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.
Wednesday, July 04, 2012
Monday, June 25, 2012
Happy Arbitrary Day
Welcome to the Blog Carnival #83, for June 2012.
Our own Blog Carnival Leader Extraordinaire, Penney, starts us off with a post about the little known (at least to me) Infante Philip, the heir to the throne whose disabilities led to him being passed over as King of Spain & Naples. (Particularly striking to me was the line from his Wikipedia page that he had been "excluded from the succession to the thrones of Spain and Naples due to his imbecility.", which led me down the wormhole of imbecility -> Mental Retardation -> Euphemism Treadmill -> a discussion re: the evolution of people first language regarding disability.)
The Girl with the Cane gives her take on Disability & Religion, a topic that Ruth Madison also addresses some in her post We Are All Disabled. Ruth's post also makes some great points about disability being seen as 'lesser', and the inherent hierarchies even within the disability community.
Casey's post Cartesian Dualism & Chronic Pain not only gave me a fancy label for how I sometimes have to manage my pain (Cartesian - relating to Descartes, and discussing the mind-body connection/problem), but had a great first person account of how transcending one's pain can be both a positive and a negative for those of us with chronic pain.
In the political spectrum, I found this post by the Queen of Spain to be quite to the point (and hope that the Supreme Court sees the points this week as well).
Robert Rudney is the author of a new book, Lovers Lame, which portrays the romance between two main characters with disabilities, and seems really interesting. (You know I'm always on the lookout for new books: Hero & Heroine both have disabilities and the story talks about the differences between their situations and doesn't just glom them together because they happen to both have physical limitations? Immediate add to the TBR pile.) I also found his discussion about the book in the comments for this carnival to be quite interesting:
Sharon makes some excellent points about the challenges of writing with disabilities (lots of them echo my own experiences, for sure):
In a similar vein, there's this post by Wheelie Catholic, Do I Think About Walking, which I found in my Internet wanderings.
And to bring this edition of the Disability Blog Carnival to a close, we have this positive perspective contributed by Meriah, who's hosting her own Summer Disability Blog Hop each Wednesday, in her post What the Cultural Value of Disability and Star Trek Have in Common:
Our own Blog Carnival Leader Extraordinaire, Penney, starts us off with a post about the little known (at least to me) Infante Philip, the heir to the throne whose disabilities led to him being passed over as King of Spain & Naples. (Particularly striking to me was the line from his Wikipedia page that he had been "excluded from the succession to the thrones of Spain and Naples due to his imbecility.", which led me down the wormhole of imbecility -> Mental Retardation -> Euphemism Treadmill -> a discussion re: the evolution of people first language regarding disability.)
The Girl with the Cane gives her take on Disability & Religion, a topic that Ruth Madison also addresses some in her post We Are All Disabled. Ruth's post also makes some great points about disability being seen as 'lesser', and the inherent hierarchies even within the disability community.
Casey's post Cartesian Dualism & Chronic Pain not only gave me a fancy label for how I sometimes have to manage my pain (Cartesian - relating to Descartes, and discussing the mind-body connection/problem), but had a great first person account of how transcending one's pain can be both a positive and a negative for those of us with chronic pain.
In the political spectrum, I found this post by the Queen of Spain to be quite to the point (and hope that the Supreme Court sees the points this week as well).
Robert Rudney is the author of a new book, Lovers Lame, which portrays the romance between two main characters with disabilities, and seems really interesting. (You know I'm always on the lookout for new books: Hero & Heroine both have disabilities and the story talks about the differences between their situations and doesn't just glom them together because they happen to both have physical limitations? Immediate add to the TBR pile.) I also found his discussion about the book in the comments for this carnival to be quite interesting:
How many movies or TV shows present people with disabilities in romantic or sexual situations? Not many…Stacie's post, Masquerading, particularly hit home for me this month. She talks about how she felt she's pretending, passing as normal, when she spent time with her younger child while her older child with disabilities was in school. Because so much of her brain was still focused on the needs of that child, it often felt like 'pretense' or 'deception'. One of the reasons posting has been so light here this month is because I've mostly moved in with my grandmother and uncle, having realized just how desperate my grandmother's health situation is. I've got another (very long, complicated) post about this going up this week, but what I will say now is that whenever I'm away from the house - gone home to shower or to take my Tuesday with the kids - 85% or more of my brain is thinking about the situation here and what might be occurring in my absence, what I may have to put back together when I return. So that feeling of deception - keeping the happy face going for the kids, especially - is one I'm becoming quite familiar with.
One reason for writing Lovers Lame was to explode this misconception. The loving relationship between Christy and Jonathan, two individuals in wheelchairs, transcends their disabilities, societal norms, a serious accident, and pig-headed parents. With a little help from a sympathetic personal assistant, they achieve sexual fulfillment. They are the lucky ones, but they are fictional.
Sharon makes some excellent points about the challenges of writing with disabilities (lots of them echo my own experiences, for sure):
However, the biggest toll that my disabilities take on my blogging is in volume, frequency, and organization. I tend to write really long posts, and that’s often because I can’t keep track of what I’ve already said. I often make the same point repeatedly because I’ve forgotten that I’ve already made it. I start posts, run out of spoons, plan to finish them another time, and then never do — because I’m too sick. Because I’ve forgotten the point of what I wanted to say. Because I’ve written another post on a similar theme, forgetting that I already had something written on that topic. Because the content is no longer topical. I have approximately a hundred partial posts in my drafts bin here. Of course, my readers don’t see all these failed efforts because I don’t post them!Allison over at Gilbert & Me, (who was so patient when stupid Blogger kept marking her comment as spam), has submitted an older post that is poetic and honest and beautiful, called What Does Seeing Feel Like In it, she discusses all the things she thinks she'd like to see, if given the opportunity. She discusses so many aspects of sight and blindness that I, because vision is not an issue for me, had not considered before, and although it's kind of long, I urge you to read the whole thing if you can. I think the part I liked best about it is that she expresses a natural curiosity about how things might be different and does it in a way that shows all those tropes about how people with disabilities feel sorry for themselves are just a bunch of BS. Case in point:
In the same way that my parents get carried away discussing how they would use their lottery winnings first to pay off all the bills, and then live out the rest of their days quietly in a modest house, in a community where no one knew them to avoid being scammed or robbed, I think about how I would react if suddenly, I could see. ... But until then, I can accept staring longingly over a figurative fence in awe and wonder at the sighted world while sighted people stare back in amazement of me as the way my life was meant to be.
In a similar vein, there's this post by Wheelie Catholic, Do I Think About Walking, which I found in my Internet wanderings.
And to bring this edition of the Disability Blog Carnival to a close, we have this positive perspective contributed by Meriah, who's hosting her own Summer Disability Blog Hop each Wednesday, in her post What the Cultural Value of Disability and Star Trek Have in Common:
We don't look at the contribution of disability in and of itself, you see. We are not looking at disability and seeing it as an opportunity for growth, change, forward movement and advancement of our human race as a whole: we are looking at it like it's a problem. Something to be fixed. Broken bits of human flesh that need mending. We are trying to shove people that are especially unique into a mold that just does not fit, rather than looking at the mold and wondering how we can get rid of it, the mold.That's it for June's edition of the Disability Blog Carnival, this Arbitrary Day: Hope you all are as well as possible, and that you'll keep your eyes open for next month's Carnival, wherever it might be.
Friday, June 01, 2012
Hey, All, it's June
Which means that I'm going to be posting this month's edition of the Disability Blog Carnival - #83 - The post is going to go up on June the 25th, and (in honor of Arbitrary Day) can be about anything disability related your little heart desires: an old post that's a particular favorite of yours that you wish more people had seen, a brand, shiny new post that you're going to write specifically for the Carnival, a rant, a rave, a list - whatever floats your particular boat.
You can post the links on this page, or just leave a comment if you want me to send you my e-mail address (as that link has conveniently disappeared from my template for some strange reason). I do ask that you do your best to make your website as accessible as possible... for me, that means making visual descriptions of things and leaving the captcha off of commenting, when I have the spoons. (And understanding that other people might not have the spoons, when I come across a site that doesn't follow that same protocol.) Submissions will be open till the 23rd, just so I have a chance to compile them all, because last time I hosted there weren't too many, and I had to do some filling in with some favorite posts by other people, which meant remembering where the heck I'd read something, which is an iffy proposition sometimes for me.
Happy June, everybody!
You can post the links on this page, or just leave a comment if you want me to send you my e-mail address (as that link has conveniently disappeared from my template for some strange reason). I do ask that you do your best to make your website as accessible as possible... for me, that means making visual descriptions of things and leaving the captcha off of commenting, when I have the spoons. (And understanding that other people might not have the spoons, when I come across a site that doesn't follow that same protocol.) Submissions will be open till the 23rd, just so I have a chance to compile them all, because last time I hosted there weren't too many, and I had to do some filling in with some favorite posts by other people, which meant remembering where the heck I'd read something, which is an iffy proposition sometimes for me.
Happy June, everybody!
Monday, May 28, 2012
We survived & I remember
My grandfather came home from fighting in Europe during World War II, and never drove a vehicle again in his life: He'd seen the jeep full of soldiers in front of him drive off the side of a mountain as he followed behind driving a supply truck for the convoy.
My great-grandfather survived a torpedo strike on his ship, and walked away with a piece of the ship he served on: we have it here, in a box of my grandmother's stuff, and I didn't know anything about it until I looked it up. **
My great-great-great grandfather was killed on his way home for registering to fight for the Union in the Civil War: a bridge was washed out, and he was washed along with it.
Five of my great-uncles fought during WWII, and managed to come back alive: one of them was a medic at D-Day, and wrote back to his sister (my grandmother) that his "worst fear was coming across my brother, blown to bits, and knowing I wouldn't be able to put him back together." He served for three years, hiding the fact that he was blind in one eye for his entire tour of duty.
My uncles served: Korea, Vietnam, (relative) peacetime. On ships, planes and submarines.
My cousin was the most handsome man I'd ever seen in uniform, and his father said the military made him better than he knew he could be, (which only makes sense if you know that my cousin always thought he could be anything, so that's really saying something).
My dad served for the first 15 years of my life, fought in Iraq, Desert Storm, as I sat, frozen in front of the television screen watching as little green bombs lit up the night-vision sky, blasting away people and lives, worried I'd never hear from him again. He came home, eventually, but he didn't come home whole. He told my brother once that he was a Navy Seal: I don't know if it's true or not, but it comforts my brother to think of all the heroic things he did while he was away from us. It doesn't comfort me much. I don't know what he saw or did while he was in the Navy, I only know that it took him away from me when I was a little girl, and took it's toll on him when he came back. He didn't get help for what was (arguably, but most likely) some very real PTSD - he didn't think he had a problem with drinking, and he'd fight you if you tried to talk to him about it. He wasn't depressed, except for when her was really depressed, and that was all someone else's fault anyways, so what did he need help for?
And when he died, we still had his ashes scattered at sea. The Navy sent us a DVD of the ceremony: short, sacred, solemn. Gone.
So, it's Memorial Day, and I remember: Nurses who served at hospitals, filling in for the ones that got sent overseas. Youngest brothers who moved their new families home to Boston because all of the older brothers had to go fight and someone had to stay with their parents. The creaks of metal being pressurized as you take your first dive in a submarine and pray that the stupid thing holds. Rising to the highest civilian rank in the Air Force and being accepted as the 'boss of the base.' And all the mothers and sisters and daughters and wives, sons and fathers and brothers, who waited at home. The soldiers who came back, the soldiers who didn't, and the soldiers who only sort-of did.
I remember.
**The ship was the USS Mt Vernon , in case you're interested. (There's also pictures of my Dad, Grandfather & Great- Grandfather in their uniforms.)
My great-grandfather survived a torpedo strike on his ship, and walked away with a piece of the ship he served on: we have it here, in a box of my grandmother's stuff, and I didn't know anything about it until I looked it up. **
My great-great-great grandfather was killed on his way home for registering to fight for the Union in the Civil War: a bridge was washed out, and he was washed along with it.
Five of my great-uncles fought during WWII, and managed to come back alive: one of them was a medic at D-Day, and wrote back to his sister (my grandmother) that his "worst fear was coming across my brother, blown to bits, and knowing I wouldn't be able to put him back together." He served for three years, hiding the fact that he was blind in one eye for his entire tour of duty.
My uncles served: Korea, Vietnam, (relative) peacetime. On ships, planes and submarines.
My cousin was the most handsome man I'd ever seen in uniform, and his father said the military made him better than he knew he could be, (which only makes sense if you know that my cousin always thought he could be anything, so that's really saying something).
My dad served for the first 15 years of my life, fought in Iraq, Desert Storm, as I sat, frozen in front of the television screen watching as little green bombs lit up the night-vision sky, blasting away people and lives, worried I'd never hear from him again. He came home, eventually, but he didn't come home whole. He told my brother once that he was a Navy Seal: I don't know if it's true or not, but it comforts my brother to think of all the heroic things he did while he was away from us. It doesn't comfort me much. I don't know what he saw or did while he was in the Navy, I only know that it took him away from me when I was a little girl, and took it's toll on him when he came back. He didn't get help for what was (arguably, but most likely) some very real PTSD - he didn't think he had a problem with drinking, and he'd fight you if you tried to talk to him about it. He wasn't depressed, except for when her was really depressed, and that was all someone else's fault anyways, so what did he need help for?
And when he died, we still had his ashes scattered at sea. The Navy sent us a DVD of the ceremony: short, sacred, solemn. Gone.
So, it's Memorial Day, and I remember: Nurses who served at hospitals, filling in for the ones that got sent overseas. Youngest brothers who moved their new families home to Boston because all of the older brothers had to go fight and someone had to stay with their parents. The creaks of metal being pressurized as you take your first dive in a submarine and pray that the stupid thing holds. Rising to the highest civilian rank in the Air Force and being accepted as the 'boss of the base.' And all the mothers and sisters and daughters and wives, sons and fathers and brothers, who waited at home. The soldiers who came back, the soldiers who didn't, and the soldiers who only sort-of did.
I remember.
**The ship was the USS Mt Vernon , in case you're interested. (There's also pictures of my Dad, Grandfather & Great- Grandfather in their uniforms.)
