Martin Kace: Why I'm Doing This
I’ve been living in a wheelchair for the past 5 and a half years. It’s gotten to the point where it doesn’t bother me most of the time. I can just go ahead and live what feels to me like a normal life most of the time.
Except when I want to kiss my wife and kids. They have to bend over and strain their backs when we want to kiss. And hugging is a bit of a drag since they have to get in my lap for a real hug. Otherwise, it’s just one of those sterile cheek-hugging, pat-on-the-back things.
I’m lucky enough to be able to afford a specially adapted van, so I drive everywhere. In New York City that’s pretty unusual, but I’ve got this amazing parking permit given out only to people like me. I drive from my wheelchair and with a special remote control let down a ramp from the right side of my van. Kids think it’s cool. Usually I joke with them about it, often something to do with James Bond or Dr. Evil. I never tell them about the times I flip over onto my back because I’ve parked on too steep a grade, but they’d probably be amused by my telling them about my feeling like a turtle placed on its back when I fall. So perhaps I should share that with them.
My life is normal. The three guys who help me get in and out of the swimming pool at my gym certainly think so. They’re amazed at how normal my life is. And once they get me into my chair and the pain from being lifted subsides, we joke around just like four normal guys. Which, of course, we are. Same with my nurse who helps me get dressed in the morning and undressed at night.
I’m paralyzed from the top of my waist down. Someone felled a tree onto my spine up at my place in the country, which I’m also very lucky to have. I never sued him or his insurance company, even though it was completely his fault. I didn’t want to add to my own misery by having to deal with lawyers and insurance companies. I made enough money before I became normal not to have that extra burden.
The accident put me in a coma for a month. My brain activity was slowing to a trickle. The doctors told my wife to start researching long term care facilities for me, since I wouldn’t be coming back. She’s still not able to tell that story, and cries every time I do.
I came out of the coma, and it took me another 3 or 4 months to reassemble my personality and cognition. What a strange time that was, filled with the weird and the horrible. For the first month of my recovery, I was dead and in hell. I really believed that. I thought that I had been in a bombing incident and had run for cover instead of smothering the bomb with my body, and that this was my punishment.
Those were very hard times, and it’s impossible to express how happy I am that everything is back to normal.
Except for one thing that must be a leftover from my brain having been injured: I find myself taking stem cell politics personally.
I’m 52 years old. I’ve had a life of walking, dancing, running and jumping. I’m lucky enough to be able to be philosophical about my injury. Most of the time. It’s hard for me, though, very hard to think of the young people who would most certainly walk again if science were allowed to move forward, being stuck in their chairs while 400,000 embryos are trashed and incinerated every year.
Recent interviews with Martin Kace about his personal struggle and new campaign for stem cell research:
"Standing Tall for a Cause Dear to Him," Newsday, July 19, 2006
Radio interview with Ellis Henican on WOR: July 18, 2006
Comments (10)
It's time we take some action.
Posted by Alexander Smith | July 26, 2006 4:45 PM
I think it's ok to acknowledge, for the sake of argument, the aspects of stem cell research that scare some people and/or raise legitimate ethical questions. Those doubts about where we're headed with stem cell research are all the more reason to support it: so we can learn as much as possible about something that, make no mistake about it, is coming, one way or the other. Corporations domestic and foreign are pursuing stem cell research, as are foreign governments - the US government can do what it wants but it should do so knowing that it cannot stop stem cell research and that it is only disadvantaging itself by playing the ostrich card. And, in the meantime, it is losing for itself and for the people for whom Martin so eloquently speaks, the one and only irreplacable thing: time.
Posted by Robert Diggs | July 26, 2006 5:56 PM
This is a project that we should all get behind - not only is it timely and necessary, it is also inspirational. To come up with a positive and meaningful symbol for embryonic stem cell research will give everyone, no matter where their country is or which language they speak, a unifying tool with which to fight for their cure.
Posted by Barbara Carlile | July 27, 2006 4:13 PM
I have always supported the need for federal funding of embryonic stem cell research and lately the consequences of political obstruction have become painfully clear as a member of my family struggles with an affliction whose best hope of cure lies in stem cell research. Who knows how that life would be impacted now if we had had five intensive years of funding and in-depth research.
Thanks to all of you for creating this site and recognizing the need to band together under a powerful symbol. I'm sure the designers are using all their creativity and I will look forward to the announcement of the design.
Posted by Barbara Taylor | July 27, 2006 9:35 PM
I'm very heartened by your posts. Thank you. As you are now "insiders", let me share with you a bit of strategy going forward.
