I know it's been a couple of weeks ~ I'll claim the first two do to just complete exhaustion, and the last two because things are pretty fucked up here, and I'd hoped to come back and be able to say "Thank you so much for your kind thoughts" and then move on to happier things. But I don't seem to have any happier things, right now. Which is not just to say that I'm f'ed up (although I am): there's a whole bunch of family shit that's gone down that's beyond messed up, and somewhere between my grief and the situation and everybody else's grief and confusion and all of our individual issues, it feels like my family is basically coming apart at the seams. Not that those stitches were all that tight two months ago, but they just sort of burst the week of my grandmother's funeral, and I'm at a complete loss as to how to pull them back together again.
I don't even know where I am or what I'm doing, at this point, besides making it through the next fucking minute without falling apart. And I'm not always doing a bang up job on that, to be honest. I'm back at our house, but it's not home - it really never was, only maybe I was better at pretending before I watched my grandmother die and realized that I need to do more than mark my time here. I can't seem to talk to anybody without causing a secondhand fight, can't seem to get anybody to listen to me at all, can't seem to connect with the people who've offered to help, even when I want to (and I don't always want to: it seems like too much explaining, mostly). I feel like exploding just about every minute of every day, or, I feel completely absent and numb - it's one or the other, seems like.
My dad threw my sister and brother-in-law out of the house, the night before my grandmother's funeral. Nobody told me what the hell was going on, because, I don't know they thought I would be too upset to notice that people weren't talking to each other? I don't know. So I got the lowlights third and fourth hand, then when I tried to talk to people, it was a disaster and didn't make anything any clearer for them or for me.
My mom left my dad, then came back, but only because she didn't have anywhere else to go, and then, later, because she wouldn't leave my sister and brother-in-law in the house with just him. This was all in the days immediately after we had just buried my grandmother, so I will admit that I did not have all cylinders going. I mostly wanted (still want) to curl up in a ball and ignore everything, because it takes so much energy, and I am plum out.
My dad says the stress of being targeted at work (and, yes, he is being targeted at work) made him snap and... a whole load of bullshit that basically means it's not his fault, but maybe yes, he might admit that he was wrong and 'an asshole' (What he won't cop to, is that this happens All The Damn Time, and nobody feels safe around him/trusts him anymore because he's a bully). My sister & brother-in-law immediately started looking for a new place, because, hell: who wants to live like that? They've been thrown out twice in the matter of a year for Doing. Nothing. Wrong. And let's be clear - they didn't do shit, he just took it out on them. I told my mother while I was still at Grandmother's house, that I didn't want to be here either... that I would be looking for a new place as soon as I could. {Of course, that was because I forgot that I couldn't place emotional well-being above money, health and other issues without there being major sacrifices of money and health and other things, but I'm still determined to do it} My mother told him she was leaving too, although it would be better for everybody if HE just left. He refused/refuses to leave.
So today my sister and brother-in-law are signing a lease for their new place, at the worst possible time for them bc my sister is trying to wean off her meds so that they can get pregnant, and she could really use some backup (which is just when you should be forced to move away from people who can back you up). She's hurt and mad at my mom for her response to this whole ball of bullshit, which I can't seem to talk to either of them about, because their both freezing me out when it comes to that. She might even be mad at me, and since she's the one who reads this blog I'm only going to say that I hope she's not, because I feel like I'm on her side, but if she is, I hope she'll tell me so I can try to fix it.
My dad and I had a whole discussion about how mad I am at him the other day, and how it's his fault that SisterJ & B-I-L are moving and that I'm looking for a place, and that Mom is probably looking for a place too, and when my mom asked him what he got out of it he told her that he "has a big heart but doesn't use it." Which was said once, in the midst of a three hour discussion about how badly he is screwing things up and all the things he is ruining by his behavior, and how hard it's going to be once he realizes how badly he's damaged people he's supposed to care about and how I'm too old for this shit and I'm just not sticking around anymore to watch him bully people (or to be bullied) and how he's being completely selfish, but that's what we all expect him to be at this point, so that we don't even talk to him about our shit anymore and a huge rant about how he's a total hypocrite and totally ignores the people in our family and expects us to be there for him and how he never fucking listens ... anyways. What he took out of all of that was me saying he had a big heart, which just proves my point about him never listening, and that I really need to get the hell out of here.
Mom and I have talked - or sort of talked - about what she's going to do: she says she's going and she's done, and all of that. But I don't know: she still seems undecided to me, and I don't know how much of that is the fact that she's changing her meds, and she's still grieving for my grandmother, too, and she seems to be leaning waaay closer to the numb side of things than I am. Of course, complicating all of that is the fact that she's my PCA, and she does a lot more for me than the hours the state provides for her, which is pretty simple when you're living in the same house, but a hell of a lot more complicated once I find somewhere else to live.
Which doesn't even mention that moving changes everything for me, financially - I have to notify the SSI people, and Mass Health (my insurance) and the PCA program, and everybody does a whole new evaluation and yippee: more energy I don't have. Plus, I can't afford any place to actually live on what my SSI is currently, so I have to apply for housing stipends, which means that the already complicated task of finding accessible housing (and granted, I can use non-100%accessible bathrooms, which puts me a step above other househunters with disabilities) all that much more complicated, because now I have to look for accessible housing that takes waivers/stipends from the government. It's so much fun so far!
But here's the thing, as every fucking thing seems to crumble around me (which you could tell only by the fact that I've cursed like five times in this post, when I usually don't ever), I learned a lot about myself this summer, being with Grandmother during those five months. I learned that I can handle a lot more shit than I thought I could, even if I have to breakdown in tears when nobody is looking. And even if I shouldn't have to handle any of this, because it's all ridiculous and I don't want to have to deal with it, because it's hard: even though it's ridiculous and hard and stressful and I Don't Want To, I'm going to be able to do it. I'm going to drag myself and my family through it, and eventually we'll all come out the other side, having met the challenge.
Being a grown-up sure does suck, you guys.
Showing posts with label Suckit. Show all posts
Showing posts with label Suckit. Show all posts
Saturday, October 06, 2012
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
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, February 17, 2012
Well, that was fun
So yesterday, my dad called the cops on my sister, her husband, my mother & I.
He called the cops, and told them we were "verbally assaulting him in his own home."
By which he meant, we were telling the fucking truth, in our own homes.
The cop pretty much shrugged his shoulders when he got there - we had done nothing actionable, and it was, in fact his behavior that was out of bounds: I know I never uttered a single curse, and neither did my sister. My mom did, but that was just repeating what he'd said about her, so that doesn't really count. And my brother in law, who is the (I can't emphasize this enough, honestly) most peaceful person ever (like, I've seen him mad may three times in the past 5 years, and even when he's mad, he's still pretty calm) had to go outside and stand in the cold to keep himself from ... I don't even know what.
I know what I wanted to do, which was rage and vomit and punch his face in and break the goddamn wine bottle into a million tiny little pieces and cry and curl up into a ball and pack all my shit immediately and move into the cardboard box that is my only other option and scream in his face and drag him to a psychiatrist and tie him into a chair & force him to watch every episode of Intervention ever. (For the record, I did at least two of those things, but they weren't the fun ones.)
The cops told us "families fight" and told him "if you're an asshole when you drink" (Oh crap, I guess I did curse: I specifically told the cops that he was an asshole when he drinks, but it still doesn't count because I didn't curse at him), "then don't do that anymore." He did not get the outcome he wanted, (which was them making us leave, I guess), and then kept saying how embarrassing it was that it had happened.
It didn't just happen: You called the cops because we weren't backing down (again) about your ridiculous, abusive behavior. You were the one who reacted like an ass because someone dared to question you about your drinking. You were the one who went on the attack. I wasn't embarrassed at all, to be honest. A little let down that I couldn't say "Listen, if he opens his mouth again, I'm going to do something that is worth going to jail for" or "Honestly? He told my mother to go fuck herself, my sister that she was a pill popping control freak, and me that I was a useless piece of shit: please, just take him with you."
I know I've talked about his drinking here before - about my issues with being lucky enough to be blessed with three alcoholic parents, in particular, so if you've been around, you know it's a problem.* I probably don't talk about it as much as I should, because - no matter that I have no fault in it, and there's nothing I can do to stop it - it feels shameful, it feels like I should keep it quiet. And, to be honest, it's a little embarrassing because I can't just move out and put myself in a better environment: I am dependent upon my family, financially.
I also try not to say things that hurt people's feelings here, even though they don't read it. (And hopefully never will.) But the truth is the truth, and I'm sick of pretending that this is not a life or death, you are ruining our family type of deal.
The fight last night was vicious. He has this ability to take out the sharpest arrow in his arsenal, hone it to its finest point, and hit your most vulnerable spot dead center. Tell my mom she's a drunk (although saying "you're a worse alcoholic than I am" probably doesn't make the point you were hoping for); tell my sister that she "moved in and took over", because you know she's overly sensitive about having to live at home; tell me that I "contribute nothing but a bunch of dirty dishes", because you know it wounds me that I can't do things around the house to help out. Make sure you dip all those arrows in as much vile poison as they can hold, before you send them. That's his way.
And then, THEN, he rants and raves about how he has no place in this family, how he wants to be left the fuck alone, how there are no relationships left for him with us, and how that's all our fault.
It probably is my fault that I don't want to give you more ammunition to use against me. Probably is my fault that I can't feel safe enough in my own home to come out to the kitchen if I know you're out there drinking. Definitely is my fault that I've been locking myself in my room at night, because I don't want to be around you, because I know if I go out there I'm not going to be able to hold my tongue, and you're not going to be able to hold your temper, and we wind up right back where we are now: You got to yell and scream and curse and stab at people with your insults, and the rest of us get to wander around dazed and betrayed, stunned that we let ourselves get hurt again. Yeah: that all seems like my fault.
It's definitely my mom's fault if she's "a cold, unfeeling bitch", because everybody wants to be close to someone who makes them feel like shit. It's my sister's fault that she's not willing to "forget about what happened before", even though it was traumatizing to everyone (including you), and you made promises that you never kept. It's definitely my brother-in-law's fault that he had to start shoving all his belongings in an empty laundry basket because god forbid someone should treat him or his wife with love, courtesy or respect, even though they do so much for you.
The thing is, I know, in his mind, that he's the victim in all this. I know that because he stated it very clearly, over and over and over again last night: he was not going to be fucking apologizing for anything he said, if anything he was owed the apology from us. Because we started it, we attacked him, and all he was doing was "cooking, drinking and minding his own fucking business." Never mind that that business included doing the thing you promised us you wouldn't do: we don't have the "right" to hold you accountable for that. Never mind that once someone did call you on your bullshit you started yelling, calling people names, threatening them, using your place as "the moneymaker" to try to bully us into shutting up, trying to throw us out of the house. That's all acceptable behavior, right?
He didn't go to work today (he "didn't sleep well"), and now he's wandering around upstairs pouting, probably/I'm 99.99% sure. That's too damn bad: I don't have any answers for you - you want a place in this family you better figure out a way to fix things, because I am D O N E trying to figure it out for you. Yeah: I love you. Yeah: I'll miss you if you have to go. But you can't stay like this. Or I can't... One of us is going to have to make some real fucking changes. And, as far as I can tell, only one of us has done anything wrong.
And it sure as hell isn't me.
Sticking up for myself, my sister, my mother and my family? Not wrong.
Calling your behavior abusive when it is? Not wrong. (And not "verbal assault" either, asshole.)
Dumping your precious wine down the sink? Probably a little bit wrong, but only because I lost my cool there: should've stayed calmer. The dumping part I'm ok with, because Fuck That Shit.
Ignoring you now, even though I know you're just waiting for me to say something, anything, so you can either walk right in or stomp all over me again? Not wrong.
Let me make this 300000% clear - to myself, and to the sister who needs to hear it, and just happens to read my blog - WE DID NOTHING WRONG. It is not ok to say the things he said, no matter if we started the argument - we didn't say anything out of bounds to him, but he certainly did to us. His bullying is NOT OUR FAULT. THE END.
