Swim like a cannibal pioneer

Throughout my journey of recovery from spinal cord injury, as I’ve maintained my focus and commitment on reaching my ultimate goal of getting back on my feet and walking, I’ve learned the value of setting and working towards smaller goals. The proverbial mountain I’m trying to climb is bigger than anything I’ve ever experienced and I have been, and continue to be, in it for the long haul. I’m proud of the progress I’ve made and the accomplishments that I’ve achieved (all of which I was told I wouldn’t do) but I would be lying if I said that my journey has been anything but arduous, full of challenges, breakthroughs, moments of immense frustration and moments of unparalleled hopefulness.

Because of the immensity of my goal, I have found focus and comfort in setting smaller, more attainable objectives and working towards those. The best example of this was the months and months of hard work I did that was dedicated to the moment I would be able to finally stand up on my own and ask Brita to marry me.

I’ve previously shared my newfound love of being in the water and swimming largely because of the freedom I feel from the weightlessness and the relief of pain from not having to deal with gravity and its impact on my body. Last summer, I set a goal to complete a 2.4 mile open water swim and I thoroughly enjoyed the process of training as well as actually completing the swim. But I remember that the moment it was over, I was already looking ahead to the next challenge. A couple months later, during a trip to visit friends, Brita and I swam in Lake Tahoe’s smaller, slightly warmer, less sexy and well-known but still gorgeous neighbor: Donner Lake.

Since I was seeking a new swimming challenge and wasn’t quite able to find an existing event that could serve the purpose (the swims weren’t long enough or they were relays with too much distance or the water temperature and other conditions were too challenging), I decided I would make up my own event and the answer couldn’t be more obvious.

Though I toyed with the idea for quite some time, it’s only recently that I finally put the pieces together and decided that my new challenge would be to circumnavigate the perimeter of Donner Lake, which by my best Google Earth estimates, comes out to 5.8 miles.

Yes it’s more than double what I did last summer, yes it will be at 6000 feet of altitude, and yes with my steady but very slow pace of swimming it will likely take me the equivalent of a cross-country flight, but I couldn’t be more excited about it. I want the swim to be about so much more than just my personal commitment to work towards this goal (I’m going to do that no matter what) so I’m inviting friends and others to join me in this endeavor. Whether swimming is completely new or a familiar activity, working towards a personal goal, whatever that may be, is what I want to encourage.

The non-profit that a few friends and I recently established (more to come on that on a future post) will be organizing the swim and raising money for our mission. If you’re interested in participating, you can join as a swimmer or non-swimmer (there are options to kayak, paddleboard, or just simply hang out, cheer and support), just comment on the post or contact me individually.

Because it’s in Donner Lake, near Donner Pass and everything else named Donner, the swim is the Donner Party Swim. For those of you not from Northern California who didn’t hear the story of the Donner Party pioneers (yes there was cannibalism involved) a thousand times as a child, educate yourselves here.

Before my injury, with a fully functional body, I could barely swim a quarter of a mile in the pool before gasping for air and calling it quits. Two years ago, I could swim no more than a couple hundred meters but only with a snorkel and many rest breaks. A year ago, I thought it would be nearly impossible to swim 2.4 miles in open water. Now, it’s time to work towards something much bigger and more challenging, to prove that I can do it, but also to remind myself that this will be just another step in my larger journey of recovery and reaching my ultimate goal.

Walking on water… I mean… IN water

Finally a new blog post! Yes it has been a while and I’ve received more than a little flak for not posting a recent update so here I am.

Last summer I wrote a post about my newfound love for swimming and for being in the water. At the time, I had trained for, and completed, a 2.4 mile open water swim and since then my love for being in the water has not only remained steady but increased.

At the end of most of my swims, I usually spend the last few minutes standing, doing squats against the pool wall, bobbing up and down and playing around, and just trying to move my body in an upright position and challenge myself in ways that I can’t do on land, for fear of gravity getting the better of me and tumbling into the ground. In the past, I would try to walk in the pool by leaning my hands on Brita’s shoulders for balance (and in turn challenging her balance with my sloppy grabbing/leaning/pushing/pulling motions) and she would step my legs for me with her hands and keep me upright with her knees as I tried –and likely didn’t succeed– to look somewhat competent. Not too long ago, one day when Brita was out of the pool and I was lingering in the water, soaking up (pun intended) every last bit of the floaty, weightless, aqua goodness, I tried to give walking a go by myself.

