Question Time: Changing Experiences

Question Time is a series in which we open up the floor to you, commenters. We invite you to share as you feel comfortable.

How have your experiences of being disabled changed over your lifetime/the time you’ve been disabled?

6 thoughts on “Question Time: Changing Experiences

  1. Everywhere I go lately, this question is popping up. And I’m not sure I’m ready to sit down and write a big deal about it. But briefly?

    When I first became disabled when I was a child, the whole focus was getting back to “normal” as soon as possible. My parents busted their butts trying to give me a normal childhood and adolescence. Back to school, back to sports, etc. For the next 50 years, I spent much of my energy trying to be like everybody else. Full-time school. Trying to dress like the other girls despite all the bracing and mobility aids. Full-time work. Marriage, house, kid. Hiking (yeah, really–hiking), swimming, even gym memberships a couple of times over the years. I would get on this roller-coaster where I would go and go and go, crash, be nearly non-functional until I could semi-recover, and repeat. But end result? I was able to maintain the fiction for almost five full decades that I could do anything anybody else could do. I might have been slower at it, but I could do it. I was competitive about it, overcompensating, shoring up my denial system.

    Then I learned, somewhat belatedly, that was so the wrong thing to do. Just sped up the deterioration. Last Spring I crashed and just couldn’t come back. I dragged my ass through the summer, took a vacation and did too much, came back tireder than when I left. About that time, I figured out what was going on, took a full week at Thanksgiving and did nothing, and did it again at Christmas. I felt much better after taking those two big breaks but I will never feel again like I did just a year ago, never mind 10 years ago. And at the same time, it was depressing as hell taking a staycation and not getting out and doing anything fun. But it helped, and I continue to learn more all the time about what works for me and what doesn’t.

    I have been disciplined about getting enough rest, and my days and weeks go much better now than they did all last year. My energy levels are more even from day to day and over the course of a week, not the roller-coaster thing. But just last night I got all bent out of shape about something, stayed up late obsessing and compulsing over it, and have felt like absolute crap this entire day. That’s all it takes any more: One emotional upset, one night without sleep, and I’m shot out. I am more sensitive to cold.

    I’ve pretty much quit doing housework, with the predictable result. I am still in the process of grieving the loss of simple pleasures like a walk in the woods. I don’t even walk the dog any more. And it’s funny the way the universe works: About six months before the crash, I adopted a dog who turned out to hate going for walks. It’s like she knew before I did. We’d walk half a block and she’d just refuse to take another step unless it was towards home.

    So how my life has changed is, now I just go to work and the weekends are spent recovering and getting geared up for the next week and wondering how many more years I’ll be able to do even this before I have to go part time or even quit. Will I make it to retirement age? It’ll be close. If I didn’t like my job so much, and if I could afford it, I’d cut back a bit now so I could have a life outside the office, but that’s not an option for us.

    Does this shorten my life expectancy? I don’t know, haven’t seen any data on that. Folks with my disability who’ve been in the obits lately died in their 80s, so maybe not. These are things I never had to think about before. The myth about us kids at the time was that our recovery from the acute phase was more or less complete in most respects, and that our health/lifestyle/life expectancy need be no different than anyone else’s. Listening to my body and pacing myself is much more at the forefront of my conscious thinking than it used to be, by far. Reading more about my disability and educating my health care providers (what am I, a med school?) also occupies more of my time and energy than it used to. And I’m more outspoken about personal and general disability issues than I used to be.

    Hunh. Not so brief, was I? Maybe I needed to say that. Thanks for asking. I’m looking forward to reading everybody else’s responses.

  2. Accepting my limitations took a long time. For a while, before the proper medication cocktail was established, my life was about as chaotic as my emotional state. My life decisions reflected the variations in my mood. It took a really horrible manic episode, after which the guilt and shame of seeing all the damage I had caused, people I had upset, and things I had said—before my psychiatrist finally decided to treat me with a mood stabilizer in addition to other drugs. If only it had been tried years before. That was the point at which true healing arrived and when I was finally able to rest of something close to stability. Until my mind was out of balance, I couldn’t begin to feel whole and solid.

