The Great Fight

con·tem·plate
Pronunciation: \ˈkän-təm-ˌplāt, -ˌtem-\
Function: verb
transitive verb 1 : to view or consider with continued attention : meditate on 2 : to view as contingent or probable or as an end or intention intransitive verb : ponder, meditate
synonyms see consider
Etymology: Latin contemplatus, past participle of contemplari, from com- + templum space marked out for observation of auguries
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I’ve contemplated suicide lately. Twice during this period I’ve come scary-close to surrendering to that siren call. Unrelenting pain accompanied by myriad life issues and social isolation all came together to make me wonder if there was any reason to go on. I don’t want to die. I just want the pain and sadness to stop.

It’s no wonder that suicide is the leading cause of death within the first three years of spinal cord injury. There is so much loss in the beginning. Loss of health. Loss of self. Loss of freedom and future. Loss of friends and for some, loss of family. All the health complications pale in comparison to the struggle to come to terms with sudden, unalterable disability lived within this alien new body.

Stigma exists in our society for those who commit suicide. People who do so are seen as weak or selfish. That’s easy to say. Try living this life before you judge. I am amazed by the number of people who tell me they don’t think they could live paralyzed. It’s ironic how many of these same people minimize my struggle with this decision.

I’ve been offered anti-depressants to get through. To blame my thoughts on depression is to trivialize the reality of my existence. Life with severe disability is hard. Sometimes quality of life trumps quantity of life.

I find near-total isolation of my SCI is the most daunting aspect. So many barriers exist that keep me from people. Getting inside other people’s homes is nearly impossible if the home has not been modified for a wheelchair. Bathrooms? Forget it. Same with meeting in public places; parking, accessible space and my unique bathroom needs make going out difficult.

A month ago, well after I started wonder if it still made sense to be alive, I was stunned to learn that another person within my spinal cord injury community chose to end his life. Ozy was a young man at the start of a big life when fate intervened. He was on a motorcycle trek through Mexico when a chance encounter with a wayward donkey caused a crash that left him a high-level paraplegic. Ozy went on to law school and started rebuilding but never found resolution. Ozy was a thinker, a doer and a writer. Among the last of his writings that I read is this…

"I expressed myself with my body! I showed joy with my body! I was a fighter and a wrestler, a streaker and skinny-dipper. I was a runner, a jumper, an expert weight-lifter, and yoga master! An adventurer! A thrower of axes and a hefter of logs. A fisherman who wrangled with sharks and octopi. A wearer of giant pumpkins! I was so much fun! A hearty embracer of friends. A climber of trees and of mountains. I loved to throw big rocks! To dig and build and move heavy things around. I was so strong! I loved to play with children! I would catch my cousins in my arms, all three at once, and run them in circles, or bear them proudly around on my shoulders."

Ozy and I shared an on-line community. We didn’t know each other beyond it. Upon learning of his death, our community pulled together and comforted each other. While many would not have made Ozy’s choice, almost everyone understood how he came to that decision. Since his death, there have been others who have come forward to say that they had either made an unsuccessful attempt or were also contemplating suicide.

From another friend (with permission)

Thanks for your post on suicide. I've been struggling lately and Ozy’s death has affected me. I didn't even know him beyond his posts. It's "the straw that broke the camel's back" On top of everything else, his choice sits in the back of my brain. I'm not always conscious of it but it's there and it colors all my thoughts. I hope it passes harmlessly. I was chatting with ***** and told her that it's not the SCI so much; I can live with that. It's the injury+ financial woes+ physical complications squared by estrangement +isolation + Ozy's choice = suicidal ideation. How does one talk about this outside of our community? I find that no one else gets it.

I acknowledge my injury. I understand its scope and (current) permanence. I REFUSE to accept it. I refuse to believe that I will live the next 20, 30, 40+ years in this chair.

The next time you’re tempted to tell me how “brave” I am or how admirable that I’ve gone on with my life, think twice. The struggle is great even if, from your perspective, it is invisible.

Those Damned Forwards

Anyone who knows me well knows that I HATE HATE HATE those syrupy sweet forwards. I am not going to send anything to 10 friends to earn good luck or to wait breathlessly to see if you send it back to me so I know you care. I am a misanthropic curmudgeon for sure.

