Spurts and plateaus or a slow and steady climb?

How do you measure progress? How do you know how much better something is than it was one day before? There are many things that can be measured and captured quantitatively but when it comes to matters of health or the body, how do you know if you improved more this month or two months ago?

I’m constantly being asked:  “How are you doing? You noticing any improvements? What’s new with the recovery Arash?” These reasonable and seemingly straightforward questions can be nearly impossible for me to answer. On a basic level, I would assume I’m doing better that day than the previous day, but on a deeper level it’s sometimes really difficult to understand if and how much I’m improving. This is one of the most frustrating elements of dealing with such a devastating injury that has damaged me in so many ways.

One of the earliest posts I wrote on this blog was about being on A Crowded Battlefield and how overwhelming it can feel to deal with so many parts of my body being damaged and the challenges of focusing on one thing and being presented with another challenge. In the same way, when I get asked those questions, I have to do a quick analysis of about 37 different body parts and functions and assess if and how much each of those has improved and if that’s more of an improvement than the last time I checked (probably just a few hours before).

In my head, it may go something like this: “How am I doing? Well, let’s start with the obvious: still can’t move my legs. My feet dangle as limp as they have since I began the hospital adventure seven months ago. I still can’t use a fork and knife because I don’t have enough strength in my core to sit up and use both of my hands freely. Speaking of hands, funny you should ask… yes I can type and hold a glass of water and push myself around in my wheelchair (have I mentioned how much I hate my wheelchair??!!) but I can barely squeeze the shampoo out of the bottle and forget about unscrewing an unopened jar or holding anything heavier than a book in my hand. Ahh but the toe, yes alas I can still wiggle my pinky toe. But wait wasn’t that a while ago that I started to wiggle my toe and thought that it was going to snowball into other major improvements, and oh yeah, that hasn’t happened quite yet…” It goes on and on but you get the picture.

All of this brings me back to my original motivation behind this post, how do I measure progress in this post-injury/still unfamiliar body of mine? Maybe the hardest question for me to answer is whether my recovery goes in spurts and plateaus or if it’s a painfully slow and incremental process. There are moments (like today and a majority of the last couple weeks) where I do feel like I’ve undoubtedly plateaued. Some of the exercises I did today don’t feel much stronger than they did last week, or even last month. My hands are so incredibly slow to improve and there’s little I can do to expedite their growth. Standing and walking on my own seem as far away as they ever have been.

But just when it seems like I’m unimaginably stuck on this plateau, I think about one thing: my body is constantly changing. Whether I feel stronger today than I did yesterday is hard to determine but I might feel ever so slightly different than I did previously. And maybe that’s the answer, maybe improvement isn’t always obvious or clear to me, but maybe I have to accept that change is the substitute for progress. After all, if my body was actually stuck and didn’t want to get any better, why would there be so many changes, so many tingles and burns and spasms and unfamiliar sensations and sore muscles? In that case, then maybe my recovery is more of an incremental climb, a barely upward sloped line glacially moving towards the top and signifying a very slow but consistent progressive process. I suppose I still can’t make up my mind on how to measure or explain my progress so just bear with me if I stumble or mumble a bit the next time you ask me how I’m doing.

To a new year of new recovery

2012 was a bad year for me. While the first half of the year included a new job, a fantastic trip to Colombia, planning a move to a new and exciting house in SF, and some amazing hiking and camping trips with friends, everything came to a screeching halt on that fateful night in July when I suffered my Spinal Cord Injury. Paralysis is not a word I use very much to describe my condition because I hate the defeatist connotation of it, but I have to be honest about my situation after that accident: I was paralyzed, in more ways than one.

While my body was paralyzed from the chest down, so many other things had been paralyzed as well. I had been in peak physical condition before this accident and as a result of years of taking care of my body and consistently pushing myself athletically, I was in better shape as a 30-year-old than I was as a Division 1 college athlete, and sadly all of that was out the window. My new job at a renewable energy startup, and a potential springboard to a career in the field was suddenly stripped away from me. My summer plans of moving and setting up a new house, weekend camping trips in the mountains, and a vacation to Lebanon vanished right before my eyes. Everything that I knew, almost everything that made me who I am was turned on its head.

And now, almost six months after this horrendous incident, a new year is here. 2013 is the year that I walk. It’s a pretty significant task so it’s hard to call it a resolution, but the challenge of it means I will dedicate myself to it more than any resolution in the past. I will do all I can and work harder than I’ve worked to bring this to fruition. I’ve learned in the past few months about the incredible support of my community and I ask for your continued support in this next year, a year in which I plan to see all of you while standing on my own two feet. Happy new year to all.

