I'm doing that thing where I'm taking a little thing - the inability to get a prescription refilled in a timely manner - and turning it into a big, huge thing - EVERYTHING IN MY LIFE IS FALLING TO SHIT RIGHT NOW. So, if the pharmacist at Rite Aid wonders why that lady who has called everyday this week just hung up while obviously holding back tears: there's her answer.
Zach's new hospital situation is crummy: I don't especially like the hospital, but that's fine; having to learn all new office and blood and nurse people sucks, but I've done it a million times, and can manage again; the hospital itself is a labyrinth that I traveled during the first days of my illness, and being there brings an odd sense of deja vu added with the feeling of 'holy shit I can't believe I'm still dealing with this mess' (since, when I originally fell ill, they told me it would only last a few months); But the main problem is getting in contact with him is near to impossible.
If there's one thing I've got down at this point, it's how to keep my meds refilled - I know which ones have to be written and mailed (or picked up) and which can be called in, and I USED to know approximately how long it would take from phone call to fax to authorization to filling to pick up for most of my regular meds. This new place?
I might as well be calling him in Hades, leaving messages with Cerberus, or sending them via Charon's freaking ferryboat.
I left a message last Thursday, saying who I was and what I needed, knowing I had about 5 days worth of meds left. I heard back nothing ... Ok. So I called back on Monday, and left another message. Tuesday, I called Rite Aid, and since they still had no new prescription, I called again. I repeated this again on Wednesday and Thursday - when I did finally manage to speak to a nurse who assured me that Zack was in the office that day, and she would make sure he sent the refill to the pharmacy. (I knew he was in that office on Thursdays, hence why I called LAST Thursday, but... moving on.)
This morning: Rite Aid reports, still nothing. I called and talked to the same nurse. She said she would get the message to Zack at his other office and get back to me. (I do not have the phone # for the other office, which is a HUGE problem, I realize now, but how was I supposed to know that then?) Hours pass; No call from Rite Aid or the nurse. Now it's 4:00 on a Friday afternoon, I'm out of pills, and I call again, leave a message.
5 minutes later, she calls me back: She spoke to Zack who said he sent the rx yesterday, but will resend it right now. Thanks and gratitude all around: Have a good weekend!
No confirming call from Rite Aid.... so, at quarter to five, I call them, and the pharmacist says "nope." WHILE I AM ON THE PHONE WITH THEM, I get the Robo-call from Rite Aid, which I answer: "Your recent prescription requires additional information from your doctor before we can fill it. Please call your local Rite Aid" So I call them back, and a new, very cheery pharmacist puts me on hold. And plays cheesy 80s music in my ear for 10 minutes, and now it's after five on a Friday, and ...
"We don't have any refills left on that prescription."
No, see, the reason the robot called me is because my doctor just called the refill in, otherwise it would have no reason to call me. More hold time, more cheesy 80s music.
And now - I freely admit - I am beyond frustrated. I am ready to lose my mind because this isn't even one of my complicated drugs: this is a base line drug! This is a "I can barely function, and this drug gets me to barely" drug. This is not some miracle cure I'm chasing: this is a drug I have been on for 9 years, that I refill every single month of those 9 years, and now it's after 5:30 on a freaking Friday, and you're going to tell me...
"You should call your doctor's office and have him resend it. Sometimes this happens."
And I can tell at this point, that I'm not going to be able to continue the conversation. I'm just. Done. I'm not a person who gets mad and starts screaming (generally): when I get upset the tears gather behind my eyes and my throat gets clumpy and I start to have to swallow and sniff a lot, and take a lot of deep breaths and blink repeatedly and hope that the other person doesn't notice that I'm probably going to start bawling at any minute.
I don't think I hid it very well, because the cheery pharmacist lady started apologizing "Sometimes this just happens, you know, it gets lost between us and them... I'm sorry? Maybe he has the wrong number... call him and try again."
And what I say is "I... just. This is ridiculous. Ah. I. Ok."