More often, if you send me one of those forwards, you’ll get this in return.

Today, however, I received one of those friendship poems that speaks to me in a visceral, honest way. I feel that I must share this one this time because it is the essence of me.

Are you tired of those sissy "friendship" poems that always sound good, but never actually come close to reality? Well, here is a series of promises that actually speak of true friendship.
You will see no cutesy little smiley faces on this card- Just the stone cold truth of our great friendship.

1. When you are sad -- I will help you get drunk and plot revenge against the sorry bastard who made you sad.

2. When you are blue -- I will try to dislodge whatever is choking you.

3. When you smile -- I will know you are plotting something that I must be involved in.

4. When you are scared -- I will rag on you about it every chance I get.

5. When you are worried -- I will tell you horrible stories about how much worse it could be until you quit whining.

6. When you are confused -- I will use little words.

7. When you are sick -- Stay the hell away from me until you are well again. I don't want whatever you have.

8. When you fall -- I will point and laugh at your clumsy ass.

9. This is my oath.... I pledge it to the end. "Why?" you may ask; "because you are my friend".

Friendship is like peeing your pants, everyone can see it, but only you can feel the true warmth.

Send this to 10 of your closest friends, then get depressed because you can only think of 4.

So there....

Valentine's Day gift funds SCI research

Looking for a Valentine's gift? Please consider a visit to Whim. http://www.whimdesign.blogspot.com/

Not only is the Have a Heart bracelet pretty but 50% of the proceeds go to the Reeve-Irvine Research Center where scientists WILL cure paralysis.

Have a heart, buy a bracelet.

FDA Seeks Input Re: Human Clinical Testing

The FDA is accepting electronic comments regarding human clinical testing of stem cell therapies. LINK
I beg you to ask the FDA to do everything within their power to expedite stem cell therapies for compassionate use. Your comments must be posted by close of business on March 26, 2008. Following is my submission and below that is more background on the FDA request for input.

I use some acronyms and abbreviations that are common in the SCI and research community. I put a key at the end of my submission for those of you that are unfamiliar with the terms.

I say this without hyperbole; I am dying. The complications of my spinal cord injury are killing me. I have defied my doctors’ predictions no less than 9 times in the past 3 years. There will be a time in the not so distant future that I do not recover. I have no hope that existing therapies will change this.

I have a child, a beautiful boy, who lost his childhood to my SCI. No child should have that experience. I want to see how his life unfolds. I want to meet the man that he will become. I want to meet my future grandchildren. I want to wring as much life out of this broken body as I can. I am not alone.

Hundreds of thousands of people face terminal hopelessness. Mothers watch their babies struggle in vain for air as SMA-1 steadily suffocates them. People with ALS face the same horrifying fate. Death and despair do not have to win. Stem cell treatments ready for clinical trials may effectively treat these conditions. Should we not have the opportunity to find out?

I acknowledge there are risks. All of life has risks. I have educated myself on the science of stem cells. I have met with key researchers. I believe they have reached a point where it is time to test these treatments in humans. We who know the future our afflictions hold for us are ready to face the risks posed by these treatments. Please give us a chance for life.

Approve clinical trials for hESC. Do not force us to leave our country in search of hope. In foreign clinics we risk fraud, dubious quality of care and worse. We trust in our government to see that, as US citizens, we receive the best possible treatments available in the world. That should include the potential cures made possible by hESC therapies.

Before another dies. Before another is forced to learn the rhythm of communicating while breathing on a respirator. Before another parent faces the despair of their child’s helplessness. Please approve clinical trials with hESC therapies. Thank you.

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SCI = spinal cord injury

SMA-1 = Spinal Muscular Atrophy 1- a condition that manifests in infants around age 3 months and the mortality rate at 12 months of age is 100%.

ALS = Amyotrophic Lateral Sclerosis (Lou Gehrig's Disease) a fatal, progressive muscle-wasting disease.

hESC = Human embryonic stem cells

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FDA Seeks Advice Re: Human Clinical Testing http://www.fda.gov/OHRMS/DOCKETS/98fr/07n-0471-nm00001.pdf

The FDA’s Cellular, Tissue and Gene Therapies Advisory Committee will meet April 10 in Gaithersburg, Md., to discuss “scientific considerations for safety testing” of such therapies, according to a notice on the FDA’s Web site yesterday.

