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.
Monday, November 26, 2007
Saturday, November 24, 2007
Coming out
The day-to-day trials of spinal cord injury are infinate and embarrassing. Most people with SCI never speak about those details except among ourselves. I have been one of them. In an effort to maintain what little is left of my dignity, I do not speak of these things publicly. And therein lies the rub. If we don't voice these indignities then we remain the "brave little angels" in the wheelchairs.
I may regret this later but I have decided to share those details in the hopes that a greater understanding of what we go through will help move others to act politically and finanically to help end paralysis. To that end, I share the following post from my spinal cord injury group. The days following this post are the closest I've come to suicide post-injury.
I have had a commitment on my calendar for about a month to go and speak at a local high school. Even though I’m still sick, I figure I can pull it together long enough to give a rousing speech. I love doing these events and I think I’m pretty good at them too.
I get there, still feeling a little weak but I know that adrenaline will carry me through the speech. I went to transfer from the drivers seat to my wheelchair and boffed the transfer and go down. I’m all crumpled up and stuck in the back of my van so I dial 911.
It’s not a total disaster yet, I’m partially bearing my weight with my arms but when they give, I’ll fall the rest of the way in this very odd position and break more bones. I get the most annoying dispatcher in the universe. I try to explain everything to her. I asked her to please call inside the school and get someone to come out and help me stay up. This is a huge high school.
Pretty soon the campus cop shows up and the principal and vice principal in a golf cart. They all sit there and look at me. I yell at them to come help me please, I’m falling, I’m breaking my legs, please just lift me under my arms and keep me from falling. “We’re not allowed to touch you.” I’m crying, I scream in frustration, pain, fear and rage.
Finally, EMS appears. They lift me into my driver’s seat and inspect me. Not too deformed. Do I want to go to the hospital? One of the guys says, “At the very least, we should check your colostomy.” I don’t have a colostomy. But, I did have an invol all over the back the van.
Total humiliation in front of 7 men. I say the principal. “I’m supposed to be your speaker today, I’m sorry this will have to be rescheduled.” So much for a professional encounter…
The EMS guys don’t want to let me go off myself. So they followed me home, went in the house and got my shower chair and lifted me into that and helped me into the house. I also missed my interview. I thought I had a job. I was going to show up so confident and together, instead I can’t go because I pooped my pants. I called my PCA and begged her to come back and help me clean up the van and such.
Don’t know yet what’s broken but I've reached a point in my bone density that every fall results in a fracture of something, if only a toe. I’ll wait until there’s enough swelling and bruising to pinpoint it. Otherwise I get x-rays from T-10 to my toes. Three times in the last year is enough radation for one body thank you. I have huge abrasions on my back and butt and hip that I have to watch until they heal and it looks like I have an apple sized bruise on my hip.
Why is it that once you’re down, everything piles on? My son still hasn’t bothered to call to see if I’m still alive. Right now, I want to go to sleep and just peacefully pass on. I’m tired of fighting. I’m tired of the everyday humiliations and I’m tired of hurting and being sick. I hate being alone. Right now I never want to leave my bed again.
Wasted an up-do on this day damn it! I’m going to park myself in a safe place and drink!
I may regret this later but I have decided to share those details in the hopes that a greater understanding of what we go through will help move others to act politically and finanically to help end paralysis. To that end, I share the following post from my spinal cord injury group. The days following this post are the closest I've come to suicide post-injury.
I have had a commitment on my calendar for about a month to go and speak at a local high school. Even though I’m still sick, I figure I can pull it together long enough to give a rousing speech. I love doing these events and I think I’m pretty good at them too.
I get there, still feeling a little weak but I know that adrenaline will carry me through the speech. I went to transfer from the drivers seat to my wheelchair and boffed the transfer and go down. I’m all crumpled up and stuck in the back of my van so I dial 911.
It’s not a total disaster yet, I’m partially bearing my weight with my arms but when they give, I’ll fall the rest of the way in this very odd position and break more bones. I get the most annoying dispatcher in the universe. I try to explain everything to her. I asked her to please call inside the school and get someone to come out and help me stay up. This is a huge high school.
Pretty soon the campus cop shows up and the principal and vice principal in a golf cart. They all sit there and look at me. I yell at them to come help me please, I’m falling, I’m breaking my legs, please just lift me under my arms and keep me from falling. “We’re not allowed to touch you.” I’m crying, I scream in frustration, pain, fear and rage.
