My own little island

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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

Something to look forward to

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It’s easy to get overwhelmed with the slow pace of recovery following my Spinal Cord Injury (SCI). I have written about this before, about how challenging it is to work SO hard every day and focus so much of my energy on healing and recovery, yet accept that the changes and improvements come oh so slowly. (But the good news is that at least the improvements HAVE been occurring…).

Patience, as it turns out, is one of the most crucial factors for anyone wanting to recover from this devastating injury, and patience, as I’ve known my whole life, is absolutely NOT a quality that I embody.

Imagine living every day with no idea how soon your body will improve (if at all) and with no assurance that you’ll ever get to achieve your objectives. Imagine going through the majority of your day working towards a goal that may not be realized for a matter of months or years. That, in a nutshell, is what I mentally encounter and struggle with every morning when I wake up, and every night before I go to sleep. It’s enough to drive someone crazy, but thankfully I’ve maintained my sanity thus far. (Note: I will do my best to warn all of you with a cautionary blog post if I ever feel like I’m going over the edge…)

One tactic that has helped me maintain my focus and patience, is to always have something to look forward to.

This is something I’ve done my whole life actually, as a way of rewarding myself for completing a task or having the patience to get through a challenge, obstacle, adverse situation, or simply, a long wait. That said, it’s taken on a new precedence now as I use this tactic all the time to keep my concentration and focus on recovery intact, without getting overwhelmed by the daunting elements of time and uncertainty.

As long as I have something fun and positive to look forward to, it gives me a reason never to give up or lose patience of my ultimate goals. I tell myself that even though I may be frustrated or impatient right now, I gotta make it through to (insert event to look forward to here), and then I’ll reassess; no giving up before that. Once that event happens, I think of the next one and the process begins again.

I’m not necessarily referring to looking forward to huge, important moments or events. Most of the time, it’s as simple as a relaxed weekend brunch with my girlfriend, an upcoming meetup with friends, a trip to the swimming pool (one of my favorite therapies), or an afternoon in the park. It doesn’t take much. The beauty of this is that when there is a bigger thing to look forward to (i.e. a trip out of town), it motivates me even more and fuels me to keep working hard until I get to that moment.

I know it seems simple or obvious to point this out, but the fact that I’ve become so conscious of the importance of this tactic means to me that it’s worth acknowledging and appreciating.

Making magic in Maui

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It’s impossible not to feel energized, inspired, motivated and yet completely relaxed and calm when I enter into Alejandra’s peaceful studio surrounded by palm trees and multi-colored flowers swaying in the gentle, flowing breeze. This is upcountry Maui after all, the quieter part of the island away from all of the resorts, hotels and most of the island’s tourists. We’re minutes from one of the best kitesurfing beaches in the world, which makes sense since the only thing disrupting the bright sunny skies and the nighttime tropical showers is the persistent wind, not fierce or annoying but warm and invigorating.

Within seconds of entering this incredible space, I fully understand why Alejandra has chosen to have her studio in this location. I encounter an unquestionable energy of healing and positivity as I’m greeted by the warm smiles of Alejandra and her colleagues. I immediately know that I’m going to be able to get some serious work done here, so I get right to it…

It’s difficult to describe exactly what Alejandra’s method is. She has created her own system of exercise/movement/training/therapy that she calls Neuro Kinetic Pilates but it’s so much more than just Pilates. The moment I started working with her, I could tell how skilled she was. Following the request she makes to all of her clients to take my shirt off, I felt slightly overexposed, especially with my belly popping out which is a result of still not having control of my abs. She reassures me, “If I’m gonna get anything done, I have to see how your body moves and I have to start poking to see if those muscles are firing! Are you ready for that?”

Alejandra got me up on the Reformer, the Cadillac, the Barrel and a few other pieces of equipment that are commonly used in Pilates. She used pulleys and bands and cables, stretched me and yanked me and got my body in positions it had never been in with the final result being me more exhausted doing her exercises than anything I had previously done. Each exercise I did consisted of multiple simultaneous prompts from her asking me to do what seemed nearly impossible. How could I possibly hold my balance in this position without falling over, while still engaging my lat muscles, keeping my collarbones open yet chest in towards my ribs, breathing with my diaphragm and trying to suck my belly in all at the same time??!!

