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.

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.

***

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.

Oh the people you’ll meet…

For those of you Dr. Seuss fans, yes the title of this post is a play on the well-known story, “Oh the places you’ll go!” and it’s so relevant to all of the people I’d like to acknowledge in this post.

It’s easy to dwell in the negativity of all of the things I cannot do right now due to my injury. Every single day, I have to actively make an effort not to go down that path, not to get trapped by those “can’t” thoughts because all they bring me are negative emotions: resentment, envy, frustration, impatience, and distress. One thing that helps me through this process is appreciating all of the incredible people that have come into my life as a result of this injury.

In the last two years, despite dealing with the most vulnerable and trying circumstances, fighting so hard for every little accomplishment, I’ve been blessed to have met individuals who have impacted me positively and consistently raised my spirits. I’ve encountered genuine, passionate and optimistic people who have shown they are as committed to helping me achieve my goals as I am.

I have trainers and therapists who prove to me every week that they believe in my objectives and they’re willing to go out of their way to learn more about my injury and how to treat it. They illustrate their passion and excitement to me all the time and they go above and beyond their responsibilities in order to match my great expectations. They read books, watch videos, question their own habits and practices and try new things with me. They do it not because they should, not because they want to humor me or pity me, but because they genuinely care.

There are friends who volunteer their time, energy and professional expertise to help fill the holes of a medical system that has abandoned me. Friends who work full-time, yet sacrifice their Sunday mornings to show up and do core strengthening exercises in my living room. Friends who meet me every week for swim sessions, helping me get stronger and fitter in the pool in ways that I can’t do on land. Friends who donate their healing abilities to give me acupuncture treatment so that my sore and overused muscles can get a much needed respite from the rigors of everyday living. Friends who are willing to travel across an ocean with me so that I can have access to the best therapy I have found. Friends who donate their time to organize fundraising events so that I can continue doing therapy. Friends who encouraged me to start writing and sharing my story with the world. Friends who – before I could drive myself – would get up early and drive me to rehab, spending the entire day waiting for me and then drive me home.

Some of these people I’ve met since my accident, others I had known previously, but my friendships with them deepened. The common thread between all of these people is that my respect and admiration for all of them has hit stratospheric heights.

They’ve shown me that in an increasingly complex world, amidst a “reality-show” generation which popularizes and promotes tremendous levels of superficiality, banal cruelty, and obnoxious self-centeredness, there are people who rise above, who show up, who unwaveringly prove that there is still plenty of kindness, compassion and selflessness to be found.

You know who you are, and I’m grateful to you all.

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.

My own little island

Let my absence from my blog end! I’ll explain later why I haven’t kept up for a while but for now, it’s time for another update.

I’ve recently come to the conclusion that to continue my effective recovery from Spinal Cord Injury (SCI), I have to remain isolated on my own little island.

I’ve probably mentioned in the past that recovery from SCI is all over the place, to say the least. Depending on a variety of factors (many of which are not well understood, no matter what the medical community says) one’s ability to regain function, get stronger and recover is largely unpredictable. I’ve also explained how one’s initial functional capabilities following the injury is largely dependent on where the injury occurred on the spinal cord (higher up towards your neck and head or lower down towards your tailbone). But here’s where the ambiguity of this injury (and its recovery) becomes prominent.

People who are injured in the same exact location on their spinal cord can have drastically different capabilities and recoveries. For example, I’ve met a few dozen other people who broke the exact same vertebra in their neck as I did, C5 and C6 in the lower neck. Each and every one of these people’s situations is different, as is their respective recovery.

Unlike more common and less severe injuries (i.e. a torn ACL, broken bone, strained muscle), there is no standard protocol for how to pursue recovery following a SCI, even for each specific level of injury. Some are left with little function in their hands while others have an iron grip; some with zero core control, others with boxer’s abs; some can wiggle a toe or lift up a leg and some can’t even feel where their lower body is in space (proprioception). As a result, the timetable for recovery is all over the place.

