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.
Sunday, December 30, 2007
Saturday, December 1, 2007
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.
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.
Monday, November 26, 2007
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.
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.
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
Friday, September 28, 2007
The Power of a Single Finger
One finger, a single click can change lives. I ask you to use yours to help me.
With a minimum of 500 clicks on this URL http://tinyurl.com/2776rg I will earn a chance to spend the day with presidential candidate Mike Huckabee. If I win that chance, I will spend my time with him lobbying for Spinal Cord Injury issues. By convincing one candidate to begin a public discussion on SCI issues, other candidates will follow suit.
This is a wonderful opportunity to bring SCI issues to the forefront on the national political stage. All you need to do is click. You don't need to register on the site, your email address is not collected (unless you actually enter it). No one will contact you. You are not endorsing this candidate or any other by clicking.
Quite frankly, I am not endorsing a candidate at this time. I am simply hoping to use this opportunity to communicate directly with a candidate and jump-start this conversation.
This is the simplest way possible to advocate for SCI issues without having to really do anything. Please, will you click? Click from every computer you can access, please.
Bonus points if you'll forward/post this URL for others to click as well. I assure you, simply clicking will not add you to any mailing list or commit you in any way to a candidate or political issue.
My friend and fellow advocate, Steven Edwards is also collecting clicks http://tinyurl.com/2686y7 but he has 500 and he's working toward earning more powerful rewards.
WE ARE NOT COMPETING. This is a cooperative effort.
Thanks!
Jen
With a minimum of 500 clicks on this URL http://tinyurl.com/2776rg I will earn a chance to spend the day with presidential candidate Mike Huckabee. If I win that chance, I will spend my time with him lobbying for Spinal Cord Injury issues. By convincing one candidate to begin a public discussion on SCI issues, other candidates will follow suit.
This is a wonderful opportunity to bring SCI issues to the forefront on the national political stage. All you need to do is click. You don't need to register on the site, your email address is not collected (unless you actually enter it). No one will contact you. You are not endorsing this candidate or any other by clicking.
Quite frankly, I am not endorsing a candidate at this time. I am simply hoping to use this opportunity to communicate directly with a candidate and jump-start this conversation.
This is the simplest way possible to advocate for SCI issues without having to really do anything. Please, will you click? Click from every computer you can access, please.
Bonus points if you'll forward/post this URL for others to click as well. I assure you, simply clicking will not add you to any mailing list or commit you in any way to a candidate or political issue.
My friend and fellow advocate, Steven Edwards is also collecting clicks http://tinyurl.com/2686y7 but he has 500 and he's working toward earning more powerful rewards.
WE ARE NOT COMPETING. This is a cooperative effort.
Thanks!
Jen
Wednesday, July 4, 2007
Help Please
I write this from bed as I am rather ill right now; part of why I haven't posted in a long, long time.
But I am writing to beg you to pray in whatever manner that you do that for a dear, dear friend. Another friend with an SCI is gravely ill.
Amanda is wise beyond her years, funny and adventuresome. She and I have shared laughs and tears and all our secret quirks yet we've never met. Anyone blessed to have a relationship with Amanda is richer for it.
Please send you thoughts, prayers, positive energy her way. Thank you.
But I am writing to beg you to pray in whatever manner that you do that for a dear, dear friend. Another friend with an SCI is gravely ill.
Amanda is wise beyond her years, funny and adventuresome. She and I have shared laughs and tears and all our secret quirks yet we've never met. Anyone blessed to have a relationship with Amanda is richer for it.
Please send you thoughts, prayers, positive energy her way. Thank you.
Thursday, May 24, 2007
Good News/Bad News
I have severe osteoporosis and I've fractured both femurs since my spinal cord injury. The good news is that I have matching X-rays. The bad news is that I've learned that I am incredibly fragile.
Osteoporosis is a problem for people who don't bear weight on their bones and I understand that most people with SCI have some degree of osteo. After my first fracture, I learned a lot about osteo, and I've been actively working to reverse my bone loss. I take Actonel regularly. I eat a high calcium diet and take supplements. I stand for 2 - 3 hours each day in my standing frame. I participated in a FES study that created weight bearing exercise.