Alejandra uses fascia lines to connect different parts of the body to each other and awaken neural connections that are damaged. And just so you know, understanding fascia lines isn’t some alternative, eastern medicine, hippy dippy approach. In fact, when I asked her if the fascia lines had anything to do with acupuncture meridians, she simply shrugged her shoulders and said that she had no idea because all of her training was in western medicine. Simply put, fascia is the connective tissue that surrounds and connects muscles, nerves, and blood vessels and runs through our entire body. One way to think of it is that instead of having over 600 separate muscles throughout the body, we have just one muscle with 600 different parts to it but all interconnected and related. (Check out this link to learn more)

So I’ll leave it there for now and throw in a couple videos of some of the exercises that I did, so you can see what this all looks like. I’ll write another post about my work with Alejandra with more videos and maybe get into the theory a bit more so stay tuned….

If you build it, will it come? And when? And how? And….

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One of the most memorable movie quotes of my childhood was from “Field of Dreams” where Kevin Costner is told, “if you build it, he will come” in reference to building a baseball diamond in his cornfield which will summon his beloved baseball players from the past to come and play ball. A pretty straightforward cause and effect statement. Do this, and that will ensue.

I find myself thinking of this quote a lot recently, in the context of my recovery and dealing with all of the questions and doubt that arise and try to throw me off track. I’ve been “building it” for over a year now. This time last year is when I felt strong enough to ignore the lifestyle of adaptation and flat out laziness that the medical establishment was providing me, and took the initiative to start an aggressive routine of rehab, exercise and physical and mental hard work.

Up until my accident, I had always understood that the causal relationship between hard work and reward was reliable and relatively short-term, particularly with physical improvements (I wrote an entire post about this subject). Now, after a year of working so hard everyday, of literally channeling so much of my energy towards recovery and healing, I’m often left wondering…ok, can someone throw me a bone here? I need something to happen already!

Yes I’ve had improvements, yes my health and overall strength has improved, yes I can still wiggle my toe, yes I can sit taller, push further and continue to challenge my capabilities and improve upon them, but all of that said, I have to put this out there: I need a breakthrough.

I’m reminded of the conversations I’ve had with friends so many times about being single and wanting to find a girlfriend. Or of changing job paths and furiously job hunting and the advice we would always give each other when frustrations would hit new highs. “You’re looking too hard for it. Sometimes these things happen when we ease up on searching or expecting them, and then all of a sudden, boom! it happens.”

I have no doubt that this applies to my current situation. I want improvement badly. I want validation for all of this hard work I’ve done and I want it to be more than a toe I started wiggling nine months ago or gradual strength that I’ve built up over time. But I’m looking so hard for it! I wake up every morning and wonder if this will be the day that I’ll have that breakthrough. I’m trying not to expect it, but I expect it. And then I try to rid myself of the expecting of not expecting. And so it goes….

I wish this injury was more forgiving in this way. I wish there was a formula and even if I knew it would take a long time, I could find peace in knowing that the next breakthrough would indeed arrive. But that’s not the way this injury is. It rips you apart and takes away everything and leaves you with more doubt, uncertainty and ambiguity than you could ever imagine.

I can hear the advice from everyone already: Get rid of the expectations. Cultivate patience. Find peace with the situation. Make the most of the present moment without any consideration of the future and what it will bring. Life is too short so enjoy what you have right now and relish every moment.  I say, easier said than done. 

The funny thing is, I’ve actually been able to do all of these things but only to a certain extent. Much of my efforts recently have revolved around patience and letting go of expectations, and I’ve certainly gotten better at this. I have no choice but to continue doing these things and physically continuing to work as hard as possible but I still can’t help thinking that because I’m building it, it will come…

Reflecting on my CORE Center experience

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“Sit tall, stand tall, walk tall.” Those were the words of Taylor Isaacs, the kinesiology professor/exercise therapist/all around SCI and body movement master who has helped a number of people achieve significant recovery from devastating injuries. I was honored to spend a few days last week at CORE Center working and learning from someone who takes a different approach to recovery than the traditional methods I’ve become accustomed to. It’s not easy to sum up Taylor’s approach but if I had to start with one word, it would be holistic.

