Drip drip drip

On a recent warm and sunny Indian Summer day, I was sitting outside when I noticed a dripping on my shoulder. There was no way it was coming from the cloudless sky above so it quickly became apparent that the sweat was dripping off my head, naturally moisturizing my neck and shoulder.

Early on after my injury, I wrote a post about the very first beads of sweat I experienced and how significant that had been so with this recent development, I figure it’s time to reexamine this vastly under appreciated bodily system.

One of the many, and I mean MANY, secondary complications of a Spinal Cord Injury (SCI) is the deficiency in body temperature regulation. Simply put, the nerves in the spinal cord that control perspiration to various parts of the body are damaged thus leading to a decrease or inability to perspire. Similarly, when a person with a SCI gets too cold, it may be very time consuming and challenging for them to warm back up. The comfortable range of temperature for someone with a SCI is a lot more limited than it used to be. As you could imagine, this can lead to many challenging situations and unanticipated planning.

In the 18 months since I wrote that last post, my ability to handle more extreme weather has dramatically improved. I remember my feet used to turn to ice blocks at night, even in warm settings, because of the lack of circulation. Sitting in the sun for more than a few minutes was just asking for hours of suffering, as my bone dry skin wouldn’t naturally cool down the rest of my body.

I can’t say that I’m anywhere near where I’d like to be but the sweating and the temperature regulation as a whole has improved dramatically. Strangely enough (or not so strange if you know a bit about the left-right imbalance that comes with SCI, stroke, and other neurological injuries), I sweat much more out of the right side of my body than my left. I no longer have to rely on a physically intense workout to get a decent sweat. If the weather is warm enough, the moisture will come out.

I have to credit swimming as one of the contributing factors to this. Getting in a pool a couple times a week and literally forcing my body to deal with a dramatic change in external temperature, only to transition again after getting out and showering, has made me more adept at regulating my body temperature. I haven’t yet been anywhere too cold so I don’t know if I feel as confident with that, but I’m sure I’ll discover that soon.

So the next time you sweat, don’t take it for granted. That extra layer of perspiration and body odor is what’s keeping your body functioning at its peak.

SCI Survey: Results and Summary

A couple of months ago, I wrote about my interest in finding out of the situation of other people who have suffered a Spinal Cord Injury and learning about their respective challenges as compared to mine by creating the SCI Survivors Survey. Thanks to a tremendous commitment of time and dedication by two friends (Laura and David, I’m so grateful for your help!), we were able to obtain incredible results from people’s experiences.

We’ve written a summary of the results and I wanted to share it here to continue the conversation and to highlight this too often underrepresented injury to those who may not know much about SCI. Thank you to everyone who openly and honestly responded to the survey and provided such an incredible wealth of information. And many thanks to everyone who helped in the process. I hope this can lead to some significant changes in how we deal with SCI.

SCI Survey Summary 

 As her fellow athletes recover from realizing their Olympic dreams, skier Maria Komissarova has just begun the hardest challenge of her life. The 23-year-old crashed during a practice run in Sochi[1], suffering a fractured spine that has paralyzed her from the waist down.

Komissarova now faces hardships unlike any she has ever faced. When the shock subsides, she will have to learn how to live day-to-day in her new condition while navigating a complex set of medical options. Her coach will be replaced by a spine specialist, her trainer by a physical therapist, her fame by a long and painful recovery that will be every bit as grueling as her Olympic training. State sports bodies and the Russian federation paid for her initial treatment but the federation says that the skier’s recovery may take a long time and extra money will be needed.

If an Olympic athlete needs to raise extra money for her recovery, what happens to people with a lesser public profile, who suffer similar devastating and life-altering Spinal Cord Injuries (SCIs)?

While Komissarova’s story has received press attention around the world, countless other SCI survivors (500,000 global cases a year[2]) struggle in anonymity to find answers to the physical, emotional, and financial struggles that now dominate their lives. Even though 12,000 people suffer SCIs each year in the United States alone[3], all too often, little is known about their plight.

