I’m not the MS guy

cropped-avatar200.jpegMany years ago, my daughter had a heart transplant – a sudden and at times terrifying journey. It all worked out remarkably well, better than we dared hope. After her surgery, I thought it might be a good idea to have her sit with a therapist to talk about any emotional issues she might be struggling with. In the end, she didn’t really understand what she was doing there, and the take-away was that she didn’t want to be The Heart Transplant Girl. She just wanted to be like everyone else.

In much the same way, I don’t want to be The MS Guy. Multiple sclerosis persists intruding in my everyday, so there is only so far away from it I can get. But my inbox is filled with updates and newsletters and new blog posts and comments from various forums I participate in. I feel somehow obligated to read it all, as if it is a responsibility, part of taking care of myself. I could spend every minute of the day reading the latest, and following links, and investigating new ideas and therapies. I feel pulled to be an advocate for MS, for disability issues, and as a member to The Disabled Community. And on and on. I wind up not only dealing with my own MS body and brain, but I border on obsessing about MS outside of myself. As if I don’t want to miss any tid-bit of important news. It gets overwhelming. To the point where it begins to crowd out other things I’d like to be thinking about.

So although I’ll never be able to forget that I have MS (the MonSter), I try to find ways to move it at least to a side burner on the stove, if not a back burner. And perhaps for a little while each day, to not be The MS Guy.

Does diversity include disability?

The LA Times recently published “A list of 100 people in Hollywood who could help fix the Academy’s diversity problem.”  The list is replete with people of all colors, races, creeds and gender identities. The writers of the list said they spoke with dozens of “Hollywood insiders” to come up with the list. It seems that they didn’t talk with any of the 650 million in the largest minority group in the world. Out of 100 insiders, there is not one with disability. Could it be that there are no Hollywood insiders with disability? No wonder all we get are able-bodied actors playing the parts of people with disability, and able-bodied writers writing about disability.

When I watch TV or a movie, I see plenty of diversity in skin color and gender. But I very rarely see anyone with a disability – a person like me. When I do, it’s usually an able-bodied actor taking the role. Yes, there was R.J. Mitte in Breaking Bad, and well done at that. But remember Arte in Glee? Blair Underwood in the ill-fated Ironside? DJ Qualls in Legit? In the remake of “Roots,” how many of the African parts went to white actors in blackface? I’d put my money on “none.” How long would women – or any of us –  put up with every female role being played by male actors in drag? Not long.

I don’t need a feature film about me. I don’t need a TV show about me, although that would be nice. All I want is to see myself reflected on the screen. Imagine “Friends,” where Phoebe is in a wheelchair. The show need be no more about the wheelchair than it was about her quirky music. (Remember “Smelly Cat?”) She’d be exactly the same character, except she’d be in a wheelchair, played by Teal Sherer, of “My Gimpy Life” fame. That’s all. I’d be fully satisfied by that.

(I will admit that I am not a consumer of current television programming, so I may well have missed something. Correct me if I’m wrong.)

And while we’re at it, remember, Corporate America, people with disabilities go to McDonald’s, they buy cars, and engage in sports. And there’s a heck of a lot of us. Just sayin’.

If any of my millions of Faithful Readers have any expertise in, connection with, or inclination towards screenwriting or media production, drop me a line.

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Someone posted a video on Facebook this morning of some ripped athlete guy showing off, doing push ups and pull-ups and weight lifting and such, with his wheelchair strapped to his legless body. You go, guy!

What inspires me is some ordinary schlub like me who wakes up in the morning feeling exhausted, beaten, maybe hopeless or helpless, who nonetheless gets out of bed and faces the day. You go, guy.

I’m down here!

iuHugging someone in a wheelchair is not all that different from hugging someone…not in a wheelchair. It doesn’t have to be like in the picture (the only image The Google was able to offer me). Although I bet that was one of best hugs either of these two ever had. It’s really pretty simple, if you think about it.

Just come down to my level. I’d come up to yours, but you can see how that’s not going to work. Pull up a chair or kneel down, squat if you have the leg strength. Hell, sit in my lap. We just need to be at eye level – the same as you would do if we were both standing. The rest should be self-explanitory.

That protocol also applies to holding a conversation with a person in a wheelchair. Craning my neck, trying to bridge the three feet between your height and mine, is uncomfortable. Neither of us wants to be in this physical relationship, me way down here and you way up there, but there’s nothing I can do about it.

I realize as I write this that I have not done my part in this dance. I have not suggested to the people who awkardly bend down to give me a hug that there is a better way.

So I’ll ask. Come down here and give me a hug. We’ll both be better off for it.

No Mind

I feel like I have plenty to say lately – I have a growing list of prompts and drafts and notes to myself, lots of great topics – but when I sit to begin putting actual words together, I feel stumped. I don’t know what it is. I blame the easy scapegoat of MS for robbing me of my ability to write coherently. I’ll keep at it – god knows I have plenty of time.

I was awake all night – again – last week, so I sat up, took my phone camera and made this.898

There’s more (if you want to see) at Captured Light.

I have also re-discovered My Counterpane, a vibrant online community of MS people – people who immediately know what we’re talking about. Wander over and introduce yourself.

Take a spin in my head

I wrote this after being rudely awoken, far earlier than I would have liked, by my near constant companion Jimmy.)

How about this. You wake up in the morning feeling like someone has been pounding on your left triceps.  If you’ve ever climbed a big mountain or done a long run or trail hike, you might know what this feels like. Except, this morning, you have the pain without having enjoyed the climb that caused it. It’s just there. No reason, it just aches. There’s medication, a whole bottle of it, right there beside your bed, that might, in an hour, dull the pain. Or it might not, no way to tell. Either way, as a side effect you will spend the morning in a fog – dizzy, weak, uncoordinated, disoriented. And desperately tired.  You get woken up too early every single morning with a variation of the same pain. It might be the other leg, or your lower back, or one shoulder or the other. Pain is pain, am I right? Thinking clearly is over-rated ayway.

Tell me – would you reach for the pill bottle, or decide to ride out the pain, which will probably go away on its own eventually. Or it might not. Give it some thought, if you can with that ache in your leg.