Stand up and deliver

I’d like to share an incredible announcement with all of you. This past weekend, on the shores of beautiful Lake Tahoe, with the mountains that I grew up visiting through all my childhood in the background, and on a gorgeous late summer afternoon, I stood up on my own in a walker, and asked my amazing girlfriend Brita to marry me.

After realizing that I wasn’t joking, she shook aside the surprise and disbelief, stood next to me, eye to eye (a position we have only recently been able to enjoy) and said YES.

As all of you know, the accident that I suffered two years ago tragically changed my life and forced me to enter a world I had never expected. My career, my physical abilities, my independence and everything I had known until then were thrown into limbo with no explanation or resolution that any of it could come back to me or improve in any way possible. However, my ability to love, be loved and recognize the qualities of a truly one of a kind person were not compromised.

Brita and I (being introduced on an old-school blind date) had only met four months before my Spinal Cord Injury, which occurred while she was abroad finishing her graduate studies. When she came back to the US and saw me in the hospital, I immediately told her that I gave her full approval to move on from me, that this situation was going to be so incredibly arduous and challenging (and I didn’t even know the half of it….) that I had zero expectation or resentment towards her if she chose to let our relationship go. She had a green light….and she didn’t take it. She shook her head and emphatically and unhesitatingly told me that she wasn’t going anywhere, that she was in it for the long haul.

Throughout this time, she has been the biggest source of support for me, constantly listening to my rants and frustrations, praising my accomplishments and unequivocally maintaining the faith that I will get back on my feet, even when I question my own faith and hope. I truly believe that because of this experience, we have gotten to know each other on an entirely different level, and that’s why I had no hesitation that I wanted her to be my partner for life.

I had held a secret for the last few months that I shared with no one. I told myself that once I could stand, I would propose to this beautiful woman. Well the secret is out. It means so much to me to be able to have done this standing up, at eye level, and with the confidence that the hard work I’ve put in the last two years has paid off.

I’ll stop there as I could go on forever, but a big thanks to all of you who have supported me through this time. I’m honored to share this with you. And a huge thank you to everyone who helped me plan this special day and for our friends who were there that day, hiding in the trees and taking photos from afar and making this a truly memorable moment.

Much love and gratitude

Standing proposal

 

Summertime Nostalgia

“So what do I need for backpacking this weekend? It’s going to be a shorter trip but I still need food, clothes, and supplies for three full days and nights… And next Saturday I’m going on a river float all day with friends, should be so much fun! Oh and I have to remember to borrow my roommate’s water filter for the next camping trip coming up in a couple weeks. Don’t want to be stuck in the mountains without sipping the good stuff from the streams and rivers!”

These were the typical thoughts running through my head during the summer time a couple years ago. Having spent the previous numerous summers working in the travel industry and with little free time, I had come to appreciate having the freedom to explore the many outdoors opportunities that were at my footsteps in Northern California. Yosemite, Lake Tahoe, the giant Sequoia trees, Big Sur, the coastal redwoods, and many of the gorgeous peaks of the Sierra mountains were all less than a half day’s drive from my urban life in the middle of San Francisco. I had the unique opportunity to live in a dynamic and fast-moving city and yet have access to some of the most beautiful natural scenery around; a truly fortunate situation to be in and one for which I was continuous grateful.

Fast forward to now and some things haven’t changed. My friends are still going on those backpacking trips, they’re still hard at work seeking undiscovered lakes or less traveled trails to explore and planning fun adventures. The river floats are still happening as are the epic day long bike rides that customarily include a pastry and coffee jolt or a cold beer conclusion. The roaring campfires (and the stories and laughter that come with them) are still burning strong, and the miles and miles of the fun-filled drives crisscrossing the varied topography of the California that I love so dearly are still being driven, albeit in slightly nicer cars reflecting the improved career trajectories of my thirty-something social community.

The major difference, of course, is that I’m not there.

It’s like watching a movie you’ve seen a hundred times but with one of the major actors missing. It doesn’t feel right.

To say that I’m envious of my friends’ adventures is the understatement of the century. I would give anything to be tromping through the mountains with a backpack on my shoulders, laughing and chatting and admiring the grandeur of mother nature’s best offerings. And honestly, the one thing that may be harder than not being on those adventures, is hearing about them first-hand and masking my frustration and resentment with my attempts to conjure sincere excitement.

So what’s keeping me sane this summer? Pretty simple actually. My desire to reach my shorter-term goals of recovery, some of which are looming closer on the horizon, fuel me just as much as a summer adventure would. I know that the sense of accomplishment I would receive from standing up on my own or taking a few unassisted steps in a walker would fulfill me more than these adventures did in the past. I’ve worked so hard for so long that seeing the fruits of my labor would give me immense satisfaction. While my current summer adventure is a bit more lonely, and a lot less scenic than my former escapades, the rewards are, to say the least, tantalizing, validating and worthwhile.

