Today, wheelchair activists, family and supporters are in Washington, D.C. to urge establishment “of a clinical trial network” and adequate funding. Press release: Go to this Yahoo link, and vote it up — at bottom of page. (From the diaries by susanbhu, Kate’s and her husband’s story …)
Know what takes guts? Traveling all the way to Washington DC when more than half of your body parts don’t work right, or don’t work at all. I’m saying, traveling from towns in Colorado, and Florida, and Minnesota, and Oklahoma to stay in a hotel where you may or may not be able to get into the bathroom. Talking face to face with senators, trying not to blow this, your one 4-minute chance to be heard. More below . . .
Know what takes guts? Demanding attention when you know perfectly well that the very sight of you in your wheelchair with your shrunken legs and rounded belly and curled paws for hands make people squirm. Speaking on a stage next to people you’ve only seen on TV. Doing all this on the off chance that the press might pay attention, which might galvanize some politicians to pass a bill they’ve been holding in committee for years, which might mean that scientists will be able to bring therapies to trial sometime in your life. Knowing the odds are long, and you’re going to look like an ass, and doing it anyway.
It takes deeply radical guts to be paralyzed and not give a shit. It takes a leap of faith from here to heaven to say, finally, what the hell.
Ever since my crazy-ass, techy-geek, skiing-fool husband broke his neck, I’ve been part of an online community that is just teeming with such gutsy people. We have all the usual internet conversations–about elections, and books, and the right way to make bread pudding, and what it means to be Christian. We also discuss current research; most of us know a great deal more about cutting edge neurology than our doctors ever will. We help each other figure out medical problems: what is that purple spot on my foot? Why does my daughter get spasms when I try to move her legs through a normal range of motion? How can I stop getting urinary tract infections? How do I build a standing frame? Has anybody managed to have an orgasm with my level of injury?
We also know about death. Everybody remembers when Christopher Reeve died at long last from complications of his spinal cord injury. Nobody knows about Martha’s husband, or Reifer’s son, or a half-dozen others I could name whose deaths were abruptly reported to the group. I tell you, it’s a gutsy person who can trouble himself with the politics of advocacy when that shadow is so deep and dark and near.
Today, though, a couple of hundred of my craziest friends are in Washington DC. They’re staying in that hotel; they’re speaking to senators and representatives and aides, and, hopefully, the press. The rally is scheduled to begin in an hour. Dana Reeve, a woman who knows a little about courage, is speaking. Next to her will be a deliciously unorthodox person named Betheny, who is largely responsible for making this happen.
There’s no better way to describe Betheny than to give you a sampling of her own words, but keep in mind as you read them that this woman can barely walk. Her balance is so bad that she has to shower with her eyes open. She’s just a smart, sassy creature who took a bad hit and kept going. At our website, she’s the volunteer moderator for the forum on “Relationships and Sexuality”, which is, believe me, in a whole `nother category of gutsiness.
Here she is talking to us on the forums about the plans as they unfolded at rocket speed:
1/12: (Exactly three months ago, the day the rally idea was first floated) Can you see us parked patiently in front of our state Rep’s offices, demanding to be heard? We’re so obvious in our chairs anyway. Sit-ins till arrested, hehehe. I don’t want to be arrested but I love being a pain in the butt.
1/18: (About Chris Reeve) We expected him to carry us on his shoulders.
1/20: (About Robin Williams, after posting a letter inviting him to come to the rally, which at that moment had no schedule, site, or attendees) One never knows, maybe he has a soft spot for disorganized gimps. If so, we’re golden.
1/22: Who is invited? I want to be loud and clear here. AB’s, wheelers, the neighbor who is tired of mowing your lawn for you, your kids, your parents. I’m not the boss but I feel strongly on this. It is too hard for a lot of the wheelers to participate, unfortunately. I’m grateful for every AB that cares to represent on of us.
2/16: Cover me, I’m goin’ in!
3/1: We’ve held the speaker list to 5. This is a difficult part of the planning . . . I remember thinking we’d maybe sing the hokey pokey or something. I promise to keep my part short, LOL: “Good mornin’, y’all. I’m Betheny the Relationships and Sexuality maven. (Deafening applause. An officer holds all the overwrought young men off my person w/great difficulty as he calls frantically for backup rofl). I’m proud to be here and honored to present . . . ” —How’s that? After all this work, I am glad I’ll be able to look out from the stage, even tho the idea scares me spitless. Should be one of life’s sweet moments.
Indeed it should. If you reading this feel so moved, today would be a good day to call your own legislators and tell them you support the three goals of the rally: passage of the Christopher Reeve Paralysis Act, $300 million dollars to fund a network of clinical trials so that therapies already known to be effective can be tested, and priority given to the cure of paralysis at the National Institutes of Health.