Body Language & Conversation Escapes

We’ve all been there before. You’re at a party or social gathering and you find yourself cornered by someone who can’t stop talking. Escape seems impossible. You don’t want to be rude but it’s obvious that the person thinks what they’re saying is much more interesting than it actually is so you start to scheme an exit plan. The easiest excuses are usually the bathroom or the need to get a drink or food but sometimes it’s not quite so easy. At this point, whether conscious or not, your body language starts to indicate your immediate desire for an end to the conversation.

Maybe your eyes wander around the room, desperately seeking the welcoming face of a friend, or you start to lean or move away from the person, or your hands and body give some other cues that you’re simply not engaged in the conversation. One way or another, you finally make your way out and are grateful for the social freedom that seemed unobtainable just moments ago.

While scenarios like this are difficult enough, navigating them is even more challenging if you’re a wheelchair user.

I’ve written previously about the challenges of moving through the world two feet shorter than most others and how it impacts my mentality, but I’m long overdue to share a few thoughts on the differences of body language cues that I’ve encountered. I share these not only to express my perspective (and yes, to vent a little bit…) but hopefully to educate and raise awareness for others for when they’re talking to someone using a wheelchair or who simply can’t walk or move “normally”, particularly in crowds.

1) Just because I’m sitting and facing you doesn’t mean I’m interested in what you’re saying.

I know it’s blunt but I have to be 100% honest. This is my number one pet peeve and my most common body language struggle when it comes to social interactions.

Countless times, I’ve been stuck talking to someone (or, I should say, listening impatiently to them) and they’re clueless that for whatever reason, I’m not interested anymore. My theory is that because I’m sitting down and facing them and, yes, looking up at them, they think that I’m a captive audience. And I can understand some of the reasoning for that. I think it’s natural that if you’re standing above and talking down (literally, not figuratively) to people, you’re inclined to think that they are interested in listening to you. Think of a teacher in a classroom or a performer onstage or a speaker talking to a roomful of seated people.

But there have been too many times where I’ve tried to subtly express my disinterest in the conversation and only been met by the person continuing to talk at me. And because they’re standing right in front of me and blocking me from seeing most of the room, it’s hard for me to find an obvious excuse to cut the conversation short.

Like it or not, our respective physical presence has a huge impact on the way we interact. If a seven foot tall person is towering over you and talking, you’re more likely to listen than if it’s someone who’s much shorter than you. But if you’re the person with a larger physical presence, that presence can feel intimidating and cornering.

And that brings me to point number two…

2) Body language is muted when you’re not using your whole body

I’ve been in too many situations where I’ve needed to quickly leave a conversation (i.e. urgently need to use the restroom, wanting to catch someone before they leave, or just simply being in a rush to leave) and my body language cues are not being picked up by the person(s) I’m talking to. I can’t step back or lean to a side or fidget the way an able-bodied person could that would likely convey the need to let me out! On top of that, because I can’t see above people’s shoulders, it’s nearly impossible for me to look around the room and make eye contact with someone else to call out for a conversation rescue.

3) Being cornered or trapped in any way is very limiting and unpleasant

I think everyone can relate…. This situation has occurred to me the most frequently in restaurants or large mealtime gatherings. I’ll find myself at a table that’s difficult to get in and out of. Therefore, not only do I feel awkward having to ask people to move or bump into purses hanging off the back of a chair, I’m less inclined to want to use the restroom or simply get up and leave the table for any reason. And so I unwittingly accept that I’m stuck, and it’s not very fun.

I used to love parties and concerts, crowds and gatherings, and being in a big group of people. But often times now, these situations make me anxious and uncomfortable and so I avoid them. But I will say that I’ve become EXTREMELY grateful and appreciative of people when they DO recognize these physical challenges and go out of their way to pick up my cues or simply ask me what I need. It makes all the difference in the world.

So let’s all try to be more mindful of how we move through the world, how we converse with others, and the social and body language cues that we encounter. And if you see someone in a wheelchair or physically limited, be extra nice and considerate of them. You may think your story is super interesting, and there’s a chance that it is, but they may just be dying to have a bite of food or use the bathroom.  🙂

“Little Big Steps” has published!

I could not be more thrilled, excited, proud (and relieved) to announce the publish of my book, “Little Big Steps – A Life-Changing Injury and the Inspirational Journey to Overcome the Odds.”

