Five Years On…

AB32 Comments

I have a very vivid memory of the first day of school in fourth grade. I remember the begrudging acceptance that summer vacation was over, the yearning for just one more long day spent outside and out of the confines of school, and looking up at the calendar on the wall, next to the teacher’s desk, with SEPTEMBER folded open. I remember thinking to myself that it could literally be an eternity before all those ensuing months would pass, the calendar would flip to June and the liberation of summer would commence anew.

I don’t know about all of you but for the elementary school me, nine months felt like—and turned out to be—a very long time. By the time the following summer came, it seemed like I had been through endless glances at the calendar and a brutally long build up to the end of the school year.

We all know that as we get older, time does indeed move faster since a week, month, or year represents a smaller and smaller fraction of our full lives.

Today marks five years since my life was turned upside down by a spinal cord injury. Five years since everything I knew about my body and how I interacted with the world was broken, shattered, and left to be pieced back together (literally and figuratively).

Five years. 260 weeks. Half a decade. Has it felt like a long time? Or has it gone by fast? The answer, as you can probably imagine, is both.

On the one hand, five years have gone by surprisingly quickly. The weeks and months do seem to pass faster and faster every year. And I can very clearly remember my life before July 8, 2012 and it doesn’t seem like a long time ago at all. Maybe it’s because nearly every night in my dreams I walk, run, play sports and have more control over my body than I do in waking hours. Sometimes, in a lucid dream, I realize what’s happening and I tell myself to savor every second of it, knowing that I will inevitably wake up and go back to a very different reality.

But on the other hand, five years has also felt like a five-term life sentence in prison. To think that I’ve woken up 1825 days and encountered this body is still terrifying. To recognize how many singular moments of struggle, pain and discomfort I’ve experienced is mind-numbing and overwhelming. I can’t even conceptualize how many times I’ve had the wish, prayer and desire to somehow get rid of the impacts of this injury and go back to a day-to-day life that doesn’t need to be planned around managing pain and obsessively analyzing sidewalks, curbs, stairs, ramps and building access. Thousands of times? Millions? Possibly.

When it comes to the time frame of my injury—and especially when I’m approaching an anniversary—people often ask me two related questions:

1. Has living with this injury become easier at all?

2. Have I gotten used to it?

The short answer to both questions is an unequivocal NO.

I’m sorry if that’s not what people want to hear but it’s the truth. I’ve heard other people say, “oh you’ll get used to it” or “it’s not that bad once you figure things out.” In fact, I’ll never forget the hospital worker who told me—just days after my surgery—to look at the bright side: “At least when you go to a baseball game or crowded event you’ll have a comfortable chair to sit in and won’t have to stand in line!” (How or why the hospital employed and allowed that person to speak to people early after their injuries is still beyond me…)

I know of many people who’ve suffered spinal cord injuries who have said that things did get easier after a while, that they did get used to using a wheelchair and while I respect each person’s individual opinion and experience, that approach has not worked for me, and I’m not sure it ever will. I’ve been told I’m hard-headed (true); I’ve been told that my effort to improve my body and work on my recovery is simply delaying the inevitable; and I’ve been told that this injury can’t be beat, so the sooner I “accept my current condition”, the happier I’ll be.

Bullshit.

Yes this recovery hasn’t gone as fast as I would like. Yes I haven’t reached all of my physical or functional goals yet. And yes there is still a long ways to go. But if I had listened to those voices early on, there’s no way I could have stood up and asked Brita to marry me. There’s no way I could have gained enough strength in my abdominals, back and core to train for and complete a five-mile swim. And there’s no way I would have continued to gain physical breakthroughs and new neurological connections in my third, fourth, and fifth years after the injury, long after that two-year window when the doctors said the healing would surely stop.

The truth is that it’s because of, not in spite of, my commitment to my objectives and diligence that some things have gotten easier. But while certain challenges have lessened or been addressed with novel solutions, new challenges have always arisen.

Reducing pain or discomfort in one part of my body has resulted in new pain somewhere else. Because I have sensation all over my body, I am not disconnected from my lower body and know that being in any one position is uncomfortable and unwise. I still have to plan every single day around minimizing physical pain and how much time I spend in the wheelchair.

