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

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

If you build it, will it come? And when? And how? And….

One of the most memorable movie quotes of my childhood was from “Field of Dreams” where Kevin Costner is told, “if you build it, he will come” in reference to building a baseball diamond in his cornfield which will summon his beloved baseball players from the past to come and play ball. A pretty straightforward cause and effect statement. Do this, and that will ensue.

I find myself thinking of this quote a lot recently, in the context of my recovery and dealing with all of the questions and doubt that arise and try to throw me off track. I’ve been “building it” for over a year now. This time last year is when I felt strong enough to ignore the lifestyle of adaptation and flat out laziness that the medical establishment was providing me, and took the initiative to start an aggressive routine of rehab, exercise and physical and mental hard work.

Up until my accident, I had always understood that the causal relationship between hard work and reward was reliable and relatively short-term, particularly with physical improvements (I wrote an entire post about this subject). Now, after a year of working so hard everyday, of literally channeling so much of my energy towards recovery and healing, I’m often left wondering…ok, can someone throw me a bone here? I need something to happen already!

Yes I’ve had improvements, yes my health and overall strength has improved, yes I can still wiggle my toe, yes I can sit taller, push further and continue to challenge my capabilities and improve upon them, but all of that said, I have to put this out there: I need a breakthrough.

I’m reminded of the conversations I’ve had with friends so many times about being single and wanting to find a girlfriend. Or of changing job paths and furiously job hunting and the advice we would always give each other when frustrations would hit new highs. “You’re looking too hard for it. Sometimes these things happen when we ease up on searching or expecting them, and then all of a sudden, boom! it happens.”

I have no doubt that this applies to my current situation. I want improvement badly. I want validation for all of this hard work I’ve done and I want it to be more than a toe I started wiggling nine months ago or gradual strength that I’ve built up over time. But I’m looking so hard for it! I wake up every morning and wonder if this will be the day that I’ll have that breakthrough. I’m trying not to expect it, but I expect it. And then I try to rid myself of the expecting of not expecting. And so it goes….

I wish this injury was more forgiving in this way. I wish there was a formula and even if I knew it would take a long time, I could find peace in knowing that the next breakthrough would indeed arrive. But that’s not the way this injury is. It rips you apart and takes away everything and leaves you with more doubt, uncertainty and ambiguity than you could ever imagine.

I can hear the advice from everyone already: Get rid of the expectations. Cultivate patience. Find peace with the situation. Make the most of the present moment without any consideration of the future and what it will bring. Life is too short so enjoy what you have right now and relish every moment.  I say, easier said than done. 

The funny thing is, I’ve actually been able to do all of these things but only to a certain extent. Much of my efforts recently have revolved around patience and letting go of expectations, and I’ve certainly gotten better at this. I have no choice but to continue doing these things and physically continuing to work as hard as possible but I still can’t help thinking that because I’m building it, it will come…

Traveling with SCI

This past week I did something that I hadn’t yet done since my accident. I got on a plane and traveled to a destination, wheelchair and all. I had legitimate fears and questions with the process of air travel: How long would it take to get through security? How would I get on the plane? Where would the wheelchair go? How sore and tired would I feel after hours of sitting in one place?

Having traveled for work and pleasure for a number of years and having logged hundreds of thousands of miles flying, I was well aware of the physical challenges that come with air travel, albeit for a healthy person. I remembered how good it felt to get up in the middle of a long flight and stretch my legs (not to mention do stretching and pseudo-yoga poses in the aisle amidst the strange looks and glances of the other passengers). I knew that sitting for that long didn’t bother me so much because I would often be out for a run within only a few hours of landing. How would all of this work now?

My trip was a modest but still significant 3 1/2 hour flight from San Francisco to Minneapolis to visit my girlfriend’s family, something she insisted had to happen in the warm summer months so as to avoid the harsh Minnesota climate of the other nine months of the year. It was either now or next summer, and I didn’t want to wait that long. So off we went…

In a nutshell, most things weren’t as bad as I expected. The check in, security, and pretty much everything at the airport were smooth. Boarding the plane was hilarious as I had to transfer from my wheelchair to a tiny wheelchair that could easily fit down the narrow aisle. Never mind that even my skinny ass barely fit on the seat as they strapped my arms and legs like I was in a straight jacket and tumbled me down the aisle of the empty plane before everyone else boarded.

The one thing that was as painful and frustrating as I expected was sitting in that airplane seat for the whole time without being able to move my legs around or stand up. Thankfully I was able to sit on my cushion from my wheelchair which eased the pain a bit (and raised me up in my seat so I looked like I was about seven feet tall) but at the end of the day, sitting still for so long and feeling my blood circulation struggle and my feet and ankles swell wasn’t ideal.

