Sharing the story of an inspiring friend

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

“As independent as possible…”

If there is one phrase I’ve heard entirely too often during my recovery it’s, “We have to get you to be as independent as possible.” This may not sound so bad at first. Why wouldn’t I want to be independent? Is there something wrong with taking a situation in which almost everything I do involves help from someone else and empowering me to do things more independently?

Now I have to provide some context so you don’t think I’m just being hyper sensitive or overly scrutinizing of a seemingly simple statement. The entire seven weeks I was in the hospital I would hear nurses, doctors and therapists say this to me, usually as a way to motivate me – as if I needed extra motivation – to learn a particular skill or maneuver. Just days after suffering the most horrendous injury that debilitated me to an unthinkable extent, I was being told and retold that my “independence” (can you sense my sarcasm??) was hinged on the need to move my body a certain way or learn a seemingly impossible task. For example, before I could achieve any basic efficiency with my hands (unable to hold a pen or cup) I was being told, almost threatened, that I should try really really hard to do a particular thing because I had to be “as independent as possible”.

On my first day of rehab, just ten days after my injury, I was asked if I had thought about what my goals were for rehabilitation. I simply responded, “I want to walk.” Once I saw the quizzical expression on the practitioner’s face, I followed up with, “Look I understand this is going to be a long road but I can’t think of anything else that would motivate me so tell me what I need to do to get me closer to my goal of walking.” More confusion on his face. It was as if I was speaking Mongolian or stating that I wanted to flap my arms, spin around three times and fly to Saturn. I think they expected me to say that my goals were something like wanting to sit up without falling over or feeding myself or rolling over in bed or strengthening my arms enough to lift my body from wheelchair to bed. The truth is I badly wanted to do all of those things! But here’s where it gets tricky, and where I start to get frustrated with the way Spinal Cord Injury (SCI) is treated in our medical system.

I learned that until 10-15 years ago, someone who suffered a SCI would stay in rehab for months at a time. But now, insurance companies recognize the exorbitant cost of keeping someone in the hospital that long, not to mention the hours of physical and occupational therapy involved, and the model has changed dramatically. Most patients in this well-known rehab facility I was in (treating SCI, stroke, brain injury, and other serious neurological injuries) averaged 2-3 weeks in rehab. I was one of the “luckier” patients because I stayed for five weeks. In fact, my discharge date from rehab was determined just three days after I arrived! Let me recap: just days removed from seven hours of spinal surgery, after arriving in an ambulance with towels and tape strapping my head down and protecting my badly damaged neck, unable to move most of my body or perform everyday functions, the medical insurance system had the magical ability to set a date to get me out of the hospital. Now it all makes sense…

Becoming “as independent as possible” had little to do with my goals or long-term recovery. Rehab was meant to be a boot camp of sorts for me to obtain the minimal strength and capabilities to go home and not be a swaying, falling, broken, soaking wet mess of humanity. In a country abundant with bogus lawsuits and fervent medical malpractice scandals, the priority of my medical insurance wasn’t to heal my body to its greatest capacity – they had experienced, knowledgable therapists and state of the art equipment after all – it was to protect their legal liability and preventing me from saying that they didn’t teach me how to move from my wheelchair or wipe my own ass.

Moreover, rehab isn’t about rehabilitating the body to what is realistic or what one may desire. It is about functionality. Everything they taught me was with the purpose of how I could function when I wasn’t within the safe, happy walls of the hospital. Every time I brought up the idea of a full recovery, I was given the same quizzical look I saw that first day of rehab. Each time I mentioned that I was going to walk, I was politely dismissed and told to focus on my task at hand. Since I left the hospital, I have been given a grand total of ONE hour a week of physical therapy. Oh wait, actually it’s technically 45 minutes but sometimes she does me the favor of staying with me for an entire 59.824 minutes before scurrying off. And each time I see her the focus continues to be on function – not rehabilitation – and I’m continuously told to learn to be (you guessed it) “as independent as possible…”

A six-month reflection

It has now been exactly six months since I suffered my Spinal Cord Injury. Six months in which everything I knew and did in my life dramatically changed, six months in which an outstanding community from near and far came to support me consistently and with arms wide open. I’m not sure exactly how I feel about this moment.

On the one hand it feels like an absolute eternity that I’ve had to live with a severe disability, unable to walk, unable to work, unable to do all the activities that contributed greatly to my mental and physical well-being, and battling everyday with the uncertainties of my injury. No one tells me if and when I will recover or how much. Doctors, physical therapists and medical practitioners seem so obsessed with liability, lawsuits and the fear of giving me false hope that they barely show excitement at my accomplishments. Of course for me, any major development (i.e. a wiggling toe) is a tiny step closer to my ultimate goal of full recovery, but all I hear from the medical establishment is to accept the current situation and “become as independent as possible”. They don’t push me to challenge my limits or boundaries, they don’t encourage me to take part in other therapies and treatments, they don’t encourage me to keep hope alive; I’ve done all this through my own will and volition. It definitely feels like I’m a lone fish swimming upstream against a relentless current that says to accept things the way they are.