The psychological burden of dealing with this injury has become more manageable, but by no means would I say that it’s something I’ve become used to. The truth is that it sucked five years ago when I woke up in the hospital, and while many things have changed and improved, it still sucks today. Again, I’m sorry if this isn’t the narrative or story that people want to hear but I’ve only been sincere and genuine in this blog and so I share all of this with the utmost honesty.

One thing I admit I have learned and accepted is how to find joy and embrace moments of happiness despite all of my day-to-day challenges. For the first few years after my injury, I lived with a mindset that I could not and should not allow myself to feel happiness because that would somehow concede and accept defeat. I’ve learned—through the wisdom, love and support of my family, friends and most of all my incredible very-soon-to-be-wife Brita—to allow joy and happiness back into my life.

I no longer push away those experiences. I no longer think of joyful emotions as distractions from my commitment and pursuit of a healthier and stronger body and a more fulfilled life.

So where do all these ramblings leave me right now, on this five year anniversary and moving forward?

I am still working just as hard as ever on improving my condition. I refuse to live a life of perpetual discomfort and pain. I refuse to accept externally imposed limitations and societal and medical customs of what living with a disability should be like. I refuse to abide by a narrative that “it’s all ok now,” that “things aren’t so bad,” that time has healed all the wounds.

I will continue to listen to my body first and foremost. I will work hard and keep striving for new connections and improvements. I will push myself as long as the fire in me burns (and it’s burning as strong as ever now). I will rest when it is needed and beneficial and I will continue to carve out my own path to a better, healthier, more functional, more fulfilling life.

I am still bitter about the prognoses and outdated expectations that the medical establishment set for me. Instead of telling me that all the healing would occur in one year or two max, that after that I wouldn’t get better, I wonder where I would be now if they had provided more encouragement, support and validation for the potential to continue improving for many years to come. Although I never took them for their word or accepted their arbitrary prognostications, I know that those words impacted me profoundly.

In addition to the pursuit of my personal recovery objectives, I will continue to do everything I can to educate, inform, and alter the ubiquitous approach that our medical system still teaches and promotes to people dealing with spinal cord injuries. There is no place for a method that takes away hope and possibility from so many people in their most vulnerable time. This must change.

The human spirit is strong. The will to work towards something seemingly unachievable should not be discouraged or doubted. And our individual and subjective understanding of time, of what days and months and years mean to each of us, and what we each want to do with our limited time on this planet, should be explored and revered.

I never thought I could make it through five years of living with this injury, but I have. And I hope to continue on my path for another five, fifteen or fifty years to come.

Making Magic in Maui (continued)

AB27 Comments

Following up on my last post, I want to provide a bit more info and specifics on the rehab I did in Maui with Alejandra.

In my last post, I mentioned the emphasis on fascia lines and I want to expand on this a bit more. From what I have encountered, the conventional approach to muscles, ligaments and tendons is to think of them separately, evaluate the function of each specific part and to target that muscle (or one or two surrounding muscles) and strengthen, stretch, or stabilize that area in order to achieve the goal of improving it. For example, your biceps muscle in your arm performs a specific function, namely, to curl your forearm up towards your shoulder. Simple enough. But what about all of those other muscles that connect to your biceps? Or the muscles that connect to the muscles that connect to the biceps? How is it that some people may feel pain in their right shoulder which stems from an aggravation in the left knee?

Alejandra – and the growing number of practitioners who are incorporating the theories of fascia lines and the interconnectivity of muscles and fascia into their practice – approaches the body differently, especially when it comes to a Spinal Cord Injury and the damaged neural connections throughout the body.

On the very first day, Alejandra immediately recognized what abilities I DID have and what muscles I already had under control. She quickly assessed that if I engaged the parts of the body that I could control, then I could also engage connected muscles, nerves, and fascia and establish new neural connections. And that’s exactly what happened.

Over the course of just two weeks (which in a very slow SCI recovery world is like lightning speed), I was able to establish new connections, primarily with my abs and core. That means that I can now achieve a strong contraction of my abdominal muscles, by virtue of engaging the muscles in my lattisimus dorsi and targeting the fascia lines that run from the base of my skull, down my neck and upper back, wrap around my abs and down into my hips, thighs, and legs. I can’t overstate just how remarkable this is!

In this approach, the belief is that there are more neural connections that run through the fascia connecting our muscles than the muscles themselves. By acknowledging the potential power of Neuroplasticity (a concept I’ve discussed before, which is essential to my recovery), I am rewiring those damaged neural connections and finding new ways to connect signals from my brain to parts of my body that I previously could not move.

