My own little island

Let my absence from my blog end! I’ll explain later why I haven’t kept up for a while but for now, it’s time for another update.

I’ve recently come to the conclusion that to continue my effective recovery from Spinal Cord Injury (SCI), I have to remain isolated on my own little island.

I’ve probably mentioned in the past that recovery from SCI is all over the place, to say the least. Depending on a variety of factors (many of which are not well understood, no matter what the medical community says) one’s ability to regain function, get stronger and recover is largely unpredictable. I’ve also explained how one’s initial functional capabilities following the injury is largely dependent on where the injury occurred on the spinal cord (higher up towards your neck and head or lower down towards your tailbone). But here’s where the ambiguity of this injury (and its recovery) becomes prominent.

People who are injured in the same exact location on their spinal cord can have drastically different capabilities and recoveries. For example, I’ve met a few dozen other people who broke the exact same vertebra in their neck as I did, C5 and C6 in the lower neck. Each and every one of these people’s situations is different, as is their respective recovery.

Unlike more common and less severe injuries (i.e. a torn ACL, broken bone, strained muscle), there is no standard protocol for how to pursue recovery following a SCI, even for each specific level of injury. Some are left with little function in their hands while others have an iron grip; some with zero core control, others with boxer’s abs; some can wiggle a toe or lift up a leg and some can’t even feel where their lower body is in space (proprioception). As a result, the timetable for recovery is all over the place.

I bring this all up now because the desire to compare one’s injury to others’ progress and recovery is, I think, inevitable and only natural. I hear of another person with a C5/C6 injury who was able to move something or regain function at a certain time after their injury and I immediately start to compare to myself.

“Can I do that yet? What does it mean if I can or can’t?”

“I wasn’t able to do this certain thing that someone else did at a specific point after the injury, so am I doomed?”

“Well, if I wasn’t able to do this function at this time then I may never be able to.” 

“If this one specific aspect of recovery was going to happen (like it did for someone else) then it should have happened by now.” 

These are the thoughts that run through my head when I talk to anyone else with a SCI. While it’s inspiring and motivating to hear that someone was able to perform a specific task or function, it also messes with my head and threatens to endanger my confidence and resolve. That’s why I believe that comparing one’s SCI to someone else, no matter how similar they may seem, is a zero sum game.

I don’t want to stop these conversations with others about their recoveries, so what I’ve had to do is place myself on my own little island of recovery, and force myself to remain there, all by myself. It’s difficult because I want solidarity with others. I want to hear someone tell me that it’s going to happen to me because it happened to them. I want to think that my recovery is linked to others, that I can use their timetables to structure my own and manage my expectations, but that’s just not the way it’s going to be.

This recovery is a solitary one. Comparing doesn’t get me anywhere, which is why I’ll stay on my own little island, and keep working towards my goal.

***

I’ve been away from the blog for a bit because I’ve had my hands full following up on my survey and garnering momentum for a petition I started to change the way SCI is approached and dealt with. My goal is to get the word out, get as many signatures as possible to my petition so that I can get it out to multiple forms of media. If you’re interested in signing my petition, check it out below. If you have any connections to media (journalists, websites, news sources….anything at all) and you want to share them with me, I’m grateful in advance.

http://www.change.org/petitions/healthcare-providers-medical-insurance-companies-provide-the-minimum-care-to-paralyzed-individuals

A milestone

Following up on my last post, where I wrote about never being satisfied of my accomplishments, yet trying to appreciate those achievements and celebrate progress, I want to share a recent milestone.

I recently started being able to do small squats using my quads, abs, and upper legs,  lying on a Total Gym machine. In this position, I have most of my body weight going through my legs, but not all of it. As you can see, my therapist is just helping to unlock my knees and bend my legs, then it’s up to me to push them back to straight. It takes me a lot of effort, as I have to use my arms to engage my lats (latissimus dorsi muscles), which engage my abs, which engage my quads. It’s strange that I can’t just tell my legs to move and that I have to use this sequence in order to get those leg muscles to contract, but I’ll take movement in the lower body, no matter how it comes.

I have to attribute much of this development to two major factors. The first is the consistent exercises I’ve been doing on an incredible technology from Germany, a standing vibration platform called the Galileo that vibrates side to side over 20 times a second, mimicking the movement of taking steps and sending a signal through my feet and up into my legs, spinal cord and brain. It has proven results in Europe and is just recently starting to become better known in the US.

