Where have I been for the past eight months?
Part 2
When I went into the hospital, my main concern was the issues with my blood pressure and, increasingly, weakness in my hands. Apparently I had gone years with my old pump slowly leaking, to point that it required 1200mc/ml of baclofen to keep my legs under control. That’s a lot of baclofen. When they fixed the leak they had no real idea of how much baclofen I should be getting. Eventually I would learn I only need around 600mc/ml to keep my legs under control. At the time, I think that they left it at 1200mc/ml. This excess amount made me increasingly weak and my blood pressure dangerously low. I struggled to sleep at night. I could barely sit upright and began losing the limited function I have in my hands. I remember thinking as I left for the hospital that this might be it, the last time I see my home or my dog. They didn’t know how dire my thoughts were, but my parents tried to comfort me as I broke into tears.
While I was concerned with my blood pressure and my weakness, my doctors became increasingly concerned with something else – infection. During my first week in the hospital they would tinker with my pump settings, adjusting the level of baclofen. I pretty much dismissed any talk of infection. They had me on antibiotics and I figured that would take care of it. I was wrong. The infection was MRSA - a highly resistant strain. My new pump would need to come out.
Removing it would be no small task, given the amount of baclofen it fed directly to my spine. Removing it without preparation could put me in a coma from withdrawal. So the doctors spent a week slowly turning down my pump dosage while increasing oral methadone, baclofen, dilaudid and Valium. By the time the pump came out, I was spaced out on drugs. The nurses were amazed that I was still conscious given the quantity of drugs I was getting. I was conscious, but I had trouble holding thoughts in my mind and absolutely no attention span. Writing an e-mail to someone could easily take me three hours, two and a half of it spent staring vacantly at the wall or out the window. Days just seem to pass. I was, however, in a great deal of pain as well. Despite the drug cocktail my legs would seize up like never before - muscles would fight against one another spontaneously. For the first time, I could fully appreciate what my baclofen pump does for me.
It would be three weeks before the hospital’s infectious disease doctor gave the ok to put a new pump back in - this time on the left side of my abdomen rather than the right. Fortunately the surgery was successful and I healed up without it getting infected.
By now I had spent about two months in hospitals.
To be continued…
Where have I been for the past eight months?
Part 1
I wish I could say I was doing something important or nobel, like building houses in South America or helping cool nuclear reactors in Japan, but I can’t. I’ve spent the past eight months battling two consecutive unrelated health problems that ended up putting me in the hospital for 3 months each, with little more than a 2 month break in between.
As I know most of you already know, I’m a quadriplegic subsequent to a bicycle accident nearly 7 years ago. Because of the way my injury is, I had terrible spasms in my legs that began emerging a month after my accident. They were bad enough to pull me out of a wheelchair when triggered (usually by a light touch), bad enough that I couldn’t do rehab, and so bad that no amount of oral medication (baclofen) could control them. Then I learned of the baclofen pump. It’s an implanted device that sends micro doses of baclofen directly to my spine to keep my legs under control. Every three months I get it refilled with a needle. A small price to pay not to live a life bedridden. Every five years it needs to be replaced completely before its battery dies. A year ago, I was due for a new pump.
The operation couldn’t have gone easier. I went under, they took the old pump out and put a new one in. Two hours after the surgery, I was on my way back home. Fortunately, the area of my abdomen where the pump is placed doesn’t have much pain sensitivity, so the surgery hardly hurt at all.
So, I went back to my life. After a couple of months, I began to have increased spasticity in my legs and back. I finally went to the hospital when my blood pressure dropped suddenly. It turned out that my pump tubing either had a leak or had one created when the pump was replaced. One way or another, I had to go back in for surgery. Again, no problem. I was in and out the same day.
But, the following week, my blood pressure would skyrocket and plunge and I literally thought I was going to die. I briefly wrote out a living will and instructions for my family and friends. I was hospitalized again, during which time, they discovered that the pump had become infected.
This meant that I would have to have it removed and go for weeks with nothing controlling the spasms in my legs besides heavy doses of oral baclofen, Valium, methadone, and intravenous dilaudid for pain.
In this would be the start of my eight months of hell, during which time I would physically suffer more thanI did following my spinal cord injury nearly 7 years ago.
