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.

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.

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.

Stupid comments and positive outcomes

Recent conversation outside my local coffee shop. I’m sitting and chatting with my friend when a woman in her mid 40s, slightly disheveled but generally pretty normal looking, walks out of the café, stops in her tracks about ten feet away and addresses me:


Woman: Are you really in a wheelchair? Do you actually need it?

Me: Excuse me?

W: I’m just wondering if you’re actually paralyzed and if you need the chair or if you’re just using it, because…well…you know.

M: Um…do you really think I’d be in this damn wheelchair if I didn’t need to?

W: Well it’s just that you’re sitting with your legs sprawled open and you don’t look like you need to use that chair, so I’m wondering if you’re actually paralyzed.

M: Do you make it a habit of asking strangers such personal questions about their conditions?

W: Well, I know people who are actually paralyzed are usually very open about talking about these things and you just don’t look like you actually need a wheelchair. So, are you or not?

M: This conversation is over.

W: Well! I guess that answers that then, doesn’t it?!

M: You need to leave now lady.


She storms off, leaving me to wonder why she’s the one who’s agitated and exasperated.


In the time since my spinal cord injury, I have rarely, if ever, had any negative or insulting interactions with strangers in public. Initially, the fear of such an interaction terrified me. I was fearful of going anywhere in public, I was anxious about the looks I would get, the expressions of curiosity and bewilderment I would inevitably see on people’s revealing faces as they walked by me in the street, towering two feet above me.

But time and time again, I’ve been proven wrong. Ninety-eight percent of the time, I’m treated with civility, genuine greetings, and offers to hold the door open or move a chair out of the way to let me through. Of course, every single concession or accommodation that people make for me adds to my immense frustration at not yet being able to move freely on my feet, at eye level, where I want to be. Frustration aside, other than some confused, staring children who often don’t seem to know what to make of a guy in a wheelchair, I’ve become accustomed to cordiality and respect in public.

For that reason, I suppose I was due for a strange and unsettling interaction like this one.

I still hate everything about the wheelchair with the same passion and vitriol that I’ve had since day one. So naturally, I really dislike anyone noticing it or pointing something out about it. I continue to pray and hope for the day when it is a thing of the past and I won’t have to have this unwelcome companion with me at all times. That said, I’m not clueless, I realize that a society full of people who are upright and then a person who’s sitting down, rolling by is going to be noticed, but maybe because of the general progressiveness and open minded mentality of the people where I live, I don’t often have to worry about feeling too noticed for standing out, but of course this time it was different.

If the inappropriate and nosy questioning didn’t prove the nuttiness of this strange and sad woman, then my ensuing conversation with the cafe worker did. He came out, apologized for her behavior and said that she had ruffled some feathers with him as well when she purchased a pastry, ate some of it, complained about its price yet refused a refund, then continued to eat almost the entire pastry before returning to the counter and demanding a refund, which she was politely given. The point was proven: this person didn’t know how to interact with society and in the span of two minutes had angered a handful of people.

As she walked away, my friend (who has been a tremendous source of support and encouragement for me since my injury), instantly knew that I was on the verge of getting upset and deftly changed the course of my emotions. He told me that as crazy and weird as she had been, she was 100% right about one thing: I don’t look like I belong in a wheelchair. He said that he’s been noticing it for quite some time, that my overall health, confidence and increased strength make me look less and less like the vulnerable and weak person that I was not too long ago, and more and more like someone who’s about to jump out of the chair and start running down the street. He pointed out that I was sitting so unusually in the chair, scooted forward on the cushion with my feet on the ground and my legs comfortably spread apart, and the lady just didn’t know what to make of it.

I’m grateful for my friend for helping me take an awkward and potentially frustrating public interaction and treat it as a positive occurrence. In fact, within seconds of Mrs. Nuttipants’ departure, likely to annoy another self-respecting citizen or two, I had forgotten about the entire thing. I realize that had this conversation happened a year ago, I might have had a very different reaction but this time, I got the last laugh.

Standing in the Southwest

We all have sacred places, locations that have a strong link to our emotions and memories, that register some kind of greater meaning within us. One of my most sacred and favorite places in the world is the high desert plateaus and canyons of southern Utah and northern Arizona.

I first came to this region in 2005 when I was working as a trip leader for guests on biking and hiking tours and taking delight in seeing their faces when they experienced this truly special place, unlike any other in the world. It was always the same story, everyone signed up for the trip mostly because of the draw of the Grand Canyon. The other areas we would visit were usually more of an afterthought, an asterisk next to the statement of having seen one of the natural wonders of the world, or as us trip leaders would jokingly refer to it, “the biggest ditch in the world.”

The result was always the same. People usually hadn’t heard much about Bryce Canyon or Zion National Park (not to mention Red Canyon, the Kaibab plateau, Cedar Breaks and some of the other places we passed through), but once they saw all of it, they almost always admitted that the Grand Canyon was just a part of a truly spectacular area, and the other national parks would often cement their presence in their memories stronger than the big ditch.