I bring this all up now because the desire to compare one’s injury to others’ progress and recovery is, I think, inevitable and only natural. I hear of another person with a C5/C6 injury who was able to move something or regain function at a certain time after their injury and I immediately start to compare to myself.

“Can I do that yet? What does it mean if I can or can’t?”

“I wasn’t able to do this certain thing that someone else did at a specific point after the injury, so am I doomed?”

“Well, if I wasn’t able to do this function at this time then I may never be able to.” 

“If this one specific aspect of recovery was going to happen (like it did for someone else) then it should have happened by now.” 

These are the thoughts that run through my head when I talk to anyone else with a SCI. While it’s inspiring and motivating to hear that someone was able to perform a specific task or function, it also messes with my head and threatens to endanger my confidence and resolve. That’s why I believe that comparing one’s SCI to someone else, no matter how similar they may seem, is a zero sum game.

I don’t want to stop these conversations with others about their recoveries, so what I’ve had to do is place myself on my own little island of recovery, and force myself to remain there, all by myself. It’s difficult because I want solidarity with others. I want to hear someone tell me that it’s going to happen to me because it happened to them. I want to think that my recovery is linked to others, that I can use their timetables to structure my own and manage my expectations, but that’s just not the way it’s going to be.

This recovery is a solitary one. Comparing doesn’t get me anywhere, which is why I’ll stay on my own little island, and keep working towards my goal.

***

I’ve been away from the blog for a bit because I’ve had my hands full following up on my survey and garnering momentum for a petition I started to change the way SCI is approached and dealt with. My goal is to get the word out, get as many signatures as possible to my petition so that I can get it out to multiple forms of media. If you’re interested in signing my petition, check it out below. If you have any connections to media (journalists, websites, news sources….anything at all) and you want to share them with me, I’m grateful in advance.

http://www.change.org/petitions/healthcare-providers-medical-insurance-companies-provide-the-minimum-care-to-paralyzed-individuals

Something to look forward to

It’s easy to get overwhelmed with the slow pace of recovery following my Spinal Cord Injury (SCI). I have written about this before, about how challenging it is to work SO hard every day and focus so much of my energy on healing and recovery, yet accept that the changes and improvements come oh so slowly. (But the good news is that at least the improvements HAVE been occurring…).

Patience, as it turns out, is one of the most crucial factors for anyone wanting to recover from this devastating injury, and patience, as I’ve known my whole life, is absolutely NOT a quality that I embody.

Imagine living every day with no idea how soon your body will improve (if at all) and with no assurance that you’ll ever get to achieve your objectives. Imagine going through the majority of your day working towards a goal that may not be realized for a matter of months or years. That, in a nutshell, is what I mentally encounter and struggle with every morning when I wake up, and every night before I go to sleep. It’s enough to drive someone crazy, but thankfully I’ve maintained my sanity thus far. (Note: I will do my best to warn all of you with a cautionary blog post if I ever feel like I’m going over the edge…)

One tactic that has helped me maintain my focus and patience, is to always have something to look forward to.

This is something I’ve done my whole life actually, as a way of rewarding myself for completing a task or having the patience to get through a challenge, obstacle, adverse situation, or simply, a long wait. That said, it’s taken on a new precedence now as I use this tactic all the time to keep my concentration and focus on recovery intact, without getting overwhelmed by the daunting elements of time and uncertainty.

As long as I have something fun and positive to look forward to, it gives me a reason never to give up or lose patience of my ultimate goals. I tell myself that even though I may be frustrated or impatient right now, I gotta make it through to (insert event to look forward to here), and then I’ll reassess; no giving up before that. Once that event happens, I think of the next one and the process begins again.

I’m not necessarily referring to looking forward to huge, important moments or events. Most of the time, it’s as simple as a relaxed weekend brunch with my girlfriend, an upcoming meetup with friends, a trip to the swimming pool (one of my favorite therapies), or an afternoon in the park. It doesn’t take much. The beauty of this is that when there is a bigger thing to look forward to (i.e. a trip out of town), it motivates me even more and fuels me to keep working hard until I get to that moment.

