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…

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.

Bridging to the future

There is one exercise that has been consistent with every, single practitioner that I’ve worked with since my accident, and that’s bridging. If you don’t know what it means, you’re not alone, as it’s common in yoga and some other practices but not your every day gym workout fodder like pushups, situps, lunges, etc.

Bridging involves lying flat on your back with your knees bent, feet flat on the ground, then lifting up your pelvis and torso so that you have more or less a straight line from the tops of your knees down to your shoulders. (Ok if my description was no good, feel free to jump to the video at the end of the post and come back to keep reading….). It’s not a massively complicated movement, but in its simplicity lies its importance.

I started trying to bridge shortly after my accident but I needed a lot of help. Whoever was with me had to hold my knees in a bent position, apply enough pressure to my feet to keep them from sliding, then literally left my entire torso for me (usually using straps of some kind) while I tried to visualize the movement. I would try and try and try, I would dig my elbows into the ground and attempt with all my limited might to somehow get my core up into the air and hold it there. I would think back to all the yoga classes I had gone to, in which bridging was a relatively painless task, and I would try to summon my spirit. But without any motor control of my abs, hips or legs, and with my knees flopping around from side to side, it felt like my torso weighed a thousand pounds and that lifting that mess of organs, bones and muscles would slight me forever.

Fast forward to a few days ago, following up on the work I did in Maui where I was finally able to start using my glutes and hamstrings and better engaging my back and abs, and here’s what happened:

 

I was thrilled. Especially since the therapist is giving me minimal assistance and just helping me with my knees a bit. She even lets go of me completely once I hold my pelvis up in the bridge.

There are few exercises that are so consistently emphasized by every practitioner in SCI recovery so I recognize the importance of this accomplishment. One of my therapists told me that in his experience, everyone who he knew who had recovered the ability to walk could bridge; that it was essential to the necessary movements of walking.

For me it’s validating to know that after literally thousands and thousands of struggled repetitions over the span of almost two years, I was finally able to unquestionably accomplish this movement which had seemed near impossible for so long. It is just a small step, and it’s not perfect yet, but it’s one less thing on my giant recovery to do list.

Major Progress in Maui

As I’m wrapping up my time in Maui, I want to share a quick update on the incredible progress I’ve made through my work with Alejandra. This is going to be short and sweet as I’m going to let the videos do most of the talking.

We spent a good chunk of time everyday working on a specific exercise that was meant to target my glutes, hamstrings and calf muscles, areas of my lower body that I had very little connection to prior to my trip to Maui. In addition to the variety of other exercises and movements that have all been crucial to the development of these muscles, this exercise was consistent as Alejandra felt that it was necessary for my ability to establish new cerebral mappings and create mental connections to the back side of my lower body.

We started like this, with me standing on the Core Align, a machine with wooden, ladder-like beams in front of me, foot plates that slide back and forth, and with Alejandra crouching in front of me, bracing my hips and pelvis in place, and manually moving one of my legs using her hands while I held on for dear life:

About 10 days later, we had moved on to me bracing myself solo against the Core Align, maintaining pelvis control on my own, and extending my leg back on my own! I could only kick back in a short burst, and let the foot plate pull my leg back into place. This lasted for 2-3 minutes per leg before I got fatigued:

Today, only a week since the last breakthrough, I was kicking my leg back like before, only this time, I was able to control the leg against the resistance of the foot plate and slowly bring my leg forward to resting position. No loud slamming of the foot plate, no short bursts, but more leg control both extending back and coming forward. Although one leg was certainly stronger than the other, I was able to do this for 15 minutes per leg, which means a HUGE increase in endurance.

It’s been so satisfying for me to see the progress so clearly and so quickly as it’s a true testament to the value of the work I’ve been doing. I’m just sad for it to end, but already looking forward to the next time I can come back.

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

Olympic Observations

Seven one-hundredths of a second. That’s what separated the gold and silver medal finishers in the Women’s Giant Slalom downhill skiing event in the Sochi Olympics last week. As I was watching, I was struck by the tiny margins of difference that would determine the order of finishers in this event.  To put it another way, the top 9 finishers in the event completed the course within 1.77 seconds of each other! So less than 2 seconds decided the best in the world from the mediocre skiers.

