A gander through Bali & Lombok

One thing became very clear within minutes of driving out from the swanky, sparkling international airport in Bali: this was NOT going to be an accessible place for a wheelchair.

While I’ve learned to transfer into and out of most cars relatively comfortably – Hummers and massive pickup trucks aside – the minivans that taxis in Bali preferred (that looked like a Dodge Caravan that had been squished on both ends, making it taller and more compact) were a challenge to say the least. The sidewalks were narrow, potholed, bumpy, and their frequent stone steps made them completely unusable. Almost every single store or restaurant had at least a couple of tall, stone steps to enter. And all four of our lodging options – despite my meticulous review of online photos and numerous phone calls and emails confirming the lack of steps, obstacles or other impediments – indeed presented us with unexpected challenges.

But amidst all of these day-to-day struggles and unforeseen hiccups, we were blessed with incredibly helpful people who were always eager to help. I want to steer clear of the exhausted and overused trope I’ve read in so much travel writing and speak about the “friendliness of the locals” but I know no other way to admit just how helpful the locals were at all times. They were fantastic, never once approaching me in an uncooperative way or with confusion about how I enter or exit a particular building or car or storefront. We were consistently greeted with collaborative attitudes and helpful smiles. Yes we were tourists paying for their services, but I’ve traveled enough to know that simply paying someone for their work doesn’t necessarily result in sincere warmth and cooperation.

Even at the airport, as we were waiting on the tarmac to board our little plane that would make the 30-minute hop over to Lombok, Bali’s much quieter and less developed neighboring island, once the airport staff finally realized what we had repeatedly told them (that I would need assistance getting up the steep steps into the plane), they only scratched their heads in confusion for a couple of seconds before they sprang into action and one unfortunate baggage handler had the pleasure of piggybacking me up the stairs, inside the plane, and into the seat.

In fact, the only sideways stares and resentful glances I got were from the other tourists. The locals always treated me with respect but it was the European and North American travelers who made me feel the most uncomfortable. At one point, I practically had to hold Brita back from unleashing a verbal tirade upon an elderly French couple who seemed to go out of their way to be unhelpful and rude every time I was near them.

It was a wonderfully relaxing trip and allowed Brita and I to have some much needed downtime. I had never taken such a long break from my rehab and exercise but it became very clear that my body desperately needed this time to unwind, rest and relax. Every time I got antsy about my nonexistent exercise regimen, I reminded myself that after four years of going going going and working as hard as I had been, I was due to give myself a break.

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On the snorkeling boat to Menjangan Island

One of the highlights of the trip was doing an all-day snorkeling venture in what many people considered to be one of the best snorkeling places in Indonesia, if not all of Southeast Asia.

It took some friendly boat workers to help me on and off the rickety motor boat, but once I strapped on the snorkel and got in the water, I was in my element, loving every weightless moment and appreciating the opportunity to do a unique and memorable activity in a comfortable physical state, outside of the wheelchair and free of the confines of gravity.

While there were certainly some frustrations – not being able to explore as much as I wanted, physical pain and discomfort, and a steady flow of logistical challenges – Brita kept asking me if it was all worth it. If the long travel and the unfamiliar terrain and the different cultural attitudes and the physical struggles were all worth the effort?

After years of craving to go abroad and finally having the opportunity to feed my desire for international travel and novel explorations, my unequivocal and repeated response was YES.

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Dimming the muscle switch

With the arrival of 2016, and with it the continued realization that time passes faster and faster every year, it makes me reflect back on the goals and objectives that I set for my recovery last year, to the unfinished goals that I will carry over into the new year and to new objectives I will set for my continued path of spinal cord injury recovery.

I can confidently say that my body has changed significantly in the past year. In the last couple of weeks especially, I’ve been doing a lot more work in standing positions and my trainer has challenged me and in turn pushed the limits of the Pilates equipment (which have probably never been used for some of the exercises we do…) by coming up with novel ways of strengthening my current abilities and building off of those to challenge my body to find the next steps of function.

As a result, my endurance to stay standing – while much less than I would like – is noticeably better than it was even a month or so ago. I’ll share a video below to show one of the recent exercises I’ve been working on and one that went from needing a lot of assistance a couple of months ago, to now being able to control everything relatively smoothly on my own.

So where do I go from here?