I went for a DEXA scan today. DEXA scans measure bone density. Often, the practitioner can give you an idea of how "old" your bones are based on their density. Last year I learned that the long bones in my arms were 36 y.o. my right hip was 75 y.o. and my left hip was 85 y.o. YIKES! I'm in my mid-forties.
The good news from today's DEXA, the very, very, very good news is that my spine and right hip have shown improvements. The spine more than the hip but improvement is improvement. The bad news, the very, very bad news is that my left hip has lost about 35% more bone density.
After consultation with the doctor, it appears that may be because of two factors, my most recent fracture was to my left leg. The splint and the support that kept the leg elevated seems to have been a factor in my bone loss. The other reason is that my left hip has twisted from the imbalance of my muscles that should hold it stable. The condition is called a pelvic obliquity and it's caused a severe "swoop" in my spine. It's hard to breathe sometimes because if it. Since I no longer bear my weight evenly on my hips, this seems to be a major factor.
The good news is that we'll get more aggressive on fixing my hip which has caused numerous problems. The bad news is that we'll get more aggressive on fixing my hip.
As far as osteoporosis treatment and prevention; the good news is there are options. I will take a new drug, Forteo and continue to stand in my frame and maintain a calcium-rich diet. The bad news, Forteo is a relatively new drug and there are some concerns about its safety. I think about the drugs that have created safety concerns lately; Vioxx, Avandia... others. I'll be taking this drug that may or may not pose risks by daily injections for two years. The other bad news, I'm no longer eligible for the FES study so I'll be unable to use FES and weight lifting to preserve my bones.
During my rehab I was taught that all of my choices from here on are going to be about weighing risks and benefits in making decisions about my care. I just hope these particular decisions are right in the long run.
Wednesday, May 23, 2007
du Jour
Today Djaca and I had lunch at du Jour, the restaurant run by the students of the Arizona Culinary Institute. I am completely stuffed and ready for a nap. What a treat that was! From the amuse bouche, to desert magnificent!
Djaca and I worked on my French. She is a patient teacher and hardly laughs as I slaughter a beautiful, lyrical language. We sat and talked about her life in Paris, our experiences as mothers and celebrity gossip while tuxedo-shirted waitstaff saw to our every need. Our server, Shelly, excitedly talked about her upcoming apprenticeship on a Hawaiian cruise line. I told her stories of working in Bermuda.
It was a lovely reminder that I need to treat myself from time-to-time and also that luxury need not be costly. The entire 4-course lunch was less than $20 a plate. If you have a cooking school in your town, check to see if they run a restaurant. It's well worth the time and the price.
The only down side is that du Jour is only open for lunch. And they are closed 1 week each month. Nonetheless, I will return and bring new friends to savor the food and wine and conversation. For that time, I was whole again.
Monday, May 21, 2007
TMI
Of all the weirdness that is me I will share the following facts:
As a child I had a traumatic experience with beets that I still will not talk about but beets will never knowingly pass my lips. Seriously, beets scare me.
As a child I had a traumatic experience with beets that I still will not talk about but beets will never knowingly pass my lips. Seriously, beets scare me.
As a child, Dickie Cordell chased me and threw his ice cream cone at me and it hit my leg and stuck and slowly slid down my leg to my ankle. The gross part was that Dickie was the fat mean kid in our neighborhood and the cone was filled with Miracle Whip. I can't stand the stuff and even the smell of mayo makes me nauseous. How many people do you know have had not one but two traumatic experiences with food?
I love, I mean L O V E cheese popcorn but I don't like having my fingers turn orange, so I use chopsticks. Works with Cheetos too.
When I'm really relaxed and breathing deeply, my nose whistles. This is especially annoying as I am trying to go to sleep. Sometimes it even wakes me up.
I am incapable of remembering numbers of any kind. What was 6 last time will be 32 the next and 3 the time after. Never rely on me to judge distance.
I can't carry a tune in a bucket but I love to sing. When my son was little and I would sing to him, he would put his hand over my mouth and say "Momma, don't sing."
Once I start reading a book, I must finish it; no matter how bad it is. I am a compulsive reader. My ex had it written into his will that there be no printed material of any kind within eyesight of his casket. He envisioned me grieving at his casket when the little "Made in China" tag would catch my attention. OK, it's funnier when he tells it.
Which reminds me, I cannot tell a joke. I always blow it. They're never funny when I tell them.
How about you? What makes you "weird?"
