's low today."
That's the thing: my Grandmother has a viper's tongue, when provoked. And I've only done it twice in my life, really, and both of those times have been in the past week, and have occurred when I was trying to be helpful.
The other night's episode had me fleeing to the front porch so I could burst in to tears, call my mother, and burst into tears again. She was upset with my uncle (who is her main caretaker, and thus, her main target when paranoia or delusions strike), and was convinced that he had sold her two youngest children away.
This is a common theme when she's delusional - the hospice people told us that usually, people see their departed loved ones and it's all "hooray and glorious and sweetly sentimental". Not for my grandmother. For her, it's people who've been dead for 70 years showing up and standing in the corner, refusing to speak to her. It's little boys (she had seven) disappearing and nobody helping her find them. It's wondering over and over and over again why you can't find this one or that one, or why they would walk through the house without saying anything to you.
So heartfelt reunions, she's had a few, but mostly, her hallucinations are upsetting to her, and leave her stressed and confused. As happened the other night, when her delusions and viperous tongue reached out and spit at me for the first time.
She was against my uncle, which means he can't even go in the room to give her her meds without raising her blood pressure (which, since she has congestive heart failure, is not optimal). So I went in to get her dinner dishes, and she starts telling me that I need to tell her the truth. (Here's the thing: telling her the truth is actually the WORST thing to do, all the professionals warn me.) And when I say that I don't know what she's talking about, I am all of the sudden 'picking sides' and 'making living here unbearable.'
'Grandmother: I don't know what you need, tell me how to help you.'
'I just hope your conscience is clear, NTE, because if you think about it, there are some horrible things happening here, and I hope you're not a party to them.'
'No, ma'am. I'm not a party to anything I'm ashamed of. I'm only here to help you, if I can.'
'I hope that's true.'
20 minutes later, as I'm giving her a kiss goodnight... 'You know Judas kissed Jesus before he betrayed him, right?'
So her memory may not be up to snuff, but her pointed tongue is still as finely sharpened as ever. (And all my aunts and uncles, and the sister who lived here as a teenager, are feeling just the teensiest bit justified by my experiences: not that they want her to hurt my feelings, but "I told you she wasn't always so sweet" has been spoken more than once.)
Hospice doesn't prepare you for decapitation or slow bleeding, however. They just say things like "try to play along, if you can", and "she shouldn't be upset, if possible" without realizing that those are two contradictory pieces of advice. And while I know she doesn't really, in the scheme of things and our relationship and lifespan together, believe that I am a Judas who won't let her go to her own mother's funeral... she believes it right then, and it's hard for me not to take that personally. The only thing that kept me from running home the other day after the Judas comment was that I knew she wouldn't remember it when she woke up, which was less than an hour later, which I was completely right about, but I must have suffered as much as Judas waiting for the cock to crow, knowing I was hurting someone I loved, even if I didn't mean to.
Damn this is hard.
*and what an irony that is to me, the chronic pain patient: if you're dying, we can ease your physical pain; if you're not, you're pretty much out of luck. Good system, everybody!
**Irony part 2: she hates taking medicine, and will not take it at the first sign of pain. Or the second. Or until a part of her anatomy is in danger of falling off.
Wednesday, July 04, 2012
She always liked the Snoopy one
I've been trying for weeks to write coherently about where I am and what I'm doing. And all I keep coming back to is this: I am living on my grandmother's couch, from which I can see my grandmother's hospital bed at all times. I am making three breakfasts a day, when necessary, and sleeping in 10- 25 minute bursts (finally, a practical use for my painsomnia!) and talking about what happened 75 years ago as if it were happening right now. And I am doing all of those things because my grandmother is dying.
Or she's not. (It depends on the day, really.)
And it's happening both too quickly and too slowly; too tenderly and too angrily; too neatly and too messily. And the rest of my life right now makes about as much sense as that previous sentence.
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About two months ago, I started to get more worried than usual about my grandmother, because during our weekly visits and phone calls, she was saying things that made very little sense, her voice would get whispery or slurred, she'd go off on tangents about subjects we'd not been discussing, and, eventually she stopped being up for visits, and was ending our phone calls rather abruptly ~ sometimes in the middle of a sentence, she'd say "Well, give my love to everyone: talk to you next week", and hang up the phone. Now she's never been particularly skilled at using the phone (especially the newfangled cordless 'doohickey' my uncle installed for her a few years back), so this was strange, but not completely out of character. When I'd ask my uncle how she was, he'd say things that sort of glossed over my concerns - not addressing them so much as giving me a blanket "oh, it's been a bad day/week" and moving past it.
But enough things were happening that I was majorly concerned, so when he started ignoring my calls 3 times out of 5, and she stopped being available for even the slightest phone call, I decided it was serendipitous that the upstairs bathroom needed re-tiling at the exact moment that I needed to get into the house, and asked my uncle for refuge from the smells, hoping it would get my foot in the door here. I got that far in, and - aside from Tuesdays with the kids and a shower at home, and my own doctor's appointments - I haven't left since.
Because she wasn't just not feeling well: she was decidedly different. Failing. Stumbling over sharp edges and corners in conversations that should have gone smoothly. Sleeping all hours of the day, and getting her days and nights confused. Asking for dinner at 6:45 in the morning, demanding to know why we were starving her, even though she'd just eaten at midnight.
Her confusion is a live wire of a thing: you never know which Grandmother is going to wake up. The one who remembers who you are and how she used to lay you down to sleep on a quilt in the den while your mother went to school, or the one who thinks this place, the house she's lived in for 50 years and raised 9 children in, is a hotel or a hospital that you work in and that she'd like to check out of thank you very much. She could take a nap at noon and wake up around three, ready to sweep the porch and sit out in her rocker. Or she could stay awake till 4 in the morning, moaning because you've just told her that four of her sons are dead and she thinks it just happened right now.
"Humor her as much as possible" the hospice people say: If she tells you she sees her dead sister bustling around in her socks and assigning chores, play along if you can. If she thinks she's the charge nurse and is waiting for doctor's orders, let her wait till she gets tired and moves on. That's all good in theory, but in practice, it's having her call you a traitor because you knew that her brothers weren't really dead and you've been letting them hide here all this time and now won't bring them out to her. It's her giving you a dead-eyed stare for 30 minutes because she's sure that you've allowed her "little boys" to be sent away without her consent. It's handing her her purse 4 times in an hour, and helping her count and recount the same $197 dollars in cash she's had in there since May. It's eating steak and baked potatoes at 11:30 a m because she insists it's time for dinner.
Some of those things are doable, and others - because even in her confusion, she's no dope - are not. If she tells you she say a dog in the kitchen last night, and you play along, she wants to know who is feeding the dog, and where it is staying right now, and who allowed a dog in her kitchen in the first place, and aren't you allergic to dogs? And here is where my poor lying skills are put to the test, and where she sees through all my attempts to talk around the subject, and where, inevitably, one of us will wind up upset.
At first, my uncle assumed that this was a complication of one of the medications she was given for her fall down the stairs - she is particularly sensitive to pain meds, and the oxycodone made her hallucinate enough that the doctor took her off it immediately - but now she's been off those meds for months, and she is not improving. And we're remembering little things: like that fall down the stairs - what was she doing up, getting ready for church at 3:30 in the morning in the first place? Like all the conversations we've had to repeat because she didn't remember what we were talking about at all. Like how she seemed to forget that her son and nephew had both died last year, and we'd all assumed that it was just how she was grieving this time - that, having so much heaviness to bear, her brain had decided to remember it only when necessary, and to spare her most of the time. How even last year, maybe two years ago, our visits were getting shorter, and she was going less places, and sleeping more, and participating less, and all of the little things that seemed like just "oh my goodness she's going to be 95 years old, if she wants to go slower, cut her a break!" and now seem like "how did we miss that?"
I think he still assumes that the "confusion" will clear up, at least some - I'm the only one using the word dementia, and when I brought it up the first time, I might as well have punched myself in the face, for the look he gave me. But we both know - this is not normal, this is not getting better, this is not going away.
The hospice people were called in when her aftercare for the fall ran out: she still wasn't able to shower by herself or even get up the stairs very much, and her congestive heart failure was progressing to the point where she needed oxygen some of the time. So the hospice people came in, and keep coming in to help us, but they aren't here to stop anything from happening - just to make it easier on her - and us, I suppose - as it happens.
Her bed's been in the downstairs dining room since the fall (and by fall I mean both the tumble down the stairs and the season which it occurred), but now it's a hospital bed, and the room still has the look of a temporary, make-do space. Her clothes - the housecoats she wears everyday - are stacked on chairs and on the buffet, she doesn't have even a drawer down here she can call her own. I want to have things brought down, things she can recognize as part of her room, pictures or a bedside table, or something, but she still thinks she'll make it back upstairs, and my uncle sides with her (and is the only one of the three of us who can climb the stairs), so I am outnumbered.
I know I'm making some progress with him - he's started telling his brothers and sisters more of the truth when they call. Grandmother is good at pretending - on the phone or when the doctor/nurse/hospice person is here - that she's holding it together pretty well. And sometimes she is. But those times are getting fewer, and the times when she is not are getting more severe, and to say anything else at this point is straight out lying.
I've been avoiding cousins calls for weeks now, knowing that I have to say the truth, and not wanting the words to have to come out of my mouth. My brother knows now, my sisters: telling them was impossible - what do I say? She is not doing well, except for when she is fine. She needs the oxygen every day now, but sometimes it makes things so much better you wonder if it isn't fairy dust. Other times the cannula might as well be blocked, for all the good it does as you sit and watch her chest heave, hoping she catches the next breath. How do you explain that things are routine and desperate all at the same time? How do you get them to see that it is urgent, but not critical today, and that that may change by the time we finish our conversation?
I put such a look of fear on my brother's face, and I know that I feel it as well - The end is coming, and I can't stop it but at the same time, it's just an ordinary Tuesday here, with Grandmother lamenting the state of her curtains ("they never got washed for Christmas, and here it's Easter all ready" "No Grandmother: it's the 4th of July" "That's what I said: didn't I?" "Yes ma'am") and hoping that mail might be interesting. Nothing out of the ordinary, really, except for everything.
When I say that it's happening "too quickly and too slowly", I mean she would hate this, if she knew. She does hate it, when she realizes. Sometimes she has clarity, and those times are the worst, because she knows that she isn't clear the rest of the times - that her days are blanks and holes and that during those blanks and holes she may say things she doesn't mean.
"I hope you know how much I love you," she'll say when she's clear, as if to make up for all the times she'll forget who I am tomorrow, all the misunderstandings we'll have before she's clear again. She was never one to say that, not really: we all knew she loved us, but it wasn't her way to come out and say it. So it means all the more that she does it now. And I do know, I do.
But I don't know what to do, because most of the time I'm just sitting here. Doing the laundry and talking about the time her uncle was killed on the ferry to Staten Island, marking time. We make it through another day, and I write a big X on the calendar, because she's sure to ask me 17 times tomorrow what the date is, and if it's not marked off we'll have to argue about it, and above all, I'm trying to keep the peace. When she gets upset, her breathing gets worse, and she gets more confused, and it certainly isn't worth that worry, to remember the date.
I can watch her heart beat in her neck - the vein there bulges some, and it makes the skin expand like a bullfrog's sometimes when she's breathing too hard. Sometimes her whole chest caves in on a breath, and I hold mine while I wait for it to re inflate. Enough beats, enough bulges, and we make it through to another X, and I wonder what I'm doing here, when she seems OK, really: tired, sure & confused, but maybe I'm making too much of it. Maybe I'm worrying everybody and throwing off our whole summer plans and lives and she'll just keep ticking, just keep making it through the days.