I’ve been working on it for almost three years and I have to credit all of you, readers of my blog and supporters of my recovery, for giving me the inspiration and motivation to take on this project.

If it weren’t for all the feedback and interest that I received about some of my early blog posts, I would not have known to dig into these stories, expand and explore the depth in each of them, and understand that I could actually be capable of turning them into a larger story. But here I am, a couple years later and with a book that I think can be interesting to all people, not just those dealing with a traumatic or life-changing event or adversity in their lives. Although the story of my injury and ensuing recovery is very unique to me, in writing this book I have selected the moments, perspectives, and experiences from my journey that are likely the most informative and relevant to readers.

So let this be my shameless plug. I ain’t no JK Rowling or Malcolm Gladwell, but with a strong wave of support and early sales of the book, especially in these initial days, I can make myself known to the bookselling gods, so please check it out! All the info and links to buy are on my book page. 

It’s available in print and all e-book formats (Kindle, Nook, Kobo, etc.) and for you listener/readers, the audiobook will be ready in just a few days. If you have enjoyed my writing and blog posts at any point, then the book is for you! Or maybe for a friend or family member? At the very least, an ornamental piece?

Thank you for all your support and for helping me make this happen.

Photo on 9-28-17 at 12.37 PM

 

Five Years On…

I have a very vivid memory of the first day of school in fourth grade. I remember the begrudging acceptance that summer vacation was over, the yearning for just one more long day spent outside and out of the confines of school, and looking up at the calendar on the wall, next to the teacher’s desk, with SEPTEMBER folded open. I remember thinking to myself that it could literally be an eternity before all those ensuing months would pass, the calendar would flip to June and the liberation of summer would commence anew.

I don’t know about all of you but for the elementary school me, nine months felt like—and turned out to be—a very long time. By the time the following summer came, it seemed like I had been through endless glances at the calendar and a brutally long build up to the end of the school year.

We all know that as we get older, time does indeed move faster since a week, month, or year represents a smaller and smaller fraction of our full lives.

Today marks five years since my life was turned upside down by a spinal cord injury. Five years since everything I knew about my body and how I interacted with the world was broken, shattered, and left to be pieced back together (literally and figuratively).

Five years. 260 weeks. Half a decade. Has it felt like a long time? Or has it gone by fast? The answer, as you can probably imagine, is both.

On the one hand, five years have gone by surprisingly quickly. The weeks and months do seem to pass faster and faster every year. And I can very clearly remember my life before July 8, 2012 and it doesn’t seem like a long time ago at all. Maybe it’s because nearly every night in my dreams I walk, run, play sports and have more control over my body than I do in waking hours. Sometimes, in a lucid dream, I realize what’s happening and I tell myself to savor every second of it, knowing that I will inevitably wake up and go back to a very different reality.

But on the other hand, five years has also felt like a five-term life sentence in prison. To think that I’ve woken up 1825 days and encountered this body is still terrifying. To recognize how many singular moments of struggle, pain and discomfort I’ve experienced is mind-numbing and overwhelming. I can’t even conceptualize how many times I’ve had the wish, prayer and desire to somehow get rid of the impacts of this injury and go back to a day-to-day life that doesn’t need to be planned around managing pain and obsessively analyzing sidewalks, curbs, stairs, ramps and building access. Thousands of times? Millions? Possibly.

When it comes to the time frame of my injury—and especially when I’m approaching an anniversary—people often ask me two related questions:

1. Has living with this injury become easier at all?

2. Have I gotten used to it?

The short answer to both questions is an unequivocal NO.

I’m sorry if that’s not what people want to hear but it’s the truth. I’ve heard other people say, “oh you’ll get used to it” or “it’s not that bad once you figure things out.” In fact, I’ll never forget the hospital worker who told me—just days after my surgery—to look at the bright side: “At least when you go to a baseball game or crowded event you’ll have a comfortable chair to sit in and won’t have to stand in line!” (How or why the hospital employed and allowed that person to speak to people early after their injuries is still beyond me…)

I know of many people who’ve suffered spinal cord injuries who have said that things did get easier after a while, that they did get used to using a wheelchair and while I respect each person’s individual opinion and experience, that approach has not worked for me, and I’m not sure it ever will. I’ve been told I’m hard-headed (true); I’ve been told that my effort to improve my body and work on my recovery is simply delaying the inevitable; and I’ve been told that this injury can’t be beat, so the sooner I “accept my current condition”, the happier I’ll be.