Arash Bayatmakou wants answers. In 2012, the then 30-year-old San Francisco resident endured a horrific fall from a third floor balcony that shattered two cervical vertebrae and paralyzed him from the chest down. Despite being told by medical experts that significant recovery was unlikely and that he should accept his condition and adapt to life in a wheelchair, Arash remained determined to walk again and decided to make recovery, in his words, his “full-time job.”

The results have come slowly but steadily—improved hand and arm strength and dexterity, core strength, even a wiggling toe. Recently, Arash stood on his own for the first time since the accident. After proving the “impossible” to be possible several times on his road to recovery, Arash wants good information both for him and other SCI survivors.

How similar is his predicament to that of other SCI survivors? How many SCI survivors have been given little or no hope of recovery? How many are forced to pay out of pocket for necessities as fundamental as a wheelchair due to poor insurance? What are their experiences and how do they deal with this life-altering condition?

To find out, Arash, David Nihill and Laura Bekes put together the SCI Survivors Survey and the results show that his case is by no means the exception. While the severity of each injury is unique based on the extent of damage to the spinal cord (which controls all neural communication from the brain to the rest of the body), the potential effects are devastating as paralysis of the upper and/or lower body is almost always a result of the injury. In addition, some of the lesser-known, yet hugely significant, effects of SCI include impaired circulation and blood flow, loss of bladder and bowel function, changes in blood pressure, body temperature regulation, depression and a variety of other physical and psychological challenges.

With an injury as debilitating as this, the impacts are severe and detrimental to many aspects of the survivors’ lives, and many struggle to identify and access the resources they need to give themselves a chance at recovery.

There were 61 responses to the survey nationwide, with respondents of all ages (18-69 years old) and with injuries suffered as long ago as the 1970’s to as recently as 2013. Respondents were asked questions about their injuries, interactions with doctors and medical professionals, prognoses, attitudes and approaches to their recovery, experiences in and out of the hospital and rehabilitation centers, continuing therapy, financial impacts of the injury, and their current state.

To summarize the survey findings as briefly as possible: 1) It is very difficult to predict outcomes for people who have suffered an SCI; 2) Few people with SCIs feel they are receiving sufficient coverage from their health insurance for modern day therapy that could potentially improve their condition and help realize their recovery potential and; 3) Despite facing such difficult odds, the will to recover has led many people to challenge the expectations of their doctors and prove their prognoses wrong.

To begin with, almost everyone (83%) was given a prognosis of some sort, from an inconsistent variety of people including neurosurgeons, rehab doctors, nurses and physical therapists. The prognoses were given very shortly after their injury and/or surgery and the overwhelming majority (83%) were told that the possibility of walking was unlikely or impossible. This left few people hopeful for their chances of regaining function or improving their condition.

While the challenges that come with this injury are many (physical, emotional, financial, professional, etc.), one of the clearer findings from the survey was that many people reported doing better than what the original prognosis suggested would be achievable or possible. The degree of improvement ranged dramatically from some respondents claiming smaller yet significant physical changes (i.e. better upper body function, improved circulation, more stamina) to others who had major gains in lifestyle (i.e. increased independence, driving a car, maintaining a professional career, improved family and personal lives) to even those who had regained the ability to walk.

Struggles with insurance and the ensuing financial impacts were a common finding for many respondents. Specifically, despite facing an injury that leaves people unable to walk and paralyzed from chest or waist down, 18% did not have any of the cost for their wheelchair covered by their insurance. Upon leaving the hospital, 87% needed to make costly alterations to their home, 83% did not have help from insurance to cover additional at home costs/supplies (median of $3,600/year) incurred by the injury, and 44% had to turn to fundraising to help with expenses.

“They haven’t done anything more than the BARE minimum, they didn’t even pay for the wheelchair that they wanted me to spend the rest of my life in. They’re horrible, irresponsible, inconsiderate and inefficient. They should know that caring for me now and getting me better now would save them money in the long run but their approach to SCI is so antiquated and backwards.”

“I don’t think insurance companies understand the benefits… The true benefits… Of ongoing physical therapies for spinal cord injury survivors.”