It's not a waste, me being here, because I'm spending time with her, which has always been one of my favorite things, but is now also a strain at times; and I sit and listen to her worries - and oh boy does she have worries, she might be 89% worries at this point; and I make sure she doesn't tangle herself up in the sheets when she gets up to go to the bathroom 16 times during the night, but sometimes it feels like I've put everything on hold until the next horrible thing happens, and that's a terrible feeling.
Like I'm waiting for her to get worse, because I know she's not going to get better, and I wonder if she thinks that's why I'm here, because she can feel how worried I am sometimes, can read it on my face.
"Why are you so sad?" She'll ask me. When she asks me with my name, I can smile, and say "not sad, just tired", and have it be the truth. But sometimes she'll ask as if my being sad is part of some plot against her, or just another sign that she's dead and nobody told her, or yet another example of how we are all hiding things from her, and then I don't have the poker face to pull it off. And I hope I'm not making it worse, feeling sad, when she needs me to bring peace, so I suck it back in, and hope it doesn't leak out so much.
I feel like a float in the Macy's parade, I've got so much sucked in. Because today is Wednesday, July fourth and it's only 9:30 in the morning, and so far she's had a sandwich at 2:30, cookies and milk at 6:00, heard the doorbell ringing at 6:15. And we've talked about a non-existent trip to New York that nobody is making, the time in the 70s that she walked down to listen to the Pops with my two oldest cousins and they all danced in the street on the way home, and at least twice she's told me how to wash the windows when we take the curtains down today.
You know, at the end of those parades, a long time ago, they used to just cut the strings and let the floats drift away. I'm not sure I want to be around when the time comes to let all the sadness out, and floating away sounds heavenly right about now. But I'm here. And I'm sticking. And it sucks, and I wish I could write about it in a way that made logical sense, but it doesn't make logical sense, so we're stuck with this, pouring a little bit of the sadness and worry and stress out onto this page, so I can face going back in there and talking about the goddamn curtains again while I try not to count her pulse or monitor her breathing.
Or she's not. (It depends on the day, really.)
And it's happening both too quickly and too slowly; too tenderly and too angrily; too neatly and too messily. And the rest of my life right now makes about as much sense as that previous sentence.
---
About two months ago, I started to get more worried than usual about my grandmother, because during our weekly visits and phone calls, she was saying things that made very little sense, her voice would get whispery or slurred, she'd go off on tangents about subjects we'd not been discussing, and, eventually she stopped being up for visits, and was ending our phone calls rather abruptly ~ sometimes in the middle of a sentence, she'd say "Well, give my love to everyone: talk to you next week", and hang up the phone. Now she's never been particularly skilled at using the phone (especially the newfangled cordless 'doohickey' my uncle installed for her a few years back), so this was strange, but not completely out of character. When I'd ask my uncle how she was, he'd say things that sort of glossed over my concerns - not addressing them so much as giving me a blanket "oh, it's been a bad day/week" and moving past it.
But enough things were happening that I was majorly concerned, so when he started ignoring my calls 3 times out of 5, and she stopped being available for even the slightest phone call, I decided it was serendipitous that the upstairs bathroom needed re-tiling at the exact moment that I needed to get into the house, and asked my uncle for refuge from the smells, hoping it would get my foot in the door here. I got that far in, and - aside from Tuesdays with the kids and a shower at home, and my own doctor's appointments - I haven't left since.
Because she wasn't just not feeling well: she was decidedly different. Failing. Stumbling over sharp edges and corners in conversations that should have gone smoothly. Sleeping all hours of the day, and getting her days and nights confused. Asking for dinner at 6:45 in the morning, demanding to know why we were starving her, even though she'd just eaten at midnight.
Her confusion is a live wire of a thing: you never know which Grandmother is going to wake up. The one who remembers who you are and how she used to lay you down to sleep on a quilt in the den while your mother went to school, or the one who thinks this place, the house she's lived in for 50 years and raised 9 children in, is a hotel or a hospital that you work in and that she'd like to check out of thank you very much. She could take a nap at noon and wake up around three, ready to sweep the porch and sit out in her rocker. Or she could stay awake till 4 in the morning, moaning because you've just told her that four of her sons are dead and she thinks it just happened right now.
"Humor her as much as possible" the hospice people say: If she tells you she sees her dead sister bustling around in her socks and assigning chores, play along if you can. If she thinks she's the charge nurse and is waiting for doctor's orders, let her wait till she gets tired and moves on. That's all good in theory, but in practice, it's having her call you a traitor because you knew that her brothers weren't really dead and you've been letting them hide here all this time and now won't bring them out to her. It's her giving you a dead-eyed stare for 30 minutes because she's sure that you've allowed her "little boys" to be sent away without her consent. It's handing her her purse 4 times in an hour, and helping her count and recount the same $197 dollars in cash she's had in there since May. It's eating steak and baked potatoes at 11:30 a m because she insists it's time for dinner.
Some of those things are doable, and others - because even in her confusion, she's no dope - are not. If she tells you she say a dog in the kitchen last night, and you play along, she wants to know who is feeding the dog, and where it is staying right now, and who allowed a dog in her kitchen in the first place, and aren't you allergic to dogs? And here is where my poor lying skills are put to the test, and where she sees through all my attempts to talk around the subject, and where, inevitably, one of us will wind up upset.
At first, my uncle assumed that this was a complication of one of the medications she was given for her fall down the stairs - she is particularly sensitive to pain meds, and the oxycodone made her hallucinate enough that the doctor took her off it immediately - but now she's been off those meds for months, and she is not improving. And we're remembering little things: like that fall down the stairs - what was she doing up, getting ready for church at 3:30 in the morning in the first place? Like all the conversations we've had to repeat because she didn't remember what we were talking about at all. Like how she seemed to forget that her son and nephew had both died last year, and we'd all assumed that it was just how she was grieving this time - that, having so much heaviness to bear, her brain had decided to remember it only when necessary, and to spare her most of the time. How even last year, maybe two years ago, our visits were getting shorter, and she was going less places, and sleeping more, and participating less, and all of the little things that seemed like just "oh my goodness she's going to be 95 years old, if she wants to go slower, cut her a break!" and now seem like "how did we miss that?"
I think he still assumes that the "confusion" will clear up, at least some - I'm the only one using the word dementia, and when I brought it up the first time, I might as well have punched myself in the face, for the look he gave me. But we both know - this is not normal, this is not getting better, this is not going away.
The hospice people were called in when her aftercare for the fall ran out: she still wasn't able to shower by herself or even get up the stairs very much, and her congestive heart failure was progressing to the point where she needed oxygen some of the time. So the hospice people came in, and keep coming in to help us, but they aren't here to stop anything from happening - just to make it easier on her - and us, I suppose - as it happens.
Her bed's been in the downstairs dining room since the fall (and by fall I mean both the tumble down the stairs and the season which it occurred), but now it's a hospital bed, and the room still has the look of a temporary, make-do space. Her clothes - the housecoats she wears everyday - are stacked on chairs and on the buffet, she doesn't have even a drawer down here she can call her own. I want to have things brought down, things she can recognize as part of her room, pictures or a bedside table, or something, but she still thinks she'll make it back upstairs, and my uncle sides with her (and is the only one of the three of us who can climb the stairs), so I am outnumbered.
I know I'm making some progress with him - he's started telling his brothers and sisters more of the truth when they call. Grandmother is good at pretending - on the phone or when the doctor/nurse/hospice person is here - that she's holding it together pretty well. And sometimes she is. But those times are getting fewer, and the times when she is not are getting more severe, and to say anything else at this point is straight out lying.
I've been avoiding cousins calls for weeks now, knowing that I have to say the truth, and not wanting the words to have to come out of my mouth. My brother knows now, my sisters: telling them was impossible - what do I say? She is not doing well, except for when she is fine. She needs the oxygen every day now, but sometimes it makes things so much better you wonder if it isn't fairy dust. Other times the cannula might as well be blocked, for all the good it does as you sit and watch her chest heave, hoping she catches the next breath. How do you explain that things are routine and desperate all at the same time? How do you get them to see that it is urgent, but not critical today, and that that may change by the time we finish our conversation?
I put such a look of fear on my brother's face, and I know that I feel it as well - The end is coming, and I can't stop it but at the same time, it's just an ordinary Tuesday here, with Grandmother lamenting the state of her curtains ("they never got washed for Christmas, and here it's Easter all ready" "No Grandmother: it's the 4th of July" "That's what I said: didn't I?" "Yes ma'am") and hoping that mail might be interesting. Nothing out of the ordinary, really, except for everything.
When I say that it's happening "too quickly and too slowly", I mean she would hate this, if she knew. She does hate it, when she realizes. Sometimes she has clarity, and those times are the worst, because she knows that she isn't clear the rest of the times - that her days are blanks and holes and that during those blanks and holes she may say things she doesn't mean.
"I hope you know how much I love you," she'll say when she's clear, as if to make up for all the times she'll forget who I am tomorrow, all the misunderstandings we'll have before she's clear again. She was never one to say that, not really: we all knew she loved us, but it wasn't her way to come out and say it. So it means all the more that she does it now. And I do know, I do.
But I don't know what to do, because most of the time I'm just sitting here. Doing the laundry and talking about the time her uncle was killed on the ferry to Staten Island, marking time. We make it through another day, and I write a big X on the calendar, because she's sure to ask me 17 times tomorrow what the date is, and if it's not marked off we'll have to argue about it, and above all, I'm trying to keep the peace. When she gets upset, her breathing gets worse, and she gets more confused, and it certainly isn't worth that worry, to remember the date.
I can watch her heart beat in her neck - the vein there bulges some, and it makes the skin expand like a bullfrog's sometimes when she's breathing too hard. Sometimes her whole chest caves in on a breath, and I hold mine while I wait for it to re inflate. Enough beats, enough bulges, and we make it through to another X, and I wonder what I'm doing here, when she seems OK, really: tired, sure & confused, but maybe I'm making too much of it. Maybe I'm worrying everybody and throwing off our whole summer plans and lives and she'll just keep ticking, just keep making it through the days.
It's not a waste, me being here, because I'm spending time with her, which has always been one of my favorite things, but is now also a strain at times; and I sit and listen to her worries - and oh boy does she have worries, she might be 89% worries at this point; and I make sure she doesn't tangle herself up in the sheets when she gets up to go to the bathroom 16 times during the night, but sometimes it feels like I've put everything on hold until the next horrible thing happens, and that's a terrible feeling.
Like I'm waiting for her to get worse, because I know she's not going to get better, and I wonder if she thinks that's why I'm here, because she can feel how worried I am sometimes, can read it on my face.
"Why are you so sad?" She'll ask me. When she asks me with my name, I can smile, and say "not sad, just tired", and have it be the truth. But sometimes she'll ask as if my being sad is part of some plot against her, or just another sign that she's dead and nobody told her, or yet another example of how we are all hiding things from her, and then I don't have the poker face to pull it off. And I hope I'm not making it worse, feeling sad, when she needs me to bring peace, so I suck it back in, and hope it doesn't leak out so much.
I feel like a float in the Macy's parade, I've got so much sucked in. Because today is Wednesday, July fourth and it's only 9:30 in the morning, and so far she's had a sandwich at 2:30, cookies and milk at 6:00, heard the doorbell ringing at 6:15. And we've talked about a non-existent trip to New York that nobody is making, the time in the 70s that she walked down to listen to the Pops with my two oldest cousins and they all danced in the street on the way home, and at least twice she's told me how to wash the windows when we take the curtains down today.
