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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A slightly less lonely passport

Brazil. Nepal. Slovakia. India. Finland. The Hashemite Kingdom of Jordan (yes that’s the official name). Tunisia. Laos. Egypt. New Zealand. Norway. Peru.

Between 2003 and 2012, my passport filled with stamps from the many places I had the extraordinary privilege of traveling to. As a trip leader for a company with biking, hiking and multi-sport vacations all over the world, I had the incredible opportunity to live and work in a number of different countries, getting to know the cultures more intimately and having the chance to explore some of the less traveled paths. As a result, my time off from work while I was in these places allowed me to continue to travel and explore on my own, often times with little to no expectation or planning. It was as simple as finding a cheap flight and a fun destination and off I went.

A last minute schedule change to give me a week off from a long stretch of work in Tuscany allowed me to hop on a cheap flight to Romania and check out the land of Dracula. Killing time on a layover in Lima resulted in a chance stroll past a ticket counter advertising bargain flights to Buenos Aires so I had no choice but to pull out the credit card and book a flight for later in the summer. When my mom told me that she was going on a work trip to Sweden and I was on biking tours in Spain, I decided that it made perfect sense to squeeze in a trip up to northern Europe before continuing my schedule on the Iberian peninsula.

And so it went again and again and I was able to spend my twenties seeing much of the world and developing an insatiable desire to continue exploring and becoming exposed to different cultures, peoples, and ways of life. In 2008 I had to get extra pages added into my passport to accommodate the flow of visas and stamps I was accumulating and that’s when I came up with a simple life goal for myself: to have the number of countries I’ve visited always be a higher number than my age.

The last international trip before my injury was in January 2012 when I went to Colombia with one of my closest friends. Because it was the 37th country I had visited at that point, I knew I had a few years buffer before my age would catch up but for a long time, my severely weakened physical state as well as the daunting logistical challenges involved in traveling abroad prevented me from fulfilling my ever-present urge to get out into the world. This was the case until recently when Brita and I decided that enough was enough.

After four and a half years of not leaving the good ol’ U S of A, and countless experiences of hiding my envy and jealousy of my friends and family as they regaled me with their stories of travel, the two of us decided to fly almost as far away as possible and spend two weeks in Indonesia.

After allowing my passport to expire three years ago – a virtually unthinkable prospect back in my heyday of globetrotting – I had to trade in my trusty, wrinkled, beat up version with its haphazard stamps and sewn in extra pages for a blank, lonely new passport. When it arrived, I flipped through its empty pages, wondering if and when I could fill it with more country names (recognizing these as gross oversimplified symbols of novel trips) before readying it to get christened on this first adventure.

Gone were the days of stuffing some items into a backpack and carelessly jumping onto a plane with little planning or preparation, knowing that everything would inevitably work out. Nowadays anywhere I go, even if it’s for one night, requires that I meticulously go through a long list of essential items for my health and comfort. Add on to that the unpredictability of where we were going and how easy or difficult every single thing would be, and my packing list was just a little bit more complicated than it used to be, to say the least.

But pack we did, and I grabbed my lonely, blank, rigid passport and smiled at the thought of this new chapter as we headed out…

Next post: A summary and reflection of our trip 

Swim like a cannibal pioneer

Throughout my journey of recovery from spinal cord injury, as I’ve maintained my focus and commitment on reaching my ultimate goal of getting back on my feet and walking, I’ve learned the value of setting and working towards smaller goals. The proverbial mountain I’m trying to climb is bigger than anything I’ve ever experienced and I have been, and continue to be, in it for the long haul. I’m proud of the progress I’ve made and the accomplishments that I’ve achieved (all of which I was told I wouldn’t do) but I would be lying if I said that my journey has been anything but arduous, full of challenges, breakthroughs, moments of immense frustration and moments of unparalleled hopefulness.

Because of the immensity of my goal, I have found focus and comfort in setting smaller, more attainable objectives and working towards those. The best example of this was the months and months of hard work I did that was dedicated to the moment I would be able to finally stand up on my own and ask Brita to marry me.

I’ve previously shared my newfound love of being in the water and swimming largely because of the freedom I feel from the weightlessness and the relief of pain from not having to deal with gravity and its impact on my body. Last summer, I set a goal to complete a 2.4 mile open water swim and I thoroughly enjoyed the process of training as well as actually completing the swim. But I remember that the moment it was over, I was already looking ahead to the next challenge. A couple months later, during a trip to visit friends, Brita and I swam in Lake Tahoe’s smaller, slightly warmer, less sexy and well-known but still gorgeous neighbor: Donner Lake.

