Standing in the Southwest

We all have sacred places, locations that have a strong link to our emotions and memories, that register some kind of greater meaning within us. One of my most sacred and favorite places in the world is the high desert plateaus and canyons of southern Utah and northern Arizona.

I first came to this region in 2005 when I was working as a trip leader for guests on biking and hiking tours and taking delight in seeing their faces when they experienced this truly special place, unlike any other in the world. It was always the same story, everyone signed up for the trip mostly because of the draw of the Grand Canyon. The other areas we would visit were usually more of an afterthought, an asterisk next to the statement of having seen one of the natural wonders of the world, or as us trip leaders would jokingly refer to it, “the biggest ditch in the world.”

The result was always the same. People usually hadn’t heard much about Bryce Canyon or Zion National Park (not to mention Red Canyon, the Kaibab plateau, Cedar Breaks and some of the other places we passed through), but once they saw all of it, they almost always admitted that the Grand Canyon was just a part of a truly spectacular area, and the other national parks would often cement their presence in their memories stronger than the big ditch.

I spent a good part of three summers in this area, visiting these parks over and over again yet I never got bored of the dramatic cliffs, canyons and geological formations. So it was only natural that when I found out that my fiancé had never been to any of these places, we decided to make a road trip out there. In order to make the long drive a little less painful, and to continue to explore our own state of California, we decided to throw in Death Valley National Park too, for good measure.

I wasn’t sure how I would react to visiting these places again after an eight year hiatus, and more importantly, now in a very different physical situation, where I wouldn’t be able to do the hikes I had done so many times or share my favorite peaks and viewpoints with Brita. What would it be like to visit my sacred place but without the physical ability to experience it as I remember? Was I setting myself up for disaster?

The answer, probably not surprisingly, was mixed. On the one hand, it was extremely difficult to be in beautiful and memorable locations yet constantly feel limited by where I couldn’t go, what I couldn’t see or relive again. On the other hand, I was able to share these places with Brita, to experience seeing them through her eyes and taking joy from that process. Not to mention that simply being in these places, with or without hiking and climbing up to the tops of the mountains, was soothing for my soul. At the end of the day, seeing the late afternoon sun shine on the massive, red, sandstone cliffs of Zion confirmed to me that I had made the right decision to come back.

For the last couple of months, I’ve been practicing standing up by myself, unassisted, in a walker and while it’s certainly not as effortless, long-lasting or smooth as I’d like it to be, it’s a measurable improvement from before. It was only natural then that throughout our road trip we would pull the walker out of the car, and I would rise to my feet and at least get a slightly higher view than from the wheelchair. While it wasn’t a replacement for the inability to go on a hike, and while I still long to climb back up to those peaks and descend into those canyons, it at least made it a tiny bit less painful and a whole lot more memorable. This sacred place remains sacred to me, and nothing that has happened to me physically can take that away from me.

Grand Canyon

Grand Canyon

Grand Canyon

Grand Canyon

 

 

 

 

 

 

 

 

Zion National Park

Zion National Park

Reluctant self-promotion (sigh…)

I’m not good at self-promotion. I’ve always believed that a surplus of humility is more admirable than a just a splash of arrogance or self-obsession. The entire reason I started writing this blog was to have a way of sharing the story of my recovery without having to inundate my community with personal emails or unrelenting status updates that could get lost in the shuffles of baby photos, restaurant check-ins, flight details and snapshots of meals (seemingly the majority of my Facebook newsfeed these days). Call me old school or what you will…

Well, at the behest of my closest family and friends, I’d like to (still reluctantly) share some recent developments and accomplishments .

A few months ago, a friend invited me to speak to a large conference of Silicon Valley Venture Capitalists, investors, and entrepreneurs. Not knowing exactly what I could offer or say, I decided to craft a story about my injury, my journey on the path to recovery thus far, and my marriage proposal standing up on my own two feet.

While I had always felt comfortable speaking in front of a group in a variety of contexts, having presented in professional settings many times and at social events like fundraisers with my friends and community, I had never done a TED style talk in front of 300 paying attendees, which was the setting of this event. I spent a great deal of time writing my speech, making sure to abide by the imposed time limits and keep it engaging, clear and concise. When it came time to remember the key points of my presentation, I was at a loss.

My friend, a recently published author, conference organizer, and master of integrating comedy into business who hates self-promotion as much as I do which is why I am shamelessly calling him out, told me about the Memory Palace: a millennia-old technique using visual imagery to remember long presentations, recitations, or speeches. “I promise you it will work,” he said. With only three days before my presentation, I was a bit skeptical but I trusted him and decided to give it a shot, especially since I really had no better option on the table.

I drew out my own little memory palace, abandoned any other methods for remembering my talk and off I went. My presentation went quite well, and not only did I remember everything I wanted to, I thoroughly enjoyed the experience of being onstage and sharing my story with a roomful of people.

Since then, I’ve been invited to give more speaking engagements and have continued to refine my skills each time, all while still having lots of fun doing so. Following one of my recent talks, I met a very interesting guy who after a long career in broadcasting became a speaking coach and is now the premier presentation coach in Silicon Valley. Unbeknownst to me, he is also a regular contributor to Forbes magazine and decided to write a story about the memory palace and my use of it in Forbes. I’m including the link here:

http://www.forbes.com/sites/jerryweissman/2015/04/20/how-to-remember-what-to-say-and-four-ways-to-make-it-stick/

I’m enjoying these speaking opportunities greatly especially when I find out that people are impacted by my story and able to take something away from me and apply it in their world. In a struggle as big as mine, to recover from this traumatic injury and its devastating effects, knowing that I’ve positively impacted just one person is extremely gratifying and fulfilling and I’d like to keep that going. I’m open to other opportunities so if any of you have any thoughts, suggestions or ideas, don’t be a stranger and let me know.