Of course, it feels like it could be our fault. Her fault for saying something in the first place, she says; my fault for not just walking away and letting it drop, I think. But that's just some textbook Over Developed Sense of Responsibility right there. Over time, everything feels like our fault - when people are happy, when they're not, how they act because of their mood - all of that is not in our control, but it feels like it should be.
Example: Last night's big blow out (which follows our last really big blow out by only 6 months, with about 3 less major ones in between) came immediately following his vacation, last week. That's 9 days of holding your breath, tiptoeing around, hiding yourself in your room (or at work, or in the cellar, or at someone else's house: Hell I even stayed later at the HOSPITAL so I wouldn't have to come home) so that you don't accidentally say something to set him off. He, of course, doesn't see it like that, but the rest of us do. If I'm going to keep a fight from happening I either have to a)pretend that I'm fine with the drinking and drunk him and all that comes along with that (overly affectionate fakeness, pushing food on you repeatedly, an inability to take no for an answer about anything) or b) not be in the same room with him. I chose, for as much as I was able, option b. For nine days. My sister and her husband ate with him more, choosing lite option A and a huge dose of option B (cellar time ALL NIGHT LONG). And my mom, well she usually can't get away with B, and even though she doesn't do a good job of pretending (i.e: we can all tell she's pissed off at him), he doesn't really notice, so that's the way our week went.
It was only after all that shit that my sister came home from work yesterday and called him on his drinking (A bit of an explanation first: following last ginormous traumatizing fight, he swore off drinking. That lasted a week. Since then he has told us that he won't drink at all. Then he changed it to "I won't drink when I'm cooking" Then it was "I won't have more than 1 glass/2 glasses/3 glasses a night" Last night he was at 2.5 glasses when she walked in). And then spent the rest of the night crying, saying she shouldn't have started anything.
She didn't start it, and I want her to get that. (Hi. I know you get it, but you don't feel it. That's ok, too, but just so you know: I know this wasn't your fault.) He can lay the blame at our feet - hers for daring to say something, mine for not shutting my mouth when he wanted me to, my mom's for not sticking up for him "while I was being assaulted" - but we all know the truth about where it goes. This is his fault, and that's all there is too it.
Another sister and I were talking recently, about babies. About how much we want them and don't have them, and are scared it may never happen for us. (Which, let's not talk about that right now) And she said something about never letting her kids sleep over, out of fear of what his moods would be like, and it sort of killed me (because I love my niece and nephews so much and would hate not to be able to spend time with any of them), and at the same time I understood perfectly. I want a baby more than anything, but I would never bring it into this house the way it is right now. Never.
So don't give me all this shit about how you just can just "cook, and drink, and mind my own fucking business", because it is my business. Because I love you, and because I love them, and because, god damn it I'm trying really fucking hard to love myself. And I can't love a person who lets other people walk all over them - or her family. So, I know you're going to do as you please (who knows it better than me**), but it's not going to be crushing me anymore. It's not going to be hurling abuse at the people I love anymore. And if that means that I've lost two fathers to alcohol, I'm going to say that that really sucks. And I'm going to be horribly sad. But I'm not going to lose myself just so you can be a happy drunk.
*And I'd just like to say that my Mom, whose own issues with alcohol have been pretty intense and troubling, has been sober for almost four months now, and I couldn't be prouder of her. Yes, it was a decision she made based on medical necessity, but I think every addict's decision to get sober is medically necessary, and she's working really hard on it, which is amazing.
**My biological father slipped into his alcoholism sometime before I 9, and our relationship was rocky from that point on. Eventually, 11 years ago this July, it took his life.
He called the cops, and told them we were "verbally assaulting him in his own home."
By which he meant, we were telling the fucking truth, in our own homes.
The cop pretty much shrugged his shoulders when he got there - we had done nothing actionable, and it was, in fact his behavior that was out of bounds: I know I never uttered a single curse, and neither did my sister. My mom did, but that was just repeating what he'd said about her, so that doesn't really count. And my brother in law, who is the (I can't emphasize this enough, honestly) most peaceful person ever (like, I've seen him mad may three times in the past 5 years, and even when he's mad, he's still pretty calm) had to go outside and stand in the cold to keep himself from ... I don't even know what.
I know what I wanted to do, which was rage and vomit and punch his face in and break the goddamn wine bottle into a million tiny little pieces and cry and curl up into a ball and pack all my shit immediately and move into the cardboard box that is my only other option and scream in his face and drag him to a psychiatrist and tie him into a chair & force him to watch every episode of Intervention ever. (For the record, I did at least two of those things, but they weren't the fun ones.)
The cops told us "families fight" and told him "if you're an asshole when you drink" (Oh crap, I guess I did curse: I specifically told the cops that he was an asshole when he drinks, but it still doesn't count because I didn't curse at him), "then don't do that anymore." He did not get the outcome he wanted, (which was them making us leave, I guess), and then kept saying how embarrassing it was that it had happened.
It didn't just happen: You called the cops because we weren't backing down (again) about your ridiculous, abusive behavior. You were the one who reacted like an ass because someone dared to question you about your drinking. You were the one who went on the attack. I wasn't embarrassed at all, to be honest. A little let down that I couldn't say "Listen, if he opens his mouth again, I'm going to do something that is worth going to jail for" or "Honestly? He told my mother to go fuck herself, my sister that she was a pill popping control freak, and me that I was a useless piece of shit: please, just take him with you."
I know I've talked about his drinking here before - about my issues with being lucky enough to be blessed with three alcoholic parents, in particular, so if you've been around, you know it's a problem.* I probably don't talk about it as much as I should, because - no matter that I have no fault in it, and there's nothing I can do to stop it - it feels shameful, it feels like I should keep it quiet. And, to be honest, it's a little embarrassing because I can't just move out and put myself in a better environment: I am dependent upon my family, financially.
I also try not to say things that hurt people's feelings here, even though they don't read it. (And hopefully never will.) But the truth is the truth, and I'm sick of pretending that this is not a life or death, you are ruining our family type of deal.
The fight last night was vicious. He has this ability to take out the sharpest arrow in his arsenal, hone it to its finest point, and hit your most vulnerable spot dead center. Tell my mom she's a drunk (although saying "you're a worse alcoholic than I am" probably doesn't make the point you were hoping for); tell my sister that she "moved in and took over", because you know she's overly sensitive about having to live at home; tell me that I "contribute nothing but a bunch of dirty dishes", because you know it wounds me that I can't do things around the house to help out. Make sure you dip all those arrows in as much vile poison as they can hold, before you send them. That's his way.
And then, THEN, he rants and raves about how he has no place in this family, how he wants to be left the fuck alone, how there are no relationships left for him with us, and how that's all our fault.
It probably is my fault that I don't want to give you more ammunition to use against me. Probably is my fault that I can't feel safe enough in my own home to come out to the kitchen if I know you're out there drinking. Definitely is my fault that I've been locking myself in my room at night, because I don't want to be around you, because I know if I go out there I'm not going to be able to hold my tongue, and you're not going to be able to hold your temper, and we wind up right back where we are now: You got to yell and scream and curse and stab at people with your insults, and the rest of us get to wander around dazed and betrayed, stunned that we let ourselves get hurt again. Yeah: that all seems like my fault.
It's definitely my mom's fault if she's "a cold, unfeeling bitch", because everybody wants to be close to someone who makes them feel like shit. It's my sister's fault that she's not willing to "forget about what happened before", even though it was traumatizing to everyone (including you), and you made promises that you never kept. It's definitely my brother-in-law's fault that he had to start shoving all his belongings in an empty laundry basket because god forbid someone should treat him or his wife with love, courtesy or respect, even though they do so much for you.
The thing is, I know, in his mind, that he's the victim in all this. I know that because he stated it very clearly, over and over and over again last night: he was not going to be fucking apologizing for anything he said, if anything he was owed the apology from us. Because we started it, we attacked him, and all he was doing was "cooking, drinking and minding his own fucking business." Never mind that that business included doing the thing you promised us you wouldn't do: we don't have the "right" to hold you accountable for that. Never mind that once someone did call you on your bullshit you started yelling, calling people names, threatening them, using your place as "the moneymaker" to try to bully us into shutting up, trying to throw us out of the house. That's all acceptable behavior, right?
He didn't go to work today (he "didn't sleep well"), and now he's wandering around upstairs pouting, probably/I'm 99.99% sure. That's too damn bad: I don't have any answers for you - you want a place in this family you better figure out a way to fix things, because I am D O N E trying to figure it out for you. Yeah: I love you. Yeah: I'll miss you if you have to go. But you can't stay like this. Or I can't... One of us is going to have to make some real fucking changes. And, as far as I can tell, only one of us has done anything wrong.
And it sure as hell isn't me.
Sticking up for myself, my sister, my mother and my family? Not wrong.
Calling your behavior abusive when it is? Not wrong. (And not "verbal assault" either, asshole.)
Dumping your precious wine down the sink? Probably a little bit wrong, but only because I lost my cool there: should've stayed calmer. The dumping part I'm ok with, because Fuck That Shit.
Ignoring you now, even though I know you're just waiting for me to say something, anything, so you can either walk right in or stomp all over me again? Not wrong.
Let me make this 300000% clear - to myself, and to the sister who needs to hear it, and just happens to read my blog - WE DID NOTHING WRONG. It is not ok to say the things he said, no matter if we started the argument - we didn't say anything out of bounds to him, but he certainly did to us. His bullying is NOT OUR FAULT. THE END.
Of course, it feels like it could be our fault. Her fault for saying something in the first place, she says; my fault for not just walking away and letting it drop, I think. But that's just some textbook Over Developed Sense of Responsibility right there. Over time, everything feels like our fault - when people are happy, when they're not, how they act because of their mood - all of that is not in our control, but it feels like it should be.
Example: Last night's big blow out (which follows our last really big blow out by only 6 months, with about 3 less major ones in between) came immediately following his vacation, last week. That's 9 days of holding your breath, tiptoeing around, hiding yourself in your room (or at work, or in the cellar, or at someone else's house: Hell I even stayed later at the HOSPITAL so I wouldn't have to come home) so that you don't accidentally say something to set him off. He, of course, doesn't see it like that, but the rest of us do. If I'm going to keep a fight from happening I either have to a)pretend that I'm fine with the drinking and drunk him and all that comes along with that (overly affectionate fakeness, pushing food on you repeatedly, an inability to take no for an answer about anything) or b) not be in the same room with him. I chose, for as much as I was able, option b. For nine days. My sister and her husband ate with him more, choosing lite option A and a huge dose of option B (cellar time ALL NIGHT LONG). And my mom, well she usually can't get away with B, and even though she doesn't do a good job of pretending (i.e: we can all tell she's pissed off at him), he doesn't really notice, so that's the way our week went.
It was only after all that shit that my sister came home from work yesterday and called him on his drinking (A bit of an explanation first: following last ginormous traumatizing fight, he swore off drinking. That lasted a week. Since then he has told us that he won't drink at all. Then he changed it to "I won't drink when I'm cooking" Then it was "I won't have more than 1 glass/2 glasses/3 glasses a night" Last night he was at 2.5 glasses when she walked in). And then spent the rest of the night crying, saying she shouldn't have started anything.
She didn't start it, and I want her to get that. (Hi. I know you get it, but you don't feel it. That's ok, too, but just so you know: I know this wasn't your fault.) He can lay the blame at our feet - hers for daring to say something, mine for not shutting my mouth when he wanted me to, my mom's for not sticking up for him "while I was being assaulted" - but we all know the truth about where it goes. This is his fault, and that's all there is too it.
Another sister and I were talking recently, about babies. About how much we want them and don't have them, and are scared it may never happen for us. (Which, let's not talk about that right now) And she said something about never letting her kids sleep over, out of fear of what his moods would be like, and it sort of killed me (because I love my niece and nephews so much and would hate not to be able to spend time with any of them), and at the same time I understood perfectly. I want a baby more than anything, but I would never bring it into this house the way it is right now. Never.