"There’s a recognition at the FDA that stem cells are getting closer, and there needs to be some sort of guidelines on how to handle safety,”

Executives at Geron and Advanced Cell said they plan to appear at the meeting. Geron has communicated extensively with FDA reviewers over the design of the first human trial using embryonic stem cells, partly to convince the agency that putting the cells into people won’t result in the growth of abnormal cell clusters called teratomas, Thomas Okarma, Geron’s chief executive officer, said in interviews with Bloomberg.

http://www.telegram.com/article/20071219/NEWS/712190338/1002/BUSINESS

My Guilty Pleasures

Every Sunday without fail, I log on and read PostSecret I love the range and the creativity of the secrets. They remind me that everyone is fighting a great battle, some less visible than others.

The Colbert Report will be back on the ert soon. I miss my daily dose of truthiness. The Daily Show and late-night tv will be back too.

Hope

Hope. I haven’t allowed a lot of that lately. I find that spinal cord injury is best managed by keeping one’s thoughts firmly in check. Not a lot of reminiscing of life pre-injury, not a lot of wishing or dreaming about how different life would be if I were whole. At the same time, I do all I can to maintain my body so that if or when a cure comes, I’ll be eligible to participate. It’s this crazy balancing act of will, hope, acceptance and denial. I accept the dichotomy.

I expect something to come along that will result in functional gains in my lifetime. I just don’t pin a lot of hope on what that means. Will I be able to kick this chair to the curb? Will I be able to stand up and see what’s on the top shelf in the cupboard or at the grocery? Will I gain function that will improve my quality of life and perhaps even my longevity? I try to stay disciplined and not speculate too much.

When I slip, there is inevitably a price to be paid for allowing too much hope. Some experience will cruelly frame the limits of my current situation. An infection will fester and land me back in the hospital near-death. These episodes are followed by moments of deep despair and crushing depression. Better to stay rigidly neutral rather than ride this rollercoaster.

Then, Tucson happened and nothing will be the same.

Four days ago I crashed a private presentation by Hans Keirstead in Tucson. The hosts were very kind and welcoming. I was one of two people there in chairs and I had a chance prior to the presentation to talk to many of the members about what it meant to live with a spinal cord injury.

Meeting Hans Keirstead was the equivalent of meeting my favorite rock star. I was breathless. He is young, handsome and very charming. I saw no trace of the stereotypical stuffy academic in him. Before the presentation, he spotted me off in my little corner trying to be invisible; “Hi, I’m Hans” he smiled. I introduced myself and we chatted a bit. I told him the quick version of my attendance. The meeting was called to order and I found Hans sitting next to me as the hosts began their meeting and quickly attended to some other matters before the main presentation. The president of the organization invited every one to stand for the Pledge of Allegiance. Afterward, Hans leaned over and whispered conspiratorially, “I’m Canadian” I whispered back “that’s ok, I didn’t stand.” We shared a quiet laugh and then he was called to the stage.

In the dimmed auditorium I sat rapt as Hans lead us slide by slide through the complexities of his work. His ability to speak in every-day terms and retain the passion and scope of his work made his presentation all the more compelling. Time flew. Several times, I had to remind myself to breathe. Slide-by-slide, hope took root within me. It took all the discipline within me not to grill him on every slide for more details. I listened as he talked about how his work had progressed from acutes to chronics, how human clinical trials in a treatment for chronics were due to begin in months and how his lab was able to create the one thing my body cannot; motor neurons. I almost cried out when he showed an mpeg of muscle, grown from those laboratory motor neurons fire. Real, working muscle tissue! As if he could hear my mind screaming, he played the mpeg again. Hope fully germinated.

After the Q&A, I waited my turn to say my goodbyes. My host approached and bent down on one knee to speak to me eye-to-eye. “Would you like to join us for lunch?” My heart did the little dance of joy my paralyzed body could not. “Yes, please” I croaked. Thus, I found myself sitting next to Hans Keirstead as he talked about his work and his life. The more I learned about the man, the more confident I became that this was the researcher to back.