I spent a good part of three summers in this area, visiting these parks over and over again yet I never got bored of the dramatic cliffs, canyons and geological formations. So it was only natural that when I found out that my fiancé had never been to any of these places, we decided to make a road trip out there. In order to make the long drive a little less painful, and to continue to explore our own state of California, we decided to throw in Death Valley National Park too, for good measure.

I wasn’t sure how I would react to visiting these places again after an eight year hiatus, and more importantly, now in a very different physical situation, where I wouldn’t be able to do the hikes I had done so many times or share my favorite peaks and viewpoints with Brita. What would it be like to visit my sacred place but without the physical ability to experience it as I remember? Was I setting myself up for disaster?

The answer, probably not surprisingly, was mixed. On the one hand, it was extremely difficult to be in beautiful and memorable locations yet constantly feel limited by where I couldn’t go, what I couldn’t see or relive again. On the other hand, I was able to share these places with Brita, to experience seeing them through her eyes and taking joy from that process. Not to mention that simply being in these places, with or without hiking and climbing up to the tops of the mountains, was soothing for my soul. At the end of the day, seeing the late afternoon sun shine on the massive, red, sandstone cliffs of Zion confirmed to me that I had made the right decision to come back.

For the last couple of months, I’ve been practicing standing up by myself, unassisted, in a walker and while it’s certainly not as effortless, long-lasting or smooth as I’d like it to be, it’s a measurable improvement from before. It was only natural then that throughout our road trip we would pull the walker out of the car, and I would rise to my feet and at least get a slightly higher view than from the wheelchair. While it wasn’t a replacement for the inability to go on a hike, and while I still long to climb back up to those peaks and descend into those canyons, it at least made it a tiny bit less painful and a whole lot more memorable. This sacred place remains sacred to me, and nothing that has happened to me physically can take that away from me.

Grand Canyon

Grand Canyon

Grand Canyon

Grand Canyon









Zion National Park

Zion National Park

My hips don’t lie

I’ve been back in Maui again, doing the incredible therapy that I’ve described in previous posts, and working on an entirely different set of objectives this time. I came here with a couple of ideas of where I wanted my efforts to go considering where I am physically right now. I’ll try to explain as clearly and concisely as possible, and it all begins with the hips.

Over the past few months, my exercises and efforts have involved more subtle aspects of my body development. Specifically, the stability of my hips and pelvis have been a central point of my ongoing therapy. In fact, I dramatically changed some of my exercises in recent months to eliminate detrimental compensatory patterns and to ensure that I was retraining my nervous system and muscles in the correct position, giving everything the best possible chance to succeed.

The reasons are simple: 1) Without hip stability, the rest of me is shaky and ineffective. Or put another way, how will the top floors of a four-story building be stable if the second story is swaying and shaky? [See my recent post about this to learn more] 2) Without proper hip positioning, I could be arching my back or compromising my spine which in turn could compress my spinal cord further (the last thing I need) and restrict the flow of nerve signals from my brain to my lower body. 3) It’s difficult to think about taking effective steps with my legs if the pelvis and hips are out of position or I’m trying to establish an entirely new pattern of movement that my brain, spinal cord and body aren’t accustomed to.

As a result, when I came to Maui on this trip, Alejandra and I discussed how best to move forward to achieve the next steps in my recovery. In her words, the human gait is incredibly complex. There are a variety of different muscles involved in different ways at different times in order to perform different objectives. While there are ways to overcome or compensate for some of these muscles being weak, there are others that just cannot be ignored or undeveloped, if one is to take effective steps and establish a sustainable walking pattern.

As a reminder to anyone who’s read my descriptions of Alejandra’s method and approach, muscles aren’t treated individually but as a system of muscle lines connected by the fascia, connective tissue that covers and connects every part of the body to the rest. But to make it easier to understand, there are two primary muscles that I’m working during this trip that are both essential to retraining myself to learn to walk.

The first is the medial gluteus on the side of the butt. I never realized how important this relatively small muscle was until now but it is crucial for the gait pattern. When you shift your weight to one leg in preparation to take a step, without a functioning medial glute, your opposite hip (the one taking the step) would drop down, throwing off your balance, straining your back and spine and making it harder to swing that leg through and take a step.

The second muscle is the psoas, which I went into a bit more in my last post so I’ll spare most of the details here. Needless to say that the psoas is the key component in actually flexing the hip off the ground and allowing you to swing it forward. Most of everything we’ve been doing in Maui has revolved around these two muscles, and how they interact with each other.

This video is a good example of both of these muscles working together. As I pull my leg forward, I’m working my psoas and as I extend back I’m using my medial glute.

In this second video, I’m standing on the Core Align, stabilizing my right leg through the medial glute (as well as quads and other muscles), which allows me to use the opposite medial glute to engage and kick my leg out to the side, all the while trying to keep my hips and pelvis aligned.

I’m not trying to downplay all of the other muscles involved in walking, but these two muscles, and the work I’ve been doing with them emphasize the importance of pelvic stability. As Shakira says, “my hips don’t lie.”