Something to look forward to

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

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

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

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

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

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

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

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

The SCI Survivor Survey

What does it mean to survive a Spinal Cord Injury (SCI)? What systems are in place to assist and support SCI survivors days, months and even years after their injuries? How do SCI survivors deal with the many life-changing challenges they face following this injury? What are those challenges and, most importantly, what can be done to address them in order to help and improve the lives of those of us who have dealt with this injury?

All of these, and many more, are the questions that the SCI Survivor Survey seeks to explore.

A little background: After my own frustrating experience with the availability (or lack thereof) of resources, support systems and options for recovery in the initial weeks and months following my accident, I decided that at some point in the future, I would want to do something to help other SCI survivors. When I heard the experiences of others, I was simultaneously horrified – I couldn’t believe how consistently various people in the medical system were discouraging and reluctant to provide hope to these people and their families – and relieved – because I learned that I wasn’t the only one out there facing these frustrations and challenges.

Recently, a couple friends and I started discussing what the biggest challenges are for SCI survivors and brainstorming the most helpful solutions. They knew my story – after all, they had been there to support me from the beginning – and I had a sense of what those challenges were based on the anecdotes I’d heard from others. But we decided that before we could explore the idea further, and in order to have a more accurate understanding of the most beneficial potential solutions, we wanted to hear from more SCI survivors. Thus, the SCI Survivor Survey was born.

Our goal now is to get as many responses as possible from anyone who has suffered a Spinal Cord Injury. The survey is purely informational and completely anonymous. All questions are optional and the responses we get will only be used to shape the direction of our efforts and guide our primary objective: to help as many SCI survivors as we can.

So in case I haven’t made it clear yet, I’m asking for your help! If you are an SCI survivor, please fill it out yourself and share it with as many other SCI survivors as you know. Otherwise, please forward, email, link, send, snail mail, tweet, carrier pigeon, make smoke signals, use morse code, talk through tin cans, and share the following link with someone has dealt with SCI. I’m grateful in advance for your help and promise to keep you updated on the progress of our efforts.

SURVEY LINK: http://bit.ly/1hf7TcC

Making Magic in Maui (continued)

Following up on my last post, I want to provide a bit more info and specifics on the rehab I did in Maui with Alejandra.

In my last post, I mentioned the emphasis on fascia lines and I want to expand on this a bit more. From what I have encountered, the conventional approach to muscles, ligaments and tendons is to think of them separately, evaluate the function of each specific part and to target that muscle (or one or two surrounding muscles) and strengthen, stretch, or stabilize that area in order to achieve the goal of improving it. For example, your biceps muscle in your arm performs a specific function, namely, to curl your forearm up towards your shoulder. Simple enough. But what about all of those other muscles that connect to your biceps? Or the muscles that connect to the muscles that connect to the biceps? How is it that some people may feel pain in their right shoulder which stems from an aggravation in the left knee?

Alejandra – and the growing number of practitioners who are incorporating the theories of fascia lines and the interconnectivity of muscles and fascia into their practice – approaches the body differently, especially when it comes to a Spinal Cord Injury and the damaged neural connections throughout the body.

On the very first day, Alejandra immediately recognized what abilities I DID have and what muscles I already had under control. She quickly assessed that if I engaged the parts of the body that I could control, then I could also engage connected muscles, nerves, and fascia and establish new neural connections. And that’s exactly what happened.

Over the course of just two weeks (which in a very slow SCI recovery world is like lightning speed), I was able to establish new connections, primarily with my abs and core. That means that I can now achieve a strong contraction of my abdominal muscles, by virtue of engaging the muscles in my lattisimus dorsi and targeting the fascia lines that run from the base of my skull, down my neck and upper back, wrap around my abs and down into my hips, thighs, and legs. I can’t overstate just how remarkable this is!

In this approach, the belief is that there are more neural connections that run through the fascia connecting our muscles than the muscles themselves. By acknowledging the potential power of Neuroplasticity (a concept I’ve discussed before, which is essential to my recovery), I am rewiring those damaged neural connections and finding new ways to connect signals from my brain to parts of my body that I previously could not move.

