WHAT PARALYZED PEOPLE WANT
By Don C. Reed
Remember the old English legend about the man who had to find out (on pain of death) what every woman wants?
Hold that thought, please…
A few days ago, Gloria and I drove down to a paralysis support group meeting at Santa Clara Valley Medical Center. An outstanding medical facility (a Center of Excellence in every sense of the word, though always short of funding) SCVM works with paralyzed people, both during treatment and, importantly, afterward.
As every good meeting should, this one began with pizza. Everybody had two pieces of pizza (well, maybe somebody had more than his share, but nobody tattled on the former pizza-eating champion of Castro Valley High) and then we talked.
Gloria took notes, for which I am indebted. I always start off writing stuff down, but then I get excited and when I start to talk the pencil stops.
With the exception of us and one or two attendants, everybody in the room was paralyzed. Gloria always says, “Look past the chair”, which is good advice, because it is the spirit of the person which determines him or her, but at this meeting life in a chair was the common denominator, and we were all linked by that experience.
One man, David, was leaving the medical center.
Soft-voiced Richard Patterson called the meeting to order, and then focused on David: asking him, did he have any concerns, or worries about leaving the center?
I almost choked on my pizza. What a question! Four months ago, David’s body had been healthy, normal. Then, the accident, and paralysis… But here at least there were nurses and therapists, doctors and friends in chairs, people who understood, and wanted to help. There were ramps, accessible bathrooms and showers.
Now, to leave an environment designed to meet his needs, trading it for a world which basically does not care—did he have any concerns?
There was a long pause.
But Richard waited patiently, giving David the interviewer’s gift of silent attention.
At last, David said, as a matter of fact, he did have some questions about flying—what was involved, for a paralyzed person on a commercial airline?
I thought about Roman, and what it took to get him on a plane. For one thing, he had to be lifted by two or three attendants and/or me, from his wheelchair into the narrow aisle chair. Then, for his own protection, they had to strap his legs together, which I hated. He was always cheerful about it, encouraging them as they took on the unfamiliar task.
Practical tips came from all corners of the room.
The chair itself: make sure it gets on the plane! Single out an individual, get him/her involved, ask if they personally will make sure your only means of transportation gets safely stowed aboard. If the plane arrives without the chair, you are stuck in the airport. Once you are actually on board, ask another steward to go and double-check, make sure the chair was stowed. It must be securely fastened, tied into place, a high-performance piece of gear must not bounce around loose. At the far end of the flight, inspect your chair before you transfer into it; if it is damaged, complain immediately.
Toilet needs: plan ahead. Wheelchair drivers can’t fit into narrow airplane bathrooms. Restrict fluids several hours before. Catheterize (inserting a rubber tube into the urethral canal) right before the trip. If you get caught short on the flight, ask for a blanket for privacy, put it across your lap, and “cath” yourself right there. For those with no hand use, the caregiver must travel in the seat beside yours.
Tonight’s main event speaker was a scientist, who planned to ask the opinions of paralyzed folks about a project he was working on. A great idea—but at the last minute he had to cancel.
Richard went ahead anyway. I got the impression that he was pretty good in emergencies, that he would go ahead with the meeting in the middle of a flood. Sure enough, he passed around copies of brainstorming tips from the scientist, questions about the project.
Unfortunately– the brainstorming sheet was written in scientific-ese… for me at least, it was indecipherable.
If the scientist had been there to translate, maybe it could have worked—but it was full of sentences like: “MAP study felt to be unrealistic with sample size”.
I knew if Roman was here, (he was coaching his son’s basketball team) he would be asking one particular question—the same one asked every year at “Meet the Scientists Day”, at the Roman Reed Spinal Cord Injury Research Act, held at UC Irvine. The scientists explained their projects, and that was fine. But also the scientists were there to listen to the people in chairs.
“If you had control over a scientist, what would you want him or her to work on?”
Richard was kind enough to let me ask that question of the group.
As always, the comments were direct, and stimulating.
“They could develop a personal ultrasound monitor, small enough to take along, let me know when the bladder is full”, someone suggested.
As always, bowel and bladder control was the most prominent concern. No one likes to be tied down by the needs of the body, two hours (and an attendant) just to use the toilet.
Which was more important, walking or gripping? Hand use, by far.
They were of course interested in the project closest to human trials: Dr. Hans Keirstead’s work with embryonic stem cells, differentiated into cells to re-insulate those in the damaged spinal cord. They knew this was only for “acutes” (new injuries, only a few days after the accident) and only for low injuries, broken backs instead of necks. (The latter may be changing, due to new data just presented to the FDA).
They wanted scientists to focus on chronic injuries, those who had been paralyzed for a while. This is crucial.
Nobody stays acute. Every new injury becomes an old one, and that means chronic.
Suddenly, everything stopped. Above us was a thrum-thrum-thrum-thrum noise—a helicopter approaching. Someone said he hated that sound, because it meant the arrival of a paralyzed person: some one else whose life was now so monumentally challenged.
Like the young man I met here years ago, shot in a drive-by attack. Almost completely paralyze, he told me his goal in life was to be able to direct attendants how to take care of him. He could breathe and talk but that was about all. I wondered how he was doing. Was he still alive? Did he have the money to take care of himself?
The voices rose again.
Spasticity was a major concern: when the legs flail about, uncontrollably. When this happens to Roman, I am never sure what to do. Generally, I do as little as possible. If I was to tackle the legs, the violence of the struggle might pitch him off the chair. On the other hand, we did not want his foot lashing against a doorway or something. So, was this something scientists should work to prevent, or was it valuable as a form of exercise?