They say having a dog is a good way to meet women. It’s especially true if that dog uses Twitter.
I can’t exactly remember what motivated me to get a dog 20 months ago. I’ve always loved dogs and, prior to my injury, had a roommate who had the sweetest black lab named Sadie. I suppose I had always wanted to have a dog like her. So, nearly 2 years ago, I dropped a couple grand on a purebred and named her Sadie.
In order to have her in my apartment, I had to convince the landlord that she was a “service dog” and got a letter from my doctor (who will pretty much write me anything) saying that she was. She was hardly that, rambunctious and energetic, and quite a handful for me to take care of - I was pretty much her service dog. She eventually settled down, got really smart, and now actually does a few “service dog” things, like picking stuff up I’m too lazy to.
The best thing I ever let her have was my old iPhone, with which she uses to tweet and surf the web. One day, a couple months back, she was begging her followers to get her up to 200. One of her followers, @anonygirl, forwarded the request, and one of those new followers happened to be the woman I’d fall in love with. This woman happened to mention to Sadie that her cousin raised and trained service dogs, which led Sadie to mention that I’m in a wheelchair. And that’s what got the ball rolling.
In two days she will be coming to visit me. The two of us can hardly wait. I can’t wait to introduce you all to her. @nonlineardog can’t wait for the big treat she’ll be getting that day.
I don’t believe in stem cells
I know a couple of people who have spinal cord injuries who wholeheartedly believe in the potential of stem cells to magically cure them someday. One of these people has been injured since 1996 and has pretty much resigned himself to doing nothing other than watching TV and playing video games until the cure arrives.
Another is the son of a doctor whom I see. He was injured a week before I was when a wave crashed into him, driving his head into the sand, while at the beach. His injury is about an inch above mine and impairs him to a greater degree. He is active, but he and his father both believe there will be a cure someday.
Almost everyone who is newly injured insists that there will be someday. I don’t question the new guys, but I do question the lazy ones, specifically the former one I mentioned above. He happens to be kind of a jerk, so I don’t feel so bad when I ask him what he has read about stem cells. Many of those waiting haven’t read very much. They seem to take the promises at face value and block out anything to the contrary.
I should begin by saying that I do believe that stem cells could have a vital role in the treatment of diseases such as Parkinson’s and Alzheimer’s. But I can’t bring myself to believe they can repair a severed spinal cord.
The spinal cord is very complex, like a twisted bundle of fiber-optic cables. If you sever through that bundle, you’re going to have a mess of disconnections. If you’ve compressed several inches of your spine, that would be the equivalent of removing an inch or two out of that bundle. I just don’t believe that stem cells could reconnect things without running the risk of misconnecting and possibly leaving someone with greater disability or terrible nerve pain. Now that’s just my opinion.
What is actually proven in the laboratory with mice and dogs is that stem cells seem to provide a miraculous recovery in the days and weeks that follow an injury. After 13 months post injury, they’ve been proven to no longer have any success. Add to that the fact that the spinal cords of mice and dogs control walking in a much different way than the human spinal cord does. For them, walking is a more automatic function within the spine than it is with humans.
So what do I hold out hope for? Nothing much in the way of cures. I certainly wouldn’t be the first person to line up for them, due to potential side effects. For other spinal cord patients, I hope that there becomes more success in treatment within the minutes and hours following a spinal cord injury. When the spine is traumatized, swelling kills off many of the nerve cells. There is also a phenomenon in which the immune system actually begins attacking the spinal cord. In the future I hope that trauma can be limited to the initial damage and not spread.
Here is a sad fact for those holding out hope. Spinal cord injuries are very rare, about one in 300,000 people will suffer one in their lifetime. There are currently many more very good outcomes, meaning mortality, than there ever have been. People can suffer an injury, be stabilized successfully, receive necessary physical therapy, get a proper wheelchair and reenter society more so than ever before. This all means that there is very little financial incentive for developing a cure for such a rare disease. There is also much more money to be made in the lifelong treatment of people with severe spinal cord injuries than there is in curing them. This is the case with many other ailments where there is more money to be made in the ongoing treatments or medications than there is in a cure.