Friday, May 25, 2012
"Some heavy ammunition on your side..."
Just before Christmas, when everything was going
berserk with Grandmother (again) and me (as usual) and Mom (which was new) and all the usual
December craziness (birthdays and shopping and Christmas and doctors, oh my), something happened that hasn't happened to me in a long time, and I've been trying to write about it since, but the words didn't come till now.
I hope getting it out there will stop making it so important in my mind. I write about everything here, so (even though it feels raw still) it'll be worth saying it 'out loud', as it were.
----
Mom & I were driving out to see Grandmother at the rehab (like we were doing every day at that point), and I'd spent the morning chopping up all the ingredients for beef stew and thrown them in the crock pot and turned it on low before we left. And I'm sitting in the car and mom makes some random comment about leaving things on and fires, and blah blah blah, and instead of just being a piece of our normal everyday conversation, it was like SPARK! and that tiny little off-hand remark managed to ignite an instant fire in my brain.
Immediately I started to worry about the crock pot, to reanalyze ever step I'd taken in making the stew - had I really turned it on low, or had I set it to high and it would burn the meat so quickly that it would catch fire? Was it safe to turn it on and leave the house at any setting? Have we ever done this before, even though I read about it all the time on the internet, that people make crock pot stuff and then go to work with it cooking, have we ever personally tried it before? Are we too far from the house to go back and turn it off? Just a constant stampede of 'could I be setting the house of fire' thoughts tumbling around in my brain, while I'm attempting to still chat with mom and seem like everything is ok.
Meanwhile, I know that what I'm worrying about is stupid: We leave all sorts of things - computers, cable boxes, the fridge, the dryer - on at home by themselves all the time. Nothing has ever happened, nothing is going to happen. House fires are rare, and I was careful and made sure the crock pot wasn't near anything and was on low, and I know all of this, and yet, I can't stop worrying. Some fifteen minutes later, it's still in my brain, still rolling around in there, maybe even picking up speed, because it's loud enough now that I've said it out loud, trying to make it seem casual, trying to act like we're still joking. Ha ha! we laugh, as I say "but that wouldn't really happen, right?" Big laughs all around.
Still, 25 minutes into the ride, and now I've been muttering about it and obsessing about it for our entire ride, and my next deliberately casual "It's not dangerous to have left that cooking, right?" pops out of my mouth and Mom says sharply "Oh my god: just let it go already!" Which is the normal response, if a person is just being stupid about something, and it's driving you crazy. But this wasn't just normal "oh, gee: random thought - let's giggle about this some more!" comment.
Nope, by this point I was full steam ahead into my first real anxiety attack in years.
I've had minor ones here and there - during other people's drunken fights, mostly, when I would swear some sort of PTSD part of my brain kicks in and I have to excuse myself from the tension of the current screaming match to go throw up before I can wade into things (either as peacekeeper or firebrand). Sometimes just the sound of the cork popping out of the wine bottle in the kitchen is enough to have my shoulders creeping upwards with tension. But for the most part, I've managed them, and managed to avoid them (which is even better). I wouldn't even say that anxiety is one of my top 20 CFIDS symptoms, probably because I was never not a slightly apprehensive person: it's just part of my genetic make up, I'm afraid.
But these huge panic attacks - of which I've (thankfully) only had about 6 - these huge, really full blown, tornado brain of worry, hold your shit together or you'll lose it monstrosities. When those mothers come, it's so frightening, because you know you don't have to be worrying about the thing, or that worrying about it won't help the situation at all, but you just can't stop yourself. Your brain is a runaway worry train, and you're just along for the ride.
So she snaps at me, semi-facetiously, and I burst into tears. 'It doesn't help,' I tell her 'to tell me that the thing I'm worrying about is stupid. I KNOW IT'S STUPID. Now I just feel even more anxious because I'm ashamed that I'm freaking out over something so dumb."
But here's the thing that people who don't have anxiety don't get. To people without panic attacks (those lucky bastards), it's just like regular worry: "Oh I feel like maybe that wasn't the best choice," but it's not a big deal, because Oh well, shrug. People will worry. It happens. I'm a champion worrier, and that's not what a panic attack is - for me at least. Worry is one thing, panic attack is a whole 'nother level of worry, combined with an astronomical confidence level - confidence in the truth of the fear, that is.
A panic attack is not just dread, but certainty. It is an absolute conviction of doom. I may know full well that whatever has set this off is a ridiculous thing to be worried about, but I am still 1000% sure in my gut that it doesn't matter that the odds are astronomical that something could go wrong: something is telling me that it's not right, so it must be so. Something is warning me to fix the situation, and I'm not heeding the warning, and that goes against every instinct you have. In this case, all the signs are all pointing to the idea that the house will have burned down by the time we get home, and I'm supposed to blithely ignore that and continue on with our day as if nothing is wrong? Impossible: it feels WRONG.
That's when the logical part of my brain shrinks down to nothing, and instead I remember all those news stories about people who 'listened to their gut' and saved their families. Or I replay all the times my feeling that something wasn't right was an accurate representation of the situation, and try to convince myself that this time it's ok to ignore all the DANGERDANGERDANGER signals my brain is trying to send me.
I dripped tears for the remainder of our ride, playing the tapes in my head that I know work to calm me: 'This is just a panic attack, it will pass. This is SO not about the beef stew chica: you're life is feeling more than a little bit out of control right now, don't ya think? Let's just ride this one out, and things will get better. You are not psychic, and the house is not burning down while you ignore all the warning signs - this is not a real threat.' But because it feels like a real threat, it takes me the whole ride to calm down.
I'm not shaking by the time we get to the rehab, but I'm still so ashamed - of the panic attack; of the tears, of not handling things like a grown up and instead breaking down into something useless; of the fact that I've broken a streak of panic! attack! free! years! over something so ridiculous - that we cut short our visit and go home relatively early. I know that this is mom's way of apologizing for snapping at me (which, was nice but I'm not sure it was necessary), and reassuring me all at once.
We arrive home to stew - nothing more. Once I calmed down enough, 99% of me was sure that was all we'd find. But the whole ride home, there's that one percent, that one embarrassed, fear-soaked percent, that's trying to get me ready to deal with the fact that I've failed to save all of our worldly possessions, just because I didn't trust myself enough to say "let's go home and I'll shut that off, and then we'll go." And because of that one measly percent, I'm not reassured, because once that panic genie is out of the bottle, I don't know if I'll be able to stopper him up again.
-----
That's why it took me five months to write this post: because god forbid that I tried to tap back into that feeling enough to write about it, and it exploded all over me again. I had to be sure enough of where I was, emotionally, to write about that, and even that feels like a weakness to me: to be so scared of remembering how scared I was? Panic attacks are ridiculous.
And I was right, about the genie part - I've felt him trying to creep up on me a few times since, but I'm better at recognizing it than I used to be, so I've been cutting them off before the fear can blossom on me (for the most part). And some pretty stressful shit has gone down since then, so I'm feeling like I've got a handle on managing it right now, which is good.
Because the next time I let something out of a bottle, it better be granting wishes, not paralyzing me with fear. (Look: wish number one is all ready!)
I hope getting it out there will stop making it so important in my mind. I write about everything here, so (even though it feels raw still) it'll be worth saying it 'out loud', as it were.
----
Mom & I were driving out to see Grandmother at the rehab (like we were doing every day at that point), and I'd spent the morning chopping up all the ingredients for beef stew and thrown them in the crock pot and turned it on low before we left. And I'm sitting in the car and mom makes some random comment about leaving things on and fires, and blah blah blah, and instead of just being a piece of our normal everyday conversation, it was like SPARK! and that tiny little off-hand remark managed to ignite an instant fire in my brain.
Immediately I started to worry about the crock pot, to reanalyze ever step I'd taken in making the stew - had I really turned it on low, or had I set it to high and it would burn the meat so quickly that it would catch fire? Was it safe to turn it on and leave the house at any setting? Have we ever done this before, even though I read about it all the time on the internet, that people make crock pot stuff and then go to work with it cooking, have we ever personally tried it before? Are we too far from the house to go back and turn it off? Just a constant stampede of 'could I be setting the house of fire' thoughts tumbling around in my brain, while I'm attempting to still chat with mom and seem like everything is ok.
Meanwhile, I know that what I'm worrying about is stupid: We leave all sorts of things - computers, cable boxes, the fridge, the dryer - on at home by themselves all the time. Nothing has ever happened, nothing is going to happen. House fires are rare, and I was careful and made sure the crock pot wasn't near anything and was on low, and I know all of this, and yet, I can't stop worrying. Some fifteen minutes later, it's still in my brain, still rolling around in there, maybe even picking up speed, because it's loud enough now that I've said it out loud, trying to make it seem casual, trying to act like we're still joking. Ha ha! we laugh, as I say "but that wouldn't really happen, right?" Big laughs all around.
Still, 25 minutes into the ride, and now I've been muttering about it and obsessing about it for our entire ride, and my next deliberately casual "It's not dangerous to have left that cooking, right?" pops out of my mouth and Mom says sharply "Oh my god: just let it go already!" Which is the normal response, if a person is just being stupid about something, and it's driving you crazy. But this wasn't just normal "oh, gee: random thought - let's giggle about this some more!" comment.
Nope, by this point I was full steam ahead into my first real anxiety attack in years.
I've had minor ones here and there - during other people's drunken fights, mostly, when I would swear some sort of PTSD part of my brain kicks in and I have to excuse myself from the tension of the current screaming match to go throw up before I can wade into things (either as peacekeeper or firebrand). Sometimes just the sound of the cork popping out of the wine bottle in the kitchen is enough to have my shoulders creeping upwards with tension. But for the most part, I've managed them, and managed to avoid them (which is even better). I wouldn't even say that anxiety is one of my top 20 CFIDS symptoms, probably because I was never not a slightly apprehensive person: it's just part of my genetic make up, I'm afraid.
But these huge panic attacks - of which I've (thankfully) only had about 6 - these huge, really full blown, tornado brain of worry, hold your shit together or you'll lose it monstrosities. When those mothers come, it's so frightening, because you know you don't have to be worrying about the thing, or that worrying about it won't help the situation at all, but you just can't stop yourself. Your brain is a runaway worry train, and you're just along for the ride.
So she snaps at me, semi-facetiously, and I burst into tears. 'It doesn't help,' I tell her 'to tell me that the thing I'm worrying about is stupid. I KNOW IT'S STUPID. Now I just feel even more anxious because I'm ashamed that I'm freaking out over something so dumb."
But here's the thing that people who don't have anxiety don't get. To people without panic attacks (those lucky bastards), it's just like regular worry: "Oh I feel like maybe that wasn't the best choice," but it's not a big deal, because Oh well, shrug. People will worry. It happens. I'm a champion worrier, and that's not what a panic attack is - for me at least. Worry is one thing, panic attack is a whole 'nother level of worry, combined with an astronomical confidence level - confidence in the truth of the fear, that is.
A panic attack is not just dread, but certainty. It is an absolute conviction of doom. I may know full well that whatever has set this off is a ridiculous thing to be worried about, but I am still 1000% sure in my gut that it doesn't matter that the odds are astronomical that something could go wrong: something is telling me that it's not right, so it must be so. Something is warning me to fix the situation, and I'm not heeding the warning, and that goes against every instinct you have. In this case, all the signs are all pointing to the idea that the house will have burned down by the time we get home, and I'm supposed to blithely ignore that and continue on with our day as if nothing is wrong? Impossible: it feels WRONG.
That's when the logical part of my brain shrinks down to nothing, and instead I remember all those news stories about people who 'listened to their gut' and saved their families. Or I replay all the times my feeling that something wasn't right was an accurate representation of the situation, and try to convince myself that this time it's ok to ignore all the DANGERDANGERDANGER signals my brain is trying to send me.
I dripped tears for the remainder of our ride, playing the tapes in my head that I know work to calm me: 'This is just a panic attack, it will pass. This is SO not about the beef stew chica: you're life is feeling more than a little bit out of control right now, don't ya think? Let's just ride this one out, and things will get better. You are not psychic, and the house is not burning down while you ignore all the warning signs - this is not a real threat.' But because it feels like a real threat, it takes me the whole ride to calm down.
I'm not shaking by the time we get to the rehab, but I'm still so ashamed - of the panic attack; of the tears, of not handling things like a grown up and instead breaking down into something useless; of the fact that I've broken a streak of panic! attack! free! years! over something so ridiculous - that we cut short our visit and go home relatively early. I know that this is mom's way of apologizing for snapping at me (which, was nice but I'm not sure it was necessary), and reassuring me all at once.
We arrive home to stew - nothing more. Once I calmed down enough, 99% of me was sure that was all we'd find. But the whole ride home, there's that one percent, that one embarrassed, fear-soaked percent, that's trying to get me ready to deal with the fact that I've failed to save all of our worldly possessions, just because I didn't trust myself enough to say "let's go home and I'll shut that off, and then we'll go." And because of that one measly percent, I'm not reassured, because once that panic genie is out of the bottle, I don't know if I'll be able to stopper him up again.
-----
That's why it took me five months to write this post: because god forbid that I tried to tap back into that feeling enough to write about it, and it exploded all over me again. I had to be sure enough of where I was, emotionally, to write about that, and even that feels like a weakness to me: to be so scared of remembering how scared I was? Panic attacks are ridiculous.
And I was right, about the genie part - I've felt him trying to creep up on me a few times since, but I'm better at recognizing it than I used to be, so I've been cutting them off before the fear can blossom on me (for the most part). And some pretty stressful shit has gone down since then, so I'm feeling like I've got a handle on managing it right now, which is good.
Because the next time I let something out of a bottle, it better be granting wishes, not paralyzing me with fear. (Look: wish number one is all ready!)
Wednesday, May 16, 2012
Having a bedtime
I know we've talked about my CFS-related insomnia before, but it's tearing off little pieces of my life right now, so I'm going to talk about it again. Feel free to move along: probably the only thing worse than listening to someone tell you random half-stories about their dreams is listening to someone ranting about how they're not sleeping. Which is exactly what I'm going to do right now.