All in all, I’m happy I overcame this minor obstacle of air travel, especially since I had such a great reason to make this trip. I was grateful to have my girlfriend there to help me through this process and we had a great weekend together. I can’t say I’m ready for a longer flight anytime soon, but I’m looking forward to the next travel adventure.

Stone Arch Bridge - Minneapolis

A word on nutrition

I recently found an old memento from my early days in the hospital last year. Less than a week after massive spinal surgery, I was completely immobile, laying in bed and the nurse brought me my lunch tray. On it was this:

"Health" shake

I was too weak to take a deep enough breath to laugh, yet I couldn’t help but smile, cringe and awkwardly chuckle to myself. “This? Am I really meant to drink THIS?” I know picking on hospital food is an easy target as no one expects it to be tasty, and to be totally fair, most of the actual food was not as bad as I expected. There were plenty of somewhat healthy options and they gave me a choice of what to eat instead of just arbitrarily shoving microwave hamburgers and canned peaches in my face. But this was surprising to me, especially given the circumstances.

….

Health Shake 2

Once I read the ingredient list, I couldn’t help but wonder….Aren’t I in a hospital, where I’m meant to get better? Shouldn’t I be avoiding a bunch of chemicals and synthetic additives? Isn’t it counterintuitive to ingest a bunch of processed artificialness when I’m in such a volatile state and my body only needs what’s essential and healthy? And that’s when I had an epiphanic moment and the reason why I asked my mom not to throw this carton away. I wanted to hang onto it because I knew this moment now would come and I could look back at the sardonic tragedy of this glimpse into our healthcare system.

It also seemed strangely comedic that I was being given no less than five different laxatives and medicines to help move things through my body (due to the fact that I was laying in bed for ten days) yet the food I was being served contained probably a quarter of the amount of daily fiber that a normal person would need. Why not ease up on the laxatives and feed me some extra broccoli or kale? Wouldn’t a fruit smoothie replace the need for all that medicine, not to mention that it would taste a lot better than this “fortified” strangeness?

I can laugh about this now because these days, I have the fortune of being able to eat a healthy diet of my choosing, but the reality of this paradox in our healthcare system still saddens me. We make all these gains, research and develop incredible technologies that improve the health of many, yet amidst this vast knowledge, hospitals are still serving synthetic chocolate milkshakes with “health” on the front, that look like they’re straight out of the 60′s?!

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.

My 15 minutes of fame

Just a couple days before I went to Ekso Bionics for the first time to walk in their exo-skeleton, they asked me if I would mind talking to “some friendly British guys doing a short documentary” about my initial experience. A few hours later, they called me again and asked if the British guys could come to my house and ask me a few questions before I actually walked at Ekso. I agreed to everything, assuming these guys were doing some esoteric, low-profile documentary project that no one would ever see.

The friendly Brits setting up at my house

The friendly Brits setting up at my house

The British guys showed up at my house (and indeed they were very friendly), they explained that this was actually for Al Jazeera English, a very well reputed international news channel with a growing influence and a viewership in the hundreds of millions worldwide. I was STOKED. I’d been reading and watching the shows on Al Jazeera for years and was always impressed by the quality and depth of their programs. Now I was going to be a part of it??

So let me say a couple disclaimers about this show before I sign off. Firstly, in full disclosure, the fact that this happened was simple good fortune. These guys didn’t seek me out personally, it just so happened that they were here that week and I happened to be one of the people who was walking for the first time on those days they were here. The fact that they decided to profile me and build the program around my story was a nice surprise.

Secondly, while I was filming with them and answering questions, I was repeatedly asked how excited I was about the future of Ekso and how it could apply to me. My response was honest and I want to reiterate it here. I think what Ekso is doing is fantastic and prolific. They have developed incredible technology that will revolutionize the treatment of people with Spinal Cord Injury. While I’m extremely grateful and excited about using Ekso as much as possible and reaping the benefits of their product, I also have no intention of using Ekso for a long time. My goal remains the same: to stand and walk and regain functionality in my lower body without any help. I see Ekso as a wonderful tool for rehab and recovery but I hope and plan on not using it for everyday life. It’s stubborn, but that’s just me…

Alright so here it is. Feel free to spread the word:

http://www.aljazeera.com/programmes/thecure/2013/06/201362384057310764.html

Bursting through the dam walls

dam breakingImagine a dam with the force and intensity of the highly built up water pushing against its walls and practically squeaking through its cracks. It will probably begin with an initial trickle of water, peeking through the thick, protective dam walls, and dripping down the other side but it’s obvious that once that happens, there’s no turning back. After that first little trickle, the dam is going to give and the pent up power of this heretofore static water is going to explode through the walls and pour and gush out, making the dam seem like it never existed.