There’s nothing inherently wrong with this. That’s just the way business is. It’s the reason that much of the funding for such things comes from grants and charity rather than an R&D budget.
I remember when I first read about the mice and the 13 months. I had been injured about 11 months at that point. It shocked me to my core and literally knocked the wind out of me. I think that was the first time that I began to lose hope that I would ever walk again. It hurt so much at the time, but at least I was willing to take in the information rather than staying willfully ignorant and sitting around waiting. It also may have kick started me to begin looking at things a bit differently. If this was how things were going to be, I’d damn well better find a way to make it work. And so that’s what I do and that’s what I continue to do.
Quadriplegic Did You Know - Laughter
Did you know that one of the first things you lose when you’re paralyzed is your ability to laugh like you used to. People don’t realize everything that goes into a laugh. Your abdominal muscles all the way up through your chest are involved. You use them to produce a hearty belly laugh. Most of those muscles are paralyzed with me except for a couple of abdominals that come in handy when I need to sneeze or cough. But when I laugh, I’m usually just smiling and laughing on the inside - sort of a quiet laugh. Sometimes it’s literally sort of a “ha ha ha”. Despite that, a sense of humor goes a long way during rehab and in life.
Click on the recording below to hear the laugh that I’ve had since I was injured.
Things to be thankful for - my hands, as limited as they are. They could be better, but they could be much worse. I did a video in the past about how I drive, this one’s about how I use my hands. The thing I fail to mention is that because of my incomplete spinal cord injury, I can still feel my fingers and much of my body even though I can’t move it. One frustrating thing is that I actually have full use of my left toes (reeal useful!).
This is the last picture I have of myself standing. I posted it here before, but I thought I would post it again along with some of my thoughts from last night. The picture was taken in late July 2004 at the Franklin Roosevelt Memorial in Washington DC. I’m standing next to Lynn, the love of my life, whom I had only been dating for about six months.
I sort of think of this photo is being the last moment that I was on two feet. I remember the moment the picture was taken. We handed off the disposable camera to a stranger and he took our picture. I never saw the picture until I was in the hospital a few weeks later. Franklin Roosevelt was my favorite president and I find it ironic that the last picture I have of myself standing is in front of the president who became crippled as an adult and spent his life in a wheelchair.
The reason that all of this has gone through my mind is because I drove through a part of town yesterday and over the crosswalk that we crossed to get to the Memorial. It had been the first time that I’ve been that close. It may long so much to be back there, carefree, with her.
She left me right around this time five years ago, not long after the elections. I was in a hospital in Atlanta and she was back in Greensboro, North Carolina where we lived. About a month earlier, before our trip to DC, we had a conversation that all couples have at one point: “would you still stay with me if something terrible happened?”
Now, think carefully about the person you’re with and how much you love them and how much they love you. Because, statistically speaking, there’s only a one in nine chance that you or your partner would stay after a catastrophic injury. Shortly after she broke up with me, I went to the counselor at the hospital and learned that 85 to 90% of couples, married or otherwise, break up after an accident. It’s inevitable. I used to resent her so much for leaving. It stayed with me for years. Hearing my side of the story most people would condemn her, until I stop them and tell them, “I would’ve left, too.”
I would’ve. People will tell you, “you’re still the same person.” But that is bullshit. How could you possibly be the same person inside after something like this? Faced with everything that she was faced with, if it were me, I probably would’ve handled things the exact same way that she did.
But you move on. Physically I may be weaker than I’ve ever been any point in my life, prior to my accident, but mentally I am stronger, more patient, more sensitive, and more understanding than I’ve ever been. So now, when I think about it, if I was in a relationship and something terrible happened to them, I think I might stand a chance of being in that one of nine people who sticks things out.
“About Rehab” - a 90-second short film I made about, guess what? How I felt about rehab.
I mentioned that I went there last month to visit. As I was leaving, this song came on my iPod and served as the sound track for my thoughts at the time. I thought about how I would put it all together on the drive back. This is it.
Okay, true story… and untrue…
I always get asked what happened that landed me in a wheelchair. It’s the same every time.
Them: Were you in a car accident?
Me: No, a bike accident.
Them: A motorcycle or a bike bike? (yes, everyone says bike twice to clarify)
Me: Just a bike bike.