For the past few months, I'd thought my insomnia might be improving. It was tiny steps like closing my eyes and not opening them again every 36 seconds, or fading out during a show and realizing that I'd missed more than one set of commercials that made me start to think "holy shit: I was actually asleep there for a few minutes!", and led me to hope that maybe, just maybe, this cycle of painsomnia was letting up. I did all the things you're supposed to do to create an 'optimal sleeping environment' (as my sleep specialist likes to call it): gave myself a strict bedtime (midnight: anything earlier than that was too depressing, and made nights seem endless) at which point I shut off all electrical appliances - TV and lights off, computer shut, etc - opened the window a little bit (because your room should be slightly chilly to help you sleep), and increased the number of hot showers I was taking (because there's something about hot showers and your body gradually cooling itself that is supposed to be helpful with sleeping). All the little tricks I knew that helped me, I put into effect - Initiate Operation SLEEP NOW PLEASE!!
And the thing is, maybe that all seems like common sense to you, but to somebody like me, it's also kind of scary. Sleep is kind of scary. Because there was a time (I was going to say 'not too long ago,' but then I counted back and it's close to ten years, so I guess that was a while ago) where sleeping was all I could do. Sleep was as involuntary then as not sleeping is now and it consumed my whole life. I had to schedule my classes around when I could nap; I slept through people's birthday parties and graduations, my own prom and more than one family activity. I would wake up exhausted (so, basically no difference there), even though I had slept for 8 hours, 10 hours, 14, or 17 hours. My whole life was sleep based (again, no difference, just now it's based on the fact that sleep won't come), and there was nothing I could do without first balancing it out with hours of sleep in my mental ledger: 2 hours of class, then an hour nap. 1 day of student teaching, a 1/2 hour nap at lunch and then a four hour nap back at the dorms. Best friend's getting married, stay up till 1:00 (even though everybody else went out afterwards and stayed up till 7), sleep for a day and a half until your mother wakes you up, worried that you've not eaten in 36 hours.
That's how all encompassing sleep was for me, before the switch flipped and insomnia took its place. So while I long for sleep - long for it with the "I will sell you my immortal soul" type of desperation only other insomniacs can truly appreciate - I'm still pretty afraid that my body will flip the switch in the other direction, and I'll once again transform into some sort of Rip Van Winkle-tte. So taking steps to improve my sleep is one of those double edged swords you're always hearing about - you know, the only kind that's really useful, but you take a large chance that you'll get stabbed by it in the process.
Unfortunately. those few good signs have all but dried up again, and my commitment to creating a sleep Utopia flew out the window right after them. Even if I shut everything down at midnight, I've more than likely turned it all back on again by 1 - my patience for tossing and turning is at an all time low, and every wrinkle in the sheet seems mountainous and villainous, and I start debating whether or not I could create enough of a spark with my heating pad to set the whole damn thing on fire, or if the mattress will fit through my window, should I decide to pitch it out there. Evil NTE comes out at night and dreams up ways to curse the entire sleeping world, or super-empathetic NTE takes over and spends all night watching documentaries about the saddest people who've ever existed in the universe. (Side note - If I am Youtube surfing at night, no matter how seemingly innocent a search I have started off with, I will -without fail- somehow wind up on a clip that will make me bawl. I started out watching old songs from Sesame Street (1-2-3-4-5-6-7-8-9-10-11-12 Ladybugs, at the ladybug picnic), and ended up watching Big Bird sing at Jim Henson's memorial service, at which point, my eyes were swollen shut, and I decided that was as close to sleep as I was going to get, and closed the computer.)
I saw someone use the term Painsomnia (on the Twitter, I think), and it was like "Hello word: I'm so glad someone has created you because you are exactly what I have been trying to say for ten years, but couldn't." Painsomnia is exactly right, because if I wasn't all Princess & the Pea because of the stupid fibromyalgia, I might be able to get 15 consecutive minutes of sleep in, and I wouldn't be here, again, ranting about the fact that I didn't sleep last night. I wouldn't be in complete zombie mode today, after 4 really tough nights, during which I saw every minute of the sunrise, and tried to translate the morning birdsong into English. (I think the robin who lives in my neighbor's tree is very upset about the 2012 political scene. Maybe.)
But I'm re-initiating the bedtime tonight, because it feels like the thing to do. Maybe it'll help, more likely I will spend 6.5 hours listening to a dead DJ being replayed on the fuzziest AM radio station my radio can reach (that's a story for another time), but at least I'll feel like I'm doing something.
Although, I can't promise I won't be back here all the earlier in the morning, complaining again.
For the past few months, I'd thought my insomnia might be improving. It was tiny steps like closing my eyes and not opening them again every 36 seconds, or fading out during a show and realizing that I'd missed more than one set of commercials that made me start to think "holy shit: I was actually asleep there for a few minutes!", and led me to hope that maybe, just maybe, this cycle of painsomnia was letting up. I did all the things you're supposed to do to create an 'optimal sleeping environment' (as my sleep specialist likes to call it): gave myself a strict bedtime (midnight: anything earlier than that was too depressing, and made nights seem endless) at which point I shut off all electrical appliances - TV and lights off, computer shut, etc - opened the window a little bit (because your room should be slightly chilly to help you sleep), and increased the number of hot showers I was taking (because there's something about hot showers and your body gradually cooling itself that is supposed to be helpful with sleeping). All the little tricks I knew that helped me, I put into effect - Initiate Operation SLEEP NOW PLEASE!!
And the thing is, maybe that all seems like common sense to you, but to somebody like me, it's also kind of scary. Sleep is kind of scary. Because there was a time (I was going to say 'not too long ago,' but then I counted back and it's close to ten years, so I guess that was a while ago) where sleeping was all I could do. Sleep was as involuntary then as not sleeping is now and it consumed my whole life. I had to schedule my classes around when I could nap; I slept through people's birthday parties and graduations, my own prom and more than one family activity. I would wake up exhausted (so, basically no difference there), even though I had slept for 8 hours, 10 hours, 14, or 17 hours. My whole life was sleep based (again, no difference, just now it's based on the fact that sleep won't come), and there was nothing I could do without first balancing it out with hours of sleep in my mental ledger: 2 hours of class, then an hour nap. 1 day of student teaching, a 1/2 hour nap at lunch and then a four hour nap back at the dorms. Best friend's getting married, stay up till 1:00 (even though everybody else went out afterwards and stayed up till 7), sleep for a day and a half until your mother wakes you up, worried that you've not eaten in 36 hours.
That's how all encompassing sleep was for me, before the switch flipped and insomnia took its place. So while I long for sleep - long for it with the "I will sell you my immortal soul" type of desperation only other insomniacs can truly appreciate - I'm still pretty afraid that my body will flip the switch in the other direction, and I'll once again transform into some sort of Rip Van Winkle-tte. So taking steps to improve my sleep is one of those double edged swords you're always hearing about - you know, the only kind that's really useful, but you take a large chance that you'll get stabbed by it in the process.
Unfortunately. those few good signs have all but dried up again, and my commitment to creating a sleep Utopia flew out the window right after them. Even if I shut everything down at midnight, I've more than likely turned it all back on again by 1 - my patience for tossing and turning is at an all time low, and every wrinkle in the sheet seems mountainous and villainous, and I start debating whether or not I could create enough of a spark with my heating pad to set the whole damn thing on fire, or if the mattress will fit through my window, should I decide to pitch it out there. Evil NTE comes out at night and dreams up ways to curse the entire sleeping world, or super-empathetic NTE takes over and spends all night watching documentaries about the saddest people who've ever existed in the universe. (Side note - If I am Youtube surfing at night, no matter how seemingly innocent a search I have started off with, I will -without fail- somehow wind up on a clip that will make me bawl. I started out watching old songs from Sesame Street (1-2-3-4-5-6-7-8-9-10-11-12 Ladybugs, at the ladybug picnic), and ended up watching Big Bird sing at Jim Henson's memorial service, at which point, my eyes were swollen shut, and I decided that was as close to sleep as I was going to get, and closed the computer.)
I saw someone use the term Painsomnia (on the Twitter, I think), and it was like "Hello word: I'm so glad someone has created you because you are exactly what I have been trying to say for ten years, but couldn't." Painsomnia is exactly right, because if I wasn't all Princess & the Pea because of the stupid fibromyalgia, I might be able to get 15 consecutive minutes of sleep in, and I wouldn't be here, again, ranting about the fact that I didn't sleep last night. I wouldn't be in complete zombie mode today, after 4 really tough nights, during which I saw every minute of the sunrise, and tried to translate the morning birdsong into English. (I think the robin who lives in my neighbor's tree is very upset about the 2012 political scene. Maybe.)
But I'm re-initiating the bedtime tonight, because it feels like the thing to do. Maybe it'll help, more likely I will spend 6.5 hours listening to a dead DJ being replayed on the fuzziest AM radio station my radio can reach (that's a story for another time), but at least I'll feel like I'm doing something.
Although, I can't promise I won't be back here all the earlier in the morning, complaining again.
Friday, May 11, 2012
That's ok: I don't need to shower
So I just had my reevaluation for my participation in our state's Personal Care Assistant program - the program I use to pay my mom for doing things like buying groceries and helping me shower. I've been in the program for about 6 years or so, and every time the people come out - and it's never the same people - they tell me something different. At my initial intake (done 3 agencies ago), the nurse and the case manager came together, sat with me and basically explained how I didn't qualify for 3/4 of the stuff I really need help with - like cooking and cleaning and whatnot - because I live at home, and "the other people you live with are expected to pick up those tasks." That was news to both them and me, I assure you. And considering that one of the stated goals of the program is to "help clients live as independent a life as possible", kind of contrary to what we were supposed to be accomplishing. But they were right - six years later, I still am not technically approved for the majority of what my actual needs are: someone to dust when I'm not around (bc of the asthma); somebody to bring groceries into the house and maybe get them made into a meal once in a while; all the toting and lugging of me and my chair to various non-medical appointments, etc.
We filled out the paper work, with our best case scenarios, and nobody was surprised when the decision came back from Mass Health approved for significantly less hours than were necessary. Significantly less hours than a qualified nurse and my own doctor considered necessary, I might add. But I took what I could get, because, especially at that point, any financial help was better than the nothing I was getting. The kicker, in regards to my hours, is that I was approved for 30 minutes of "medical related" travel time A WEEK.
30 minutes of medical related travel time happens at least 3 times a week, and that doesn't even include the actual appointments.
At another evaluation, the nurse told me that I qualified for an additional stipend, because of a new part of the program, and that she would put in the paperwork for me. She didn't, and by the time I found out that she hadn't, the state had suspended that program, and I could no longer apply. Last year, the nurse told me I was approved for two years, and wouldn't need a new evaluation until 2013. I've had two people come out since then, both for evaluations.
Today's nurse went out of her way to tell me that Mass Health is dramatically cutting back on hours, to the point where she's had to tell clients that their hours were cut back because "risk of falls is anticipatory language, and Mass Health doesn't pay for what we might anticipate our problems to be, but what they actually are." Gee, there's great budget reducing deduction, state agency --> cut preemptive funds to protect people from falling, client falls and is badly injured, now needs MORE services then ever (so you spend even more money than you would have originally)! Ignoring the fact that the client is a real person, who will have additional pain and suffering because of the fall (and I'm only ignoring it because I know they are), what kind of logistical financial sense does that equation make?? True facts: I hated math in school, but I still managed to pass, so I know that it makes zero actual sense!
Anyways, she gave me the spiel about cutbacks and then said "So I hope I don't have to make any changes in your eval, because the only clients that I've had them deny are ones that I've asked for adjustments on. So I try not to rock the boat." She said that before we had started going over what help I need and when I need it, she said it at the bottom of every page, and she said it again as I was signing my (blank) form, so what are the chances that I told her that I felt like I needed more hours? Even though I really do need more hours, and need adjustments on the aspects of daily living portion that are still wrong from five years ago?
I don't think you even have had to pass math to guess, but the chances of that are also zero!
There's so much talk in the air lately about benefit scroungers & welfare layabouts - people who are scamming the system and cheating 'the tax payers' out of their hard earned money. There's a lot of talk about cutbacks to essential social services and financial supportive programs. You can't read any sort of reliable news source that isn't telling you about how the social safety net is being dismantled in Country A or Country B.
And if you read through any of the blogs from last week's brilliant Blogging Against Disabilism Day, then you probably saw how much these cutbacks are affecting the lives of very real people. Here's just one more subtle example: I wasn't denied any services by the program I'm in, or by Mass Health, or even by the agency that administers my participation in the program. But I was told, again and again, that to ask for the amount of help I truly need could leave me without the help I already have. That to ask for more is to put it all at risk, and that was enough. And it wasn't the nurse's fault - she was honestly trying to be helpful, because she knew I needed services and didn't want to see me without anything. But when the climate is "our state is cutting money where ever it can find it, and if that means a person with disabilities falls (or goes without meals or showers) because of it, oh well: unintended byproduct of cost-cutting Necessary Measures!", then people with disabilities know that they have to be extra cautious, to settle for what they have, even when it's not good enough.
But no, those commenters who were sure that there "isn't STILL discrimination against the disabled": I'm sure you're right. I'm just being overly sensitive.
We filled out the paper work, with our best case scenarios, and nobody was surprised when the decision came back from Mass Health approved for significantly less hours than were necessary. Significantly less hours than a qualified nurse and my own doctor considered necessary, I might add. But I took what I could get, because, especially at that point, any financial help was better than the nothing I was getting. The kicker, in regards to my hours, is that I was approved for 30 minutes of "medical related" travel time A WEEK.
30 minutes of medical related travel time happens at least 3 times a week, and that doesn't even include the actual appointments.
At another evaluation, the nurse told me that I qualified for an additional stipend, because of a new part of the program, and that she would put in the paperwork for me. She didn't, and by the time I found out that she hadn't, the state had suspended that program, and I could no longer apply. Last year, the nurse told me I was approved for two years, and wouldn't need a new evaluation until 2013. I've had two people come out since then, both for evaluations.