Dysreflexia, when nerve messages blocked by the damaged spine cannot get through, and suddenly a wave of unforeseen consequences happen, perhaps including death.
Sexual function, one person said, and a wave of nods went around the room.
And then somebody said—
Now, you cannot say stem cell politics in front of me and expect me to be silent. There are certain topics about which I must speak or explode.
Naturally, I had to brag about the California Institute for Regenerative Medicine. I told the good stuff, like that one billion dollars had already gone out in research, plus the program had already attracted another billion dollars in matching funds.
I pointed them to the website (increasingly powerful) www.cirm.ca.gov, where you could click on the “meetings” tab and find out when the next one was, and join us there.
They would be so welcome. Also necessary, if their views were to advance.
I go to as many of the meetings as I can, which is most of them, and I talk the way I eat pizza, which is to say enthusiastically—but often I am the only public person there.
This wonderful program, dedicated champions of research working to advance the dream of cure—but the disability community all too often is not there.
“Nothing about us, without us”, a disability advocate once said, and that is a terrific sentiment, words to live by—but it also puts the responsibility on people in chairs.
Suppose there is a hearing in the State Capitol about stem cell research. Somebody has to speak to the concerns of the enormous disability community.
I will go, of course, and so will Roman and Karen and two or three other stalwarts, when their health and schedule permits—but there should be dozens there, at least.
Roughly one American in five has a disability, either physical or mental—and these folks have families—when you stop and think, that’s pretty much everybody.
If the disability community was ever represented in anything like our true numbers, the government could never ignore us again
This ridiculous fight about health care would have been over before it began—like, duh, public option, that is a middle of the road option, not extreme—of course we will have it!
It took so few people to move a mountain. If just the people in this room—maybe thirty– worked together, there was no limit to what they could accomplish.
I told them about Texans for the Advancement of Medical Research, (TAMR) and how a group of people no larger than this group had fought back against the anti-research forces—and had done so for years. Texas has a three billion dollar cancer program, and as we get closer to cures, it is only right and proper that some of that money should go to stem cell research. The opposition worked hard to deny that, putting in a clause that no embryonic stem cell research should ever be funded—but TAMR fought back, and left that door open to the future. Texas is still the most conservative state in the nation, probably, but one day they will get tired of denying their community the hope of cure. When they do, it will be because of a few patient advocates, themselves with health problems, but they would not sit home and be left out of the equation.
Everybody here had the paralysis mountain to climb, in addition to all the other problems everyone faces. It is tough—extremely tough—for even the most dedicated wheelchair warrior to travel.
But remember the story of the man who had to find out what every woman wants?
Finally, he met up with an old woman, bent and wrinkled, who said she would tell him the secret—if he promised to marry her. Seeing the alternative was execution, he said yes.
And she whispered the secret in his ear. Every woman wants–
Power. They want the same thing every person wants: control over their own destiny.
It is the same for people in chairs. Nobody wants charity, but everybody wants to control their own life—and that cannot be achieved individually.
Does the opposition fight alone? Never.
And neither should we.
The only way to advance is to organize.
Example: Remember when HIV/AIDS was considered an automatic death sentence?
What if the patients had just accepted what the doctors told them, that there was no hope? Nothing against doctors, of course, but they are mechanics of the body. As with an auto mechanic, there is more for a doctor to know than they can ever learn in a lifetime; they cannot be expected to know what scientists spend their own lives learning as well.
The people with HIV/AIDS got tired of being left alone to die, and so they got vocal. They and friends and family organized, and made noise systematically, until all of a sudden the reaction was: “Oh, no, here they come again—we better do something!”
Today, while there is still as yet no cure for HIV, there are medications available, and our friends have a chance at living– because the HIV/AIDS community got active.
We face huge decisions: like should we put protections of stem cell research into law? If not, what is to prevent an anti-research President (as I believe a President Sarah Palin would be, for instance) from doing damage? When Senator Diane DeGette and Representative Mike Castle come up with their new version of the Stem Cell Research Enhancement Act, (twice vetoed by former President Bush) we must get that passed without delay.
Huge example: the National Institutes for Health (NIH), is the ultimate source of research funding in our land. If we want the scientists to have the funding to fight for cures, the National Institutes of Health itself must be funded.
President Obama supports the NIH, bigtime. But we need to let him know we back his efforts. If we do not, there is a distinct possibility the NIH funding may be savagely cut. Remember, every leader works on consensus. He/she must balance the competing interests. And who are the competing interests? These are the folks who step up to the table and demand to be heard. If we do not speak —we will be ignored.
Want something you can do right now? Here is a message from our friends at Research!America, whose sole purpose is to advance the research which will save lives and ease suffering. (They of course have no connection to any of my personal opinions; I just support their work, and so should every American family who wants the best medicine science can provide.)
I clicked on the following, which is set up so you can contact the President: took about 90 seconds to go to the website and send an email they have waiting there for you—so easy!
Thank President Obama for Reprioritizing Science and Health
Urge Him to Fulfill His Commitment to Research
During this season of thanks, join advocates nationwide to express your gratitude for the recent revitalization of research. The American Recovery and Reinvestment Act has invigorated the research community after years of diminishing budgets for the National Institutes of Health.
Please contact President Obama now to thank him for his recommitment to science and urge him to continue to make research a priority in Fiscal Year 2011. It is critical to strengthen the scientific and economic momentum generated by ARRA by making NIH’s new research capacity permanent.
President Obama will decide what funding to recommend for NIH before the end of the year. Patients, scientists and other research advocates across the U.S. must demonstrate our collective support for his innovation strategy by sending a strong call to robustly invest in NIH. Write to President Obama today!