Drip drip drip

On a recent warm and sunny Indian Summer day, I was sitting outside when I noticed a dripping on my shoulder. There was no way it was coming from the cloudless sky above so it quickly became apparent that the sweat was dripping off my head, naturally moisturizing my neck and shoulder.

Early on after my injury, I wrote a post about the very first beads of sweat I experienced and how significant that had been so with this recent development, I figure it’s time to reexamine this vastly under appreciated bodily system.

One of the many, and I mean MANY, secondary complications of a Spinal Cord Injury (SCI) is the deficiency in body temperature regulation. Simply put, the nerves in the spinal cord that control perspiration to various parts of the body are damaged thus leading to a decrease or inability to perspire. Similarly, when a person with a SCI gets too cold, it may be very time consuming and challenging for them to warm back up. The comfortable range of temperature for someone with a SCI is a lot more limited than it used to be. As you could imagine, this can lead to many challenging situations and unanticipated planning.

In the 18 months since I wrote that last post, my ability to handle more extreme weather has dramatically improved. I remember my feet used to turn to ice blocks at night, even in warm settings, because of the lack of circulation. Sitting in the sun for more than a few minutes was just asking for hours of suffering, as my bone dry skin wouldn’t naturally cool down the rest of my body.

I can’t say that I’m anywhere near where I’d like to be but the sweating and the temperature regulation as a whole has improved dramatically. Strangely enough (or not so strange if you know a bit about the left-right imbalance that comes with SCI, stroke, and other neurological injuries), I sweat much more out of the right side of my body than my left. I no longer have to rely on a physically intense workout to get a decent sweat. If the weather is warm enough, the moisture will come out.

I have to credit swimming as one of the contributing factors to this. Getting in a pool a couple times a week and literally forcing my body to deal with a dramatic change in external temperature, only to transition again after getting out and showering, has made me more adept at regulating my body temperature. I haven’t yet been anywhere too cold so I don’t know if I feel as confident with that, but I’m sure I’ll discover that soon.

So the next time you sweat, don’t take it for granted. That extra layer of perspiration and body odor is what’s keeping your body functioning at its peak.

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.

Update from Maui

I’ve had the incredible opportunity to come back to Maui and work with Alejandra and her staff and share her amazing perspective and approach to my recovery. I’m a little over halfway through my time here and I must admit I’ve been pretty unplugged from everything and everyone, but I finally have the time, motivation and videos/photos to give a quick update.

As a quick reminder, Alejandra has created her own unique form of therapy she calls Neurokinetic Pilates which utilizes the concept of Neuroplasticity (the belief that the brain and nervous system can repair and rewire damaged connections as a result of injury, illness, etc.) and the understanding of the lines of fascia (the tissue that surrounds and connects all of our muscles) to perform exercises and movements that mostly use Pilates principles and equipment. (I wrote a couple of posts about my last experience with her from a few months ago, if you want to reference, the links are here and here).

This time around, it was right back to work immediately after arrival from the airport. Alejandra is incredibly focused, highly motivated, and does not like to waste one second of  our time which are qualities that I share and a few of the many reasons I like working with her so much. We had barely finished greeting each other before we were back at it, analyzing what had gotten stronger with me, what was still weak and what needed to be done during my time here.

So far, the main emphasis has been on connecting and strengthening muscles that will assist me with standing and starting to take steps. Alejandra refers to these muscles as “sleepy” as they haven’t been used much and need to be reawakened. Her skill lies in the ability to come up with exercises that find that precise body position that I need to be in (and there is very little margin for error in terms of my positioning) in order to engage those muscles. If my positioning is ever so slightly off, then the ability to connect that muscle is lost. Once we’ve woken up those sleepy muscles, then it’s just a matter of strengthening that connection by repetition.

The main muscles we’ve been working on are my glutes and hamstrings – and to a lesser extent my calves – as these are the muscles that will allow me to bend my knee from standing, lift my hip and take a step. The following video/photos show some of the exercises we’ve done everyday to connect these muscles:

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Before I sign off, I have to mention Grant Korgan who has been an inspiration for me since I first got injured and was the one who told me about Alejandra and how much she had helped him with his recovery from SCI. I’ve mentioned and linked to him a few times on my blog but now I’ve had the great fortune to spend some time with him and his wife Shawna out here. Big shoutout to them, from Ale le le waterfalls on the east side of Maui.