Them: Were you hit by a car?
Everyone is naive as to how easily one could be paralyzed. It’s amazing more aren’t. Statistically, you have a 1 in 300,000 of having a spinal cord injury, and if you do, there’s a 70% chance you’ll be a quadriplegic like I am - the neck is the most vulnerable part of your spine.
But I digress. I once came up with a fictional account of how I was injured, and I wanted to tell someone that I wouldn’t ever see again. As I mentioned before, I was in a nursing home for a bit and they don’t have x-ray facilities in-house, so when one is needed, they call an x-ray tech with a portable x-ray machine. I had pain in my knee and some swelling, so they called for a tech. He’s the one I laid my tale on.
Me: How did this happen to me? I don’t remember.
Him: What do you mean?
Me: “I don’t know how it happened. One day, I woke up, face down in the woods off the Potomac and I couldn’t move. So I screamed out as much as I could - my lungs were very weak. A couple on a walk found me, and I was rushed to the hospital. When I got there, they did an x-ray and discovered that I had had spinal stabilization surgery with plates done and fresh scars on my neck. My family was called and I learned that I had been missing for four months. The last thing I remember was leaving work on August 6th.”
Now, I made a point of talking with a straight face and little affect. He was riveted. After the x-ray, I heard him faintly talking to the nurses down the hall, so I’m not sure how long my story held up. I hope he still believes it to this very day.
The flap of a butterfly’s wings
Sometimes the smallest of things can trigger much larger events resulting in much larger consequences. I broke my neck August 6, 2004 on a bike track in Burlington, North Carolina, but strangely, the event that triggered this occurred on a bike track in Pennsylvania just the few days after September 11, 2001.
2001 was the year that I returned to bike racing. I had taken four years off midway through college and after. I had raced professionally prior to that layoff and was returning to the sport as an amateur - a sport that had become much faster and four years younger than I had remembered. I was now 26 years old, racing in the 19-27-year-old category. It was very competitive, but I managed. What I lacked in strength I had trained for when I was younger, I made up for with a smooth pedal stroke and efficient technique over the jumps and through the turns. By midway through the summer, I was regularly winning local races and my starts out of the starting gate were better than they had ever been.
In my long racing career up to that point, I had won state titles and championships, a national race of champions, and a national top 10 in my age group. The one, relatively minor, title I have yet to attempt to win was a Gold Cup championship. That summer I set my mind to doing so. I rode and trained and managed to stay healthy throughout the summer. I arrived in Pennsylvania to find a track to my liking, wide and downhill with perfect turns and smooth jumps. I won the pre-race on Friday night. I dominated the Saturday national from qualifying though to the main event. Sunday was the Gold Cup event. I was a bit stiff and sluggish, given a 9:30 AM start. I still managed to qualify for the main event with a second place in the first round. The main event was several hours later and I was not the least bit anxious. I was awake and loose and couldn’t wait to take the start.
On the starting gate, I was focused and not the least bit nervous, and when the gate dropped, I cranked out with perfect timing and had everyone beat after the first two pedals. But as I pushed down for a third stroke, my foot slipped off of my pedal and everyone jumped ahead of me two bike lengths by the time I was back on. Despite this, I managed to work my way back to the front only to lose by half a bike length in the end.
It hurt, and I got over it, but I insisted that I would come back the following year and do it again. Midway through the following summer my season ended when I crashed headfirst, extended my arms and dislocated my shoulder. This event, too, would also play a significant role in breaking my neck two years later.
The following year, I was all set to get ready for that event and went down to the track in Charlotte, North Carolina to practice a week before the Gold Cup was to be held there. I ended up crashing, breaking my hand and bruising my ribs.
2004 was to be the year. I had been riding well, and I wasn’t specifically training for the event and not quite taking it as seriously as I had previous years. I was just enjoying racing. I had taken a month off, but got back on the bike as the event drew closer. August 6th was a beautiful night and I had arrived at my local track following a race that had just finished. I was there with the sole purpose of training to win the title that had eluded me with the slip of a pedal three years earlier. I lost control down a third straight away, over a rhythm section of jumps and began to loop out backwards. At that moment, my instinct was to let go of my handlebars and put my arms out to break my fall. But then, in the time it takes a butterfly to flap its wings, I thought about the crash that dislocated my shoulder. I had extended my arms to break my fall and ended up needing surgery. With that in mind I decided it would be best for me to hold on to my bike, tuck my head down, and just brace for impact. This resulted in exposing my spine to take the brunt of the impact, which it did.