Since I was seeking a new swimming challenge and wasn’t quite able to find an existing event that could serve the purpose (the swims weren’t long enough or they were relays with too much distance or the water temperature and other conditions were too challenging), I decided I would make up my own event and the answer couldn’t be more obvious.

Though I toyed with the idea for quite some time, it’s only recently that I finally put the pieces together and decided that my new challenge would be to circumnavigate the perimeter of Donner Lake, which by my best Google Earth estimates, comes out to 5.8 miles.

Yes it’s more than double what I did last summer, yes it will be at 6000 feet of altitude, and yes with my steady but very slow pace of swimming it will likely take me the equivalent of a cross-country flight, but I couldn’t be more excited about it. I want the swim to be about so much more than just my personal commitment to work towards this goal (I’m going to do that no matter what) so I’m inviting friends and others to join me in this endeavor. Whether swimming is completely new or a familiar activity, working towards a personal goal, whatever that may be, is what I want to encourage.

The non-profit that a few friends and I recently established (more to come on that on a future post) will be organizing the swim and raising money for our mission. If you’re interested in participating, you can join as a swimmer or non-swimmer (there are options to kayak, paddleboard, or just simply hang out, cheer and support), just comment on the post or contact me individually.

Because it’s in Donner Lake, near Donner Pass and everything else named Donner, the swim is the Donner Party Swim. For those of you not from Northern California who didn’t hear the story of the Donner Party pioneers (yes there was cannibalism involved) a thousand times as a child, educate yourselves here.

Before my injury, with a fully functional body, I could barely swim a quarter of a mile in the pool before gasping for air and calling it quits. Two years ago, I could swim no more than a couple hundred meters but only with a snorkel and many rest breaks. A year ago, I thought it would be nearly impossible to swim 2.4 miles in open water. Now, it’s time to work towards something much bigger and more challenging, to prove that I can do it, but also to remind myself that this will be just another step in my larger journey of recovery and reaching my ultimate goal.

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.

The proof and the pudding for Visualization

A few days ago, news came out of a research study from UC Irvine of a man using his thoughts to move his legs and walk by circumventing his damaged spinal cord. He was five years post Spinal Cord Injury, with no motor or sensory function below his level of injury and was able to train his brain and body to relearn how to walk. The process didn’t involve an implant or surgery but instead used an electroencephalogram (EEG) system that sent his brain signals directly to electrodes attached to his legs.

Although he was the only subject in the study, thus proving that the results must be replicated many times for them to have a more significant impact, this is still an incredibly exciting breakthrough. I recently wrote a post about my thoughts on cures for SCI and while I have no doubt that scientists will continue to explore this method and improve upon it, for me the most interesting element of the study, and the most relevant, was one of the more subtle points.

“He first underwent mental training to reactivate the brain areas responsible for controlling movements involved in walking. The researchers placed an EEG cap on his head to read his brainwaves, and he trained to control an avatar in a virtual reality setting.” (CBS News)

In other words, he had to visualize moving his legs and walking in order to establish that pattern of brain signals and then, just like strengthening a muscle by lifting weights or exercising, he had to continuously exercise that visualization pattern and strengthen the connection between the thought and the movement he wanted to achieve.

I’ve written at length about my frustrations with the inconsistency and shortcomings of the medical establishment when it comes to Spinal Cord Injury, but one thing that I did consistently hear from almost every medical practitioner was the importance of visualization as an essential element in one’s recovery. Everyone said this to me. “If you can’t move that part of your body, then think about it. Try to move it as much as you can. Keep sending those signals.”

As a result, so much of my recovery efforts are based on combining my intent and effort to send the signal of movement from my brain to a part of my body and then achieving that movement either with the support of equipment or a person and most often both. Even when I swim, I’ve established the habit of constantly thinking about kicking my legs and propelling myself forward using my lower body, even if I have difficulty doing so on my own.

But how do I know if my efforts to visualize and send brain signals are actually accomplishing anything? Is it possible to measure visualization skills in any way?

In my belief, those breakthroughs of progress that I’ve achieved must be somewhat attributed to the  diligent effort to visualize and constantly try to tap into the mental aspect of my training as much as the physical. While it’s impossible to say that X amount of this one accomplishment is due to visualization I did on certain specific days, I think the bottom line is that the mental exercise can and does lead to physical results, as evidenced by this research.