You know, at the end of those parades, a long time ago, they used to just cut the strings and let the floats drift away. I'm not sure I want to be around when the time comes to let all the sadness out, and floating away sounds heavenly right about now. But I'm here. And I'm sticking. And it sucks, and I wish I could write about it in a way that made logical sense, but it doesn't make logical sense, so we're stuck with this, pouring a little bit of the sadness and worry and stress out onto this page, so I can face going back in there and talking about the goddamn curtains again while I try not to count her pulse or monitor her breathing.
Monday, June 25, 2012
Happy Arbitrary Day
Welcome to the Blog Carnival #83, for June 2012.
Our own Blog Carnival Leader Extraordinaire, Penney, starts us off with a post about the little known (at least to me) Infante Philip, the heir to the throne whose disabilities led to him being passed over as King of Spain & Naples. (Particularly striking to me was the line from his Wikipedia page that he had been "excluded from the succession to the thrones of Spain and Naples due to his imbecility.", which led me down the wormhole of imbecility -> Mental Retardation -> Euphemism Treadmill -> a discussion re: the evolution of people first language regarding disability.)
The Girl with the Cane gives her take on Disability & Religion, a topic that Ruth Madison also addresses some in her post We Are All Disabled. Ruth's post also makes some great points about disability being seen as 'lesser', and the inherent hierarchies even within the disability community.
Casey's post Cartesian Dualism & Chronic Pain not only gave me a fancy label for how I sometimes have to manage my pain (Cartesian - relating to Descartes, and discussing the mind-body connection/problem), but had a great first person account of how transcending one's pain can be both a positive and a negative for those of us with chronic pain.
In the political spectrum, I found this post by the Queen of Spain to be quite to the point (and hope that the Supreme Court sees the points this week as well).
Robert Rudney is the author of a new book, Lovers Lame, which portrays the romance between two main characters with disabilities, and seems really interesting. (You know I'm always on the lookout for new books: Hero & Heroine both have disabilities and the story talks about the differences between their situations and doesn't just glom them together because they happen to both have physical limitations? Immediate add to the TBR pile.) I also found his discussion about the book in the comments for this carnival to be quite interesting:
Sharon makes some excellent points about the challenges of writing with disabilities (lots of them echo my own experiences, for sure):
In a similar vein, there's this post by Wheelie Catholic, Do I Think About Walking, which I found in my Internet wanderings.
And to bring this edition of the Disability Blog Carnival to a close, we have this positive perspective contributed by Meriah, who's hosting her own Summer Disability Blog Hop each Wednesday, in her post What the Cultural Value of Disability and Star Trek Have in Common:
Our own Blog Carnival Leader Extraordinaire, Penney, starts us off with a post about the little known (at least to me) Infante Philip, the heir to the throne whose disabilities led to him being passed over as King of Spain & Naples. (Particularly striking to me was the line from his Wikipedia page that he had been "excluded from the succession to the thrones of Spain and Naples due to his imbecility.", which led me down the wormhole of imbecility -> Mental Retardation -> Euphemism Treadmill -> a discussion re: the evolution of people first language regarding disability.)
The Girl with the Cane gives her take on Disability & Religion, a topic that Ruth Madison also addresses some in her post We Are All Disabled. Ruth's post also makes some great points about disability being seen as 'lesser', and the inherent hierarchies even within the disability community.
Casey's post Cartesian Dualism & Chronic Pain not only gave me a fancy label for how I sometimes have to manage my pain (Cartesian - relating to Descartes, and discussing the mind-body connection/problem), but had a great first person account of how transcending one's pain can be both a positive and a negative for those of us with chronic pain.
In the political spectrum, I found this post by the Queen of Spain to be quite to the point (and hope that the Supreme Court sees the points this week as well).
Robert Rudney is the author of a new book, Lovers Lame, which portrays the romance between two main characters with disabilities, and seems really interesting. (You know I'm always on the lookout for new books: Hero & Heroine both have disabilities and the story talks about the differences between their situations and doesn't just glom them together because they happen to both have physical limitations? Immediate add to the TBR pile.) I also found his discussion about the book in the comments for this carnival to be quite interesting:
How many movies or TV shows present people with disabilities in romantic or sexual situations? Not many…Stacie's post, Masquerading, particularly hit home for me this month. She talks about how she felt she's pretending, passing as normal, when she spent time with her younger child while her older child with disabilities was in school. Because so much of her brain was still focused on the needs of that child, it often felt like 'pretense' or 'deception'. One of the reasons posting has been so light here this month is because I've mostly moved in with my grandmother and uncle, having realized just how desperate my grandmother's health situation is. I've got another (very long, complicated) post about this going up this week, but what I will say now is that whenever I'm away from the house - gone home to shower or to take my Tuesday with the kids - 85% or more of my brain is thinking about the situation here and what might be occurring in my absence, what I may have to put back together when I return. So that feeling of deception - keeping the happy face going for the kids, especially - is one I'm becoming quite familiar with.
One reason for writing Lovers Lame was to explode this misconception. The loving relationship between Christy and Jonathan, two individuals in wheelchairs, transcends their disabilities, societal norms, a serious accident, and pig-headed parents. With a little help from a sympathetic personal assistant, they achieve sexual fulfillment. They are the lucky ones, but they are fictional.
Sharon makes some excellent points about the challenges of writing with disabilities (lots of them echo my own experiences, for sure):
However, the biggest toll that my disabilities take on my blogging is in volume, frequency, and organization. I tend to write really long posts, and that’s often because I can’t keep track of what I’ve already said. I often make the same point repeatedly because I’ve forgotten that I’ve already made it. I start posts, run out of spoons, plan to finish them another time, and then never do — because I’m too sick. Because I’ve forgotten the point of what I wanted to say. Because I’ve written another post on a similar theme, forgetting that I already had something written on that topic. Because the content is no longer topical. I have approximately a hundred partial posts in my drafts bin here. Of course, my readers don’t see all these failed efforts because I don’t post them!Allison over at Gilbert & Me, (who was so patient when stupid Blogger kept marking her comment as spam), has submitted an older post that is poetic and honest and beautiful, called What Does Seeing Feel Like In it, she discusses all the things she thinks she'd like to see, if given the opportunity. She discusses so many aspects of sight and blindness that I, because vision is not an issue for me, had not considered before, and although it's kind of long, I urge you to read the whole thing if you can. I think the part I liked best about it is that she expresses a natural curiosity about how things might be different and does it in a way that shows all those tropes about how people with disabilities feel sorry for themselves are just a bunch of BS. Case in point:
In the same way that my parents get carried away discussing how they would use their lottery winnings first to pay off all the bills, and then live out the rest of their days quietly in a modest house, in a community where no one knew them to avoid being scammed or robbed, I think about how I would react if suddenly, I could see. ... But until then, I can accept staring longingly over a figurative fence in awe and wonder at the sighted world while sighted people stare back in amazement of me as the way my life was meant to be.
In a similar vein, there's this post by Wheelie Catholic, Do I Think About Walking, which I found in my Internet wanderings.
And to bring this edition of the Disability Blog Carnival to a close, we have this positive perspective contributed by Meriah, who's hosting her own Summer Disability Blog Hop each Wednesday, in her post What the Cultural Value of Disability and Star Trek Have in Common:
We don't look at the contribution of disability in and of itself, you see. We are not looking at disability and seeing it as an opportunity for growth, change, forward movement and advancement of our human race as a whole: we are looking at it like it's a problem. Something to be fixed. Broken bits of human flesh that need mending. We are trying to shove people that are especially unique into a mold that just does not fit, rather than looking at the mold and wondering how we can get rid of it, the mold.That's it for June's edition of the Disability Blog Carnival, this Arbitrary Day: Hope you all are as well as possible, and that you'll keep your eyes open for next month's Carnival, wherever it might be.
Friday, June 01, 2012
Hey, All, it's June
Which means that I'm going to be posting this month's edition of the Disability Blog Carnival - #83 - The post is going to go up on June the 25th, and (in honor of Arbitrary Day) can be about anything disability related your little heart desires: an old post that's a particular favorite of yours that you wish more people had seen, a brand, shiny new post that you're going to write specifically for the Carnival, a rant, a rave, a list - whatever floats your particular boat.
You can post the links on this page, or just leave a comment if you want me to send you my e-mail address (as that link has conveniently disappeared from my template for some strange reason). I do ask that you do your best to make your website as accessible as possible... for me, that means making visual descriptions of things and leaving the captcha off of commenting, when I have the spoons. (And understanding that other people might not have the spoons, when I come across a site that doesn't follow that same protocol.) Submissions will be open till the 23rd, just so I have a chance to compile them all, because last time I hosted there weren't too many, and I had to do some filling in with some favorite posts by other people, which meant remembering where the heck I'd read something, which is an iffy proposition sometimes for me.
Happy June, everybody!
You can post the links on this page, or just leave a comment if you want me to send you my e-mail address (as that link has conveniently disappeared from my template for some strange reason). I do ask that you do your best to make your website as accessible as possible... for me, that means making visual descriptions of things and leaving the captcha off of commenting, when I have the spoons. (And understanding that other people might not have the spoons, when I come across a site that doesn't follow that same protocol.) Submissions will be open till the 23rd, just so I have a chance to compile them all, because last time I hosted there weren't too many, and I had to do some filling in with some favorite posts by other people, which meant remembering where the heck I'd read something, which is an iffy proposition sometimes for me.
Happy June, everybody!
Monday, May 28, 2012
We survived & I remember
My grandfather came home from fighting in Europe during World War II, and never drove a vehicle again in his life: He'd seen the jeep full of soldiers in front of him drive off the side of a mountain as he followed behind driving a supply truck for the convoy.
My great-grandfather survived a torpedo strike on his ship, and walked away with a piece of the ship he served on: we have it here, in a box of my grandmother's stuff, and I didn't know anything about it until I looked it up. **
My great-great-great grandfather was killed on his way home for registering to fight for the Union in the Civil War: a bridge was washed out, and he was washed along with it.
Five of my great-uncles fought during WWII, and managed to come back alive: one of them was a medic at D-Day, and wrote back to his sister (my grandmother) that his "worst fear was coming across my brother, blown to bits, and knowing I wouldn't be able to put him back together." He served for three years, hiding the fact that he was blind in one eye for his entire tour of duty.
My uncles served: Korea, Vietnam, (relative) peacetime. On ships, planes and submarines.
My cousin was the most handsome man I'd ever seen in uniform, and his father said the military made him better than he knew he could be, (which only makes sense if you know that my cousin always thought he could be anything, so that's really saying something).
My dad served for the first 15 years of my life, fought in Iraq, Desert Storm, as I sat, frozen in front of the television screen watching as little green bombs lit up the night-vision sky, blasting away people and lives, worried I'd never hear from him again. He came home, eventually, but he didn't come home whole. He told my brother once that he was a Navy Seal: I don't know if it's true or not, but it comforts my brother to think of all the heroic things he did while he was away from us. It doesn't comfort me much. I don't know what he saw or did while he was in the Navy, I only know that it took him away from me when I was a little girl, and took it's toll on him when he came back. He didn't get help for what was (arguably, but most likely) some very real PTSD - he didn't think he had a problem with drinking, and he'd fight you if you tried to talk to him about it. He wasn't depressed, except for when her was really depressed, and that was all someone else's fault anyways, so what did he need help for?
And when he died, we still had his ashes scattered at sea. The Navy sent us a DVD of the ceremony: short, sacred, solemn. Gone.
So, it's Memorial Day, and I remember: Nurses who served at hospitals, filling in for the ones that got sent overseas. Youngest brothers who moved their new families home to Boston because all of the older brothers had to go fight and someone had to stay with their parents. The creaks of metal being pressurized as you take your first dive in a submarine and pray that the stupid thing holds. Rising to the highest civilian rank in the Air Force and being accepted as the 'boss of the base.' And all the mothers and sisters and daughters and wives, sons and fathers and brothers, who waited at home. The soldiers who came back, the soldiers who didn't, and the soldiers who only sort-of did.
