Don’t sweat the sweat

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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?

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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.

FES Bike Riding

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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

Sleep to dream to walk

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I’m hiking on a narrow path, slowly ascending and winding as I feel the crunch of the hard yet forgiving dirt beneath my feet with each step that I take. It’s late afternoon and the sun slips in and out of the looming clouds as it starts to set, its rays lingering on the tops of the lush jungle surrounding me. It’s hot and humid and I can feel the sweat collecting on my brow as I push forward and continue to wind up the trail, each step bringing me closer to the summit with an expansive view of the valley below. I’m chatting with friends and enjoying this serene moment when something hits me: I am walking! This isn’t so hard! I look down at my legs to confirm what I’m experiencing and, surely enough, they’re working just fine, striding along and without any difficulty. “Wow, this is so much easier than I expected,” I think to myself as I remember that in most of my everyday exercises, standing and taking a step on the parallel bars takes a lot more effort than this. The lucidity of the moment hits me but the experience continues as we progress up the trail. Finally, we reach the top and I stand confidently as I slowly take in the contrasts of the red dirt under my feet, the deep green of the trees below, the golden rays of the warming sun and the fading but persistent blue of the sky…

Moments later, I’m lying in bed, feeling the heavy weight of my legs as I struggle to lift, bend and move them and change positions. Immediately, I remember where I just was and realize that it all seemed so easy, that I didn’t have to pick up my legs with my arms or feel the constant discomfort of my dangling feet and ankles awkwardly twisted underneath the blankets. I remember the calmness of knowing that standing and walking are as simple as they always were and don’t require the hours of effort that I put into them everyday.

Going back to my childhood, I’ve always had a close relationship with my dreams, wanting to understand the meaning behind each person and each experience in my dreams. In fact, for the last several years, I remember my dreams everyday without fail, both good and bad, which is why I could wake up from a long and seemingly restful night of sleep and feel irritated and tired because of a specific dream I had. My favorite dreams, much like waking life, were the ones in which I was physically active, moving quickly, running, playing soccer, or discovering beautiful sights. The bottom line: my dreams and unconscious brain activity have a profound effect on my conscious emotions.

Now here’s where I think it gets interesting. Since my accident, the content of my dreams really hasn’t changed. Even though I spend the entirety of my day frustrated and struggling with the challenges of being unable to move most of my lower body, in my dreams it’s a different story. Consistently, I have dreams like the one I described and almost every time, I have an “aha” moment where I realize the magnitude of my ability to walk or stand or run or play. Sometimes that moment is even more comprehensive and I think, “wait a second, wasn’t I in a wheelchair? Isn’t it ‘normal’ for me to be rolling around in a stupid chair and if that’s the case, why is it so easy for me to kick this soccer ball or run down that path?” I wish I could say that every night I have these incredible, enlightening dreams where I’m doing all of those things I’ve always loved but even in the more benign, strange, or lackluster dreams, I’m still walking or standing or running.

My explanation is simple: So much of my conscious emotional state is focused (or should I say obsessed) on wanting to recover and get back on my feet that deep down, at an unconscious level, my brain is reminding my body of what it feels like to use my lower body as it was. Or, put another way, my waking life is spent dealing with the difficulty to engage my legs so when I go to sleep, all of that pent up desire is channeled into my dreams and I’m back in my old body, able to walk and stand. One last observation I’ll share is that from much of what I’ve read about dreams and through my studies in psychology, it is said that lucid dreaming (that moment in which you realize you’re in a dream) is often when you wake up. For some reason, it’s unusual and challenging to know that you’re dreaming and stay in that dream. Which makes it all the more perplexing to me that I’m consistently having these lucid moments, realizing halfway through my dream that I’m walking and that this moment is different from “reality”, but that my dream continues and I don’t wake up right away.

