Learning to Be Myself When My Disability Means I Need Help From Others
I used to be very independent — as in hitchhiking across multiple countries by myself independent. Living alone for almost my entire adult life independent. Not answering to anyone, not obligated to do anything I didn’t willingly sign up for independent.
When I got sick, I still did these things. They just became far more difficult. I was throwing up in strangers’ houses, lying on my floor because I couldn’t make it to my bed, unable to continue working. Suddenly independence wasn’t such a good thing.
But I don’t have a choice about being independent. I don’t have anyone close enough to me to help me out regularly. So I live alone, with dishes piling up because I’m in too much pain to wash them. I pass up on super cheap international trips because I can’t figure out how I’d get around a foreign country by myself. I don’t answer to anyone, but no one answers to me, either.
Sometimes I get a glimpse of what my life could be like without so much independence. I go somewhere with friends who help me with my walker, or someone from church comes over to help with the chores. I feel awful about myself, my house, and my life when I can’t get somewhere I need to go or when my apartment is such a wreck I can’t find anything. But really, those things by themselves aren’t enough.
It’s very nice when someone helps me with something I need, like giving me a ride to a doctor’s appointment when I’m too dizzy to drive or bringing me dinner when I can’t stand up long enough to cook. But occasionally people go above and beyond, and they help me do things I don’t have to do to function. They help me go with them to events or take me out to eat or bring their kids over to play with me – things that make me feel not only like I’m able to survive, but like I’m able to live.
One thing I’ve found happens a lot with disability is that if people are around they feel obligated to make sure I have the bare minimum I need. If I’m at a party, for example, the host or whoever invited me might make sure I can get in and have a place to sit. However, that’s usually it. So I have a place to sit, and maybe some food, but if everyone’s hanging out in the kitchen while I’m stuck on the couch because there’s no chairs to sit on in there, I end up bored and lonely staring at the wall while able-bodied people converse with one another. It’s hard for me to get out and about as it is, so it’s really disappointing when I work hard to get somewhere and then I can’t even enjoy being there.
Sometimes being disabled feels like being an awkward piece of furniture – people will make sure I’m situated and out of the way, and then they forget all about me. That’s why it means so much when people help me to do things I don’t have to do, and when they continue including me in the conversation even if I don’t need anything. When they see me as a person who wants to socialize and have adventures instead of a burden that needs to be set aside. Sometimes I feel less like myself because of my lack of independence. But when I have friends who help me do what I really want to do, I realize that I can still be myself even when I’m dependent on others. I might even be more myself than I was before. I just need a little extra help to get there.
Getty image by StockPhotosArt.