I've met some of the most incredible people since my injury, people I would never have met otherwise. My life is so much richer for knowing them. Amanda is one of those people.
I think I would have liked her no matter what. Amanda is an intrepid spirit. She's very smart, well-read and well-traveled. She's introduced me to Russian art and a new author. She teaches me so much and she's half my age!
Amanda was injured on Christmas day two years ago. She was snowboarding and struck a piece of grooming equipment that wasn't supposed to be there. I can only imagine what that day must have been like for her and her family.
Amanda sustained the most devastating spinal cord injury possible. She is now a C-2 quadriplegic. She requires a respirator to breathe. She depends on other adaptive technology to manage her life; voice activated software allows her to use her computer (she's diagnosed and fixed my computer during a chat session), maneuver her wheelchair and operate the lights and doors in her home. She's headed back to school to finish her post-grad program. She's one of the most grounded people I've ever met. I have no pity for Amanda; only profound admiration.
I am not the writer that Amanda is. I'm struggling to find the proper words to introduce her here just as I struggle to find words to describe this new life. I am, however, smart enough to know when I should get out of the way and let someone else talk. Following is a recent entry from Amanda's blog. It says everything. I begged her to allow me to share it. She was gracious enough to agree.
So, with permission, here's Amanda....
Thoughts on Being "Disconnected"
I had a conversation with somebody recently and they asked me what one word I would use to describe myself. It’s not very hard for me to think of an answer. That word is “disconnected.”There is the obvious physical disconnect. My day seems to be a never ending routine of somebody touching or otherwise manipulating my body for 100 different reasons. Feeding me, turning me, stretching me, bathing me, keeping my lungs clear and on and on. It never ends. Once one thing is done there is little reprieve until the next. Everything is scheduled and charted. Micromanaged. In reality my life has become a series of checklists and medication sign off sheets. Nothing can be forgotten. There is very little room for compromise or rescheduling.
Some of it happens when I am sleeping. For the most part though, I am awake. And when I am awake all this takes on a surreal feeling. I know this stuff is being done to my body because I lay there or sit there and watch it. But for the most part I feel very little of it. And for what I can feel, the sensation is either so impaired that unless I am watching myself being touched I can’t be sure what is going on. Or there is pain. Pain that doesn’t always make sense and can drive me to want to die on the spot. But that’s an entirely different topic.However, I am for the most part detached from it all. Disconnected. It might as well be somebody else lying on the bed and I am watching them having things that look both undignified and uncomfortable done to them. Dignity went out the door long ago. I don’t even know anymore what that word means when it pertains to me and my self-image.
This is a good day. On a bad day my body spasms like mad or otherwise seizes up. It shakes, thrashes, clenches, freezes. Again I watch it with detachment. It’s my body trashing around but it doesn’t feel like it. Mind and body are disconnected.
Then there is the emotional disconnect, which is I believe harder to deal with. I try to make myself feel better by repeatedly reminding myself “things could be worse.” And it’s true, they could be much worse. Some people don’t get this when I tell them that. For them my life is about as terrible one as they can imagine. It sucks there is no doubt about that. But I have no pretense that my life is as bad as it gets. The truth is though, regardless of my understanding of this, it doesn’t really make things any easier to deal with. The reality is that having to depend on somebody else for essentially everything is humiliating, exhausting, and although this might make not make a lot of sense, isolating. I have people around me 24/7. If not right in the same room then within earshot. Which means no closed doors and somebody popping their head in the room every few minutes to make sure the ventilator circuit hasn't popped off and that I am still breathing. But even with that, I feel alone, cut off, and not part of everything else going on.
I can do things. More things that most people might imagine. But they all involve somebody else doing something to enable me to do whatever it is I can do. Setting up my laptop so I can use it, putting me in my wheelchair so I can move around, even something as apparently easy as using a voice activated system to turn on lights requires somebody attaching my speaking valve to my tracheostomy tube when I wake up in the morning so I actually have a voice. The effect of this is that while I cherish what little independence I can have, it is always bittersweet because that even that independence is dependent upon others. It wears me down to continually ask for things. Many of those who function in a caregiver role have become very good at anticipating my needs. This makes things somewhat easier. But often I just skip over doing something because I am too tired to ask. This makes me feel disconnected from myself and from life. That might not make sense but that is how it feels. It is an incredible mind fuck to see a glass of water on a table a few inches from you and not be able to do a damn thing to drink it unless you ask somebody to come and help. But that glass of water is pretty much a metaphor for a thousand other things. All around me, out of reach, disconnected.
More later.
__________________
Monday, March 24, 2008
Sunday, March 23, 2008
Our Trip to RIRC - Correcting an Oversight.