Sunday, May 20, 2007
My Garden
I've always felt good when my hands are wrist-deep in dirt. There's something very satifying in the smell and the feel of rich, cool soil and the crisp smell of green. For many years I worked to grow the perfect tomato. Extra hard to do in Arizona's harsh climate.
Since my spinal cord injury, that's felt out of reach. Then I visited my friend Wanda, a chair user for 40 years. She has the most beautiful garden that she tends by herself. And she grows the BEST tomatoes! Yum! If she can, I can.
Yesterday, I worked with a landscaper to design a back yard space where I could get out and garden again. Today, instead of seeing used coffee grounds and egg shells, I see compost. I can taste my tomatoes and basil now.
I'm eager for fall and the upcoming growing season!
Friday, May 18, 2007
SSDD
Big sigh. I don't want this blog to be a continual rant about parking. I went grocery shopping today. Took all these pictures as I was looking for a spot for my van. These are just the 3 instances where the median was blocked so my ramp can't come down. This doesn't even consider the cars that didn't have a disabled driver or passenger. I just don't understand why people can't get it. Any ideas? If you're interested in seeing more violations, some incredibly outrageous, like a big rubber chicken, check out http://www.caughtya.org/
Thursday, May 17, 2007
A picture worth a thousand words
I am amazed that so many people have interest in this. So far though, no response from the Sheriff's office or the County Board of Supervisors.
Rather than retell the story, here are the links.....
http://www.azcentral.com/phpAPP/mult...al.com/12news/
__________________
And print....
http://blogs.eastvalleytribune.com/view.php?op=ViewArticle&articleId=1088&blogId=32
http://www.eastvalleytribune.com/story/89356
http://www.kpho.com/news/13263383/detail.html
And, someone I don't know, posted this....
http://malaysia.answers.yahoo.com/question/index?qid=20070507133559AAEgGpX
Other Websites:
__________________
And print....
http://blogs.eastvalleytribune.com/view.php?op=ViewArticle&articleId=1088&blogId=32
http://www.eastvalleytribune.com/story/89356
http://www.kpho.com/news/13263383/detail.html
And, someone I don't know, posted this....
http://malaysia.answers.yahoo.com/question/index?qid=20070507133559AAEgGpX
Other Websites:
Today, my op-ed appeared in the East Valley Tribune.
Last week I came upon a situation in which I arrived at a local business to deliver a speech on accommodating persons with disabilities and ironically could not find a place to park because a Maricopa County Sheriff’s car was unnecessarily parked in what, at the time, was the only available disabled space. I am a wheelchair-user and require a ramp to enter and exit my vehicle.
I snapped a photo of the officer’s car and on Thursday, the EastValleyTribune.com ran the picture with a story entitled, “Deputy did not belong in handicapped parking spot.” I am surprised by how much attention this photo has received and at the comments posted in response to it. I’d like to share with you some of the details that didn’t make the story and respond to some of the comments posted thus far.
First, I did not mean this photo to be an indictment against law enforcement officers, Sheriff Joe or the MCSO.
I do, however, believe the photo epitomizes the situation people face when dealing with accessible parking. I expected a law enforcement officer to have more empathy and better understanding of how precious those accessible spots are for those of us who need them.
The original statements put forth by the MCSO did indeed take responsibility. But, the MCSO spokesperson went on to state “the lot was full, the deputy needed to conduct official business” and that the car was not parked there long. Almost everyone who inappropriately parks in accessible spaces justifies their actions in the same manner.
The missing details are thus. I did circle the lot and luckily the spot next to the deputy came available. I realized before I started down my ramp that there was not enough clearance at the bottom so I waited inside my van until help arrived. While waiting, I watched another woman with an accessible parking hang-tag circle the lot and end up parking in a spot rather far away. This elderly woman hobbled up to the building on her cane past the inappropriately parked deputy’s vehicle. I wonder what she thought as she passed. Some have said “no harm, no foul.” I hope you’ll agree that this would be a much different story if that woman had fallen in the lot and broken her hip; or, if I had gotten to the end of the ramp and remained trapped there unable to wheel up my ramp backward and unable to go forward. As a person with a spinal cord injury, I am far more susceptible to heat stroke than an able-bodied person. Indeed a friend died last summer after been trapped outside for about 20 minutes.