Finally, EMS appears. They lift me into my driver’s seat and inspect me. Not too deformed. Do I want to go to the hospital? One of the guys says, “At the very least, we should check your colostomy.” I don’t have a colostomy. But, I did have an invol all over the back the van.
Total humiliation in front of 7 men. I say the principal. “I’m supposed to be your speaker today, I’m sorry this will have to be rescheduled.” So much for a professional encounter…
The EMS guys don’t want to let me go off myself. So they followed me home, went in the house and got my shower chair and lifted me into that and helped me into the house. I also missed my interview. I thought I had a job. I was going to show up so confident and together, instead I can’t go because I pooped my pants. I called my PCA and begged her to come back and help me clean up the van and such.
Don’t know yet what’s broken but I've reached a point in my bone density that every fall results in a fracture of something, if only a toe. I’ll wait until there’s enough swelling and bruising to pinpoint it. Otherwise I get x-rays from T-10 to my toes. Three times in the last year is enough radation for one body thank you. I have huge abrasions on my back and butt and hip that I have to watch until they heal and it looks like I have an apple sized bruise on my hip.
Why is it that once you’re down, everything piles on? My son still hasn’t bothered to call to see if I’m still alive. Right now, I want to go to sleep and just peacefully pass on. I’m tired of fighting. I’m tired of the everyday humiliations and I’m tired of hurting and being sick. I hate being alone. Right now I never want to leave my bed again.
Wasted an up-do on this day damn it! I’m going to park myself in a safe place and drink!
Thursday, November 15, 2007
My Anniversary
Today is my anniversary. Four years ago today, my life completely changed. November 15, 2003, David and I moved in together and began our fairytale life. Oh sure, there was a handsome prince, beds of roses, moonlight dancing. There were dragons too, and evil trolls. We had financial struggles as David dealt with the fallout of an extremely acrimonious divorce. We had relationship struggles as our children dealt with the implications of our relationship. But, mostly it was good. No; great.
That magic year cumulated with a dream trip to Fiji. Away from the cacophony of the day-to-day we made commitments. First, to each other; I finally agreed to marry David. Next to our futures. We both decided to earn our doctorates; David’s in toxicology, mine in Oriental Medicine.
Three years ago today, my life completely changed yet again. November 15, 2004 started with the usual hike up Piestewa Peak to watch the sunrise. Then, our first day back to work following our Fiji trip. It was a whirlwind day of catching up and dreamy recollections of that idyll in Fiji. If coming down that mountain that morning I had known how much life would change just 12 hours later, I would have lingered.
9:20 PM November 15, 2004, we closed up shop and headed out for a quick dinner at our favorite little Mexican joint. We never made it home. At 9:46 PM, 5 bullets ripped through our lives and when the smoke cleared we learned those bullets had also ripped through David’s brain and my spinal cord. I guess you can also say that November 15th is our birthday since both of us “coded” that night.
The intervening three years from there to here have been insane. David has learned to function in a world of total darkness and he copes with incapacitating pain on a daily basis. My first big victory was learning to sit upright without assistance. Since then I’ve spent a lot of time learning how to cope with gravity in a new way. I struggle with life-threatening infections on a regular basis.
Since our injury, we have learned much about the character of people. There are those who cruelly took advantage of our tragedy and those who found our situation too sad or too challenging and chose to leave us behind. But mostly there have been angels who have given of themselves to comfort and support us. I am grateful to each and every one of you for all the large and small ways you have brought joy and comfort into our lives.
In the three years since our injuries, I have learned much about the science of neurological injuries. In these three years science has learned a lot about the science of neurological injuries too. What they’ve learned is that both the brain and the spinal cord are capable of regeneration under the right circumstances. This is huge, just like there was once a belief that the world was flat. Doctors now talk about when they will be able to heal our injuries instead of “if.”
The science exists. Clinical trials are beginning here in the US and throughout the world. Very soon, I will have the honor of meeting with one of the top researchers in the US to see first-hand how his work has progressed and learn more about these exciting advances. I’m eager to tell you all about after my trip.
