September is Spinal Cord Injury Awareness Month. As I write, Christopher Reeve's wheelchair is in transit for a special exhibition to help raise awareness of paralysis. Such a powerful icon, Superman's empty wheelchair.
The first time I rolled into the offices of the Christopher & Dana Reeve Foundation, I was struck by a couple of things. First, the Foundation is housed in such modest space. It's not a posh, flashy (expensive) suite designed to awe visitors and potential donors. It's simply working offices.
Next I was awestruck by Christopher's chair ensconced in the lobby, silent and insistent.
Beautiful images of Chris and Dana fill the space and you feel them both there in that spare, still lobby; their drive and philosophy always so very present in the day-to-day operations of the Foundation that bears their name. Sitting in that space, touching Chris' chair and comparing it to the relative minimalism of mine and all that signifies was one of those reverential moments that I carry with me still.
I am of the age that I remember Christopher Reeve as an actor and an athlete first of all. Sitting next to his chair and based on its size, I fully appreciated Christopher's stature: he was a tall man with broad shoulders. As you examine the wear marks in the padding where his arms rested day after day, when you take in the ventilator tray on the back, when you note the structure carefully crafted to support and protect his head and neck and the delicate sip and puff mechanism he used to navigate, you begin to appreciate the full extent of his injury.
Chris could not brush an errant hair from his own eyes yet he worked tirelessly to advance the notion of cure research and better quality of care for the people living with spinal cord injury today. Chris made a point of calling those newly injured and offering encouragement and hope. Prior to Chris, hope for the future wasn't really on the menu. Even in those days, Chris' work was controversial. There were many who disagreed with his approach and even publicly protested his events. Yet he continued despite the few loud voices of dissent. And so must we.
Christopher Reeve died less than a month before my own injury. I never knew him in life as a peer. I've heard the second-hand stories; some from those who have co-opted his legacy for their own purposes. I've heard from those who tell me with some false authority what Chris would or would not think about the current state of research and advocacy for both care and cure.
I am fortunate enough now to count among my friends and allies many who directly worked with and loved Chris and Dana. Listening to the first-hand accounts from Maggie and Michael and Susan and so many others told with a mixture of affection and respect and sorrow, I believe Chris and Dana would be proud of the work that continues in their name.
I've learned that Chris and Dana, like the Foundation that bears their name were brave, generous, bold and forward thinking; and also imperfect. I've learned about the missteps that were the result of the naiveté of this family and foundation newly injured and new to nonprofits. I've learned about the misunderstandings and missed opportunities that were the result of the profound shock and grief of losing friends, family members and founders, Chris and Dana within less than two years of each other. I've watched this family and foundation heal, refocus and recover from fate's cruel sucker punch.
It's taken time. The Christopher & Dana Reeve Foundation is at heart a family of allies that encompasses not only Chris and Dana but each of us who lives with paralysis. I've watched the momentum gather as each broken soul has returned home to the fold. I'm intrigued by the bold new ideas growing every day at the Foundation. I'm encouraged by the urgency, clarity and humanity I see embodied by every person associated with the Foundation. Although my very favorite pastime on the planet is working to raise the blood pressure and aggravate the ulcers of Reeve Foundation president, Peter Wilderotter, I gotta say, I trust him and his leadership. (Peter, this is your one free pass with me, savor it.)
Where are we and where do we go from here? There is still so much work to be done. The over 5.5 million of us living with paralysis in the US need more. We need better treatments today for our secondary complications. We need better public access, jobs, housing and educational opportunities on par with our able brothers and sisters. And, we need our cure -- yesterday if at all possible please.
There is suffering. There is true misery and there is unfathomable loss in this community. We seem to be more fractured than other advocacy communities. We seem to hold onto our grievances and misunderstandings harder than these other advocacy communities too. While few of us are experts in neuroscience, we can each take measures today to make a difference.
First, we need to define what it means when we talk about a cure. It's not one thing or one lab or one researcher, there are many pieces to this puzzle and the research that can improve your TM may not impact my traumatic SCI. Because each of our injuries/illness is different, a treatment that improves function in one group may not work in another.
Most agree our “cure” will be a “cocktail,” a combination of treatments, surgeries and therapies that will improve our function and quality of life. Will it take each of us back the body we lived in the split second before our paralysis? I cannot see that outcome in the immediate future of science as we know it.
Next, rather than tearing each other apart, maybe we could cooperate. There is no one answer at this point. We need both care for today and cure for tomorrow. We need work on motor function and BBS. We need to consider both chronics and acutes. We need to treat each other with a little faith and kindness and patience. We need to revisit old hurts, misunderstandings and jealousies in order to move past them.
If I was in charge of the magic wand, we would make a bold move to mitigate the most devastating aspects of paralysis right now. Within this community, there are people who are suffering, truly suffering today. We need to take a deep breath and plunge into the murky uncertainty with therapies that can mitigate our injuries until the holy grail that is our cure is finally found.
We cannot wait for the perfect cure when there are measures that can be taken today to move us forward to better quality of life. We should never take our eye off of the need for restorative treatments that allow us to move past these damned wheelchairs, but to continue to allow people living with paralysis to sit here waiting for the ultimate treatment is just cruel.
You too can act now. You can donate to fund research by texting REEVE to 20222, by doing so, $5 will be charged to your next cell phone bill.
Christopher Reeve's empty chair. One year soon, I would like to see a line of empty chairs in that exhibit. This time with a sign that tells the viewer “Gone Dancing.”
That's the future Chris worked for. That's the future we each can work for.
© 2013 Jennifer Longdon |
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