What if the deputy had parked there after I had exited my vehicle and prevented me from getting back into my van? This often happens in parking lots.
As for how much room it takes to maneuver, wheel chair ramps have wings on the sides to protect us from falling off. I must clear the ramp before I can turn. My knees were against the deputy’s vehicle and I could not get the extra inch I needed to clear. These spaces tend to be quite tight.
I too become frustrated when I see people abusing the privilege of accessible parking. They know who they are. I would welcome stricter enforcement of the privilege.
Please realize that for many of us, those spots are our lifeline to living a “normal” life, whatever that may be. I need room for my ramp so that I can get out of my vehicle to work, shop, worship and do all the same day-to-day things that anyone else does. In my wheelchair, I am about the height of your average 10 year old. Wheeling through parking lots can be quite a challenge when cars don’t see me. The accessible spaces also provide a safe route in and out of the building.
My hope in publicizing the photo was that the public would take a moment and consider the importance of accessible parking and the importance of those median spaces in between. If you are not the disabled driver or passenger that was assigned the permit, don’t use it. If you are that person and you are not getting out of the vehicle, don’t use it. Please don’t park your motorcycle or shopping cart in the medians between accessible spaces. I’m not asking that you make my life easy. I just hope you won’t make it impossible.
I snapped a photo of the officer’s car and on Thursday, the EastValleyTribune.com ran the picture with a story entitled, “Deputy did not belong in handicapped parking spot.” I am surprised by how much attention this photo has received and at the comments posted in response to it. I’d like to share with you some of the details that didn’t make the story and respond to some of the comments posted thus far.
First, I did not mean this photo to be an indictment against law enforcement officers, Sheriff Joe or the MCSO.
I do, however, believe the photo epitomizes the situation people face when dealing with accessible parking. I expected a law enforcement officer to have more empathy and better understanding of how precious those accessible spots are for those of us who need them.
The original statements put forth by the MCSO did indeed take responsibility. But, the MCSO spokesperson went on to state “the lot was full, the deputy needed to conduct official business” and that the car was not parked there long. Almost everyone who inappropriately parks in accessible spaces justifies their actions in the same manner.
The missing details are thus. I did circle the lot and luckily the spot next to the deputy came available. I realized before I started down my ramp that there was not enough clearance at the bottom so I waited inside my van until help arrived. While waiting, I watched another woman with an accessible parking hang-tag circle the lot and end up parking in a spot rather far away. This elderly woman hobbled up to the building on her cane past the inappropriately parked deputy’s vehicle. I wonder what she thought as she passed. Some have said “no harm, no foul.” I hope you’ll agree that this would be a much different story if that woman had fallen in the lot and broken her hip; or, if I had gotten to the end of the ramp and remained trapped there unable to wheel up my ramp backward and unable to go forward. As a person with a spinal cord injury, I am far more susceptible to heat stroke than an able-bodied person. Indeed a friend died last summer after been trapped outside for about 20 minutes.
What if the deputy had parked there after I had exited my vehicle and prevented me from getting back into my van? This often happens in parking lots.
As for how much room it takes to maneuver, wheel chair ramps have wings on the sides to protect us from falling off. I must clear the ramp before I can turn. My knees were against the deputy’s vehicle and I could not get the extra inch I needed to clear. These spaces tend to be quite tight.
I too become frustrated when I see people abusing the privilege of accessible parking. They know who they are. I would welcome stricter enforcement of the privilege.
Please realize that for many of us, those spots are our lifeline to living a “normal” life, whatever that may be. I need room for my ramp so that I can get out of my vehicle to work, shop, worship and do all the same day-to-day things that anyone else does. In my wheelchair, I am about the height of your average 10 year old. Wheeling through parking lots can be quite a challenge when cars don’t see me. The accessible spaces also provide a safe route in and out of the building.
My hope in publicizing the photo was that the public would take a moment and consider the importance of accessible parking and the importance of those median spaces in between. If you are not the disabled driver or passenger that was assigned the permit, don’t use it. If you are that person and you are not getting out of the vehicle, don’t use it. Please don’t park your motorcycle or shopping cart in the medians between accessible spaces. I’m not asking that you make my life easy. I just hope you won’t make it impossible.
My first post
I have finally given up on my other blog. If you are interested, it's here http://360.yahoo.com/jenlongdonDon't know that I have anything interesting to say but here goes!
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