Wednesday, March 08, 2006

A Major Loss

I was saddened yesterday by the news of Dana Reeve losing her fight with lung cancer. I look at The Christopher Reeve Foundation and The Christopher and Dana Reeve Paralysis Resource Center sites quite often to see what's happening in the research and development world for people who are paralyzed. There were pictures posted of Dana in January, and she looked fantastic. She was still fighting but said she was feeling good. How sad for their son Will.

When Christopher Reeve had his horsing accident in Virginia in 1995, I could almost feel the pain that he and his family were going through. Our family had gone through the same situation some ten years before. My brother, who was 30 at the time, had an accident which left him paralyzed from the shoulders down, a quadriplegic. It's a devastating time, to say the least. So many questions, so many worries.

I remember when Mr. Reeve finished his rehab and was going home. I saw an interview he did shortly afterwards stating his worries about his future finances. This was a famous Hollywood actor talking about his financial worries. Can you imagine how us every-day-folk feel when something like this happens? I know from experience the costs involved in the care needed on a daily basis. It is astronomical. (Fortunately, my brother was covered by workmen's comp and his insurance company pays for most of his needs. I can't even imagine how we would have survived otherwise.) It was Christopher Reeve who called attention to this almost unknown world of paralysis.

When Mr. Reeve began to recover mentally, he wasted no time in setting up interviews and speaking engagements to increase public awareness about spinal cord injuries and he began to raise money for research into a cure. I found the following quote from a biography website regarding his hard work on this cause:

On May 3, 2002 the U.S. government opened the National Health Promotion and Information Center for People With Paralysis, known as the Christopher and Dana Reeve Paralysis Resource Center through a non-competitive cooperative agreement awarded to the Christopher Reeve Paralysis Foundation. CRPF was designated in 2000 to establish the center through a line item in the Centers for Disease Control and Prevention budget and officially named the recipient of the cooperative agreement in May 2001. The official purpose of the center is to develop and expand national efforts for the prevention of secondary conditions and complications, and to improve outcomes and the quality of life for people living with paralysis from multiple causes.

Reeve's activism since becoming spinal cord injured originally involved bringing more scientists into Neurology to more quickly discover a cure, along with doubling the budget for the National Institutes of Health (NIH), a government agency in the executive branch that is part of the U.S. Department of Health and Human Services. His experiences with his own insurance company and, particularly, the experiences of other patients he had met at Kessler led him to push for legislation that would raise the limit on catastrophic injury health coverage from $1 million to $10 million. Reeve accepted the positions of Chairman of the American Paralysis Association and Vice Chairman of the National Organization on Disability. In partnership with philanthropist Joan Irvine Smith, he founded the Reeve-Irvine Research Center in California and he created the Christopher Reeve Foundation in 1996 to raise research money and provide grants to local agencies which focus on quality of life for the disabled. Reeve's star power, along with marketing for research dollars, are reasons why spinal cord injury research has been given greater attention and more money allocated to the cause. In 2000 Newsweek noted that, "Thanks to Christopher Reeve, spinal-cord injuries-which affect 250,000 Americans-have won great attention, while mass killers like lung cancer and stroke attract relatively less." Reeve has used the contacts he had made in Washington during his years of advocacy work to lead the fight to increase funding for spinal cord injury research which, despite recent breakthroughs by scientists, had previously received inadequate financial support. In May 1996, during a U.S. presidential election year, Reeve personally lobbied the Clintons in the Oval Office of the White House where they promised him an additional $10 million, that never materialized, to be allocated to the NIH for spinal cord injury research. His efforts in both the private and public sectors have met with considerable success both in raising money and awareness of the needs and desires of disabled people.
When Christopher Reeve died in 2004, I was devastated. He died from complications from a pressure wound, a sore! My brother has these frequently and it terrified me that this is what killed Christopher Reeve. We able-bodied folks don't ever have to think about such things.

Dana continued her work as an advocate for the disabled after Chris' death. She worked strong for the cause right up until January of this year. We have lost two truly great people involved in a great cause. I can't even imagine how much good they did in their short amount of time on this earth.

If you would like to read an insider's perspective on a spinal cord injury, my brother started a blog on just that several months ago, A Quadriplegic and His Sister. He's always been a great writer and I kind of pushed him to start a blog on whatever he felt like writing about. He's caught the bug as much as me, I think he's up to about 3 or 4 different ones. I have been writing my point-of-view on his injury as his sister. It all brings up a lot of hard memories. What's that saying? "What doesn't kill us makes us stronger?" Amen.


John Ivey said...

It is truly a shame about both Christopher and Dana Reeve. I was shocked to read that the $10 million promised by the Clintons never materialized for the funding for which it was intended.

I felt the same as you did when Christopher died from a pressure sore. A pressure sore! As you said, I get them frequently lately and am currently dealing with a rather large one. (How large as it?) It's so large that medical people fly in to Washington to see it. It's so large that I can charge admission. It's ... okay, brevity aside, it could take a long time for this thing to heal up enough for corrective surgery. That's a big sore. It leaves me stuck in bed 95% of the time, but as Rosa pointed out, I like to write, and this is given me the time to do just that. One has to look at the flip side of adversity to maintain one's positive outlook on life, at least I've found that was what has gotten me through 20 years of being a quadriplegic. We have to make the best of the hand that life deals us or else we are doomed to mediocrity at the very least and utter misery of the very worst.

One thing that the Reeves did besides all of the hard work that they put in on behalf of those spinal cord injured was to leave a legacy that all can take inspiration from if they only take the time to see what these remarkable people did in the face of adversity. Their spirit truly lives on.

Rosa said...

You sound like Johnny Carson's audience, "How large is it?" You crack me up bruva.

But yes, let's hope the Reeves' spirit will continue to touch people out there.

And your big ol' sore will get better enough for the op sooner than later.



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