On the other hand, in some ways it does feel like time has passed rather quickly. I’ve found a rhythm and schedule that work for me. No less than six days a week, I’m driving to different parts of the Bay Area to access the therapies and treatments that have contributed so much to my improvement thus far, and filled in the enormous hole that my medical insurance (and their approach) has left for me. I’m shocked by how quickly summer changed to fall and now to winter and the new year. I’m astonished that I’ve already been through so many mornings having woken up and been angry at not being able to jump out of bed and onto my feet. Or how many evenings I’ve endured with a sore butt from sitting in a chair all day.

I have purposely set my goals high, because I know that compromising how I set my goals compromises my potential accomplishments. So I will stick with my goal from the beginning, that on my birthday this August (over 13 months after my accident), I will be on my feet and walking. Everyday can and does often feel like a struggle, but if I’ve made it six months already and improved so much, I can only hope to exceed my expectations for the next six months.

Wiggle wiggle pinky toe!

I’m laying in bed, slowly waking up and adjusting my eyes to the winter sunshine as I glance out the window, when I decide to do some visualization exercises with my legs and feet. I go through the usual exercises that I’ve been doing as frequently as possible in my free time: flex my feet, bend my knee, rotate my legs in and out. Since my accident, I don’t get any movement in my lower body when I do these exercises but I’ve stubbornly and consistently kept at it. The reason why everyone – from the nurses in the ICU to my spine surgeon to my acupuncturists – has emphasized the importance of visualization is the belief that there is enormous value in sending a signal from the brain to the lower body and by thinking and trying to move those limbs, one can repair the neural pathways and reestablish that damaged connection.

This time though, something feels different. I lift myself up to sitting with my legs straight ahead of me on the bed and I throw off the covers to get a better view. Something just feels different, like there’s movement and it’s not just a spasm or reflex (which I have frequently as well). I stare at my right foot and see that my pinky toe is slowly moving in and out. To make sure this isn’t a fluke, I stop and do nothing. Pinky toe doesn’t move. I try again and there it goes, immediately responding to the signal I’m sending. This can’t be right, it’s been months and months of having my legs and feet dangle lifelessly as I’ve dragged and lifted and bumped and dropped them from place to place in this strange new world of life post-Spinal Cord Injury.

I do it again, this time to confirm that what I thought I had been seeing could actually be real. “Wiggle little toe, wiggle”. Wiggle wiggle it says, as it dances back and forth, proving to me that for the first time in almost six months, I have regained motor control of a part of my lower body.

What a development for the new year, what a way to show me that 2013 really will be a special year, one in which I hope to achieve all of my recovery objectives and kick this damn injury’s ass! It’s only one pinky toe, on only one foot and it’s still a long ways to go I’m sure before I can move my legs around like I used to, but that pinky toe gave me so much hope for the future of my recovery. To go from feeling that moving any part of my lower body is the equivalent of moving a table with my mind, to then finally seeing a flicker of hope in a tiny little pinky toe is an indescribable moment. Now, I can move this toe 10,000 times if I have to until it leads to me being able to control my other toes and then my foot and then my ankle and then my legs… My fire of recovery has been fueled, my conviction has been confirmed and my dream to reach my ultimate goal has entered into the realm of reality.

Want proof? Here it is:

Cupping Therapy and Body Muffins

Cupping therapy, known by Dr. Zhu as “muffins”

“Look, look at the muffins on your back!” exclaimed Dr. Zhu, my acupuncturist and master healing guru, as the suctioned cups on my body swelled up and turned my back into a collection of red, circular, muffin-sized lumps. Ok, I know to a lot of people it may seem kinda gross to refer to collections of blood flowing to my skin as muffins, but hey, that’s his type of humor and it doesn’t bother me one bit. In fact I snickered as Dr. Zhu said that he wouldn’t need breakfast the next day since I had provided so many muffins.

Cupping can mean a few things (get your heads out of the gutter you dirty-minded people…) but in this context, it refers to an ancient form of treatment that has been used for thousands of years in Egypt, China and the Middle East. Western/conventional medicine doesn’t officially recognize the benefits of cupping (this is a theme I’ll be coming back to frequently) but many people have enjoyed the relaxation and healing that comes with it. I was lucky enough to meet one of China’s foremost cupping experts last week as she was visiting Dr. Zhu’s office and she decided to give me a substantial treatment that she said would improve my blood circulation and relax my overused and constantly tired shoulder and back muscles. After identifying which areas had poor or obstructed bloodflow (the redder and darker, the more stagnant the blood), Dr. Wong pricked those areas with a needle, squeezed out the black, clotted blood, then put on new cups to suction and suck out more of the unhealthy blood.

Much like the acupuncture treatment I receive at Dr. Zhu, cupping is meant to work with the meridians and flow of chi in the same way as the needles used in acupuncture. The result is a painless, deeply relaxing experience that comes with red circles on your back for a few days. All hail the muffins!!