No, I’m Not Okay!

There’s nothing covering my left shoulder blade except a few paper-thin layers of skin.  Twenty-some odd years ago, a plastic surgeon moved the trapezius muscle that’s supposed to be there over to the center of my neck/upper back and used it to cover an incision that wouldn’t heal.  In its place is skin taken from the back of my left thigh. 

With no protective padding of any kind, that area is, to say the least, exceptionally sensitive.  Even the lightest touch hurts -- it feels as though the bone itself is being prodded and poked.  Putting pressure on the scapula is so excruciatingly painful that it nauseates me.  If the pressure lasts too long or is caused by a solid, unforgiving surface, the grafted skin will open.

Now picture this scene.  The plane has landed at my destination, and I’ve just transferred from my seat into the ancient, high-backed aisle chair -- the one with that’s got nothing but grey metal above the thinly-padded back rest.  As soon as the last strap is buckled, the airline employee who brought the hard, narrow chair to me tips it back 45 degrees, slamming my unprotected shoulder blade into the bare metal of the backrest.  My eyes fill with tears, and I utter a sharp cry as the pain-induced nausea engulfs me.  The longer he keeps me flat on my back, the worse things become for me. 

I try to let him know what the problem is, to explain that this position is unacceptable because it makes me feel as though a butcher knife has been plunged into my shoulder blade and is slowly being twisted around.  But he’s already decided that the tears and the sounds I’m making are because I’m scared, so instead of listening, he’s busy replying to what he thinks I’m going to say.

“You’re okay, you’re okay.  I understand.”

“No, you don’t understand!  I’m in pain -- severe pain.  I can’t stand to be tipped back on my…”

“I understand.  You’ll be okay,”

It infuriates me when TABs (people who are Temporarily Able-Bodied) do this.  What they intend as reassurance is actually nothing more than thinly veiled condescension -- by disregarding what I’m telling them, they’re substituting their judgment for mine and sending a clear message that I couldn’t possibly know what I’m talking about. 

I wish I could say that not being listened to was an infrequent occurrence,  but that’s not the case.  There’s a widespread perception among the general public that the wheels that I use to get around are a substitute for my brain instead of my legs.  Not only do people stop listening to you when you use a wheelchair, they also stop talking directly to you and speak to your companions about you.  When this happens, it explains a great deal about how and why people with disabilities became known as “invalids.”

Sadly, it’s not just uneducated strangers that decide they know better than I do what’s good for me.  I’ve had friends and family members to me not listen to my objections that I wasn’t in the right position to transfer.  Doctors and nurses have sworn to me that some medical device or another that I knew to be malfunctioning was working just fine.  And co-workers have told me that I really didn’t need to take a break or be on those pain meds if I would just push myself a little more. 

Having been an almost-TAB for many years, I know that my protests that I’m not okay would never be summarily dismissed the way they are now. At the first sign of my distress, everything would stop, and those around me would work with me to make sure everything was all right before proceeding.

I know I’ve changed since then, but those around me have changed too.  The difference?  It’s my body that’s changed, but it’s their attitudes toward me.  And you know what?  The way it makes me feel is not okay.

I only wish they would listen when I tell them that.