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.

Being Grateful for What You’ve Got

Some days, it’s hard for me to hang out at the ASAP.org forums because there are so many posts from people who grieving over what they cannot do, what they’ve lost. Most of these folks are relatively new to the worlds if illness and disability, so their need to mourn their old lives is a natural part of the process. In my head, I get al this. But in my heart, I sometimes have trouble being supportive or even holding my tongue when there is post after post focusing on what you can’t do anymore, and none that expresses gratitude for all you can do.

To be honest, it’s especially hard for me to relate to people who are so much better off than so many, yet who feel deep down in their hearts that they’re suffering terribly. Don’t get me wrong -- I feel bad that you have a syrinx that has affect your life and brings you some pain. But it’s impossible for me to get all worked up over the fact that your pain is only bad after you play basketball with your kids, or participate in your Wednesday night soccer league. And it doesn’t help that this “severe” pain of your can be managed by an Advil and a good night’s sleep, or that you won’t even need to stay home from work the next day.

I want to be supportive to these people -- I really, really do. And I try.

But to often, their posts -- as necessary as they are to helping these individuals come to terms with their post-disease lives -- do little more than set my own acceptance of my life, and my limitations, back.

I work ever single day to be grateful for what I have left, instead of mourning for what I have lost. Some days it’s easier than others. These are the days when my pain levels are at their lowest (the pain never goes away, but sometimes it fades enough to be little more than background static), my husband is at his happiest, my kitties are being the most loving and cute, and the island looks its best. At these times, all that matters is that I am here to enjoy it with the love of my life, and to take in all that being alive has to offer.

Every now and again, it’s just not possible, and I break down and have a “poor me” day when I cry, whine, and complain about how it’s so unfair that there are so many bad people who escape unscathed while so many people like me, and several friends (Janice, this means you) who do their best to do good are burdened with severe disability and unrelenting pain. And it’s on these days that I lose my patience with the people who don’t seem to understand how relatively well off that they are.

I‘ve learned to be good at biting my tongue when it comes to this type of grieving. What triggers the need may be something as casual as a remark about how horrible it is that they couldn’t do something that‘s on the frivolous list (like getting a seaweed wrap), or as serious as people who seem to be disease shopping -- the kind who are always looking for reasons to believe they have a condition with which they have already been told they don’t have. Either way, these are just reminders of how much I have lost, and as awful as it is to admit, can get to me and distract me from my gratitude that I am not worse off than I already am.

I hope that, in time, the folks who are at this point in their grief over losing the life of a person free of chronic disease will reach a point where they, too, can be grateful for the things they still have, instead of looking only at what’s gone. Until then, on my good days I’ll try to help them see that life is not over just because you need to do some things differently -- and they there’s a lot to be grateful for not matter how bad things can get. And on my bad days, well, what are a few more teeth marks in my tongue?