I realize I’m indulging quite a bit into the fuzzy world of psychoanalysis and I hope I didn’t lose too many of you to this point, but if you’re still reading, and you have any thoughts or ideas you’d like to share, I’d be happy to read them. We’ll see what tonight’s dreams have in store…

My story on the Huffington Post

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I’m frequently overwhelmed with the amount of information that we have access to these days. Countless websites, social media sources, plus 1s, “likes”, reviews, surveys, posts, tweets, tags, and beyond. But there are moments, like now, when I feel so lucky to live in a time with so much connectivity and communication with others around the world. I was recently contacted by another blogger Arthur (link to his blog) who has written a book and deals with his own recovery and medical challenges. After a few back and forth emails sharing our respective stories, he mentioned the chance of getting our frustrations with the US medical system out to mass media. Thanks to his contact at the Huffington Post, they wrote an article about the shortcomings of healthcare and sited my story and his in the article.

http://www.huffingtonpost.com/gregory-g-allen/its-time-congress-stands-_b_2563497.html

I am just one of thousands – if not millions – of Americans who feel abandoned and shortchanged by the inadequacies of profit based insurance companies that run healthcare in the US. I would be honored if you can read the article and share with your respective communities. Thank you in advance, and to Arthur in particular.

Sharing the story of an inspiring friend

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I want to take a moment and give a shout out to a recent friend and his outstanding achievements after suffering a Spinal Cord Injury of his own. I was introduced to Grant Korgan just weeks after my accident while I was still in rehab at the hospital and I remember talking to him and instantly feeling better knowing that someone else out there could possibly understand what I was going through. “You have a new best friend bro, feel free to call me anytime you want” is what he told me. Grant suffered his accident almost three years ago and was given the same uninspiring prognoses from his doctors about his chances of recovery.

Despite the challenges he faced, he worked his way out of his wheelchair, became much stronger, started walking with canes, and became the first adaptive athlete to hand-ski to the South Pole in Antarctica. This effort was chronicled by a documentary film crew and Grant has also written an inspiring book about the first year of his life after his accident entitled, “Two Feet Back.” I read his book and highly recommend it to anyone interested in learning of a person who has approached his recovery with unwavering optimism and positivity.

I want to dedicate this post to sharing Grant’s talk at a recent TEDx event. Check out his video and if you only have a few minutes, feel free to skip to 16:08 and watch and listen to the song about his story and recovery. I am continuously inspired by him and discover so many similarities to my own recovery. Madluv to you Grant

TEDx Grant Korgan: The Goosebumps of Life

“As independent as possible…”

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If there is one phrase I’ve heard entirely too often during my recovery it’s, “We have to get you to be as independent as possible.” This may not sound so bad at first. Why wouldn’t I want to be independent? Is there something wrong with taking a situation in which almost everything I do involves help from someone else and empowering me to do things more independently?

Now I have to provide some context so you don’t think I’m just being hyper sensitive or overly scrutinizing of a seemingly simple statement. The entire seven weeks I was in the hospital I would hear nurses, doctors and therapists say this to me, usually as a way to motivate me – as if I needed extra motivation – to learn a particular skill or maneuver. Just days after suffering the most horrendous injury that debilitated me to an unthinkable extent, I was being told and retold that my “independence” (can you sense my sarcasm??) was hinged on the need to move my body a certain way or learn a seemingly impossible task. For example, before I could achieve any basic efficiency with my hands (unable to hold a pen or cup) I was being told, almost threatened, that I should try really really hard to do a particular thing because I had to be “as independent as possible”.

On my first day of rehab, just ten days after my injury, I was asked if I had thought about what my goals were for rehabilitation. I simply responded, “I want to walk.” Once I saw the quizzical expression on the practitioner’s face, I followed up with, “Look I understand this is going to be a long road but I can’t think of anything else that would motivate me so tell me what I need to do to get me closer to my goal of walking.” More confusion on his face. It was as if I was speaking Mongolian or stating that I wanted to flap my arms, spin around three times and fly to Saturn. I think they expected me to say that my goals were something like wanting to sit up without falling over or feeding myself or rolling over in bed or strengthening my arms enough to lift my body from wheelchair to bed. The truth is I badly wanted to do all of those things! But here’s where it gets tricky, and where I start to get frustrated with the way Spinal Cord Injury (SCI) is treated in our medical system.