Someone pointed out that I shared the report from our trip to Dr. Hans Keirstead's lab at RIRC with everyone in the world; except this blog.
So, to correct this oversight, the report in all it's 13-page glory is attached below along with the introduction and summary. It was inspiring to visit with everyone at RIRC. They are certain and steadfast in their work. Quite a juxapostion between this post and my other recent post on suicide.
For many with severe disability the two ends of this spectrum are so much closer and entwined than others might think.
Remember, the report below was created for an audience of well-informed people with SCI. If you have any questions, if any acronyms are troublesome, let me know and I'll clarify. Happy reading.
Attached is the report of our trip to the Reeve-Irvine Research Center and Dr. Keirstead’s lab. It is 13 pages long and quite detailed. I’ll give a bullet point summary at the end of this post.
This has been a labor of love. Brian needs total credit for the report. My original summary of the visit was a chatty narrative. Brian’s pre-med background made him perfect for reorganizing and more thoroughly reporting the science behind the discoveries. The final report is 90% Brian, 10% me. No wonder I keep scrambling the letters of his name and typing “Brain” LOL. As you read this 13-page missive, bear in mind that Brian is C-6/7, he typed the entire report one key at a time with a pencil tip. That’s how important this message is to him -- and to me.
I hope I speak for everyone on the lab trip when I say that we’ve been riding a high ever since we stepped into the RIRC. Once again, I found myself holding back tears of joy and excitement during our briefing. Sitting at a table with Maura Hofstadter and Hans Keirstead as he casually yet earnestly lays out his plan for “curing” people with SCI is electrifying.
RIRC hosts an annual meeting that is open to the public. This year’s dates are March 11 -13. For everyone west of the Mississippi that can’t afford a ticket to DC for W2W, try to make this event. It’s a fabulous opportunity to meet Hans, Maura and other scientists working on our behalf and hear first-hand about their work.
There’s a quote that I used to have pinned to my bulletin board before I was injured. It seems apropos now: "At first people refuse to believe that a strange new thing can be done, then they begin to hope it can be done, then they see it can be done, then it is done and all the world wonders why it was not done centuries ago." Frances Hodgson Burnett.
We’re just about there, to that place where everyone will wonder why it took so damned long to figure this thing out. In a very short time, the Kevin Everett’s of the world (people who regain complete function after a devastating SCI) won’t be news. It will be a wonderful day when there are fewer and fewer new members to CareCure.
I, like many others here have worried that us “chronics’” were going to be forgotten once “acutes” were treatable. I don’t worry about that any more. Twice I have sat with Hans Keirstead and looked into his eyes as he talks about treatments for chronics. It won’t matter how old the injury is, Hans is known to say. Even if our injuries are ten, twenty, forty+ years post, this treatment will return function.
I find myself daydreaming of hiking my favorite mountain again. I’ve been looking at cute shoes. I’ve been dreaming again; that’s something I shut off with my injury. I have HOPE. Another emotion I have not allowed post-injury.
Giddy, giggly HOPE -- backed by facts.
I will walk again. I will pee on my own again. I will feel the sand between my toes again. And, I will, as I have always dreamed, dance DANCE DANCE at my son’s wedding.
Here are those bullet points….
* The Reeve-Irvine Research Center (RIRC) has treatments in development that address all 3 phases of SCI; acute, sub-acute and chronic. Since SCI represents a population too small for drug companies to consider profitable, RIRC scientists, like Dr. Hans Keirstead, find characteristics that SCI has in common with other conditions. By grouping these conditions together, 2 important goals can be achieved for people with SCI:
o Create a large enough population to be profitable to big pharma;
o Shorten the trial length of each treatment. Instead of following a person with SCI for 10 – 20 years or more for data, they can use shorter trials in these other conditions.
* Safety studies with IP10 antibodies in ulcerative colitis should report soon. FDA approval for UC will allow this drug to be used off-label in Acute SCI. In animal models, as much as 70% return was noted when IP10 antibodies are given within 6 – 10 hours of SCI.
* In early 2008 Geron is planning to file an IND with the FDA and undertake safety studies using differentiated stem cells that form oligodendrocytes (these remylinate the spinal cord). The Phase I trial will be for people with new SCI, 1-2 weeks post injury.
Multiple studies addressing chronic SCI are underway at the RIRC:
* Animal testing with human embryonic stem cell derived motor neurons is underway. Human clinical trials await FDA approval – those discussions begin January, 2008. The first trials will likely be for infants with SMA-1, and then adults with end-stage ALS. This treatment is also for chronic SCI, without limit to the age of the injury. Decades-old SCIs may benefit from the treatment. The Geron experience taught Dr. Keirstead and team, which is moving the hESC motor neuron therapy forward, a great deal about the FDA approval process and they have been able to streamline their processes to move through the FDA system faster. This will be beneficial to the chronic trials.