So don't give me all this shit about how you just can just "cook, and drink, and mind my own fucking business", because it is my business. Because I love you, and because I love them, and because, god damn it I'm trying really fucking hard to love myself. And I can't love a person who lets other people walk all over them - or her family. So, I know you're going to do as you please (who knows it better than me**), but it's not going to be crushing me anymore. It's not going to be hurling abuse at the people I love anymore. And if that means that I've lost two fathers to alcohol, I'm going to say that that really sucks. And I'm going to be horribly sad. But I'm not going to lose myself just so you can be a happy drunk.
*And I'd just like to say that my Mom, whose own issues with alcohol have been pretty intense and troubling, has been sober for almost four months now, and I couldn't be prouder of her. Yes, it was a decision she made based on medical necessity, but I think every addict's decision to get sober is medically necessary, and she's working really hard on it, which is amazing.
**My biological father slipped into his alcoholism sometime before I 9, and our relationship was rocky from that point on. Eventually, 11 years ago this July, it took his life.
Friday, February 03, 2012
Dear Media Relations Person, Susan G. Komen Foundation -
I'm sure you're getting a metric ton of these e-mails and letters, and wading through them is both frustrating and overwhelming. I know the feeling - I have probably the same amount of medical bills and test results and doctor's notes to wade through myself. Because I live with illness, I live with paperwork. And because it's your job, so do you. I doubt you were expecting all of this, however - all these critical, disappointed, stinging responses to your new policy of cutting funding for Planned Parenthood
Here's the thing - I am sure that you started at this job because you wanted to help people with cancer: can't think of any other earthly reason why else you'd be working for a Foundation (usually) known for it's dedication to eradicating, educating about, and researching into the causes of breast cancer. I just did a little research into the Foundation, which I'd heard of, of course, but knew very little about - I'm sorry to hear of Ms. Komen's personal battle with breast cancer, and touched by the fact that her loss led to the the salvation of many other women: it's a great tribute to her, and for her sister to have created the Foundation in her name is truly inspiring.
I am sure, given those circumstances, and all that you all have done in the past 30 years to further the cause, that all of this negative attention is probably pretty disheartening, and I'm sorry for that.
But what's not inspiring is bigotry, ignorance or discrimination. And what's also disheartening is your organization's new policy, which is both antithetical to your stated goals of "to eradicate breast cancer by advancing research, screening, care and education," but also short sighted and, frankly, appalling.
I personally, (and every woman I have spoken to on the subject, as well as those who are leaving messages on your Facebook page and sending e-mails and writing blog posts) fail to see how defunding cancer screenings - and let's be clear, that is ALL you are defunding, cancer screenings and treatments (17% of Planned Parenthood's services) - for (mostly) lower-income women will help you to attain your "vision of a world without breast cancer." That's not logical, it's not honest, and it sullies the good work you have done (or will continue to do).
Politics, although very few seem to recognize this, has no place in medicine. There is nothing 'pro-life' about cutting off the ONLY route many women/men will have to prevent, treat, or cure their breast cancer. It is hypocritical of your Foundation to hide behind 'policy changes' and obscure new rules about 'organizations under investigation', when your own executives are the ones who are leading the charge for those investigations, and whose only motivation is their own political agenda.
An organization such as yours, which claims to be "For the Cure", which has done so much in pursuit of that cure should not be discriminating against women who need your help. For any reason. You should be above the political maneuverings on a divisive issue, when it has absolutely nothing to do with what you are fighting for.
I'm not saying your executives should support Planned Parenthood if they are against some of the things that go on there, but your Foundation? Whose only mission is to 'eradicate' this illness? Should continue to support the people on the front lines - the women and men who need screening and treatment and care, the doctors and nurses who provide that care, the technicians and specialists who evaluate the needs of the patients - no matter where they are practicing. This new policy, is egregious and should be corrected IMMEDIATELY.
I mentioned my own illness in the beginning of this letter, and while it isn't breast cancer, without the help of local clinics, many funded through private foundations and organizations like your own, my life would be very different right now. I would not - do not - have the resources to battle it on my own, and would have no way or receiving them without help. I cannot condone or understand an organization that is supposed to be dedicated to such a noble goal - eliminating breast cancer, The End. - making such an ill-conceived and deadly decision. Because make no mistake, for women like me, who depend on places like Planned Parenthood for their care, taking away those sort of places, is taking away our only chances of survival.
I don't send my money or donate my time to organizations that think it's ok to discriminate against whole segments of the population, or who put politics before their own goals and the needs of the people they're supposed to be meeting. That is what you are doing with this new decision. I hope that you will reconsider your policy shift, and make this right. Until that change is made, please know that you will not be getting my support, nor, I suspect, the support of many others.
Sincerely,
Friday, January 20, 2012
In the ball pit
I do this thing where I start thinking - really thinking - about something that's important: Have you noticed this about yourself? Is there a reason why you have to run your mouth like that/act so awkward around new people/ be unbelievably cranky for no good reason? And as soon as the truth about the thing starts rushing at me - as soon as I'm starting to get to the meat of the issue, or when it starts to sort of click in my head that this is not a unique occurrence, that I sometimes act like this and maybe it is a pattern... well, when the truth starts rushing at me, I start rushing away. Is there anybody who needs tending or talking to, or playing with? Isn't there a show on right now that I can escape into, be mindless with? Isn't there a book I could read that would take me anywhere but here, facing the truth? It's such an uncomfortable feeling, this realizing things about yourself, and I would do just about anything to avoid it, I think.
When it does come, and I have seen the whole, frustrating, ill fitting truth about myself, it sticks in my brain: a large scaly burr just big enough and irritating enough to block out anything else. I have no other qualities except this uncomfortable truth - I am no longer a good person, a caring sister, a hard worker - I am only an inveterate gossip, a gigantic fraud, a loathsome individual who feels lonely until she's with people and then wants nothing more than to be left alone. Even though I know that this is not true - that all the good things I am or do are not obliterated by some newfound/newly understood flaw in my character - it is how it feels, and sometimes how it feels is how it is.
I have recently come to quite a few uncomfortable realizations about myself, and trying to integrate those things - a certain pettiness here, a confounding inability stick to the straight facts there - into my vision of who I am is proving more difficult than I'd have guessed. I have always known that I wasn't perfect ~ contrary to what others may think, I am well aware that my goody-two shoes image is just something other people see me as - I have never seen myself as such, and wouldn't really care to. But these inconsistencies in my character - the difference between who I want myself to be and who I really am, these are things I want to fix, to change. And that means recognizing them first, figuring out how deep they run and (maybe) where they come from, and how to stop doing them. It's a lot of heavy mental lifting, and, for a person who has limited reserves of any kind of energy - physical, mental, emotional - it certainly seems Sisyphean.
So I keep looking for low energy escapes - can I ever get my Google Reader below a thousand again? Is Reddit being entertaining or insulting today? Is there any way I can get my uncle to have a conversation with people so that they don't think he's an ogre? Let me organize every photo you've ever taken in your whole life! - and then condemning myself for needing these escape routes. It feels like I'm stumbling around kicking at little pebbles, all the while trying to avoid all the heavy boulders I know I have to move if I want to move forward, but just can't even look at yet.
It feels that way about everything - about all the work I have to do to manage my illnesses (and the question of when I decided that just 'managing' is enough for me), about all the things in my own behavior that I'd like to change; about all the topics in my family that need addressing, and all the ways we find of not addressing them; about not making time for friends and then wondering why they aren't making time for me; about the world as a whole and all the things spinning out of control in it. It just feels like there's too many important things that should get looked at, poked at, lifted up and examined, fixed, and I don't want to touch a single one of them.
A perfect example in the physical world is that my space is still not undecorated from Christmas - oh, the actual decorations are down, but the furniture is still all in the wrong places for every day living. Thus making it more difficult to do things like get towels, because we moved the cart that holds the towels behind the chair, so you have to climb over the chair to get ready to take a shower. It's little ridiculous things like that, but also huge life changing things like deciding to call the PT again, and see where that takes me, or actually changing my diet enough to prevent this diabetes thing from happening - and I just don't want to face any of it at all.
And here I write the necessary caveats that "we've all been sick since Christmas! - and I mean sick sick, like the flu that won't die sick" and "I've just spent two months caring for a wonderful lady, whose head is harder than the stairs she fell down!" and "blah blah blah Chronic Illness, you idiot!" but all of that - while true and real and just so much - doesn't feel like enough of a reason to let everything else pass me by. I never feel like I am juggling half of the balls I need to juggle, there's just me, standing with maybe the three or four largest, most fragile balls, throwing them up and catching them (sometimes by the skin of my teeth, but still, catching them), and all the while, the floor around me is littered with a million other smaller balls.... It's basically me, standing up to my waist in the ball pit of Chuck E Cheese, trying to catch all these biggest balls, but knowing I've let a thousand more go. And not knowing which of those thousand was the next most important - the one that needed me now, and I won't get to it for another three weeks.
I don't know what to do about all that - how to climb out of the ball pit, or juggle better, or even begin identifying the colors of all the stupid things I'm standing in. I know this feeling will pass, or fade, because it has in the past, but it never goes away... I'm always fumbling something, and I wish I knew how to stop.
When it does come, and I have seen the whole, frustrating, ill fitting truth about myself, it sticks in my brain: a large scaly burr just big enough and irritating enough to block out anything else. I have no other qualities except this uncomfortable truth - I am no longer a good person, a caring sister, a hard worker - I am only an inveterate gossip, a gigantic fraud, a loathsome individual who feels lonely until she's with people and then wants nothing more than to be left alone. Even though I know that this is not true - that all the good things I am or do are not obliterated by some newfound/newly understood flaw in my character - it is how it feels, and sometimes how it feels is how it is.
I have recently come to quite a few uncomfortable realizations about myself, and trying to integrate those things - a certain pettiness here, a confounding inability stick to the straight facts there - into my vision of who I am is proving more difficult than I'd have guessed. I have always known that I wasn't perfect ~ contrary to what others may think, I am well aware that my goody-two shoes image is just something other people see me as - I have never seen myself as such, and wouldn't really care to. But these inconsistencies in my character - the difference between who I want myself to be and who I really am, these are things I want to fix, to change. And that means recognizing them first, figuring out how deep they run and (maybe) where they come from, and how to stop doing them. It's a lot of heavy mental lifting, and, for a person who has limited reserves of any kind of energy - physical, mental, emotional - it certainly seems Sisyphean.
So I keep looking for low energy escapes - can I ever get my Google Reader below a thousand again? Is Reddit being entertaining or insulting today? Is there any way I can get my uncle to have a conversation with people so that they don't think he's an ogre? Let me organize every photo you've ever taken in your whole life! - and then condemning myself for needing these escape routes. It feels like I'm stumbling around kicking at little pebbles, all the while trying to avoid all the heavy boulders I know I have to move if I want to move forward, but just can't even look at yet.
It feels that way about everything - about all the work I have to do to manage my illnesses (and the question of when I decided that just 'managing' is enough for me), about all the things in my own behavior that I'd like to change; about all the topics in my family that need addressing, and all the ways we find of not addressing them; about not making time for friends and then wondering why they aren't making time for me; about the world as a whole and all the things spinning out of control in it. It just feels like there's too many important things that should get looked at, poked at, lifted up and examined, fixed, and I don't want to touch a single one of them.
A perfect example in the physical world is that my space is still not undecorated from Christmas - oh, the actual decorations are down, but the furniture is still all in the wrong places for every day living. Thus making it more difficult to do things like get towels, because we moved the cart that holds the towels behind the chair, so you have to climb over the chair to get ready to take a shower. It's little ridiculous things like that, but also huge life changing things like deciding to call the PT again, and see where that takes me, or actually changing my diet enough to prevent this diabetes thing from happening - and I just don't want to face any of it at all.
