Five Years On…

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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.

Finally finding exhaustion

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I want to be exhausted. I want to push myself beyond what I thought was imaginable and then push more. I want that feeling of satisfaction that comes with knowing that I have absolutely nothing left in the tank. And, until recently, I hadn’t found this feeling for years.

I’ve mentioned fatigue quite a bit throughout my posts and it’s always something I struggle to describe clearly. The conversations are often like this:

Them: “How long do you do that exercise before you get tired?”

Me: “It’s hard to say. There are so many factors that go into how I’m doing on a particular day that it’s not always easy to know why my body reacts in certain ways. Some days, I’ll be really tight and it will be hard to move because of that. Other days I just might not connect to the muscles that I want.”

Them: “So you’re just tired from the beginning? Or from something you did the day before?”

Me: “Um… kinda… but not really. It’s not tired, it’s just that I may not have the ability to get the neurological connection to make the movement.”

Them: “You mean like you’re sore?  Your muscles just don’t respond?”

Me: “Yeah sorta like the responding. It’s not soreness. I haven’t felt sore at all in years. At least not in my legs. I’m always sore in my shoulders, neck and arms, like, all the time. But with my legs it’s just… I don’t know… it’s hard to describe.”

And that’s usually where I give up.

In my last post, I talked about neurological fatigue, that unique sensation that best describes that sensation of not being able to connect to a movement or to specific muscles in my lower body. Recently, on my most recent trip to visit Alejandra and applying the lessons of her one-0f-a-kind Neurokinetic Pilates method, I finally found exhaustion. And not the esoteric neurological kind that I have a hard time describing. Just good ol’ fashioned “I want to collapse and lay down and not move” exhaustion. And it felt amazing.

I’ve written extensively about how Alejandra is always able to find and make new connections within my body, and this time was no exception. On the first day I see her, she always asks me what my objective is for the time I’m with her. This time, I repeated the same exact thing I told her last year: that I want to get the connection for hip flexion, that is, to pick up one foot and take a step already…

Unlike last year when she told me that she didn’t think I was ready for that yet and I needed to work on a bunch of other movements in order to get myself strong enough to even be able to attempt hip flexion, this trip was a different story. Alejandra agreed that it was the right time that I try to start tackling this immense challenge for me: going against gravity to lift a foot off the ground step it in front of the other. Sounds simple, but not for me.

Alejandra did what she always does, she took the exercises I was doing (which I shared with videos in my last post), and pushed me much further beyond my comfort zone. The result was that for the first time in years, I was actually 100% physically and mentally tired and exhausted after each day of working with her. She was able to find the limits of both my physical fatigue as well as my neurological fatigue, crush them both and push me much further into an entirely new realm of exhaustion.

My videos are below. The significant thing to understand is that until I saw her, I was doing similar exercises always facing forwards on the CoreAlign machine, with the comfort and security of the ladder in front of me and with both arms bracing me. With her, we turned everything sideways, so that there was literally nothing in front of my knees and I could only hold on with one arm. To say that it pushed my boundaries is a massive understatement and now I have the satisfaction of knowing that in just a couple of weeks, she was able to dramatically push my limits and get me to work in that sweet spot of struggle, abject fear that I may collapse, and the ensuing accomplishment.

And I can finally remember, and relive, the feeling of exhaustion.

 

 

A gander through Bali & Lombok

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One thing became very clear within minutes of driving out from the swanky, sparkling international airport in Bali: this was NOT going to be an accessible place for a wheelchair.

While I’ve learned to transfer into and out of most cars relatively comfortably – Hummers and massive pickup trucks aside – the minivans that taxis in Bali preferred (that looked like a Dodge Caravan that had been squished on both ends, making it taller and more compact) were a challenge to say the least. The sidewalks were narrow, potholed, bumpy, and their frequent stone steps made them completely unusable. Almost every single store or restaurant had at least a couple of tall, stone steps to enter. And all four of our lodging options – despite my meticulous review of online photos and numerous phone calls and emails confirming the lack of steps, obstacles or other impediments – indeed presented us with unexpected challenges.