Furthermore, neuroplasticity (the all important yet still not widely accepted concept that the brain and nervous system is not hard wired and can rewire and repair itself) gets a big boost from this research. The old school, outdated way of thinking about the neurological system would say that any damage to the system is permanent and irreparable. But if a guy can go five years after his injury, and in a manner of a few weeks visualize and retrain those parts of the brain responsible for sending signals to his lower body, and then find a way to move those muscles and walk by skipping over the damaged part of his spinal cord, then I don’t think there’s any question that neuroplasticity is real and should finally become acknowledged and taught in the medical textbooks.

I’m happy to see this story confirm the importance and success of visualization and hope that it can lead to further developments and more progressive ways of treating SCI and neurological conditions.

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.

Stupid comments and positive outcomes

Recent conversation outside my local coffee shop. I’m sitting and chatting with my friend when a woman in her mid 40s, slightly disheveled but generally pretty normal looking, walks out of the café, stops in her tracks about ten feet away and addresses me:

 

Woman: Are you really in a wheelchair? Do you actually need it?

Me: Excuse me?

W: I’m just wondering if you’re actually paralyzed and if you need the chair or if you’re just using it, because…well…you know.

M: Um…do you really think I’d be in this damn wheelchair if I didn’t need to?

W: Well it’s just that you’re sitting with your legs sprawled open and you don’t look like you need to use that chair, so I’m wondering if you’re actually paralyzed.

M: Do you make it a habit of asking strangers such personal questions about their conditions?

W: Well, I know people who are actually paralyzed are usually very open about talking about these things and you just don’t look like you actually need a wheelchair. So, are you or not?

M: This conversation is over.

W: Well! I guess that answers that then, doesn’t it?!

M: You need to leave now lady.

 

She storms off, leaving me to wonder why she’s the one who’s agitated and exasperated.

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In the time since my spinal cord injury, I have rarely, if ever, had any negative or insulting interactions with strangers in public. Initially, the fear of such an interaction terrified me. I was fearful of going anywhere in public, I was anxious about the looks I would get, the expressions of curiosity and bewilderment I would inevitably see on people’s revealing faces as they walked by me in the street, towering two feet above me.

But time and time again, I’ve been proven wrong. Ninety-eight percent of the time, I’m treated with civility, genuine greetings, and offers to hold the door open or move a chair out of the way to let me through. Of course, every single concession or accommodation that people make for me adds to my immense frustration at not yet being able to move freely on my feet, at eye level, where I want to be. Frustration aside, other than some confused, staring children who often don’t seem to know what to make of a guy in a wheelchair, I’ve become accustomed to cordiality and respect in public.

For that reason, I suppose I was due for a strange and unsettling interaction like this one.

I still hate everything about the wheelchair with the same passion and vitriol that I’ve had since day one. So naturally, I really dislike anyone noticing it or pointing something out about it. I continue to pray and hope for the day when it is a thing of the past and I won’t have to have this unwelcome companion with me at all times. That said, I’m not clueless, I realize that a society full of people who are upright and then a person who’s sitting down, rolling by is going to be noticed, but maybe because of the general progressiveness and open minded mentality of the people where I live, I don’t often have to worry about feeling too noticed for standing out, but of course this time it was different.

If the inappropriate and nosy questioning didn’t prove the nuttiness of this strange and sad woman, then my ensuing conversation with the cafe worker did. He came out, apologized for her behavior and said that she had ruffled some feathers with him as well when she purchased a pastry, ate some of it, complained about its price yet refused a refund, then continued to eat almost the entire pastry before returning to the counter and demanding a refund, which she was politely given. The point was proven: this person didn’t know how to interact with society and in the span of two minutes had angered a handful of people.

As she walked away, my friend (who has been a tremendous source of support and encouragement for me since my injury), instantly knew that I was on the verge of getting upset and deftly changed the course of my emotions. He told me that as crazy and weird as she had been, she was 100% right about one thing: I don’t look like I belong in a wheelchair. He said that he’s been noticing it for quite some time, that my overall health, confidence and increased strength make me look less and less like the vulnerable and weak person that I was not too long ago, and more and more like someone who’s about to jump out of the chair and start running down the street. He pointed out that I was sitting so unusually in the chair, scooted forward on the cushion with my feet on the ground and my legs comfortably spread apart, and the lady just didn’t know what to make of it.

I’m grateful for my friend for helping me take an awkward and potentially frustrating public interaction and treat it as a positive occurrence. In fact, within seconds of Mrs. Nuttipants’ departure, likely to annoy another self-respecting citizen or two, I had forgotten about the entire thing. I realize that had this conversation happened a year ago, I might have had a very different reaction but this time, I got the last laugh.