But what I mean is "IT IS ALMOST 6 O'CLOCK ON A FRIDAY NIGHT, AND HE'S GONE: HIS OFFICE IS EMPTY, AND THERE'S GOING TO BE NOBODY THERE TO RESEND THE DAMN THING, AND THIS SHOULDN'T BE HAPPENING BECAUSE I DID EVERYTHING RIGHT! I CALLED AHEAD AND I PLANNED IT OUT AND I EVEN GAVE YOU ALL ENOUGH LEAD TIME TO BE STUPID ASSHOLES ABOUT IT, AND IT'S STILL WORKED OUT SO THAT I DON'T HAVE THE MEDICINE I NEED AND THERE'S NO WAY FOR ME TO GET IT UNTIL MONDAY? I'VE BEEN TAKING HALF OF MY DOSE JUST SO I DIDN'T RUN OUT THIS WEEK ALREADY, AND NOW I WON'T HAVE ANY?? I JUST DON'T HAVE THE ENERGY TO DEAL WITH THIS KIND OF NONSENSE! I HATE THE WHOLE WORLD RIGHT NOW."
But I don't say any of that. I hang up and I burst into tears (and then I get mad at myself for bursting into tears because it helps absolutely nothing) and then I take a lot of deep breaths and I sniff and blow my nose and then complain to Twitter about evolution and then I come here and write this. And now it's after six o'clock on a Friday night, and I have no idea what I'm supposed to do next, but I have to go leave some (non-bawling, hopefully) messages on people's voice mails, so that somebody will help me with this before I lose what's left of my marbles.
---- And... I left a message AGAIN, but the office is closed. I won't hear back, and it's technically not an emergency, so I don't want to call the cancer care line (because that's his service: he's an oncologist). PLUS, the pills are 'controlled', so, even though I've been on them for 9 freaking years, AND you're not supposed to 'suddenly stop' them, they can't give me enough to last till Monday morning.
So, I'm betting I'm going to have the Best Weekend Ever.
I'm already taking a half dose, and it's reminding me that these pills do actually help a little. I am not looking forward to no dose at all. Off to scour all my backups - the travel pills, the purse pills, the bug out kit, - where I know there will be at least one or two hiding, and that'll bring me to Monday without having to no dose at all, hopefully.
But I think you can see why I'm hating the whole world right now. this should be so easy! it is not that hard! all it requires is four or five people to be doing their jobs at the same time ~ but, still - Here I am. Hitting publish, eating a homemade english muffin pizza, and pretending I didn't just spend an hour crying about people being unhelpful.
Showing posts with label sucks. Show all posts
Showing posts with label sucks. Show all posts
Friday, February 28, 2014
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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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.
---
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.
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!)
Friday, November 18, 2011
Friday Night Lite
Don't especially feel like writing tonight. Don't especially feel like doing anything but sitting in the rocking chair and wishing it was somehow powered by something other than me, because rocking seems like it would take too much energy.
So here's some stuff that other people I feel like sharing this week, just because.
On the subject of families and traditions:
“If you look deeply into the palm of your hand, you will see your parents and all generations of your ancestors. All of them are alive in this moment. Each is present in your body. You are the continuation of each of these people.” — Thich Nhat Hanh
Lifenut talks about Snoopy Thanksgiving at her house, and the importance of building traditions.
"You can’t begin a tradition without making some promises to tomorrow. Tradition implies a respect for the past and a dream of the future bright and open. It’s recognizing something good and wanting that same goodness for people they won’t meet for years ~ their children."
In the same vein, there's this Chuck & Beans comic, from the Hallmark Shoebox blog -
And... that's all I have got for you tonight, because I am dragging. Just plum worn out, from trying to accomplish regular things, like normal people, and getting about 1/1400th of what I wanted to do accomplished. :shrug: Must stop trying to make words work well together, because none of them even really make sense to me anymore. Nighty Night!
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