“At the end of my stay (in hospital) I began to recover function of my legs. The rehab hospital requested more time from my insurance but was denied.”

The attitudes and approaches of doctors and medical professionals were often reported to be defeating and demoralizing. In fact, 67% of respondents said that their initial interactions with doctors did not leave them feeling hopeful for their chances of any kind of recovery. 63% of respondents were told to focus more on adapting to their injury than recovering from it.

“I told them I wanted to walk again and recover and they mostly laughed at me, dodged my question, didn’t give me answers and tried to just get me to focus on adaptation.”

“My prognosis doesn’t mean anything to me now as I know how flawed it was when they told me.”

 “I have recovered more than I ever thought. I can walk independently with [braces] and a walker. I was told I did not have enough function to ever do so.”

“Not going to ever walk again was my diagnosis, I am now walking.”

Despite the overwhelming physical challenges, the often less than optimistic prognoses, and the inconsistent attitudes and approaches encountered with medical professionals, the survey found that many respondents refused to give up hope for their chances for regaining function. 80% took part in some kind of ongoing rehab or therapy beyond initial inpatient rehab even though 74% did not have this therapy paid for by their insurance. 100% found this therapy to be beneficial (in a number of ways) including 51% who said that this therapy had reduced or eliminated their need for medication and 57% who reported that ongoing rehab or therapy had helped improve secondary conditions that come with SCI (e.g. blood pressure, bowel/bladder function, and Autonomic Dysreflexia).

“I needed much more therapy for many hours at a time. It wasn’t even close to giving me what I needed. I feel like my insurance pretty much gave up on me.”

“I have gone from wheelchair with no movement against gravity to standing, to walking with a walker (5 months), to forearm crutches (8 months), to unassisted (18 months). My rehab has helped me get stronger and push my life on my feet which has lead to more improvement.”

The survey confirmed a significant finding from previous research conducted by the National Spinal Cord Injury Association[4] in which a majority of respondents were told to exercise by their physicians but did not have access to a trained therapist and did not receive specific instructions regarding the kind of exercise to engage in or how often.

Overall, the SCI Survivors Survey provides some valuable information about what people go through following this life-changing injury, but it also raises a number of questions that are especially relevant now, with so much of the national conversation centered on healthcare.

Why is treatment of SCI not utilizing newer, more progressive treatment options more often? Even though the number of people who regain the ability to walk is small yet significant, why do medical professionals consistently frame the prognosis in a negative way and choose to tell people that they won’t get back on their feet? Why don’t they admit that they simply can’t predict outcomes and encourage people to work hard to try to reach their potential? Why are insurance companies not stepping up to the plate in providing better therapy options that can minimize secondary complications and prevent future hospital visits, and the exorbitant costs associated with them? Why does insurance appear to pay for continuing medication but all too often refuses to pay for more exercise or therapy that can reduce or eliminate the need for medication? How are people meant to deal with the financial impact of the injury if something as fundamental and necessary as a wheelchair is often not paid for by insurance?

The survey results suggest that the entire system of treating SCI is insufficient for helping SCI survivors maximize their chances for recovery, and in need of significant change. Because of the many complications and health needs that arise from a Spinal Cord Injury, SCI survivors develop a number of continuing medical needs from their respective healthcare providers. In a time where healthcare is a primary issue for many people, it’s important to think about how to help people who suffer this injury to live healthy and productive lives, with access to a healthcare system that is balanced in providing necessary and effective services while maintaining an efficient and financially sound system.

Arash, like so many other SCI survivors refuses to give up hope, drawing inspiration from the many people who have recovered to levels greater than anticipated. Like a number of respondents in the survey, he has to rely on sources and support outside of what his insurance has provided him in order to maintain his aggressive therapy schedule and to achieve his ultimate goal, to get back on his feet.

On March 20th, Comedy for a Spinal Cause will be hosting a standup comedy show in San Francisco showcasing local comedians with all proceeds benefitting Arash and his recovery. Find out more and purchase tickets here.


