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

SCI Survey: Results and Summary

A couple of months ago, I wrote about my interest in finding out of the situation of other people who have suffered a Spinal Cord Injury and learning about their respective challenges as compared to mine by creating the SCI Survivors Survey. Thanks to a tremendous commitment of time and dedication by two friends (Laura and David, I’m so grateful for your help!), we were able to obtain incredible results from people’s experiences.

We’ve written a summary of the results and I wanted to share it here to continue the conversation and to highlight this too often underrepresented injury to those who may not know much about SCI. Thank you to everyone who openly and honestly responded to the survey and provided such an incredible wealth of information. And many thanks to everyone who helped in the process. I hope this can lead to some significant changes in how we deal with SCI.

SCI Survey Summary 

 As her fellow athletes recover from realizing their Olympic dreams, skier Maria Komissarova has just begun the hardest challenge of her life. The 23-year-old crashed during a practice run in Sochi[1], suffering a fractured spine that has paralyzed her from the waist down.

Komissarova now faces hardships unlike any she has ever faced. When the shock subsides, she will have to learn how to live day-to-day in her new condition while navigating a complex set of medical options. Her coach will be replaced by a spine specialist, her trainer by a physical therapist, her fame by a long and painful recovery that will be every bit as grueling as her Olympic training. State sports bodies and the Russian federation paid for her initial treatment but the federation says that the skier’s recovery may take a long time and extra money will be needed.

If an Olympic athlete needs to raise extra money for her recovery, what happens to people with a lesser public profile, who suffer similar devastating and life-altering Spinal Cord Injuries (SCIs)?

While Komissarova’s story has received press attention around the world, countless other SCI survivors (500,000 global cases a year[2]) struggle in anonymity to find answers to the physical, emotional, and financial struggles that now dominate their lives. Even though 12,000 people suffer SCIs each year in the United States alone[3], all too often, little is known about their plight.

Arash Bayatmakou wants answers. In 2012, the then 30-year-old San Francisco resident endured a horrific fall from a third floor balcony that shattered two cervical vertebrae and paralyzed him from the chest down. Despite being told by medical experts that significant recovery was unlikely and that he should accept his condition and adapt to life in a wheelchair, Arash remained determined to walk again and decided to make recovery, in his words, his “full-time job.”

The results have come slowly but steadily—improved hand and arm strength and dexterity, core strength, even a wiggling toe. Recently, Arash stood on his own for the first time since the accident. After proving the “impossible” to be possible several times on his road to recovery, Arash wants good information both for him and other SCI survivors.

How similar is his predicament to that of other SCI survivors? How many SCI survivors have been given little or no hope of recovery? How many are forced to pay out of pocket for necessities as fundamental as a wheelchair due to poor insurance? What are their experiences and how do they deal with this life-altering condition?

To find out, Arash, David Nihill and Laura Bekes put together the SCI Survivors Survey and the results show that his case is by no means the exception. While the severity of each injury is unique based on the extent of damage to the spinal cord (which controls all neural communication from the brain to the rest of the body), the potential effects are devastating as paralysis of the upper and/or lower body is almost always a result of the injury. In addition, some of the lesser-known, yet hugely significant, effects of SCI include impaired circulation and blood flow, loss of bladder and bowel function, changes in blood pressure, body temperature regulation, depression and a variety of other physical and psychological challenges.

With an injury as debilitating as this, the impacts are severe and detrimental to many aspects of the survivors’ lives, and many struggle to identify and access the resources they need to give themselves a chance at recovery.

There were 61 responses to the survey nationwide, with respondents of all ages (18-69 years old) and with injuries suffered as long ago as the 1970’s to as recently as 2013. Respondents were asked questions about their injuries, interactions with doctors and medical professionals, prognoses, attitudes and approaches to their recovery, experiences in and out of the hospital and rehabilitation centers, continuing therapy, financial impacts of the injury, and their current state.

To summarize the survey findings as briefly as possible: 1) It is very difficult to predict outcomes for people who have suffered an SCI; 2) Few people with SCIs feel they are receiving sufficient coverage from their health insurance for modern day therapy that could potentially improve their condition and help realize their recovery potential and; 3) Despite facing such difficult odds, the will to recover has led many people to challenge the expectations of their doctors and prove their prognoses wrong.