I realize this is a bit technical and might be hard to conceptualize for many readers, but I urge you to keep an open mind. It’s astounding what I was able to accomplish in such a short amount of time, and the progress I’ve continued to make because of the exercises I did with Alejandra. I’m including a couple more videos below.

In the following two videos, I’m lying on my side, with good spine alignment (something Alejandra emphasizes frequently) and the movements are both in a horizontal plane, that is, they’re not going with or against gravity which allows me to feel a better connection with my legs. In both instances, although the person is doing the movement for me, my leg would react, the muscles would contract and I was able to feel a great connection to my glutes, quads and legs.

In this last video, my spine is again in good alignment as the ball and the roller behind me are prompting me to sit straight, I’m using my arms to stabilize my core and the result is a fantastic connection to my legs that are doing this fast and fluid movement. This was a great exercise.

I’ve tried my best to highlight the unique nature of the work I did in Maui and show how this has helped me. It’s tough to put it all into words or images but hopefully I’ve provided a sense of why I found this therapy so beneficial.

100% Active mental effort

AB31 Comments

I want to attempt to explain one of the more nebulous and perplexing aspects of my recovery. I’ve been wrapping my head around this for a while now but I haven’t quite figured out how to put it all into words and hopefully make it understandable for people without a Spinal Cord Injury. There is a significant process that is noticeably more difficult for me now than before my accident: the monumental, almost overwhelming mental effort that I have to put into all of my rehab.

Every exercise, movement, or activity that I do involves a massive mental commitment from me. This is nothing like what most of us are used to doing when we lift a weight, take a step, hold a stretch or pedal a bike. As an able bodied person, those actions are performed subconsciously. You don’t have to tell yourself and instruct seven different parts of your arm how to curl a dumbbell… you just do it. You don’t have to close your eyes, channel your breathing, try to contract one muscle while relaxing another just to take a step when you’re on a run… you just place one foot in front of the other and continue on. Not so with a Spinal Cord Injury.

Everything I do involves me REALLY thinking about it, specifically when it comes to those parts of my body that are most damaged by my injury and not functioning properly. The nerve signals just aren’t getting through like they used to so it takes me that much more effort to try to engage a muscle that hasn’t effectively received the signal to engage. This is what makes an injury to the nervous system so debilitating. It’s not just a matter of effort. If it were, then the many hours a day I spend on my rehab would have much quicker results.

I think back to what it felt like to exercise before my accident and it all just seems so easy to me now! I didn’t really have to think THAT much about what I was doing. I would just DO things, perform movements, complete activities, and ultimately I’d get stronger and fitter. I was never mentally drained from going on a run or biking half the day because I could do that repetitive motion subconsciously and with little to no mental strain, all the while listening to my iPod or chatting with a friend. Nowadays, if I don’t give 100% of my mental attention and focus to the specific movement I’m doing, not only will I have little to no chance of effectively completing the movement, I will finish the activity without any sense of accomplishment.

Another way to put it is that those muscles that I’m trying so desperately to wake up and reestablish the connection with will only have the teeniest, tiniest chance to get that signal from my brain only if I try really, really hard to break through the neurological impasse that’s taken root in various parts of my nervous system. This whole process has educated me greatly on how incredibly electrical our bodies are. No matter how big or strong our muscles may be, nothing can happen unless the wiring that’s distributed throughout the body is functioning properly. As a result, I often have to close my eyes and remove all visual stimuli in order to be able to give sufficient mental awareness and energy to what I’m doing.

This may seem arduous and exhausting, and it was at first, but now I have to admit I kinda like it. It makes me very present in what I’m doing, it forces me to tune everything else out and focus fully on the task at hand and although I wish I could see the results more quickly than I do, I know that this tremendous effort is what will sustain my recovery and continue the healing that I so desperately strive for.

Repetitions and rewards

AB30 Comments

As a lifelong athlete, I’ve always understood the benefits of working hard, challenging myself physically and realizing the results of my actions in a relatively short amount of time. I remember being nine years old and amidst my attempt to play every sport under the sun, I became more interested in soccer and decided to step up my game. Like any soccer player, I inherently wanted to ignore my left foot and exclusively use my dominant right foot to dribble, pass and shoot.