[3] U.S. Centers for Disease Control and Prevention

http://www.cdc.gov/traumaticbraininjury/scifacts.html

Olympic Observations

Seven one-hundredths of a second. That’s what separated the gold and silver medal finishers in the Women’s Giant Slalom downhill skiing event in the Sochi Olympics last week. As I was watching, I was struck by the tiny margins of difference that would determine the order of finishers in this event.  To put it another way, the top 9 finishers in the event completed the course within 1.77 seconds of each other! So less than 2 seconds decided the best in the world from the mediocre skiers.

This got me thinking of the athletes and what they do in the three years and 50ish weeks when they’re not in the olympics. Obviously, there’s a tremendous amount of training involved. For some of the more popular sports, the athletes may have the luxury of training nearly full-time while for some of the other olympic sports (i.e. curling, luge), I learned that most of the athletes have full-time jobs and careers and train for their sport on the side. Either way, the amount of hours and time that each of these people puts into practice and training is admirable and remarkable.

So going back to the ski race, I couldn’t help but feel astounded that for these skiers, who are the absolute best in the world, four years of intense and daily training and thousands upon thousands of repetitions of the same movements all lead to a day where their fates are decided in mere milliseconds.

This got me thinking about my own regimen and my own olympics (of sorts) that I’m training for. Despite my lifelong athleticism and passion for an active lifestyle, I know that before my accident, it was hard for me to fathom the life of an olympic athlete, spending THAT many hours of everyday training for an event in which you may not even be selected to compete. How could you justify waking up early, staying up late, sacrificing sleep and time for other aspects of life to train for an activity while knowing that you MAY have a chance to possibly go up against the best in the world and then and only then, maybe you will be seven one-hundredths of a second fast enough to win gold??!

Since the day I got out of surgery to repair my badly broken neck, since the day when I knew that my body was damaged yet my spirit was more resilient than ever, and since I knew that the road back to my feet would be a long and arduous one, I decided that I would do everything in my power and spend as many hours a day and as many days as necessary working towards my goal.

In this regard, I share something with those olympic athletes. Our commitments to our respective goals are unquestionably similar – I would even argue that I want to walk more than any athlete wants to win gold but I guess that’s gonna be hard to prove.

And so I understand now why someone would train so much for so long despite such slim chances of reaching their goals and winning the race, and being better than everyone else out there. If you want it badly enough, then no amount of practice or training or repetitions will be too daunting to prevent you from getting there, just seven one-hundredths of a second fast enough.

100% Active mental effort

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.

Traveling with SCI

This past week I did something that I hadn’t yet done since my accident. I got on a plane and traveled to a destination, wheelchair and all. I had legitimate fears and questions with the process of air travel: How long would it take to get through security? How would I get on the plane? Where would the wheelchair go? How sore and tired would I feel after hours of sitting in one place?

Having traveled for work and pleasure for a number of years and having logged hundreds of thousands of miles flying, I was well aware of the physical challenges that come with air travel, albeit for a healthy person. I remembered how good it felt to get up in the middle of a long flight and stretch my legs (not to mention do stretching and pseudo-yoga poses in the aisle amidst the strange looks and glances of the other passengers). I knew that sitting for that long didn’t bother me so much because I would often be out for a run within only a few hours of landing. How would all of this work now?

My trip was a modest but still significant 3 1/2 hour flight from San Francisco to Minneapolis to visit my girlfriend’s family, something she insisted had to happen in the warm summer months so as to avoid the harsh Minnesota climate of the other nine months of the year. It was either now or next summer, and I didn’t want to wait that long. So off we went…

In a nutshell, most things weren’t as bad as I expected. The check in, security, and pretty much everything at the airport were smooth. Boarding the plane was hilarious as I had to transfer from my wheelchair to a tiny wheelchair that could easily fit down the narrow aisle. Never mind that even my skinny ass barely fit on the seat as they strapped my arms and legs like I was in a straight jacket and tumbled me down the aisle of the empty plane before everyone else boarded.