Upon arriving to Southern California and creating an instantaneous bond with Taylor, Aaron Baker, Laquita and the CORE Center family (see my last post for a background of these amazing people), Taylor asked me questions. LOTS of questions. He wanted to know every detail about my accident, every detail of my regimen since then, my diet, my sleep patterns, my energy levels, my specific progress and how I had measured it, my psychological state, and as I conjured up the answers to the many questions, he took meticulous notes and responded in his easing South African accent, “brilliant, excellent, brilliant.”

I didn’t know what to expect from Taylor but within seconds of meeting him, I knew I could trust him, and that I would. After all, this guy was an expert among experts about how the body moves and had spent years applying his previous knowledge and varied experience with everyone from high level athletes to everyday people to those of us suffering from injuries like SCI. What I saw in Taylor and what made me so excited to work with him was an attitude of possibility and capability. These are words not commonly spoken to someone who has suffered a SCI; after all, we’re always being reminded of our disability and told to adapt to the circumstances, instead of trying to tackle the circumstances head on and bring about change.

The time I spent with Taylor was incredibly fruitful. After a couple days of meticulously testing different muscles and assessing my current condition, I was a bit surprised that the exercise regimen he sent me home with didn’t involve standing or leg exercises or weights or really anything complicated. It was a 20 minute daily regimen that he called Postural Reprogramming, meant to correct my posture, strengthen my abdominal and back muscles and get me sitting taller, which would lead to standing and walking taller.

Of course there are no guarantees from any therapist or practitioner and Taylor did not prognosticate anything. But what I learned from his approach was to look at the body as a whole, and understand that before I could take a step or stand up on my own, I would need to get my body into the right position for it to do what it wants to do: to move as efficiently as possible or put another way, to use the least amount of effort and energy to perform a movement. According to Taylor, “by doing this, we’re going to take those blocked neural pathways, we’re going to flood them with neural energy and turn them into neural superhighways!”

I’m including a couple of quick videos that are examples of the simple, yet challenging movements that are a part of my Postural Reprogramming regimen:

 

As I wrote about in my last post, the other main reason I was excited for this trip was to meet Aaron Baker, a true hero in my eyes and someone who consistently inspires me. I felt a kinship with Aaron the moment I met him. Of course, he has been through this injury and achieved outstanding recovery but it went beyond that. Through many hours of conversation, we were able to share our perspectives on our injuries, our lives and the world as a whole. Aaron’s mindfulness, focus and intention emanated from him and inspired me further. It was clear to me that despite his astounding recovery, this injury was still a huge part of him, and it always would be, but he had found peace, something I still have trouble doing. It was an honor to share this time with these amazing people and I’m already looking forward to my next visit to CORE Center. Until then, I’ll be reprogramming my posture…

CORE Family

One in a million and a trip to SoCal

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One in a million. Those were the odds that were given to Aaron Baker for his chances to ever feed himself again. Aaron suffered a Spinal Cord Injury similar to mine 14 years ago and these were the words that his doctor told his mother. Nothing about walking, nothing about standing up on his own, or even pushing himself in a wheelchair, but just simply his chances for feeding himself.

In my last post I shared the new page on my blog highlighting the stories that are inspirational to me and front and center among those is Aaron’s story. Through years of hard work and unwavering determination, not to mention incredible support from his mother and community, Aaron slowly regained control of his body and was able to fight his way back to his feet, and to his bike! A formerly sponsored motocross racer, he traded his motorized dirt bike for a road bike and ended up crossing the country twice, riding over 6,000 miles to share his story and raise awareness about SCI. Now he has opened a rehab gym north of Los Angeles with the intention to help as many other people with SCI and other injuries as possible.