* RIRC Director, Oswald Steward, is currently testing FDA approved drugs in chronic cervical SCI models. These drugs were developed for other applications, like heart disease and cancer, but have been found to be neuro-protective in fish models. Dr. Steward is testing 7 drugs now, but has many more ready to go. If any of these show efficacy in rat models, we can very quickly, in a matter of months, go to humans in a Phase II trial because the FDA has already determined them safe.
* Dr. Kim Anderson works with care issues such as sexual dysfunction and the metabolic effects of SCI that make us more prone to diabetes and other conditions. She discussed her current pilot study regarding diabetes in the SCI population.
* We have often talked about how funding is THE obstacle to curative therapies. Dr. Keirstead was careful to point out that funding is not the only issue. FDA approvals also play a pivotal role in how fast or slow a therapy will be tested.
* If FDA approvals go as planned, we can reasonably expect chronic SCI clinical trials in humans in 2-3 years with treatments potentially available in as few as 5 years. These predictions are dependant on several factors: funding; FDA approvals and efficacy in humans to follow previous animal models.
* www.researchforcure.org accepts donations for RIRC and Dr. Keirstead.
* Hopefully, everyone reading this will be inspired to raise funds and awareness for SCI research. Tania Cusack and Dr. Maura Hofstadter are the contacts at RIRC that can help with fundraising and research questions.
So, to correct this oversight, the report in all it's 13-page glory is attached below along with the introduction and summary. It was inspiring to visit with everyone at RIRC. They are certain and steadfast in their work. Quite a juxapostion between this post and my other recent post on suicide.
For many with severe disability the two ends of this spectrum are so much closer and entwined than others might think.
Remember, the report below was created for an audience of well-informed people with SCI. If you have any questions, if any acronyms are troublesome, let me know and I'll clarify. Happy reading.
__________________________
Attached is the report of our trip to the Reeve-Irvine Research Center and Dr. Keirstead’s lab. It is 13 pages long and quite detailed. I’ll give a bullet point summary at the end of this post.
This has been a labor of love. Brian needs total credit for the report. My original summary of the visit was a chatty narrative. Brian’s pre-med background made him perfect for reorganizing and more thoroughly reporting the science behind the discoveries. The final report is 90% Brian, 10% me. No wonder I keep scrambling the letters of his name and typing “Brain” LOL. As you read this 13-page missive, bear in mind that Brian is C-6/7, he typed the entire report one key at a time with a pencil tip. That’s how important this message is to him -- and to me.
I hope I speak for everyone on the lab trip when I say that we’ve been riding a high ever since we stepped into the RIRC. Once again, I found myself holding back tears of joy and excitement during our briefing. Sitting at a table with Maura Hofstadter and Hans Keirstead as he casually yet earnestly lays out his plan for “curing” people with SCI is electrifying.
RIRC hosts an annual meeting that is open to the public. This year’s dates are March 11 -13. For everyone west of the Mississippi that can’t afford a ticket to DC for W2W, try to make this event. It’s a fabulous opportunity to meet Hans, Maura and other scientists working on our behalf and hear first-hand about their work.
There’s a quote that I used to have pinned to my bulletin board before I was injured. It seems apropos now: "At first people refuse to believe that a strange new thing can be done, then they begin to hope it can be done, then they see it can be done, then it is done and all the world wonders why it was not done centuries ago." Frances Hodgson Burnett.
We’re just about there, to that place where everyone will wonder why it took so damned long to figure this thing out. In a very short time, the Kevin Everett’s of the world (people who regain complete function after a devastating SCI) won’t be news. It will be a wonderful day when there are fewer and fewer new members to CareCure.
I, like many others here have worried that us “chronics’” were going to be forgotten once “acutes” were treatable. I don’t worry about that any more. Twice I have sat with Hans Keirstead and looked into his eyes as he talks about treatments for chronics. It won’t matter how old the injury is, Hans is known to say. Even if our injuries are ten, twenty, forty+ years post, this treatment will return function.
I find myself daydreaming of hiking my favorite mountain again. I’ve been looking at cute shoes. I’ve been dreaming again; that’s something I shut off with my injury. I have HOPE. Another emotion I have not allowed post-injury.
Giddy, giggly HOPE -- backed by facts.
I will walk again. I will pee on my own again. I will feel the sand between my toes again. And, I will, as I have always dreamed, dance DANCE DANCE at my son’s wedding.