The one thing that was as painful and frustrating as I expected was sitting in that airplane seat for the whole time without being able to move my legs around or stand up. Thankfully I was able to sit on my cushion from my wheelchair which eased the pain a bit (and raised me up in my seat so I looked like I was about seven feet tall) but at the end of the day, sitting still for so long and feeling my blood circulation struggle and my feet and ankles swell wasn’t ideal.

All in all, I’m happy I overcame this minor obstacle of air travel, especially since I had such a great reason to make this trip. I was grateful to have my girlfriend there to help me through this process and we had a great weekend together. I can’t say I’m ready for a longer flight anytime soon, but I’m looking forward to the next travel adventure.

Stone Arch Bridge - Minneapolis

Repetitions and rewards

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…

Scared of stairs

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.

Another dose of perspective: handling my hands

Hand diagramWe all take our hands for granted. There. I said it, and I really mean it.

I have written about a lot of my different physical and mental challenges here, but I have yet to dedicate an entire post (or more) to one of the most devastating aspects of my Spinal Cord Injury: my hands. Take a moment and just think of the small, fine movements you use your hands for throughout the day. Examples:

Unscrewing a cap of toothpaste; splashing water on your face, squeezing shampoo into your hands, buttoning your shirt, zipping a jacket, tying your shoelaces, fastening your belt,  unscrewing a jar, peeling open that annoying thin aluminum wrapper that always rips on a small container of yogurt, pouring milk into your coffee, eating with utensils in both hands, grabbing your keys, locking the door, turning on the ignition in your car, pulling a credit card out of your wallet, handling cash, signing a receipt, and on and on and on… 

Every single one of the functions and movements I described above are significantly impaired for me because of weakness in my hands and fingers. Some of the things I listed are still nearly impossible for me (squeezing shampoo), a few have become easier and more routine (signing a receipt, unscrewing toothpaste), and some I can do decently, just more slowly and weakly than normal (tying my shoelaces, buttoning my shirt).

I have become entirely accustomed to not trusting my hands. I am constantly dropping things on the ground. I still can’t hold my laptop or a heavy book with one hand. I am patiently waiting for the day that I can hold a plate of food comfortably without feeling like I’m lifting a 100 pound dumbbell. Opening packaging or a wrapper on everything from a pack of gum to an envelope is still a massive challenge and I’m stuck asking for someone’s help much more frequently than I would ideally like. I have to sleep with a bulky splint on my hand to help my fingers extend and open and feel more limber the next day.

Now I’ve only discussed basic yet necessary tasks and movements for everyday function without even mentioning maybe the most disturbing and frustrating aspect of my injury and its effect on my hands. Put aside for a moment the obvious challenges of someone outdoorsy and active like me who cannot walk or run or hike or do any of the active things I love to do. Let’s accept how excruciating it is for me to be cooped up inside on a nice day when I’d normally be riding my bike or playing soccer in the park. The two “indoor” activities that I enjoy the most, activities that are just as important in defining who I am and what I love to with my time – playing guitar and cooking – have been taken away from me. When I tell people that this is the most humiliating and debilitating injury I can think of because of the number of ways it affects me, THIS is what I mean. Cooking a big dinner for friends or having a lively jam session were fundamental elements of my personality, and now I can’t even do these. This is why it feels like almost my entire identity has been crushed by my Spinal Cord Injury.

I have zero intention of turning my blog into a whinefest to complain to the world about my problems, so I’ll express the entire motivation and reason I’m writing this rant: I am extraordinarily lucky to have the function I have. Even I, in this state of constant frustration and recovery, feel incredibly fortunate for the strength and abilities I DO have in my hands.

Breaking my C5 and C6 vertebrae in my neck would typically mean that I have limited range of movement in my shoulders, weak biceps, floppy wrists with almost no strength to bend or extend them, little to no function in my fingers and hands, and significantly weakened triceps. Nerves to handsMost of the other people I’ve met with my injury have had a much bigger struggle with their hand function. It’s one of the first things other SCI patients quickly recognize when they see me. “Dude, you’re a C5?? Your hands look pretty good…” No one knows exactly why my hands were spared some of the damage and it just continues to prove how mysterious and misunderstood this injury is.