Today's nurse went out of her way to tell me that Mass Health is dramatically cutting back on hours, to the point where she's had to tell clients that their hours were cut back because "risk of falls is anticipatory language, and Mass Health doesn't pay for what we might anticipate our problems to be, but what they actually are." Gee, there's great budget reducing deduction, state agency --> cut preemptive funds to protect people from falling, client falls and is badly injured, now needs MORE services then ever (so you spend even more money than you would have originally)! Ignoring the fact that the client is a real person, who will have additional pain and suffering because of the fall (and I'm only ignoring it because I know they are), what kind of logistical financial sense does that equation make?? True facts: I hated math in school, but I still managed to pass, so I know that it makes zero actual sense!
Anyways, she gave me the spiel about cutbacks and then said "So I hope I don't have to make any changes in your eval, because the only clients that I've had them deny are ones that I've asked for adjustments on. So I try not to rock the boat." She said that before we had started going over what help I need and when I need it, she said it at the bottom of every page, and she said it again as I was signing my (blank) form, so what are the chances that I told her that I felt like I needed more hours? Even though I really do need more hours, and need adjustments on the aspects of daily living portion that are still wrong from five years ago?
I don't think you even have had to pass math to guess, but the chances of that are also zero!
There's so much talk in the air lately about benefit scroungers & welfare layabouts - people who are scamming the system and cheating 'the tax payers' out of their hard earned money. There's a lot of talk about cutbacks to essential social services and financial supportive programs. You can't read any sort of reliable news source that isn't telling you about how the social safety net is being dismantled in Country A or Country B.
And if you read through any of the blogs from last week's brilliant Blogging Against Disabilism Day, then you probably saw how much these cutbacks are affecting the lives of very real people. Here's just one more subtle example: I wasn't denied any services by the program I'm in, or by Mass Health, or even by the agency that administers my participation in the program. But I was told, again and again, that to ask for the amount of help I truly need could leave me without the help I already have. That to ask for more is to put it all at risk, and that was enough. And it wasn't the nurse's fault - she was honestly trying to be helpful, because she knew I needed services and didn't want to see me without anything. But when the climate is "our state is cutting money where ever it can find it, and if that means a person with disabilities falls (or goes without meals or showers) because of it, oh well: unintended byproduct of cost-cutting Necessary Measures!", then people with disabilities know that they have to be extra cautious, to settle for what they have, even when it's not good enough.
But no, those commenters who were sure that there "isn't STILL discrimination against the disabled": I'm sure you're right. I'm just being overly sensitive.
Tuesday, May 01, 2012
My Years of Magical Thinking...
And why I'm calling BS.
There's this idea out there - in the everyday world, in pop culture, in families the world over and sadly still in some medical circles - that you can believe yourself into being well (or that you somehow believed yourself into being sick in the first place). That all that it takes is wanting to be better badly enough, purely enough, consciously enough, something enough for it to somehow "manifest" in your life.
The idea takes numerous forms - there's the curative power of prayer; the school of 'get up off your ass & do something about it, you whiners' (aka the bootstrappers); the 'but you've got nothing to be sad about/tired from/allergic to' zealots; a million symptom-specific diets; holy water & snake oil & pills made from coral only found in the shadow of the wreck of the Lusitania; and the ever adorable 'Oh we all get headaches/sad/tired sometimes, but you don't see me sitting around complaining about it' crowd. Those are just a few off the top of my head - there's probably a thousand more we could come up with together (Feel free to leave your gravest offenders in the comments!) but they all have one thing in common - they take a person's illness or disability and make it not a medical condition, or a failure of society to accommodate the needs of that person - but a personal failing on the part of the individual. They all nullify our personal (individual & cumulative) issues and needs and turn them into something we're doing wrong or not well enough. And I say bullshit.
This sort of blame, grounded in magical thinking, shows itself in everything from the rantings of politicians about benefit scroungers, to the old woman in the parking lot who yells at me for being too young to need a handicapped parking spot, to my super-crunchy sister explaining to me that all illness is rooted in "past personal traumas" and "touch therapy" might be the answer for me. It shows in personal stories of achievement - converts of former patients who swear by whatever method happened to work for them, and preach about it now as if it were the One True Word. I'm happy for them, truly, but can't get over the amount of gall it would take to assume that what worked for you and your illness must, of course, then work for me (or the millions of others of us who share a disease). Just because you started running marathons on a diet consisting solely of cough medicine and peach pits, does not mean it would work as well (or at all) for me. Thanks for telling me about it, now carry on with your business.
But it's never that simple - the fact that there is a peach pit & cough medicine cure out there, and I am not attempting it: that's unacceptable in society's eyes. I should be doing everything I can to fight against my illnesses, even if it's contrary to common sense, defies the constraints of financial, emotional or physical realities, &/or is the least likely antidote to whatever ails me & in fact, would make my problem a million times worse. Society gets to pick if I'm trying hard enough, and {Spoiler Alert} I never will be!!
-----
I was 15 when I first got sick, nowhere near done figuring out what kind of person I wanted to be when I grew up, and everything I thought I knew about my world & who I was just... ended. I wasn't smart anymore, because I would sleep through my classes, and the time I should be doing homework, and miss weeks of school at a time. I wasn't a dancer anymore: after months and months of missing them, on days I could drag myself there, I would go to the one dance class I thought I could manage, do a half-ass job and then curl up in the corner on the gymnastics mats to go to sleep. I'd gone from teaching three days a week & taking my own classes to barely limping through the basic warm-up at the barre.
But no one told me to stop: My doctors said I was very sick, but that I "shouldn't give in", that I should "Do what (I) can." To a fifteen-year-old (well, to fifteen-year-old me, anyways) that was like a challenge - "go until you can't go anymore." And that's exactly what I did: I worked so hard at school (even when I was homeschooling) that when summer came around, I was bedridden. I still can't watch the show tape from that last year, when I lost out on my first solo and instead hobbled through the one number in the recital I had to nearly kill myself dancing through. Afterwards, laying in the wings, waiting for my heartbeat to slow and my vision to come back (looking back it's likely my POTS/NMH issues were a problem even then), I thought to myself: "Well, was that worth dying for?"
But I didn't stop pushing, because everybody told me I shouldn't. My family constantly told me that I just had to keep trying, my teachers said that "surely, someone as smart as you can figure out how to beat this," my friends nagged that I'd been sick long enough, already, hadn't I? I know that they were trying to be encouraging, but it was the only message I heard, that I had to battle, until I won. That it would be like giving up, to say that I might have to live with this illness instead of fighting against it. The doctors made sure I knew that if I started to "act like I was sick" I would only get worse: "Don't give in," they would tell me, "keep fighting." So I did. For (as it turned out, way too many) years.
My parents, armed with the same doctor's advice - "don't let her give into it, because then she could be sick forever"- were as ill-equipped to deal with our new situation as I was. Never mind that I was sick right then and that might have been important to deal with. Nope, the now was always about the fight, and so we spent a good portion of what was left of my teenage years fighting against the CFS, and often against each other, when it seemed to them that I was "giving in" to it: When it got to the point that I couldn't eat, and I lost about 35 pounds like it was water weight, I can remember having screaming matches with my dad at the table where he would say such helpful things as "JUST PUT IT IN YOUR MOUTH AND EAT IT FOR CHRIST'S SAKE!!!" and I just... couldn't. It tasted like ash - everything did - and burned all the way down, where it would sit, heavy as winter boots until my belly revolted and back up it came. I would cry and he would yell that I was making myself sicker, with the crying. Or being in the car on the receiving end of glares from my siblings, when they all wanted to go someplace and I was too exhausted to move, let alone get out of the car again, and my sister closing the door, rolling her eyes and saying "Well, I guess, if you're going to be that "sick", we'll all just stop having fun now" as we drove home.
We didn't know, is my point: Nobody gave me - or them - the skills. Maybe, with something like an aggressive cancer, the doctors would've been right on target - 'fight back, till its gone: take no prisoners, grant no quarter!' But I had something nobody knew what to with, a chronic illness with no known treatment, cause, cure. And so their advice was way off the mark. It was like I was diagnosed with CFS (and later Fibro & POTS & now the diabetes, not to mention the 14 other things in between and the one big question mark they're all still looking for as the Holy Grail) and instead of a treatment plan, with meds to take and dos and don'ts to follow, all they told me is "You have it, but pretend you don't, as much as is possible." And that was some damn bad advice.
It was wrong and dangerous, and it could've been - on more than one occasion for me- deadly. (Turns out ignoring pneumonia is potentially a bad thing: who knew?)
That's why this fallacy of magical thinking gets me so upset - because it took a fifteen-year-old girl who could have learned the skills she needed to manage a chronic illness and continue to live a full (if different) life, and left her helpless, terrified and vulnerable. And blaming herself.
-----
So, I didn't have the skills, or the treatment plan, or the answers, but everybody kept telling me that they were out there: keep trying till you find The Cure. So I tried all the crazy shit that you think you are not desperate enough to go near: pills with high price tags and exorbitant claims; cleansings and energy work and fasting rituals; diets and doing an hour of PT every Friday that takes you until Thursday to recover from; pushing yourself way beyond what your body is actually capable of. The doctors might roll their eyes at my latest endeavor, or be all for it -"couldn't hurt" I had more than one of them tell me, even though they were 100% wrong- but they didn't have anything better to offer, so it was up to me to follow the magical thinking train as far as it would take me.
It goes pretty far, you know: you work so hard at convincing yourself that you're getting better, while your hospitalization rate soars and your immune system falters. You can laugh with the doctors about that "last bit of voodoo you tried" all the while you're planning how you'll scrape up the money for your next. You can fuel that train with all of the self-hatred you accumulate when people tell you that you're just being lazy, or that you're faking, or that if you really, really tried, you could do it. (That's a never ending, renewable resource right there: look, I fixed the economy!)
But in the end, it didn't matter how often I thought maybe this pill was helping or that I just had to make it through the next 14 sessions and the acupuncture would clear everything up. In the end, I was sicker than when I started, discouraged at myself for failing and certain that if I just tried hard enough, like everybody said, I could beat this thing.
---
There's a lot of maybes about my illnesses - maybe if I'd never gotten the mono, it wouldn't have switched on whatever self destruct sequence is probably hiding in my genetic code, or maybe if I'd gone to see a specialist right away s/he would've recognized the problem before it spiraled into today's current chaos. Maybe X or maybe Y. I don't know about any of that.
But there's one certainty about the whole mess: It could've been better. My experience did not have to be as hellish as it often was. It didn't have to be as isolating, and full of blame as it was: Because everybody - from my teachers to my sisters to my grandmother who couldn't understand why I'd cry when she suggested I go to a faith healer - blamed me at some point. I'm not saying it would've been a land of rainbows and puppies - hell I don't buy into magical thinking now, and my life is certainly pretty puppy-less - but it could've been better than what it was.
And that's where society and medicine and the world with all of it's "The power of the Secret of thinking with your wholeheart and wanting it with your entire being" bullshit failed 15-year-old me, and 32-year-old me, and the 3-year-old with learning disabilities that I used to tutor, and my sister who has depression, and basically every disability activist I've ever met; and every person with a disability, and their families and my parents, and, well, the whole world, honestly. It isn't enough to wish it away - that wishes us away, too. It doesn't honor who we are to be told that we're just not doing enough to be well, or that we worried ourselves into being sick, or that if I looked on the bright side more often, I would somehow no longer be allergic to all of the contents of the natural world. It's bullshit is what it is, and I'm going to call you on it, now that I know it for lies.
----
It wasn't until I got to college and started meeting other people with disabilities and allies and advocates and started paying attention to the people who said: "Listen, it might get better: You never know, you might wake up tomorrow and be healed and awesome. But there are ways to make today easier to live through, to be awesome with a chronic illness, and one of them is NOT FIGHTING quite so much. It's accepting that you're sick. You're a sick person, a disabled person, and ... you know what? That's fine, too. You're not lesser, or weaker, or anything negative because you're sick. You're just sick. It's a part of who you are, and you need to deal with it, because this fighting with it is just making everything worse."
I cringe to remember my Freshman self, saying to a professor that I was "Not disabled: just temporarily out of service." She was polite enough not to say anything, but I want to go back and punch myself in the face for that flippant nonsense: I really thought that not claiming part of myself would be beneficial? For who? Was it supposed to be funny? It seems absurd and sad now - I don't even know. I do know that when I finally made myself face the fact that all of this magical thinking was getting me nowhere, was in fact hurting more than it was helping, it was devastating to me: Not being able to cure myself, I must instead of course be a complete failure. (It was this all or nothing attitude that really helped my depression stay around as long as it did, unfortunately.) There was no middle ground for me, and realizing that people were wrong and I wasn't going to be able to think myself better? That all the pushing my body through shit was actually making things worse? It was like stepping out into empty air yet again - I had no idea what could be next for me, if everything I knew how to do - if fighting & believing that it could all just magically go away one day - was wrong.
But once I got past that, once I accepted that truth, I learned so many ways to make my life better, to make it more meaningful, to work towards not just marking time until I got better, but living through that time, because this is my life now. It's a life with chronic illness, and yeah, I'd rather it wasn't, but wishing doesn't make it so, so get to living & dealing with it, because it's a part of my life, but it's not all that I am.
And that's a truth I worked long and hard to find - and it still takes some work to remember that it applies to me - that there's societal constructs at work behind my feeling of just not doing enough to fix myself, and that I'm not really a lazy, layabout who'd rather play on the Internet all day then get a real job. That 16 doctors appointments in the space of three weeks is more than enough, even if they're not giving me the answers I need. That eating french toast today instead of a salad like every other day, and is not the reason I'll obviously never get better. To remember that there are reasonable levels of self-care and coping strategies, and then there's just plain false hope.
And the idea that I might have gotten to that point so much sooner if somebody had been around to say to me "Magical thinking isn't going to cut it. There may a cure out there, but it's probably not going to be found in this guy's car trunk." (True story) "And as far as I can tell, there's nobody around to provide you with a deus ex machina, so get to living with this instead of waiting for it to get gone."
But that's why I talk about magical cures when they pop up in what I'm reading or watching. It's why I get into arguments with the people in my life who dole out advice on seaweed pills along with our shared breakfast. And it's why I'll keep talking about it here. Because somewhere there's a fifteen-year-old girl, with an illness she did nothing to cause and she can do nothing to get rid of. And she deserves to hear the truth. Not the fluffy, Secret-based philosophy of pseudo-cures and self-blame. But the facts: That chronic illness & disability are just another part of life, and you can deal with them, and treat them, and live with them, and even thrive with them - to the best of your ability - but you can't, not ever, think your way out of them.