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…

Summertime Nostalgia

“So what do I need for backpacking this weekend? It’s going to be a shorter trip but I still need food, clothes, and supplies for three full days and nights… And next Saturday I’m going on a river float all day with friends, should be so much fun! Oh and I have to remember to borrow my roommate’s water filter for the next camping trip coming up in a couple weeks. Don’t want to be stuck in the mountains without sipping the good stuff from the streams and rivers!”

These were the typical thoughts running through my head during the summer time a couple years ago. Having spent the previous numerous summers working in the travel industry and with little free time, I had come to appreciate having the freedom to explore the many outdoors opportunities that were at my footsteps in Northern California. Yosemite, Lake Tahoe, the giant Sequoia trees, Big Sur, the coastal redwoods, and many of the gorgeous peaks of the Sierra mountains were all less than a half day’s drive from my urban life in the middle of San Francisco. I had the unique opportunity to live in a dynamic and fast-moving city and yet have access to some of the most beautiful natural scenery around; a truly fortunate situation to be in and one for which I was continuous grateful.

Fast forward to now and some things haven’t changed. My friends are still going on those backpacking trips, they’re still hard at work seeking undiscovered lakes or less traveled trails to explore and planning fun adventures. The river floats are still happening as are the epic day long bike rides that customarily include a pastry and coffee jolt or a cold beer conclusion. The roaring campfires (and the stories and laughter that come with them) are still burning strong, and the miles and miles of the fun-filled drives crisscrossing the varied topography of the California that I love so dearly are still being driven, albeit in slightly nicer cars reflecting the improved career trajectories of my thirty-something social community.

The major difference, of course, is that I’m not there.

It’s like watching a movie you’ve seen a hundred times but with one of the major actors missing. It doesn’t feel right.

To say that I’m envious of my friends’ adventures is the understatement of the century. I would give anything to be tromping through the mountains with a backpack on my shoulders, laughing and chatting and admiring the grandeur of mother nature’s best offerings. And honestly, the one thing that may be harder than not being on those adventures, is hearing about them first-hand and masking my frustration and resentment with my attempts to conjure sincere excitement.

So what’s keeping me sane this summer? Pretty simple actually. My desire to reach my shorter-term goals of recovery, some of which are looming closer on the horizon, fuel me just as much as a summer adventure would. I know that the sense of accomplishment I would receive from standing up on my own or taking a few unassisted steps in a walker would fulfill me more than these adventures did in the past. I’ve worked so hard for so long that seeing the fruits of my labor would give me immense satisfaction. While my current summer adventure is a bit more lonely, and a lot less scenic than my former escapades, the rewards are, to say the least, tantalizing, validating and worthwhile.

Two years since, and still moving forward

Yesterday, July 8th, marked two years since my Spinal Cord Injury, since everything that I knew about the world, about myself, about my body, and my life was turned upside down in an instant and launched me on this whirlwind of a journey that is recovery.

I wasn’t entirely sure if I was going to post about this strange date as its relevance is quite insignificant to me now. I remember last year, as my one year anniversary approached, I was stressed out and anxious (read my posting here if you’d like). Because the traditional thinking in our medical system says that most or all of recovery from SCI will occur in the first year or, if you’re lucky, in two, it was disheartening to think about the magnitude of that date and all that it implied. Oh how so much has changed…

Shortly after that day, I stopped counting the months since my accident. The eighth of the month, which had always been so present in my day-to-day consciousness especially as the calendar changed and a new month would arrive, became irrelevant. For the last many months, I actually completely forgot about the eighth of the month as I realized how unimportant it was. I told myself from the beginning that I was going to engage on the path to full recovery and that I would give everything I had to achieve my goals. Therefore, why should an antiquated way of thinking – an outdated medical approach that has been proven wrong repeatedly by those around me, one that quells and limits the spirit of recovery instead of encouraging it to flourish – why should that define my recovery? It shouldn’t, and it won’t.

I fully believe, as I have since the day I was injured, that with perseverance, diligence, unwavering commitment and by keeping my dream alive within me, that I can and will get back on my feet, no matter how long it takes. Also, I can’t overlook that an exceptional amount of my healing and breakthroughs have occurred only in the last few months! Maybe my spinal cord and my body did need a longer period of time to process and accept that initial trauma, but what started as the weakest me that me has ever known, has transformed into a period of continuous recovery and accomplishments.
Although it has been two very hard years, more trying, devastating, arduous, and insurmountably difficult than most anyone can imagine, I have learned tremendously during this time. I have challenged myself to an extreme I could never imagine and I have witnessed how much love surrounds me on this fight of mine. For that, I’m grateful. For the opportunity to continue on the path to realize my dream of walking and running again, I am hopeful and I continue to fight.
So thank you two year anniversary, thank you meaningless calendar date, thank you for reminding me that the human potential is not defined by 12 month cycles or doctors’ prognoses. If the spirit to heal is present, then the healing will persist. And further forward I push, looking forward to the next breakthrough and the next stage of recovery.

My own little island

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

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

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

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

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

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

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

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

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

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

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

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

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

***

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

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