The SCI Survivor Survey

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What does it mean to survive a Spinal Cord Injury (SCI)? What systems are in place to assist and support SCI survivors days, months and even years after their injuries? How do SCI survivors deal with the many life-changing challenges they face following this injury? What are those challenges and, most importantly, what can be done to address them in order to help and improve the lives of those of us who have dealt with this injury?

All of these, and many more, are the questions that the SCI Survivor Survey seeks to explore.

A little background: After my own frustrating experience with the availability (or lack thereof) of resources, support systems and options for recovery in the initial weeks and months following my accident, I decided that at some point in the future, I would want to do something to help other SCI survivors. When I heard the experiences of others, I was simultaneously horrified – I couldn’t believe how consistently various people in the medical system were discouraging and reluctant to provide hope to these people and their families – and relieved – because I learned that I wasn’t the only one out there facing these frustrations and challenges.

Recently, a couple friends and I started discussing what the biggest challenges are for SCI survivors and brainstorming the most helpful solutions. They knew my story – after all, they had been there to support me from the beginning – and I had a sense of what those challenges were based on the anecdotes I’d heard from others. But we decided that before we could explore the idea further, and in order to have a more accurate understanding of the most beneficial potential solutions, we wanted to hear from more SCI survivors. Thus, the SCI Survivor Survey was born.

Our goal now is to get as many responses as possible from anyone who has suffered a Spinal Cord Injury. The survey is purely informational and completely anonymous. All questions are optional and the responses we get will only be used to shape the direction of our efforts and guide our primary objective: to help as many SCI survivors as we can.

So in case I haven’t made it clear yet, I’m asking for your help! If you are an SCI survivor, please fill it out yourself and share it with as many other SCI survivors as you know. Otherwise, please forward, email, link, send, snail mail, tweet, carrier pigeon, make smoke signals, use morse code, talk through tin cans, and share the following link with someone has dealt with SCI. I’m grateful in advance for your help and promise to keep you updated on the progress of our efforts.

SURVEY LINK: http://bit.ly/1hf7TcC

Reflecting on my CORE Center experience

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“Sit tall, stand tall, walk tall.” Those were the words of Taylor Isaacs, the kinesiology professor/exercise therapist/all around SCI and body movement master who has helped a number of people achieve significant recovery from devastating injuries. I was honored to spend a few days last week at CORE Center working and learning from someone who takes a different approach to recovery than the traditional methods I’ve become accustomed to. It’s not easy to sum up Taylor’s approach but if I had to start with one word, it would be holistic.

Upon arriving to Southern California and creating an instantaneous bond with Taylor, Aaron Baker, Laquita and the CORE Center family (see my last post for a background of these amazing people), Taylor asked me questions. LOTS of questions. He wanted to know every detail about my accident, every detail of my regimen since then, my diet, my sleep patterns, my energy levels, my specific progress and how I had measured it, my psychological state, and as I conjured up the answers to the many questions, he took meticulous notes and responded in his easing South African accent, “brilliant, excellent, brilliant.”

I didn’t know what to expect from Taylor but within seconds of meeting him, I knew I could trust him, and that I would. After all, this guy was an expert among experts about how the body moves and had spent years applying his previous knowledge and varied experience with everyone from high level athletes to everyday people to those of us suffering from injuries like SCI. What I saw in Taylor and what made me so excited to work with him was an attitude of possibility and capability. These are words not commonly spoken to someone who has suffered a SCI; after all, we’re always being reminded of our disability and told to adapt to the circumstances, instead of trying to tackle the circumstances head on and bring about change.

The time I spent with Taylor was incredibly fruitful. After a couple days of meticulously testing different muscles and assessing my current condition, I was a bit surprised that the exercise regimen he sent me home with didn’t involve standing or leg exercises or weights or really anything complicated. It was a 20 minute daily regimen that he called Postural Reprogramming, meant to correct my posture, strengthen my abdominal and back muscles and get me sitting taller, which would lead to standing and walking taller.