And here I write the necessary caveats that "we've all been sick since Christmas! - and I mean sick sick, like the flu that won't die sick" and "I've just spent two months caring for a wonderful lady, whose head is harder than the stairs she fell down!" and "blah blah blah Chronic Illness, you idiot!" but all of that - while true and real and just so much - doesn't feel like enough of a reason to let everything else pass me by. I never feel like I am juggling half of the balls I need to juggle, there's just me, standing with maybe the three or four largest, most fragile balls, throwing them up and catching them (sometimes by the skin of my teeth, but still, catching them), and all the while, the floor around me is littered with a million other smaller balls.... It's basically me, standing up to my waist in the ball pit of Chuck E Cheese, trying to catch all these biggest balls, but knowing I've let a thousand more go. And not knowing which of those thousand was the next most important - the one that needed me now, and I won't get to it for another three weeks.
I don't know what to do about all that - how to climb out of the ball pit, or juggle better, or even begin identifying the colors of all the stupid things I'm standing in. I know this feeling will pass, or fade, because it has in the past, but it never goes away... I'm always fumbling something, and I wish I knew how to stop.
Friday, April 15, 2011
(PS - Spell check? If Unreedemed is a word, why isn't unredeeming?)
I spent the week feeling like I was in the middle of an ocean, floating and bobbing along, attempting to eat crackers and drink ginger ale without having them revisit me. That's what I get for trying new drugs. And now that that is starting to truly pass (hey: I ate real, non-cracker foods today... this is a plus! Except do you know what happens to your stomach when you try to put non-cracker foods in it after a week of crackers? It does not take kindly to the intrusion, I can tell you that!), I get to have huge emotional upheavals instead! Hooray!
Seriously. Sometimes I think moving to Australia* might be the wisest choice. I'm starting to think of aliases, see which ones fit me best. I don't want to talk about it again, right now, but suffice it to say that I have both cried and cursed more in the last 8 hours then I have in the last three years. Easily. If you are guessing that the drama is somehow sister related, you would be correct. You would also be correct if you guessed that there was no actual resolution (peaceable or otherwise) /conclusion achieved in the final analysis of the day. In fact, while I think some very important things were said, I'm not sure if any of the important things that needed to be accomplished were accomplished. But I tried. God almighty, I don't think I could have tried any harder, and that's all anybody can ask of me.
By "anybody", I of course mean 'anybody but me ', since I apparently am not satisfied with having done my best, but instead am upset that I wasn't able to achieve miracles and (our little) world peace while I was at it, but that's just because I am kind of a jerk to myself.
I am going to go and find something completely unredeeming to watch on television, or some cracktastic type of book to read, or a computer game that will devour my soul for a few hours. (Or perhaps all three of those things at the exact same time.) Anything to not be me for a little bit.
I'll check back in with you all soon, and hope your weekend is full of bright spots that don't include crackers or drama (unless crackers &/or drama are your idea of happiness, in which case, have at it!)
*Bonus points for all children's lit majors who managed to find the Terrible, Horrible, No Good, Very Bad portion of today's post.
Seriously. Sometimes I think moving to Australia* might be the wisest choice. I'm starting to think of aliases, see which ones fit me best. I don't want to talk about it again, right now, but suffice it to say that I have both cried and cursed more in the last 8 hours then I have in the last three years. Easily. If you are guessing that the drama is somehow sister related, you would be correct. You would also be correct if you guessed that there was no actual resolution (peaceable or otherwise) /conclusion achieved in the final analysis of the day. In fact, while I think some very important things were said, I'm not sure if any of the important things that needed to be accomplished were accomplished. But I tried. God almighty, I don't think I could have tried any harder, and that's all anybody can ask of me.
By "anybody", I of course mean 'anybody but me ', since I apparently am not satisfied with having done my best, but instead am upset that I wasn't able to achieve miracles and (our little) world peace while I was at it, but that's just because I am kind of a jerk to myself.
I am going to go and find something completely unredeeming to watch on television, or some cracktastic type of book to read, or a computer game that will devour my soul for a few hours. (Or perhaps all three of those things at the exact same time.) Anything to not be me for a little bit.
I'll check back in with you all soon, and hope your weekend is full of bright spots that don't include crackers or drama (unless crackers &/or drama are your idea of happiness, in which case, have at it!)
*Bonus points for all children's lit majors who managed to find the Terrible, Horrible, No Good, Very Bad portion of today's post.
Friday, April 08, 2011
Postage Stamp Island...
As much as my brother-in-law might laugh at me for attempting to rap (or, more accurately 'sing a rap song',) my current life resembles nothing so much as the line from Grandmaster Flash's The Message "Don't push me, cuz I'm Close. To. The. Edge. (I'm trying not to lose my head)"
My pain has been turning it up to eleven lately, following a couple of infection setbacks and my dumb insistence that I do not need as much down time as my body thinks it requires (because "downtime is boring!" ... So is suffering, you ass). Because of that, I am living with the near constant feeling that my muscles and bones are attempting to burst through my skin, as if I've taken some excess Skele-gro* without the accompanying broken bones. You know how on the Hulk (original TV show Hulk), his eyes would glow green, and then his clothes would start falling to pieces as he just expanded into this terrifying green monster? Yeah, it basically feels like that, complete with bonus "Hulk Smash!!!!#!@!" anger because who the hell wants to feel like that? It hurts to breathe, or move, or put clothes on - I literally cried the other day, when we had to leave the house and I had to put on a bra. (And yes, I know it is beyond stupid to put whether or not you look good over whether or not a piece of clothing makes you hurt so much you cry, but I can't get over it: Leaving the house without my bra makes me feel naked and not in a good way.) Sleep is a joke, because rolling over in bed is as dangerous as rolling through a field of landmines, and the other day I just got up and baked cookies at 2 in the morning because if I laid there for one more minute, I was going to flip out.
This is usually the point where my readers who don't have chronic illnesses say something like "Why don't you call your doctor and tell him/her that you're hurting so much?" And I appreciate the thought, I really do, but here's the thing: My doctor's know. They know, and it's not that they don't care, because they do - it's that they don't have the answer for me. They just don't know it. They keep trying - I am, in fact on my third new medication trial in as many months - but if you don't know the answer, you just don't. So calling them and telling them that I feel like the Hulk, it doesn't get either of us very far. "Give the meds more time to work" they say. Or "Did you take the narcotics I gave you - you don't have to be a hero" Right: because wanting to be present, even vaguely in my own life, is heroic. No - I am medicated to the gills, as much as I can be without just being completely out of it (and I can't guarantee that either, sometimes), but (so far), we just don't know the answer.
So there's that. But it's not just that: I feel near the edge on just about everything.
While I won't be homeless if the government decides to go offline this weekend (as I know some will), if it continues for any length of time I will be medication-less, which, for me is quite a serious condition. (I depend on my government to allow me to breathe: what do you depend on it for?) There's no way I could afford the $400 required for a 30 day supply of one of my medications, let alone the over a thousand dollars that would be their sum total - and that's just for the basics, not the 'optional' things like the stuff I use to treat my allergies or the cream I use when the allergy stuff doesn't work. Financial worries would start building if the government was shut down for any length of time, but that's biting off more worries than I need, at this point. But we're there - at the edge.
I'm at the edge with my family, with sisters who are so hurt and angry and frustrated/ing that I just feel like everything I do is wrong. With my mom who's obviously hanging on to her own edge, but won't admit it. With my dad who's having problems at work and thinks it's funny to come home early and say things like "I got fired." (Hint: it is not funny.) With pregnant cousins and non pregnant me, with sisters moving to freaking Iowa or getting married (with no plans, yet!) in the fall, and brothers who don't see the glory of their own children. With a grandmother who asks you for help picking out her funeral clothes when you go over to visit her, in the same breath that she tells you how well she is doing. ("It's not morbid: it's practical. I'm going to be 94." Well, let's be the opposite of practical, then, shall we?) With best friends who don't call or write, and with myself for not calling or writing.
I'm just so close to the edge that it feels like everywhere I turn, there's another edge. Like I woke up on an island, all of the sudden, instead of a continent. Like there's no place safe.
And yet, between me and those edges are little girls with curly hair who say things like "My tooth is loose, even though you can't feel it move," because the girl down the street got money from the "Tooth Bunny". There's 11-yr-olds who direct their own 60 second movie clips on low res digital cameras, that include such action packed sequences as "Fort elephante & how it crumbled!" There's three derpy fluffy bunnies made out of pom-poms and googly eyes, named KC, Sunshine & Band. There's meringue cookies at two o'clock in the morning, and the fact that I can make them sans recipe. There's the fact that the nurse at Zack's office, the much loved Maryellen, worked for five days to get the approval I needed for this latest medication, even though the MassHealth people were being assholes about it. There's Facebook statuses from people far away that I miss very much. There's the fact that my window is open right now, even though it's freaking April. There's all these words typed into little boxes all over the country that show up on my screen, right here on my bed. There's a lot of stuff that pushes me back, and I try to remember it.
The edges are still there though, and my island's getting smaller.
Print Available Here
*Shout outs** to Harry Potter, the Hulk, KC & The Sunshine Band and Grandmaster Flash in the same blog post? Yeah, I'm complicated.
** Using the term 'shout-out'? No, you're really not.
My pain has been turning it up to eleven lately, following a couple of infection setbacks and my dumb insistence that I do not need as much down time as my body thinks it requires (because "downtime is boring!" ... So is suffering, you ass). Because of that, I am living with the near constant feeling that my muscles and bones are attempting to burst through my skin, as if I've taken some excess Skele-gro* without the accompanying broken bones. You know how on the Hulk (original TV show Hulk), his eyes would glow green, and then his clothes would start falling to pieces as he just expanded into this terrifying green monster? Yeah, it basically feels like that, complete with bonus "Hulk Smash!!!!#!@!" anger because who the hell wants to feel like that? It hurts to breathe, or move, or put clothes on - I literally cried the other day, when we had to leave the house and I had to put on a bra. (And yes, I know it is beyond stupid to put whether or not you look good over whether or not a piece of clothing makes you hurt so much you cry, but I can't get over it: Leaving the house without my bra makes me feel naked and not in a good way.) Sleep is a joke, because rolling over in bed is as dangerous as rolling through a field of landmines, and the other day I just got up and baked cookies at 2 in the morning because if I laid there for one more minute, I was going to flip out.
This is usually the point where my readers who don't have chronic illnesses say something like "Why don't you call your doctor and tell him/her that you're hurting so much?" And I appreciate the thought, I really do, but here's the thing: My doctor's know. They know, and it's not that they don't care, because they do - it's that they don't have the answer for me. They just don't know it. They keep trying - I am, in fact on my third new medication trial in as many months - but if you don't know the answer, you just don't. So calling them and telling them that I feel like the Hulk, it doesn't get either of us very far. "Give the meds more time to work" they say. Or "Did you take the narcotics I gave you - you don't have to be a hero" Right: because wanting to be present, even vaguely in my own life, is heroic. No - I am medicated to the gills, as much as I can be without just being completely out of it (and I can't guarantee that either, sometimes), but (so far), we just don't know the answer.
So there's that. But it's not just that: I feel near the edge on just about everything.
While I won't be homeless if the government decides to go offline this weekend (as I know some will), if it continues for any length of time I will be medication-less, which, for me is quite a serious condition. (I depend on my government to allow me to breathe: what do you depend on it for?) There's no way I could afford the $400 required for a 30 day supply of one of my medications, let alone the over a thousand dollars that would be their sum total - and that's just for the basics, not the 'optional' things like the stuff I use to treat my allergies or the cream I use when the allergy stuff doesn't work. Financial worries would start building if the government was shut down for any length of time, but that's biting off more worries than I need, at this point. But we're there - at the edge.
I'm at the edge with my family, with sisters who are so hurt and angry and frustrated/ing that I just feel like everything I do is wrong. With my mom who's obviously hanging on to her own edge, but won't admit it. With my dad who's having problems at work and thinks it's funny to come home early and say things like "I got fired." (Hint: it is not funny.) With pregnant cousins and non pregnant me, with sisters moving to freaking Iowa or getting married (with no plans, yet!) in the fall, and brothers who don't see the glory of their own children. With a grandmother who asks you for help picking out her funeral clothes when you go over to visit her, in the same breath that she tells you how well she is doing. ("It's not morbid: it's practical. I'm going to be 94." Well, let's be the opposite of practical, then, shall we?) With best friends who don't call or write, and with myself for not calling or writing.
