Aquaman

Swimming never came naturally to me. Aside from summer camp and pool parties as a child, I spent very little time in the water and always preferred the comraderie and dynamics of playing team sports instead of jumping into a lane and competing individually. When I forced myself to start swimming in my late twenties in order to train for triathlons, it was a sad sight. Although my fitness in running and biking was strong, I could barely last a few minutes in the pool before I was gasping for air. The first few times I begrudgingly got into the olympic sized pool at my graduate school gym, I had to embarrassingly stop and rest after each 25 meter length. 

Almost a year after my injury, I got back into a swimming pool for the first time since those days of triathlon training and I immediately felt comfortable and happy. Although I was in a tiny therapy pool, about twice the size of a hot tub, heated to 93 degrees (most people with Spinal Cord Injuries cannot effectively regulate body temperature so a normal pool is usually too cold), and with two therapists in the water with me, I felt more free than I had at any moment since waking up in a hospital bed in the ICU. 

I didn’t just like the feeling of being weightless and uninhibited by gravity, I adored it. I craved it. And I wanted more. 

Soon after that, I decided that the water therapy with the PT’s was too restrictive and I didn’t want to be confined to a small pool and strict 50 minute time limits. I found a public pool near my house with a lift to get in and out of the water, and I was off. Brita, who had grown up swimming her whole life, was thrilled to be back in the water consistently and we were both overjoyed at the opportunity to share an activity together that could replace the hikes and bike rides we would inevitably be doing otherwise. 

In the beginning, I had to swim in place, on my back, with Brita holding my ankles. Five to ten minutes was more than enough. Thanks to a friend’s suggestion, I bought a snorkel and tried to swim face down but I was too weak to even get my arms out of the water and take a stroke, yet I tried anyways. As I’ve explained here on my blog so many times before, physical progress with anything after a Spinal Cord Injury is painfully slow and so much more tedious and frustrating than able-bodied exercise or training, but I kept at it. Not only because I felt like it was an attainable goal to work towards, but because I was addicted to being in the water, of taking the pressure off my butt, of escaping the hideous reality of sitting in a chair so damn much. 

One day this past December, almost a year and a half after I first got into a pool, I threw off the snorkel and decided that come hell or highwater, I was going to force myself to get my head out of the water, breathe normally and swim freestyle. Serendipitously enough, only two days later, I stumbled upon an open water swim race in June and immediately knew my destiny. Without hesitation, I signed up for the longest option: 2.4 miles, the same distance of an Ironman triathlon. 

This past weekend, with a bit of apprehension but a full head of steam, I got in the lake and completed the swim in just under two hours, a full thirty minutes faster than I was expecting. 
  

While relearning how to walk remains my ultimate goal and primary focus in everything I do, completing this swim has taught me the importance of setting and reaching objectives of varying difficulty. I’ve learned that achieving this goal of swimming a distance that I never expected possible allows me to be even stronger and more determined as I remain focused on my longer, more difficult goal to get back on my feet.

Shortly after my swim, a friend who heard about it congratulated me and said, “hey you’re Aquaman!” I nodded in agreement, knowing that being Aquaman has renewed my faith that no matter how long it takes, I will soon be “Walking Man” again. 

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

Reluctant self-promotion (sigh…)

I’m not good at self-promotion. I’ve always believed that a surplus of humility is more admirable than a just a splash of arrogance or self-obsession. The entire reason I started writing this blog was to have a way of sharing the story of my recovery without having to inundate my community with personal emails or unrelenting status updates that could get lost in the shuffles of baby photos, restaurant check-ins, flight details and snapshots of meals (seemingly the majority of my Facebook newsfeed these days). Call me old school or what you will…

Well, at the behest of my closest family and friends, I’d like to (still reluctantly) share some recent developments and accomplishments .

A few months ago, a friend invited me to speak to a large conference of Silicon Valley Venture Capitalists, investors, and entrepreneurs. Not knowing exactly what I could offer or say, I decided to craft a story about my injury, my journey on the path to recovery thus far, and my marriage proposal standing up on my own two feet.