*Welcome to all the Blogging Against Disability Day readers - I know there's a million great posts to be read, so I really appreciate it if you made it all the way through that! If you're one of my regular readers, please head over to the Goldfish's place, and read some of the other excellent BADD posts: I promise, you'll learn a lot.*
There's this idea out there - in the everyday world, in pop culture, in families the world over and sadly still in some medical circles - that you can believe yourself into being well (or that you somehow believed yourself into being sick in the first place). That all that it takes is wanting to be better badly enough, purely enough, consciously enough, something enough for it to somehow "manifest" in your life.
The idea takes numerous forms - there's the curative power of prayer; the school of 'get up off your ass & do something about it, you whiners' (aka the bootstrappers); the 'but you've got nothing to be sad about/tired from/allergic to' zealots; a million symptom-specific diets; holy water & snake oil & pills made from coral only found in the shadow of the wreck of the Lusitania; and the ever adorable 'Oh we all get headaches/sad/tired sometimes, but you don't see me sitting around complaining about it' crowd. Those are just a few off the top of my head - there's probably a thousand more we could come up with together (Feel free to leave your gravest offenders in the comments!) but they all have one thing in common - they take a person's illness or disability and make it not a medical condition, or a failure of society to accommodate the needs of that person - but a personal failing on the part of the individual. They all nullify our personal (individual & cumulative) issues and needs and turn them into something we're doing wrong or not well enough. And I say bullshit.
This sort of blame, grounded in magical thinking, shows itself in everything from the rantings of politicians about benefit scroungers, to the old woman in the parking lot who yells at me for being too young to need a handicapped parking spot, to my super-crunchy sister explaining to me that all illness is rooted in "past personal traumas" and "touch therapy" might be the answer for me. It shows in personal stories of achievement - converts of former patients who swear by whatever method happened to work for them, and preach about it now as if it were the One True Word. I'm happy for them, truly, but can't get over the amount of gall it would take to assume that what worked for you and your illness must, of course, then work for me (or the millions of others of us who share a disease). Just because you started running marathons on a diet consisting solely of cough medicine and peach pits, does not mean it would work as well (or at all) for me. Thanks for telling me about it, now carry on with your business.
But it's never that simple - the fact that there is a peach pit & cough medicine cure out there, and I am not attempting it: that's unacceptable in society's eyes. I should be doing everything I can to fight against my illnesses, even if it's contrary to common sense, defies the constraints of financial, emotional or physical realities, &/or is the least likely antidote to whatever ails me & in fact, would make my problem a million times worse. Society gets to pick if I'm trying hard enough, and {Spoiler Alert} I never will be!!
-----
I was 15 when I first got sick, nowhere near done figuring out what kind of person I wanted to be when I grew up, and everything I thought I knew about my world & who I was just... ended. I wasn't smart anymore, because I would sleep through my classes, and the time I should be doing homework, and miss weeks of school at a time. I wasn't a dancer anymore: after months and months of missing them, on days I could drag myself there, I would go to the one dance class I thought I could manage, do a half-ass job and then curl up in the corner on the gymnastics mats to go to sleep. I'd gone from teaching three days a week & taking my own classes to barely limping through the basic warm-up at the barre.
But no one told me to stop: My doctors said I was very sick, but that I "shouldn't give in", that I should "Do what (I) can." To a fifteen-year-old (well, to fifteen-year-old me, anyways) that was like a challenge - "go until you can't go anymore." And that's exactly what I did: I worked so hard at school (even when I was homeschooling) that when summer came around, I was bedridden. I still can't watch the show tape from that last year, when I lost out on my first solo and instead hobbled through the one number in the recital I had to nearly kill myself dancing through. Afterwards, laying in the wings, waiting for my heartbeat to slow and my vision to come back (looking back it's likely my POTS/NMH issues were a problem even then), I thought to myself: "Well, was that worth dying for?"
But I didn't stop pushing, because everybody told me I shouldn't. My family constantly told me that I just had to keep trying, my teachers said that "surely, someone as smart as you can figure out how to beat this," my friends nagged that I'd been sick long enough, already, hadn't I? I know that they were trying to be encouraging, but it was the only message I heard, that I had to battle, until I won. That it would be like giving up, to say that I might have to live with this illness instead of fighting against it. The doctors made sure I knew that if I started to "act like I was sick" I would only get worse: "Don't give in," they would tell me, "keep fighting." So I did. For (as it turned out, way too many) years.
My parents, armed with the same doctor's advice - "don't let her give into it, because then she could be sick forever"- were as ill-equipped to deal with our new situation as I was. Never mind that I was sick right then and that might have been important to deal with. Nope, the now was always about the fight, and so we spent a good portion of what was left of my teenage years fighting against the CFS, and often against each other, when it seemed to them that I was "giving in" to it: When it got to the point that I couldn't eat, and I lost about 35 pounds like it was water weight, I can remember having screaming matches with my dad at the table where he would say such helpful things as "JUST PUT IT IN YOUR MOUTH AND EAT IT FOR CHRIST'S SAKE!!!" and I just... couldn't. It tasted like ash - everything did - and burned all the way down, where it would sit, heavy as winter boots until my belly revolted and back up it came. I would cry and he would yell that I was making myself sicker, with the crying. Or being in the car on the receiving end of glares from my siblings, when they all wanted to go someplace and I was too exhausted to move, let alone get out of the car again, and my sister closing the door, rolling her eyes and saying "Well, I guess, if you're going to be that "sick", we'll all just stop having fun now" as we drove home.
We didn't know, is my point: Nobody gave me - or them - the skills. Maybe, with something like an aggressive cancer, the doctors would've been right on target - 'fight back, till its gone: take no prisoners, grant no quarter!' But I had something nobody knew what to with, a chronic illness with no known treatment, cause, cure. And so their advice was way off the mark. It was like I was diagnosed with CFS (and later Fibro & POTS & now the diabetes, not to mention the 14 other things in between and the one big question mark they're all still looking for as the Holy Grail) and instead of a treatment plan, with meds to take and dos and don'ts to follow, all they told me is "You have it, but pretend you don't, as much as is possible." And that was some damn bad advice.
It was wrong and dangerous, and it could've been - on more than one occasion for me- deadly. (Turns out ignoring pneumonia is potentially a bad thing: who knew?)
That's why this fallacy of magical thinking gets me so upset - because it took a fifteen-year-old girl who could have learned the skills she needed to manage a chronic illness and continue to live a full (if different) life, and left her helpless, terrified and vulnerable. And blaming herself.
-----
So, I didn't have the skills, or the treatment plan, or the answers, but everybody kept telling me that they were out there: keep trying till you find The Cure. So I tried all the crazy shit that you think you are not desperate enough to go near: pills with high price tags and exorbitant claims; cleansings and energy work and fasting rituals; diets and doing an hour of PT every Friday that takes you until Thursday to recover from; pushing yourself way beyond what your body is actually capable of. The doctors might roll their eyes at my latest endeavor, or be all for it -"couldn't hurt" I had more than one of them tell me, even though they were 100% wrong- but they didn't have anything better to offer, so it was up to me to follow the magical thinking train as far as it would take me.
It goes pretty far, you know: you work so hard at convincing yourself that you're getting better, while your hospitalization rate soars and your immune system falters. You can laugh with the doctors about that "last bit of voodoo you tried" all the while you're planning how you'll scrape up the money for your next. You can fuel that train with all of the self-hatred you accumulate when people tell you that you're just being lazy, or that you're faking, or that if you really, really tried, you could do it. (That's a never ending, renewable resource right there: look, I fixed the economy!)
But in the end, it didn't matter how often I thought maybe this pill was helping or that I just had to make it through the next 14 sessions and the acupuncture would clear everything up. In the end, I was sicker than when I started, discouraged at myself for failing and certain that if I just tried hard enough, like everybody said, I could beat this thing.
---
There's a lot of maybes about my illnesses - maybe if I'd never gotten the mono, it wouldn't have switched on whatever self destruct sequence is probably hiding in my genetic code, or maybe if I'd gone to see a specialist right away s/he would've recognized the problem before it spiraled into today's current chaos. Maybe X or maybe Y. I don't know about any of that.
But there's one certainty about the whole mess: It could've been better. My experience did not have to be as hellish as it often was. It didn't have to be as isolating, and full of blame as it was: Because everybody - from my teachers to my sisters to my grandmother who couldn't understand why I'd cry when she suggested I go to a faith healer - blamed me at some point. I'm not saying it would've been a land of rainbows and puppies - hell I don't buy into magical thinking now, and my life is certainly pretty puppy-less - but it could've been better than what it was.
And that's where society and medicine and the world with all of it's "The power of the Secret of thinking with your wholeheart and wanting it with your entire being" bullshit failed 15-year-old me, and 32-year-old me, and the 3-year-old with learning disabilities that I used to tutor, and my sister who has depression, and basically every disability activist I've ever met; and every person with a disability, and their families and my parents, and, well, the whole world, honestly. It isn't enough to wish it away - that wishes us away, too. It doesn't honor who we are to be told that we're just not doing enough to be well, or that we worried ourselves into being sick, or that if I looked on the bright side more often, I would somehow no longer be allergic to all of the contents of the natural world. It's bullshit is what it is, and I'm going to call you on it, now that I know it for lies.
----
It wasn't until I got to college and started meeting other people with disabilities and allies and advocates and started paying attention to the people who said: "Listen, it might get better: You never know, you might wake up tomorrow and be healed and awesome. But there are ways to make today easier to live through, to be awesome with a chronic illness, and one of them is NOT FIGHTING quite so much. It's accepting that you're sick. You're a sick person, a disabled person, and ... you know what? That's fine, too. You're not lesser, or weaker, or anything negative because you're sick. You're just sick. It's a part of who you are, and you need to deal with it, because this fighting with it is just making everything worse."
I cringe to remember my Freshman self, saying to a professor that I was "Not disabled: just temporarily out of service." She was polite enough not to say anything, but I want to go back and punch myself in the face for that flippant nonsense: I really thought that not claiming part of myself would be beneficial? For who? Was it supposed to be funny? It seems absurd and sad now - I don't even know. I do know that when I finally made myself face the fact that all of this magical thinking was getting me nowhere, was in fact hurting more than it was helping, it was devastating to me: Not being able to cure myself, I must instead of course be a complete failure. (It was this all or nothing attitude that really helped my depression stay around as long as it did, unfortunately.) There was no middle ground for me, and realizing that people were wrong and I wasn't going to be able to think myself better? That all the pushing my body through shit was actually making things worse? It was like stepping out into empty air yet again - I had no idea what could be next for me, if everything I knew how to do - if fighting & believing that it could all just magically go away one day - was wrong.
But once I got past that, once I accepted that truth, I learned so many ways to make my life better, to make it more meaningful, to work towards not just marking time until I got better, but living through that time, because this is my life now. It's a life with chronic illness, and yeah, I'd rather it wasn't, but wishing doesn't make it so, so get to living & dealing with it, because it's a part of my life, but it's not all that I am.
And that's a truth I worked long and hard to find - and it still takes some work to remember that it applies to me - that there's societal constructs at work behind my feeling of just not doing enough to fix myself, and that I'm not really a lazy, layabout who'd rather play on the Internet all day then get a real job. That 16 doctors appointments in the space of three weeks is more than enough, even if they're not giving me the answers I need. That eating french toast today instead of a salad like every other day, and is not the reason I'll obviously never get better. To remember that there are reasonable levels of self-care and coping strategies, and then there's just plain false hope.
And the idea that I might have gotten to that point so much sooner if somebody had been around to say to me "Magical thinking isn't going to cut it. There may a cure out there, but it's probably not going to be found in this guy's car trunk." (True story) "And as far as I can tell, there's nobody around to provide you with a deus ex machina, so get to living with this instead of waiting for it to get gone."
But that's why I talk about magical cures when they pop up in what I'm reading or watching. It's why I get into arguments with the people in my life who dole out advice on seaweed pills along with our shared breakfast. And it's why I'll keep talking about it here. Because somewhere there's a fifteen-year-old girl, with an illness she did nothing to cause and she can do nothing to get rid of. And she deserves to hear the truth. Not the fluffy, Secret-based philosophy of pseudo-cures and self-blame. But the facts: That chronic illness & disability are just another part of life, and you can deal with them, and treat them, and live with them, and even thrive with them - to the best of your ability - but you can't, not ever, think your way out of them.
*Welcome to all the Blogging Against Disability Day readers - I know there's a million great posts to be read, so I really appreciate it if you made it all the way through that! If you're one of my regular readers, please head over to the Goldfish's place, and read some of the other excellent BADD posts: I promise, you'll learn a lot.*
Tuesday, April 24, 2012
"No pas creme freche"
Henri and I are feeling quite simpatico right now - I actually had a pretty good weekend, but ended up with either a MAJOR allergy attack or a not so horrible but still annoying cold, or (more likely) a combination of the two & it has not been awesome for me (hives! scratching my eyes out! a nose that is all drippy and sneezy! a throat that is scratchier than an emery board!). I feel like a waste of space, with the lowest amount of possible energy a human being can have and still be said to be 'existing': I am frustrated at yet another set back, but also I kind of don't care about anything either, because that would take too much effort. I would have said I was behaving slug-like, but then I saw this video, and I knew it could explain it better than I could. Here's hoping tomorrow is not an Henri kind of day, for any of us. Now, somebody help me dig up some spoons.
Thursday, April 19, 2012
Current carb count: 53; Goal for the day: 170
This whole counting carbohydrate things that I'm doing for the (potential/maybe/i don't even know anymore) diabetes is stressful and overwhelming: Even though I make the computer do most of the actual math work (thank you, SparkPeople!), trying to figure out the balance of carbs v protein v fats before you can put a morsel of food in your mouth is mentally exhausting & a lot more challenging than I would have guessed. I never realized how privileged I was just to see food or want food, and then eat that food - I mean I've got my own food allergies and those have caused me issues here and there, but this whole not being able to eat an entire class of food thing (at least not like I used to anyways) is humbling: It's a whole 'nother level, that's for sure.
