If you build it, will it come? And when? And how? And….

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One of the most memorable movie quotes of my childhood was from “Field of Dreams” where Kevin Costner is told, “if you build it, he will come” in reference to building a baseball diamond in his cornfield which will summon his beloved baseball players from the past to come and play ball. A pretty straightforward cause and effect statement. Do this, and that will ensue.

I find myself thinking of this quote a lot recently, in the context of my recovery and dealing with all of the questions and doubt that arise and try to throw me off track. I’ve been “building it” for over a year now. This time last year is when I felt strong enough to ignore the lifestyle of adaptation and flat out laziness that the medical establishment was providing me, and took the initiative to start an aggressive routine of rehab, exercise and physical and mental hard work.

Up until my accident, I had always understood that the causal relationship between hard work and reward was reliable and relatively short-term, particularly with physical improvements (I wrote an entire post about this subject). Now, after a year of working so hard everyday, of literally channeling so much of my energy towards recovery and healing, I’m often left wondering…ok, can someone throw me a bone here? I need something to happen already!

Yes I’ve had improvements, yes my health and overall strength has improved, yes I can still wiggle my toe, yes I can sit taller, push further and continue to challenge my capabilities and improve upon them, but all of that said, I have to put this out there: I need a breakthrough.

I’m reminded of the conversations I’ve had with friends so many times about being single and wanting to find a girlfriend. Or of changing job paths and furiously job hunting and the advice we would always give each other when frustrations would hit new highs. “You’re looking too hard for it. Sometimes these things happen when we ease up on searching or expecting them, and then all of a sudden, boom! it happens.”

I have no doubt that this applies to my current situation. I want improvement badly. I want validation for all of this hard work I’ve done and I want it to be more than a toe I started wiggling nine months ago or gradual strength that I’ve built up over time. But I’m looking so hard for it! I wake up every morning and wonder if this will be the day that I’ll have that breakthrough. I’m trying not to expect it, but I expect it. And then I try to rid myself of the expecting of not expecting. And so it goes….

I wish this injury was more forgiving in this way. I wish there was a formula and even if I knew it would take a long time, I could find peace in knowing that the next breakthrough would indeed arrive. But that’s not the way this injury is. It rips you apart and takes away everything and leaves you with more doubt, uncertainty and ambiguity than you could ever imagine.

I can hear the advice from everyone already: Get rid of the expectations. Cultivate patience. Find peace with the situation. Make the most of the present moment without any consideration of the future and what it will bring. Life is too short so enjoy what you have right now and relish every moment.  I say, easier said than done. 

The funny thing is, I’ve actually been able to do all of these things but only to a certain extent. Much of my efforts recently have revolved around patience and letting go of expectations, and I’ve certainly gotten better at this. I have no choice but to continue doing these things and physically continuing to work as hard as possible but I still can’t help thinking that because I’m building it, it will come…

Repetitions and rewards

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As a lifelong athlete, I’ve always understood the benefits of working hard, challenging myself physically and realizing the results of my actions in a relatively short amount of time. I remember being nine years old and amidst my attempt to play every sport under the sun, I became more interested in soccer and decided to step up my game. Like any soccer player, I inherently wanted to ignore my left foot and exclusively use my dominant right foot to dribble, pass and shoot.

One day I was kicking the ball around with my father and he told me, “Son, you don’t want to play like a one-legged chicken. You have to use your left foot and train it to be as good as your right. Only then can you be a dominant soccer player.” It wasn’t easy at first, but I heeded my dad’s advice and forced myself to use my left foot as much as my right. After some time, and many repetitions, I began to notice a difference. My left foot had improved and while it could never be as good as my right, I had engrained a physical knowledge in my soccer skills for years to come. Up until the last time I played soccer, just two days before my accident, I was a right-footed player with a strong left foot.

Another example is when I decided to train for my first triathlon a few years ago. I was a strong enough cyclist and runner but I hadn’t swam since I was a kid and I was mortified at the thought of swimming a long distance. The first time I jumped in the pool and dusted off my freestyle stroke, I lasted maybe six minutes before I was panting and wheezing like a lifelong smoker who had just sprinted a mile. I was frustrated and disbelieving that I could be in good shape yet struggle so much with this new activity. Long story short, I kept at it and although the next few times were almost as painful as the first, I slowly but steadily got better. Soon I could swim ten minutes, then twelve, then twenty and before long, I was able to stay in the pool consistently swimming laps for over forty minutes. (Full disclosure: when it came time for my triathlon, I got in the water and embarrassingly swam so crooked that I ended up way off course, and needed the officials in the boat to catch me and send me back on track. I finished the swim nearly last, but at least I wasn’t out of breath. Thankfully I made up for my poor swimming during the bike ride and the run, and finished my first triathlon in the top ten of my age group.)