I remember.
**The ship was the USS Mt Vernon , in case you're interested. (There's also pictures of my Dad, Grandfather & Great- Grandfather in their uniforms.)
My great-grandfather survived a torpedo strike on his ship, and walked away with a piece of the ship he served on: we have it here, in a box of my grandmother's stuff, and I didn't know anything about it until I looked it up. **
My great-great-great grandfather was killed on his way home for registering to fight for the Union in the Civil War: a bridge was washed out, and he was washed along with it.
Five of my great-uncles fought during WWII, and managed to come back alive: one of them was a medic at D-Day, and wrote back to his sister (my grandmother) that his "worst fear was coming across my brother, blown to bits, and knowing I wouldn't be able to put him back together." He served for three years, hiding the fact that he was blind in one eye for his entire tour of duty.
My uncles served: Korea, Vietnam, (relative) peacetime. On ships, planes and submarines.
My cousin was the most handsome man I'd ever seen in uniform, and his father said the military made him better than he knew he could be, (which only makes sense if you know that my cousin always thought he could be anything, so that's really saying something).
My dad served for the first 15 years of my life, fought in Iraq, Desert Storm, as I sat, frozen in front of the television screen watching as little green bombs lit up the night-vision sky, blasting away people and lives, worried I'd never hear from him again. He came home, eventually, but he didn't come home whole. He told my brother once that he was a Navy Seal: I don't know if it's true or not, but it comforts my brother to think of all the heroic things he did while he was away from us. It doesn't comfort me much. I don't know what he saw or did while he was in the Navy, I only know that it took him away from me when I was a little girl, and took it's toll on him when he came back. He didn't get help for what was (arguably, but most likely) some very real PTSD - he didn't think he had a problem with drinking, and he'd fight you if you tried to talk to him about it. He wasn't depressed, except for when her was really depressed, and that was all someone else's fault anyways, so what did he need help for?
And when he died, we still had his ashes scattered at sea. The Navy sent us a DVD of the ceremony: short, sacred, solemn. Gone.
So, it's Memorial Day, and I remember: Nurses who served at hospitals, filling in for the ones that got sent overseas. Youngest brothers who moved their new families home to Boston because all of the older brothers had to go fight and someone had to stay with their parents. The creaks of metal being pressurized as you take your first dive in a submarine and pray that the stupid thing holds. Rising to the highest civilian rank in the Air Force and being accepted as the 'boss of the base.' And all the mothers and sisters and daughters and wives, sons and fathers and brothers, who waited at home. The soldiers who came back, the soldiers who didn't, and the soldiers who only sort-of did.
I remember.
**The ship was the USS Mt Vernon , in case you're interested. (There's also pictures of my Dad, Grandfather & Great- Grandfather in their uniforms.)
Friday, May 25, 2012
"Some heavy ammunition on your side..."
Just before Christmas, when everything was going
berserk with Grandmother (again) and me (as usual) and Mom (which was new) and all the usual
December craziness (birthdays and shopping and Christmas and doctors, oh my), something happened that hasn't happened to me in a long time, and I've been trying to write about it since, but the words didn't come till now.
I hope getting it out there will stop making it so important in my mind. I write about everything here, so (even though it feels raw still) it'll be worth saying it 'out loud', as it were.
----
Mom & I were driving out to see Grandmother at the rehab (like we were doing every day at that point), and I'd spent the morning chopping up all the ingredients for beef stew and thrown them in the crock pot and turned it on low before we left. And I'm sitting in the car and mom makes some random comment about leaving things on and fires, and blah blah blah, and instead of just being a piece of our normal everyday conversation, it was like SPARK! and that tiny little off-hand remark managed to ignite an instant fire in my brain.
Immediately I started to worry about the crock pot, to reanalyze ever step I'd taken in making the stew - had I really turned it on low, or had I set it to high and it would burn the meat so quickly that it would catch fire? Was it safe to turn it on and leave the house at any setting? Have we ever done this before, even though I read about it all the time on the internet, that people make crock pot stuff and then go to work with it cooking, have we ever personally tried it before? Are we too far from the house to go back and turn it off? Just a constant stampede of 'could I be setting the house of fire' thoughts tumbling around in my brain, while I'm attempting to still chat with mom and seem like everything is ok.
Meanwhile, I know that what I'm worrying about is stupid: We leave all sorts of things - computers, cable boxes, the fridge, the dryer - on at home by themselves all the time. Nothing has ever happened, nothing is going to happen. House fires are rare, and I was careful and made sure the crock pot wasn't near anything and was on low, and I know all of this, and yet, I can't stop worrying. Some fifteen minutes later, it's still in my brain, still rolling around in there, maybe even picking up speed, because it's loud enough now that I've said it out loud, trying to make it seem casual, trying to act like we're still joking. Ha ha! we laugh, as I say "but that wouldn't really happen, right?" Big laughs all around.
Still, 25 minutes into the ride, and now I've been muttering about it and obsessing about it for our entire ride, and my next deliberately casual "It's not dangerous to have left that cooking, right?" pops out of my mouth and Mom says sharply "Oh my god: just let it go already!" Which is the normal response, if a person is just being stupid about something, and it's driving you crazy. But this wasn't just normal "oh, gee: random thought - let's giggle about this some more!" comment.
Nope, by this point I was full steam ahead into my first real anxiety attack in years.
I've had minor ones here and there - during other people's drunken fights, mostly, when I would swear some sort of PTSD part of my brain kicks in and I have to excuse myself from the tension of the current screaming match to go throw up before I can wade into things (either as peacekeeper or firebrand). Sometimes just the sound of the cork popping out of the wine bottle in the kitchen is enough to have my shoulders creeping upwards with tension. But for the most part, I've managed them, and managed to avoid them (which is even better). I wouldn't even say that anxiety is one of my top 20 CFIDS symptoms, probably because I was never not a slightly apprehensive person: it's just part of my genetic make up, I'm afraid.
But these huge panic attacks - of which I've (thankfully) only had about 6 - these huge, really full blown, tornado brain of worry, hold your shit together or you'll lose it monstrosities. When those mothers come, it's so frightening, because you know you don't have to be worrying about the thing, or that worrying about it won't help the situation at all, but you just can't stop yourself. Your brain is a runaway worry train, and you're just along for the ride.
So she snaps at me, semi-facetiously, and I burst into tears. 'It doesn't help,' I tell her 'to tell me that the thing I'm worrying about is stupid. I KNOW IT'S STUPID. Now I just feel even more anxious because I'm ashamed that I'm freaking out over something so dumb."
But here's the thing that people who don't have anxiety don't get. To people without panic attacks (those lucky bastards), it's just like regular worry: "Oh I feel like maybe that wasn't the best choice," but it's not a big deal, because Oh well, shrug. People will worry. It happens. I'm a champion worrier, and that's not what a panic attack is - for me at least. Worry is one thing, panic attack is a whole 'nother level of worry, combined with an astronomical confidence level - confidence in the truth of the fear, that is.
A panic attack is not just dread, but certainty. It is an absolute conviction of doom. I may know full well that whatever has set this off is a ridiculous thing to be worried about, but I am still 1000% sure in my gut that it doesn't matter that the odds are astronomical that something could go wrong: something is telling me that it's not right, so it must be so. Something is warning me to fix the situation, and I'm not heeding the warning, and that goes against every instinct you have. In this case, all the signs are all pointing to the idea that the house will have burned down by the time we get home, and I'm supposed to blithely ignore that and continue on with our day as if nothing is wrong? Impossible: it feels WRONG.
That's when the logical part of my brain shrinks down to nothing, and instead I remember all those news stories about people who 'listened to their gut' and saved their families. Or I replay all the times my feeling that something wasn't right was an accurate representation of the situation, and try to convince myself that this time it's ok to ignore all the DANGERDANGERDANGER signals my brain is trying to send me.
I dripped tears for the remainder of our ride, playing the tapes in my head that I know work to calm me: 'This is just a panic attack, it will pass. This is SO not about the beef stew chica: you're life is feeling more than a little bit out of control right now, don't ya think? Let's just ride this one out, and things will get better. You are not psychic, and the house is not burning down while you ignore all the warning signs - this is not a real threat.' But because it feels like a real threat, it takes me the whole ride to calm down.
I'm not shaking by the time we get to the rehab, but I'm still so ashamed - of the panic attack; of the tears, of not handling things like a grown up and instead breaking down into something useless; of the fact that I've broken a streak of panic! attack! free! years! over something so ridiculous - that we cut short our visit and go home relatively early. I know that this is mom's way of apologizing for snapping at me (which, was nice but I'm not sure it was necessary), and reassuring me all at once.
We arrive home to stew - nothing more. Once I calmed down enough, 99% of me was sure that was all we'd find. But the whole ride home, there's that one percent, that one embarrassed, fear-soaked percent, that's trying to get me ready to deal with the fact that I've failed to save all of our worldly possessions, just because I didn't trust myself enough to say "let's go home and I'll shut that off, and then we'll go." And because of that one measly percent, I'm not reassured, because once that panic genie is out of the bottle, I don't know if I'll be able to stopper him up again.
-----
That's why it took me five months to write this post: because god forbid that I tried to tap back into that feeling enough to write about it, and it exploded all over me again. I had to be sure enough of where I was, emotionally, to write about that, and even that feels like a weakness to me: to be so scared of remembering how scared I was? Panic attacks are ridiculous.
And I was right, about the genie part - I've felt him trying to creep up on me a few times since, but I'm better at recognizing it than I used to be, so I've been cutting them off before the fear can blossom on me (for the most part). And some pretty stressful shit has gone down since then, so I'm feeling like I've got a handle on managing it right now, which is good.
Because the next time I let something out of a bottle, it better be granting wishes, not paralyzing me with fear. (Look: wish number one is all ready!)
I hope getting it out there will stop making it so important in my mind. I write about everything here, so (even though it feels raw still) it'll be worth saying it 'out loud', as it were.
----
Mom & I were driving out to see Grandmother at the rehab (like we were doing every day at that point), and I'd spent the morning chopping up all the ingredients for beef stew and thrown them in the crock pot and turned it on low before we left. And I'm sitting in the car and mom makes some random comment about leaving things on and fires, and blah blah blah, and instead of just being a piece of our normal everyday conversation, it was like SPARK! and that tiny little off-hand remark managed to ignite an instant fire in my brain.
Immediately I started to worry about the crock pot, to reanalyze ever step I'd taken in making the stew - had I really turned it on low, or had I set it to high and it would burn the meat so quickly that it would catch fire? Was it safe to turn it on and leave the house at any setting? Have we ever done this before, even though I read about it all the time on the internet, that people make crock pot stuff and then go to work with it cooking, have we ever personally tried it before? Are we too far from the house to go back and turn it off? Just a constant stampede of 'could I be setting the house of fire' thoughts tumbling around in my brain, while I'm attempting to still chat with mom and seem like everything is ok.
Meanwhile, I know that what I'm worrying about is stupid: We leave all sorts of things - computers, cable boxes, the fridge, the dryer - on at home by themselves all the time. Nothing has ever happened, nothing is going to happen. House fires are rare, and I was careful and made sure the crock pot wasn't near anything and was on low, and I know all of this, and yet, I can't stop worrying. Some fifteen minutes later, it's still in my brain, still rolling around in there, maybe even picking up speed, because it's loud enough now that I've said it out loud, trying to make it seem casual, trying to act like we're still joking. Ha ha! we laugh, as I say "but that wouldn't really happen, right?" Big laughs all around.