Bullshit.

Yes this recovery hasn’t gone as fast as I would like. Yes I haven’t reached all of my physical or functional goals yet. And yes there is still a long ways to go. But if I had listened to those voices early on, there’s no way I could have stood up and asked Brita to marry me. There’s no way I could have gained enough strength in my abdominals, back and core to train for and complete a five-mile swim. And there’s no way I would have continued to gain physical breakthroughs and new neurological connections in my third, fourth, and fifth years after the injury, long after that two-year window when the doctors said the healing would surely stop.

The truth is that it’s because of, not in spite of, my commitment to my objectives and diligence that some things have gotten easier. But while certain challenges have lessened or been addressed with novel solutions, new challenges have always arisen.

Reducing pain or discomfort in one part of my body has resulted in new pain somewhere else. Because I have sensation all over my body, I am not disconnected from my lower body and know that being in any one position is uncomfortable and unwise. I still have to plan every single day around minimizing physical pain and how much time I spend in the wheelchair.

The psychological burden of dealing with this injury has become more manageable, but by no means would I say that it’s something I’ve become used to. The truth is that it sucked five years ago when I woke up in the hospital, and while many things have changed and improved, it still sucks today. Again, I’m sorry if this isn’t the narrative or story that people want to hear but I’ve only been sincere and genuine in this blog and so I share all of this with the utmost honesty.

One thing I admit I have learned and accepted is how to find joy and embrace moments of happiness despite all of my day-to-day challenges. For the first few years after my injury, I lived with a mindset that I could not and should not allow myself to feel happiness because that would somehow concede and accept defeat. I’ve learned—through the wisdom, love and support of my family, friends and most of all my incredible very-soon-to-be-wife Brita—to allow joy and happiness back into my life.

I no longer push away those experiences. I no longer think of joyful emotions as distractions from my commitment and pursuit of a healthier and stronger body and a more fulfilled life.

So where do all these ramblings leave me right now, on this five year anniversary and moving forward?

I am still working just as hard as ever on improving my condition. I refuse to live a life of perpetual discomfort and pain. I refuse to accept externally imposed limitations and societal and medical customs of what living with a disability should be like. I refuse to abide by a narrative that “it’s all ok now,” that “things aren’t so bad,” that time has healed all the wounds.

I will continue to listen to my body first and foremost. I will work hard and keep striving for new connections and improvements. I will push myself as long as the fire in me burns (and it’s burning as strong as ever now). I will rest when it is needed and beneficial and I will continue to carve out my own path to a better, healthier, more functional, more fulfilling life.

I am still bitter about the prognoses and outdated expectations that the medical establishment set for me. Instead of telling me that all the healing would occur in one year or two max, that after that I wouldn’t get better, I wonder where I would be now if they had provided more encouragement, support and validation for the potential to continue improving for many years to come. Although I never took them for their word or accepted their arbitrary prognostications, I know that those words impacted me profoundly.

In addition to the pursuit of my personal recovery objectives, I will continue to do everything I can to educate, inform, and alter the ubiquitous approach that our medical system still teaches and promotes to people dealing with spinal cord injuries. There is no place for a method that takes away hope and possibility from so many people in their most vulnerable time. This must change.

The human spirit is strong. The will to work towards something seemingly unachievable should not be discouraged or doubted. And our individual and subjective understanding of time, of what days and months and years mean to each of us, and what we each want to do with our limited time on this planet, should be explored and revered.

I never thought I could make it through five years of living with this injury, but I have. And I hope to continue on my path for another five, fifteen or fifty years to come.

Exciting News! – A book is coming….

When I started writing this blog in November of 2012, just five months after I suffered a traumatic spinal cord injury, my intention was only to have an honest and unobtrusive way to keep my family and friends updated on the process of my recovery: the struggles, challenges, objectives, achievements, breakthroughs and thought processes behind this insane journey. I didn’t want to crowd everyone’s inbox with emails or spew out random thoughts or take to social media for these updates, so I figured I would write a blog and have it out there for whomever was interested in staying in the loop.