One day I was kicking the ball around with my father and he told me, “Son, you don’t want to play like a one-legged chicken. You have to use your left foot and train it to be as good as your right. Only then can you be a dominant soccer player.” It wasn’t easy at first, but I heeded my dad’s advice and forced myself to use my left foot as much as my right. After some time, and many repetitions, I began to notice a difference. My left foot had improved and while it could never be as good as my right, I had engrained a physical knowledge in my soccer skills for years to come. Up until the last time I played soccer, just two days before my accident, I was a right-footed player with a strong left foot.

Another example is when I decided to train for my first triathlon a few years ago. I was a strong enough cyclist and runner but I hadn’t swam since I was a kid and I was mortified at the thought of swimming a long distance. The first time I jumped in the pool and dusted off my freestyle stroke, I lasted maybe six minutes before I was panting and wheezing like a lifelong smoker who had just sprinted a mile. I was frustrated and disbelieving that I could be in good shape yet struggle so much with this new activity. Long story short, I kept at it and although the next few times were almost as painful as the first, I slowly but steadily got better. Soon I could swim ten minutes, then twelve, then twenty and before long, I was able to stay in the pool consistently swimming laps for over forty minutes. (Full disclosure: when it came time for my triathlon, I got in the water and embarrassingly swam so crooked that I ended up way off course, and needed the officials in the boat to catch me and send me back on track. I finished the swim nearly last, but at least I wasn’t out of breath. Thankfully I made up for my poor swimming during the bike ride and the run, and finished my first triathlon in the top ten of my age group.)

Now I’m still aggressively doing rehab for many hours a week and my exercise regimens have become more intensive and (hopefully) more beneficial. But I don’t realize those physical rewards as quickly as I’m used to and that becomes extraordinarily frustrating. So much of my therapy is based on repetition. The theory is that by repeating a motion or movement over and over, we can rewire and retrain the brain and spinal cord to relearn that movement again.

Also, in order to target muscles that I don’t have motor control of, I do exercises that essentially force these muscles to engage. For example, my abs are still too weak to do a situp and the neurological connection to them is still impaired (i.e. if someone punched me in the stomach, I couldn’t flex or tighten my abs). So I do assisted situps, using my arms to pull myself up and consequently forcing my abs to contract. Yes my arms are doing most of the work at first, but over time, those abs have gotten a bit stronger and I use less and less of my arms.

Over time. That’s the problem. I’m used to seeing results quickly. I’m used to hard work and effort trumping fatigue and being able to realistically overcome physical challenges and limitations. I’m used to stories of friends who had never run long distances being able to train themselves over a few months to run a marathon. But with a Spinal Cord Injury, it’s just not the same. I can work as hard as possible (I like to think that I do) and push myself to the absolute maximum every time I’m doing an exercise, but improvement and progress shows itself so, so slowly that it’s painful. I give every rep 120%. I close my eyes and I focus and visualize and push and pull and twist and lift and grimace until my muscles burn and my brain is tired, and I still try to keep going. But ask me if or how I’ve gotten stronger in the last week or two, and I usually won’t have a good response.

To end on a positive note, as difficult as this process is, the reality is that things have gotten better and stronger, it just takes so much time. I can’t imagine what this rehab would be like if I wasn’t already an athlete or if I didn’t have a good understanding of body awareness and how to challenge myself yet remain within my limits. At least with these things going for me, I trust that my body instinctively wants to become stronger and I fully believe that my body desperately wants to walk again, because that’s what is natural and what it’s done for so long. With that trust and knowledge, I will continue to work hard and notice improvements, slow as they may be…

Ekso-skeleton walk

AB59 Comments

Step into a suit, strap in, stand up, and walk. That’s exactly what I did last week for the first time. I had heard a lot about the exoskeleton made by Ekso Bionics, especially from a number of other people with Spinal Cord Injuries, and I had been interested in trying it out for myself. Finally, after many weeks, it was time for me to try one of the most novel and innovative forms of treatment for SCI.

