I have had a great many people comment with surprise and/or praise about despite my disability, I’m still working towards doing what I want with my life. It’s always been something that has mildly bewildered me, to be completely honest. From my point of view, the alternatives are substantially more unpleasant.
So today, I’m trying to put aside my feelings that it’s the only obvious choice and think (and talk) about what it takes, what it means, to keep going.
In complete honesty, the first thing it takes is support. I’ve been lucky; most people in my life have been supportive. I think the real keys for me are the support I get from my boyfriend, from my service dog, from my medical professionals, from my law school, and from the state I live in. My boyfriend keeps track of my medications and refills them (and reminds me to take them), does housework, drives me to and from places, fetches things, carries and moves things, and occasionally literally half-carries me around (when I’ve dislocated something). My service dog literally supports me walking, picks things up, opens doors, pushes buttons, nags me out of bed, reminds me to play, and gives me affection. My medical professionals treat my symptoms and occasionally fill out paperwork for things like my parking placard, my service dog, and my state-provided support, not to mention fighting the insurance system on my behalf. My law school has done things like get me electronic copies of my textbooks, arrange for note takers, put in an electronic door opener, and provide a mentor for a year to help me to really do well in school. The state provides me with a personal care assistant for 18.5 hours a week to do all the things I can’t, like laundry and dishes and moving things around the house, and gives me medicaid health insurance. Without all of these, I don’t think I’d be able to keep on going. And that’s without even getting into the harder to define sorts of support that I get from friends, classmates, and family.
After that, I suppose what it takes is inside. The thing about having a disability is that it gives you a great excuse not to do things, one that few people will badger you over. It’s that much easier to say “I can’t”. More than that, it’s that much easier to believe you can’t. Particularly so when what you’re dealing with is mental illness, because it fundamentally screws up your perception of things.
So what does it take? You have to have some kind of goal, some dream, first. Once you have that target to aim at, you need the drive to get there. Perseverence. Hope. Faith in yourself. You need the ability to recognize your limitations and either make attaining your goal work within those limitations or extend your limitations. You have to ask for help. You have to figure out how to differentiate between compromising your goals and allowing them to evolve (which is a really tough line!).
I wonder sometimes if the real bottom line is whether you think there’s a choice in continuing towards your dreams. For me, the alternative – throwing my hands up and giving in – is so unpalatable that it isn’t a choice. Because I don’t see giving up as a choice, I have to find a way to make things work. If giving up was something I could concieve of doing without massive amounts of emotional pain and a terrible sense of loss of self, then I would imagine it would be harder to scrap together what it takes to keep going.
It’s usually not conscious choices to keep going, just a tendancy to put one foot in front of the other. If it required making that decision over and over, re-weighing and such, all the time, I don’t know that I could do it. The fact that I don’t often question whether or not I ought to keep going is in and of itself a means of protecting myself – if I do not ask if I should give up, it makes it harder to do so.
Most often, it is a habit of continuance and making things work, rather than some brave decision to keep going in the face of rising odds. It is the day to day trudging, not a risky and daring feat of perseverence.
Ah, but that day-to-day trudging you do looks to others like risky, daring perseverance in the face of odds most of them can’t imagine.
Don’t sell yourself short. You’re doing something extraordinary as you cope with challenges that would make Lance Armstrong whimper. You’re very strong and, yes, courageous.
Hugs for you, your dog, and your boyfriend. I have no doubt at all you’ll reach your goals — and then set new ones.
It’s that loss of self that would come with giving up that frightens me the most. I just can’t do it. But you’re right, figuring out the line between giving up on goals and allowing them to evolve is imperative.
Thanks for a meaningful post – this really resonated with me.
You are correct – there is the alternative, but the alternative is too depressing. The only viable alternative is to be hopeful and to keep believing and keep moving.
I get equally bewildered by this kind of praise. I sometimes wonder if this kind of praise is a type of disabilism – it does sometimes come across as patronising when you get told how brave you are, simply because you are doing what you want to do. On another note alot of what you said struck home for me. Thanks for putting some of my feelings into words!
That’s how I’ve sometimes read it. Oh my, aren’t you a brave little crippled girl, trying to have a life like everyone else! How inspiring!
I think that this kind of praise is partially based on the ableist idea that life would be so miserable, so impossible, if you were disabled. Maybe some of it is actually a purer assessment that we work against higher odds and harder obstacles, but I think a lot more is based on ableism.