Still, 25 minutes into the ride, and now I've been muttering about it and obsessing about it for our entire ride, and my next deliberately casual "It's not dangerous to have left that cooking, right?" pops out of my mouth and Mom says sharply "Oh my god: just let it go already!" Which is the normal response, if a person is just being stupid about something, and it's driving you crazy. But this wasn't just normal "oh, gee: random thought - let's giggle about this some more!" comment.
Nope, by this point I was full steam ahead into my first real anxiety attack in years.
I've had minor ones here and there - during other people's drunken fights, mostly, when I would swear some sort of PTSD part of my brain kicks in and I have to excuse myself from the tension of the current screaming match to go throw up before I can wade into things (either as peacekeeper or firebrand). Sometimes just the sound of the cork popping out of the wine bottle in the kitchen is enough to have my shoulders creeping upwards with tension. But for the most part, I've managed them, and managed to avoid them (which is even better). I wouldn't even say that anxiety is one of my top 20 CFIDS symptoms, probably because I was never not a slightly apprehensive person: it's just part of my genetic make up, I'm afraid.
But these huge panic attacks - of which I've (thankfully) only had about 6 - these huge, really full blown, tornado brain of worry, hold your shit together or you'll lose it monstrosities. When those mothers come, it's so frightening, because you know you don't have to be worrying about the thing, or that worrying about it won't help the situation at all, but you just can't stop yourself. Your brain is a runaway worry train, and you're just along for the ride.
So she snaps at me, semi-facetiously, and I burst into tears. 'It doesn't help,' I tell her 'to tell me that the thing I'm worrying about is stupid. I KNOW IT'S STUPID. Now I just feel even more anxious because I'm ashamed that I'm freaking out over something so dumb."
But here's the thing that people who don't have anxiety don't get. To people without panic attacks (those lucky bastards), it's just like regular worry: "Oh I feel like maybe that wasn't the best choice," but it's not a big deal, because Oh well, shrug. People will worry. It happens. I'm a champion worrier, and that's not what a panic attack is - for me at least. Worry is one thing, panic attack is a whole 'nother level of worry, combined with an astronomical confidence level - confidence in the truth of the fear, that is.
A panic attack is not just dread, but certainty. It is an absolute conviction of doom. I may know full well that whatever has set this off is a ridiculous thing to be worried about, but I am still 1000% sure in my gut that it doesn't matter that the odds are astronomical that something could go wrong: something is telling me that it's not right, so it must be so. Something is warning me to fix the situation, and I'm not heeding the warning, and that goes against every instinct you have. In this case, all the signs are all pointing to the idea that the house will have burned down by the time we get home, and I'm supposed to blithely ignore that and continue on with our day as if nothing is wrong? Impossible: it feels WRONG.
That's when the logical part of my brain shrinks down to nothing, and instead I remember all those news stories about people who 'listened to their gut' and saved their families. Or I replay all the times my feeling that something wasn't right was an accurate representation of the situation, and try to convince myself that this time it's ok to ignore all the DANGERDANGERDANGER signals my brain is trying to send me.
I dripped tears for the remainder of our ride, playing the tapes in my head that I know work to calm me: 'This is just a panic attack, it will pass. This is SO not about the beef stew chica: you're life is feeling more than a little bit out of control right now, don't ya think? Let's just ride this one out, and things will get better. You are not psychic, and the house is not burning down while you ignore all the warning signs - this is not a real threat.' But because it feels like a real threat, it takes me the whole ride to calm down.
I'm not shaking by the time we get to the rehab, but I'm still so ashamed - of the panic attack; of the tears, of not handling things like a grown up and instead breaking down into something useless; of the fact that I've broken a streak of panic! attack! free! years! over something so ridiculous - that we cut short our visit and go home relatively early. I know that this is mom's way of apologizing for snapping at me (which, was nice but I'm not sure it was necessary), and reassuring me all at once.
We arrive home to stew - nothing more. Once I calmed down enough, 99% of me was sure that was all we'd find. But the whole ride home, there's that one percent, that one embarrassed, fear-soaked percent, that's trying to get me ready to deal with the fact that I've failed to save all of our worldly possessions, just because I didn't trust myself enough to say "let's go home and I'll shut that off, and then we'll go." And because of that one measly percent, I'm not reassured, because once that panic genie is out of the bottle, I don't know if I'll be able to stopper him up again.
-----
That's why it took me five months to write this post: because god forbid that I tried to tap back into that feeling enough to write about it, and it exploded all over me again. I had to be sure enough of where I was, emotionally, to write about that, and even that feels like a weakness to me: to be so scared of remembering how scared I was? Panic attacks are ridiculous.
And I was right, about the genie part - I've felt him trying to creep up on me a few times since, but I'm better at recognizing it than I used to be, so I've been cutting them off before the fear can blossom on me (for the most part). And some pretty stressful shit has gone down since then, so I'm feeling like I've got a handle on managing it right now, which is good.
Because the next time I let something out of a bottle, it better be granting wishes, not paralyzing me with fear. (Look: wish number one is all ready!)
Wednesday, May 16, 2012
Having a bedtime
I know we've talked about my CFS-related insomnia before, but it's tearing off little pieces of my life right now, so I'm going to talk about it again. Feel free to move along: probably the only thing worse than listening to someone tell you random half-stories about their dreams is listening to someone ranting about how they're not sleeping. Which is exactly what I'm going to do right now.
For the past few months, I'd thought my insomnia might be improving. It was tiny steps like closing my eyes and not opening them again every 36 seconds, or fading out during a show and realizing that I'd missed more than one set of commercials that made me start to think "holy shit: I was actually asleep there for a few minutes!", and led me to hope that maybe, just maybe, this cycle of painsomnia was letting up. I did all the things you're supposed to do to create an 'optimal sleeping environment' (as my sleep specialist likes to call it): gave myself a strict bedtime (midnight: anything earlier than that was too depressing, and made nights seem endless) at which point I shut off all electrical appliances - TV and lights off, computer shut, etc - opened the window a little bit (because your room should be slightly chilly to help you sleep), and increased the number of hot showers I was taking (because there's something about hot showers and your body gradually cooling itself that is supposed to be helpful with sleeping). All the little tricks I knew that helped me, I put into effect - Initiate Operation SLEEP NOW PLEASE!!
And the thing is, maybe that all seems like common sense to you, but to somebody like me, it's also kind of scary. Sleep is kind of scary. Because there was a time (I was going to say 'not too long ago,' but then I counted back and it's close to ten years, so I guess that was a while ago) where sleeping was all I could do. Sleep was as involuntary then as not sleeping is now and it consumed my whole life. I had to schedule my classes around when I could nap; I slept through people's birthday parties and graduations, my own prom and more than one family activity. I would wake up exhausted (so, basically no difference there), even though I had slept for 8 hours, 10 hours, 14, or 17 hours. My whole life was sleep based (again, no difference, just now it's based on the fact that sleep won't come), and there was nothing I could do without first balancing it out with hours of sleep in my mental ledger: 2 hours of class, then an hour nap. 1 day of student teaching, a 1/2 hour nap at lunch and then a four hour nap back at the dorms. Best friend's getting married, stay up till 1:00 (even though everybody else went out afterwards and stayed up till 7), sleep for a day and a half until your mother wakes you up, worried that you've not eaten in 36 hours.
That's how all encompassing sleep was for me, before the switch flipped and insomnia took its place. So while I long for sleep - long for it with the "I will sell you my immortal soul" type of desperation only other insomniacs can truly appreciate - I'm still pretty afraid that my body will flip the switch in the other direction, and I'll once again transform into some sort of Rip Van Winkle-tte. So taking steps to improve my sleep is one of those double edged swords you're always hearing about - you know, the only kind that's really useful, but you take a large chance that you'll get stabbed by it in the process.
Unfortunately. those few good signs have all but dried up again, and my commitment to creating a sleep Utopia flew out the window right after them. Even if I shut everything down at midnight, I've more than likely turned it all back on again by 1 - my patience for tossing and turning is at an all time low, and every wrinkle in the sheet seems mountainous and villainous, and I start debating whether or not I could create enough of a spark with my heating pad to set the whole damn thing on fire, or if the mattress will fit through my window, should I decide to pitch it out there. Evil NTE comes out at night and dreams up ways to curse the entire sleeping world, or super-empathetic NTE takes over and spends all night watching documentaries about the saddest people who've ever existed in the universe. (Side note - If I am Youtube surfing at night, no matter how seemingly innocent a search I have started off with, I will -without fail- somehow wind up on a clip that will make me bawl. I started out watching old songs from Sesame Street (1-2-3-4-5-6-7-8-9-10-11-12 Ladybugs, at the ladybug picnic), and ended up watching Big Bird sing at Jim Henson's memorial service, at which point, my eyes were swollen shut, and I decided that was as close to sleep as I was going to get, and closed the computer.)
I saw someone use the term Painsomnia (on the Twitter, I think), and it was like "Hello word: I'm so glad someone has created you because you are exactly what I have been trying to say for ten years, but couldn't." Painsomnia is exactly right, because if I wasn't all Princess & the Pea because of the stupid fibromyalgia, I might be able to get 15 consecutive minutes of sleep in, and I wouldn't be here, again, ranting about the fact that I didn't sleep last night. I wouldn't be in complete zombie mode today, after 4 really tough nights, during which I saw every minute of the sunrise, and tried to translate the morning birdsong into English. (I think the robin who lives in my neighbor's tree is very upset about the 2012 political scene. Maybe.)
But I'm re-initiating the bedtime tonight, because it feels like the thing to do. Maybe it'll help, more likely I will spend 6.5 hours listening to a dead DJ being replayed on the fuzziest AM radio station my radio can reach (that's a story for another time), but at least I'll feel like I'm doing something.
Although, I can't promise I won't be back here all the earlier in the morning, complaining again.
For the past few months, I'd thought my insomnia might be improving. It was tiny steps like closing my eyes and not opening them again every 36 seconds, or fading out during a show and realizing that I'd missed more than one set of commercials that made me start to think "holy shit: I was actually asleep there for a few minutes!", and led me to hope that maybe, just maybe, this cycle of painsomnia was letting up. I did all the things you're supposed to do to create an 'optimal sleeping environment' (as my sleep specialist likes to call it): gave myself a strict bedtime (midnight: anything earlier than that was too depressing, and made nights seem endless) at which point I shut off all electrical appliances - TV and lights off, computer shut, etc - opened the window a little bit (because your room should be slightly chilly to help you sleep), and increased the number of hot showers I was taking (because there's something about hot showers and your body gradually cooling itself that is supposed to be helpful with sleeping). All the little tricks I knew that helped me, I put into effect - Initiate Operation SLEEP NOW PLEASE!!
And the thing is, maybe that all seems like common sense to you, but to somebody like me, it's also kind of scary. Sleep is kind of scary. Because there was a time (I was going to say 'not too long ago,' but then I counted back and it's close to ten years, so I guess that was a while ago) where sleeping was all I could do. Sleep was as involuntary then as not sleeping is now and it consumed my whole life. I had to schedule my classes around when I could nap; I slept through people's birthday parties and graduations, my own prom and more than one family activity. I would wake up exhausted (so, basically no difference there), even though I had slept for 8 hours, 10 hours, 14, or 17 hours. My whole life was sleep based (again, no difference, just now it's based on the fact that sleep won't come), and there was nothing I could do without first balancing it out with hours of sleep in my mental ledger: 2 hours of class, then an hour nap. 1 day of student teaching, a 1/2 hour nap at lunch and then a four hour nap back at the dorms. Best friend's getting married, stay up till 1:00 (even though everybody else went out afterwards and stayed up till 7), sleep for a day and a half until your mother wakes you up, worried that you've not eaten in 36 hours.