Like so many cutting edge technology companies, and fortunately for me, Ekso Bionics is based in the Bay Area, just 15 minutes from my home, in a spacious, futuristic, movie-set-like warehouse where they do everything from design to marketing to engineering to manufacture of this incredible product. Upon entering Ekso, I had the immediate sense of being surrounded by scientific intelligence, and the feeling that big things were happening here. You’re welcome to check out their website to learn specifics but the very brief overview of Ekso is that they’re basically split into developing two types of Ekso Bionic Suits: one for rehabilitating people with SCI and other disabilities and the other for military purposes (an able-bodied person being able to wear the suit and carry hundreds of pounds of weight on their body). Both purposes serve to advance their mission of developing “the most forward-thinking and innovative solutions for people looking to augment human mobility and capability.”

After conducting an evaluation of my physical condition, including precise measurements of my legs, hips and feet, it was time to try it out. It only took a few seconds to strap me in before I was standing upright in the most effortless way I had experienced since my accident. Usually, when I do standing or walking exercises, I have to support much of my weight on my arms and shoulders but with Ekso, this wasn’t the case. I felt upright and fully supported, yet agile and light.

So how does it work??? There are no electrodes or implants or anything that complicated. Basically, to take a step, I put my weight into one leg and lean in that direction and once I pass that “sweet spot” where my balance has shifted but I’m not falling or swaying, the opposite leg will take a step. The suit has sensors in my feet recognizing how much weight is in each foot, so to step again, I lean on the opposite leg and again, as soon as I pass that threshold where enough weight is off the back leg, it takes a step. I started with a walker in front of me to support me but quickly moved on to using crutches which was a bit more tricky at first but easier once I got the hang of it. It didn’t take long to figure it out, so much so that after a few laps, I asked the guys when I could start sprinting with the suit.  🙂

After more than an hour of standing and over twenty minutes of walking, I barely felt fatigued. Post Ekso statsWhile the process of walking feels a bit unnatural (you really have to lean pretty far in one direction to make the opposite leg to take a step), the ease and smoothness of walking with Ekso is an unmatched feeling. Thankfully, as an Ekso test-pilot, I will be able to use the suit again and help them as they continue to develop and improve their product.

Much like another incredible piece of equipment that I used recently (the lokomat), Ekso is a marvel of human engineering, designed so precisely and carefully that it will undoubtedly be a pioneer in the field of SCI rehab. I’m thrilled to be a part of the Ekso community and will post and update my progress as I continue to work with them and walk in the suit.

10k Run = Success!

AB39 Comments

10kWell, I feel completely fortunate and grateful again for the amazing community of friends who turned out to support my recovery this past weekend by running 10km, either in person with us in San Francisco or in different places around the world. I had friends run in France, Canada, all over the US and even a brave friend who ran through the sweaty streets of Yangon, Myanmar despite the funny looks he got from locals.

Here in SF, we had over 100 people attend, many of whom trained hard and completed a personal goal by running these 10km or 6.2 miles. I didn’t go the whole way but I did push myself over 3 miles in the wheelchair (more than I had ever done) and, more importantly, I definitely broke a sweat as I high-fived the runners. The weather was warm and sunny, the Golden Gate Bridge emerged from the fog and there was so much positivity amongst everyone who attended. We had everyone from pregnant moms to young babies to an 87 year old in attendance but no matter what, people brought with them their smiles, energy and good wishes for my recovery. We were all rewarded with a variety of food and drinks afterwards, not to mention ice cream from a small, local producer who generously donated frozen goodness to everyone in attendance.

10k Gathering

Thanks to the help from a couple of my rehab trainers, I was able to stand up in a walker  and show all of my friends some of the progress I had made. I still have a long ways to go, but it felt great to stand up and look at everyone at eye level, without being wobbly or tipping over.

10k - Standing UpThank you to everyone for participating and reminding me that I’m not alone in this fight and that I have the support of all of you to propel me forward in my recovery. Hopefully, the next time we have another event like this, I’ll be on my feet!

Scared of stairs

AB24 Comments

One inch. That’s all it takes to stop me in my tracks, bring my wheelchair to an instant halt, and fling me forward and potentially face plant on the ground. In those first few weeks after my accident, while I was still in the hospital and learning how to maneuver myself in this rolling contraption that I hate so much, going over the smallest bump or gap would send shooting pain through my neck and spine. Just getting in and out of the elevator or the front door of the hospital to get some fresh air was an adventure as I could feel every jolt through my entire body and I would beg whoever was helping me to encounter these tiny bumps or rises as if I were off-roading over huge dirt mounds.