I'm just so close to the edge that it feels like everywhere I turn, there's another edge. Like I woke up on an island, all of the sudden, instead of a continent. Like there's no place safe.
And yet, between me and those edges are little girls with curly hair who say things like "My tooth is loose, even though you can't feel it move," because the girl down the street got money from the "Tooth Bunny". There's 11-yr-olds who direct their own 60 second movie clips on low res digital cameras, that include such action packed sequences as "Fort elephante & how it crumbled!" There's three derpy fluffy bunnies made out of pom-poms and googly eyes, named KC, Sunshine & Band. There's meringue cookies at two o'clock in the morning, and the fact that I can make them sans recipe. There's the fact that the nurse at Zack's office, the much loved Maryellen, worked for five days to get the approval I needed for this latest medication, even though the MassHealth people were being assholes about it. There's Facebook statuses from people far away that I miss very much. There's the fact that my window is open right now, even though it's freaking April. There's all these words typed into little boxes all over the country that show up on my screen, right here on my bed. There's a lot of stuff that pushes me back, and I try to remember it.
The edges are still there though, and my island's getting smaller.
Print Available Here *Shout outs** to Harry Potter, the Hulk, KC & The Sunshine Band and Grandmaster Flash in the same blog post? Yeah, I'm complicated.
** Using the term 'shout-out'? No, you're really not.
Sunday, November 14, 2010
"...the family disease of alcoholism... made us 'co-victims', those who take on the characteristics of the disease without ever taking a drink"*
Day 14: A letter to a hero who has let you down
I wasn't going to write this letter, but ... I didn't feel that I could skip it, since I'm trying to hold myself accountable for things. And then I thought, well, write about Obama, and how he's disappointed you as president (true), but there was no getting around the fact that if I wrote that letter (which I have composed many times in my head), it would just be a cop out: Obama is a great person, and while I want him to be an extraordinary leader, I've never considered him a hero of mine.
Instead, I decided to go exactly where I didn't want to go, and be glad to get it said here, where (almost) nobody who knows the people involved would read it. There are things I should have said that need saying, people in my life who I wish could've remained untarnished heroes to me.
The fact that growing older means seeing another side to things doesn't always mean you forget how it felt when you were younger. I don't even think it should. It's important that I remember that I once was a little girl who loved her daddy, and whose daddy hurt her very badly. A young woman who trusted that her big brother was smart enough to not stomp on her heart, and who was (unfortunately) proven wrong. A daughter who cared enough about her parents to tell them that they were ruining their relationships with everyone around them, even if those warnings were met with harshness and hurt. A friend who tried to point her friends in the right direction, but wound up watching as they stumbled the other way instead.
However, I'm going to preemptively apologize to you, the actual readers of this letter: It started off as one thing and sort of snowballed into something else. Instead of the one person I had intended to write the letter to, I wound up with a whole lot of heroes who had let me down, and they sort of made themselves known as I was going along. So the tense changes, and apparent contradictions, and utter... incomprehensibility of some portions of this letter are my own fault, but I chose to leave them in, because they meant something to me. I'm sorry if that makes it more difficult for all of you.
Dear ___________,
Let me start with this - perhaps, I understand better now, as an adult, the urge to slip into oblivion. The urge to just be numb, and not feel the pain that is life. I can understand that, and at the same time condemn you for doing it.
I can see now that there are things you may have done or that happened to you in your life that you would rather forget, however momentarily. I can even, with hindsight, see that it was those things, and not me, or my lack of something, that made you turn to the substance of your choice, no matter how it felt at the time.
But I can't ever forget that you made that choice, those choices. That you are continuing to make that choice, regardless of what I say or how I feel. That your choice took you away from me, or that it is putting space between us. An unending space, a gulf that I can't imagine ever being able to bridge or span or ford. And that I can't make you see that your choices are harmful to you and to those around you.
When I was a kid, you were ... everything. Two everythings. Three everythings. Four everythngs. All the people a little girl looks up to, the people who are supposed to do their best to look out for her, that she's supposed to be able to count on. And that four of my everythings would make the same choices, would, one by one, abandon me in a way that was heart-freezingly painful, would pick a substance over me (no matter that that isn't what you think/thought you were doing: it is what happened from my point of view) has been soul crushing.
I don't think I've made that clear enough in person, when I've had the chance, so here, let me repeat it (Yes, in the safety of this space that you will never read it, but at least it will be said): You crushed me.
You each did it individually, and that can not be overlooked, but the group of you together? Each making your own individual choices to turn away from our family and towards something ... else. Well, what that does to a girl, to a young woman, to a woman, you'll just never know.
Did you know it would end us? Did you know that it would ruin everything we had? If you had known, could you have chosen differently? How is it possible that, given all the examples, given the example of each other, you didn't know how badly it would hurt - not just me, but you, and all of us?
If a hero is someone you can look up to, there are still a lot of ways in which you all are heroic to me - your service, your support, your love, your example, your hearts, your willing hands, your quick minds - but it is that one way in which you have let me down that I have talked about today. I could sing your praises in a million different ways, but for today, just for this letter, I wanted you to know just how badly you let me down.
But I still love/d you, tarnish and all.
Love, NTE
*Adult Children of Alcoholics, World Service Organization, Inc.
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Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself
I wasn't going to write this letter, but ... I didn't feel that I could skip it, since I'm trying to hold myself accountable for things. And then I thought, well, write about Obama, and how he's disappointed you as president (true), but there was no getting around the fact that if I wrote that letter (which I have composed many times in my head), it would just be a cop out: Obama is a great person, and while I want him to be an extraordinary leader, I've never considered him a hero of mine.
Instead, I decided to go exactly where I didn't want to go, and be glad to get it said here, where (almost) nobody who knows the people involved would read it. There are things I should have said that need saying, people in my life who I wish could've remained untarnished heroes to me.
The fact that growing older means seeing another side to things doesn't always mean you forget how it felt when you were younger. I don't even think it should. It's important that I remember that I once was a little girl who loved her daddy, and whose daddy hurt her very badly. A young woman who trusted that her big brother was smart enough to not stomp on her heart, and who was (unfortunately) proven wrong. A daughter who cared enough about her parents to tell them that they were ruining their relationships with everyone around them, even if those warnings were met with harshness and hurt. A friend who tried to point her friends in the right direction, but wound up watching as they stumbled the other way instead.
However, I'm going to preemptively apologize to you, the actual readers of this letter: It started off as one thing and sort of snowballed into something else. Instead of the one person I had intended to write the letter to, I wound up with a whole lot of heroes who had let me down, and they sort of made themselves known as I was going along. So the tense changes, and apparent contradictions, and utter... incomprehensibility of some portions of this letter are my own fault, but I chose to leave them in, because they meant something to me. I'm sorry if that makes it more difficult for all of you.
Dear ___________,
Let me start with this - perhaps, I understand better now, as an adult, the urge to slip into oblivion. The urge to just be numb, and not feel the pain that is life. I can understand that, and at the same time condemn you for doing it.
I can see now that there are things you may have done or that happened to you in your life that you would rather forget, however momentarily. I can even, with hindsight, see that it was those things, and not me, or my lack of something, that made you turn to the substance of your choice, no matter how it felt at the time.
But I can't ever forget that you made that choice, those choices. That you are continuing to make that choice, regardless of what I say or how I feel. That your choice took you away from me, or that it is putting space between us. An unending space, a gulf that I can't imagine ever being able to bridge or span or ford. And that I can't make you see that your choices are harmful to you and to those around you.
When I was a kid, you were ... everything. Two everythings. Three everythings. Four everythngs. All the people a little girl looks up to, the people who are supposed to do their best to look out for her, that she's supposed to be able to count on. And that four of my everythings would make the same choices, would, one by one, abandon me in a way that was heart-freezingly painful, would pick a substance over me (no matter that that isn't what you think/thought you were doing: it is what happened from my point of view) has been soul crushing.
I don't think I've made that clear enough in person, when I've had the chance, so here, let me repeat it (Yes, in the safety of this space that you will never read it, but at least it will be said): You crushed me.
You each did it individually, and that can not be overlooked, but the group of you together? Each making your own individual choices to turn away from our family and towards something ... else. Well, what that does to a girl, to a young woman, to a woman, you'll just never know.
Did you know it would end us? Did you know that it would ruin everything we had? If you had known, could you have chosen differently? How is it possible that, given all the examples, given the example of each other, you didn't know how badly it would hurt - not just me, but you, and all of us?
If a hero is someone you can look up to, there are still a lot of ways in which you all are heroic to me - your service, your support, your love, your example, your hearts, your willing hands, your quick minds - but it is that one way in which you have let me down that I have talked about today. I could sing your praises in a million different ways, but for today, just for this letter, I wanted you to know just how badly you let me down.
But I still love/d you, tarnish and all.
Love, NTE
*Adult Children of Alcoholics, World Service Organization, Inc.
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Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself
Monday, November 08, 2010
Ching-wah TSAO duh liou mahng
Day 08: Name someone who has made your life hell, or treated you like shit
You can click any of these links if you're interested in reading about the people who have done me the most wrong - my own personal demons, the PeopleUpStairs (AKA PUS). I don't recommend it because it's depressing, frustrating, and rage-inducing. (That last one really sums it up, IMO.)
TL;DR: These people are awful and horrendous, and hurray! Not In My Life ANYMORE!
Instead of dwelling in my past misery, please to enjoy these fabulous andcompletely not at all related links:
That wordy and wonderful ode to the people who have done me wrong is brought to you by BlueSwami's hate letter generator. You can click and create your own, if you'd like.
Also of interest, (if you happen to be a geek) are these inventive Chinese curses and their pronunciations, should you choose to learn them. If you'll excuse me, I have to go practice saying the title to this post, just to have it in my back pocket.
PS: If you've never seen Firefly, and it's follow-up movie Serenity, I tell you that you MUST.
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Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself
You can click any of these links if you're interested in reading about the people who have done me the most wrong - my own personal demons, the PeopleUpStairs (AKA PUS). I don't recommend it because it's depressing, frustrating, and rage-inducing. (That last one really sums it up, IMO.)
TL;DR: These people are awful and horrendous, and hurray! Not In My Life ANYMORE!
Instead of dwelling in my past misery, please to enjoy these fabulous and
You jaundiced jumped up, vercordiously pusillanimous piffle. Upon reading this, you are probably muttering something like "Ho ho, sour grapes." You have a point. But my rejoinder, vinegar face, is what hope did those grapes ever have while you live and breathe?
How can you be so blindly unaware of the loathing and revulsion you engender wherever you go? I have had fantasies about attacking you with a machete, but I dare not.
Have you any idea how truly offensive you are, have you any idea at all? Do you know what an idea is? Sorry. Unfair question. You have singlehandedly, completely, enthusiastically, maniacally, with gusto and lip smacking delight, stovered any advancements made in the human condition over the last six million years. Congratulations. You must be so proud. If you once had any redeeming quality, it has been strangled and garrotted by your other brutish traits.
Why is it everytime I think of you I think of pus? Sea slugs are scum sucking invertebrae. Land slugs are slimy mollusc-brained cabbage eaters. But you are just PUS.
If everything in this world has some purpose, some grand plan behind its existence, then yours surely is to show everything else, whether it be a slops bucket in a fried chicken stand, or the gunk behind the fridge, how fortunate it is not to be you. This letter has come to end. But it is to my eternal disappointment, my bitter regret, that you have not.
That wordy and wonderful ode to the people who have done me wrong is brought to you by BlueSwami's hate letter generator. You can click and create your own, if you'd like.
Also of interest, (if you happen to be a geek) are these inventive Chinese curses and their pronunciations, should you choose to learn them. If you'll excuse me, I have to go practice saying the title to this post, just to have it in my back pocket.
PS: If you've never seen Firefly, and it's follow-up movie Serenity, I tell you that you MUST.
