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Monday, January 24, 2011

Phantom Wheel Syndrome

I've been back from Kennedy Krieger over a week now and many things are positive. I've heard the words "oh my, you look so much better than you used to" describing my new walking pattern (a backwards compliment if I ever heard one). I have to give all the credit to my wonderful therapists for slowing my butt down, forcing me to look at the particular features of my gait that they felt needed improvement. Lo and behold, it worked! Every once and a while it's good to have a reminder why I'm listening to my therapists: because they know what they're talking about.

To keep this up I've been trying to incorporate walking into my daily activities as much as possible. I've started leaving my wheelchair in places that are not easily accessible or leaving my crutches more readily available. This is generally a good strategy to use, since I am more likely to use my crutches then hop over one legged across the house to get my wheelchair. My parents found that they have to place chairs in spots that I would normally wheel up to, for example the kitchen table.

It's been a little over a year since my wheelchair became my chief mode of transportation. This recent change to a more mobile lifestyle has given rise to an interesting phenomenon that I've nicknamed Phantom Wheel Syndrome. The crutches force me to pull the seat relatively far back in order to sit down; after I sit down I have to pull my seat back toward the table again. Now any typical two legged ambulator would grab the front or back of their chair and scoot forward toward the table. My first reaction for the first few times was to spin my hands at the side of my chair... only to realize I had no wheels there. It is a very strange experience to find that you have become so used to a wheelchair you simply expect it to be there.

A friend at Kennedy Krieger Christina, who also uses both wheelchair and crutches, remarked how she also reaches out on the side of her seat occasionally only to find the wheels of her wheelchair missing. It was like reaching out with a limb and suddenly find it missing. I have some experience with this. It is a kind of an upgrade to loose your wheels for a set of legs, one many would make I know. Yet somehow the wheelchair has become a source of strength and mobility; more than just a mode of transport it had come to define my new life. It limited me to places with accessible ramps (mostly) but it also opened up the world when I could only look at it through a hospital room window. Freed from the confinement of rehab I got to join my family on outings, showing off wheelies and other tricks that I had learned. Moving on to crutches full time is indeed an upgrade but I still feel a sense of loss.

It may be silly to mourn for a wheelchair but I feel like it deserves a few passing thoughts. I'm not completely done with it yet but as it slowly is phased out I will remember all the places it took me to, places I didn't think were possible. It's carried me this far.

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