But amidst all of these day-to-day struggles and unforeseen hiccups, we were blessed with incredibly helpful people who were always eager to help. I want to steer clear of the exhausted and overused trope I’ve read in so much travel writing and speak about the “friendliness of the locals” but I know no other way to admit just how helpful the locals were at all times. They were fantastic, never once approaching me in an uncooperative way or with confusion about how I enter or exit a particular building or car or storefront. We were consistently greeted with collaborative attitudes and helpful smiles. Yes we were tourists paying for their services, but I’ve traveled enough to know that simply paying someone for their work doesn’t necessarily result in sincere warmth and cooperation.

Even at the airport, as we were waiting on the tarmac to board our little plane that would make the 30-minute hop over to Lombok, Bali’s much quieter and less developed neighboring island, once the airport staff finally realized what we had repeatedly told them (that I would need assistance getting up the steep steps into the plane), they only scratched their heads in confusion for a couple of seconds before they sprang into action and one unfortunate baggage handler had the pleasure of piggybacking me up the stairs, inside the plane, and into the seat.

In fact, the only sideways stares and resentful glances I got were from the other tourists. The locals always treated me with respect but it was the European and North American travelers who made me feel the most uncomfortable. At one point, I practically had to hold Brita back from unleashing a verbal tirade upon an elderly French couple who seemed to go out of their way to be unhelpful and rude every time I was near them.

It was a wonderfully relaxing trip and allowed Brita and I to have some much needed downtime. I had never taken such a long break from my rehab and exercise but it became very clear that my body desperately needed this time to unwind, rest and relax. Every time I got antsy about my nonexistent exercise regimen, I reminded myself that after four years of going going going and working as hard as I had been, I was due to give myself a break.

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On the snorkeling boat to Menjangan Island

One of the highlights of the trip was doing an all-day snorkeling venture in what many people considered to be one of the best snorkeling places in Indonesia, if not all of Southeast Asia.

It took some friendly boat workers to help me on and off the rickety motor boat, but once I strapped on the snorkel and got in the water, I was in my element, loving every weightless moment and appreciating the opportunity to do a unique and memorable activity in a comfortable physical state, outside of the wheelchair and free of the confines of gravity.

While there were certainly some frustrations – not being able to explore as much as I wanted, physical pain and discomfort, and a steady flow of logistical challenges – Brita kept asking me if it was all worth it. If the long travel and the unfamiliar terrain and the different cultural attitudes and the physical struggles were all worth the effort?

After years of craving to go abroad and finally having the opportunity to feed my desire for international travel and novel explorations, my unequivocal and repeated response was YES.

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Bridging to the future

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There is one exercise that has been consistent with every, single practitioner that I’ve worked with since my accident, and that’s bridging. If you don’t know what it means, you’re not alone, as it’s common in yoga and some other practices but not your every day gym workout fodder like pushups, situps, lunges, etc.

Bridging involves lying flat on your back with your knees bent, feet flat on the ground, then lifting up your pelvis and torso so that you have more or less a straight line from the tops of your knees down to your shoulders. (Ok if my description was no good, feel free to jump to the video at the end of the post and come back to keep reading….). It’s not a massively complicated movement, but in its simplicity lies its importance.

I started trying to bridge shortly after my accident but I needed a lot of help. Whoever was with me had to hold my knees in a bent position, apply enough pressure to my feet to keep them from sliding, then literally left my entire torso for me (usually using straps of some kind) while I tried to visualize the movement. I would try and try and try, I would dig my elbows into the ground and attempt with all my limited might to somehow get my core up into the air and hold it there. I would think back to all the yoga classes I had gone to, in which bridging was a relatively painless task, and I would try to summon my spirit. But without any motor control of my abs, hips or legs, and with my knees flopping around from side to side, it felt like my torso weighed a thousand pounds and that lifting that mess of organs, bones and muscles would slight me forever.

Fast forward to a few days ago, following up on the work I did in Maui where I was finally able to start using my glutes and hamstrings and better engaging my back and abs, and here’s what happened:

 

I was thrilled. Especially since the therapist is giving me minimal assistance and just helping me with my knees a bit. She even lets go of me completely once I hold my pelvis up in the bridge.

There are few exercises that are so consistently emphasized by every practitioner in SCI recovery so I recognize the importance of this accomplishment. One of my therapists told me that in his experience, everyone who he knew who had recovered the ability to walk could bridge; that it was essential to the necessary movements of walking.

For me it’s validating to know that after literally thousands and thousands of struggled repetitions over the span of almost two years, I was finally able to unquestionably accomplish this movement which had seemed near impossible for so long. It is just a small step, and it’s not perfect yet, but it’s one less thing on my giant recovery to do list.