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Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself
Wednesday, November 03, 2010
"Monsters are real, ghosts are real too. They live inside us, and sometimes, they win."*
This is my third attempt at this post - Damn: this truthiness stuff is hard!
I need to forgive myself for not growing up to be the woman I'd hoped I'd be. In so many ways.
I need to forgive myself for that one time I chickened out - for all the times I chickened out, held back, let myself be silenced; because it could have made a difference.
I need to forgive myself for forgetting important things, because it would have meant something if I'd remembered.
I need to forgive myself for not being truthful when it mattered most, because I hurt myself and some good people along the way.
I need to forgive myself for postponing things I don't want to face, because it always bites me in the ass.
I need to forgive myself for not answering the phone that night, because I couldn't have known.
I need to forgive myself for the times I only live a half-life, because I want to be more, be better, than that.
Oi, I have a feeling the next twenty seven days are going to be a tad more difficult than I had thought.
*Stephen King
Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself
I need to forgive myself for not growing up to be the woman I'd hoped I'd be. In so many ways.
I need to forgive myself for that one time I chickened out - for all the times I chickened out, held back, let myself be silenced; because it could have made a difference.
I need to forgive myself for forgetting important things, because it would have meant something if I'd remembered.
I need to forgive myself for not being truthful when it mattered most, because I hurt myself and some good people along the way.
I need to forgive myself for postponing things I don't want to face, because it always bites me in the ass.
I need to forgive myself for not answering the phone that night, because I couldn't have known.
I need to forgive myself for the times I only live a half-life, because I want to be more, be better, than that.
Oi, I have a feeling the next twenty seven days are going to be a tad more difficult than I had thought.
*Stephen King
Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself
Thursday, August 26, 2010
I be back
Hey everybody: I know it's been a little while, but have no fear, I have not (as Crazed Mom has worried about) been a part of the blog-apocalypse or anything like that. Nope, it's just regular, end of summer, everybody has their vacation at one time, trying to cram experiences into the last few weeks before school starts mayhem.
I told y'all we'd be having some visitors, and boy howdy*, did we have visitors. My sister and her boys came for about a week, and Lil Girl and her brother decided to stay with us most of that week too, because their cousins were here. Which is awesome and wonderful, and I'm so happy that they (mostly) get along because there is such a wide range of ages (8 months to 14 years), and that could be bad news, but (mostly) works for them. One of my most cherished memories of my childhood summers is the week in August that my Virginia cousins would visit... I can remember crying every time they left and almost holding my breath every summer till it was time for them to come back. I'm so glad that my niece and nephews can have the same kind of connection (and, since Sister S's boys only live in New Hampshire, get to have more than one visit a year).
But that's not to say that it didn't take a lot out of me, and really made me realize that I am still - three months post-op - definitely still in a recovery phase. I just didn't have (what passes for) my normal level of stamina or strength, and, by the middle of the week, I was getting lots of concerned questions from both Sister S and Oldest Nephew. They kept asking if I was mad, which is the question I tend to get asked a lot if the pain is showing up on my face. I had to keep reassuring them that I wasn't mad (because I wasn't), just really, really sore. Since I have had 15 years of practice in covering up how badly I am feeling (particularly around the kids), it has to be pretty horrible for that much to be leaking out. I also don't necessarily think it was bad for it to be showing - Sister S, and her oldest boy, to some extent - still don't really "get" the whole chronic illness thing, mostly because they only briefly lived with me while I was ill. They don't quite understand how bad it can get, because I mostly hide it when they are here, so as not to put a damper on the visit. Which is possible on a weekend visit, or a day trip, but for a whole week? Never gonna happen. Eventually it catches up with me, and in this case, it was definitely sooner rather than later.
While they were here, we managed to get most of the whole immediate family crew together (minus Sister K who went to Montana with her boyfriend) for a little trek to a local old timey amusement park. It's a place that holds a lot of memories for most of us, as Nana (5th grade teacher extraordinaire) used to take her classes there on a field trip every year. She and the other chaperones would bring beach chairs and park under a giant willow tree, while the kids ran across the parking lot to the arcade with the warnings of "Absolutely no one goes to the beach!" and "If you don't come when I blow this whistle, we leave without you and you can explain to your parents why you didn't make the bus" ringing in their ears.
This trip we all had a great time, we took lots of pictures, and I will talk about it some more in a later picture filled post. But it was a really special day.
Added to that, I got a visit from College Roommate/ Best Friend, and her two little girls, who I haven't seen since before Christmas, because of various illnesses (on my part) and busy social calendars (on hers). We had a very nice visit, and definitely won't go so long this time in between. And then one of those fore mentioned Virginia cousins - who now lives in Maine - came down with her mom, husband and little boy and we had lunch together at Grandmother's house, with her kids and the kids my heart says are part mine running around in the yard while we - the grownups!?! - watched from the porch. It was pretty awesome, although I still really, really don't feel like a grownup.
So that's where I've been: visiting with sisters and brothers and nieces and nephews and best friends and their kids and Virginia cousins that now live in Maine, and taking field trips down memory lane. As exhausting, punishing and painful as it has been physically, it was definitely worth it. Although I am still recuperating - from both the summer and the stupid surgery - I'm glad that we got a chance to get everybody together, and that so many people I've been missing managed to make their way to me this summer.
Plus, now I have a ton of photos to edit, and some of them I actually love, so it's bonuses all around.
*I have no idea where the Southern accent came from: I apologize for the "boy howdy."
I told y'all we'd be having some visitors, and boy howdy*, did we have visitors. My sister and her boys came for about a week, and Lil Girl and her brother decided to stay with us most of that week too, because their cousins were here. Which is awesome and wonderful, and I'm so happy that they (mostly) get along because there is such a wide range of ages (8 months to 14 years), and that could be bad news, but (mostly) works for them. One of my most cherished memories of my childhood summers is the week in August that my Virginia cousins would visit... I can remember crying every time they left and almost holding my breath every summer till it was time for them to come back. I'm so glad that my niece and nephews can have the same kind of connection (and, since Sister S's boys only live in New Hampshire, get to have more than one visit a year).
But that's not to say that it didn't take a lot out of me, and really made me realize that I am still - three months post-op - definitely still in a recovery phase. I just didn't have (what passes for) my normal level of stamina or strength, and, by the middle of the week, I was getting lots of concerned questions from both Sister S and Oldest Nephew. They kept asking if I was mad, which is the question I tend to get asked a lot if the pain is showing up on my face. I had to keep reassuring them that I wasn't mad (because I wasn't), just really, really sore. Since I have had 15 years of practice in covering up how badly I am feeling (particularly around the kids), it has to be pretty horrible for that much to be leaking out. I also don't necessarily think it was bad for it to be showing - Sister S, and her oldest boy, to some extent - still don't really "get" the whole chronic illness thing, mostly because they only briefly lived with me while I was ill. They don't quite understand how bad it can get, because I mostly hide it when they are here, so as not to put a damper on the visit. Which is possible on a weekend visit, or a day trip, but for a whole week? Never gonna happen. Eventually it catches up with me, and in this case, it was definitely sooner rather than later.
While they were here, we managed to get most of the whole immediate family crew together (minus Sister K who went to Montana with her boyfriend) for a little trek to a local old timey amusement park. It's a place that holds a lot of memories for most of us, as Nana (5th grade teacher extraordinaire) used to take her classes there on a field trip every year. She and the other chaperones would bring beach chairs and park under a giant willow tree, while the kids ran across the parking lot to the arcade with the warnings of "Absolutely no one goes to the beach!" and "If you don't come when I blow this whistle, we leave without you and you can explain to your parents why you didn't make the bus" ringing in their ears.
This trip we all had a great time, we took lots of pictures, and I will talk about it some more in a later picture filled post. But it was a really special day.
Added to that, I got a visit from College Roommate/ Best Friend, and her two little girls, who I haven't seen since before Christmas, because of various illnesses (on my part) and busy social calendars (on hers). We had a very nice visit, and definitely won't go so long this time in between. And then one of those fore mentioned Virginia cousins - who now lives in Maine - came down with her mom, husband and little boy and we had lunch together at Grandmother's house, with her kids and the kids my heart says are part mine running around in the yard while we - the grownups!?! - watched from the porch. It was pretty awesome, although I still really, really don't feel like a grownup.
So that's where I've been: visiting with sisters and brothers and nieces and nephews and best friends and their kids and Virginia cousins that now live in Maine, and taking field trips down memory lane. As exhausting, punishing and painful as it has been physically, it was definitely worth it. Although I am still recuperating - from both the summer and the stupid surgery - I'm glad that we got a chance to get everybody together, and that so many people I've been missing managed to make their way to me this summer.
Plus, now I have a ton of photos to edit, and some of them I actually love, so it's bonuses all around.
*I have no idea where the Southern accent came from: I apologize for the "boy howdy."
Wednesday, May 19, 2010
Reasons to cancel the surgery
(via my screwed up, please let me cancel the surgery! brain)
- Because the Lost series finale is on Sunday, and it is like a total pop culture moment (that I will be totally out of it for). Also, it will make me cry, and my face will probably hurt too much for crying.
- Because 6:30 is just too damn early in the morning.
- Because I have been availing myself of Dr. Google, and neither of us are pleased with what we see there.
- Because my throat isn't even hurting right now, and that is ridiculously rare! (Also: Do not currently have sinus infection! This is beyond rare... and should be appreciated.)
- Because how the hell am I going to take my regular meds? (Note to self: call tomorrow and see if there is liquid Lyrica.)
- Because... I don't wanna do it?
No: The surgery is set (fingers crossed, and barring any news from the pre-op people who still haven't called me), for 7:30 on Friday morning. I'm the first one in, which means I should also be the first one out. Which is good, because waiting is not my strong suit. All those people who comment on my 'patience' have never had to sit in a hospital waiting room with me while my mind buzzes ahead at 732 miles an hour. (Actually, some of them have, but usually I am good at hiding the buzz from people who aren't really paying attention.)
Of course, I am now coming up with a zillion different reasons why I should not let them cut open my nose or tear out the little bumps in the back of my throat, but I realize those are just my little anxieties popping up, and I try to pop them right back down. It's like one of those Whack-a-mole games: Up - Bam! - back down. Back UP - Bam! - back Down. I just have to keep bopping them on the head long enough to get to the hospital on Friday morning, at which point Mum will make me do it whether I want to or not, because she had to leave the house at 5:45 in the fricking morning.
Although I realize that it's not - in all likelihood - a life altering procedure, I'm pretty nervous about the whole thing (in case my endless blathering on about it here hasn't made that pretty obvious), but only because ... well, if you've been reading any of the blathering over the last 4-5 years, then you know why. Because medical science and NTE's body are not friends. Because whatever reaction you say it is impossible to have, then that is the reaction I will have. Because I'm in a place right now that isn't horrid and unlivable, and I am loathe to poke the bear and wind up there. Because if I wasn't nervous, at this point in my life, with this body and all of my experiences, then I would have to be pretty ignorant.
I know there are lots of people - somewhere in the midst of all those Temporarily Able Bodied people we people with disabilities talk about - that there are people who actually get up in the morning and never give a second thought to whether or not their body will respond in the way it ought. Who never have to second (third, fourth, fifth) guess a doctor's recommendation, or worry that things might not work out for them. I don't remember it, exactly: That ignorant feeling of being in control of my own body and what it was capable of, but I know that I am not one of those people anymore.
Back when I was dancing, there came a point, in the year or two right before I got sick, where I was constantly twisting my ankles. I must have sprained the right one 4 times in the course of a year and a half. And I mean seriously sprained - and even a slight fracture once. But I was 13, 14, 15, and it meant nothing - a week, two weeks, and I would be back dancing again, good as new. It honestly didn't occur to me that there could be any other outcome.
I was more fearless then: If I sprained something now, I would probably never attempt that activity again... I avoid things that cause even the most minor of injuries, go out of my way to avoid even the tiniest bit of extra pain.