    Even before then, I had always known that something was up with me. I was an unusually melancholic and anxious child who self-isolated and couldn’t bear much in the way of interpersonal contact. It became full out major depression by my mid-teens, at which point I kind of romanticized my misery to some degree, well before it became fashionable to do so among some groups. But when I came close to dying when I was 19 due to a suicide attempt and spent three months in the hospital undergoing shock therapy, suddenly I had no desire to wear my illness on my sleeve anymore.

    What had purely been depressive episodes then became mixed with manic episodes by the time I was 21 or 22, which took a whole different kind of adjustment. For a while, mania feels like supreme health. I had been introverted and withdrawn, and now suddenly I had confidence and poise. And for a while, until it builds and builds and then spirals out of control, it is intoxicating for those who have always been socially awkward or not particularly confident in their own skin.

    My process of healing was a bit different from some who have an onset of bipolar later in life. They’re used to being able to live a life without obstacles and lament that it no longer works that way. Their grieving process is different than mine, since health was always some deferred goal I strove for but at times never believed I would ever achieve. And though I am better now than I have been in a long time, I still have good days and bad days and I’m still trying to temper my expectations of living the life I have versus the life that others take for granted.

  3. Having been diagnosed with generalized anxiety disorder enabled me to reframe a lot of my memories from childhood in that context– suddenly, a lot of my difficulties from earlier in life make sense. Being depressed still blows, though.

    But my disability–and accepting it as such by finding this community–has made me much more keenly aware of PWDs out in the world and accessibility issues (to the point that when I am able to claw my way out of this depression and do more than the bare minimum required to get me through my day-to-day life, I hope I can spend some time advocating as an ally for PWDs with visible disabilities). I’m also really keenly aware of the portrayals of PWDs (especially the mentally ill) in the media.

  4. When I was younger (a child,and to a large extend still also my teens), being autistic didn’t have nearly as much impact for me (or a rather different one anyway). Yeah, I always rather sharply realised I was different and not in asmall way, but a lot of the stuff I have trouble with now I wasn’t supposed to do (or do alone without help) anyway. Then after a certain age, and not all that smoothly either, it’s really pretty sudden, there is a lot of stuff you have to do that I couldn’t, and no one (including me) even had any idea it was going to be a problem because it was all new. Also, as a child and especially teen, I felt like I had to ‘pass.’ So I was willing to devote nearly all my resources to be as close to ‘normal’ as I could. It was a really really bad idea, and that’s really changed too, I both can’t and really won’t do that anymore.

    The experience of dyscalculia is rather different too. On the one hand I’m infinitely less bothered by it because there are no more school subjects that heavily involve maths and certain seemingly related things for me to constantly fail, and worry about not making it through school solely on that (not even adding issues from other things). On the other hand, then I suddenly had to really manage my own money and keep an eye on a hundred things like insurance and ‘zorgtoeslag’ and whatnot.

    When I was young, the anxiety and fear always seemed to be my biggest issue to me, now it doesn’t seem like a big deal at all. Some things grew in impact, others lessened, and/or they changed.

  5. It’s too long and twisty to know how to write about it. Born with some things, acquired others, and some things I was born with were progressive. Others were not treated until adulthood. And all the while the expectations outside of me have shifted all over the place too. No good way to write about it all.

  6. I became more politically aware right around my first chronic problem (thyroid, fall 2001).

    The thyroid seemed to take forever, and it was “invisible” to people who knew nothing, but not to the doctors. But looking back, it was out within a year and a half.

    Now I have a truly “invisible” illness, and I’m even more aware of the world around me when it comes to disability rights and access. But that’s due to finding this site as much as anything. Plus, I’m still a kid!

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