I bring this up not only because of the continued inspiration I get from Aaron’s story but also because after speaking to him on the phone and learning more about the methods that he used for his recovery and his amazing, one-of-a-kind therapist Taylor (a kinesiology mastermind who now runs the therapy program at Aaron’s gym), I’ve decided to take a short break from my typical schedule and come to Southern California for a few days to mix things up again. I’ve mentioned how helpful it is for me to change my patterns, go somewhere new, meet new people and have different people work with me so that’s what has brought me here.

I could not be more grateful for this opportunity to come and meet people who in my eyes are like superheroes. I see people like Aaron, Laquita (his mother), and Taylor as beacons of shining light amidst a pervasive darkness in the SCI recovery world. For every one like them there are too many other people who say that to not get used to this “disabled” reality is to do yourself an injustice and to put “unrealistic” dreams of recovery to the side and move on with life. I’m honored to have this opportunity to meet these incredible individuals and I’m looking forward to sharing my experience with them in my next post.

Sharing what inspires me

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I’ve had the great fortune of being told that my blog is inspiring to people. I started this blog simply as a means of communicating the challenges and triumphs of my recovery from this devastating injury in an efficient and interesting way. So whenever someone tells me that my words are inspiring, I’m honored, flattered and overwhelmed with gratitude. In that same spirit, I want to take a moment and share some of the resources, stories, and people out there who have inspired me throughout my journey of recovery.

One of the initial (and perpetual) challenges of Spinal Cord Injury is the lack of information and resources. In the hospital, they gave me a book that probably every person with a SCI receives upon leaving their inpatient rehab facility. The front cover has a smiling guy sitting in his wheelchair with an almost sadistically grinning child in his lap and alongside him is an attractive woman and a creepily friendly-looking German Shepherd, with the title: “Yes, you can! A guide to self-care for persons with Spinal Cord Injury.”

Instead of sharing the inspirational stories of others with SCI who have recovered, of those who have challenged their condition and come out victorious, they want you to accept your fate as a “disabled” person and start getting used to your “new” life. Complete with a smiling child and a menacing dog.

That’s exactly why I decided to create a new page on my blog entitled, “Inspiration & SCI Resources.” After over a year of living with this injury and countless hours of research, reading and internet searches, I have collected quite a bit of information on SCI and the people it has affected.

Now I want to share those stories that have most inspired me, those people who I’ve learned about who motivate me to keep fighting and to keep working hard towards my goal. We live in a society that emphasizes individuality and independence, but the reality is that none of us can achieve our objectives without the help or presence of others. I feel like it’s essential for me to recognize the inspirational stories that have most helped me through my recovery thus far, and hopefully serve as a resource for anyone looking for either an inspirational story or more information on SCI.

On a final and slightly unrelated note, my friends recently organized a fundraising event in which I gave a speech about the importance of words and why specific words matter so much to my recovery, and thanks to a generous friend who photographed and recorded the whole event, we have a video of the talk which I’d like to share here. It’s more than a couple minutes long so I don’t expect everyone to watch, but if you do and want to share your thoughts, you know how to find me.

http://steinbergimagery.info/arash-bayatmakou-words-matter/

Wonders of the internet

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The internet really blows me away sometimes. I know I’m stating the obvious and sounding pretty cliche so let me say this instead: I can’t imagine what this injury would be like 10, 20 or 30 years ago, specifically in regards to the difference in social connectivity then vs. now.

Last week a friend posted my Al Jazeera video at Ekso Bionics on Upworthy.com, a site that I didn’t know much about previously. Within minutes, I had emails, blog comments, Facebook messages, and all kinds of communication from people all over the world who had seen the story and felt inspired enough to read my blog and to contact me personally. I was blown away. I have had a couple of big social media days since I started writing this blog but this broke all the records. The communication kept flooding in over the weekend and I’m still barely catching up to all of it.

As a result of just this recent wave of traffic, I’ve made new contacts, connected with people who have the same injury as me to swap stories, received extraordinarily generous offers of help and support from complete strangers, and read sincere, kind messages of love, positivity and encouragement from people I don’t know. I make it a frequent point on this blog to share my gratitude and always recognize those things I do have despite all of the adversity that life has thrown me with this injury, so I have to take a moment to express my thanks to everyone who has read my blog whether you’ve been following me from the beginning or just recently joining me on my path to recovery.