Little did I know where this would lead…

Thanks to all of you and your continued interest, support, encouragement and readership, the blog continued to grow and reach more people than I could ever imagine. Within a few months of me launching this website and sharing my story, I was getting readers and messages from all over the world. People were asking questions, seeking advice (for which I had very little to provide…), searching for perspective, and often times, relating some of the experiences I was sharing to their own respective experiences. I also learned that there were many people out there — with spinal cord injuries or other medical conditions or just life challenges — who could identify with some of the larger issues that I would sometimes raise.

I was flattered to have anyone outside of my personal social community care or read about my story and it wasn’t until many of you commented and told me that you wanted to know more about a specific story, that you were curious about something I had shared and asked me to delve more into it, that I got the idea for doing something bigger.

Well, I can now say that that bigger something is coming very soon.

For the better part of the last two years — and with increasing intensity, energy, time and commitment — I have been turning the story of my recovery into a book. And this book is coming to fruition now as I am in the final process of revisions and edits to get it ready to publish.

This blog has been so many positive things for me but I didn’t expect that it would spark the creative effort and undertaking of completing a full-on memoir of my experience. But alas, that’s where we are.

I will be posting more info very soon about the book — including a landing page where you can sign up to get updates and have access to an advance copy, as well as a specific timeline for the final publish (summer reading anyone???) — but for now, I want to thank all of you for the incredible support and commitment you’ve shown me in reading my blog, commenting, sharing your perspectives and launching this crazy little idea within me that will hopefully turn into something real and tangible very soon.

I always have, and still continue to read and respond to every single comment that has ever been posted on this blog and if it weren’t for the conversations that you have all initiated with me, this likely would not have happened. So thank you. I’m grateful to have this opportunity. And I’m excited to share the larger story very soon…

Finally finding exhaustion

I want to be exhausted. I want to push myself beyond what I thought was imaginable and then push more. I want that feeling of satisfaction that comes with knowing that I have absolutely nothing left in the tank. And, until recently, I hadn’t found this feeling for years.

I’ve mentioned fatigue quite a bit throughout my posts and it’s always something I struggle to describe clearly. The conversations are often like this:

Them: “How long do you do that exercise before you get tired?”

Me: “It’s hard to say. There are so many factors that go into how I’m doing on a particular day that it’s not always easy to know why my body reacts in certain ways. Some days, I’ll be really tight and it will be hard to move because of that. Other days I just might not connect to the muscles that I want.”

Them: “So you’re just tired from the beginning? Or from something you did the day before?”

Me: “Um… kinda… but not really. It’s not tired, it’s just that I may not have the ability to get the neurological connection to make the movement.”

Them: “You mean like you’re sore?  Your muscles just don’t respond?”

Me: “Yeah sorta like the responding. It’s not soreness. I haven’t felt sore at all in years. At least not in my legs. I’m always sore in my shoulders, neck and arms, like, all the time. But with my legs it’s just… I don’t know… it’s hard to describe.”

And that’s usually where I give up.

In my last post, I talked about neurological fatigue, that unique sensation that best describes that sensation of not being able to connect to a movement or to specific muscles in my lower body. Recently, on my most recent trip to visit Alejandra and applying the lessons of her one-0f-a-kind Neurokinetic Pilates method, I finally found exhaustion. And not the esoteric neurological kind that I have a hard time describing. Just good ol’ fashioned “I want to collapse and lay down and not move” exhaustion. And it felt amazing.

I’ve written extensively about how Alejandra is always able to find and make new connections within my body, and this time was no exception. On the first day I see her, she always asks me what my objective is for the time I’m with her. This time, I repeated the same exact thing I told her last year: that I want to get the connection for hip flexion, that is, to pick up one foot and take a step already…

Unlike last year when she told me that she didn’t think I was ready for that yet and I needed to work on a bunch of other movements in order to get myself strong enough to even be able to attempt hip flexion, this trip was a different story. Alejandra agreed that it was the right time that I try to start tackling this immense challenge for me: going against gravity to lift a foot off the ground step it in front of the other. Sounds simple, but not for me.

Alejandra did what she always does, she took the exercises I was doing (which I shared with videos in my last post), and pushed me much further beyond my comfort zone. The result was that for the first time in years, I was actually 100% physically and mentally tired and exhausted after each day of working with her. She was able to find the limits of both my physical fatigue as well as my neurological fatigue, crush them both and push me much further into an entirely new realm of exhaustion.