To begin with, almost everyone (83%) was given a prognosis of some sort, from an inconsistent variety of people including neurosurgeons, rehab doctors, nurses and physical therapists. The prognoses were given very shortly after their injury and/or surgery and the overwhelming majority (83%) were told that the possibility of walking was unlikely or impossible. This left few people hopeful for their chances of regaining function or improving their condition.

While the challenges that come with this injury are many (physical, emotional, financial, professional, etc.), one of the clearer findings from the survey was that many people reported doing better than what the original prognosis suggested would be achievable or possible. The degree of improvement ranged dramatically from some respondents claiming smaller yet significant physical changes (i.e. better upper body function, improved circulation, more stamina) to others who had major gains in lifestyle (i.e. increased independence, driving a car, maintaining a professional career, improved family and personal lives) to even those who had regained the ability to walk.

Struggles with insurance and the ensuing financial impacts were a common finding for many respondents. Specifically, despite facing an injury that leaves people unable to walk and paralyzed from chest or waist down, 18% did not have any of the cost for their wheelchair covered by their insurance. Upon leaving the hospital, 87% needed to make costly alterations to their home, 83% did not have help from insurance to cover additional at home costs/supplies (median of $3,600/year) incurred by the injury, and 44% had to turn to fundraising to help with expenses.

“They haven’t done anything more than the BARE minimum, they didn’t even pay for the wheelchair that they wanted me to spend the rest of my life in. They’re horrible, irresponsible, inconsiderate and inefficient. They should know that caring for me now and getting me better now would save them money in the long run but their approach to SCI is so antiquated and backwards.”

“I don’t think insurance companies understand the benefits… The true benefits… Of ongoing physical therapies for spinal cord injury survivors.”

“At the end of my stay (in hospital) I began to recover function of my legs. The rehab hospital requested more time from my insurance but was denied.”

The attitudes and approaches of doctors and medical professionals were often reported to be defeating and demoralizing. In fact, 67% of respondents said that their initial interactions with doctors did not leave them feeling hopeful for their chances of any kind of recovery. 63% of respondents were told to focus more on adapting to their injury than recovering from it.

“I told them I wanted to walk again and recover and they mostly laughed at me, dodged my question, didn’t give me answers and tried to just get me to focus on adaptation.”

“My prognosis doesn’t mean anything to me now as I know how flawed it was when they told me.”

 “I have recovered more than I ever thought. I can walk independently with [braces] and a walker. I was told I did not have enough function to ever do so.”

“Not going to ever walk again was my diagnosis, I am now walking.”

Despite the overwhelming physical challenges, the often less than optimistic prognoses, and the inconsistent attitudes and approaches encountered with medical professionals, the survey found that many respondents refused to give up hope for their chances for regaining function. 80% took part in some kind of ongoing rehab or therapy beyond initial inpatient rehab even though 74% did not have this therapy paid for by their insurance. 100% found this therapy to be beneficial (in a number of ways) including 51% who said that this therapy had reduced or eliminated their need for medication and 57% who reported that ongoing rehab or therapy had helped improve secondary conditions that come with SCI (e.g. blood pressure, bowel/bladder function, and Autonomic Dysreflexia).

“I needed much more therapy for many hours at a time. It wasn’t even close to giving me what I needed. I feel like my insurance pretty much gave up on me.”

“I have gone from wheelchair with no movement against gravity to standing, to walking with a walker (5 months), to forearm crutches (8 months), to unassisted (18 months). My rehab has helped me get stronger and push my life on my feet which has lead to more improvement.”

The survey confirmed a significant finding from previous research conducted by the National Spinal Cord Injury Association[4] in which a majority of respondents were told to exercise by their physicians but did not have access to a trained therapist and did not receive specific instructions regarding the kind of exercise to engage in or how often.

Overall, the SCI Survivors Survey provides some valuable information about what people go through following this life-changing injury, but it also raises a number of questions that are especially relevant now, with so much of the national conversation centered on healthcare.