I’ve come a long way since then with my wheelchair as I no longer have much pain, but as I’ve gotten stronger and more able to go to new places, I’ve become more aware of where I walk…I mean….roll. Considering how much I already hate being shorter than everyone around me because I’m always sitting (see a previous post), it’s frustrating to  have to always keep my gaze at the ground and be on guard for any change in surface that will maintain my safety.

As a healthy and active person before my accident, I never thought twice about the entrances to homes, stores or restaurants. I lived on the top floor of an old San Francisco Victorian, with a bunch of stairs and no elevator. Many of my favorite restaurants and bars were situated at the top or bottom of a narrow flight of stairs. In a city where space is scarce and any kind of real estate costs a small fortune, there are few residences that are accommodating to someone in a wheelchair. As a result, to this day I can rarely visit my friends in their apartments or homes. “We’d love to have you over but we’re not sure if the stairs are doable” is something I hear frequently. To my friends’ credit, I have been able to bypass some seemingly sketchy entrances with some creative use of plywood ramps combined with some strong bodies pushing, pulling or even carrying me Cleopatra style.

I constantly fantasize about how monumental it will be for me to just make that first transition out of this wheelchair. Even if I have to use a walker or crutches, having the ability to go up a stair or two will open so many doors for me (literally and figuratively). I’m sick of always worrying about the smallest bump in the sidewalk or an elevated driveway or the unexpected stair and thinking how exactly my wheelchair and body would travel through the air if I were to encounter these foes without the utmost caution.

It is the biggest understatement when I say I can’t wait until I begin to get out of the wheelchair, which I refer to as my savior and worst enemy. I know I need it for now but I like to think that my hatred for it, combined with my love and driving desire to stand and walk, will lead to an imminent change in how I get around, and will lessen the feeling of being scared of stairs.

A much needed change of scenery

AB25 Comments

After months of the same routine, of going to the same places on the same days and feeling trapped in redundancy and “Groundhog Day” syndrome (you’ll have to see the movie if you don’t know what I’m referring to here), I decided to shake things up a bit. I’ve come to Salt Lake City, Utah for two weeks to try a different rehab center and to see what kinds of ideas, practices and exercises I can learn from their experienced team of therapists and SCI professionals.

I have to explain how important this change is for me. For years, I travelled frequently all around the world, mostly for work but also for pleasure and before I could get too bored or accustomed to any one place, I was on a plane to a different destination. Even when I was living in one place and leading a less itinerant lifestyle, I was constantly taking weekend trips to the mountains, camping, hiking and exploring the natural outdoors which I love so dearly. So adding to the long list of physical challenges from my accident is the challenge of routine and boredom from doing the same thing over and over.

Over the last few months, as so many of my friends travelled to different destinations and shared their excitement either directly to me or indirectly through Facebook and social media, I had to quietly hear them and fight the envy and jealousy I felt and battle the frustration of not being able to travel myself. In fact, before my accident, I had booked a trip to Lebanon and I’d tentatively scheduled a hiking trip to Patagonia. All of that went out the window. Now, while Utah isn’t a new place for me (I used to work here quite a bit), it’s the break from routine that I’ve been waiting for and I’ve come to Neuroworx to make the most of my experience.

Neuroworx is a non-profit founded by a man who suffered a bad cervical Spinal Cord Injury himself. He was a practicing doctor, with a family and a successful career and, as I know from my own experience, his entire life turned upside down in one instance. (You can read his story here, very inspirational) Although he had trampolines his entire life and had used them for years, his accident occurred on his trampoline in his own backyard. Being a physician, he knew almost immediately that he had suffered a Spinal Cord Injury and so began his own recovery.

Being told he would never walk again (sound familiar??) he teamed up with an incredible physical therapist who worked with him and helped him recover. Now, while he still deals with many of the challenges of SCI, he is walking and has recovered tremendously. That physical therapist became his partner and she is now the head PT at Neuroworx, coordinating the regimens of the many patients who come through their doors.

I’m excited for this change and will try to post a couple updates from here. Now it’s time to enjoy the mountains and the break from routine.

Don’t sweat the sweat

AB24 Comments

For the first time since my injury, I broke an actual sweat a couple days ago. My arms were moist, my chest, neck and upper back were a little wet and I could actually wipe off some sweat off the top of my head that was slipping out under the acupuncture needles that were buried into my scalp.