"Oh, you mean it isn't this easy for everybody? And I'm making assumptions about people subconsciously based on what they eat/don't eat? And more judging based on things I have no clue about? Awesome: let's try to fix that, shall we?" It's funny, because whenever I think I've unpacked my whole 'privilege knapsack', there's always something left at the bottom that needs to be dealt with.
Anyways, in a twist that only seems likely in this household, my dad was also just diagnosed with diabetes - as in he went to the doctor last week for a random physical and his blood glucose was up over three hundred (this is not a good number, for those of you who don't have to worry about this stuff - you generally, for a fasting blood glucose, want the # to be under 100). She (another doctor I really can't stand even though I've never met her) immediately put him on meds, and told him he had diabetes. That's it: nothing about his diet -oh no wait: she did say "Don't eat bananas anymore", which makes no freaking sense to me at all, but whatever - nothing about a glucose monitor or a diabetes educator: just take this pill, eat better, and come back and see me in a week. It - quite naturally, - freaked him the hell out.
But here's the thing about my dad - when it comes to his health, he's easily freaked out. So her giving him the news that way was not in anybody's best interest. He's definitely not a hypochondriac, but he has certain hypochondriacal tendencies: Everything he has is going to kill him. Maybe immediately. It's not the regular flu, it's the swine flu, and even if everybody else in the house has it and is vomiting and shivering with fever, HIS fever is the worst ever, and he threw up more than you. He's one of those people who thinks they are good at being sick - I've actually heard him say "I'm a great patient" and I had to roll my chair into the other room to laugh - but is really kind of pathetic and weird instead. So, he found out about the diabetes, freaked out, and then sat morosely in his chair for hours, until my sister asked him what was up, and then we spent the next couple of days trying to explain that it wasn't a death sentence.
Since I'm kind of on this path myself, I tried to explain to him that he needed to see a nutritionist and a diabetes educator, that his doctor should have written him a prescription for a glucose monitor, and that he still had a lot of work to do, but starting the meds didn't mean he'd never get off of them.
And also, just as an aside here: so what if he never does? Is he worried about getting off of his blood pressure meds or the stuff he occasionally takes for his RA? No. But there's something about diabetes (type 2 anyways) that I'm just learning about - there's a stigma I hadn't been all that tuned into: the whole "you could have prevented this, and so now I'm allowed to look down on you" vibe that comes along with the meds and the testing and the diagnosis. The feeling that you brought this on yourself, by being a big fat slob (which he is not). And it's not just other people: There's really such an internal bias about it - at least for me: All the rest of my diseases came from who knows where, and Maude only knows how. But the diabetes? That feels like I failed at maintaining my body, that it was my fault that this could be happening - if I wasn't so fat (never mind the steroids and the not being able to exercise and the no spoons for finding good food) this wouldn't be happening. Which A) is not true because skinny people get diabetes too, and B)I'm a pretty average eater, nutritionally - I probably eat 'better' than average, because I love veggies and fruits, and C) is ridiculous because I can not control my pancreas any more than you can control yours. But still, it's there - there's a sense of blame and responsibility about diabetes that I just don't have about my other illnesses - with them I know I didn't do anything that 'caused' them, so I'm not ashamed of having them (although I do feel guilt about not taking care of my body when it needed me to, and making things worse, but that's a whole 'nother story).
I'm not on any diabetes meds, yet, at any rate, so I couldn't tell him that they weren't that bad, but he's the type of guy who reads all the side effects on that sheet they give you, and assumes he's going to be the one in 45 million who get purple spots or heart palpitations or death. He has no history of drug intolerances, which I pointed out, but that didn't convince him either. We looked it up, and saw that it's a super common drug for diabetes, and that side effects were pretty rare, mathematically, which sort of helped, I guess. As a last resort, I tried to tell him that I had - on more than one occasion - been injected with radioactive formulas, other people's white filtered white blood cells, and a known poison, so probably taking a really common drug wouldn't be his downfall. I don't know if he believed me or not, but he took it anyways. And his blood sugar is much more under control now, which is great.
And we're talking again, after the big blowout, which is also kind of nice, and kind of awkward, because ... well, when someone tells you you are a piece of trash (more than once and in lots of different ways), it's hard to feel kindly towards them again. Especially if you feel they still don't get how hurtful they were, or that they're still not being all-the-way honest. So it's tricky and awkward and hard. Except when it's not: because he's my dad, and because he needs my help, and because I love him anyways. So: awkward, but hopefully, positive.
He's also a little obsessive about things - so if he starts to research something, be prepared to be overwhelmed with 17 daily e-mails about what foods are good for your blood sugar, and which are killers. Since I'm also an information-obsessive, I can understand the need to hoard as much knowledge as possible about what's going on with your body, but I tend to keep it to myself: I have folders and books and links and articles and quotes and studies and whatever about what's going on with me, but I don't bombard people with them. I honestly, barely tell people anything, but if I did, if I sent every little piece of information that I found that is slightly related to my health directly to them at all hours of the day, they would (correctly, IMO) block my e-mail and stop communicating with me all together. The problem is that he is not the best researcher, so most of his e-mails consist of things like "DANGER NEVER EAT THIS FOOD IF YOU HAVE DIABETES!!!" or "Super! Food! Reverses! Diabetes! Immediately!" which, is both annoying (because: obviously false) and frustrating (because later, he wants to talk about all the e-mails, and did you get them, and what did you think???? I think: obviously false!)
So, aside from helping him with the math (and telling him he should switch us over to smart phones so we can have apps that do the math), I had to tell him to cut me out of the loop on some of this stuff: I am so overwhelmed already with trying to figure out how to help myself navigate this whole diabetes thing, and help him navigate it, that the fear mongering or miracle cure e-mails are a distraction that I just don't need.
He got that hurt/pouty look when I told him that, but he's going to have to suck that up, because I've got about all the mental clutter I can handle already, thank you very much.
He also made my mother and Sister J, who have THE WORST DIETS IN THE ENTIRE WORLD, I am seriously not kidding (Mom has been existing on a diet of mostly chocolate covered pretzels and bacon for a few months, where as SisterJ says things like "How was I supposed to know kids aren't allowed to have more than three doughnuts for breakfast?") test their blood glucose number, just to see. He may not have had a pouty face when their numbers were exceptional (both under 100!), but I was pretty damn shocked - it did make me growl a little that someone who eats an entire box of Entemanns Raspberry Danish for breakfast can have such low numbers when I ate salad for breakfast, lunch and dinner yesterday and my numbers are out of control. Jealous grumbles were definitely heard from my corner, even though I was glad I wouldn't have to start helping them do carb-math as well.
So now I've written write straight through lunch time, and I have to go crunch some numbers into making sense and put some food in my face. (Unfortunately for all of us, it won't be Raspberry Danish)
Monday, April 16, 2012
Moar! Writing!
On the plus side, I have spent three hours today writing. On the negative side, I spent most of those three hours writing and rewriting a post that is nowhere near ready to be shown to people, so let's call it a wash. I was going to write that I'm enjoying writing again, but that's a little bit too strong: I'm almost enjoying writing again. The almost is only because I forgot the part where it was work, and working at something, particularly if that something is emptying your insides out onto paper (or computer screen, as the case may be) is not always enjoyable. But that's the only part that isn't - Giving myself a set writing schedule and feeling so! accomplished! when I can check it off my to-do list (even if nothing awesome actually has resulted yet). Shutting things off in order to hear the sound of my own thoughts. Paying more attention to the difference between what I'm thinking and what I'm saying. Knowing that the part of my brain that has things to say isn't as useless as it has been pretending to be - all of these are excellent things, and I've missed them. Now if I could just get it all to make sense to anybody else but me, I might have a shot at sticking with this whole writing thing.
Wednesday, April 11, 2012
guess what?
I stopped writing again. And taking pictures. And talking to people outside of my house. And doing anything just for fun. Not all the way - there was some writing, and some fun, and some pictures, but for the most part? I just stopped.
Which, if you've been here any length of time, you might recognize as a sign of Very Bad Things.
And there were some Very Bad Things -
- My grandmother has been getting worse, then better, then worse, then better again for months now, and a very large part of me wants to shut down what I'm doing here at home (which isn't much, to be honest) and move in over there again. If I thought I would be a real help, I would do it in a second. But right now, it's all just question marks, and 'why is she getting worse?' and 'but now she's better so let's forget about figuring out why she was worse: send her home', and so much nonsense.
- I saw a "pain specialist" at the pain clinic that Zack sent me to and he came in the room, looked at me and my chart and said "I have nothing good to tell you and you will leave here disappointed." Disappointed didn't really cover it, though, because, against all of my self protective instincts, I actually go into these things hoping that they'll be able to help (god forbid!), and I left the appointment wanting to set things on fire - my mother said she couldn't think of a good place for a fire, however, which was also disappointing. He told me nothing new, gave me the 'stay the course' speech, and still, by the end, when the nurse came in to give me the 'you can go now' part of the speech, and she was very sweet and conciliatory, I wanted to burst into tears - she knew that he wasn't going to be able to help me, I knew it, Zack knew it. Doesn't matter, for some reason. Still felt like getting kicked in the face, one more time.
- Things around the house have been... I guess awkward is the best descriptor I can think of. The not drinking is going really well (at least in the house: there is an increase in dinners out of the house, just my parents, and I don't believe those are totally sober, but you have to go with what people tell you until they prove otherwise), but it's still awkward. There are things you can't say, places you can't go. And there's still the belief that an apology is enough, which I am not finding to be true. He has said he's sorry, but ... i don't know how to get across to him that he has things in our relationship that need to be repaired, that require effort on his part. He thinks the not drinking should be effort enough, and I am conflicted about whether it is or not. (It feels like it should be, and also that it shouldn't be: that makes no sense at all to anyone but me, I am sure.)
- There's a distinct lack of children. What with all of the kids being in school (or two hours away), there are only weekends and vacations during which I can be around the little people I love. (Also: note to self: there's really only one 'little' person left, and he's two hours away. The kids I see regularly are going to be 6 and 12 (!) in less than a month.) I love that their growing older - the depth of stuff we can do: book signings and museum trips and dollar store challenges - is ever expanding, but I'm also kind of sad that there's no little bits to tuck in for nap time or sing silly songs with. Only Lil Girl came to decorate eggs this week - her big brother was busy playing hockey. It was the first time he was 'too big' for something like that, and there was a definite twinge in my heart area: I do not know what I will do when it's time to visit Santa and he rolls his eyes and says 'no thanks.'
- There's also a distinct lack of my children, and the reality of that perhaps being a permanent situation is starting to feel overwhelming. I know it is not impossible, and I know there's still some time left for that to happen for me, but ... it's not on the horizon, if that makes sense. I can barely function most of the time, healthwise, and I can't see adding the complications of children into the mix. At least not now, and not now, I'm starting to realize, has been going on for at least ten years. It's starting to get to the point of 'if not now, when?' That's a really hard question to answer, for a girl who's always wanted to be a mom, but can't see how that would happen.
- Then there's assorted what the fuck-ery: my SSI getting screwed up (for the second time since December), and having to deal with all the phone calls that entails; this whole diabetes, math at meals thing, which is like torture because there are so! many! numbers! and I hate numbers; all of the stuff that I'm supposed to be doing in the house that isn't getting done; random infections; other family members' health issues; and on and on and on.
So there's been some stuff, is what I'm saying. But not writing about the stuff gets me into trouble, so I'm re-committing (for the Xth time) to writing here more often. At least once a week, hopefully more. About stuff that matters, not just random gobbledegook. So I shall see you all back here, very soon. Till then, be As Well As Possible.
Which, if you've been here any length of time, you might recognize as a sign of Very Bad Things.
And there were some Very Bad Things -
- My grandmother has been getting worse, then better, then worse, then better again for months now, and a very large part of me wants to shut down what I'm doing here at home (which isn't much, to be honest) and move in over there again. If I thought I would be a real help, I would do it in a second. But right now, it's all just question marks, and 'why is she getting worse?' and 'but now she's better so let's forget about figuring out why she was worse: send her home', and so much nonsense.
- I saw a "pain specialist" at the pain clinic that Zack sent me to and he came in the room, looked at me and my chart and said "I have nothing good to tell you and you will leave here disappointed." Disappointed didn't really cover it, though, because, against all of my self protective instincts, I actually go into these things hoping that they'll be able to help (god forbid!), and I left the appointment wanting to set things on fire - my mother said she couldn't think of a good place for a fire, however, which was also disappointing. He told me nothing new, gave me the 'stay the course' speech, and still, by the end, when the nurse came in to give me the 'you can go now' part of the speech, and she was very sweet and conciliatory, I wanted to burst into tears - she knew that he wasn't going to be able to help me, I knew it, Zack knew it. Doesn't matter, for some reason. Still felt like getting kicked in the face, one more time.
- Things around the house have been... I guess awkward is the best descriptor I can think of. The not drinking is going really well (at least in the house: there is an increase in dinners out of the house, just my parents, and I don't believe those are totally sober, but you have to go with what people tell you until they prove otherwise), but it's still awkward. There are things you can't say, places you can't go. And there's still the belief that an apology is enough, which I am not finding to be true. He has said he's sorry, but ... i don't know how to get across to him that he has things in our relationship that need to be repaired, that require effort on his part. He thinks the not drinking should be effort enough, and I am conflicted about whether it is or not. (It feels like it should be, and also that it shouldn't be: that makes no sense at all to anyone but me, I am sure.)
- There's a distinct lack of children. What with all of the kids being in school (or two hours away), there are only weekends and vacations during which I can be around the little people I love. (Also: note to self: there's really only one 'little' person left, and he's two hours away. The kids I see regularly are going to be 6 and 12 (!) in less than a month.) I love that their growing older - the depth of stuff we can do: book signings and museum trips and dollar store challenges - is ever expanding, but I'm also kind of sad that there's no little bits to tuck in for nap time or sing silly songs with. Only Lil Girl came to decorate eggs this week - her big brother was busy playing hockey. It was the first time he was 'too big' for something like that, and there was a definite twinge in my heart area: I do not know what I will do when it's time to visit Santa and he rolls his eyes and says 'no thanks.'
