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.) 

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!)


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.  

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. 


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.*