Ale le le falls

Bridging a damaged connection

“My legs are responding well to me today.”

“C’mon quads, you’ve got enough strength in you for another few squats!”

“Usually it’s my right hip that is stronger but today my left hip is doing pretty well.”

Feeling a distinct separation between the upper and lower bodies is inevitable in Spinal Cord Injury. Obviously, the function of my hips and pelvis and legs and feet is very different from the function in my arms and chest and upper body. I recently starting noticing that my language had reflected this separation as well, that I was frequently talking about my legs as if they were a disconnected part of my body.

This was the result of progress after all. I had only recently started to feel more of a connection with my lower body because I had finally started to gain tiny traces of movement and control over parts of my legs, especially my quads. But with more progress comes greater expectations, at least for me. Since I had spent the better part of the last two or three months working on reestablishing that damaged yet still present connection to my legs by doing squats (like the ones I shared in a previous post), practicing standing with little assistance and modifying my walking exercises, I had started to expect more out of my legs.

I have written before about my belief of the importance of language and the power that words can have on healing and recovery. I’ve been conscious and careful about what words I use to describe myself or my body but somehow it took me a while to realize that referring to my legs as “they” and saying that “they’re responding well or not well to me” was falling into this trap that I had tried so desperately to avoid.

There is no “they” because it’s all “me”. And just because the signals getting through to my lower body are a bit weak doesn’t mean that they are cut off from the rest of me. So I will do my best to avoid this language misstep especially since I should be celebrating the fact that my legs are doing so much better and responding much more than they used to.

I’m always a bit hesitant to share videos of progress as I don’t ever want to give the wrong impression and lead people to think that I’m more healed than I actually am, but I decided it’s worth sharing the following two videos of my walking progress.

The main thing to notice in these videos (other than those incredibly fashionable leg braces that support my ankles) is that I’m locking out my own legs. In other words, my knees are not being held in place by the therapist (like they used to) and I’m able to initiate, establish and maintain one knee locked and stable while the other leg takes a step with assistance.

In the second video it’s harder to see the action of the knees but you can still see that the therapist is only helping me to complete the step forward. I’m doing most of the rest and if you pay attention to my right foot, you’ll see that I actually take a few steps with no assistance at all on that foot! It’s definitely sloppy, and it’s still a long ways to go, but it’s a start. I’ll take it.

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.

A milestone

Following up on my last post, where I wrote about never being satisfied of my accomplishments, yet trying to appreciate those achievements and celebrate progress, I want to share a recent milestone.

I recently started being able to do small squats using my quads, abs, and upper legs,  lying on a Total Gym machine. In this position, I have most of my body weight going through my legs, but not all of it. As you can see, my therapist is just helping to unlock my knees and bend my legs, then it’s up to me to push them back to straight. It takes me a lot of effort, as I have to use my arms to engage my lats (latissimus dorsi muscles), which engage my abs, which engage my quads. It’s strange that I can’t just tell my legs to move and that I have to use this sequence in order to get those leg muscles to contract, but I’ll take movement in the lower body, no matter how it comes.

I have to attribute much of this development to two major factors. The first is the consistent exercises I’ve been doing on an incredible technology from Germany, a standing vibration platform called the Galileo that vibrates side to side over 20 times a second, mimicking the movement of taking steps and sending a signal through my feet and up into my legs, spinal cord and brain. It has proven results in Europe and is just recently starting to become better known in the US.

The second factor is the knowledge and awareness of the body that I learned from my work with Alejandra in Maui, specifically the connective tissue in and around our muscles called fascia and the neural connections that exist within them. It was from her that I first learned about – and now fully believe in – the theory of fascia lines and how I could use certain muscles of my body that are under my control, to tap into and connect with other parts of the body in which I have less control. By constantly working on making this connection from my lats to my abs and lower body, it seems that a small signal is finally getting through. Now it’s on to working on this connection to make it stronger.

Alright, enough blabbing. Here’s the video. And now it’s on to the next achievement…  :)