I learned that until 10-15 years ago, someone who suffered a SCI would stay in rehab for months at a time. But now, insurance companies recognize the exorbitant cost of keeping someone in the hospital that long, not to mention the hours of physical and occupational therapy involved, and the model has changed dramatically. Most patients in this well-known rehab facility I was in (treating SCI, stroke, brain injury, and other serious neurological injuries) averaged 2-3 weeks in rehab. I was one of the “luckier” patients because I stayed for five weeks. In fact, my discharge date from rehab was determined just three days after I arrived! Let me recap: just days removed from seven hours of spinal surgery, after arriving in an ambulance with towels and tape strapping my head down and protecting my badly damaged neck, unable to move most of my body or perform everyday functions, the medical insurance system had the magical ability to set a date to get me out of the hospital. Now it all makes sense…

Becoming “as independent as possible” had little to do with my goals or long-term recovery. Rehab was meant to be a boot camp of sorts for me to obtain the minimal strength and capabilities to go home and not be a swaying, falling, broken, soaking wet mess of humanity. In a country abundant with bogus lawsuits and fervent medical malpractice scandals, the priority of my medical insurance wasn’t to heal my body to its greatest capacity – they had experienced, knowledgable therapists and state of the art equipment after all – it was to protect their legal liability and preventing me from saying that they didn’t teach me how to move from my wheelchair or wipe my own ass.

Moreover, rehab isn’t about rehabilitating the body to what is realistic or what one may desire. It is about functionality. Everything they taught me was with the purpose of how I could function when I wasn’t within the safe, happy walls of the hospital. Every time I brought up the idea of a full recovery, I was given the same quizzical look I saw that first day of rehab. Each time I mentioned that I was going to walk, I was politely dismissed and told to focus on my task at hand. Since I left the hospital, I have been given a grand total of ONE hour a week of physical therapy. Oh wait, actually it’s technically 45 minutes but sometimes she does me the favor of staying with me for an entire 59.824 minutes before scurrying off. And each time I see her the focus continues to be on function – not rehabilitation – and I’m continuously told to learn to be (you guessed it) “as independent as possible…”

A six-month reflection

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It has now been exactly six months since I suffered my Spinal Cord Injury. Six months in which everything I knew and did in my life dramatically changed, six months in which an outstanding community from near and far came to support me consistently and with arms wide open. I’m not sure exactly how I feel about this moment.

On the one hand it feels like an absolute eternity that I’ve had to live with a severe disability, unable to walk, unable to work, unable to do all the activities that contributed greatly to my mental and physical well-being, and battling everyday with the uncertainties of my injury. No one tells me if and when I will recover or how much. Doctors, physical therapists and medical practitioners seem so obsessed with liability, lawsuits and the fear of giving me false hope that they barely show excitement at my accomplishments. Of course for me, any major development (i.e. a wiggling toe) is a tiny step closer to my ultimate goal of full recovery, but all I hear from the medical establishment is to accept the current situation and “become as independent as possible”. They don’t push me to challenge my limits or boundaries, they don’t encourage me to take part in other therapies and treatments, they don’t encourage me to keep hope alive; I’ve done all this through my own will and volition. It definitely feels like I’m a lone fish swimming upstream against a relentless current that says to accept things the way they are.

On the other hand, in some ways it does feel like time has passed rather quickly. I’ve found a rhythm and schedule that work for me. No less than six days a week, I’m driving to different parts of the Bay Area to access the therapies and treatments that have contributed so much to my improvement thus far, and filled in the enormous hole that my medical insurance (and their approach) has left for me. I’m shocked by how quickly summer changed to fall and now to winter and the new year. I’m astonished that I’ve already been through so many mornings having woken up and been angry at not being able to jump out of bed and onto my feet. Or how many evenings I’ve endured with a sore butt from sitting in a chair all day.