In chest high water, I was able to keep my balance by thrashing my arms and pushing the water around as I would lean forward, back, or to the sides. Then I could concentrate on trying to take steps, which is still the missing piece of my walking abilities on land. It was ugly, and I was probably straining way too many muscles and contorting my body like a slow motion Frankenstein, but I was able to take a few very labored steps. While this has improved a bit over the last few months, it’s hard to work at it consistently because of the logistics of the pools I’m in, the varying depths of the lanes, fatigue, etc.

Recently, I spent a few days at Neuroworx, a state of the art non-profit neurological rehab center that I went to shortly in 2013, not too long after my injury (my posts here and here) and had the great fortune of using their incredible therapy pool. With parallel bars in the water, underwater cameras at every angle, and a floor that raises up and down and functions as a treadmill, this thing is BADASS. After doing some core exercises, we decided to turn on the treadmill at a very slow speed and see how I could walk.

Now let me take a moment to be clear and avoid any misleading or false hope.

I am still cranking and pulling with my back more than I ever should. Pulling my legs forward is extremely challenging and takes all of my effort. I’m holding onto parallel bars for balance. I’m supported by the water and the lack of gravity makes it a lot easier to move. At this time, I am NOT able to replicate this on land. You can’t see my upper body but my walk is still ugly and slightly less, but still undoubtedly Frankenstein-esque.

So with all of that said, here’s my water walking.

Not great, but not bad right? I’m pulling one leg through and maintaining support on the other leg, I’m not falling over (mostly thanks to the parallel bars) and once I get started and in the rhythm, I can keep this going for a couple of minutes.

Everyone always asks me what this feels like, does it feel like I’m walking and the answer is simple: I don’t know. It doesn’t feel completely natural or controlled but it’s also not a random, disconnected, spastic movement. I know that I’m compensating my weaknesses by walking in a very unconventional way, but at the end of the day, I’m taking steps. I’m propelling myself on my own two feet. And it still feels pretty damn good.

Dimming the muscle switch

With the arrival of 2016, and with it the continued realization that time passes faster and faster every year, it makes me reflect back on the goals and objectives that I set for my recovery last year, to the unfinished goals that I will carry over into the new year and to new objectives I will set for my continued path of spinal cord injury recovery.

I can confidently say that my body has changed significantly in the past year. In the last couple of weeks especially, I’ve been doing a lot more work in standing positions and my trainer has challenged me and in turn pushed the limits of the Pilates equipment (which have probably never been used for some of the exercises we do…) by coming up with novel ways of strengthening my current abilities and building off of those to challenge my body to find the next steps of function.

As a result, my endurance to stay standing – while much less than I would like – is noticeably better than it was even a month or so ago. I’ll share a video below to show one of the recent exercises I’ve been working on and one that went from needing a lot of assistance a couple of months ago, to now being able to control everything relatively smoothly on my own.

So where do I go from here?

One of my main goals for 2016 will be what I’m calling “dimming the switch.” I use the analogy of a light switch because it applies quite well to what I’m referring to.

Right now, the engagement that I get to the muscles of my lower body generally works like a light switch, meaning when I turn a certain set of muscles on or perform a particular movement, those muscles are on 100%, working hard, contracting strongly. When I decide to change positions or turn off, everything just kinda releases all at once. So I’m stuck with a light switch; on or off; 0 or 100%, with not much control of the in between.

For example, in the video above, if I were to try to bend my knees or do that same exercise in a light squat (which I must admit would be rather challenging for anyone), I would crumple to the ground, unable to dim that switch and maintain control of my stance. I either have to stay with legs locked straight or I get nothing at all.

You see where I’m going with this right?

The dimmer switch is essential to any kind of functional movement that I’m working to regain. I have to be able to control some muscles at 50 or 70% and not just 100%. Not only that, but I also have to relearn and retrain myself on how to differentiate one side of the body from the other. In other words, if I’m going to be able to successfully take steps, my left leg must be able to bear weight and be at 80 or 90 or 100% contraction while the right leg is lifted in the air and taking a step. It utterly blows my mind to think about how a healthy body and spinal cord can so naturally manage a movement pattern like walking that may seem simple, but is actually startlingly complex as it’s a consistent dimming up and down of different muscles at all times.

Like so much of what I have understood since my injury, our bodies and our movements are incredible and should not be taken for granted. It’s easy to underestimate just how much is involved with a seemingly simple set of movements, until you’re faced with an entirely different body that doesn’t react the same way.

So I will dedicate 2016 to finding that dimmer switch and being able to control my lower body movements more fluidly and effortlessly.

Grateful for more than the gobble gobble

I started writing this blog just over three years ago today, on the eve of this all-encompassing American holiday, and now I look back to the third blog post I wrote, just before Thanksgiving where I listed the reasons why I was thankful despite the horrific nature of my situation and being only four months out from my spinal cord injury. Fortunately, every reason for gratitude I listed on that day still applies to my life today, with some notable additions of course, and it makes for a good opportunity for me to recognize one particular thing for which I’m recently very grateful.