- There's also a distinct lack of my children, and the reality of that perhaps being a permanent situation is starting to feel overwhelming. I know it is not impossible, and I know there's still some time left for that to happen for me, but ... it's not on the horizon, if that makes sense. I can barely function most of the time, healthwise, and I can't see adding the complications of children into the mix. At least not now, and not now, I'm starting to realize, has been going on for at least ten years. It's starting to get to the point of 'if not now, when?' That's a really hard question to answer, for a girl who's always wanted to be a mom, but can't see how that would happen.
- Then there's assorted what the fuck-ery: my SSI getting screwed up (for the second time since December), and having to deal with all the phone calls that entails; this whole diabetes, math at meals thing, which is like torture because there are so! many! numbers! and I hate numbers; all of the stuff that I'm supposed to be doing in the house that isn't getting done; random infections; other family members' health issues; and on and on and on.
So there's been some stuff, is what I'm saying. But not writing about the stuff gets me into trouble, so I'm re-committing (for the Xth time) to writing here more often. At least once a week, hopefully more. About stuff that matters, not just random gobbledegook. So I shall see you all back here, very soon. Till then, be As Well As Possible.
Monday, April 02, 2012
Dear Entertainment Weekly,
Although my Entertainment Weekly did arrive today, not only was it unreadable to me, but it actually managed to set of a nifty asthma attack, due to the inclusion of perfume ads. There have never before been odorous ads included in my copy of EW (and I've been a subscriber on & off for about 12 years), so I am particularly disappointed with the fact that there was no notice or invitation to opt out regarding your magazine's intention to add ads with fragrances. There are many health issues which could be negatively impacted by your decision, including my own, and to so completely ignore the needs of your readers with disabilities, seems a grave oversight. It was not my intention to start the weekend with a heavy dose of steroids, just as my as I am sure it was not your intention to cause such a need, but when it comes to people's health, intention doesn't matter nearly as much as actions. I suggest, in the future, that you enable the customers of your magazine to have the choice over whether these ads are included or not.
I did contact your 'customer service representative' by phone, and was given the option to be removed from the perfume ad list when it comes to future issues, which is great. However, it may take up to a month (meaning an additional 3-4 issues) before this takes effect. So now I will potentially miss out on a month's worth of my paid subscription, during which time I can not buy the issue on news stands either, because they too would include the odorous ads, all due to a decision made my your magazine that an easy notification would have prevented. This does not even take into account my current discomfort - an asthma attack only seems like no big deal to people who aren't having them. I also realized, after I hung up the phone, that my complaint would likely go unheard by anyone else: the young man I spoke to changed the options of my subscription, and that was the end of that. But it isn't for me: I didn't have the option of forgoing the breathing difficulties this morning, and I don't think you should have the option of ignoring the kind of damage your oversight can cause.
I'd like you to consider instead that your magazine had been proactive towards its customers with disabilities (or even those who just don't like these ads): If you had included a little note about it in your magazine a few months ago, for some reasonable amount of time, given a little forewarning "Note To All Customers: If you are a subscriber of our magazine, please know that we will begin including perfume/cologne ads as of XY/XY/12. If you would like to opt out of such ads, please contact us at www.ew.com prior to (start date), so that there will be no interruption to your service." Simple: two sentences, and you've prevented a TON of possible adverse health issues; looked out for your consumers and helped them see that they are in fact, valuable to you; and maybe even gotten some great word of mouth press regarding your brand's willingness to be a truly accessible magazine. (I know that anytime a service I am using goes out of their way to make me feel valued, I tend to tell everyone I know about it. The opposite, is also, unfortunately and obviously, true as well.)
Instead it's (thankfully a relatively minor) illness & outrage on my part (although I should be used to being overlooked, despite the fact that I am a paying customer, I don't know that I ever will be), and a truly missed opportunity to step up to the plate, accessibility wise, on yours.
I look forward to hearing from you,
I did contact your 'customer service representative' by phone, and was given the option to be removed from the perfume ad list when it comes to future issues, which is great. However, it may take up to a month (meaning an additional 3-4 issues) before this takes effect. So now I will potentially miss out on a month's worth of my paid subscription, during which time I can not buy the issue on news stands either, because they too would include the odorous ads, all due to a decision made my your magazine that an easy notification would have prevented. This does not even take into account my current discomfort - an asthma attack only seems like no big deal to people who aren't having them. I also realized, after I hung up the phone, that my complaint would likely go unheard by anyone else: the young man I spoke to changed the options of my subscription, and that was the end of that. But it isn't for me: I didn't have the option of forgoing the breathing difficulties this morning, and I don't think you should have the option of ignoring the kind of damage your oversight can cause.
I'd like you to consider instead that your magazine had been proactive towards its customers with disabilities (or even those who just don't like these ads): If you had included a little note about it in your magazine a few months ago, for some reasonable amount of time, given a little forewarning "Note To All Customers: If you are a subscriber of our magazine, please know that we will begin including perfume/cologne ads as of XY/XY/12. If you would like to opt out of such ads, please contact us at www.ew.com prior to (start date), so that there will be no interruption to your service." Simple: two sentences, and you've prevented a TON of possible adverse health issues; looked out for your consumers and helped them see that they are in fact, valuable to you; and maybe even gotten some great word of mouth press regarding your brand's willingness to be a truly accessible magazine. (I know that anytime a service I am using goes out of their way to make me feel valued, I tend to tell everyone I know about it. The opposite, is also, unfortunately and obviously, true as well.)
Instead it's (thankfully a relatively minor) illness & outrage on my part (although I should be used to being overlooked, despite the fact that I am a paying customer, I don't know that I ever will be), and a truly missed opportunity to step up to the plate, accessibility wise, on yours.
I look forward to hearing from you,
Saturday, March 24, 2012
I'm sick of myself
I know I've been rather quiet of late, but I'm going through one of those periods of having SO MUCH to say, but none of it seems worth remarking upon. I'm living too much in my own head, which is a constant failure of mine, you might note. It's funny because I feel like I have so much to say, but perhaps I have already said it all, or someone else has - clearer, more convincingly, more precisely. I spend a lot of time reading things, marking things, copying things, pinning things, caught between thinking "Thank god, other people feel this way too!" and "See: Someone else has said it already, so keep your own ramblings to yourself." I am feeling both unworthy and completely worldly - as if I am learning new things every single minute of every single day, but they were things that everyone else has already known, and I am just the last to catch on.
I am going through a period of change, that much is certain, and it's quite unnerving to look at yourself and not recognize the person you are becoming. Some of the changes are positive, and purposeful and challenging - things I have been working so hard to address in myself, and am finally starting to see improvements in. Others are things I had no real concept of - I didn't even begin to think they were lurking in the corners, waiting to greet me when I finally got around to them. These are the most unwelcome, of course, the ones that spring up just when you think you've finally got something conquered... "But wait," it says, slithering out just as you're congratulating yourself on some great accomplishment, some true challenge that you have met with all your courage, "you've forgotten about me, and I am a much more formidable foe than the last fellow." It seems there are no end of corners, no end of foes.
And, again, at the same time, I find myself completely sick of how much I am thinking of myself - all of this questioning and second guessing, and erasing of mental tapes, and it begins to seem as if I do little else but sit and contemplate my own life, or read others accounts of how they contemplated their lives and strive to apply it to my own struggles. Which, while a worthy goal, does not a good friend, sister, aunt, daughter, granddaughter make.
So everyone else's worries pile in, or my worries about their worries, if I am being specific. Or my worries that I am ignoring them, being selfish, not giving them the attention they deserve. And somehow, in that muddle, I've come full circle again, and am thinking about my own faults and follies, instead of the people I was meant to be attending to.
I don't know about you, but all this introspection is giving me a headache. I'm going to do something for somebody else today: I don't care who, just so long as I'm not stuck in my own mental muddle for one more minute.
I am going through a period of change, that much is certain, and it's quite unnerving to look at yourself and not recognize the person you are becoming. Some of the changes are positive, and purposeful and challenging - things I have been working so hard to address in myself, and am finally starting to see improvements in. Others are things I had no real concept of - I didn't even begin to think they were lurking in the corners, waiting to greet me when I finally got around to them. These are the most unwelcome, of course, the ones that spring up just when you think you've finally got something conquered... "But wait," it says, slithering out just as you're congratulating yourself on some great accomplishment, some true challenge that you have met with all your courage, "you've forgotten about me, and I am a much more formidable foe than the last fellow." It seems there are no end of corners, no end of foes.
And, again, at the same time, I find myself completely sick of how much I am thinking of myself - all of this questioning and second guessing, and erasing of mental tapes, and it begins to seem as if I do little else but sit and contemplate my own life, or read others accounts of how they contemplated their lives and strive to apply it to my own struggles. Which, while a worthy goal, does not a good friend, sister, aunt, daughter, granddaughter make.
So everyone else's worries pile in, or my worries about their worries, if I am being specific. Or my worries that I am ignoring them, being selfish, not giving them the attention they deserve. And somehow, in that muddle, I've come full circle again, and am thinking about my own faults and follies, instead of the people I was meant to be attending to.
I don't know about you, but all this introspection is giving me a headache. I'm going to do something for somebody else today: I don't care who, just so long as I'm not stuck in my own mental muddle for one more minute.
Wednesday, March 14, 2012
Insomnia, Devil: same difference.
You guys? This insomnia is so massive that I'm almost impressed. I feel like this is just another example of how my chronic illnesses are combining in a manner created to drive me over the edge. It's like they all fit together just so - not interlocking and meshing like a nice puzzle, but all jagged edges and hard corners and raw spaces that rub up against one another till they bruise and bleed.
This one requires that I exercise; that one makes exercising without passing out a near impossibility.
This one says carefully plan meals & eat healthy; that one says have no energy for cooking, no brain for the math required, and a nausea so lasting you might as well be living on board a rolling ship.
This one says wow, you're super-emotional and could really use a hug; that one says a hug will cause you more pain than ripping off your own fingernails.
This one says be super exhausted for every minute of every day forever; that one says, and also don't even think about sleeping.
They just all mesh so nicely together, don't they?
What with all of the insomnia, especially since I had been making small, tiny, minute improvements in my sleep over the course of the past few months, and a pain flare up that came out of nowhere (hello, ridiculous barometer: I'm wondering if you are not a main culprit here), I am beginning to feel like I can not handle things. Easy things like getting out of bed and washing off an apple to eat it (instead I find myself sitting in the kitchen staring aimlessly into space and wondering what the hell I went out there for), harder things (go ahead and ask me when I last showered: I dare you), and impossible things (lunch tomorrow with Grandmother and some cousins I haven't seen in three years? Never going to happen!) - they're all just sort of accumulating in a little pile over here, that I'm labeling "Hell no, but thanks for asking!"
It's hard to explain what the combination of CFS & Insomnia is really like - one of those 'you have to be there' kind of things, I guess. Because everybody can't sleep sometimes - a sleepless night now and then is just a part of life - and so people think they get it. But they don't. It's like being underwater, like drowning, almost. You know you need to push up towards the surface and get air, take a breath - get more than 5 minutes of sleep at a time - but you don't have the energy too push off in the right direction and your arms and legs won't work together for some reason, and your brain says helpful things like "now is a good time to panic, only do it as slowly as possible, if you please", and you wind up just floating away again, hoping the air - the SLEEP - will come and get you on its own. Parents of newborn babies come the closest to understanding it, I think - the sheer levels of exhaustion you can reach, which you didn't even know existed until right this moment. At least, that's what they tell me.
The other day, after about 37.5 hours with no sleep, and with my FM pain level reaching "i will claw my face off now" proportions, & having tried every 'sleepytime' trick in my repertoire, I was just laying on my bed, curled up as best I could, waiting. And every minute that ticked by made me more angry, made me feel totally out of control, made me want to track down every single doctor who'd told me to 'set a sleep clock' or 'try sleeping with the windows open' or how exercise would make my pain go away and stab them somewhere vital. Not that I would, but it seemed like a good idea, just so that I could say something equally meaningless like "try not to get stabbed, because then it won't hurt so much." It's just ridiculous, the things you hear when doctors have no freaking clue what your disease is/means/feels like.
Anyways, to avoid a similar fate tonight, and because I hope some people are still reading here, even if only occasionally, here I am at 3 am typing away, hoping that my words make sense (and being eternally grateful for spell check, because holy jebus, if you could see some of these errors). I'm trying not to be angry that the rest of you are sleeping peacefully in your beds, but not angry is about all I can manage: don't be jealous is definitely asking too much of myself. But being green eyed is understandable, I think, given the circumstances. Next, I'm going to go attempt to bake cookies, because if there's anything an exhausted insomniac should do at 3 in the morning, it's play with fire, while attempting to make an edible food-type product, completely unsupervised.
Well, when I put it that way, it doesn't sound like the wisest decision I could make, so maybe I'll just open another book instead. Or order something off of the internet. Those sound like good options, right? Aw, what do you care? You're probably snoring away anyways, you lucky bastards. Well, I promise not to hate you too much, if you'll come back soon.
This one requires that I exercise; that one makes exercising without passing out a near impossibility.
This one says carefully plan meals & eat healthy; that one says have no energy for cooking, no brain for the math required, and a nausea so lasting you might as well be living on board a rolling ship.
This one says wow, you're super-emotional and could really use a hug; that one says a hug will cause you more pain than ripping off your own fingernails.
This one says be super exhausted for every minute of every day forever; that one says, and also don't even think about sleeping.
They just all mesh so nicely together, don't they?
What with all of the insomnia, especially since I had been making small, tiny, minute improvements in my sleep over the course of the past few months, and a pain flare up that came out of nowhere (hello, ridiculous barometer: I'm wondering if you are not a main culprit here), I am beginning to feel like I can not handle things. Easy things like getting out of bed and washing off an apple to eat it (instead I find myself sitting in the kitchen staring aimlessly into space and wondering what the hell I went out there for), harder things (go ahead and ask me when I last showered: I dare you), and impossible things (lunch tomorrow with Grandmother and some cousins I haven't seen in three years? Never going to happen!) - they're all just sort of accumulating in a little pile over here, that I'm labeling "Hell no, but thanks for asking!"
