Ramblings on healthcare, medical education, and life with a spinal cord injury
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I’m Just as Uncomfortable as You

Being on a spinal cord injury (“SCI”) ward at a top hospital like Mount Sinai makes it easy to forget how people see those in a wheelchair.  Everybody around you is either a patient or support staff that specialize in handling this type of injury.  I’ve made a good number of friends here, and while heading down the hall I’ll speak with or at least smile at the other patients.  Everything seems easygoing, until you’re faced with something that makes you so uncomfortable that you don’t know how to respond.  Even here.

As somebody recently bound to a wheelchair (I am loathe to say “bound by,” since I don’t want to view the chair as something limiting), I know that people in public typically have no idea how to react to somebody in a wheelchair.  As a result, their actions range from kind to comical to borderline absurd to borderline offensive.  But I have found overwhelmingly that people almost always tend to be kind.  Even though they tend to over-compensate in their response.

I can see why people would be unsure how to act if they’ve never been around someone in a wheelchair.  Before the accident, I certainly would not have had any idea.  I’m sure I would have tried to open every door for them, hold things for them, move things aside, and generally… over-compensate.  Now on the other side, while I appreciate people doing things like that, at the same time it bothers me because the idea that I need help opening a door focuses on my injury and suggests that I actually need help doing those things.  And I know I am far from alone in these feelings.

I don’t expect people to know these things.  People aren’t mind readers, and having never been in my position, how could they know how I feel?  But I have some idea how they feel.  Uncomfortable.  It’s uncomfortable to deal with a person that you do not know, that has a disability that you do not know.  It’s a lot of unknowns and the more unknowns, the more uncomfortable people generally feel.

My friends have all been phenomenal when visiting.  Although it’s been obvious that a couple have been shaken up a bit or haven’t known how to react, most have not missed a beat and realize after a few seconds that I’m the same person I was before.  And from then on, everything is again normal.

So where does my lack of comfort come in?

I’ve written about my injury and functionality I have versus what I should have in the past.  At this point I still can’t walk, but I continue to gain increased control of muscles in my trunk.  When I got here, I had control and use of my fingers and hands – but they were a bit awkward at first.  My writing looked even worse than usual, my typing was clumsy, it took all my effort in both hands to change the channel on the remote control, and I couldn’t use a pair of chopsticks to save my life.  That’s all back to normal now.  So I don’t really know what it’s like to not be able to feed myself, or to be unable to answer the phone, or to not be able to scratch my nose when it itches like crazy.

After just over two months here, I was given a new roommate today.  I’ve been told my last roommate needed to be in his own room due to a medical issue, so we all played musical hospital beds.  My last roommate was tetraplegic – the correct and now universally accepted term for someone who cannot move all four limbs, the US being the one and only place that wasn’t already using it.  He needed to be fed, needed to be washed, and basically needed help doing everything.  We were cordial to each other, but we never talked more than a few words at a time.  But I didn’t know when I first shared the room with him that he was tetra – since we didn’t talk or interact much and he was sitting up in a chair, I had no clue what his injury or functional levels were.  By the time I figured it out and heard his story, things were already comfortable enough.

Interesting fact: the determination of whether somebody is para- or tetraplegic has absolutely nothing to do with whether or not they can move two or four limbs.  It is based upon the level of injury.  Damage to the spinal cord above the first thoracic vertebra makes the individual tetraplegic; damage at T1 or below makes one paraplegic.  Usually, damage in the cervical region correlates to the loss or affect of functionality from the neck down.  But since it doesn’t have to, there are quite a number of people around who are “tetra”(still commonly called quad) that have no trouble with their upper body. Go watch Murderball sometime to see what tetras are capable of when you add a bit of crazy.

And yes, I am classified as tetraplegic and not paraplegic.

Back to my roommate situation.  Today was different.  When I came into the room, my old roommate was no longer in his familiar chair.  I had a new roommate.  And there was no mistaking his severely limited abilities.  He was laying on a very unique, atypical hospital bed with all kinds of equipment connected to it.  All of it focused on ensuring he had no issues with pressure building up, and on helping his circulation.  I was stopped dead in my tracks.

With all of the people I’ve met here and the different injuries I’ve seen, I had no idea how to react.  We started talking, and he’s certainly nice enough.  One of the first things people talk about here is their injury – how it happened, what level it is, and whether or not it is complete.  He told me he’s been injured for twelve years, C5, he’s completely paralyzed below the neck, and he’s in the hospital for a pressure sore that got out of control.  They’re serious business, and it is true that a pressure sore is what killed Christopher Reeve.

He asked about me being able to use my hands, and what I could and couldn’t do.  I felt guilty saying that I could move my hands.  I didn’t want to tell him that I’m gaining functionality and strength back after working with the therapists.   I started trying to downplay the positive things I’ve been able to do here by talking about how I couldn’t do certain things when I first arrived.  I felt bad for wheeling by him several times, as if I was showing off what I could do.  I felt uncomfortable.

I started thinking about why I felt so uncomfortable, and I realized that guilt and uncertainty about how to act must be a big part of why so many people act awkwardly around people in wheelchairs.  I mean, if it even makes me feel uncomfortable after having lived in a chair for several months already, I can’t imagine how it would feel otherwise.

So I think I’m starting to understand your discomfort.

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