The symbol will be a unifying one, but we plan to give a good deal of attention to the dark side of the issue as well: The fact that thousands and thousands of embryos are disposed of on a weekly basis in the USA. We are working on ways to shine a light on this aspect of the stem cell world. Proponents of embryonic research have been very tepid in their mentions of this, usually using it at the tail end of sentences "...which would otherwise be discarded", is the phrase I've heard most often.
We're moving ahead very quickly, so please stay tuned and keep the comments coming.
Thanks again.
Martin
Posted by Martin Kace | July 28, 2006 3:59 PM
Martin,
I work in neuroscience (although not stem cell research) and you are so very right....no one speaks of the number of discarded embryos. I myself was unaware that the number was so high. This needs to be sung from the hilltops: 400,000 embryos were distroyed this year, and not one of them contributed to the circle of life! (By the way do you have a reference for this number, I like to include such things when writing to my senators?) Why do we allow this? Why do we not immortalize these tissues for what they can give us? Why do we not immortalize those who could potentially donate their unused embryos to federally funded research? I would much rather know that my tissue went to attempts to treat Parkinsons, diabetes, spinal cord injuries, than to feed an autoclave.
thank you for speaking out!
Posted by Zoe McElligott | July 31, 2006 1:30 AM
Good luck on this project. I hope it adds weight to the stem cell research movement.
Posted by Justin Carter | July 31, 2006 3:10 PM
Regarding the number of embryos destroyed in the US annually:
The US government does not track the number of embryos destroyed in the United States annually, so the number we have adhered to is derived through extrapolation.
The UK government does keep such records. As reported in the British Parliamentary Record, for the years 1991 to 2003, just over 814,000 embryos were destroyed in the United Kingdom, making for a flat average of some 68,000 per year. (It would be safe to assume that the number has grown from year to year, but 68,000 is good enough for our purposes)
The UK has almost exactly one-fifth the population of the United States. A simple multiplication of that number brings us to 340,000. Factoring in year-to-year growth, we arrive at 400,000 quite safely.
About 50,000 American women seek fertility treatment per year. If the average number of fertilized eggs, creating embryos, is 10 per woman, (actual numbers are higher), that yields 500,000 embryos. If each woman succeeds at becoming pregnant, that leaves 450,000 embryos.
The common claim is that there are currently 400,000 embryos in nitrogen freezer storage in the USA today. Since a similar number are created each year, and those in storage represent 3 years, on average, of embryonic storage, the number of 400,000 destroyed embryos per annum remains the most plausible.
Posted by Martin Kace | August 5, 2006 1:40 AM
Thanks Martin for the info!
Posted by Zoe McElligott | August 7, 2006 10:20 PM
CHAMPION
I wrote the following piece during the years that I was in Washington D.C. advocating for additional funding for Parkinson’s disease research. I am 51 years old and have lived with Parkinson's disease for 23 years. For the majority of those 23 years I have been promised a cure within "the next 5 years". I believe the real promise lies within stem cell research. My bank of "next 5 years" is rapidly depleting:
I want to say to the world,” Are you watching? Look closely. Don’t shy away. Don’t belittle or ridicule. Look closely because the next victim could be you.
I want to say to the world,” Are you listening? We need your help. We need you to walk for those of us who no longer can. We need you to speak on behalf of those of us who no longer can be heard. We need you to be our champion in the battle for public awareness of a disease that is crippling an important segment of our working population; the thousands of young to middle-aged Americans disabled by Parkinson’s disease.
We need for you to become our champion because the next victim could be you. If it isn’t enough that you be a champion of your peers, also know that the next victim could be your child.
Help us to dispel a myth! Parkinson’s disease doesn’t just afflict older citizens. It happened to me at 28. It caught many of my friends off guard at 4, 18, 26, 32, 40 etc. Help us, with your compassion and understanding, to have the confidence to come forward, shirking our security of invisibility, to bravely show ourselves to others. Walk by our sides as we show society that underneath the masked, expressionless faces, the unintelligible speech, the slow shuffling, shaking gait lurk bright, intelligent, creative, sensitive, loving mothers, fathers, sisters, brothers and children; people no different from you in our desire to work, create, love, procreate and live our lives with dignity. Help us to come off the sidelines of life with the opportunity to participate in life alongside you; richly, fully and purposeful.
We are so often misunderstood! We need your help; not tomorrow, next week or next year. We need your help now! We know all too well how precious life is. We want the same opportunity as you to fully experience; to actively participate in the precious event we call LIFE.
I want to say to the world, “Are you listening? Can you hear me? Do you care?”
Posted by Terrie Starr | August 12, 2006 3:28 PM