My videos are below. The significant thing to understand is that until I saw her, I was doing similar exercises always facing forwards on the CoreAlign machine, with the comfort and security of the ladder in front of me and with both arms bracing me. With her, we turned everything sideways, so that there was literally nothing in front of my knees and I could only hold on with one arm. To say that it pushed my boundaries is a massive understatement and now I have the satisfaction of knowing that in just a couple of weeks, she was able to dramatically push my limits and get me to work in that sweet spot of struggle, abject fear that I may collapse, and the ensuing accomplishment.

And I can finally remember, and relive, the feeling of exhaustion.

 

 

Staying upright and reviving the Running Man

With a new year comes new accomplishments and new objectives in my journey of recovery. The last few months of 2016 brought with them the ability for me to work harder and longer in a standing position, relying greatly on the Core Align, the piece of Pilates equipment with sliding carts under my feet and a wooden ladder in front of me that has become the most fundamental tool for my rehab.

Only a few months ago, standing and exercising at the Core Align would end with exhaustion after no more than thirty minutes. More than physical or muscle fatigue (which people always ask me about) the thing that would get me the most would be what I refer to as neurological fatigue.

It’s difficult to describe exactly what this feels like but suffice it to say that getting my body into positions that challenge my flexibility, balance, and endurance and then trying to connect to a new movement and push myself as much as possible results in my entire neurological system feeling tired. I’ve been flooding my lower body with so many signals from my brain and telling it to move using the limited pathways of my damaged spinal cord that after a while, the signals just don’t get through as efficiently or successfully as before. It’s as if you have two lanes of fast moving traffic (the signal from my brain) with cars, buses and trucks flying down the roadway and after some time, the two lanes turn into one and the one lane turns into a narrow street which only a car can pass. By the end of it, the traffic can still get through and provide the message to the other side, but it’s much slower.

Much of the work I’m doing now is finding new exercises and movements that tread the line of being so challenging that they seem nearly impossible, and then doing so many repetitions and working through them so hard that I reach neurological fatigue, and then pushing just a bit more. Through this process, the line of exhaustion keeps getting pushed further, my strength improves and I’m able to maintain the connections I’ve made in a standing position more effectively and for a longer duration.

The videos below – aside from showing my first foray into wearing spandex, a necessary item during these chilly winter mornings – indicate just how far I’ve come in the second half of 2016. In each video, I’m working on one specific aspect of the walking and gait cycle that will each contribute to being able to take steps. The shaking in my legs that sometimes occurs (which I’ve written about previously) is a clear indication of reaching that point of neurological fatigue. So without any further ado, let’s get into it:

Video 1

Working on holding my front knee bent and strong while pulling forward with the back leg also bent. It wasn’t that long ago that I was unable to hold my weight in one leg bent for any amount of time; now it’s longer and stronger and more effortless.

 

Video 2

“The Running Man” Anyone who grew up in the early 90s remembers MC Hammer, his baggy pants and the ubiquitous and memorable dance move that he made famous. Now I’m doing my own version of the Running Man by alternating lunges back and forth on both legs, trying to become faster at sending those neurological signals from my brain and telling my body to switch left and right while maintaining good alignment and body position.

 

 

Video 3

Holding a lunge, then rotating open and finding space and flexibility in my ribcage and thoracic spine. Again, only a few weeks before, I couldn’t conceive of staying in a lunge and doing any other kind of movement. It just would have been too much for my neurological system to handle; now it’s become more manageable.

 

Hopefully this gives a little taste of where I’m at and where I’m moving towards in this new year. More updates to come very soon.

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 

The Donner Party Swim

7:30AM, East end beach, Donner Lake

The morning greeted us with a radiant sun rising up over the high Sierras, its rays cutting through the perfect blue sky and shining strong, reminding us that although fall was only a couple of weeks away, its summer warmth was still in store for the day.

The swimmers gathered on the shores of Donner, surveying the water, like a sheet of glass stretching almost three miles across the length of the lake. Some, like me, had trained for this day for months, convincing themselves that the frigid water and the 6,000 feet of altitude wouldn’t get the better of them in their attempt to push their limits and accomplish what had seemed previously unfathomable. Others had decided that they would get into the swimming spirit in any way, shape, or form and be out in the open water, itself a significant challenge and accomplishment. And finally, there were all of the friends and family who would cheer and support from a kayak, paddle board or from the dry, rocky, tree lined shore.