We live in a time where I’m fortunate enough to click a button and upload a video that instantly goes global and motivates people to send me their words of support. There are websites out there specifically to help people raise money or organize events to give themselves a better shot at improving their condition. By connecting with some of the readers and visitors of my blog, I’ve learned about cutting edge treatments for spinal cord injury (SCI), brand new devices and equipment, and read about prolific research that is paving the way for a better understanding of how the spinal cord heals. I can’t imagine how different it would be if I didn’t have access to such forms of communication and (I have to admit) I wonder if or how much my recovery would have suffered if I didn’t live in an age where so much information is so incredibly accessible.

Last year, when I was still in the hospital, I had my first conversation with Grant Korgan (a fellow survivor of SCI and an incredible and inspiring person) and the first thing he said to me as I wheezed and forced out a barely audible sentence was, “bro, there is SO much love out there, just waiting for you.” I’m feeling grateful to be able to realize this every day, and in novel and interesting ways. Thank you all for giving me so much continued inspiration and for keeping me on my path to recovery.

One year ago…

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Today marks one year since I badly broke my neck, since my life turned upside down, and since everything I ever knew about my body, my health, my accomplishments, my ambitions and my future were all thrown out and it all hit the restart button. I have to admit, I’ve been dreading this day for quite some time now and I could feel in recent weeks that my stress was building about what this day means to me and what I should do moving forward.

On the one hand it devastates and frightens me to think that an entire year has gone by since I last willingly moved my legs. I used to get antsy and grumpy if I went a few days without running, biking or exercising my entire body somehow. For the last year I’ve had to settle for rebuilding my body piece by piece, and slowly accepting that I could (and would) still regularly push myself to my physical limits, even if I didn’t have function of my entire body. It’s scary and depressing and horrifying to realize how much has changed in me physically since before my accident. To think of the physical accomplishments that I had, to think of how much respect I had for my body and how that translated to what I ate, how I behaved, and how I approached life in general, and to think that all of that has transformed now…words can’t describe it.

I remember waking up in the hospital, under heavy medication, staring at the ceiling because I was unable to move my head and not being able to see my legs but knowing that something just didn’t feel right. I remember every conversation I’ve had with every single doctor and how each of them wanted to show that they “had the answer” by telling me how soon my body’s rehabilitative abilities would stop. Some told me six months, others said one year or more but they all had a firm belief that after a spinal cord injury, the healing would reach this magical point in time and just come to a halt.

Never mind that this sounds bogus and arbitrary. Never mind that case after case of people with this injury have had changes and improvements in their body two, five, eight, ten, twenty years after their injuries! Never mind that by saying these things, they were placing a limit on my potential and possibly devastating my spirit. Never mind that their “medical knowledge” was supposed to trump the power of will, of hope, of dedication, of faith, of perseverance, and of love.

And I don’t just mean the love that comes from family, friends, community and others, but of the love that comes from within. The love I had for everything that I was capable of before my accident. The love for enjoying life on my own terms, the love of being able to stand and walk and jump and kneel and lean and kick and tumble and tumble and tumble…and RISE. When do we fall and NOT want to get back up? Does it ever happen that a baby that’s learning to walk stumbles and falls and doesn’t try to do it all over again, albeit after a few tears? So why should this be any different? If a baby can do it, why can’t a grown man, let alone a grown man who has so much still to live for?

I remember leaving the hospital seven weeks after my injury and my doctor (who I’d seen and spoken to every single day during my time at inpatient rehab) telling me not to engage in too much activity or put too much hope or effort into my recovery. “All of this acupuncture, exercise therapy, alternative interventions and these other things out there…all of this is just experimental and there’s no proof of its potential efficacy in healing after a spinal cord injury. The body will heal as it will, there’s not much you can do so you might as well just wait for it to come.”