While I had always felt comfortable speaking in front of a group in a variety of contexts, having presented in professional settings many times and at social events like fundraisers with my friends and community, I had never done a TED style talk in front of 300 paying attendees, which was the setting of this event. I spent a great deal of time writing my speech, making sure to abide by the imposed time limits and keep it engaging, clear and concise. When it came time to remember the key points of my presentation, I was at a loss.

My friend, a recently published author, conference organizer, and master of integrating comedy into business who hates self-promotion as much as I do which is why I am shamelessly calling him out, told me about the Memory Palace: a millennia-old technique using visual imagery to remember long presentations, recitations, or speeches. “I promise you it will work,” he said. With only three days before my presentation, I was a bit skeptical but I trusted him and decided to give it a shot, especially since I really had no better option on the table.

I drew out my own little memory palace, abandoned any other methods for remembering my talk and off I went. My presentation went quite well, and not only did I remember everything I wanted to, I thoroughly enjoyed the experience of being onstage and sharing my story with a roomful of people.

Since then, I’ve been invited to give more speaking engagements and have continued to refine my skills each time, all while still having lots of fun doing so. Following one of my recent talks, I met a very interesting guy who after a long career in broadcasting became a speaking coach and is now the premier presentation coach in Silicon Valley. Unbeknownst to me, he is also a regular contributor to Forbes magazine and decided to write a story about the memory palace and my use of it in Forbes. I’m including the link here:

http://www.forbes.com/sites/jerryweissman/2015/04/20/how-to-remember-what-to-say-and-four-ways-to-make-it-stick/

I’m enjoying these speaking opportunities greatly especially when I find out that people are impacted by my story and able to take something away from me and apply it in their world. In a struggle as big as mine, to recover from this traumatic injury and its devastating effects, knowing that I’ve positively impacted just one person is extremely gratifying and fulfilling and I’d like to keep that going. I’m open to other opportunities so if any of you have any thoughts, suggestions or ideas, don’t be a stranger and let me know.

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.”

Bow down to the all mighty psoas

Let’s do an exercise. Identify the following muscles in your body, move them, think about how they feel when they’re functioning well compared to the feeling when they’re tight, impaired or injured. Ready? Here we go.

Bicep. No brainer. Do your best body builder pose. Got it?

Calf. Raise up on your toes and feel it contract. Put on some high heels. Maybe it bulges out of the back of your leg, maybe not. Ok, moving on.

Abs. Where’s that six pack? The goal of many a workout. Situps. Lots and lots of situps.

Ok ready for the next one?

Psoas. 

Huh?? What is it? How do you even say that?

Psoas. C’mon, flex it. Now relax it. Stretch it.

But how do you feel it? What does it do? And seriously, how do you pronounce that?

Psoas muscle

Psoas muscle

For many of us, the psoas is a mystery muscle. Most people (yoga addicts, pilates gurus, and fitness fiends aside) have no idea what it is or what it does. From what I’ve learned, it’s only been in the last couple of decades that it’s even reached modest levels of significance.

For me, the connection to my psoas was badly damaged during my injury. Although I’ve regained decent connections to my glutes, quads and hamstrings, and gradually but consistently strengthened my abdominals and core muscles, my ability to use my psoas has eluded me.

Why does this matter? How important can the psoas be?

Extremely important, it turns out.

The psoas is the only muscle that connects the spine to the lower body. It originates in the low back, branching out from the 12th thoracic and all five lumbar vertebrae, sloping down underneath all of the abdominal core muscles, through the pelvis and attaching to the top of the thigh bone. It’s responsible for many things including but not limited to trunk stability, low back flexibility, picking up your leg to take a step, supporting organ function and even breathing. Functionally, one of the reasons we have evolved to standing from being on all fours is the emergence and importance of the psoas.

I’ve known for some time now that strengthening my connection to my psoas is maybe the most essential next step in my recovery, since with even moderate engagement, I would be able to lift my leg and swing it through to take a step.

What I didn’t realize however, was just how significant this muscle is not only functionally and physically but emotionally. As one of the deepest muscles in the body, and as a literal bridge from the trunk and abdomen to the legs and lower body, its importance can’t be understated. Additionally, the psoas is connected (via fascia and connective tissue) to the diaphragm, which is responsible for breathing.