One of my main goals for 2016 will be what I’m calling “dimming the switch.” I use the analogy of a light switch because it applies quite well to what I’m referring to.

Right now, the engagement that I get to the muscles of my lower body generally works like a light switch, meaning when I turn a certain set of muscles on or perform a particular movement, those muscles are on 100%, working hard, contracting strongly. When I decide to change positions or turn off, everything just kinda releases all at once. So I’m stuck with a light switch; on or off; 0 or 100%, with not much control of the in between.

For example, in the video above, if I were to try to bend my knees or do that same exercise in a light squat (which I must admit would be rather challenging for anyone), I would crumple to the ground, unable to dim that switch and maintain control of my stance. I either have to stay with legs locked straight or I get nothing at all.

You see where I’m going with this right?

The dimmer switch is essential to any kind of functional movement that I’m working to regain. I have to be able to control some muscles at 50 or 70% and not just 100%. Not only that, but I also have to relearn and retrain myself on how to differentiate one side of the body from the other. In other words, if I’m going to be able to successfully take steps, my left leg must be able to bear weight and be at 80 or 90 or 100% contraction while the right leg is lifted in the air and taking a step. It utterly blows my mind to think about how a healthy body and spinal cord can so naturally manage a movement pattern like walking that may seem simple, but is actually startlingly complex as it’s a consistent dimming up and down of different muscles at all times.

Like so much of what I have understood since my injury, our bodies and our movements are incredible and should not be taken for granted. It’s easy to underestimate just how much is involved with a seemingly simple set of movements, until you’re faced with an entirely different body that doesn’t react the same way.

So I will dedicate 2016 to finding that dimmer switch and being able to control my lower body movements more fluidly and effortlessly.

Grateful for more than the gobble gobble

I started writing this blog just over three years ago today, on the eve of this all-encompassing American holiday, and now I look back to the third blog post I wrote, just before Thanksgiving where I listed the reasons why I was thankful despite the horrific nature of my situation and being only four months out from my spinal cord injury. Fortunately, every reason for gratitude I listed on that day still applies to my life today, with some notable additions of course, and it makes for a good opportunity for me to recognize one particular thing for which I’m recently very grateful.

I’ve shared my experiences at length about the unique therapy I’ve done in Maui and its incredible contribution to my recovery but one of the biggest challenges I always had after coming back home from Maui was the struggle to find ways to continue doing that Pilates-based therapy. I always felt like I would make these huge gains in Maui, only to return and have that momentum of improvement stall. Luckily, that isn’t an issue anymore.

Absolute Center is a busy, successful and well-regarded Pilates studio a short drive from where I live and in recent months, it has become my primary place for rehab and wellness. When I met the owners of the studio, I don’t think any of us expected our encounter to lead to the establishment of a legitimate program geared towards people with spinal cord injuries completely different from their usual offerings, but that’s what has happened. There are scores of Pilates studios all around the country and the world but it took the curiosity, progressiveness, and forward thinking of the studio owners to recognize that there was an opportunity to provide this population with a viable option for this kind of Pilates based therapy.

My last few months of training and being able to continue working with the same principles and techniques that I learned in Maui have been invaluable for my recovery. I’ve seen greater gains in a short amount of time by virtue of being able to consistently train in a supportive environment and amongst talented and knowledgable people who are committed to help me reach my short and long-term goals. Additionally, a number of other people with spinal cord injuries have been training there too and as a result, alternative and creative approaches to spinal cord injury recovery are being explored and pursued.

I am grateful for meeting these people and having the opportunity to maximize my recovery efforts and I’m excited see how a more persistent commitment to this therapy will show itself with the improvements in my body by the time I go back to Maui again.

While I must admit that I don’t love turkey or a lot of typical Thanksgiving fare (which is why we make a somewhat less traditional feast!), what I do love about this holiday is the notion of taking a moment to be grateful. Happy Thanksgiving to everyone.

 

Another toe wiggle (finally)

If you’ve been following my recovery and reading my blog for a while, you may remember the post I wrote about waking up one morning and being able to wiggle my pinky toe with full control. This happened six months after my injury and at the time, I thought it heralded the process of most every muscle in my body slowly but consistently coming back under my full control. I was wrong…

In the two and a half years since, I have worked harder towards my recovery than anything else in my life. My day to day life was, and is still, 100% focused on recovery and on working towards my all important goal of getting back on my feet and walking. But despite all of that hard work, I didn’t regain function the way I was expecting. It was more than a little disheartening to regain full control of a body part, expect it to continue, and then tick off the days and weeks that went by without any further recovery of function. I’ve obviously made a huge amount of progress since then, which I don’t want to discount, but there was something so satisfying about regaining absolute control of any body part in my lower body that I didn’t experience since then… until now.