I realize this is a bit technical and might be hard to conceptualize for many readers, but I urge you to keep an open mind. It’s astounding what I was able to accomplish in such a short amount of time, and the progress I’ve continued to make because of the exercises I did with Alejandra. I’m including a couple more videos below.

In the following two videos, I’m lying on my side, with good spine alignment (something Alejandra emphasizes frequently) and the movements are both in a horizontal plane, that is, they’re not going with or against gravity which allows me to feel a better connection with my legs. In both instances, although the person is doing the movement for me, my leg would react, the muscles would contract and I was able to feel a great connection to my glutes, quads and legs.

In this last video, my spine is again in good alignment as the ball and the roller behind me are prompting me to sit straight, I’m using my arms to stabilize my core and the result is a fantastic connection to my legs that are doing this fast and fluid movement. This was a great exercise.

I’ve tried my best to highlight the unique nature of the work I did in Maui and show how this has helped me. It’s tough to put it all into words or images but hopefully I’ve provided a sense of why I found this therapy so beneficial.

Making magic in Maui

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

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

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

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

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

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

Learning how to rest

Sometimes, you just need a break. Sounds simple enough doesn’t it? Well, this hasn’t been an easy lesson for me to learn. As I’ve admitted on my blog many times before, I tend to be of the mind frame that more activity is always better. More exercise, more repetitions, more movement, more more more. I’ve never slept much and honestly never had much of an appreciation for sleep partially because I felt like it was taking time away from doing other activities. Why “waste” time sleeping when I can learn a new skill, read a book, play music or create something? As a result, I haven’t always had much respect for the impact that proper rest can have in an intensive training regimen.

After almost 14 months of relentless physical training and rehab, repetitions, visualization exercises, thousands and thousands of attempts to connect my mind to my body and vice versa and reestablish those damaged neural connections… finally, I took a break.

I came to Hawaii with my girlfriend and spent a week fully unplugging from my intensive training and letting my body do something it hasn’t done since I was lying in a hospital bed last year: rest. I didn’t train in any way, I didn’t even do any mental exercises, I just completely tried to let myself forget my routine and enjoy these moments of rest and relaxation. The result was an incredible week of quality time with my girlfriend, some of the best sleep of my life, healing some extremely overused and tired shoulders and arms, and a near constant enjoyment of the present moment. At times, I can even say that I almost forgot about my injury completely, which was an incredible blessing.

Ok so in all honesty, I wasn’t completely inactive the whole time. Thanks to my girlfriend’s persistent urging, we got into a double kayak and spent almost an entire day paddling up a quiet river into the peaceful jungle. I didn’t think my core was strong enough to handle even five minutes in a kayak, but her insistence that I was ready and able was right. Proof:

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This trip is part rest and part therapy as I’ll now spend the next several days working with yet another practitioner, a person who’s had astounding results treating SCI with her own creative and unique approach using her system of Neurokinetic Pilates and emphasizing neuroplasticity, the belief that the brain and nervous system can rewire and repair itself. I’ll write about my experience with her in my next post, but for now, I’m still enjoying the tail end of this badly needed and deserved rest.

100% Active mental effort

I want to attempt to explain one of the more nebulous and perplexing aspects of my recovery. I’ve been wrapping my head around this for a while now but I haven’t quite figured out how to put it all into words and hopefully make it understandable for people without a Spinal Cord Injury. There is a significant process that is noticeably more difficult for me now than before my accident: the monumental, almost overwhelming mental effort that I have to put into all of my rehab.

Every exercise, movement, or activity that I do involves a massive mental commitment from me. This is nothing like what most of us are used to doing when we lift a weight, take a step, hold a stretch or pedal a bike. As an able bodied person, those actions are performed subconsciously. You don’t have to tell yourself and instruct seven different parts of your arm how to curl a dumbbell… you just do it. You don’t have to close your eyes, channel your breathing, try to contract one muscle while relaxing another just to take a step when you’re on a run… you just place one foot in front of the other and continue on. Not so with a Spinal Cord Injury.

Everything I do involves me REALLY thinking about it, specifically when it comes to those parts of my body that are most damaged by my injury and not functioning properly. The nerve signals just aren’t getting through like they used to so it takes me that much more effort to try to engage a muscle that hasn’t effectively received the signal to engage. This is what makes an injury to the nervous system so debilitating. It’s not just a matter of effort. If it were, then the many hours a day I spend on my rehab would have much quicker results.