Oh really? Well just watch me…

I’m not naive. I’m not expecting everything to just go back to the way it was. I know that recovery is slow and the last year has proven that to me over and over. Nothing about this process is going to be easy or quick and I’ve accepted that. But I also know that my body desperately wants to get better. I know that it makes no sense for the body to heal for 365 days and then on the 366th day just suddenly stop and say, “ahhhh ok, I think we’re done here.” I know that I’ve made extraordinary gains in the last year and I see no justification for the belief that things are just going to slow down or stop now. My attitude isn’t scientifically or medically proven but I think that my recovery is one of the many things out there that cannot, and maybe will not, ever be explained by medical reasoning.

Despite the overwhelming challenges that come with my current situation, I’m extremely grateful for some of the lessons that I’ve learned in this last year, many of which I’ve written about on this blog. I’ve learned of the resilience of the human condition and how strong we can be in the face of overwhelming adversity coming from so many different angles. I’ve learned about the meaning of faith and how I’ve been able to interpret my own understanding of what I believe in, and why. I’ve learned about the surprises that can come from waking up one morning and discovering that a body part has suddenly regained its functionality. I’ve learned about the importance of perspective again, and again and again and how I will always be grateful for what I have. I’ve learned that positive thinking can be a conscious practice taking place underneath the surface of willful actions or it can come in the form of dreams, reminding the mind and body and soul of how great it feels to be able to walk.

More than anything though, I’ve learned about the intensity and magnitude of the power of intention and will. I’ve learned that hope is always alive as long as the intention for it is active and strong. I’ve learned that as difficult as it may be, it’s possible to listen to the “experts” and actively work to prove them wrong; to show an entire industry that’s based on suppressing my expectations and accepting the unacceptable, that there is another way. But it can only come if I truly believe in it and am willing to spend every last of drop of tears and energy and blood into pursuing it.

I spoke with someone recently who has had a lot of experience healing people who have suffered spinal cord injuries. She believes that the first year is purely a matter of dealing with the massive trauma that has occurred, that true healing doesn’t really begin until that trauma has died down and that happens in the second year and beyond.

I too accept this belief and I feel renewed and reenergized about my recovery. I know I will never forget this day again, that it’s an anniversary of sorts. I acknowledge this day now, and am ready to move forward, to keep my intention and will focused on my ultimate goals and to stay on my path to a full recovery.

My 15 minutes of fame

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Just a couple days before I went to Ekso Bionics for the first time to walk in their exo-skeleton, they asked me if I would mind talking to “some friendly British guys doing a short documentary” about my initial experience. A few hours later, they called me again and asked if the British guys could come to my house and ask me a few questions before I actually walked at Ekso. I agreed to everything, assuming these guys were doing some esoteric, low-profile documentary project that no one would ever see.

The friendly Brits setting up at my house
The friendly Brits setting up at my house

The British guys showed up at my house (and indeed they were very friendly), they explained that this was actually for Al Jazeera English, a very well reputed international news channel with a growing influence and a viewership in the hundreds of millions worldwide. I was STOKED. I’d been reading and watching the shows on Al Jazeera for years and was always impressed by the quality and depth of their programs. Now I was going to be a part of it??

So let me say a couple disclaimers about this show before I sign off. Firstly, in full disclosure, the fact that this happened was simple good fortune. These guys didn’t seek me out personally, it just so happened that they were here that week and I happened to be one of the people who was walking for the first time on those days they were here. The fact that they decided to profile me and build the program around my story was a nice surprise.

Secondly, while I was filming with them and answering questions, I was repeatedly asked how excited I was about the future of Ekso and how it could apply to me. My response was honest and I want to reiterate it here. I think what Ekso is doing is fantastic and prolific. They have developed incredible technology that will revolutionize the treatment of people with Spinal Cord Injury. While I’m extremely grateful and excited about using Ekso as much as possible and reaping the benefits of their product, I also have no intention of using Ekso for a long time. My goal remains the same: to stand and walk and regain functionality in my lower body without any help. I see Ekso as a wonderful tool for rehab and recovery but I hope and plan on not using it for everyday life. It’s stubborn, but that’s just me…

Alright so here it is. Feel free to spread the word:

http://www.aljazeera.com/programmes/thecure/2013/06/201362384057310764.html