I know it seems simple or obvious to point this out, but the fact that I’ve become so conscious of the importance of this tactic means to me that it’s worth acknowledging and appreciating.

A few thoughts on independence

What does it mean to be independent? What kinds of actions or activities are essential to do ourselves in order to feel satisfied with our own abilities and without having to rely on others? What would be the functions you would have to do in order to feel like you have the most minimal sense of independence?

Often times, when strangers look at me, they see the wheelchair, they see me unwillingly sitting down amidst a sea of standing humans and they may think, “well that guy can’t walk at this moment, but otherwise he seems to be doing ok.” My friends often tell me something similar, that I don’t look like I’ve suffered a major trauma anymore, that I’ve gotten strong enough to the point where I simply look like a normal dude, who just happens to be sitting in a wheelchair.

One of the more unnoticed aspects of Spinal Cord Injury is the loss of independence. To go from being able to do nearly everything for yourself to suddenly have to rely on others for practically everything is an awful reality of this situation. Many times I’ve heard the belief that there is no such thing as full independence, that we are all dependent on others in some way. This may be true, but to have any of your independence taken away from you is incredibly humiliating, frustrating and devastating.

I absolutely hate the fact that I have to ask for help of any kind from other people, and that it happens so frequently. Before my accident, I was thrilled to be as independent as I was, to the point that one of the main reasons I chose to ride a bike as my primary form of transportation was so I wouldn’t have to rely on the potential complications of a car or the improbable and unreliable nature of public transportation. I wanted to be as self-reliant as possible. If there was anything about my life that I wasn’t satisfied with, it didn’t take me long to take initiative, come up with a plan and make a change. (Granted, I was – and still am – fortunate enough to live in a society and country where so much was available to me and I actually had the opportunities to make significant life changes…I don’t take this for granted).

Nowadays, I find myself frequently prioritizing the actions and situations that I most greatly wish I could do independently. To say that the loss of independence that has come with this injury is a blow to my pride is a massive understatement. It’s one of the things that bothers me multiple times a day, everyday. But at the same time, I’ve been able to appreciate the massive gains I’ve made while remaining focused and motivated to continue to improve.

So I want to end by acknowledging what made me write this post now. A friend, and fellow SCI survivor, recently made a short video emphasizing the next step in her quest for independence and watching it made me think about all of these questions and about how my own thoughts on independence have changed since my injury. So I’d like to encourage you to think about what it would be like if you instantly lost the ability to do most things for yourself, if you had to rely on others for those things that you used to do without any thought or consideration, and what things are most important to you, for your independence.

If you’re interested, here’s the link to the video:

http://www.youtube.com/watch?v=LTDZ7pZYqbg&feature=youtu.be

Defining myself

How do we define ourselves? By our occupations and interests? By our fundamental qualities and instincts? By the people around us and the communities that we build? Or by the events and occurrences that happen to us whether they’re in our control or not? Why am I even asking this question?

I think about this often. How I define myself is crucial to my overall attitude, outlook, and potential for recovery. As I move forward with my rehab, through various achievements and struggles, and as I encounter the many others who are somehow associated with this injury, the question I think about most often is this:

Am I defined by my injury or am I defining my injury?

One of the first posts I wrote on this blog had to do with the semantics and terminology used for those with Spinal Cord Injury (SCI), specifically the use of words like “quadriplegic  or paraplegic.” I explained how much I hated these terms and now I have a better understanding of why I still get frustrated whenever I hear them. It has to do with how I want to define myself after this injury.

When someone has cancer or HIV or Multiple Sclerosis or a stroke or a hip replacement or a number of other medical issues, they don’t start calling themselves something related to that affliction. There is no “hi I’m a cancerplegic or stroke-a-plegic” equivalent with these other situations. People instead say, I have cancer or I’ve had a stroke or I have a bad hip or whatever it may be. They are stating their medical condition as something that they have, instead of something that they are. As challenging as their respective struggles may be, they are not defining themselves by their injury.