Of course there are no guarantees from any therapist or practitioner and Taylor did not prognosticate anything. But what I learned from his approach was to look at the body as a whole, and understand that before I could take a step or stand up on my own, I would need to get my body into the right position for it to do what it wants to do: to move as efficiently as possible or put another way, to use the least amount of effort and energy to perform a movement. According to Taylor, “by doing this, we’re going to take those blocked neural pathways, we’re going to flood them with neural energy and turn them into neural superhighways!”

I’m including a couple of quick videos that are examples of the simple, yet challenging movements that are a part of my Postural Reprogramming regimen:

 

As I wrote about in my last post, the other main reason I was excited for this trip was to meet Aaron Baker, a true hero in my eyes and someone who consistently inspires me. I felt a kinship with Aaron the moment I met him. Of course, he has been through this injury and achieved outstanding recovery but it went beyond that. Through many hours of conversation, we were able to share our perspectives on our injuries, our lives and the world as a whole. Aaron’s mindfulness, focus and intention emanated from him and inspired me further. It was clear to me that despite his astounding recovery, this injury was still a huge part of him, and it always would be, but he had found peace, something I still have trouble doing. It was an honor to share this time with these amazing people and I’m already looking forward to my next visit to CORE Center. Until then, I’ll be reprogramming my posture…

CORE Family

Sacred places and the case against being a couch potato

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Sometimes I wonder why this injury had to happen to me, why not some couch potato who could just as easily sit on a sofa (or now, a wheelchair), and spend hours watching TV or playing video games, and having little to no concern about the weather outside or their natural surroundings. My situation would probably be easier if I were like this. Being a sedentary, physically unmotivated person who wanted nothing more than to be passively entertained would translate quite well to the common prognosis of life post-Spinal Cord Injury: sit on your ass, get around in a wheelchair, abandon hope of regaining who you were prior to injury, gain weight, and do your best to deal with your “new” life. But as I’ve stated many times, I am the furthest thing from this type of person and so I have to accept that while the path of NOT being a couch potato may be extraordinarily harder for my recovery (I would think a couch potato may not even bother to try to recover), the potential reward of rediscovering any of the active things that I used to do is monumental and motivating to me to continue my fight.

I believe we all have places that are sacred to us, and many of my sacred places are  associated with nature, the outdoors and the absolute sense of serenity, joy and fulfillment I get from visiting these places again and again. Over the last two weekends I had the pleasure of going to two of my sacred places: Yosemite National Park and the coastal areas of Marin County, north of San Francisco. On both occasions, generous friends opened up their homes and I was fortunate enough to share these experiences with incredible friends who treated me as I always had been, and recognized and respected how important these places were to me.

My earliest memories of Yosemite are as a child, grumblingly pitching a tent during a pouring thunderstorm, hiking underneath craggy peaks and swimming in its cold yet refreshing rivers, streams and lakes. I have explored many different corners of the park, which in more recent years has come in the form of finding solace from the large crowds by backpacking through its less-traveled trails and finding its more hidden treasures. I was nervous about coming back to this sacred place without the ability to hike and move as I used to. Honestly, I had avoided a trip to Yosemite since my accident specifically because I didn’t want my memories and nostalgia to overwhelm and upset me.

By contrast, I had spent a bit of time in the gorgeous coastal areas of Marin County as a teenager, but my deep appreciation for this sacred place developed in the last few years through my frequent road bike rides through this area. Living in San Francisco meant that I would often hop on my bike, cross the majestic Golden Gate Bridge and escape from the city to surround myself with coastal redwoods, rocky beaches and winding hilltop roads.

To be honest, it was excruciating at times to be in these sacred places in a wheelchair, unable to stand up or walk or go anywhere with uneven terrain. It pained me to conjure cherished memories of past experiences and to wonder if and when I would ever do those things again on my feet. I would be lying if I didn’t admit this, but to my surprise, I discovered that despite my physical limitations, it was fantastic to be in these places again. Those ethereal granite cliffs of Yosemite Valley haven’t changed much in hundreds of thousands of years, and there’s no reason for me not to continue to appreciate their beauty now. Sitting in the sun with friends, eating freshly shucked oysters and enjoying a beautiful afternoon was a bit more tedious because I was stuck in a wheelchair, but it wasn’t enough to take away from savoring that moment. I even figured out a way to lean my knees against a picnic table and stand up with the help of a couple friends.