That's how all encompassing sleep was for me, before the switch flipped and insomnia took its place. So while I long for sleep - long for it with the "I will sell you my immortal soul" type of desperation only other insomniacs can truly appreciate - I'm still pretty afraid that my body will flip the switch in the other direction, and I'll once again transform into some sort of Rip Van Winkle-tte. So taking steps to improve my sleep is one of those double edged swords you're always hearing about - you know, the only kind that's really useful, but you take a large chance that you'll get stabbed by it in the process.
Unfortunately. those few good signs have all but dried up again, and my commitment to creating a sleep Utopia flew out the window right after them. Even if I shut everything down at midnight, I've more than likely turned it all back on again by 1 - my patience for tossing and turning is at an all time low, and every wrinkle in the sheet seems mountainous and villainous, and I start debating whether or not I could create enough of a spark with my heating pad to set the whole damn thing on fire, or if the mattress will fit through my window, should I decide to pitch it out there. Evil NTE comes out at night and dreams up ways to curse the entire sleeping world, or super-empathetic NTE takes over and spends all night watching documentaries about the saddest people who've ever existed in the universe. (Side note - If I am Youtube surfing at night, no matter how seemingly innocent a search I have started off with, I will -without fail- somehow wind up on a clip that will make me bawl. I started out watching old songs from Sesame Street (1-2-3-4-5-6-7-8-9-10-11-12 Ladybugs, at the ladybug picnic), and ended up watching Big Bird sing at Jim Henson's memorial service, at which point, my eyes were swollen shut, and I decided that was as close to sleep as I was going to get, and closed the computer.)
I saw someone use the term Painsomnia (on the Twitter, I think), and it was like "Hello word: I'm so glad someone has created you because you are exactly what I have been trying to say for ten years, but couldn't." Painsomnia is exactly right, because if I wasn't all Princess & the Pea because of the stupid fibromyalgia, I might be able to get 15 consecutive minutes of sleep in, and I wouldn't be here, again, ranting about the fact that I didn't sleep last night. I wouldn't be in complete zombie mode today, after 4 really tough nights, during which I saw every minute of the sunrise, and tried to translate the morning birdsong into English. (I think the robin who lives in my neighbor's tree is very upset about the 2012 political scene. Maybe.)
But I'm re-initiating the bedtime tonight, because it feels like the thing to do. Maybe it'll help, more likely I will spend 6.5 hours listening to a dead DJ being replayed on the fuzziest AM radio station my radio can reach (that's a story for another time), but at least I'll feel like I'm doing something.
Although, I can't promise I won't be back here all the earlier in the morning, complaining again.
Friday, May 11, 2012
That's ok: I don't need to shower
So I just had my reevaluation for my participation in our state's Personal Care Assistant program - the program I use to pay my mom for doing things like buying groceries and helping me shower. I've been in the program for about 6 years or so, and every time the people come out - and it's never the same people - they tell me something different. At my initial intake (done 3 agencies ago), the nurse and the case manager came together, sat with me and basically explained how I didn't qualify for 3/4 of the stuff I really need help with - like cooking and cleaning and whatnot - because I live at home, and "the other people you live with are expected to pick up those tasks." That was news to both them and me, I assure you. And considering that one of the stated goals of the program is to "help clients live as independent a life as possible", kind of contrary to what we were supposed to be accomplishing. But they were right - six years later, I still am not technically approved for the majority of what my actual needs are: someone to dust when I'm not around (bc of the asthma); somebody to bring groceries into the house and maybe get them made into a meal once in a while; all the toting and lugging of me and my chair to various non-medical appointments, etc.
We filled out the paper work, with our best case scenarios, and nobody was surprised when the decision came back from Mass Health approved for significantly less hours than were necessary. Significantly less hours than a qualified nurse and my own doctor considered necessary, I might add. But I took what I could get, because, especially at that point, any financial help was better than the nothing I was getting. The kicker, in regards to my hours, is that I was approved for 30 minutes of "medical related" travel time A WEEK.
30 minutes of medical related travel time happens at least 3 times a week, and that doesn't even include the actual appointments.
At another evaluation, the nurse told me that I qualified for an additional stipend, because of a new part of the program, and that she would put in the paperwork for me. She didn't, and by the time I found out that she hadn't, the state had suspended that program, and I could no longer apply. Last year, the nurse told me I was approved for two years, and wouldn't need a new evaluation until 2013. I've had two people come out since then, both for evaluations.
Today's nurse went out of her way to tell me that Mass Health is dramatically cutting back on hours, to the point where she's had to tell clients that their hours were cut back because "risk of falls is anticipatory language, and Mass Health doesn't pay for what we might anticipate our problems to be, but what they actually are." Gee, there's great budget reducing deduction, state agency --> cut preemptive funds to protect people from falling, client falls and is badly injured, now needs MORE services then ever (so you spend even more money than you would have originally)! Ignoring the fact that the client is a real person, who will have additional pain and suffering because of the fall (and I'm only ignoring it because I know they are), what kind of logistical financial sense does that equation make?? True facts: I hated math in school, but I still managed to pass, so I know that it makes zero actual sense!
Anyways, she gave me the spiel about cutbacks and then said "So I hope I don't have to make any changes in your eval, because the only clients that I've had them deny are ones that I've asked for adjustments on. So I try not to rock the boat." She said that before we had started going over what help I need and when I need it, she said it at the bottom of every page, and she said it again as I was signing my (blank) form, so what are the chances that I told her that I felt like I needed more hours? Even though I really do need more hours, and need adjustments on the aspects of daily living portion that are still wrong from five years ago?
I don't think you even have had to pass math to guess, but the chances of that are also zero!
There's so much talk in the air lately about benefit scroungers & welfare layabouts - people who are scamming the system and cheating 'the tax payers' out of their hard earned money. There's a lot of talk about cutbacks to essential social services and financial supportive programs. You can't read any sort of reliable news source that isn't telling you about how the social safety net is being dismantled in Country A or Country B.
And if you read through any of the blogs from last week's brilliant Blogging Against Disabilism Day, then you probably saw how much these cutbacks are affecting the lives of very real people. Here's just one more subtle example: I wasn't denied any services by the program I'm in, or by Mass Health, or even by the agency that administers my participation in the program. But I was told, again and again, that to ask for the amount of help I truly need could leave me without the help I already have. That to ask for more is to put it all at risk, and that was enough. And it wasn't the nurse's fault - she was honestly trying to be helpful, because she knew I needed services and didn't want to see me without anything. But when the climate is "our state is cutting money where ever it can find it, and if that means a person with disabilities falls (or goes without meals or showers) because of it, oh well: unintended byproduct of cost-cutting Necessary Measures!", then people with disabilities know that they have to be extra cautious, to settle for what they have, even when it's not good enough.
But no, those commenters who were sure that there "isn't STILL discrimination against the disabled": I'm sure you're right. I'm just being overly sensitive.
We filled out the paper work, with our best case scenarios, and nobody was surprised when the decision came back from Mass Health approved for significantly less hours than were necessary. Significantly less hours than a qualified nurse and my own doctor considered necessary, I might add. But I took what I could get, because, especially at that point, any financial help was better than the nothing I was getting. The kicker, in regards to my hours, is that I was approved for 30 minutes of "medical related" travel time A WEEK.
30 minutes of medical related travel time happens at least 3 times a week, and that doesn't even include the actual appointments.
At another evaluation, the nurse told me that I qualified for an additional stipend, because of a new part of the program, and that she would put in the paperwork for me. She didn't, and by the time I found out that she hadn't, the state had suspended that program, and I could no longer apply. Last year, the nurse told me I was approved for two years, and wouldn't need a new evaluation until 2013. I've had two people come out since then, both for evaluations.
Today's nurse went out of her way to tell me that Mass Health is dramatically cutting back on hours, to the point where she's had to tell clients that their hours were cut back because "risk of falls is anticipatory language, and Mass Health doesn't pay for what we might anticipate our problems to be, but what they actually are." Gee, there's great budget reducing deduction, state agency --> cut preemptive funds to protect people from falling, client falls and is badly injured, now needs MORE services then ever (so you spend even more money than you would have originally)! Ignoring the fact that the client is a real person, who will have additional pain and suffering because of the fall (and I'm only ignoring it because I know they are), what kind of logistical financial sense does that equation make?? True facts: I hated math in school, but I still managed to pass, so I know that it makes zero actual sense!
Anyways, she gave me the spiel about cutbacks and then said "So I hope I don't have to make any changes in your eval, because the only clients that I've had them deny are ones that I've asked for adjustments on. So I try not to rock the boat." She said that before we had started going over what help I need and when I need it, she said it at the bottom of every page, and she said it again as I was signing my (blank) form, so what are the chances that I told her that I felt like I needed more hours? Even though I really do need more hours, and need adjustments on the aspects of daily living portion that are still wrong from five years ago?
I don't think you even have had to pass math to guess, but the chances of that are also zero!
There's so much talk in the air lately about benefit scroungers & welfare layabouts - people who are scamming the system and cheating 'the tax payers' out of their hard earned money. There's a lot of talk about cutbacks to essential social services and financial supportive programs. You can't read any sort of reliable news source that isn't telling you about how the social safety net is being dismantled in Country A or Country B.
And if you read through any of the blogs from last week's brilliant Blogging Against Disabilism Day, then you probably saw how much these cutbacks are affecting the lives of very real people. Here's just one more subtle example: I wasn't denied any services by the program I'm in, or by Mass Health, or even by the agency that administers my participation in the program. But I was told, again and again, that to ask for the amount of help I truly need could leave me without the help I already have. That to ask for more is to put it all at risk, and that was enough. And it wasn't the nurse's fault - she was honestly trying to be helpful, because she knew I needed services and didn't want to see me without anything. But when the climate is "our state is cutting money where ever it can find it, and if that means a person with disabilities falls (or goes without meals or showers) because of it, oh well: unintended byproduct of cost-cutting Necessary Measures!", then people with disabilities know that they have to be extra cautious, to settle for what they have, even when it's not good enough.
But no, those commenters who were sure that there "isn't STILL discrimination against the disabled": I'm sure you're right. I'm just being overly sensitive.
Tuesday, May 01, 2012
My Years of Magical Thinking...
And why I'm calling BS.
There's this idea out there - in the everyday world, in pop culture, in families the world over and sadly still in some medical circles - that you can believe yourself into being well (or that you somehow believed yourself into being sick in the first place). That all that it takes is wanting to be better badly enough, purely enough, consciously enough, something enough for it to somehow "manifest" in your life.
The idea takes numerous forms - there's the curative power of prayer; the school of 'get up off your ass & do something about it, you whiners' (aka the bootstrappers); the 'but you've got nothing to be sad about/tired from/allergic to' zealots; a million symptom-specific diets; holy water & snake oil & pills made from coral only found in the shadow of the wreck of the Lusitania; and the ever adorable 'Oh we all get headaches/sad/tired sometimes, but you don't see me sitting around complaining about it' crowd. Those are just a few off the top of my head - there's probably a thousand more we could come up with together (Feel free to leave your gravest offenders in the comments!) but they all have one thing in common - they take a person's illness or disability and make it not a medical condition, or a failure of society to accommodate the needs of that person - but a personal failing on the part of the individual. They all nullify our personal (individual & cumulative) issues and needs and turn them into something we're doing wrong or not well enough. And I say bullshit.