The second factor is the knowledge and awareness of the body that I learned from my work with Alejandra in Maui, specifically the connective tissue in and around our muscles called fascia and the neural connections that exist within them. It was from her that I first learned about – and now fully believe in – the theory of fascia lines and how I could use certain muscles of my body that are under my control, to tap into and connect with other parts of the body in which I have less control. By constantly working on making this connection from my lats to my abs and lower body, it seems that a small signal is finally getting through. Now it’s on to working on this connection to make it stronger.

Alright, enough blabbing. Here’s the video. And now it’s on to the next achievement…  :)

Never satisfied

I’m never satisfied. It’s as simple as that, specifically in regards to my recovery.

As I write that, and I imagine as you may read it at first glance, it may seem extreme. In fact, many friends, family and readers of this blog have told me that I need to be better about acknowledging and appreciating the accomplishments that I make. As a result, I have put a lot of effort into recognizing my milestones and achievements, as small or seemingly insignificant as they may be. While this continues to be a huge challenge for me, I try to improve upon it everyday, as I know that my recovery is a long process and it’s impossible to reach the light at the end of the tunnel without appreciating those moments in between. All of that said, there’s something I really love about not being satisfied and I feel compelled to acknowledge the benefits of this stubborn, hard-headed approach that I embody.

I would attribute a great deal of my improvements and physical gains to this inherent characteristic of mine. You see, I LOVE to push myself. I always have. So when I accomplish anything, it’s natural for me to think to myself, “Well, that was good, but what’s next? How do I get even better?” When it comes to accomplishments and achievements, I can’t help but think of a cheesy yet very salient quote from some old martial arts movie where the sensei warns the student not to get overconfident because, “there is always someone better than you.” (If you know what this movie is, feel free to educate me)

It’s the same reason why I can’t stand arrogance or conceit in people. Why tell the world you’re really good at something when you always have a chance of getting better?

Ok so I realize this last bit may be misleading so let me clarify. I’m not saying that recognizing one’s accomplishments automatically equals arrogance. And I don’t think that we should all just wallow in mediocrity and never celebrate positive things. (As I’ve written about many times, I almost unwaveringly tend to see the positive in everything). But what I am saying is that by leaning to the side of under-acknowledging and downplaying my achievements, and by never feeling fully satisfied, I avoid complacency and I maintain my intense motivation and commitment to my recovery.

As I continue on this wild journey, I maintain the promise I’ve made to many people to stop and appreciate those small victories but by adhering to my stubbornness, competitiveness and will, I’ll keep my laser focus and I’ll keep going strong, always looking for the next challenge to conquer.

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.

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.

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…

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.

A word on nutrition

I recently found an old memento from my early days in the hospital last year. Less than a week after massive spinal surgery, I was completely immobile, laying in bed and the nurse brought me my lunch tray. On it was this:

"Health" shake

I was too weak to take a deep enough breath to laugh, yet I couldn’t help but smile, cringe and awkwardly chuckle to myself. “This? Am I really meant to drink THIS?” I know picking on hospital food is an easy target as no one expects it to be tasty, and to be totally fair, most of the actual food was not as bad as I expected. There were plenty of somewhat healthy options and they gave me a choice of what to eat instead of just arbitrarily shoving microwave hamburgers and canned peaches in my face. But this was surprising to me, especially given the circumstances.

….

Health Shake 2

Once I read the ingredient list, I couldn’t help but wonder….Aren’t I in a hospital, where I’m meant to get better? Shouldn’t I be avoiding a bunch of chemicals and synthetic additives? Isn’t it counterintuitive to ingest a bunch of processed artificialness when I’m in such a volatile state and my body only needs what’s essential and healthy? And that’s when I had an epiphanic moment and the reason why I asked my mom not to throw this carton away. I wanted to hang onto it because I knew this moment now would come and I could look back at the sardonic tragedy of this glimpse into our healthcare system.

It also seemed strangely comedic that I was being given no less than five different laxatives and medicines to help move things through my body (due to the fact that I was laying in bed for ten days) yet the food I was being served contained probably a quarter of the amount of daily fiber that a normal person would need. Why not ease up on the laxatives and feed me some extra broccoli or kale? Wouldn’t a fruit smoothie replace the need for all that medicine, not to mention that it would taste a lot better than this “fortified” strangeness?

I can laugh about this now because these days, I have the fortune of being able to eat a healthy diet of my choosing, but the reality of this paradox in our healthcare system still saddens me. We make all these gains, research and develop incredible technologies that improve the health of many, yet amidst this vast knowledge, hospitals are still serving synthetic chocolate milkshakes with “health” on the front, that look like they’re straight out of the 60′s?!