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.

So much more than just a swim

I’ve always loved pushing my physical limits.

There was a time, before my injury and the compromised state of my entire neurological system, when working towards a physical accomplishment like a marathon or a multiple day trek through the mountains was a significant accomplishment on its own. Now, with the daily challenges that come with life in a completely different body, it would seem logical that merely dealing with these challenges would be enough, that taking on anything beyond those day to day struggles would seem unreasonable.

I have to deal with how my body functions in its present state, even as I continue to recover function and to work towards my ultimate goal of getting back on my feet. But challenging that present state and pushing myself way past what I thought was possible is inevitable. It’s a part of my personality. I can’t suppress it and just because I’m dealing with a compromised body doesn’t mean that I’ve lost the desire to figure out where my limits are, and challenge myself further. I just can’t help myself…

Tomorrow, I take on the biggest single day physical challenge of my life. I will swim five miles around Donner Lake, at an altitude of 6000 feet, surrounded by the mountains that I’ve known, explored, cherished and loved for my entire life. Three years ago, I was too weak to get my head out of the water to breathe and could only use a snorkel to swim for a few minutes. Two years ago, I was able to swim in the pool, but I would have to take a break after every 50 meter lap and catch my breath. A year ago, I worked my way up to a 2.4 mile open water swim in a lake. And now, this…

At each of those moments, the thought of achieving the next accomplishment seemed nearly impossible. But my love of being in the water fueled me forward and my insatiable desire to prove that no one would set my limits for me but myself kept me motivated and committed to keep working towards my objective.

So after months and months of training, countless trips to the pool following my already intensive rehab schedule, innumerable occasions where I visualized how this would all go down, here I am, ready to take this on. I’d be lying if I said I wasn’t at least a little nervous, because I am, but more than anything I’m excited.

I know that swimming around a lake is not the same thing as walking independently, but I also know that being able to tackle and achieve this smaller goal gives me the confidence to continue working so hard towards my ultimate goal.

Donner Lake: I’m thrilled to see you tomorrow.

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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.

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.

Levels upon levels and the big building of recovery

I’ve been thinking a lot recently about buildings. I’m no real estate mogul, and certainly no engineer, but I can’t stop thinking about a building and how it’s constructed from bottom up.

I think of a building in the midst of construction and the stages of development it goes through. More specifically, I think of the levels of a building. How they get built, one on top of the other, each level relying on those below it and the tallest level, stacked up on the rest, claiming the highest height for itself, until it’s replaced by the next level and it becomes a supporting member of the entire structure, just like its brethren below.

Whenever a new level is being built on a structure, be it a 2 story house or a multistory skyscraper, there is so much that goes into making sure everything below is secure before the next level can be completed. Under construction, a new level always looks so awkward, incomplete, and bare. It’s only once it’s finished that suddenly, everything looks right, it all makes sense again and pretty quickly, it’s hard to imagine that building without that added level.

I swear I’m going somewhere with this…

For the last few months, I’ve felt like a massive level has been under construction on my building of recovery. After a spring and summer where I had noticeable, small and large achievements on a seemingly consisten basis, it’s been a….how would I say it….interesting…time recently.

There haven’t been any major breakthroughs I can hang my hat on. I don’t have any big accomplishments to match some of the developments I had in the past, developments I could feed off of and rely upon to propel myself forward.

So I keep thinking of these levels being constructed in buildings and how crucial it is for everything below to be stable, strong and 100% reliable before the next level can be built. I figure that all of the hard work I’m doing now is laying the foundation (pun fully intended) for the next breakthrough. I tell myself that my upcoming accomplishment must be a good one, since it’s needing all of this extra time and attention in the construction phase before it can be completed and realized. I guess in my building metaphor, not all levels are created equal.

Some are constructed and completed soon after the previous ones, while others are those needy, complicated, annoying projects that need all of those extra materials and time before they’re ready to be finished.

I keep telling myself that I can’t stop now, that I’ve put too much time and effort over these last few months building and strengthening everything for the next major breakthrough, and that my hard work will be realized. I’m looking forward to that imminent moment, when the awkward looking phase is over, when the next level has been built and when I can look at the new construction and wonder how it could possibly have existed any other way. Yeah, I’m ready for that moment to come…

Summertime Nostalgia

“So what do I need for backpacking this weekend? It’s going to be a shorter trip but I still need food, clothes, and supplies for three full days and nights… And next Saturday I’m going on a river float all day with friends, should be so much fun! Oh and I have to remember to borrow my roommate’s water filter for the next camping trip coming up in a couple weeks. Don’t want to be stuck in the mountains without sipping the good stuff from the streams and rivers!”

These were the typical thoughts running through my head during the summer time a couple years ago. Having spent the previous numerous summers working in the travel industry and with little free time, I had come to appreciate having the freedom to explore the many outdoors opportunities that were at my footsteps in Northern California. Yosemite, Lake Tahoe, the giant Sequoia trees, Big Sur, the coastal redwoods, and many of the gorgeous peaks of the Sierra mountains were all less than a half day’s drive from my urban life in the middle of San Francisco. I had the unique opportunity to live in a dynamic and fast-moving city and yet have access to some of the most beautiful natural scenery around; a truly fortunate situation to be in and one for which I was continuous grateful.

Fast forward to now and some things haven’t changed. My friends are still going on those backpacking trips, they’re still hard at work seeking undiscovered lakes or less traveled trails to explore and planning fun adventures. The river floats are still happening as are the epic day long bike rides that customarily include a pastry and coffee jolt or a cold beer conclusion. The roaring campfires (and the stories and laughter that come with them) are still burning strong, and the miles and miles of the fun-filled drives crisscrossing the varied topography of the California that I love so dearly are still being driven, albeit in slightly nicer cars reflecting the improved career trajectories of my thirty-something social community.

The major difference, of course, is that I’m not there.

It’s like watching a movie you’ve seen a hundred times but with one of the major actors missing. It doesn’t feel right.

To say that I’m envious of my friends’ adventures is the understatement of the century. I would give anything to be tromping through the mountains with a backpack on my shoulders, laughing and chatting and admiring the grandeur of mother nature’s best offerings. And honestly, the one thing that may be harder than not being on those adventures, is hearing about them first-hand and masking my frustration and resentment with my attempts to conjure sincere excitement.

So what’s keeping me sane this summer? Pretty simple actually. My desire to reach my shorter-term goals of recovery, some of which are looming closer on the horizon, fuel me just as much as a summer adventure would. I know that the sense of accomplishment I would receive from standing up on my own or taking a few unassisted steps in a walker would fulfill me more than these adventures did in the past. I’ve worked so hard for so long that seeing the fruits of my labor would give me immense satisfaction. While my current summer adventure is a bit more lonely, and a lot less scenic than my former escapades, the rewards are, to say the least, tantalizing, validating and worthwhile.

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.