Here are those bullet points….
* The Reeve-Irvine Research Center (RIRC) has treatments in development that address all 3 phases of SCI; acute, sub-acute and chronic. Since SCI represents a population too small for drug companies to consider profitable, RIRC scientists, like Dr. Hans Keirstead, find characteristics that SCI has in common with other conditions. By grouping these conditions together, 2 important goals can be achieved for people with SCI:
o Create a large enough population to be profitable to big pharma;
o Shorten the trial length of each treatment. Instead of following a person with SCI for 10 – 20 years or more for data, they can use shorter trials in these other conditions.
* Safety studies with IP10 antibodies in ulcerative colitis should report soon. FDA approval for UC will allow this drug to be used off-label in Acute SCI. In animal models, as much as 70% return was noted when IP10 antibodies are given within 6 – 10 hours of SCI.
* In early 2008 Geron is planning to file an IND with the FDA and undertake safety studies using differentiated stem cells that form oligodendrocytes (these remylinate the spinal cord). The Phase I trial will be for people with new SCI, 1-2 weeks post injury.
Multiple studies addressing chronic SCI are underway at the RIRC:
* Animal testing with human embryonic stem cell derived motor neurons is underway. Human clinical trials await FDA approval – those discussions begin January, 2008. The first trials will likely be for infants with SMA-1, and then adults with end-stage ALS. This treatment is also for chronic SCI, without limit to the age of the injury. Decades-old SCIs may benefit from the treatment. The Geron experience taught Dr. Keirstead and team, which is moving the hESC motor neuron therapy forward, a great deal about the FDA approval process and they have been able to streamline their processes to move through the FDA system faster. This will be beneficial to the chronic trials.
* RIRC Director, Oswald Steward, is currently testing FDA approved drugs in chronic cervical SCI models. These drugs were developed for other applications, like heart disease and cancer, but have been found to be neuro-protective in fish models. Dr. Steward is testing 7 drugs now, but has many more ready to go. If any of these show efficacy in rat models, we can very quickly, in a matter of months, go to humans in a Phase II trial because the FDA has already determined them safe.
* Dr. Kim Anderson works with care issues such as sexual dysfunction and the metabolic effects of SCI that make us more prone to diabetes and other conditions. She discussed her current pilot study regarding diabetes in the SCI population.
* We have often talked about how funding is THE obstacle to curative therapies. Dr. Keirstead was careful to point out that funding is not the only issue. FDA approvals also play a pivotal role in how fast or slow a therapy will be tested.
* If FDA approvals go as planned, we can reasonably expect chronic SCI clinical trials in humans in 2-3 years with treatments potentially available in as few as 5 years. These predictions are dependant on several factors: funding; FDA approvals and efficacy in humans to follow previous animal models.
* www.researchforcure.org accepts donations for RIRC and Dr. Keirstead.
* Hopefully, everyone reading this will be inspired to raise funds and awareness for SCI research. Tania Cusack and Dr. Maura Hofstadter are the contacts at RIRC that can help with fundraising and research questions.
Voter in a Wheelchair
For the past two years I have worked with the Maricopa County Elections Department to help train election workers how to best assist voters with disabilities. I have tried to make the point that for some getting out and voting is monumental.
Recently I saw this commercial that makes my point far better than my words ever will. I am so impressed that this company used an actress with a disability and created an honest, authentic portrayal of a slice of life in a wheelchair. Notice the everyday obstacles; weather, transportation, thoughtless barriers to be overcome just to participate in ordinary activities.
Kudos to Liberty Mutual for such a bold decision.
Kudos to Maricopa County Elections Department for their efforts to make voting possible for people with disabilities. I am so very proud of the work being done and for those within the Elections Department, especially Tonia and Tammy who have patiently, tirelessly championed this program.
Recently I saw this commercial that makes my point far better than my words ever will. I am so impressed that this company used an actress with a disability and created an honest, authentic portrayal of a slice of life in a wheelchair. Notice the everyday obstacles; weather, transportation, thoughtless barriers to be overcome just to participate in ordinary activities.
Kudos to Liberty Mutual for such a bold decision.
Kudos to Maricopa County Elections Department for their efforts to make voting possible for people with disabilities. I am so very proud of the work being done and for those within the Elections Department, especially Tonia and Tammy who have patiently, tirelessly championed this program.
Saturday, March 22, 2008
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
synonyms see consider
Etymology: Latin contemplatus, past participle of contemplari, from com- + templum space marked out for observation of auguries
________________________________________________
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.
Subscribe to:
Posts (Atom)