Why am I pointing this out you may wonder?

One of the many less noticed but still significant aspects of my Spinal Cord Injury is the effect on body temperature, specifically the lack of ability to sweat. It’s not something that people think about very often, but sweating is extremely important in maintaining body temperature and cooling the body down when it starts to heat up. The nerves that control the ability to sweat are affected by the damage to the spinal cord, particularly in an injury like mine, high up in the spine in the cervical vertebrae.

I first noticed the challenges of not sweating just three months after my accident. On an unseasonably hot day in early October, I was enjoying a rare outdoor lunch, sitting in the sun in a beautiful park when after only a few minutes I started feeling very hot. I touched my head and face to check for perspiration but to my surprise, my skin felt as dry as leather. Not one bead of sweat. I stayed a bit longer only to find that I was unbearably hot.

I have to take a quick break from the story to explain how unusual this was. Before my accident, I LOVED being in the sun. Thanks to my ethnic heritage and my quick tanning skin, I’ve been able to avoid getting sunburned for most of my life. I would lay on the beach in direct sun for hours and hours, I was the guy at the restaurant who didn’t want the table in the shade, and I suffered immensely when I had an office job and had to accept being inside on a bright, beautiful sunny day. So to be overheating after only a few minutes of sunshine was an entirely new experience for me…

I cut the lunch party short and moved to the shade to escape the sun, with the hopes that I would cool down and continue my outdoor picnic. While it definitely felt better in the shade, I found that I just couldn’t bring my body temperature down. I started getting more and more uncomfortable and eventually decided that it was time to go. Sitting in the car as we drove down the hill, I checked myself for any sign of sweat again. Nothing. It only took me a few minutes to realize that I had to do something. We stopped the car and I poured two full liters of water over my head and body, right there in the passenger seat of the car effectively drenching the car seat and dashboard. Ahhhhh relief, finally. Luckily, my body temperature did come down but I learned that the lack of ability to sweat was something I had to be aware of in future situations.

In the months since this incident, I’ve had many intense workouts. I’ve challenged myself physically in novel ways and have pushed my limits on numerous occasions. Yet, despite these exhausting workouts, I’ve only had a few little drops of sweat making a cameo on my body before they disappear again. So to finally have a moment where I actually broke a sweat that lasted more than a few seconds certainly felt like a small triumph. The problem certainly isn’t solved and I’m not sure how soon I’ll get back to being my previous comfortably-sweating-during-physical-activity-yet-not-embarassingly-so self but at least it’s a start. I hope to be drenching many a exercise mat quite soon with my perspired goodness. Yup, that just got said.

FES Bike Riding

AB38 Comments

I LOVE riding bikes. Before my accident, I rode my durable street bike to and from work and all over town since it was my primary source of transportation. Having worked as a bike tour leader for over five years, I also appreciated the joys of recreational bike riding and would spend many weekend days on my speedy little road bike, cycling up and down and over and through so many of the most scenic locations in the Bay Area. One of the things I miss the most about my current physical challenges is the ability to have that freedom of walking out the door, hopping on a bike and zooming around on two wheels all with the strength of my own legs.

So I was pretty excited when I first learned about using an FES bike and its benefits for treating Spinal Cord Injury. FES (Functional Electrical Stimulation) involves placing electrodes on legs, arms, abs, back, glute, or any other muscles that are not functioning 100% and then applying electric pulses to those muscles and “forcing” them to work. It can be used in a lot of ways in rehab but the bike is one of the most common ways for treating lower extremities. The idea is that the electrodes plug into a sophisticated machine (with software that can be programmed specifically to each person’s needs) while the legs and feet are strapped into a stationary bike, and the electrical stimulation being sent to the muscles makes them engage and actually pedal the bike. The whole machine costs close to $18,000 so I only have access to it twice a week when I go to SCI-FIT to work out, but after an hour on the bike, my legs tingle and fatigue and feel worn out (in an amazing way) because those quads and calves and hamstring muscles were actually used.

It’s certainly no replacement for riding outdoors with hills and climbs and descents and curves and sweat and all the other goodness of riding an actual bike, but it’s a great indication that my muscles remember what pedaling feels like and that the muscle memory from all those miles I biked before my accident will help my legs come back to life.

Riding the FES Bike
Riding the FES Bike