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…

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.

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.

Stand up and deliver

I’d like to share an incredible announcement with all of you. This past weekend, on the shores of beautiful Lake Tahoe, with the mountains that I grew up visiting through all my childhood in the background, and on a gorgeous late summer afternoon, I stood up on my own in a walker, and asked my amazing girlfriend Brita to marry me.

After realizing that I wasn’t joking, she shook aside the surprise and disbelief, stood next to me, eye to eye (a position we have only recently been able to enjoy) and said YES.

As all of you know, the accident that I suffered two years ago tragically changed my life and forced me to enter a world I had never expected. My career, my physical abilities, my independence and everything I had known until then were thrown into limbo with no explanation or resolution that any of it could come back to me or improve in any way possible. However, my ability to love, be loved and recognize the qualities of a truly one of a kind person were not compromised.

Brita and I (being introduced on an old-school blind date) had only met four months before my Spinal Cord Injury, which occurred while she was abroad finishing her graduate studies. When she came back to the US and saw me in the hospital, I immediately told her that I gave her full approval to move on from me, that this situation was going to be so incredibly arduous and challenging (and I didn’t even know the half of it….) that I had zero expectation or resentment towards her if she chose to let our relationship go. She had a green light….and she didn’t take it. She shook her head and emphatically and unhesitatingly told me that she wasn’t going anywhere, that she was in it for the long haul.

Throughout this time, she has been the biggest source of support for me, constantly listening to my rants and frustrations, praising my accomplishments and unequivocally maintaining the faith that I will get back on my feet, even when I question my own faith and hope. I truly believe that because of this experience, we have gotten to know each other on an entirely different level, and that’s why I had no hesitation that I wanted her to be my partner for life.

I had held a secret for the last few months that I shared with no one. I told myself that once I could stand, I would propose to this beautiful woman. Well the secret is out. It means so much to me to be able to have done this standing up, at eye level, and with the confidence that the hard work I’ve put in the last two years has paid off.

I’ll stop there as I could go on forever, but a big thanks to all of you who have supported me through this time. I’m honored to share this with you. And a huge thank you to everyone who helped me plan this special day and for our friends who were there that day, hiding in the trees and taking photos from afar and making this a truly memorable moment.

Much love and gratitude

Standing proposal

 

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