Because here's the thing: Being in pain changes who you are. It changes how you see the world, how you fit into the world, how you interact with the world. Everything is a risk now. Opening my eyes, rolling over, tying my shoe. It's all a big deal, it's all a potential threat. And that's a horrible way to live, so I suppress it as much as I can. I don't overthink the little things (at least I try not to). I try to offset the extra neck tension I'll get from sitting at the table for dinner with a little extra ice pack time, or pencil in a hot shower because I decided to sit on the floor with little girl today.
You figure most things out, because you have to live.
But asking for extra pain? Going into something that is going to hurt, no matter what - even knowing that it's probably essential in the long run, well that's just incredibly risky to me. Because I can't assume that it's going to be fine, and I can't pretend that the extra pain - and oh, boy, does everybody agree that there's going to be extra pain - isn't almost a dealbreaker for me. And I shouldn't have to pretend, but in real life, I do.
The number of people - related to me, who have been witness to my illness from the beginning people - who have played oppression Olympics with me ("It's not as if it's a tumor their taking out/you're having chemo/you're losing something important" or have asked me what the "big deal is - you'll get to have tons of ice cream"? Is frustratingly high.
"But what are your other choices?" they ask. "You're going to keep getting sick right? So just let them do the little snip here, little poke there --- maybe get your tummy tucked or your boobs shrunk a little while you're under, ha ha --- and then it'll be fine" they say. (And no: I'm not talking about you, who was actually thinking about how combining surgeries would be helpful re: not having to do anesthesia twice. I'm talking about the more thoughtless among us).
Right, because A) This is totally a joke to me. and B)You're not the one who has to live in my body, in my level of pain, now or then. So you can't really tell me whether or not it's a big deal. You just have to take my word for it - this is a big deal. I know it's not cancer or whatever the hell you think would be a big enough reason for me to worry, but I'm still worried.
Let me just say this again: Even if everything goes absolutely 100% as it should, by the book, perfect: This is still going to be a big deal for me.
Because all of those little sad faces that they give you in the ER so you can point out your pain? None of them is going to cover me anymore. Because I am already at the saddest face, I am already as high as the numbers will go, and now I'm volunteering for more: That is a hell of a big deal.
And I realize, as I am trying to find a conclusion to this very wandering post, that nobody who needs to read it will read it, because they don't know it's here. (Thank god!) But that maybe just writing it was the point, because all of the sudden I don't feel so ridiculous about being completely stressed out about this - It is a Big Deal for me, and it's something that I don't have to apologize for being a bit anxious about. So if I want to brainstorm reasons to back out of it, knowing that I won't actually back out of it, so be it.
Now, somebody give me a really good one, because "getting all the ice cream I want" is no longer on the pro side of the list: I'm an adult, and if I want ice cream, I will damn well eat it, surgery or no surgery.
Maybe I'll just add "because I'd rather go to Dairy Queen" to the list...
- Because the Lost series finale is on Sunday, and it is like a total pop culture moment (that I will be totally out of it for). Also, it will make me cry, and my face will probably hurt too much for crying.
- Because 6:30 is just too damn early in the morning.
- Because I have been availing myself of Dr. Google, and neither of us are pleased with what we see there.
- Because my throat isn't even hurting right now, and that is ridiculously rare! (Also: Do not currently have sinus infection! This is beyond rare... and should be appreciated.)
- Because how the hell am I going to take my regular meds? (Note to self: call tomorrow and see if there is liquid Lyrica.)
- Because... I don't wanna do it?
No: The surgery is set (fingers crossed, and barring any news from the pre-op people who still haven't called me), for 7:30 on Friday morning. I'm the first one in, which means I should also be the first one out. Which is good, because waiting is not my strong suit. All those people who comment on my 'patience' have never had to sit in a hospital waiting room with me while my mind buzzes ahead at 732 miles an hour. (Actually, some of them have, but usually I am good at hiding the buzz from people who aren't really paying attention.)
Of course, I am now coming up with a zillion different reasons why I should not let them cut open my nose or tear out the little bumps in the back of my throat, but I realize those are just my little anxieties popping up, and I try to pop them right back down. It's like one of those Whack-a-mole games: Up - Bam! - back down. Back UP - Bam! - back Down. I just have to keep bopping them on the head long enough to get to the hospital on Friday morning, at which point Mum will make me do it whether I want to or not, because she had to leave the house at 5:45 in the fricking morning.
Although I realize that it's not - in all likelihood - a life altering procedure, I'm pretty nervous about the whole thing (in case my endless blathering on about it here hasn't made that pretty obvious), but only because ... well, if you've been reading any of the blathering over the last 4-5 years, then you know why. Because medical science and NTE's body are not friends. Because whatever reaction you say it is impossible to have, then that is the reaction I will have. Because I'm in a place right now that isn't horrid and unlivable, and I am loathe to poke the bear and wind up there. Because if I wasn't nervous, at this point in my life, with this body and all of my experiences, then I would have to be pretty ignorant.
I know there are lots of people - somewhere in the midst of all those Temporarily Able Bodied people we people with disabilities talk about - that there are people who actually get up in the morning and never give a second thought to whether or not their body will respond in the way it ought. Who never have to second (third, fourth, fifth) guess a doctor's recommendation, or worry that things might not work out for them. I don't remember it, exactly: That ignorant feeling of being in control of my own body and what it was capable of, but I know that I am not one of those people anymore.
Back when I was dancing, there came a point, in the year or two right before I got sick, where I was constantly twisting my ankles. I must have sprained the right one 4 times in the course of a year and a half. And I mean seriously sprained - and even a slight fracture once. But I was 13, 14, 15, and it meant nothing - a week, two weeks, and I would be back dancing again, good as new. It honestly didn't occur to me that there could be any other outcome.
I was more fearless then: If I sprained something now, I would probably never attempt that activity again... I avoid things that cause even the most minor of injuries, go out of my way to avoid even the tiniest bit of extra pain.
Because here's the thing: Being in pain changes who you are. It changes how you see the world, how you fit into the world, how you interact with the world. Everything is a risk now. Opening my eyes, rolling over, tying my shoe. It's all a big deal, it's all a potential threat. And that's a horrible way to live, so I suppress it as much as I can. I don't overthink the little things (at least I try not to). I try to offset the extra neck tension I'll get from sitting at the table for dinner with a little extra ice pack time, or pencil in a hot shower because I decided to sit on the floor with little girl today.
You figure most things out, because you have to live.
But asking for extra pain? Going into something that is going to hurt, no matter what - even knowing that it's probably essential in the long run, well that's just incredibly risky to me. Because I can't assume that it's going to be fine, and I can't pretend that the extra pain - and oh, boy, does everybody agree that there's going to be extra pain - isn't almost a dealbreaker for me. And I shouldn't have to pretend, but in real life, I do.
The number of people - related to me, who have been witness to my illness from the beginning people - who have played oppression Olympics with me ("It's not as if it's a tumor their taking out/you're having chemo/you're losing something important" or have asked me what the "big deal is - you'll get to have tons of ice cream"? Is frustratingly high.
"But what are your other choices?" they ask. "You're going to keep getting sick right? So just let them do the little snip here, little poke there --- maybe get your tummy tucked or your boobs shrunk a little while you're under, ha ha --- and then it'll be fine" they say. (And no: I'm not talking about you, who was actually thinking about how combining surgeries would be helpful re: not having to do anesthesia twice. I'm talking about the more thoughtless among us).
Right, because A) This is totally a joke to me. and B)You're not the one who has to live in my body, in my level of pain, now or then. So you can't really tell me whether or not it's a big deal. You just have to take my word for it - this is a big deal. I know it's not cancer or whatever the hell you think would be a big enough reason for me to worry, but I'm still worried.
Let me just say this again: Even if everything goes absolutely 100% as it should, by the book, perfect: This is still going to be a big deal for me.
Because all of those little sad faces that they give you in the ER so you can point out your pain? None of them is going to cover me anymore. Because I am already at the saddest face, I am already as high as the numbers will go, and now I'm volunteering for more: That is a hell of a big deal.
And I realize, as I am trying to find a conclusion to this very wandering post, that nobody who needs to read it will read it, because they don't know it's here. (Thank god!) But that maybe just writing it was the point, because all of the sudden I don't feel so ridiculous about being completely stressed out about this - It is a Big Deal for me, and it's something that I don't have to apologize for being a bit anxious about. So if I want to brainstorm reasons to back out of it, knowing that I won't actually back out of it, so be it.
Now, somebody give me a really good one, because "getting all the ice cream I want" is no longer on the pro side of the list: I'm an adult, and if I want ice cream, I will damn well eat it, surgery or no surgery.
Maybe I'll just add "because I'd rather go to Dairy Queen" to the list...
Friday, May 14, 2010
So I'm sitting here
at quarter to three in the morning, after playing Family Feud on Facebook, and browsing on Etsy long enough to add a whole new page of favorite things, and typing up two long overdue, rambly and probably non-sensical e-mails, wondering what the hell I am going to do.
This surgery is on Friday, and - as of today - that is still a go. The liver issues seem to be under control (2nd set of liver tests = no problem, just like I suspected they would be), but I've got another round to go before I get the all-clear.
I do not like to be in limbo, and yet I seem to be spending an awful lot of time there.
So I am assuming that I am having the surgery on Friday, as in a week from today, and holy crap that is soon... which means I now have to figure out all of the things I need to do before Friday, in order to not have to worry about them after the surgery.
I've been stockpiling books (which I do anyways), and magazines that take little thought or effort. I've got a week or two worth of funny shows on my DVR that I specifically didn't watch, and a Netflix queue (instant and through mail) as long as my to-do list. I'm going to fill out all the paperwork for anything that might be due in week or two following the surgery - bills to be paid, mail to send, etc - today, and I'm saving the major clean up for Thursday, because I know I'll just mess everything up again anyways if I do it now.
I wanted to have a sleepover this weekend with No Longer Youngest Nephew, partly because I don't know when I'll be up to it again, and partly because I knew he'd be a great distraction, but it turns out he's got a Sunday baseball game, so (since I don't drive), that fell through. I've also invited College Roommate/Best Friend to come and visit, but she's usually weekend booked all the way through the end of the school year, so I'm not holding out much hope there either.
But I think if it's just me sitting here, things could get pretty dicey pretty quickly, so I'm just going to think of LOTS of things that need to be done between now and then, so I don't have time to obsess. Because obsessing is something I can be very good at, and it could lead to chickening out, which I am determined not to do, so, therefore (and, Off Topic: I really think the keyboard ought to have a Therefore symbol - maybe instead of the #... those three little circles in the shape of a triangle that came in so handy in freakin geometry, I could use those on my keyboard, just saying): Keeping Busy.
On the one hand, this is relatively minor surgery.
On the other hand, this is my body, which never reacts as the doctors say it 'should', and my face, which is already in enough pain, and myself, which also has enough pain and exhaustion to deal with, thank you very much... so this is the hand that will lead to the obsessing.
I'm trying to focus on that first hand instead. And this magical third hand that appeared out of nowhere to remind me that I will be under anesthesia, which means I will get some SLEEP. Real, actual, knock-me-out for a few hours sleep. The kind that my body has completely forgotten how to manufacture, and I will take whatever I can get. Artificially induced or not, I'm going to focus on the fact that a week from today, I will be taking a NAP. I know I cannot articulate exactly how awesome that will be, but let's just say that it almost makes me forget that they're going to be cutting out pieces of my body and sticking metal hooks up my nose. Almost.
In the meantime, I've got the itchy scratchies, but no actual energy to work them off, so I hope you'll excuse a few rambling blog posts, particularly if they're just serving as poor reminders to myself that this is not something to get all wimpy about.
Or about how I played Ms Pacman for the better part of two hours yesterday, and had over a million points because this was an online fake version of the game and when you ate the little 'turn the ghosts blue' pellets, the ghosts never changed back to their original colors unless you ate them, thus giving you the run of the board for ridiculously long periods of time. Ms. Pacman Champion, right here.
This surgery is on Friday, and - as of today - that is still a go. The liver issues seem to be under control (2nd set of liver tests = no problem, just like I suspected they would be), but I've got another round to go before I get the all-clear.