Bridging a damaged connection

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“My legs are responding well to me today.”

“C’mon quads, you’ve got enough strength in you for another few squats!”

“Usually it’s my right hip that is stronger but today my left hip is doing pretty well.”

Feeling a distinct separation between the upper and lower bodies is inevitable in Spinal Cord Injury. Obviously, the function of my hips and pelvis and legs and feet is very different from the function in my arms and chest and upper body. I recently starting noticing that my language had reflected this separation as well, that I was frequently talking about my legs as if they were a disconnected part of my body.

This was the result of progress after all. I had only recently started to feel more of a connection with my lower body because I had finally started to gain tiny traces of movement and control over parts of my legs, especially my quads. But with more progress comes greater expectations, at least for me. Since I had spent the better part of the last two or three months working on reestablishing that damaged yet still present connection to my legs by doing squats (like the ones I shared in a previous post), practicing standing with little assistance and modifying my walking exercises, I had started to expect more out of my legs.

I have written before about my belief of the importance of language and the power that words can have on healing and recovery. I’ve been conscious and careful about what words I use to describe myself or my body but somehow it took me a while to realize that referring to my legs as “they” and saying that “they’re responding well or not well to me” was falling into this trap that I had tried so desperately to avoid.

There is no “they” because it’s all “me”. And just because the signals getting through to my lower body are a bit weak doesn’t mean that they are cut off from the rest of me. So I will do my best to avoid this language misstep especially since I should be celebrating the fact that my legs are doing so much better and responding much more than they used to.

I’m always a bit hesitant to share videos of progress as I don’t ever want to give the wrong impression and lead people to think that I’m more healed than I actually am, but I decided it’s worth sharing the following two videos of my walking progress.

The main thing to notice in these videos (other than those incredibly fashionable leg braces that support my ankles) is that I’m locking out my own legs. In other words, my knees are not being held in place by the therapist (like they used to) and I’m able to initiate, establish and maintain one knee locked and stable while the other leg takes a step with assistance.

In the second video it’s harder to see the action of the knees but you can still see that the therapist is only helping me to complete the step forward. I’m doing most of the rest and if you pay attention to my right foot, you’ll see that I actually take a few steps with no assistance at all on that foot! It’s definitely sloppy, and it’s still a long ways to go, but it’s a start. I’ll take it.

SCI Survey: Results and Summary

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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

Utah Rehab Update – The Lokomat

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I wanted to send out a quick update on the rehab I’ve been doing here in Utah. I’ve had a great time here so far, meeting the inspirational founder of this facility and a fantastic group of physical therapists who are some of the most knowledgable and experienced professionals in the field of Spinal Cord Injury Rehab. It’s also been great to meet some other SCI patients, all at various stages of recovery and some even on their feet, walking independently.

I always said that I didn’t care if I never met anyone else with my level of injury who had recovered, because I would still push myself endlessly to reach my goal, but I must admit that it’s relieving, motivating and inspiring to meet other people who broke the same vertebrae as me and are back on their feet. That said, one of the things I’ve learned here is that no two SCI patients are the same. Even though I’ve met a number of people here with the “same” injury as me, there are many unexplained phenomena in terms of each person’s respective challenges and their prospective recoveries.

Ok so let’s get right to the fun stuff. I’ve been able to do some new exercises and use state of the art equipment that I had not previously tried which has been pretty fun.

You ever wonder what one $350,000 piece of equipment looks like??? Well let me introduce you to the Lokomat:

This is a revolutionary machine for SCI rehab as it’s adjusted to the exact length and size of my legs not to mention that everything – from the amount of weight I’m bearing through my legs to sensing how much effort and movement I’m giving to the walking – is precisely measured and captured in a computer. Nearly everything can be adjusted and tweaked to suit the particular person and well, it’s just pretty damn cool. Yes I do look a bit like Robocop walking but it feels amazing to stand upright and have such a natural stepping feeling for the first time since my accident.

One more video, just to show you a different perspective. Here you can see two important things: 1) the screen in front of me which is basically a virtual reality depiction of me walking and my movement is reflected in the digital game 2) the mirror below the screen, showing my legs walking:

There are only a handful of these Lokomats throughout the US so I’m very fortunate to have access to this one while I’m here in Utah. Stay tuned for another update soon…

A much needed change of scenery

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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.