A person may choose to define themselves in whatever way they want, as a teacher or construction worker or engineer, as a father or uncle or a Stanford alum or a tennis player or musician…. but I don’t believe that a medical condition has to be a part of that. Which brings me back to my continued frustration with SCI semantics. Why do people immediately want to define those with SCI as a quadriplegic or paraplegic? Why do most people so quickly accept this terminology and start using it?

There is a difference between saying that you suffer from quadriplegia instead of saying you are a quadriplegic. I take less issue with the former term but I refuse to use the latter. I know it may seem stubborn and trivial for me to be harping on these small differences in the way we talk, but I think it makes a world of difference.

Words matter. I truly believe that how we talk about something, specifically what words we use, has a huge impact on what we expect from it. If you repeatedly tell yourself that you’re going to have fun on your weekend trip, it means that’s what you expect, and I think it’s more likely that you will actually have fun. Conversely, if you tell yourself that something is negative and bad and you keep using those words to describe a situation (even if you’re using those words privately and not out loud), chances are that situation will prove to be negative. This relates to what is commonly known as the law of attraction. What you put out  to the world, is closely related to what you get from it.

How do I expect myself to get better and recover if I define myself by my injury? Why is Spinal Cord Injury unique from other medical problems in this regard? Is the common thinking that this injury is so debilitating and insurmountable that from day one, we need to start defining people with these funny sounding words?

I am perfectly comfortable stating that I have a Spinal Cord Injury. This is honest and accurate. But the moment I start using silly words to define myself, I do an injustice to my recovery. If you have a similar injury and are motivated and serious about getting back on your feet, I would suggest you avoid using those words and think about how you want to define yourself. I think we can all benefit from taking a moment to think about what defines us, what doesn’t, and why it matters.

Wonders of the internet

The internet really blows me away sometimes. I know I’m stating the obvious and sounding pretty cliche so let me say this instead: I can’t imagine what this injury would be like 10, 20 or 30 years ago, specifically in regards to the difference in social connectivity then vs. now.

Last week a friend posted my Al Jazeera video at Ekso Bionics on Upworthy.com, a site that I didn’t know much about previously. Within minutes, I had emails, blog comments, Facebook messages, and all kinds of communication from people all over the world who had seen the story and felt inspired enough to read my blog and to contact me personally. I was blown away. I have had a couple of big social media days since I started writing this blog but this broke all the records. The communication kept flooding in over the weekend and I’m still barely catching up to all of it.

As a result of just this recent wave of traffic, I’ve made new contacts, connected with people who have the same injury as me to swap stories, received extraordinarily generous offers of help and support from complete strangers, and read sincere, kind messages of love, positivity and encouragement from people I don’t know. I make it a frequent point on this blog to share my gratitude and always recognize those things I do have despite all of the adversity that life has thrown me with this injury, so I have to take a moment to express my thanks to everyone who has read my blog whether you’ve been following me from the beginning or just recently joining me on my path to recovery.

We live in a time where I’m fortunate enough to click a button and upload a video that instantly goes global and motivates people to send me their words of support. There are websites out there specifically to help people raise money or organize events to give themselves a better shot at improving their condition. By connecting with some of the readers and visitors of my blog, I’ve learned about cutting edge treatments for spinal cord injury (SCI), brand new devices and equipment, and read about prolific research that is paving the way for a better understanding of how the spinal cord heals. I can’t imagine how different it would be if I didn’t have access to such forms of communication and (I have to admit) I wonder if or how much my recovery would have suffered if I didn’t live in an age where so much information is so incredibly accessible.

Last year, when I was still in the hospital, I had my first conversation with Grant Korgan (a fellow survivor of SCI and an incredible and inspiring person) and the first thing he said to me as I wheezed and forced out a barely audible sentence was, “bro, there is SO much love out there, just waiting for you.” I’m feeling grateful to be able to realize this every day, and in novel and interesting ways. Thank you all for giving me so much continued inspiration and for keeping me on my path to recovery.