Now I’m still aggressively doing rehab for many hours a week and my exercise regimens have become more intensive and (hopefully) more beneficial. But I don’t realize those physical rewards as quickly as I’m used to and that becomes extraordinarily frustrating. So much of my therapy is based on repetition. The theory is that by repeating a motion or movement over and over, we can rewire and retrain the brain and spinal cord to relearn that movement again.

Also, in order to target muscles that I don’t have motor control of, I do exercises that essentially force these muscles to engage. For example, my abs are still too weak to do a situp and the neurological connection to them is still impaired (i.e. if someone punched me in the stomach, I couldn’t flex or tighten my abs). So I do assisted situps, using my arms to pull myself up and consequently forcing my abs to contract. Yes my arms are doing most of the work at first, but over time, those abs have gotten a bit stronger and I use less and less of my arms.

Over time. That’s the problem. I’m used to seeing results quickly. I’m used to hard work and effort trumping fatigue and being able to realistically overcome physical challenges and limitations. I’m used to stories of friends who had never run long distances being able to train themselves over a few months to run a marathon. But with a Spinal Cord Injury, it’s just not the same. I can work as hard as possible (I like to think that I do) and push myself to the absolute maximum every time I’m doing an exercise, but improvement and progress shows itself so, so slowly that it’s painful. I give every rep 120%. I close my eyes and I focus and visualize and push and pull and twist and lift and grimace until my muscles burn and my brain is tired, and I still try to keep going. But ask me if or how I’ve gotten stronger in the last week or two, and I usually won’t have a good response.

To end on a positive note, as difficult as this process is, the reality is that things have gotten better and stronger, it just takes so much time. I can’t imagine what this rehab would be like if I wasn’t already an athlete or if I didn’t have a good understanding of body awareness and how to challenge myself yet remain within my limits. At least with these things going for me, I trust that my body instinctively wants to become stronger and I fully believe that my body desperately wants to walk again, because that’s what is natural and what it’s done for so long. With that trust and knowledge, I will continue to work hard and notice improvements, slow as they may be…

Compounding challenges of a cold

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A cold is no fun for anyone. I recognize that. Who wants to have any portion of their day spent dealing with sniffling, sneezing, coughing, headaches, body aches, or joint aches? But living with a Spinal Cord Injury and having a cold just feels like a cruel joke from the universe. As if things aren’t challenging enough on a daily basis, having to deal with the added stress of even more physical obstacles is debilitating.

Before my accident, I almost didn’t know the meaning of getting sick. I might get a sniffle or two here and there but I can confidently say I pretty much never got sick. The last time I had the flu I was a 6th grader. Fevers were a long forgotten memory from childhood, when there was a bittersweet thrill in staying home from school, drinking endless glasses of orange juice and eating my mother’s home remedies of vegetable soup. Strep throat, mono, bronchitis, and anything that would have had me bedridden for more than a couple hours were completely foreign to me. To be honest, I was a bit unsympathetic towards people who were consistently missing large chunks of time from school or work due to minor sickness. Well, what a difference a traumatic accident makes…

Since I got out of the hospital, I’ve made a huge effort to be as healthy as I always was, if not more, so as to avoid getting sick and compounding my daily challenges with new ones. Thanks to those efforts I’ve been fortunate to avoid any illness despite the fact that I’m constantly working with different people who are around a lot of other sick people. The streak ended yesterday when I came home exhausted, achy and nursing a stubborn cough. Today was the first day of therapy in over eight months that I missed and it’s incredibly frustrating to think that even one day of rehab and exercise has to be compromised from my recovery due to something that’s out of my control. I take my rehab very seriously, and as anyone who knows me should recall, I don’t do anything that I care about half-assed.

So why is it especially challenging to deal with illness with a SCI? I’ll provide just a couple examples. My lung capacity is much less than it used to be before my accident. I remember one night in the hospital just days after my accident when I did not sleep the entire night because I had a tiny bit of phlegm in my chest but I was too weak to cough it up. I’ve gotten some of that lung capacity back but now I have a tiny scratch in my throat and I cough and cough and can’t clear it up. So I have to do the impossible, accept it and just deal with it. The other example is just how hard it is to do anything when my shoulders are achy and sore. I use my shoulders and arms for everything so even shifting positions in bed feels like a monumental task when my shoulders feel like heavy, painful clubs hanging off of my torso.

I realize that everyone gets sick and that my pseudo invincible previous self has to swallow his pride and accept that it’s ok to be under the weather a bit and that it’s temporary. But it doesn’t relieve my frustrations at having to deal with even more obstacles in an already challenging daily life.

Spurts and plateaus or a slow and steady climb?

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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.

“As independent as possible…”

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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…”