He talked a bit about his recent marriage, surfing, his love of flying helicopters and his time at Cambridge as the youngest person in his program in 200 years. He also talked about knowing at the age of 11 or 12 that he wanted to fix the brain and the spinal cord. Inside of Hans lives a desire to end the suffering of the many afflicted with neurological disorders. Conditions as diverse as SCI, ALS, MS, Parkinson’s and Alzheimer’s share commonalities that mean what works for one impacts other conditions as well. He runs an amazingly prolific lab. If he were not a stem cell researcher, I could easily see him as a billionaire internet entrepreneur.

I am not one prone to spiritual hyperbole. Yet, hearing Hans speak, looking into him, I feel that this man is destined to cure paralysis. Any chance that I can remain passive about the promise of stem cell research is gone. I’ve drank the Kool-aid and I am a believer; in the science and the scientist.

Lunch ended far too soon for me and it was time to part. I said my goodbyes to new friends with hugs and handshakes. Then I was in my van alone with my thoughts. The totality of the day’s events settled in and I began to sob from pure joy. On the drive home I allowed my mind to wander. Will I walk again? Maybe just stand eye-to-eye with another person? Would I hike Piestewa Peak again? Maybe one day I will feel sun and salt water on my legs and wiggle my toes in the sand. Maybe I’ll be able to physically express the joy my heart and spirit can barely contain. Maybe one day soon.

In less than 2 weeks I have the honor of visiting Hans’ lab and learning even more about his work, its progress and implications. I’ll share more then.

Just Pretend You're Dead

This advice has been proffered for two vastly different circumstances.

First, the dreaded grizzly bear attack. I first heard this when I was 6 or 7 years old and preparing for my first camping trip. “Pretend you’re dead” an older cousin counseled sagely. I of course listened breathlessly to my cousin’s crisis cookbook on dealing with everything from the boogie man to that grizzly; wisdom meant to save my life in the wilds of central Ohio. At the time, this little Buckeye girl had no idea that the odds were better that I’d meet the boogie man in those Ohio fields.

I’ve moved west. Black bears are more common in my part of the country than grizzlies although their numbers are dwindling. Now, in the unlikely event that I ever do find myself facing an imminent bear attack, I have that childhood strategy to rely on; curl up on the ground in a tight little ball to protect my mushy parts and lay motionless. The thinking goes that the bear will believe you to be dead and bears are not interested in eating dead food. I don’t know if it’s true or not and I hope to never find out.

The second situation in which I was advised to consider this strategy is the dreaded public “invol.” This is one of those nasty little spinal cord injury secrets that we tend to share only with those that know the secret handshake and password to the club. “Invol” is short hand for involuntary bowel movement. I am a T-10 paraplegic. That means that from my mid-chest down I have no sensation or voluntary control. Code for I can’t tell when I have to ‘go.’

The general public believes that the worst part about having a SCI is that we can’t walk. On my list of all the individual attributes of my SCI that I would change if I could, walking barely makes the top 10. Spots one and two are owned by “one” and “two;” return of voluntary bladder and bowel function. I pee through a tube (a catheter) on a rigid schedule. Pooping is an ugly ritual that I leave to your imagination. However, as the saying goes, “shit happens.” Usually it happens at the most inopportune time. Fear of “going” in public keeps a number of people with neurological injuries locked safely away at home.

It was a frank discussion with another person with a spinal cord injury where the sage advice of my childhood was resurrected. We exchanged tips and stories of life in a chair when the subject turned to the dreaded invol. I shared my one and only story and he told me his. His was more public and contained a higher embarrassment factor than mine. Then, in that way that all the more poignant because it is such a casually spoken bald truth, he said to me “I’ve learned how to deal with it though.” He winked and smiled; “just pretend you’re dead.” We laughed but it stuck with me. This handsome young man, doctor-to-be struck by fate and now learning some of life’s more bitter lessons.

“Just pretend you’re dead.” Maybe spinal cord injury and grizzly bear attacks have more in common than I’d first realized. Both are sudden, unexpected and life altering. If survived, both leave a lot of room for second-guessing and “what if’s” Both tear through any illusion that life is fair, orderly and predictable. I suspect too that there may be some commonality in the area of public invol.