Two wild horses

Recently, more and more time in each session of my rehab has been dedicated to doing a variety of exercises in a standing position. This is following on the work I’ve done using the Neuro Kinetic Pilates method that I’ve learned in Maui and almost always using the Core Align, an amazing piece of Pilates equipment that allows me to push my limits in a standing position while remaining safe and secure and minimizing the risk of falling. (See this previous link to remember what I’m referring to)

By finding new ways to establish movement through my lower body, I’ve encountered a new challenge. I call it the shakes. Put simply, my legs start to shake… and shake… and shake… and just when I think I may be done, my legs shake more. The video below is a perfect example of what I’m talking about and it occurs after some 15-20 minutes of doing squats or lunges or any of the other exercises I’ve been doing recently to target my quads and improve my standing stability.

It took me a while to really understand what this was. At first, when I would tell some people experienced with SCI, they would shrug it off and say that it’s simply clonus and just another typical example of the cervical level injury that I suffered. Clonus is defined as “involuntary and rhythmic muscle contractions” and it is commonly seen in many people with spinal cord injuries. But, like the doctor testing your reflex by tapping your knee with a hammer, clonus is also a reflexive result and can be tested for and replicated by a practitioner. After doing these tests with me, the PT scratched her head in confusion and confirmed that I definitely didn’t have signs of clonus.

So what’s with the shakes?

As with nearly everything else in my path of recovery from SCI, I’ve had to figure it out myself.

To put it as simply as possible, until recently, the controlled movements that I had in my legs were all based on a single movement pattern. Since I was first able to start bridging and standing up independently with a walker, I’ve contracted my leg muscles using a specific pattern of engaging them and it’s gotten me really far.

But since I started doing some new standing exercises a few months ago that target completely different muscles, I’ve established a new pattern of movement and carved out a new neurological pathway. Muscles that haven’t really contracted or have only had minor contractions and been overpowered by other dominant muscles are finally being forced to contract. And since my spinal cord can’t manage the communication between my brain and my legs as effectively as possible, those muscles start freaking out and shaking like crazy. It often feels like I’m trying to stand on two wild horses hell-bent on roaming the countryside.

It takes an extraordinary amount of mental effort for me to keep working these new patterns and strengthening these new neurological connections but it’s a great sign that I’m able to gain new movement and work underutilized muscles that are being forced to step up to the plate and show their stuff.

While I get annoyed with the shaking since it forces me to slow down and struggle through the movements, I still take it as a positive thing. If establishing new neurological connections, gaining strength in previously underperforming muscles and finding new ways of movement mean that I have to deal with two wild horses shaking like crazy, then so be it.

Another anniversary

This morning I woke up a bit unsettled, a bit more tense than usual. I’ve had a heavy feeling all day so far, wondering just how crazy it is that time has passed the way it has.

It was exactly four years ago today that my life changed forever. That three decades of knowing my body in a particular way and understanding how I interact with the world got turned on its head.

In some ways it feels like very little has changed and that it was still only yesterday that I was climbing up mountaintops and biking all over town. I still dream every night that I am walking, running, playing sports (I just dreamt of playing in a competitive soccer game last night) and having access to my body as I’ve always known it. Sometimes I have more vivid dreams with more symbolism and meaning, like walking through my college campus and pushing an empty wheelchair. And I never stop thinking and visualizing of my goal to walk, of wanting so badly to move through the world at six feet tall again. None of it is distant; in fact, it all feels very familiar.

Yet in some ways it feels like four years has been eternity. Four years of waking up with some disappointment every morning, with frustration that my day will include challenges and discomfort and pain that I never thought I’d have to face, but that I have no choice but to meet those challenges head on, deal with them as best as I can and move forward.