Year-by-year, life goes on. November 15th will come again next year and the next… That magic day when scientists announce the “cure” for my spinal cord injury and David’s brain injury moves closer and closer. The biggest hurtle to this cure is money. The NIH budget has been decimated by war spending and other governmental priorities. Thus, those of us with chronic conditions from SCI to cancer to diabetes and MS find that we must fund our own cures.
So, on this November 15th, I would like to make lemonade from these lemons that have been handed to us. Once again, I need your help to do so. Will you help us fund these cures? Will you commit to raising one thousand dollars before the next anniversary of my injury? It’s less than $20 a week. Your thousand, along with mine and that person’s and all the others will give the researchers the boost they need.
I am asking you to have a car wash, a bake sale, a whatever-a-thon. Pass the hat at your Super Bowl party. Put a donation jar at your favorite hangout. Be creative and have fun with it.
Please.
The funds you collect will be donated electronically and will go directly to the researchers. No handling fees or administration costs.
I am also asking for your public commitment to raising these funds. Please respond here and let me know that you are willing to help. I know there are a ton a questions you’ll want answered. In the coming weeks, I will supply a link for your donations and some information about the research.
Thank you for your love and support.
Jen
That magic year cumulated with a dream trip to Fiji. Away from the cacophony of the day-to-day we made commitments. First, to each other; I finally agreed to marry David. Next to our futures. We both decided to earn our doctorates; David’s in toxicology, mine in Oriental Medicine.
Three years ago today, my life completely changed yet again. November 15, 2004 started with the usual hike up Piestewa Peak to watch the sunrise. Then, our first day back to work following our Fiji trip. It was a whirlwind day of catching up and dreamy recollections of that idyll in Fiji. If coming down that mountain that morning I had known how much life would change just 12 hours later, I would have lingered.
9:20 PM November 15, 2004, we closed up shop and headed out for a quick dinner at our favorite little Mexican joint. We never made it home. At 9:46 PM, 5 bullets ripped through our lives and when the smoke cleared we learned those bullets had also ripped through David’s brain and my spinal cord. I guess you can also say that November 15th is our birthday since both of us “coded” that night.
The intervening three years from there to here have been insane. David has learned to function in a world of total darkness and he copes with incapacitating pain on a daily basis. My first big victory was learning to sit upright without assistance. Since then I’ve spent a lot of time learning how to cope with gravity in a new way. I struggle with life-threatening infections on a regular basis.
Since our injury, we have learned much about the character of people. There are those who cruelly took advantage of our tragedy and those who found our situation too sad or too challenging and chose to leave us behind. But mostly there have been angels who have given of themselves to comfort and support us. I am grateful to each and every one of you for all the large and small ways you have brought joy and comfort into our lives.
In the three years since our injuries, I have learned much about the science of neurological injuries. In these three years science has learned a lot about the science of neurological injuries too. What they’ve learned is that both the brain and the spinal cord are capable of regeneration under the right circumstances. This is huge, just like there was once a belief that the world was flat. Doctors now talk about when they will be able to heal our injuries instead of “if.”
The science exists. Clinical trials are beginning here in the US and throughout the world. Very soon, I will have the honor of meeting with one of the top researchers in the US to see first-hand how his work has progressed and learn more about these exciting advances. I’m eager to tell you all about after my trip.
Year-by-year, life goes on. November 15th will come again next year and the next… That magic day when scientists announce the “cure” for my spinal cord injury and David’s brain injury moves closer and closer. The biggest hurtle to this cure is money. The NIH budget has been decimated by war spending and other governmental priorities. Thus, those of us with chronic conditions from SCI to cancer to diabetes and MS find that we must fund our own cures.
So, on this November 15th, I would like to make lemonade from these lemons that have been handed to us. Once again, I need your help to do so. Will you help us fund these cures? Will you commit to raising one thousand dollars before the next anniversary of my injury? It’s less than $20 a week. Your thousand, along with mine and that person’s and all the others will give the researchers the boost they need.
I am asking you to have a car wash, a bake sale, a whatever-a-thon. Pass the hat at your Super Bowl party. Put a donation jar at your favorite hangout. Be creative and have fun with it.
Please.
The funds you collect will be donated electronically and will go directly to the researchers. No handling fees or administration costs.
I am also asking for your public commitment to raising these funds. Please respond here and let me know that you are willing to help. I know there are a ton a questions you’ll want answered. In the coming weeks, I will supply a link for your donations and some information about the research.
Thank you for your love and support.
Jen
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