Two years since, and still moving forward

Yesterday, July 8th, marked two years since my Spinal Cord Injury, since everything that I knew about the world, about myself, about my body, and my life was turned upside down in an instant and launched me on this whirlwind of a journey that is recovery.

I wasn’t entirely sure if I was going to post about this strange date as its relevance is quite insignificant to me now. I remember last year, as my one year anniversary approached, I was stressed out and anxious (read my posting here if you’d like). Because the traditional thinking in our medical system says that most or all of recovery from SCI will occur in the first year or, if you’re lucky, in two, it was disheartening to think about the magnitude of that date and all that it implied. Oh how so much has changed…

Shortly after that day, I stopped counting the months since my accident. The eighth of the month, which had always been so present in my day-to-day consciousness especially as the calendar changed and a new month would arrive, became irrelevant. For the last many months, I actually completely forgot about the eighth of the month as I realized how unimportant it was. I told myself from the beginning that I was going to engage on the path to full recovery and that I would give everything I had to achieve my goals. Therefore, why should an antiquated way of thinking – an outdated medical approach that has been proven wrong repeatedly by those around me, one that quells and limits the spirit of recovery instead of encouraging it to flourish – why should that define my recovery? It shouldn’t, and it won’t.

I fully believe, as I have since the day I was injured, that with perseverance, diligence, unwavering commitment and by keeping my dream alive within me, that I can and will get back on my feet, no matter how long it takes. Also, I can’t overlook that an exceptional amount of my healing and breakthroughs have occurred only in the last few months! Maybe my spinal cord and my body did need a longer period of time to process and accept that initial trauma, but what started as the weakest me that me has ever known, has transformed into a period of continuous recovery and accomplishments.
Although it has been two very hard years, more trying, devastating, arduous, and insurmountably difficult than most anyone can imagine, I have learned tremendously during this time. I have challenged myself to an extreme I could never imagine and I have witnessed how much love surrounds me on this fight of mine. For that, I’m grateful. For the opportunity to continue on the path to realize my dream of walking and running again, I am hopeful and I continue to fight.
So thank you two year anniversary, thank you meaningless calendar date, thank you for reminding me that the human potential is not defined by 12 month cycles or doctors’ prognoses. If the spirit to heal is present, then the healing will persist. And further forward I push, looking forward to the next breakthrough and the next stage of recovery.

Bridging to the future

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.

Major Progress in Maui

As I’m wrapping up my time in Maui, I want to share a quick update on the incredible progress I’ve made through my work with Alejandra. This is going to be short and sweet as I’m going to let the videos do most of the talking.

We spent a good chunk of time everyday working on a specific exercise that was meant to target my glutes, hamstrings and calf muscles, areas of my lower body that I had very little connection to prior to my trip to Maui. In addition to the variety of other exercises and movements that have all been crucial to the development of these muscles, this exercise was consistent as Alejandra felt that it was necessary for my ability to establish new cerebral mappings and create mental connections to the back side of my lower body.

We started like this, with me standing on the Core Align, a machine with wooden, ladder-like beams in front of me, foot plates that slide back and forth, and with Alejandra crouching in front of me, bracing my hips and pelvis in place, and manually moving one of my legs using her hands while I held on for dear life:

About 10 days later, we had moved on to me bracing myself solo against the Core Align, maintaining pelvis control on my own, and extending my leg back on my own! I could only kick back in a short burst, and let the foot plate pull my leg back into place. This lasted for 2-3 minutes per leg before I got fatigued:

Today, only a week since the last breakthrough, I was kicking my leg back like before, only this time, I was able to control the leg against the resistance of the foot plate and slowly bring my leg forward to resting position. No loud slamming of the foot plate, no short bursts, but more leg control both extending back and coming forward. Although one leg was certainly stronger than the other, I was able to do this for 15 minutes per leg, which means a HUGE increase in endurance.

It’s been so satisfying for me to see the progress so clearly and so quickly as it’s a true testament to the value of the work I’ve been doing. I’m just sad for it to end, but already looking forward to the next time I can come back.

Update from Maui

I’ve had the incredible opportunity to come back to Maui and work with Alejandra and her staff and share her amazing perspective and approach to my recovery. I’m a little over halfway through my time here and I must admit I’ve been pretty unplugged from everything and everyone, but I finally have the time, motivation and videos/photos to give a quick update.

As a quick reminder, Alejandra has created her own unique form of therapy she calls Neurokinetic Pilates which utilizes the concept of Neuroplasticity (the belief that the brain and nervous system can repair and rewire damaged connections as a result of injury, illness, etc.) and the understanding of the lines of fascia (the tissue that surrounds and connects all of our muscles) to perform exercises and movements that mostly use Pilates principles and equipment. (I wrote a couple of posts about my last experience with her from a few months ago, if you want to reference, the links are here and here).