The mixture of emotions that comes with going back to my sacred places, albeit in a very different physical state, is a difficult challenge, but at least now I’ve reopened the door to enjoying them and can use fresher memories of these places to fuel my continued recovery.

Getting towed by two black labs
Getting towed by two black labs
Standing up!
Standing up!

Sharing the story of an inspiring friend

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I want to take a moment and give a shout out to a recent friend and his outstanding achievements after suffering a Spinal Cord Injury of his own. I was introduced to Grant Korgan just weeks after my accident while I was still in rehab at the hospital and I remember talking to him and instantly feeling better knowing that someone else out there could possibly understand what I was going through. “You have a new best friend bro, feel free to call me anytime you want” is what he told me. Grant suffered his accident almost three years ago and was given the same uninspiring prognoses from his doctors about his chances of recovery.

Despite the challenges he faced, he worked his way out of his wheelchair, became much stronger, started walking with canes, and became the first adaptive athlete to hand-ski to the South Pole in Antarctica. This effort was chronicled by a documentary film crew and Grant has also written an inspiring book about the first year of his life after his accident entitled, “Two Feet Back.” I read his book and highly recommend it to anyone interested in learning of a person who has approached his recovery with unwavering optimism and positivity.

I want to dedicate this post to sharing Grant’s talk at a recent TEDx event. Check out his video and if you only have a few minutes, feel free to skip to 16:08 and watch and listen to the song about his story and recovery. I am continuously inspired by him and discover so many similarities to my own recovery. Madluv to you Grant

TEDx Grant Korgan: The Goosebumps of Life

A Fantastic Fundraiser

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Last Tuesday, December 11th, I had the great fortune of being surrounded with an amazing community of friends who came to support me and my recovery at an event in San Francisco. Many days later, I’m still riding the wave of incredible energy and love that I witnessed that evening and want to express how significant this was for me.

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When the idea to host a fundraiser event came up, my expectations were reasonably subdued. I figured we would round up a few friends, raffle off a couple t-shirts or small prizes and call it a night. Thanks to an outstanding few friends who donated considerable time and energy in the weeks leading up to the big night, we were able to put on a well-organized, smooth and fun event which a few people called, “The hottest party in San Francisco tonight”. And why not?? We had plenty of beer and wine flowing, enough kabobs, sandwiches and snacks to feed the almost 300 people who attended, and over 70 incredible raffle and auction prizes. And um… so much for having t-shirts for prizes. How about a six night stay at a hotel in Jackson, Wyoming, or a day cruise on SF bay for 10 people on a private boat, or professional quality photography and artwork, or a brand new bike, or free yoga or acupuncture sessions, or gift baskets and prizes from a variety of local businesses…

I am thrilled – yet not very surprised – that we were able to have such a successful event and that so many pieces came together to make a truly special evening, but I am most thankful and grateful to all the smiles and hugs and support that I received that night. Although I completely lost my voice from the many conversations I had (and despite how short I felt sitting in a wheelchair around hundreds of people standing above and around me), my commitment to recovery was renewed and confirmed by every person I met throughout the night. I know there will continue to be hard times as I go forth in my recovery, but I know I have the foundation of so much positivity and good energy holding me up that I feel stronger than ever. Thank you to everyone who contributed in any way to make this such an incredible night.

Welcome!

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Welcome to my blog! Bear with me as this is the first time I’ve done this so I’ll hopefully be updating and improving this blog over time but for now, I wanted to put something out there for you all to see.

I decided to have this blog and share my thoughts and experiences publicly for a few reasons. First, I don’t want to bombard people with numerous long emails and I figure this way you can learn about my status as you like. Second, I want to outline this process I’ve undergone, to highlight milestones and achievements, describe challenges and setbacks, and chronologically capture steps of my recovery. Third, I want to discuss and share the differences and similarities of the conventional medical approach (what my medical insurance told me to do) and alternative approaches, ideas and treatment styles that I have undertaken. And last but certainly not least, I hope to be one small resource for other SCI patients and shed some light on the decisions I’ve made and the impact they’ve had on my recovery.

I welcome your thoughts, suggestions and feedback, so please feel free to leave a message or shoot me an email.