Being short is no fun

There are MANY things I hate about being in a wheelchair. I won’t even begin to list them now… But let me share just one frustration that I’ve noticed more recently: being short.

Since I’m sitting down all the time, everyone becomes a towering, basketball player-like presence literally (not metaphorically) looking down at me. I’m sure there are plenty of shorter people out there thinking, “thanks for pointing out the obvious genius, but this is what I’ve been going through my whole life”. I admit, I’ve never really understood the plight of shortness and to be honest, I’m not exactly tall either, 5’11” to be exact. So while I’ve never exactly been an imposing presence due to my height, the shortness of sitting down is a particularly humbling experience. I must be four foot something sitting in this damn chair, a height I haven’t been since elementary school.

It sucks having to look up at people all the time. It’s no fun having to crane my neck – yes the same neck I broke two vertebra in that still doesn’t have the same range in motion – and train my eyes to look towards the clouds in order to catch the passing glance of a growing child who just hit five feet as he walks past me. Every time I greet a friend or give a hug, it bothers me so much that they have to bend down and almost fall over just to get closer to me. Having a bunch of people standing around me talking reminds me of being a little kid, thinking that the towering adults could have secret “tall” conversations that I couldn’t hear and wishing I could be part of the club.

One of the many ways in which mental strength can help in recovery from SCI is the visualization of healing and sending visual images that confirm one’s objectives to the brain. Whenever I do standing or walking exercises, the therapists are quick to bring a mirror in my view. Seeing myself standing is a positive response and will help my body remember (and recover) the sensation of being on my own two feet. You can imagine how much I enjoy the few but coveted minutes of standing I get not only for the sensation of stretching my body and bearing weight on my legs, but because it reminds me of what it feels like to stand tall, look people at eye level and rid myself of craning my neck up towards people and feeling like I’m four feet tall.

Recovery is my religion

I’ve never been a religious person. Throughout my life, I’ve generally taken a more or less scientific approach to religious belief and struggled with the notion of believing in something that can’t be proven. But ever since doctors told me that they could not predict my healing and that it would be wise to prepare never to walk again, I discovered my own religion: my 100% recovery. 

Ok I’m not trying to get into a big existential discussion on religion or God or an afterlife, so just bear with me. All I’m saying now is that my injury has taught me to accept that it’s perfectly reasonable, and commendable, to believe in something that can’t necessarily be proven. Even immediately after my injury, in the most pain I’ve ever experienced and unable to feel most of my body, I refused to believe that my body was permanently damaged. I decided right then and there, that no matter how difficult the process and how long the recovery, I would get back to my feet and walk again. This belief only gets stronger with every day that passes.

I refuse to accept defeat, I refuse to embrace a life in a chair, I refuse to consider for one second that I won’t eventually stand up and walk on my own two legs, yet I have no proof for this. As I’ve written before, there are no specific prognoses for people with Spinal Cord Injury. Doctors don’t specify that a percentage of people with my injury do recover, and how can they really, since it’s hard to define what “recovery means exactly. It can mean something different to different people. I recently overheard another SCI patient say that as long as she could use her hands and get back to work, she would be happy. That was the objective of her recovery and she would probably adjust her expectations and goals accordingly. Well, that’s NOT the case for me.

I want to run and bike and stand and sprint and hike and stroll and stand atop mountains and swim in alpine lakes and do all of the things I love. There is no holy book outlining my beliefs but this doesn’t stop me from believing wholeheartedly in the possibility, and eventual reality, that I will recover fully. Many of the therapists I encounter in the conventional, Western approach tell me the main goal of recovery from an injury like this is to become “as independent as possible”. In other words, they can’t predict that I will recover and get back to normal (another nebulous and subjective term) so they suggest I adapt to whatever my current situation is and become “as independent as possible”. Every time I hear this, it makes my skin crawl. Maybe this is like a member of the Latter Day Saints church trying to articulate the beliefs of Mormonism to a Buddhist monk who has taken a vow of silence. Or vice versa. Each person may respect the other’s right to believe what they want, but the belief systems could not be more different. Well, the same goes for me.

I honestly don’t care what doctors or anyone else tells me anymore, because I KNOW, with every drop of blood I have in my body, that I WILL walk again. My recovery is my religion, and I am the most devout, fundamentalist believer.