This time around, it was right back to work immediately after arrival from the airport. Alejandra is incredibly focused, highly motivated, and does not like to waste one second of  our time which are qualities that I share and a few of the many reasons I like working with her so much. We had barely finished greeting each other before we were back at it, analyzing what had gotten stronger with me, what was still weak and what needed to be done during my time here.

So far, the main emphasis has been on connecting and strengthening muscles that will assist me with standing and starting to take steps. Alejandra refers to these muscles as “sleepy” as they haven’t been used much and need to be reawakened. Her skill lies in the ability to come up with exercises that find that precise body position that I need to be in (and there is very little margin for error in terms of my positioning) in order to engage those muscles. If my positioning is ever so slightly off, then the ability to connect that muscle is lost. Once we’ve woken up those sleepy muscles, then it’s just a matter of strengthening that connection by repetition.

The main muscles we’ve been working on are my glutes and hamstrings – and to a lesser extent my calves – as these are the muscles that will allow me to bend my knee from standing, lift my hip and take a step. The following video/photos show some of the exercises we’ve done everyday to connect these muscles:

IMG_1035IMG_1046

 

 

 

 

 

 

 

 

 

 

 

 

 

Before I sign off, I have to mention Grant Korgan who has been an inspiration for me since I first got injured and was the one who told me about Alejandra and how much she had helped him with his recovery from SCI. I’ve mentioned and linked to him a few times on my blog but now I’ve had the great fortune to spend some time with him and his wife Shawna out here. Big shoutout to them, from Ale le le waterfalls on the east side of Maui.

Ale le le falls

Bridging a damaged connection

“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.

My own little island

Let my absence from my blog end! I’ll explain later why I haven’t kept up for a while but for now, it’s time for another update.

I’ve recently come to the conclusion that to continue my effective recovery from Spinal Cord Injury (SCI), I have to remain isolated on my own little island.

I’ve probably mentioned in the past that recovery from SCI is all over the place, to say the least. Depending on a variety of factors (many of which are not well understood, no matter what the medical community says) one’s ability to regain function, get stronger and recover is largely unpredictable. I’ve also explained how one’s initial functional capabilities following the injury is largely dependent on where the injury occurred on the spinal cord (higher up towards your neck and head or lower down towards your tailbone). But here’s where the ambiguity of this injury (and its recovery) becomes prominent.

People who are injured in the same exact location on their spinal cord can have drastically different capabilities and recoveries. For example, I’ve met a few dozen other people who broke the exact same vertebra in their neck as I did, C5 and C6 in the lower neck. Each and every one of these people’s situations is different, as is their respective recovery.

Unlike more common and less severe injuries (i.e. a torn ACL, broken bone, strained muscle), there is no standard protocol for how to pursue recovery following a SCI, even for each specific level of injury. Some are left with little function in their hands while others have an iron grip; some with zero core control, others with boxer’s abs; some can wiggle a toe or lift up a leg and some can’t even feel where their lower body is in space (proprioception). As a result, the timetable for recovery is all over the place.

I bring this all up now because the desire to compare one’s injury to others’ progress and recovery is, I think, inevitable and only natural. I hear of another person with a C5/C6 injury who was able to move something or regain function at a certain time after their injury and I immediately start to compare to myself.

“Can I do that yet? What does it mean if I can or can’t?”

“I wasn’t able to do this certain thing that someone else did at a specific point after the injury, so am I doomed?”

“Well, if I wasn’t able to do this function at this time then I may never be able to.” 

“If this one specific aspect of recovery was going to happen (like it did for someone else) then it should have happened by now.” 

These are the thoughts that run through my head when I talk to anyone else with a SCI. While it’s inspiring and motivating to hear that someone was able to perform a specific task or function, it also messes with my head and threatens to endanger my confidence and resolve. That’s why I believe that comparing one’s SCI to someone else, no matter how similar they may seem, is a zero sum game.

I don’t want to stop these conversations with others about their recoveries, so what I’ve had to do is place myself on my own little island of recovery, and force myself to remain there, all by myself. It’s difficult because I want solidarity with others. I want to hear someone tell me that it’s going to happen to me because it happened to them. I want to think that my recovery is linked to others, that I can use their timetables to structure my own and manage my expectations, but that’s just not the way it’s going to be.

This recovery is a solitary one. Comparing doesn’t get me anywhere, which is why I’ll stay on my own little island, and keep working towards my goal.

***

I’ve been away from the blog for a bit because I’ve had my hands full following up on my survey and garnering momentum for a petition I started to change the way SCI is approached and dealt with. My goal is to get the word out, get as many signatures as possible to my petition so that I can get it out to multiple forms of media. If you’re interested in signing my petition, check it out below. If you have any connections to media (journalists, websites, news sources….anything at all) and you want to share them with me, I’m grateful in advance.

http://www.change.org/petitions/healthcare-providers-medical-insurance-companies-provide-the-minimum-care-to-paralyzed-individuals

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