I’m not going to lie and say that I’ve gotten used to it. I haven’t. I still don’t think I ever will and that’s fine because that will continue to motivate me. Acceptance can lead to apathy and that’s a dangerous road that I’ve never wanted to take. I know that’s not the path for everyone but it is for me. I can’t help that the fire in me still burns strong. That the frustrations of daily challenges can’t match the even stronger feelings of wanting to overcome those challenges, and wanting to reach my goals. I can’t help that four years of navigating through this very different life has not led to me wanting to throw my hands up and say that the doctors were right.

The truth is, they weren’t right. They said I’d never get to where I am now. My rehab doctor told me that instead of focusing on recovery options outside of the hospital, I should go on a cruise or a vacation with Brita and try to have fun. He told me not to worry too much about my spinal cord healing because it was unlikely that it would.  So even though where I am at this moment is not nearly as far as I want it to be after four years, I can’t help but recognize that it’s only from working my ass off and staying true to my intentions and commitment to my goal that I’ve gotten this far.

I WILL continue to fight. I WILL continue to dream. I WILL continue to have faith that improvements and changes will continue to come, and that I will reach my goals. I know so much more about healing, about healing my own body and recently, I’ve been paying  more attention to healing my mind and spirit. I have come a long way since the first days after this injury when I was struggling just to survive, when making it through a day without a disaster was a cause for celebration. And now, armed with four years of experience, knowledge, triumphs, setbacks, perspective, and a stronger and more determined spirit, I continue to move forward.

And so the journey continues…

Getting out into nature (again)

The beginning of summer has always been a period of excitement for me. The anticipation of what outdoors trips I will take and what new mountains, lakes, rivers, trails and campgrounds I will discover has been a motivating factor to do one of the things I love to do the most in life: get outside and explore nature.

But since my injury, all of this has taken a new meaning. Backpacking on remote trails and high mountain passes have had to take a backseat to my full-time schedule of recovery with the intention and hope to be able to get back out onto those trails one day. Camping weekends are harder to pull off and take more advanced planning when I don’t have the same freedom to dig up all of my gear by myself, pack up the car and hit the road, and have faith that I will work everything out somehow. Spontaneity is difficult to come by since I always need to ensure that I’m not forgetting the many things I need to get through each day, not to mention how to manage my exercise and physical challenges when I’m outside of my usual surroundings.

So far, I would say I’ve made a pretty solid attempt at getting out into nature as much as possible. I’ve gone camping numerous times and reminded myself of that magical, nostalgic smell of a nylon tent, sleeping bag and the surrounding trees. I’ve cross-country skied and made it a few miles out from the nearest parking lot or paved road. And I’ve off-roaded onto some dirt trails (with some pushing help) and challenged the integrity of the wheelchair tires. But none of that has compared to the joy of exploring nature in the water.

As part of my training for working up to a 6-mile swim in September, I’ve become more and more comfortable spending long periods of time in various bodies of water, especially lakes. On a recent trip to Minnesota, to celebrate Brita’s brother’s wedding, we had the fortune of staying at a house that was on one of the state’s 10,000 lakes (it’s not hyperbole, there really are lakes everywhere) and of course, we jumped in and swam around for over an hour each day.

IMG_2188It wasn’t just the bright, translucent, blue water and its perfect temperature (just cool enough to be refreshing but comfortable enough to stay in for a while) or the serenity of the trees and lush green surrounding the lake that I enjoyed, it was the moment of popping my head out of the water and realizing that I was IN nature. I wasn’t a passive observer of the beauty around me, I was an active participant, literally in it. And while it wasn’t as remote as it used to be when I could hike for miles in miles in the mountains, it felt just as profound.

I’m grateful for the fact that Brita has always been a swimmer and thus needs no convincing me from me to get into water. And because we are limited in what physical activities we can fully do together, not only have these swimming adventures fulfilled some of our instincts for nature, but they’ve also allowed us to have another way to spend time together and enjoy each other’s company.

So get out there and enjoy the incredible awesomeness of the outdoors and remember that there can always be new ways to connect with nature and fulfill whatever inner instinct you may have.

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.