Why is treatment of SCI not utilizing newer, more progressive treatment options more often? Even though the number of people who regain the ability to walk is small yet significant, why do medical professionals consistently frame the prognosis in a negative way and choose to tell people that they won’t get back on their feet? Why don’t they admit that they simply can’t predict outcomes and encourage people to work hard to try to reach their potential? Why are insurance companies not stepping up to the plate in providing better therapy options that can minimize secondary complications and prevent future hospital visits, and the exorbitant costs associated with them? Why does insurance appear to pay for continuing medication but all too often refuses to pay for more exercise or therapy that can reduce or eliminate the need for medication? How are people meant to deal with the financial impact of the injury if something as fundamental and necessary as a wheelchair is often not paid for by insurance?

The survey results suggest that the entire system of treating SCI is insufficient for helping SCI survivors maximize their chances for recovery, and in need of significant change. Because of the many complications and health needs that arise from a Spinal Cord Injury, SCI survivors develop a number of continuing medical needs from their respective healthcare providers. In a time where healthcare is a primary issue for many people, it’s important to think about how to help people who suffer this injury to live healthy and productive lives, with access to a healthcare system that is balanced in providing necessary and effective services while maintaining an efficient and financially sound system.

Arash, like so many other SCI survivors refuses to give up hope, drawing inspiration from the many people who have recovered to levels greater than anticipated. Like a number of respondents in the survey, he has to rely on sources and support outside of what his insurance has provided him in order to maintain his aggressive therapy schedule and to achieve his ultimate goal, to get back on his feet.

On March 20th, Comedy for a Spinal Cause will be hosting a standup comedy show in San Francisco showcasing local comedians with all proceeds benefitting Arash and his recovery. Find out more and purchase tickets here.


[3] U.S. Centers for Disease Control and Prevention

http://www.cdc.gov/traumaticbraininjury/scifacts.html

Olympic Observations

Seven one-hundredths of a second. That’s what separated the gold and silver medal finishers in the Women’s Giant Slalom downhill skiing event in the Sochi Olympics last week. As I was watching, I was struck by the tiny margins of difference that would determine the order of finishers in this event.  To put it another way, the top 9 finishers in the event completed the course within 1.77 seconds of each other! So less than 2 seconds decided the best in the world from the mediocre skiers.

This got me thinking of the athletes and what they do in the three years and 50ish weeks when they’re not in the olympics. Obviously, there’s a tremendous amount of training involved. For some of the more popular sports, the athletes may have the luxury of training nearly full-time while for some of the other olympic sports (i.e. curling, luge), I learned that most of the athletes have full-time jobs and careers and train for their sport on the side. Either way, the amount of hours and time that each of these people puts into practice and training is admirable and remarkable.

So going back to the ski race, I couldn’t help but feel astounded that for these skiers, who are the absolute best in the world, four years of intense and daily training and thousands upon thousands of repetitions of the same movements all lead to a day where their fates are decided in mere milliseconds.

This got me thinking about my own regimen and my own olympics (of sorts) that I’m training for. Despite my lifelong athleticism and passion for an active lifestyle, I know that before my accident, it was hard for me to fathom the life of an olympic athlete, spending THAT many hours of everyday training for an event in which you may not even be selected to compete. How could you justify waking up early, staying up late, sacrificing sleep and time for other aspects of life to train for an activity while knowing that you MAY have a chance to possibly go up against the best in the world and then and only then, maybe you will be seven one-hundredths of a second fast enough to win gold??!

Since the day I got out of surgery to repair my badly broken neck, since the day when I knew that my body was damaged yet my spirit was more resilient than ever, and since I knew that the road back to my feet would be a long and arduous one, I decided that I would do everything in my power and spend as many hours a day and as many days as necessary working towards my goal.

In this regard, I share something with those olympic athletes. Our commitments to our respective goals are unquestionably similar – I would even argue that I want to walk more than any athlete wants to win gold but I guess that’s gonna be hard to prove.

And so I understand now why someone would train so much for so long despite such slim chances of reaching their goals and winning the race, and being better than everyone else out there. If you want it badly enough, then no amount of practice or training or repetitions will be too daunting to prevent you from getting there, just seven one-hundredths of a second fast enough.

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.

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.