I do not like to be in limbo, and yet I seem to be spending an awful lot of time there.
So I am assuming that I am having the surgery on Friday, as in a week from today, and holy crap that is soon... which means I now have to figure out all of the things I need to do before Friday, in order to not have to worry about them after the surgery.
I've been stockpiling books (which I do anyways), and magazines that take little thought or effort. I've got a week or two worth of funny shows on my DVR that I specifically didn't watch, and a Netflix queue (instant and through mail) as long as my to-do list. I'm going to fill out all the paperwork for anything that might be due in week or two following the surgery - bills to be paid, mail to send, etc - today, and I'm saving the major clean up for Thursday, because I know I'll just mess everything up again anyways if I do it now.
I wanted to have a sleepover this weekend with No Longer Youngest Nephew, partly because I don't know when I'll be up to it again, and partly because I knew he'd be a great distraction, but it turns out he's got a Sunday baseball game, so (since I don't drive), that fell through. I've also invited College Roommate/Best Friend to come and visit, but she's usually weekend booked all the way through the end of the school year, so I'm not holding out much hope there either.
But I think if it's just me sitting here, things could get pretty dicey pretty quickly, so I'm just going to think of LOTS of things that need to be done between now and then, so I don't have time to obsess. Because obsessing is something I can be very good at, and it could lead to chickening out, which I am determined not to do, so, therefore (and, Off Topic: I really think the keyboard ought to have a Therefore symbol - maybe instead of the #... those three little circles in the shape of a triangle that came in so handy in freakin geometry, I could use those on my keyboard, just saying): Keeping Busy.
On the one hand, this is relatively minor surgery.
On the other hand, this is my body, which never reacts as the doctors say it 'should', and my face, which is already in enough pain, and myself, which also has enough pain and exhaustion to deal with, thank you very much... so this is the hand that will lead to the obsessing.
I'm trying to focus on that first hand instead. And this magical third hand that appeared out of nowhere to remind me that I will be under anesthesia, which means I will get some SLEEP. Real, actual, knock-me-out for a few hours sleep. The kind that my body has completely forgotten how to manufacture, and I will take whatever I can get. Artificially induced or not, I'm going to focus on the fact that a week from today, I will be taking a NAP. I know I cannot articulate exactly how awesome that will be, but let's just say that it almost makes me forget that they're going to be cutting out pieces of my body and sticking metal hooks up my nose. Almost.
In the meantime, I've got the itchy scratchies, but no actual energy to work them off, so I hope you'll excuse a few rambling blog posts, particularly if they're just serving as poor reminders to myself that this is not something to get all wimpy about.
Or about how I played Ms Pacman for the better part of two hours yesterday, and had over a million points because this was an online fake version of the game and when you ate the little 'turn the ghosts blue' pellets, the ghosts never changed back to their original colors unless you ate them, thus giving you the run of the board for ridiculously long periods of time. Ms. Pacman Champion, right here.
Friday, April 16, 2010
Recently, I received an advocacy alert from one of my various CFS/ME groups, concerning the possible inclusion of CFS in the newest version of the DSM. The DSM - Diagnostic and Statistical Manual of Mental Disorders - is the American Psychiatric Associations' guidebook when it comes to mental illnesses, and the idea that there would be a category under which CFS might (or could realistically) be grouped is terrifying. It's a huge step backwards in the fight for funding, understanding, treatment, and all of the other things patients with CFS often don't have the energy (or time, or resources) to continue to battle without end.
I took a while to craft a letter I felt managed to point out all of the issues that are inherent in such an inclusion, while also trying really hard not to abelist towards mental illnesses and their severity either: I really didn't want to say "Don't call us crazy!" and expect that that would be a worthwhile argument. It isn't - crazy is a word I'm trying to erase from my vocabulary, in the first place, but in the second, there's nothing worse about being mentally ill than there is about having any other form of chronic illness. So I didn't want my letter to make it seem as if I were saying, "Well, we have all these issues, but we're still better than that": Instead I wanted to make clear that having a classification that could include CFS (and, as you will see in my letter, just about any chronic illness) is a setback because it does not allow for a true understanding of our disease process - and that can have dire consequences. At least, that's the point I hope I was making... I'm open to (constructive) criticism, if you have any before Monday, which is the deadline for comments on this particular version of the diagnostic criteria.
You can find the full criteria Here, as well as a link to where you can submit your own comments.
I took a while to craft a letter I felt managed to point out all of the issues that are inherent in such an inclusion, while also trying really hard not to abelist towards mental illnesses and their severity either: I really didn't want to say "Don't call us crazy!" and expect that that would be a worthwhile argument. It isn't - crazy is a word I'm trying to erase from my vocabulary, in the first place, but in the second, there's nothing worse about being mentally ill than there is about having any other form of chronic illness. So I didn't want my letter to make it seem as if I were saying, "Well, we have all these issues, but we're still better than that": Instead I wanted to make clear that having a classification that could include CFS (and, as you will see in my letter, just about any chronic illness) is a setback because it does not allow for a true understanding of our disease process - and that can have dire consequences. At least, that's the point I hope I was making... I'm open to (constructive) criticism, if you have any before Monday, which is the deadline for comments on this particular version of the diagnostic criteria.
I'm writing to express my concern about the possible inclusion of Chronic Fatigue Syndrome as a "functional somatic syndrome", under the newly created category of Complex Somatic Symptom Disorder in the DSM-V.
First, I take issue with the vague and almost universally applicable criteria under which the CSSD could be diagnosed. Symptoms like
"A belief in the medical seriousness of their symptoms despite evidence to the contrary"; "Normal bodily symptoms are viewed as threatening and harmful"; "High level of health-related anxiety; "A tendency to assume the worst about their health (catastrophizing)"; &"Health concerns assume a central role in their lives." are so ambiguous as to be useless. Under this criteria, I would say that ANY chronic illness could be included as a somatic disorder. If you have heart disease, your "health concerns" will - if you intend to survive - most likely assume a "central role" in your life, and many previously "normal" symptoms could now be considered as potential threats. If you are diagnosed with cancer or HIV, I'm going to assume that a certain amount of "catastrophizing" would take place - there have been numerous books written about how a diagnosis of such an illness is not a death sentence: Would there be a need for those books if people didn't automatically assume that certain illnesses could mean the worst for them?
Creating this new category is to dismiss the very real worries and concerns of ANY patient, with ANY illness: It fails to take into account that, when confronted by an illness you cannot predict, you may sometimes become discouraged, fear the worst, or wonder if your newest ache or pain will be as devastating to your life as the previous one was. It takes what is human about a patient - the fact that they might make mistakes, or become anxious about something that is having an intense impact on their life - and turns it into something that is abnormal, something that should be seen as an illness. In so doing, you erase the humanity of all individuals with chronic illnesses.
If you fail to see that some of these behaviors - for example, having a high level of "health-related anxiety" - can, in fact, be positive coping mechanisms, you are invalidating the needs of a chronically ill patient. If a patient is proactive - if she sets a schedule for taking her meds, follows a nutritious diet, incorporates periods of rest and exercise as needed throughout the course of her day, & keeps up on the newest treatments and research regarding her disease, then yes: it is fair to say that "Health concerns are a central role in her life." However this is only to her benefit, and EXACTLY what doctors advise their chronically ill patients (and, with specific changes, their well patients) to do, no matter what their diagnosis might be. And yet, you plan to classify that as yet another symptom for a "disorder" that has no real medical definition. With "symptoms" so broadly and subjectively defined, the potential for misdiagnosis, and abuse towards patients whose illness are atypical, medically complicated, misunderstood, or rare is extremely high and frustratingly preventable...by simply excluding such a code, which would likely do more harm than good.
What other forms of harm, besides the very real danger of ignoring the physical deterioration of a patient due to misdiagnosis, might occur? Consider a recent study out of the Netherlands, which concluded that it is "unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies", such as Cognitive Behavior Therapy and Graded Exercise Therapy", two of the most widely used therapies for ME/CFS in the UK, and both recommended treatments for various current forms of somatoform disorders, or the fact that most SSRIs (which are also considered applicable treatments for somatoform disorders), tend not to be effective in treating CFS, and carry the risks of many serious side effects.
Somatiziation is the physical expression of psychological symptoms, and for the APA to claim, as experts and medical authorities, and with no room left for doubt, that the symptoms of CFS begin as psychological is not only to contradict the World Health Organization (which classifies it as neurological in basis), but also the US Centers for Disease Control (which stated, in 2006, that "There were no other factors, psychological or biological, that held up under thorough analysis"). It ignores the fact that in the UK ME/CFS patients have been banned from donating blood for over 20 years, that they were recently prevented from doing so in Canada, and that they are actively discouraged from doing so in the US. It also does not reflect a complete understanding of most of the current scientific research including viral implications, numerous biomarker studies; studies with immune system findings, neurological findings, CNS findings, genetic findings; and the complexity and interconnectivity of a disease like CFS. And it ignores the voices of the many experts and medical organizations focused on CFS research, including, but not limited to: Drs. Bell & Cheney, Dr. Komaroff, The Whittemore Peterson Institute, Dr. Klimas, & many others, who continue to search for the cause, treatment, and possible cures for this horrible disease.
I fail to see why, when biological science is stumped (or, in the case of CFS, more likely just ridiculously underfunded), putting the blame in the heads of patients is considered an acceptable solution. To include a definition of CSSD that could be applied to conditions like Chronic Fatigue Syndrome or Fibromyalgia is to forget the long - and embarrassing history - of unjust accusations of patients - or patient's families - "creating" their own illnesses - In the not too distant past, mothers were blamed for Autism, Type A personalities were blamed for causing ulcers, and both Multiple Sclerosis and Epilepsy have long been tainted by the incorrect assumption that they were caused by patient behavior.
Also important to note is the disconnect between medical science's understanding of men's bodies (and, therefore, diseases that are more likely to strike men) vs medical science's understanding of women's bodies (and, therefore, diseases, like CFS and FM, that are disproportionately more likely to affect women). From the fact that the term "neurasthenia" (aka "the vapors") - a term which the DSM itself tossed out years ago - is still being used in the UK to label CFS patients, to the woefully inadequate funding and research into diseases that have high populations of female patients, and how this would only contribute to the misuse of a CSSD coding.
I wish to be clear; Of course, for any person, chronically ill or not, there can be physical effects of psychological stress - You have only to suffer through one tension headache or witness a child so nervous that he loses his breakfast to know that this is true. But to state categorically that all of the symptoms of CFS patients (which can include sore throats, chronic infections, post-exertional fatigue, abdominal pain, unrefreshing sleep, irregular heartbeat, vertigo, muscle and joint pain, mental confusion, tender lymph nodes, allergies, night sweats, hypersensitivity to light, sound, smells, heat or cold, abdominal pain, blood pressure problems, and many, many more) can - definitively - be attributed to psychological factors, is to propose and support a falsehood.
I'd also like to refer you to a recent "Submission Re: DSM-V and ME/CFS" compiled by Professor Malcom Hooper and Margaret Williams of the 25% ME group (submitted 3-20-10) for an enlightening discussion about who would benefit from the inclusion of CFS as a CSSD, and the conflicts of interest evident in the DSM-V Somatic Symptom Disorder Work Group. (This work also includes a good summary of why the criteria are "so wide & non-specific that they have little clinical utility,"which I have already discussed.)
In conclusion, I urge you to consider the consequences of such an inaccurate and regressive inclusion - the potential for misuse/abuse/overuse of a non-specific coding for millions of affected patients; years of unhelpful and potentially dangerous drugs and therapies for patients who go to their physicians looking for answers; further & inhumane setbacks in the search for the real illness that is affecting these individuals, as well as the research that is necessary to find a cause, treatment & cure; and putting the DSM-V on the wrong side of medicine (and eventually, history).
I appreciate you taking the time to read my thoughts and concerns, and hope that you will take them into consideration as you make your final recommendations.
Sincerely, etc etc.
You can find the full criteria Here, as well as a link to where you can submit your own comments.
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