Changing Expectations

Perhaps the most difficult part of becoming disabled is the way it changes what you are capable of.

Before I became disabled, I was capable of a lot of things.  I was a camp counselor.  I backpacked around Europe.  I participated in a small local literacy drive.  I was a dancer.  I bartended.  I worked trade-shows, spending all day on my feet.  I made costumes, sometimes hand-sewn.  I was a swordfighter, and a fencer.  I can hardly begin to list all of the commitments I made.

Now…I am involved in one club, instead of the three or four I used to.  I have trouble even making it to just 2 courses, when I used to take 4-6 each semester.  Dinner often happens only because I have someone who comes in and helps me every evening.  I cannot wash the dishes, chop vegetables, vacuum, scrub anything, and the list goes on and on.  To be perfectly honest, on the worst days, I cannot so much as make it to the bathroom unassisted.

The change is…hard.  My body does not work correctly, and that is a hard thing to be confronted with at 25.  We expect that eventually, some day in the far distant future we’ll get old and arthritic, but we really expect our bodies to be basically functional until then.  We do not expect to be looking at purchasing a wheelchair at 25, particularly in lieu of some type of violent trauma like a car accident.

If you had asked me in the summer of 2007 what I was going to do when I got done with school, I would have told you that I was going to be a district attorney.  I wanted to work violent crimes.  I wanted to lock up people who hurt others, get them off the streets, make the world a safer place.

Instead, now I am faced with the fact that I will probably never be able to work a traditional job.  Certainly not in my chosen field – attorneys typically work 50+ hours per week.  Not happening here, where I have trouble making it to 4 1/2 hours of class (after I manage my doctors’ and physical therapists’ and occupational therapists’ appointments).

So then what do we do?  I know several other young, intelligent women who are severely disabled.  We are all, at this point, trying to figure out the answer: what are we going to do, now that we’re grown up and it didn’t go the way we thought?

We don’t want Social Security Disability.  We may find ourselves in a position of needing it, but I can’t begin to express how deeply we do not want it.  However, we often find ourselves with few options.  If you cannot guarantee that you will be well enough to make even a part-time job consistantly, no one wants to hire you.  The fact that you do great work when you are there is overshadowed by how often you can’t be there.  Tele-commuting doesn’t work if part of why you can’t be consistant will for example put you in bed – which my disability certainly will some days.

For me, the distant, faint hope is teaching at a college level.  I would love to be a law professor; I would be happy as a history or pre-law professor, I think.  Of course, given my health it would probably be as an adjunct professor, teaching one or two classes at most.

It is an enormous, and painful adjustment to make – from ‘I want to do something that I think is vitally important to society, which I think I would be very good at’ to ‘With my health being what it is, what can I do?’

When children are asked what they want to be when they grow up, no one says ‘I want to be disabled on Social Security!’

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