The Specter Notes From A Wheelchair {Chronic Illness Blog}


I have a specter in my home. It haunts me. It hulks in awkward corners and it always reminds me that it is waiting for me.

I have been told I should see this as a good thing. I am privileged after all. Ridiculously so to be able to have a wheelchair made specifically for my body that is a luxury rather than a must…for now, as its’ glow in the dark shine of the shadow reminds me.

I live in a very small home and this chair has no interest in hiding. It does not fit in any of our closets. It cannot clear the door to our garage. If it lives in the car there is no room for dogs or groceries.

It is living right now in my living room in front of one of my numerous bookcases. My children find it an entertaining extra seat to rock back and forth and see how many tricks they can do before I kick them out. I don’t want them to play with it. I don’t want to visual of them in a wheelchair. I do not like the visual of me in a wheelchair. The cats, however, love it. Laundry has found it a comfortable place to rest and be ignored.

It isn’t that I do not need my chair. I need it FAR more than I use it. Part is annoyance. I am STUBBORN. A large part is that it is not safe to use on city or town streets. Trust me the ADA does not begin to cover crossing streets, ramps to doors, and small pets and children darting in front of a power chair that takes 5 seconds to stop. If you think 5 seconds is a short time you have never raised a toddler. To badly quote Dr. Who “Don't blink. Don't even blink. Blink and you're dead. Don't turn your back. Don't look away. And don't blink.” It is generally easier to use my canes…unless I’ve dislocated shoulder, wrist, or more recently elbow (I know! Had no idea either that you could do that!) Like most of my life it is an ever-changing balancing act.

I feel guilty every time I look at it. It was expensive. I should use it more. It really helps when I do (unless a curb dumps me on the ground, seriously I would make THE best YouTube videos). Most of the time I’m just not ready, or it’s too much trouble. I can’t wrangle it on my own.

Yes, I am privileged, I have a choice to use my chair. I HAVE a chair. A really nice one. It is a complicated relationship with my ghost of future mobility that right now is blocking my view of some of my favorite books.