A six-month reflection

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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!

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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:

The nerves they burn burn burn

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Less than 10 days after my injury, upon admission to inpatient rehab in a new hospital, I was on my way to get X-rays when the technician started chatting with me. Although I was running a consistent 101 degree fever and still very heavily medicated, I was able to describe him the basics of my injury. “Do you have any burning yet?” he asked me, to which I told him no with a befuddled look. He followed up and said, “I’ve had nerve damage dude, it will heal over time but wait ’til you get the burning. That’s a trip.” A few weeks later, in mid-August, I realized what he meant and started to feel the burning in my forearms.

The vertebra I had broken in my accident were in charge of the nerves that run down the forearms and through the fingertips. As a result, the first signs of those nerves healing was an intense burning sensation through my arms and fingers. It’s difficult to describe exactly, but I would say it feels like a string that’s on fire running through the length of my forearm which then branches off into my fingers. The intense burning feels like it’s just below the surface of my skin, almost like an itch, so I naturally scratch that area thinking that it will help it somehow, but it never really does much. It occurs randomly, lasts for a few minutes but sometimes much longer and since there’s little I can do about it, I have no choice but to accept it. It definitely hurts but more than anything, it’s a very strange sensation, unlike anything I’ve ever experienced.

Doctors told me this is normal and an indication that those nerves are healing and regenerating. I’ve had the burning in my arms and fingers for the last four months or so, but it occurs less frequently than it used to. Now I’ve started to feel a similar burning sensation (but not as itchy) in my abs and low back, which makes sense if you think my spinal cord is healing from the top down and now reaching those levels in my mid-body where I have about 60-70% sensation. While it’s an odd feeling, I do somewhat appreciate the burning since it’s an indication of healing. Now I try to embrace this burning and imagine that the fires burning in each millimeter of my body are happy fires that are bringing my body back to normal.