I’ve shared my experiences at length about the unique therapy I’ve done in Maui and its incredible contribution to my recovery but one of the biggest challenges I always had after coming back home from Maui was the struggle to find ways to continue doing that Pilates-based therapy. I always felt like I would make these huge gains in Maui, only to return and have that momentum of improvement stall. Luckily, that isn’t an issue anymore.

Absolute Center is a busy, successful and well-regarded Pilates studio a short drive from where I live and in recent months, it has become my primary place for rehab and wellness. When I met the owners of the studio, I don’t think any of us expected our encounter to lead to the establishment of a legitimate program geared towards people with spinal cord injuries completely different from their usual offerings, but that’s what has happened. There are scores of Pilates studios all around the country and the world but it took the curiosity, progressiveness, and forward thinking of the studio owners to recognize that there was an opportunity to provide this population with a viable option for this kind of Pilates based therapy.

My last few months of training and being able to continue working with the same principles and techniques that I learned in Maui have been invaluable for my recovery. I’ve seen greater gains in a short amount of time by virtue of being able to consistently train in a supportive environment and amongst talented and knowledgable people who are committed to help me reach my short and long-term goals. Additionally, a number of other people with spinal cord injuries have been training there too and as a result, alternative and creative approaches to spinal cord injury recovery are being explored and pursued.

I am grateful for meeting these people and having the opportunity to maximize my recovery efforts and I’m excited see how a more persistent commitment to this therapy will show itself with the improvements in my body by the time I go back to Maui again.

While I must admit that I don’t love turkey or a lot of typical Thanksgiving fare (which is why we make a somewhat less traditional feast!), what I do love about this holiday is the notion of taking a moment to be grateful. Happy Thanksgiving to everyone.

 

My TEDx talk

There’s no easy way for me to share this and not feel awkward about self-promotion so I’ll just come out with it.

Last month, I did a TEDx talk in front of an amazing audience of over 650 people. I was invited to share the story of my recovery thus far and how I’ve handled being dealt the most catastrophic hand I could ever imagine.

Quick recap on how I got here:

Last year, when I wrote my blog post about standing up and asking Brita to marry me, a random friend reached out and asked me to share my story at a technology conference he was organizing. While I’d always felt comfortable talking to people and presenting in front of small audiences, I had never done anything like that event, in front of 300+ CEO’s, venture capitalists, and business leaders. He gave me very little guidance and I still to this day have zero idea how or why he knew that I might do a half-decent job, but he trusted me fully and told me to give it a shot. So I got up there, told my story and then made way for will.i.am and his fireside chat (and yes it was deliciously entertaining to see a hipstered out rapper talk to a roomful of Silicon Valley investors and entrepreneurs).

My talk went over quite well and since then, I’ve been invited to do a number of speaking engagements including large and small conferences, corporate workshops and meetings, business events, and even a roomful of medical students who were on their way to being the doctors, prognosticators and hope providers (or deprivers) of tomorrow.

Although I was hesitant at first about sharing my story, mostly because I haven’t yet achieved my ultimate goal of getting back on my feet and didn’t feel quite comfortable sharing a story of a partially achieved objective, I got over that and realized that I really enjoy speaking to people. As a result, an incredibly generous and selfless friend who I’ve mentioned on this blog anonymously and who hates self-promotion as much as I do but who I will now shamelessly reveal because he’s an overly humble yet completely badass published author, conference organizer and entrepreneur, told the organizers of this particular TEDx event about me. The rest is history.

So here’s the video. Feel free to share as much as you’d like. If there’s one time I’d be ok to see social media saturated with something I did, it’s now. And yes I am interested in other speaking opportunities so please contact me if you have other ideas.

The proof and the pudding for Visualization

A few days ago, news came out of a research study from UC Irvine of a man using his thoughts to move his legs and walk by circumventing his damaged spinal cord. He was five years post Spinal Cord Injury, with no motor or sensory function below his level of injury and was able to train his brain and body to relearn how to walk. The process didn’t involve an implant or surgery but instead used an electroencephalogram (EEG) system that sent his brain signals directly to electrodes attached to his legs.

Although he was the only subject in the study, thus proving that the results must be replicated many times for them to have a more significant impact, this is still an incredibly exciting breakthrough. I recently wrote a post about my thoughts on cures for SCI and while I have no doubt that scientists will continue to explore this method and improve upon it, for me the most interesting element of the study, and the most relevant, was one of the more subtle points.