Following a spinal cord injury, everyone thinks about what could’ve been. “What if I didn’t drive while drunk?”
“What if I didn’t dive into the shallow end of the pool?”
“What if I didn’t instigate that fight?”
For me, I don’t think about it much anymore, but when I do, I think not only of the accident itself, but of the events leading up to it. I think about how single-mindedly I pursued a relatively minor title. I just needed to prove to myself that I still had it in me. The accidents and the surgery likely would have convinced me to retire if only I had just attained that one elusive thing. If only my foot had just stayed on that pedal.
Latent Anger
You know how there are certain things everyone says they wouldn’t wish upon their worst enemy? That’s often true until latent anger sets in following a catastrophic loss. After I broke my neck, I felt the same way… for a while. The suffering and hallucinations I experienced in intensive care felt like torture, but it was at the hands of doctors who were ostensibly doing what’s best for me. I became sympathetic to people who had undergone actual torture, in war or domestically, at the hands of a sadist rather than in ICU. As I would lie in bed in recovery, I had high hopes of a full recovery. I could feel and move my feet, and I had an amazing woman who swore she’d stay with me through it all.
Six months later, she was gone, I wasn’t get much more function back, and was living in a nursing home. At first the anger took a seemingly benign form - I’d see someone else in rehab with an injury worse than mine and was glad it wasn’t me. Then I’d meet people with injuries not as bad as mine and I’d get jealous, maybe even a bit angry inside, when I’d learn they were doing something careless like driving drunk or diving into shallow water.
As time passed and hopelessness set in I began to think dark thoughts. Surrounded by suffering old folks at the nursing home, I’d think that I’d be willing to put any one of them out of their misery with my bare hands if it would get me my body back. I would see an injury on a football field or see a news report of an accident and hope the worst, that maybe there would be one more person in the world who would lose everything like I had. Out in the world, I’d see happy couples and wonder how happy they’d be if this had happened to them. I’d see kids doing tricks on skateboards and bikes without helmets and think about how I wore a helmet and didn’t rode over my head (although I always did as a kid).
But time passes, and the anger fades. Four years later, I was telling my therapist that I still sort of hoped to see a spinal cord injury when a pro football player was injured on the field for a while. Part of it is latent anger, but part of it has to do with wanting the world to be exposed to spinal cord injuries, wanting a second coming of Christopher Reeves, wanting the world to see that most times, a full physical recovery isn’t in the cards.
One of the things that has helped me resolve some of these issues is an 18 year old named Ricky. He worked in a bike shop I go to for wheelchair adjustments, and was everything I’d been looking for in a catastrophe candidate - he was young, attractive, reckless, had a beautiful girlfriend, and was taking a year off to goof around before college. A year ago, he was doing a rail grind down the railing of a flight of stairs on his bike. He wasn’t wearing a helmet, but that ultimately didn’t matter given the fact that, when he came down head-first, the crushing of his cervical vertebrae absorbed all the impact, protecting his brain, but leaving him a C4-C5 quadriplegic only able to move one arm, but not the hand. He’ll never feed himself, bathe, drive a car, proficiently use a computer, spend a day alone, or do many other things again.
I now think of him every day. Whenever I struggle to do anything, he comes to mind. It’s interesting, because I’ve never been able to embrace religion, never felt a daily presence of God in my life - I’ve wanted to, but have never felt it. But recently, the one thing that seems to get me though my struggles or appreciate what I have is thoughts of that poor kid. I’m for once able to step outside of my own circumstance and mourn and genuinely hope for someone else. So while I still, admittedly, have some issues, I consider myself a recovering quadriplegic - my heart and my mind continue to heal.