It's hard to explain what the combination of CFS & Insomnia is really like - one of those 'you have to be there' kind of things, I guess. Because everybody can't sleep sometimes - a sleepless night now and then is just a part of life - and so people think they get it. But they don't. It's like being underwater, like drowning, almost. You know you need to push up towards the surface and get air, take a breath - get more than 5 minutes of sleep at a time - but you don't have the energy too push off in the right direction and your arms and legs won't work together for some reason, and your brain says helpful things like "now is a good time to panic, only do it as slowly as possible, if you please", and you wind up just floating away again, hoping the air - the SLEEP - will come and get you on its own. Parents of newborn babies come the closest to understanding it, I think - the sheer levels of exhaustion you can reach, which you didn't even know existed until right this moment. At least, that's what they tell me.
The other day, after about 37.5 hours with no sleep, and with my FM pain level reaching "i will claw my face off now" proportions, & having tried every 'sleepytime' trick in my repertoire, I was just laying on my bed, curled up as best I could, waiting. And every minute that ticked by made me more angry, made me feel totally out of control, made me want to track down every single doctor who'd told me to 'set a sleep clock' or 'try sleeping with the windows open' or how exercise would make my pain go away and stab them somewhere vital. Not that I would, but it seemed like a good idea, just so that I could say something equally meaningless like "try not to get stabbed, because then it won't hurt so much." It's just ridiculous, the things you hear when doctors have no freaking clue what your disease is/means/feels like.
Anyways, to avoid a similar fate tonight, and because I hope some people are still reading here, even if only occasionally, here I am at 3 am typing away, hoping that my words make sense (and being eternally grateful for spell check, because holy jebus, if you could see some of these errors). I'm trying not to be angry that the rest of you are sleeping peacefully in your beds, but not angry is about all I can manage: don't be jealous is definitely asking too much of myself. But being green eyed is understandable, I think, given the circumstances. Next, I'm going to go attempt to bake cookies, because if there's anything an exhausted insomniac should do at 3 in the morning, it's play with fire, while attempting to make an edible food-type product, completely unsupervised.
Well, when I put it that way, it doesn't sound like the wisest decision I could make, so maybe I'll just open another book instead. Or order something off of the internet. Those sound like good options, right? Aw, what do you care? You're probably snoring away anyways, you lucky bastards. Well, I promise not to hate you too much, if you'll come back soon.
Wednesday, March 07, 2012
Dear Scholastic,
As a geeky bookworm of a kid, I looked forward to nothing more than Scholastic Book day at school - the day those thin, two page booklets full of books to buy would get passed out. We rarely ordered from them (my grandmother was a teacher, so if we had stuff we really wanted, she'd order for us with her class order), but the idea that there were all these new (to me) books to add to my library list was one of my favorite parts of school, hands down. And I've read a million excellent books that you've published, or had a part in, and, as a former K/1st Gr teacher, taught out of more than one of them myself. That's why I was disheartened this morning to see these two specific groupings of books available for sale through one of my many daily deal outlets:
I'm going to be really clear and say that I have obviously not read these books, and hope that there is not such a great difference between the two sets as the titles imply, but it seems unlikely that this could be so. The titles make it clear that the girls' set is concerned with appearances and relationships - things girls can be into; while the boys' set is equally stereotypical - boys need to survive and have adventures, can face challenges. Is this the message we should be sending to our children - not just our girls, who need to know they can face challenges too, and don't have to be glamorous while doing so, but also to our boys, who should also be capable of being good friends? Is there a reason why girls can't be adventurous as well as glamorous? Or why boys can't be gods who know how to survive anything? This kind of gender binary crap is beneath you.
Yes: both boys and girls have their own guide to being the "best at anything," and hopefully the chapters of those books are less gendered - although a quick glimpse of their Amazon book descriptions does not bear out that hope. The boy's book includes how tos on all sorts of interesting things:
I just don't get it, and I would hope that a company that is dedicated to helping educate children would endeavor to help them learn that they don't need to be limited by what a girl/boy should do. So, Scholastic: You Can Do Better.
Sincerely, NTE
 |
| The Girl's Book of Glamour: A Guide to Being A Goddess; The Girls' Book: How to be the Best At Everything; The Girls' Book of Friendship: How to Be the Best Friend Ever. |
 |
| The Boys' Book of Adventure: Are You Ready to Face the Challenge?; The Boy's Guide: How to Be the Best at Everything; The Boys' Book of Survival: How to Survive Anything, Anywhere. |
I'm going to be really clear and say that I have obviously not read these books, and hope that there is not such a great difference between the two sets as the titles imply, but it seems unlikely that this could be so. The titles make it clear that the girls' set is concerned with appearances and relationships - things girls can be into; while the boys' set is equally stereotypical - boys need to survive and have adventures, can face challenges. Is this the message we should be sending to our children - not just our girls, who need to know they can face challenges too, and don't have to be glamorous while doing so, but also to our boys, who should also be capable of being good friends? Is there a reason why girls can't be adventurous as well as glamorous? Or why boys can't be gods who know how to survive anything? This kind of gender binary crap is beneath you.
Yes: both boys and girls have their own guide to being the "best at anything," and hopefully the chapters of those books are less gendered - although a quick glimpse of their Amazon book descriptions does not bear out that hope. The boy's book includes how tos on all sorts of interesting things:
Found yourself in a sticky situation? Inside you'll learn how to escape quicksand (p. 40), build a raft (p.41), start a survival fire (p.99), or fly a helicopter (p. 11).while the girls choices are certainly more stereotypically 'girly':
Want to impress your friends? Now you can rip a phonebook in half (p. 35), hypnotize a chicken (p. 56), or read their minds (p. 73).
Boring Saturday afternoon? Not anymore when you find out how to make a waterbomb (p. 79), a boomerang (p. 95), or a volcano (p. 88).
And loads of other keen things you need to know how to do!
Want to be known for your unique style? Inside you'll learn how to design your own clothes (p. 35), do the perfect manicure (p. 82), or make your own lip gloss (p. 11).Here's the thing: I get that these books follow a trend - following The Dangerous Book for Boys book that came out a few years ago, and it's Daring Book for Girls cohort - and that there's a call for these kind of books with all these different skill sets that are seen as retro throwbacks to when kids knew things like how to play cat's cradle and build a campfire out of sticks. I even think the two books I just mentioned were both interesting and informative (if similarly gender-biased). I just don't get why it has to be so gender specific: I know more than one boy who could use some information about how to deal with a bully and am sure there are some who would be interested in making crystals or scrapbooks (if only they weren't just for girls!) And I was a young girl, and I happen to know a few of them currently - (me and) every single one of them would like to read minds, loves to play with waterbombs, and would be the hit of a party if she could rip a phonebook in half. I mean: c'mon.
Feel like impressing your friends? Show them how you can make a crystal (p. 16), juggle one-handed (p. 33), or deal with a bully (p. 42).
Bored and need something to do? Not anymore when you find out how to keep a secret diary (p. 88), make a scrapbook (p. 9), or put together a dance routine (p. 24).
And tons of other neat-o things you need to know how to do!
I just don't get it, and I would hope that a company that is dedicated to helping educate children would endeavor to help them learn that they don't need to be limited by what a girl/boy should do. So, Scholastic: You Can Do Better.
Sincerely, NTE
Sunday, March 04, 2012
Choosing your friends wisely
Here's yet another letter I've written lately, this one to Carbonite CEO David Friend, re: Limbaugh's ridiculous show (how is that still on the air?)
Mr Friend -
You don't know me, but I am glad to find your contact information here on your website - it is a good sign when the president of the company encourages his consumers to contact him. I hope that this e-mail, although serious in tone, will be a welcome one. I am a loyal Carbonite customer for nearly three years now, and I love your product & services. I have enjoyed the simplicity of your product (the not having to remember whether I backed things up already, especially) and the quality of support I have received from your employees during my time as a Carbonite consumer. I also am quite glad to be able to support a local company.* I know that because, as much as I am able, I aim to be a conscientious consumer, which means supporting the local economy when it's possible, as well as shopping around for value, doing research into business practices, etc. By that means, and my own experiences, I have learned a number of positive things regarding your company and your services. However, I have quite recently become aware of an issue that has lead me to seriously consider ending my relationship with your company - the fact that you are listed as a major sponsor of the Rush Limbaugh show.
Your company certainly has the right to place ads with whomever they choose, and I'm sure (for reasons that are baffling to me as a human being) that there are benefits to being associated with the Limbaugh show that I, since I am totally unconcerned with media relations, am completely unaware of - Someone must listen to that show, because it is still on the air. What I am concerned with, however is the fact that the show you sponsor is a show in which the host has repeatedly made comments that are misogynistic, racist, homophobic, ableist, and destructive to our country - and to specific individuals as well. I believe that his speech, while perfectly legal and protected under the 1st Amendment, is often amoral - his latest debacle of calling a woman who dared to speak about her own reproductive & health care needs a "slut", for example -, hateful, hypocritical, and ignorant. There is nothing to support about a man, a show, a program, who sees nothing wrong with calling the first lady "uppity" or thinks that using the term "feminazi" is appropriate in any context (let alone repeatedly and with glee). There is no way I want my money to go a company who thinks it worth their time & money to support a man who thinks it's ok to tell an African-American caller to "take the bone out of your nose and call me back," or to encourage the use of slurs like 'retard', because "Our political correct society is acting like some giant insult’s taken place by calling a bunch of people who are retards, retards. I mean these people, these liberal activists are kooks. They are looney tunes. And I’m not going to apologize for it." Are those the words of a man you want representing your company?
I really hope not.
I honestly hope that your company chose this sponsorship based on some random financial calculations - that some math wizard in your advertising department said: 'Hey, look: this is where the money could be.' and you followed along, not knowing that cost would be a real sense of integrity for your company. I hope that is the truth of it, and that you do not, in fact, agree with Mr. Limbaugh on any of this subjects (or the millions of other insulting and derogatory remarks he makes on a daily basis against women, people of color, people of religions that are foreign to him, people with physical limitations, etc.
I understand sometimes that business decisions get made with out all of the facts - like you choosing to sponsor this show, or me choosing to use Carbonite's product. But we both know the facts now - I know you sponsor a show that contributes only hatred and lies to the national discussion, and now, so do you. One of us will be making be making a new decision very shortly - either you will end your sponsorship of Mr. Limbaugh's show, or I will end my association with your company. I will be sorry to do it, for it will make my life more complicated & I think you have a high quality product, but I believe very strongly in the power of words, and I won't use the services of a company who allows such hatred to be spewed in its name.
Sincerely,
NTE
*Carbonite is, at least in part, Massachusetts-based.
Update: I had this post scheduled to go up today, and late yesterday on Twitter saw that Carbonite had removed their ads from Rush's show due to "the greatest outcry" they've ever seen & that Rush "overstepped any reasonable bounds of decency". Win!
Mr Friend -
You don't know me, but I am glad to find your contact information here on your website - it is a good sign when the president of the company encourages his consumers to contact him. I hope that this e-mail, although serious in tone, will be a welcome one. I am a loyal Carbonite customer for nearly three years now, and I love your product & services. I have enjoyed the simplicity of your product (the not having to remember whether I backed things up already, especially) and the quality of support I have received from your employees during my time as a Carbonite consumer. I also am quite glad to be able to support a local company.* I know that because, as much as I am able, I aim to be a conscientious consumer, which means supporting the local economy when it's possible, as well as shopping around for value, doing research into business practices, etc. By that means, and my own experiences, I have learned a number of positive things regarding your company and your services. However, I have quite recently become aware of an issue that has lead me to seriously consider ending my relationship with your company - the fact that you are listed as a major sponsor of the Rush Limbaugh show.
Your company certainly has the right to place ads with whomever they choose, and I'm sure (for reasons that are baffling to me as a human being) that there are benefits to being associated with the Limbaugh show that I, since I am totally unconcerned with media relations, am completely unaware of - Someone must listen to that show, because it is still on the air. What I am concerned with, however is the fact that the show you sponsor is a show in which the host has repeatedly made comments that are misogynistic, racist, homophobic, ableist, and destructive to our country - and to specific individuals as well. I believe that his speech, while perfectly legal and protected under the 1st Amendment, is often amoral - his latest debacle of calling a woman who dared to speak about her own reproductive & health care needs a "slut", for example -, hateful, hypocritical, and ignorant. There is nothing to support about a man, a show, a program, who sees nothing wrong with calling the first lady "uppity" or thinks that using the term "feminazi" is appropriate in any context (let alone repeatedly and with glee). There is no way I want my money to go a company who thinks it worth their time & money to support a man who thinks it's ok to tell an African-American caller to "take the bone out of your nose and call me back," or to encourage the use of slurs like 'retard', because "Our political correct society is acting like some giant insult’s taken place by calling a bunch of people who are retards, retards. I mean these people, these liberal activists are kooks. They are looney tunes. And I’m not going to apologize for it." Are those the words of a man you want representing your company?
I really hope not.
I honestly hope that your company chose this sponsorship based on some random financial calculations - that some math wizard in your advertising department said: 'Hey, look: this is where the money could be.' and you followed along, not knowing that cost would be a real sense of integrity for your company. I hope that is the truth of it, and that you do not, in fact, agree with Mr. Limbaugh on any of this subjects (or the millions of other insulting and derogatory remarks he makes on a daily basis against women, people of color, people of religions that are foreign to him, people with physical limitations, etc.
I understand sometimes that business decisions get made with out all of the facts - like you choosing to sponsor this show, or me choosing to use Carbonite's product. But we both know the facts now - I know you sponsor a show that contributes only hatred and lies to the national discussion, and now, so do you. One of us will be making be making a new decision very shortly - either you will end your sponsorship of Mr. Limbaugh's show, or I will end my association with your company. I will be sorry to do it, for it will make my life more complicated & I think you have a high quality product, but I believe very strongly in the power of words, and I won't use the services of a company who allows such hatred to be spewed in its name.
Sincerely,
NTE
*Carbonite is, at least in part, Massachusetts-based.
Update: I had this post scheduled to go up today, and late yesterday on Twitter saw that Carbonite had removed their ads from Rush's show due to "the greatest outcry" they've ever seen & that Rush "overstepped any reasonable bounds of decency". Win!
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