This is the easiest way for me to describe what I feel happening in my lower body these days. For a few weeks now, I feel like there’s more energy (the best word I can come up with) in my legs. They feel more active, more awake, as if they’re just about ready to jump up from their slumber and begin to move again. Often times, when I lie there and really concentrate and channel my attention and intention to specific parts of my legs, it feels like they are just about to obey my command and spring into action. Sometimes, I can get them to twitch and spasm a bit (movement of some kind) if I really think about it. It may be random but it’s something.

I always talk about how difficult it can be to notice change and improvement in my body. Because I’m living this recovery day to day, I can’t easily tell what’s better today compared to yesterday or last week. But when it comes to this recent feeling in my legs, there’s no denying that they feel a bit different. I don’t have any proof, and I don’t yet have any motor control in my legs (but I can still wiggle the toes in my right foot!), and there’s no way for me to predict how soon this will happen. All I know is the gut feeling I have that I think things are on the verge of changing.

Maybe this is blind optimism, maybe this is me trying to manifest my own destiny and attempt to bring about the change that I so desperately want, and maybe I have it all wrong. But I really don’t care what it may seem like. At the end of the day, these legs feel different than they used to and I think it’s only a matter of time before that water gets through the cracks of the dam, starts pouring out the other side, and eventually knocks the whole dam down and flows like it used to.

A cut in the finger and the 2% rule

A lot of people have told me over the last few months that I have inspired them. While I am flattered, honored and grateful to have any kind of positive impact on others, I want to take a moment to acknowledge a couple of inspirational words given to me from two different friends today, just a few hours apart from each other.

I’ve been struggling a bit recently with the reality that the one year anniversary of my accident is fast approaching. In the medical world, this can be significant since some doctors and practitioners say that most or all the healing after a Spinal Cord Injury happens in the first year. While I have always refused to accept this, it does weigh on me a bit and add some unnecessary stress to my recovery. On another level, it’s surreal to think that almost an entire year, a full cycle of all 12 months will have gone by since this accident turned my life upside down and launched me into the world of SCI recovery. As I try to manage these emotions, avoid being distracted by them and translate them to my everyday recovery, I am truly inspired by the seemingly random words of support I received today.

First, a friend and former colleague of mine who I’ve not seen for a few years and who lives in Europe emailed me today saying that he’d been reading my blog and he’d noticed some of my doubt and frustrations in my recent writing. He told me that he had recently suffered a badly broken leg which kept him out of commission for a few weeks and prevented him from riding his bike, something I know he is very passionate about. He said that while he was lying in bed, unable to move for weeks, he was able to truly appreciate the extent of my situation and frustration.

Now, he has begun to ride his bike again despite the excruciating pain that comes with it and wanted to tell me that he thinks of me and my recovery every time he’s on his bike, especially since he describes his injury as merely “a cut in the finger” compared to what I’m dealing with. He tells me that with his cut in the finger injury, he doesn’t think he can be a role model for me, but still sends his support and says, “I KNOW YOU WILL SUCCEED AND WIN THIS FIGHT!” Well, the reality is that his words mean a lot to me. For someone who I’ve not seen in a long time to contact me out of the blue, share his experience, and impart his words of support means a lot, especially in this moment, on this day.

The second inspirational moment of the day came just a couple hours later. My friend was driving me back from my exercise therapy session and having seen how hard I was working and how far I’ve come these last few months, he told me what I’m dubbing “the 2% rule”. His words:

“Look man, I know it probably seems like an eternity for you that you’ve been in this wheelchair but think about it like this: say you live til you’re 100. Now think that even if you have to deal with a year or two in a wheelchair but you get back on your feet, it’s only about 2% of your life that you’ll have spent in that thing. In the big scheme of things, that’s really not that bad. Keep thinking of the activities and things you love to do and how that motivation will get you better. You’ll get through this thing soon enough.”

He didn’t make a big deal out of his words, he just said them in the matter of fact way of speaking he always has, as if what he had just said was the most obvious thing in the world. It gave me great perspective to hear this. I appreciated his reasoning and it brightened up my day. Although I’m not sure if I’ll live to 100, I think he’s right. If someone asked me if it was worth it to have a couple of really rough years of adversity and struggle in exchange for being able to do what I love to do and live a generally happier life, I would say it’s a no brainer. I’ve been really caught up in the struggles and challenges of my present frustrations, but I have to think of the bigger picture and believe that if 98% of my life is spent out of a wheelchair, then I can deal with an exceptionally hard 2%.

Today, it took a couple of seemingly unrelated things to happen in a short amount of time in order to snap me out of a funk and get me back on track. I’m grateful to these two friends and to everyone who continues to motivate me and support me. Who knows where will my inspiration will come from tomorrow…