It seems that the pinky toe wanted a friend, that it became lonely and wanted a companion to dance along with it on my right foot. We’ve all been in that situation at a party, work event, or gathering where we don’t know anyone, where we long for companionship, where we hit the apex of desperation for someone, just anyone, to come along and give us a reprieve from our isolation. (Ok I admit that’s a little over dramatic but just humor me…).

Well the wait is over for my pinky toe.

A couple of weeks ago, I noticed something different in my right foot and when I looked down, I saw the second toe, the Co-Captain of the toes (yes that’s a Seinfeld reference, enjoy), wanting to join the movement train. Unlike the pinky though, moving the second toe was very subtle at first. I had to try really hard to make it move. But once that pathway of communication to the toe was open, all I had to do was hammer it over and over and over. And everyday after that, it became stronger to the point where now I have 95% control of it.

Ok so you may be thinking, “What is so important about a toe? How does that help with the goal of walking?” Well the answer is simple. If all of my recovery was supposed to stop after one or two years, like the doctors predicted, then the fact that I’ve regained control of any part of my lower body confirms how bogus that thinking is. More importantly, it shows that a new communication pathway has been established from my brain, that a signal that previously couldn’t get through is now able to make its way to its destination. And if that’s possible, three years after my injury, then anything is possible from here on out. New pathways can be established, new muscles can be innervated, new movements can occur and the hope of regaining more function is very much alive.

It may just be a toe but it’s a validation, however small, that everything I’m working on is leading to results, and that more recovery is going to come.

A repetition is an event

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

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

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

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

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

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

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

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

Two years since, and still moving forward

Yesterday, July 8th, marked two years since my Spinal Cord Injury, since everything that I knew about the world, about myself, about my body, and my life was turned upside down in an instant and launched me on this whirlwind of a journey that is recovery.

I wasn’t entirely sure if I was going to post about this strange date as its relevance is quite insignificant to me now. I remember last year, as my one year anniversary approached, I was stressed out and anxious (read my posting here if you’d like). Because the traditional thinking in our medical system says that most or all of recovery from SCI will occur in the first year or, if you’re lucky, in two, it was disheartening to think about the magnitude of that date and all that it implied. Oh how so much has changed…

Shortly after that day, I stopped counting the months since my accident. The eighth of the month, which had always been so present in my day-to-day consciousness especially as the calendar changed and a new month would arrive, became irrelevant. For the last many months, I actually completely forgot about the eighth of the month as I realized how unimportant it was. I told myself from the beginning that I was going to engage on the path to full recovery and that I would give everything I had to achieve my goals. Therefore, why should an antiquated way of thinking – an outdated medical approach that has been proven wrong repeatedly by those around me, one that quells and limits the spirit of recovery instead of encouraging it to flourish – why should that define my recovery? It shouldn’t, and it won’t.

I fully believe, as I have since the day I was injured, that with perseverance, diligence, unwavering commitment and by keeping my dream alive within me, that I can and will get back on my feet, no matter how long it takes. Also, I can’t overlook that an exceptional amount of my healing and breakthroughs have occurred only in the last few months! Maybe my spinal cord and my body did need a longer period of time to process and accept that initial trauma, but what started as the weakest me that me has ever known, has transformed into a period of continuous recovery and accomplishments.
Although it has been two very hard years, more trying, devastating, arduous, and insurmountably difficult than most anyone can imagine, I have learned tremendously during this time. I have challenged myself to an extreme I could never imagine and I have witnessed how much love surrounds me on this fight of mine. For that, I’m grateful. For the opportunity to continue on the path to realize my dream of walking and running again, I am hopeful and I continue to fight.
So thank you two year anniversary, thank you meaningless calendar date, thank you for reminding me that the human potential is not defined by 12 month cycles or doctors’ prognoses. If the spirit to heal is present, then the healing will persist. And further forward I push, looking forward to the next breakthrough and the next stage of recovery.