Now if this isn’t amazing perspective, I don’t know what is. Every time I want to complain about not being able to strum my guitar, write music or chop onions as quickly and ably as I used to, I think of how much worse it could be and how lucky I am to at least have the function that I do have in my hands. I admit, I work extremely hard on my hands, at least 2-3 hours a day doing various stretches and exercises (like typing) that have helped me tremendously. To finish on a positive note, I want to recognize a few of the small accomplishments with my hands in the last few months: I can type at almost the same speed I used to, flossing is effortless, I can hold my chef knife and chop much better than before, and I’m trying to fulfill my musical desire by learning the piano. Here’s to continued improvement with my hands, to us all recognizing how amazing our hands are and not to take them for granted.

Don’t sweat the sweat

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.

Spurts and plateaus or a slow and steady climb?

How do you measure progress? How do you know how much better something is than it was one day before? There are many things that can be measured and captured quantitatively but when it comes to matters of health or the body, how do you know if you improved more this month or two months ago?

I’m constantly being asked:  “How are you doing? You noticing any improvements? What’s new with the recovery Arash?” These reasonable and seemingly straightforward questions can be nearly impossible for me to answer. On a basic level, I would assume I’m doing better that day than the previous day, but on a deeper level it’s sometimes really difficult to understand if and how much I’m improving. This is one of the most frustrating elements of dealing with such a devastating injury that has damaged me in so many ways.

One of the earliest posts I wrote on this blog was about being on A Crowded Battlefield and how overwhelming it can feel to deal with so many parts of my body being damaged and the challenges of focusing on one thing and being presented with another challenge. In the same way, when I get asked those questions, I have to do a quick analysis of about 37 different body parts and functions and assess if and how much each of those has improved and if that’s more of an improvement than the last time I checked (probably just a few hours before).

In my head, it may go something like this: “How am I doing? Well, let’s start with the obvious: still can’t move my legs. My feet dangle as limp as they have since I began the hospital adventure seven months ago. I still can’t use a fork and knife because I don’t have enough strength in my core to sit up and use both of my hands freely. Speaking of hands, funny you should ask… yes I can type and hold a glass of water and push myself around in my wheelchair (have I mentioned how much I hate my wheelchair??!!) but I can barely squeeze the shampoo out of the bottle and forget about unscrewing an unopened jar or holding anything heavier than a book in my hand. Ahh but the toe, yes alas I can still wiggle my pinky toe. But wait wasn’t that a while ago that I started to wiggle my toe and thought that it was going to snowball into other major improvements, and oh yeah, that hasn’t happened quite yet…” It goes on and on but you get the picture.

All of this brings me back to my original motivation behind this post, how do I measure progress in this post-injury/still unfamiliar body of mine? Maybe the hardest question for me to answer is whether my recovery goes in spurts and plateaus or if it’s a painfully slow and incremental process. There are moments (like today and a majority of the last couple weeks) where I do feel like I’ve undoubtedly plateaued. Some of the exercises I did today don’t feel much stronger than they did last week, or even last month. My hands are so incredibly slow to improve and there’s little I can do to expedite their growth. Standing and walking on my own seem as far away as they ever have been.

But just when it seems like I’m unimaginably stuck on this plateau, I think about one thing: my body is constantly changing. Whether I feel stronger today than I did yesterday is hard to determine but I might feel ever so slightly different than I did previously. And maybe that’s the answer, maybe improvement isn’t always obvious or clear to me, but maybe I have to accept that change is the substitute for progress. After all, if my body was actually stuck and didn’t want to get any better, why would there be so many changes, so many tingles and burns and spasms and unfamiliar sensations and sore muscles? In that case, then maybe my recovery is more of an incremental climb, a barely upward sloped line glacially moving towards the top and signifying a very slow but consistent progressive process. I suppose I still can’t make up my mind on how to measure or explain my progress so just bear with me if I stumble or mumble a bit the next time you ask me how I’m doing.