This sort of blame, grounded in magical thinking, shows itself in everything from the rantings of politicians about benefit scroungers, to the old woman in the parking lot who yells at me for being too young to need a handicapped parking spot, to my super-crunchy sister explaining to me that all illness is rooted in "past personal traumas" and "touch therapy" might be the answer for me. It shows in personal stories of achievement - converts of former patients who swear by whatever method happened to work for them, and preach about it now as if it were the One True Word. I'm happy for them, truly, but can't get over the amount of gall it would take to assume that what worked for you and your illness must, of course, then work for me (or the millions of others of us who share a disease). Just because you started running marathons on a diet consisting solely of cough medicine and peach pits, does not mean it would work as well (or at all) for me. Thanks for telling me about it, now carry on with your business.
But it's never that simple - the fact that there is a peach pit & cough medicine cure out there, and I am not attempting it: that's unacceptable in society's eyes. I should be doing everything I can to fight against my illnesses, even if it's contrary to common sense, defies the constraints of financial, emotional or physical realities, &/or is the least likely antidote to whatever ails me & in fact, would make my problem a million times worse. Society gets to pick if I'm trying hard enough, and {Spoiler Alert} I never will be!!
-----
I was 15 when I first got sick, nowhere near done figuring out what kind of person I wanted to be when I grew up, and everything I thought I knew about my world & who I was just... ended. I wasn't smart anymore, because I would sleep through my classes, and the time I should be doing homework, and miss weeks of school at a time. I wasn't a dancer anymore: after months and months of missing them, on days I could drag myself there, I would go to the one dance class I thought I could manage, do a half-ass job and then curl up in the corner on the gymnastics mats to go to sleep. I'd gone from teaching three days a week & taking my own classes to barely limping through the basic warm-up at the barre.
But no one told me to stop: My doctors said I was very sick, but that I "shouldn't give in", that I should "Do what (I) can." To a fifteen-year-old (well, to fifteen-year-old me, anyways) that was like a challenge - "go until you can't go anymore." And that's exactly what I did: I worked so hard at school (even when I was homeschooling) that when summer came around, I was bedridden. I still can't watch the show tape from that last year, when I lost out on my first solo and instead hobbled through the one number in the recital I had to nearly kill myself dancing through. Afterwards, laying in the wings, waiting for my heartbeat to slow and my vision to come back (looking back it's likely my POTS/NMH issues were a problem even then), I thought to myself: "Well, was that worth dying for?"
But I didn't stop pushing, because everybody told me I shouldn't. My family constantly told me that I just had to keep trying, my teachers said that "surely, someone as smart as you can figure out how to beat this," my friends nagged that I'd been sick long enough, already, hadn't I? I know that they were trying to be encouraging, but it was the only message I heard, that I had to battle, until I won. That it would be like giving up, to say that I might have to live with this illness instead of fighting against it. The doctors made sure I knew that if I started to "act like I was sick" I would only get worse: "Don't give in," they would tell me, "keep fighting." So I did. For (as it turned out, way too many) years.
My parents, armed with the same doctor's advice - "don't let her give into it, because then she could be sick forever"- were as ill-equipped to deal with our new situation as I was. Never mind that I was sick right then and that might have been important to deal with. Nope, the now was always about the fight, and so we spent a good portion of what was left of my teenage years fighting against the CFS, and often against each other, when it seemed to them that I was "giving in" to it: When it got to the point that I couldn't eat, and I lost about 35 pounds like it was water weight, I can remember having screaming matches with my dad at the table where he would say such helpful things as "JUST PUT IT IN YOUR MOUTH AND EAT IT FOR CHRIST'S SAKE!!!" and I just... couldn't. It tasted like ash - everything did - and burned all the way down, where it would sit, heavy as winter boots until my belly revolted and back up it came. I would cry and he would yell that I was making myself sicker, with the crying. Or being in the car on the receiving end of glares from my siblings, when they all wanted to go someplace and I was too exhausted to move, let alone get out of the car again, and my sister closing the door, rolling her eyes and saying "Well, I guess, if you're going to be that "sick", we'll all just stop having fun now" as we drove home.
We didn't know, is my point: Nobody gave me - or them - the skills. Maybe, with something like an aggressive cancer, the doctors would've been right on target - 'fight back, till its gone: take no prisoners, grant no quarter!' But I had something nobody knew what to with, a chronic illness with no known treatment, cause, cure. And so their advice was way off the mark. It was like I was diagnosed with CFS (and later Fibro & POTS & now the diabetes, not to mention the 14 other things in between and the one big question mark they're all still looking for as the Holy Grail) and instead of a treatment plan, with meds to take and dos and don'ts to follow, all they told me is "You have it, but pretend you don't, as much as is possible." And that was some damn bad advice.
It was wrong and dangerous, and it could've been - on more than one occasion for me- deadly. (Turns out ignoring pneumonia is potentially a bad thing: who knew?)
That's why this fallacy of magical thinking gets me so upset - because it took a fifteen-year-old girl who could have learned the skills she needed to manage a chronic illness and continue to live a full (if different) life, and left her helpless, terrified and vulnerable. And blaming herself.
-----
So, I didn't have the skills, or the treatment plan, or the answers, but everybody kept telling me that they were out there: keep trying till you find The Cure. So I tried all the crazy shit that you think you are not desperate enough to go near: pills with high price tags and exorbitant claims; cleansings and energy work and fasting rituals; diets and doing an hour of PT every Friday that takes you until Thursday to recover from; pushing yourself way beyond what your body is actually capable of. The doctors might roll their eyes at my latest endeavor, or be all for it -"couldn't hurt" I had more than one of them tell me, even though they were 100% wrong- but they didn't have anything better to offer, so it was up to me to follow the magical thinking train as far as it would take me.
It goes pretty far, you know: you work so hard at convincing yourself that you're getting better, while your hospitalization rate soars and your immune system falters. You can laugh with the doctors about that "last bit of voodoo you tried" all the while you're planning how you'll scrape up the money for your next. You can fuel that train with all of the self-hatred you accumulate when people tell you that you're just being lazy, or that you're faking, or that if you really, really tried, you could do it. (That's a never ending, renewable resource right there: look, I fixed the economy!)
But in the end, it didn't matter how often I thought maybe this pill was helping or that I just had to make it through the next 14 sessions and the acupuncture would clear everything up. In the end, I was sicker than when I started, discouraged at myself for failing and certain that if I just tried hard enough, like everybody said, I could beat this thing.
---
There's a lot of maybes about my illnesses - maybe if I'd never gotten the mono, it wouldn't have switched on whatever self destruct sequence is probably hiding in my genetic code, or maybe if I'd gone to see a specialist right away s/he would've recognized the problem before it spiraled into today's current chaos. Maybe X or maybe Y. I don't know about any of that.
But there's one certainty about the whole mess: It could've been better. My experience did not have to be as hellish as it often was. It didn't have to be as isolating, and full of blame as it was: Because everybody - from my teachers to my sisters to my grandmother who couldn't understand why I'd cry when she suggested I go to a faith healer - blamed me at some point. I'm not saying it would've been a land of rainbows and puppies - hell I don't buy into magical thinking now, and my life is certainly pretty puppy-less - but it could've been better than what it was.
And that's where society and medicine and the world with all of it's "The power of the Secret of thinking with your wholeheart and wanting it with your entire being" bullshit failed 15-year-old me, and 32-year-old me, and the 3-year-old with learning disabilities that I used to tutor, and my sister who has depression, and basically every disability activist I've ever met; and every person with a disability, and their families and my parents, and, well, the whole world, honestly. It isn't enough to wish it away - that wishes us away, too. It doesn't honor who we are to be told that we're just not doing enough to be well, or that we worried ourselves into being sick, or that if I looked on the bright side more often, I would somehow no longer be allergic to all of the contents of the natural world. It's bullshit is what it is, and I'm going to call you on it, now that I know it for lies.
----
It wasn't until I got to college and started meeting other people with disabilities and allies and advocates and started paying attention to the people who said: "Listen, it might get better: You never know, you might wake up tomorrow and be healed and awesome. But there are ways to make today easier to live through, to be awesome with a chronic illness, and one of them is NOT FIGHTING quite so much. It's accepting that you're sick. You're a sick person, a disabled person, and ... you know what? That's fine, too. You're not lesser, or weaker, or anything negative because you're sick. You're just sick. It's a part of who you are, and you need to deal with it, because this fighting with it is just making everything worse."
I cringe to remember my Freshman self, saying to a professor that I was "Not disabled: just temporarily out of service." She was polite enough not to say anything, but I want to go back and punch myself in the face for that flippant nonsense: I really thought that not claiming part of myself would be beneficial? For who? Was it supposed to be funny? It seems absurd and sad now - I don't even know. I do know that when I finally made myself face the fact that all of this magical thinking was getting me nowhere, was in fact hurting more than it was helping, it was devastating to me: Not being able to cure myself, I must instead of course be a complete failure. (It was this all or nothing attitude that really helped my depression stay around as long as it did, unfortunately.) There was no middle ground for me, and realizing that people were wrong and I wasn't going to be able to think myself better? That all the pushing my body through shit was actually making things worse? It was like stepping out into empty air yet again - I had no idea what could be next for me, if everything I knew how to do - if fighting & believing that it could all just magically go away one day - was wrong.
But once I got past that, once I accepted that truth, I learned so many ways to make my life better, to make it more meaningful, to work towards not just marking time until I got better, but living through that time, because this is my life now. It's a life with chronic illness, and yeah, I'd rather it wasn't, but wishing doesn't make it so, so get to living & dealing with it, because it's a part of my life, but it's not all that I am.
And that's a truth I worked long and hard to find - and it still takes some work to remember that it applies to me - that there's societal constructs at work behind my feeling of just not doing enough to fix myself, and that I'm not really a lazy, layabout who'd rather play on the Internet all day then get a real job. That 16 doctors appointments in the space of three weeks is more than enough, even if they're not giving me the answers I need. That eating french toast today instead of a salad like every other day, and is not the reason I'll obviously never get better. To remember that there are reasonable levels of self-care and coping strategies, and then there's just plain false hope.
And the idea that I might have gotten to that point so much sooner if somebody had been around to say to me "Magical thinking isn't going to cut it. There may a cure out there, but it's probably not going to be found in this guy's car trunk." (True story) "And as far as I can tell, there's nobody around to provide you with a deus ex machina, so get to living with this instead of waiting for it to get gone."
But that's why I talk about magical cures when they pop up in what I'm reading or watching. It's why I get into arguments with the people in my life who dole out advice on seaweed pills along with our shared breakfast. And it's why I'll keep talking about it here. Because somewhere there's a fifteen-year-old girl, with an illness she did nothing to cause and she can do nothing to get rid of. And she deserves to hear the truth. Not the fluffy, Secret-based philosophy of pseudo-cures and self-blame. But the facts: That chronic illness & disability are just another part of life, and you can deal with them, and treat them, and live with them, and even thrive with them - to the best of your ability - but you can't, not ever, think your way out of them.
*Welcome to all the Blogging Against Disability Day readers - I know there's a million great posts to be read, so I really appreciate it if you made it all the way through that! If you're one of my regular readers, please head over to the Goldfish's place, and read some of the other excellent BADD posts: I promise, you'll learn a lot.*
There's this idea out there - in the everyday world, in pop culture, in families the world over and sadly still in some medical circles - that you can believe yourself into being well (or that you somehow believed yourself into being sick in the first place). That all that it takes is wanting to be better badly enough, purely enough, consciously enough, something enough for it to somehow "manifest" in your life.
The idea takes numerous forms - there's the curative power of prayer; the school of 'get up off your ass & do something about it, you whiners' (aka the bootstrappers); the 'but you've got nothing to be sad about/tired from/allergic to' zealots; a million symptom-specific diets; holy water & snake oil & pills made from coral only found in the shadow of the wreck of the Lusitania; and the ever adorable 'Oh we all get headaches/sad/tired sometimes, but you don't see me sitting around complaining about it' crowd. Those are just a few off the top of my head - there's probably a thousand more we could come up with together (Feel free to leave your gravest offenders in the comments!) but they all have one thing in common - they take a person's illness or disability and make it not a medical condition, or a failure of society to accommodate the needs of that person - but a personal failing on the part of the individual. They all nullify our personal (individual & cumulative) issues and needs and turn them into something we're doing wrong or not well enough. And I say bullshit.