“He first underwent mental training to reactivate the brain areas responsible for controlling movements involved in walking. The researchers placed an EEG cap on his head to read his brainwaves, and he trained to control an avatar in a virtual reality setting.” (CBS News)

In other words, he had to visualize moving his legs and walking in order to establish that pattern of brain signals and then, just like strengthening a muscle by lifting weights or exercising, he had to continuously exercise that visualization pattern and strengthen the connection between the thought and the movement he wanted to achieve.

I’ve written at length about my frustrations with the inconsistency and shortcomings of the medical establishment when it comes to Spinal Cord Injury, but one thing that I did consistently hear from almost every medical practitioner was the importance of visualization as an essential element in one’s recovery. Everyone said this to me. “If you can’t move that part of your body, then think about it. Try to move it as much as you can. Keep sending those signals.”

As a result, so much of my recovery efforts are based on combining my intent and effort to send the signal of movement from my brain to a part of my body and then achieving that movement either with the support of equipment or a person and most often both. Even when I swim, I’ve established the habit of constantly thinking about kicking my legs and propelling myself forward using my lower body, even if I have difficulty doing so on my own.

But how do I know if my efforts to visualize and send brain signals are actually accomplishing anything? Is it possible to measure visualization skills in any way?

In my belief, those breakthroughs of progress that I’ve achieved must be somewhat attributed to the  diligent effort to visualize and constantly try to tap into the mental aspect of my training as much as the physical. While it’s impossible to say that X amount of this one accomplishment is due to visualization I did on certain specific days, I think the bottom line is that the mental exercise can and does lead to physical results, as evidenced by this research.

Furthermore, neuroplasticity (the all important yet still not widely accepted concept that the brain and nervous system is not hard wired and can rewire and repair itself) gets a big boost from this research. The old school, outdated way of thinking about the neurological system would say that any damage to the system is permanent and irreparable. But if a guy can go five years after his injury, and in a manner of a few weeks visualize and retrain those parts of the brain responsible for sending signals to his lower body, and then find a way to move those muscles and walk by skipping over the damaged part of his spinal cord, then I don’t think there’s any question that neuroplasticity is real and should finally become acknowledged and taught in the medical textbooks.

I’m happy to see this story confirm the importance and success of visualization and hope that it can lead to further developments and more progressive ways of treating SCI and neurological conditions.

Another toe wiggle (finally)

If you’ve been following my recovery and reading my blog for a while, you may remember the post I wrote about waking up one morning and being able to wiggle my pinky toe with full control. This happened six months after my injury and at the time, I thought it heralded the process of most every muscle in my body slowly but consistently coming back under my full control. I was wrong…

In the two and a half years since, I have worked harder towards my recovery than anything else in my life. My day to day life was, and is still, 100% focused on recovery and on working towards my all important goal of getting back on my feet and walking. But despite all of that hard work, I didn’t regain function the way I was expecting. It was more than a little disheartening to regain full control of a body part, expect it to continue, and then tick off the days and weeks that went by without any further recovery of function. I’ve obviously made a huge amount of progress since then, which I don’t want to discount, but there was something so satisfying about regaining absolute control of any body part in my lower body that I didn’t experience since then… until now.

It seems that the pinky toe wanted a friend, that it became lonely and wanted a companion to dance along with it on my right foot. We’ve all been in that situation at a party, work event, or gathering where we don’t know anyone, where we long for companionship, where we hit the apex of desperation for someone, just anyone, to come along and give us a reprieve from our isolation. (Ok I admit that’s a little over dramatic but just humor me…).

Well the wait is over for my pinky toe.

A couple of weeks ago, I noticed something different in my right foot and when I looked down, I saw the second toe, the Co-Captain of the toes (yes that’s a Seinfeld reference, enjoy), wanting to join the movement train. Unlike the pinky though, moving the second toe was very subtle at first. I had to try really hard to make it move. But once that pathway of communication to the toe was open, all I had to do was hammer it over and over and over. And everyday after that, it became stronger to the point where now I have 95% control of it.

Ok so you may be thinking, “What is so important about a toe? How does that help with the goal of walking?” Well the answer is simple. If all of my recovery was supposed to stop after one or two years, like the doctors predicted, then the fact that I’ve regained control of any part of my lower body confirms how bogus that thinking is. More importantly, it shows that a new communication pathway has been established from my brain, that a signal that previously couldn’t get through is now able to make its way to its destination. And if that’s possible, three years after my injury, then anything is possible from here on out. New pathways can be established, new muscles can be innervated, new movements can occur and the hope of regaining more function is very much alive.

It may just be a toe but it’s a validation, however small, that everything I’m working on is leading to results, and that more recovery is going to come.