I think back to what it felt like to exercise before my accident and it all just seems so easy to me now! I didn’t really have to think THAT much about what I was doing. I would just DO things, perform movements, complete activities, and ultimately I’d get stronger and fitter. I was never mentally drained from going on a run or biking half the day because I could do that repetitive motion subconsciously and with little to no mental strain, all the while listening to my iPod or chatting with a friend. Nowadays, if I don’t give 100% of my mental attention and focus to the specific movement I’m doing, not only will I have little to no chance of effectively completing the movement, I will finish the activity without any sense of accomplishment.

Another way to put it is that those muscles that I’m trying so desperately to wake up and reestablish the connection with will only have the teeniest, tiniest chance to get that signal from my brain only if I try really, really hard to break through the neurological impasse that’s taken root in various parts of my nervous system. This whole process has educated me greatly on how incredibly electrical our bodies are. No matter how big or strong our muscles may be, nothing can happen unless the wiring that’s distributed throughout the body is functioning properly. As a result, I often have to close my eyes and remove all visual stimuli in order to be able to give sufficient mental awareness and energy to what I’m doing.

This may seem arduous and exhausting, and it was at first, but now I have to admit I kinda like it. It makes me very present in what I’m doing, it forces me to tune everything else out and focus fully on the task at hand and although I wish I could see the results more quickly than I do, I know that this tremendous effort is what will sustain my recovery and continue the healing that I so desperately strive for.

A few thoughts on independence

What does it mean to be independent? What kinds of actions or activities are essential to do ourselves in order to feel satisfied with our own abilities and without having to rely on others? What would be the functions you would have to do in order to feel like you have the most minimal sense of independence?

Often times, when strangers look at me, they see the wheelchair, they see me unwillingly sitting down amidst a sea of standing humans and they may think, “well that guy can’t walk at this moment, but otherwise he seems to be doing ok.” My friends often tell me something similar, that I don’t look like I’ve suffered a major trauma anymore, that I’ve gotten strong enough to the point where I simply look like a normal dude, who just happens to be sitting in a wheelchair.

One of the more unnoticed aspects of Spinal Cord Injury is the loss of independence. To go from being able to do nearly everything for yourself to suddenly have to rely on others for practically everything is an awful reality of this situation. Many times I’ve heard the belief that there is no such thing as full independence, that we are all dependent on others in some way. This may be true, but to have any of your independence taken away from you is incredibly humiliating, frustrating and devastating.

I absolutely hate the fact that I have to ask for help of any kind from other people, and that it happens so frequently. Before my accident, I was thrilled to be as independent as I was, to the point that one of the main reasons I chose to ride a bike as my primary form of transportation was so I wouldn’t have to rely on the potential complications of a car or the improbable and unreliable nature of public transportation. I wanted to be as self-reliant as possible. If there was anything about my life that I wasn’t satisfied with, it didn’t take me long to take initiative, come up with a plan and make a change. (Granted, I was – and still am – fortunate enough to live in a society and country where so much was available to me and I actually had the opportunities to make significant life changes…I don’t take this for granted).

Nowadays, I find myself frequently prioritizing the actions and situations that I most greatly wish I could do independently. To say that the loss of independence that has come with this injury is a blow to my pride is a massive understatement. It’s one of the things that bothers me multiple times a day, everyday. But at the same time, I’ve been able to appreciate the massive gains I’ve made while remaining focused and motivated to continue to improve.

So I want to end by acknowledging what made me write this post now. A friend, and fellow SCI survivor, recently made a short video emphasizing the next step in her quest for independence and watching it made me think about all of these questions and about how my own thoughts on independence have changed since my injury. So I’d like to encourage you to think about what it would be like if you instantly lost the ability to do most things for yourself, if you had to rely on others for those things that you used to do without any thought or consideration, and what things are most important to you, for your independence.

If you’re interested, here’s the link to the video:

http://www.youtube.com/watch?v=LTDZ7pZYqbg&feature=youtu.be

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

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

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

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

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

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

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

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

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

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

Reflecting on my CORE Center experience

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

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

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

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

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

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

 

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

CORE Family

One in a million and a trip to SoCal

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

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

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

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