This got me thinking of the athletes and what they do in the three years and 50ish weeks when they’re not in the olympics. Obviously, there’s a tremendous amount of training involved. For some of the more popular sports, the athletes may have the luxury of training nearly full-time while for some of the other olympic sports (i.e. curling, luge), I learned that most of the athletes have full-time jobs and careers and train for their sport on the side. Either way, the amount of hours and time that each of these people puts into practice and training is admirable and remarkable.

So going back to the ski race, I couldn’t help but feel astounded that for these skiers, who are the absolute best in the world, four years of intense and daily training and thousands upon thousands of repetitions of the same movements all lead to a day where their fates are decided in mere milliseconds.

This got me thinking about my own regimen and my own olympics (of sorts) that I’m training for. Despite my lifelong athleticism and passion for an active lifestyle, I know that before my accident, it was hard for me to fathom the life of an olympic athlete, spending THAT many hours of everyday training for an event in which you may not even be selected to compete. How could you justify waking up early, staying up late, sacrificing sleep and time for other aspects of life to train for an activity while knowing that you MAY have a chance to possibly go up against the best in the world and then and only then, maybe you will be seven one-hundredths of a second fast enough to win gold??!

Since the day I got out of surgery to repair my badly broken neck, since the day when I knew that my body was damaged yet my spirit was more resilient than ever, and since I knew that the road back to my feet would be a long and arduous one, I decided that I would do everything in my power and spend as many hours a day and as many days as necessary working towards my goal.

In this regard, I share something with those olympic athletes. Our commitments to our respective goals are unquestionably similar – I would even argue that I want to walk more than any athlete wants to win gold but I guess that’s gonna be hard to prove.

And so I understand now why someone would train so much for so long despite such slim chances of reaching their goals and winning the race, and being better than everyone else out there. If you want it badly enough, then no amount of practice or training or repetitions will be too daunting to prevent you from getting there, just seven one-hundredths of a second fast enough.

Never satisfied

I’m never satisfied. It’s as simple as that, specifically in regards to my recovery.

As I write that, and I imagine as you may read it at first glance, it may seem extreme. In fact, many friends, family and readers of this blog have told me that I need to be better about acknowledging and appreciating the accomplishments that I make. As a result, I have put a lot of effort into recognizing my milestones and achievements, as small or seemingly insignificant as they may be. While this continues to be a huge challenge for me, I try to improve upon it everyday, as I know that my recovery is a long process and it’s impossible to reach the light at the end of the tunnel without appreciating those moments in between. All of that said, there’s something I really love about not being satisfied and I feel compelled to acknowledge the benefits of this stubborn, hard-headed approach that I embody.

I would attribute a great deal of my improvements and physical gains to this inherent characteristic of mine. You see, I LOVE to push myself. I always have. So when I accomplish anything, it’s natural for me to think to myself, “Well, that was good, but what’s next? How do I get even better?” When it comes to accomplishments and achievements, I can’t help but think of a cheesy yet very salient quote from some old martial arts movie where the sensei warns the student not to get overconfident because, “there is always someone better than you.” (If you know what this movie is, feel free to educate me)

It’s the same reason why I can’t stand arrogance or conceit in people. Why tell the world you’re really good at something when you always have a chance of getting better?

Ok so I realize this last bit may be misleading so let me clarify. I’m not saying that recognizing one’s accomplishments automatically equals arrogance. And I don’t think that we should all just wallow in mediocrity and never celebrate positive things. (As I’ve written about many times, I almost unwaveringly tend to see the positive in everything). But what I am saying is that by leaning to the side of under-acknowledging and downplaying my achievements, and by never feeling fully satisfied, I avoid complacency and I maintain my intense motivation and commitment to my recovery.

As I continue on this wild journey, I maintain the promise I’ve made to many people to stop and appreciate those small victories but by adhering to my stubbornness, competitiveness and will, I’ll keep my laser focus and I’ll keep going strong, always looking for the next challenge to conquer.

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.