I have purposely set my goals high, because I know that compromising how I set my goals compromises my potential accomplishments. So I will stick with my goal from the beginning, that on my birthday this August (over 13 months after my accident), I will be on my feet and walking. Everyday can and does often feel like a struggle, but if I’ve made it six months already and improved so much, I can only hope to exceed my expectations for the next six months.

Wiggle wiggle pinky toe!

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I’m laying in bed, slowly waking up and adjusting my eyes to the winter sunshine as I glance out the window, when I decide to do some visualization exercises with my legs and feet. I go through the usual exercises that I’ve been doing as frequently as possible in my free time: flex my feet, bend my knee, rotate my legs in and out. Since my accident, I don’t get any movement in my lower body when I do these exercises but I’ve stubbornly and consistently kept at it. The reason why everyone – from the nurses in the ICU to my spine surgeon to my acupuncturists – has emphasized the importance of visualization is the belief that there is enormous value in sending a signal from the brain to the lower body and by thinking and trying to move those limbs, one can repair the neural pathways and reestablish that damaged connection.

This time though, something feels different. I lift myself up to sitting with my legs straight ahead of me on the bed and I throw off the covers to get a better view. Something just feels different, like there’s movement and it’s not just a spasm or reflex (which I have frequently as well). I stare at my right foot and see that my pinky toe is slowly moving in and out. To make sure this isn’t a fluke, I stop and do nothing. Pinky toe doesn’t move. I try again and there it goes, immediately responding to the signal I’m sending. This can’t be right, it’s been months and months of having my legs and feet dangle lifelessly as I’ve dragged and lifted and bumped and dropped them from place to place in this strange new world of life post-Spinal Cord Injury.

I do it again, this time to confirm that what I thought I had been seeing could actually be real. “Wiggle little toe, wiggle”. Wiggle wiggle it says, as it dances back and forth, proving to me that for the first time in almost six months, I have regained motor control of a part of my lower body.

What a development for the new year, what a way to show me that 2013 really will be a special year, one in which I hope to achieve all of my recovery objectives and kick this damn injury’s ass! It’s only one pinky toe, on only one foot and it’s still a long ways to go I’m sure before I can move my legs around like I used to, but that pinky toe gave me so much hope for the future of my recovery. To go from feeling that moving any part of my lower body is the equivalent of moving a table with my mind, to then finally seeing a flicker of hope in a tiny little pinky toe is an indescribable moment. Now, I can move this toe 10,000 times if I have to until it leads to me being able to control my other toes and then my foot and then my ankle and then my legs… My fire of recovery has been fueled, my conviction has been confirmed and my dream to reach my ultimate goal has entered into the realm of reality.

Want proof? Here it is:

IMG_4589_2

To a new year of new recovery

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2012 was a bad year for me. While the first half of the year included a new job, a fantastic trip to Colombia, planning a move to a new and exciting house in SF, and some amazing hiking and camping trips with friends, everything came to a screeching halt on that fateful night in July when I suffered my Spinal Cord Injury. Paralysis is not a word I use very much to describe my condition because I hate the defeatist connotation of it, but I have to be honest about my situation after that accident: I was paralyzed, in more ways than one.

While my body was paralyzed from the chest down, so many other things had been paralyzed as well. I had been in peak physical condition before this accident and as a result of years of taking care of my body and consistently pushing myself athletically, I was in better shape as a 30-year-old than I was as a Division 1 college athlete, and sadly all of that was out the window. My new job at a renewable energy startup, and a potential springboard to a career in the field was suddenly stripped away from me. My summer plans of moving and setting up a new house, weekend camping trips in the mountains, and a vacation to Lebanon vanished right before my eyes. Everything that I knew, almost everything that made me who I am was turned on its head.

And now, almost six months after this horrendous incident, a new year is here. 2013 is the year that I walk. It’s a pretty significant task so it’s hard to call it a resolution, but the challenge of it means I will dedicate myself to it more than any resolution in the past. I will do all I can and work harder than I’ve worked to bring this to fruition. I’ve learned in the past few months about the incredible support of my community and I ask for your continued support in this next year, a year in which I plan to see all of you while standing on my own two feet. Happy new year to all.