So a quick summary: we’re talking about a single muscle that’s largely involved in walking, keeping your entire trunk and lower spine stable, keeping you alive (by allowing you to breathe), and helping your organs work effectively.

It should come as no surprise then that as soon as I started aggressively targeting and working this muscle in the last week, all kinds of things got stirred up within me. Emotions were whirling at me from nowhere, deep fears were conjured up, and everything within me felt kinda topsy turvy.

Although I had previously heard of the emotional importance of the psoas in particular and the core as a whole (some spiritual practices believe that your soul resides deep in your belly), I honestly didn’t really buy it. Now I admit I was wrong and fully succumb to the power and influence of the psoas.

So be nice to your psoas, stretch it and pay attention to it, cause chances are you have no idea how important it is.

A repetition is an event

“Remember Ar-aaaash, make every repetition a separate event.”

These were the words, expressed in his slow, charming Alabama drawl, of one of my trainers a while back during a rather challenging exercise. He was a corky guy, eccentric yet affable, and I probably only worked with him a handful of times, but he had an eclectic knowledge of the body and liked to share his experience which was largely based on his years as a professional body builder.

He said that when it comes to many repetitive exercises, most people think only about completing the desired number of repetitions. Instead of that approach, he suggested that it’s not important whether you’re doing six, ten, or twenty repetitions but that you shift the focus from the completion of the entire set to an intense concentration on each repetition as its own end goal.

Clearly, the idea of “making each repetition count” wasn’t a new one at all, but the way he expressed it, his suggestion to think of each as an “event,” resonated with me.

The reason I’m thinking, and writing, about this now is that I’ve reached a point now in my rehabilitation where this advice is especially useful. In the last couple of months, much of what I’m working on has been extremely specific, focused and calculated exercises targeting small muscles and newly established and still weak neurological connections. These aren’t movements I can just complete unconsciously or with minimal attention. Now, I have to concentrate more than ever to turn on certain muscles, turn off other muscles that want to take over and dominate the movement and give every ounce of mental energy I have to try to strengthen a dormant or underutilized neurological connection.

After all this time, it’s still really hard for me to describe what it feels like to deal with a damaged neurological system.

It’s not like anything I ever experienced before my accident. It’s nothing like being on a long run or bike ride and battling complete exhaustion to fight through to the end. It’s not like being in a weight room and challenging a previous feat by adding a heavier weight, gritting your teeth and muscling through the movement. Nor is it like getting into a challenging yoga pose and trying to contort your body into a pretzel-shaped position.

I have to concentrate so much more on each specific aspect of my movement because I’m not only engaging the muscles that I do have control of, but I’m trying to reestablish those damaged connections. That’s why treating each repetition as a separate event is such great advice. It slows the entire process down, demands tremendous brainpower and forces me to prepare, complete and analyze each repetition with focus and determination. I also like that it can be applied to any repetitive movement or practice, not just physical exercise and it allows me not to take any practice for granted. Slowing down and treating each repetition as its own event can only benefit my continued recovery.

On cures

There have been some innovative and very high profile developments in the last few months when it comes to treatments for Spinal Cord Injury (SCI). Scientists, researchers, and advocates have demonstrated that creative approaches can lead to exciting and potentially groundbreaking results in treating this oh so complex injury, which no one seems to really, truly understand.

I’m often asked how excited I am about these breakthroughs and what they could mean to my own recovery and although my usual, quick answer is, “Yeah, it’s pretty cool. Lots of interesting things happening these days,” I figured I’d use this blog post to expand and clarify my true feelings.

If you have no idea what I’m talking about, I’ll quickly outline and link to the three major developments that have come out just this year.

1) Epidural Stimulation – By implanting a small device over the protective coating of the spinal cord, and sending varying electrical currents to activate nerve circuits, four initial participants (all having suffered severe SCI’s) were able to achieve some motor control in their lower body as well as regain some other essential bodily functions.

2) Olfactory Stem Cell Implants – Scientists in Poland and the UK removed a man’s olfactory ensheathing cells (specialist cells from his nose that form part of the sense of smell), grew them and then injected them into his spinal cord to repair the damaged nerve fibers. Six months after surgery and with hundreds of hours of exercise and therapy, he slowly regained the ability to walk with braces.