I injured my shoulder the other day…
I injured my right shoulder the other day when I fell out of my wheelchair (down a slight grass embankment). I think I tore my deltoid a little bit. I know this because, A. when you have very few muscles working to begin with, and you go through rehab, you learn to know what muscles you have, and B. I destroyed my left shoulder seven years ago in a bicycle crash where I tore my deltoid, shoulder capsule, rotator cuff, bicep tendon and broke a little piece of bone. Crashing hands-first is a good way to hyper-extend and/or dislocate your shoulder. I think I hyper-extended my right shoulder when I fell the other day.
So I’m taking it a little bit easier, not using my right arm as much and not pushing around with the dog as far. Today I began thinking about how a minor shoulder surgery would affect my life today, versus the extensive one seven years ago. Here is how I think the experiences would be different:
Seven years ago - Left shoulder - able-bodied
I had severely dislocated my shoulder, but was able to function every day for four months before I finally had surgery on it. Basically I was limited in what I could do overhead and in physical activities. Otherwise, I was able to lug around video equipment and do my job without limitation. My surgery lasted five hours, and after an hour of observation, I hopped in my mom’s car and she drove me home. Once I was at home, I sat on the couch fighting nausea while mom cooked me meals and watched movies with me. I went back to work the next day and was able to drive and work as a video editor using my right, predominant, hand. After a month, I was able to take my arm out of the sling, and went through three weeks of rehab, followed by another month of home exercises. During that month, my arm was weak, but I was able to work 100%. It took another three months before the shoulder felt good as new.
Hypothetical surgery today - left shoulder - quadriplegic
If I had even a minor dislocation that still needed surgery, I would not be able to push my wheelchair and would have to dust off my old power chair to use instead. Prior to surgery, I would still be able to use my computer with my left hand (which, after my spinal cord injury, is now my predominant hand). I would not be able to do transfers to and from my wheelchair, and would need somebody to help me with that. That also means I would not be able to drive. If I went in for surgery, I probably would spend the day in the hospital, just as a precaution. I would probably be brought home in a medical transport, to avoid the need to get me in and out of the car. Once at home, I would probably spend a week in bed to avoid too much movement. Once out of bed and in my power chair, I would have a hard time doing things with just my right hand. As it stands right now, I don’t use it for much. I would probably be able to use my computer once I get used to it, but I don’t think I would be able to prepare meals and do much without the aid of my left hand. I would definitely have to have an aide on duty all day. After a few weeks, my arm would come out of the sling, and I would go and do rehab. I would need to have someone else drive my van while I rode in the back. It would take a few weeks just to have full range and a moderate amount of strength back in the arm, not to mention the fact that I would be weak in my right arm from being in the power chair and not pushing around. After a few weeks of rehab, it would probably take months and months of strengthening and pushing my chair, and relearning how to transfer before I was back to 100%.
So, as I was walking my dog today, and feeling the sting in my shoulder, I thought of this scenario, and then thought “maybe I should take it easy for a couple of days”.
Confessions of a nonlinear quadriplegic
Oh, did I forget to mention I’m in a wheelchair?
It’s been a long time coming and I’ve been very hesitant to come out of the closet, as it were, regarding this. But I’ve come to know you all seemingly so well over the past eight months or so, but I feel like I can reveal this part of myself - something only four or five of you know until now.
I was paralyzed in a bicycle accident nearly 5 years ago when I was 29. I damaged C5 and C6 of my cervical vertebrae, which impairs the use of my fingers and everything from the chest down. Even though I’m not crippled like Christopher Reeve was, I’m technically a quadriplegic as all four of my limbs are impaired. I’m still able to use my arms and hands, I’m able to drive a van, raise a black lab puppy (@nonlineardog), play wheelchair rugby, and work.
Before I was injured I owned my own business and worked as a filmmaker and video editor. As most of you know I currently work as a web designer, a career on looking to get out of. I think I want to go into teaching - something more emotionally rewarding and fulfilling.
I don’t want this to change anything. I don’t want sympathy or pity. I don’t want admiration. I just want you all to know something that is a significant part of my life. I’m keeping this brief, but I want you all to know that 
nothing is off limits when you talk to me. I can comfortably talk about my injury and my life before the accident all day long.
You all are a great crowd and I’ve enjoyed getting to know you all immensely, 140 characters at a time.
Jon
PS - You all better star the shit out of this.