This sort of blame, grounded in magical thinking, shows itself in everything from the rantings of politicians about benefit scroungers, to the old woman in the parking lot who yells at me for being too young to need a handicapped parking spot, to my super-crunchy sister explaining to me that all illness is rooted in "past personal traumas" and "touch therapy" might be the answer for me. It shows in personal stories of achievement - converts of former patients who swear by whatever method happened to work for them, and preach about it now as if it were the One True Word. I'm happy for them, truly, but can't get over the amount of gall it would take to assume that what worked for you and your illness must, of course, then work for me (or the millions of others of us who share a disease). Just because you started running marathons on a diet consisting solely of cough medicine and peach pits, does not mean it would work as well (or at all) for me. Thanks for telling me about it, now carry on with your business.
But it's never that simple - the fact that there is a peach pit & cough medicine cure out there, and I am not attempting it: that's unacceptable in society's eyes. I should be doing everything I can to fight against my illnesses, even if it's contrary to common sense, defies the constraints of financial, emotional or physical realities, &/or is the least likely antidote to whatever ails me & in fact, would make my problem a million times worse. Society gets to pick if I'm trying hard enough, and {Spoiler Alert} I never will be!!
-----
I was 15 when I first got sick, nowhere near done figuring out what kind of person I wanted to be when I grew up, and everything I thought I knew about my world & who I was just... ended. I wasn't smart anymore, because I would sleep through my classes, and the time I should be doing homework, and miss weeks of school at a time. I wasn't a dancer anymore: after months and months of missing them, on days I could drag myself there, I would go to the one dance class I thought I could manage, do a half-ass job and then curl up in the corner on the gymnastics mats to go to sleep. I'd gone from teaching three days a week & taking my own classes to barely limping through the basic warm-up at the barre.
But no one told me to stop: My doctors said I was very sick, but that I "shouldn't give in", that I should "Do what (I) can." To a fifteen-year-old (well, to fifteen-year-old me, anyways) that was like a challenge - "go until you can't go anymore." And that's exactly what I did: I worked so hard at school (even when I was homeschooling) that when summer came around, I was bedridden. I still can't watch the show tape from that last year, when I lost out on my first solo and instead hobbled through the one number in the recital I had to nearly kill myself dancing through. Afterwards, laying in the wings, waiting for my heartbeat to slow and my vision to come back (looking back it's likely my POTS/NMH issues were a problem even then), I thought to myself: "Well, was that worth dying for?"
But I didn't stop pushing, because everybody told me I shouldn't. My family constantly told me that I just had to keep trying, my teachers said that "surely, someone as smart as you can figure out how to beat this," my friends nagged that I'd been sick long enough, already, hadn't I? I know that they were trying to be encouraging, but it was the only message I heard, that I had to battle, until I won. That it would be like giving up, to say that I might have to live with this illness instead of fighting against it. The doctors made sure I knew that if I started to "act like I was sick" I would only get worse: "Don't give in," they would tell me, "keep fighting." So I did. For (as it turned out, way too many) years.
My parents, armed with the same doctor's advice - "don't let her give into it, because then she could be sick forever"- were as ill-equipped to deal with our new situation as I was. Never mind that I was sick right then and that might have been important to deal with. Nope, the now was always about the fight, and so we spent a good portion of what was left of my teenage years fighting against the CFS, and often against each other, when it seemed to them that I was "giving in" to it: When it got to the point that I couldn't eat, and I lost about 35 pounds like it was water weight, I can remember having screaming matches with my dad at the table where he would say such helpful things as "JUST PUT IT IN YOUR MOUTH AND EAT IT FOR CHRIST'S SAKE!!!" and I just... couldn't. It tasted like ash - everything did - and burned all the way down, where it would sit, heavy as winter boots until my belly revolted and back up it came. I would cry and he would yell that I was making myself sicker, with the crying. Or being in the car on the receiving end of glares from my siblings, when they all wanted to go someplace and I was too exhausted to move, let alone get out of the car again, and my sister closing the door, rolling her eyes and saying "Well, I guess, if you're going to be that "sick", we'll all just stop having fun now" as we drove home.
We didn't know, is my point: Nobody gave me - or them - the skills. Maybe, with something like an aggressive cancer, the doctors would've been right on target - 'fight back, till its gone: take no prisoners, grant no quarter!' But I had something nobody knew what to with, a chronic illness with no known treatment, cause, cure. And so their advice was way off the mark. It was like I was diagnosed with CFS (and later Fibro & POTS & now the diabetes, not to mention the 14 other things in between and the one big question mark they're all still looking for as the Holy Grail) and instead of a treatment plan, with meds to take and dos and don'ts to follow, all they told me is "You have it, but pretend you don't, as much as is possible." And that was some damn bad advice.
It was wrong and dangerous, and it could've been - on more than one occasion for me- deadly. (Turns out ignoring pneumonia is potentially a bad thing: who knew?)
That's why this fallacy of magical thinking gets me so upset - because it took a fifteen-year-old girl who could have learned the skills she needed to manage a chronic illness and continue to live a full (if different) life, and left her helpless, terrified and vulnerable. And blaming herself.
-----
So, I didn't have the skills, or the treatment plan, or the answers, but everybody kept telling me that they were out there: keep trying till you find The Cure. So I tried all the crazy shit that you think you are not desperate enough to go near: pills with high price tags and exorbitant claims; cleansings and energy work and fasting rituals; diets and doing an hour of PT every Friday that takes you until Thursday to recover from; pushing yourself way beyond what your body is actually capable of. The doctors might roll their eyes at my latest endeavor, or be all for it -"couldn't hurt" I had more than one of them tell me, even though they were 100% wrong- but they didn't have anything better to offer, so it was up to me to follow the magical thinking train as far as it would take me.
It goes pretty far, you know: you work so hard at convincing yourself that you're getting better, while your hospitalization rate soars and your immune system falters. You can laugh with the doctors about that "last bit of voodoo you tried" all the while you're planning how you'll scrape up the money for your next. You can fuel that train with all of the self-hatred you accumulate when people tell you that you're just being lazy, or that you're faking, or that if you really, really tried, you could do it. (That's a never ending, renewable resource right there: look, I fixed the economy!)
But in the end, it didn't matter how often I thought maybe this pill was helping or that I just had to make it through the next 14 sessions and the acupuncture would clear everything up. In the end, I was sicker than when I started, discouraged at myself for failing and certain that if I just tried hard enough, like everybody said, I could beat this thing.
---
There's a lot of maybes about my illnesses - maybe if I'd never gotten the mono, it wouldn't have switched on whatever self destruct sequence is probably hiding in my genetic code, or maybe if I'd gone to see a specialist right away s/he would've recognized the problem before it spiraled into today's current chaos. Maybe X or maybe Y. I don't know about any of that.
But there's one certainty about the whole mess: It could've been better. My experience did not have to be as hellish as it often was. It didn't have to be as isolating, and full of blame as it was: Because everybody - from my teachers to my sisters to my grandmother who couldn't understand why I'd cry when she suggested I go to a faith healer - blamed me at some point. I'm not saying it would've been a land of rainbows and puppies - hell I don't buy into magical thinking now, and my life is certainly pretty puppy-less - but it could've been better than what it was.
And that's where society and medicine and the world with all of it's "The power of the Secret of thinking with your wholeheart and wanting it with your entire being" bullshit failed 15-year-old me, and 32-year-old me, and the 3-year-old with learning disabilities that I used to tutor, and my sister who has depression, and basically every disability activist I've ever met; and every person with a disability, and their families and my parents, and, well, the whole world, honestly. It isn't enough to wish it away - that wishes us away, too. It doesn't honor who we are to be told that we're just not doing enough to be well, or that we worried ourselves into being sick, or that if I looked on the bright side more often, I would somehow no longer be allergic to all of the contents of the natural world. It's bullshit is what it is, and I'm going to call you on it, now that I know it for lies.
----
It wasn't until I got to college and started meeting other people with disabilities and allies and advocates and started paying attention to the people who said: "Listen, it might get better: You never know, you might wake up tomorrow and be healed and awesome. But there are ways to make today easier to live through, to be awesome with a chronic illness, and one of them is NOT FIGHTING quite so much. It's accepting that you're sick. You're a sick person, a disabled person, and ... you know what? That's fine, too. You're not lesser, or weaker, or anything negative because you're sick. You're just sick. It's a part of who you are, and you need to deal with it, because this fighting with it is just making everything worse."
I cringe to remember my Freshman self, saying to a professor that I was "Not disabled: just temporarily out of service." She was polite enough not to say anything, but I want to go back and punch myself in the face for that flippant nonsense: I really thought that not claiming part of myself would be beneficial? For who? Was it supposed to be funny? It seems absurd and sad now - I don't even know. I do know that when I finally made myself face the fact that all of this magical thinking was getting me nowhere, was in fact hurting more than it was helping, it was devastating to me: Not being able to cure myself, I must instead of course be a complete failure. (It was this all or nothing attitude that really helped my depression stay around as long as it did, unfortunately.) There was no middle ground for me, and realizing that people were wrong and I wasn't going to be able to think myself better? That all the pushing my body through shit was actually making things worse? It was like stepping out into empty air yet again - I had no idea what could be next for me, if everything I knew how to do - if fighting & believing that it could all just magically go away one day - was wrong.
But once I got past that, once I accepted that truth, I learned so many ways to make my life better, to make it more meaningful, to work towards not just marking time until I got better, but living through that time, because this is my life now. It's a life with chronic illness, and yeah, I'd rather it wasn't, but wishing doesn't make it so, so get to living & dealing with it, because it's a part of my life, but it's not all that I am.
And that's a truth I worked long and hard to find - and it still takes some work to remember that it applies to me - that there's societal constructs at work behind my feeling of just not doing enough to fix myself, and that I'm not really a lazy, layabout who'd rather play on the Internet all day then get a real job. That 16 doctors appointments in the space of three weeks is more than enough, even if they're not giving me the answers I need. That eating french toast today instead of a salad like every other day, and is not the reason I'll obviously never get better. To remember that there are reasonable levels of self-care and coping strategies, and then there's just plain false hope.
And the idea that I might have gotten to that point so much sooner if somebody had been around to say to me "Magical thinking isn't going to cut it. There may a cure out there, but it's probably not going to be found in this guy's car trunk." (True story) "And as far as I can tell, there's nobody around to provide you with a deus ex machina, so get to living with this instead of waiting for it to get gone."
But that's why I talk about magical cures when they pop up in what I'm reading or watching. It's why I get into arguments with the people in my life who dole out advice on seaweed pills along with our shared breakfast. And it's why I'll keep talking about it here. Because somewhere there's a fifteen-year-old girl, with an illness she did nothing to cause and she can do nothing to get rid of. And she deserves to hear the truth. Not the fluffy, Secret-based philosophy of pseudo-cures and self-blame. But the facts: That chronic illness & disability are just another part of life, and you can deal with them, and treat them, and live with them, and even thrive with them - to the best of your ability - but you can't, not ever, think your way out of them.
*Welcome to all the Blogging Against Disability Day readers - I know there's a million great posts to be read, so I really appreciate it if you made it all the way through that! If you're one of my regular readers, please head over to the Goldfish's place, and read some of the other excellent BADD posts: I promise, you'll learn a lot.*
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