3) Proteoglycan Drug – A neuroscience professor in the Ohio developed a drug that releases nerve fibers that have become trapped in scar tissue after a spinal cord injury, thus bridging the damaged cord and restoring some function. The study was conducted on rats but they’re quickly planning on trying it on humans.

Now that we’re all caught up and on the same page, I’ll explain my thoughts on these developments starting with the big positives and reasons I’m excited, but then also sharing   why I’m cautious and skeptical.

First of all, I’m thrilled that more people are paying enough attention to this injury to come up with long-term projects to address it. A scientist behind the second story I mentioned above was quoted as saying that this development was “more impressive than man walking on the moon”. I couldn’t agree more.

Secondly, the fact that these three developments all used different methods gets me excited. If they were all stories about stem cells or a medicine of some kind, I would be more skeptical of having all the eggs in one basket. Then, if something negative or ineffective came out about that one approach, the whole thing could come crumbling down. Three different methods means that the damage to the spinal cord is being treated with three individual approaches that each have their advantages and shortcomings, but they’re all leading to results, which is incredible.

On a similar note, the diversity of approaches means that there could be a potential to combine solutions in the future. Maybe with some people the stem cell treatment is less effective but the Proteoglycan drug picks up the slack. Maybe none of the treatments on their own lead to dramatic improvements, but in combination with each other (and whatever new technologies arise) a person can bounce back nearly 100%! How amazing would that be??!

My final reason for excitement is because this topic is, for the lack of a better term, sexy. Curing paralysis is a BIG DEAL. Getting people out of wheelchairs and back on their feet is truly earth-shattering. As someone who would give ANYTHING to regain function the way I had it before my injury, I can honestly say that no other medical breakthrough gets me as fired up as this. I’m obviously biased, but I embrace it.

Now for my reasons for caution:

The time frame for any of these treatments to reach the masses is loooong. The first study was conducted on four people. The second, on one. The third was on rats. I know technology moves at a frighteningly and often surprisingly fast pace these days, but even by the most optimistic estimates, these treatments are a few years away from being available to the millions of people worldwide who would benefit from them.

The financial costs, both for developing these treatments and for receiving them in the future, are huge. As I mentioned above, curing paralysis is truly groundbreaking news, but unfortunately, there hasn’t been nearly enough investment in finding ways to do this. The reality is that SCI doesn’t affect as many people as cancer or diabetes or AIDS and while I wish I could say that it’s not a numbers game, everything I’ve read proves that it absolutely is a numbers game. When the Christopher Reeve Center (with millions of dollars of its own, which has been the dominant driving force in treating SCI) has to launch a big PR campaign (see the epidural stimulation link above) to raise funds in order to continue research, it shows just how underfunded and under-recognized treating SCI is.

On top of that, we have to assume that at least initially, any potential cure will likely have a high financial cost to the user, which will automatically limit the ubiquity of the treatment. At least in the US, where medical insurance is always trying to find ways NOT to pay for anything, I’m not hopeful that insurance companies would be on the cutting edge of promoting and paying for a splashy yet expensive cure, even for an issue as sexy and exciting as this one.

I’m not trying to be a Debbie downer about all of this, I truly am thrilled to see what the future holds, but I’m a pragmatist and realist at heart. The future is very exciting, but for someone like me, who suffers through day after day of frustration at not a fully functional body, I don’t have tons of patience to just look forward to the future. I want to do something now. I don’t plan on sitting around and waiting for someone else to solve my problem and I’m way too Type A and motivated to stand by and accept complacency or the status quo. For that reason, none of these developments changes a thing in my day to day routine. I’m still going to work as hard as I have been to recover through my own hard work and will.

The one thing that all of these scientific developments prove to me more than anything else, is that the existing paradigm and approach for treating SCI is outdated and just plain wrong. These ideas show that the antiquated yet predominant way of thinking, of taking away hope from someone, of telling them they’ll “never do this or that again” has to change. It was only a few years ago when no one in the medical community believed in neuroplasticity, or the ability for the brain or nervous system to repair or change itself. Now people are changing their minds faster than ever and accepting that as arrogant and all-knowing as we human beings think we are, we don’t always know the answers. That way we remain open to solutions as they come, and I’m fully confident that in treating SCI, the solutions will indeed come…