Starting the swim, water like glass

I had been worried that the powerful and relentless winds and waves that Brita and I had swam through when we had trained here a month earlier would challenge all of us and make this feat harder, possibly even impossible for me, but thankfully Mother Nature decided to prove me wrong.

The winds were pleasantly absent, the water was refreshingly cold yet beautifully clear, and the boundless energy and positive spirit of everyone permeated through the smiles and faces of all the swimmers and supporters alike. Even the orange swim caps with our non-profit’s name and logo plastered on the side (a last minute addition to the event that arrived just in time) looked perfect countouring everyone’s heads, marking us all a part of this magical experience which had all started as a crazy idea in my head nine months earlier.

Quick break to refuel and warm up!

And so it was that after weeks and months of planning and training and visualizing how this would all go down, September 10th was upon me, and this goal within my larger goal of recovery which had consumed and motivated and driven me for so long was now about to be realized…

I could write volumes about this day, I could share way too many details about everything, about the incredible community that gathered together, all the people who volunteered their time and efforts to make it a smooth and seamless experience, of the serenity of the water as each passing stroke of my arms cut through its stillness and propelled me forward, of the astounding sense of accomplishment I felt upon the completion of swimming those five miles around the lake…

Suffice it to say that it was one of the best days of my life, one that I will remember forever, and as I think of the collective energy of that wonderful community who showed up, who took the time to drive up to the mountains and be at part of this first of all firsts, I will draw strength and passion and hope for future accomplishments and conquered objectives. And it looks like there’s a good chance that we may do this all again next year…   🙂

Little video capturing some of the awesomeness:

Two wild horses

Recently, more and more time in each session of my rehab has been dedicated to doing a variety of exercises in a standing position. This is following on the work I’ve done using the Neuro Kinetic Pilates method that I’ve learned in Maui and almost always using the Core Align, an amazing piece of Pilates equipment that allows me to push my limits in a standing position while remaining safe and secure and minimizing the risk of falling. (See this previous link to remember what I’m referring to)

By finding new ways to establish movement through my lower body, I’ve encountered a new challenge. I call it the shakes. Put simply, my legs start to shake… and shake… and shake… and just when I think I may be done, my legs shake more. The video below is a perfect example of what I’m talking about and it occurs after some 15-20 minutes of doing squats or lunges or any of the other exercises I’ve been doing recently to target my quads and improve my standing stability.

It took me a while to really understand what this was. At first, when I would tell some people experienced with SCI, they would shrug it off and say that it’s simply clonus and just another typical example of the cervical level injury that I suffered. Clonus is defined as “involuntary and rhythmic muscle contractions” and it is commonly seen in many people with spinal cord injuries. But, like the doctor testing your reflex by tapping your knee with a hammer, clonus is also a reflexive result and can be tested for and replicated by a practitioner. After doing these tests with me, the PT scratched her head in confusion and confirmed that I definitely didn’t have signs of clonus.

So what’s with the shakes?

As with nearly everything else in my path of recovery from SCI, I’ve had to figure it out myself.

To put it as simply as possible, until recently, the controlled movements that I had in my legs were all based on a single movement pattern. Since I was first able to start bridging and standing up independently with a walker, I’ve contracted my leg muscles using a specific pattern of engaging them and it’s gotten me really far.

But since I started doing some new standing exercises a few months ago that target completely different muscles, I’ve established a new pattern of movement and carved out a new neurological pathway. Muscles that haven’t really contracted or have only had minor contractions and been overpowered by other dominant muscles are finally being forced to contract. And since my spinal cord can’t manage the communication between my brain and my legs as effectively as possible, those muscles start freaking out and shaking like crazy. It often feels like I’m trying to stand on two wild horses hell-bent on roaming the countryside.

It takes an extraordinary amount of mental effort for me to keep working these new patterns and strengthening these new neurological connections but it’s a great sign that I’m able to gain new movement and work underutilized muscles that are being forced to step up to the plate and show their stuff.

While I get annoyed with the shaking since it forces me to slow down and struggle through the movements, I still take it as a positive thing. If establishing new neurological connections, gaining strength in previously underperforming muscles and finding new ways of movement mean that I have to deal with two wild horses shaking like crazy, then so be it.