Bursting through the dam walls

dam breakingImagine a dam with the force and intensity of the highly built up water pushing against its walls and practically squeaking through its cracks. It will probably begin with an initial trickle of water, peeking through the thick, protective dam walls, and dripping down the other side but it’s obvious that once that happens, there’s no turning back. After that first little trickle, the dam is going to give and the pent up power of this heretofore static water is going to explode through the walls and pour and gush out, making the dam seem like it never existed.

This is the easiest way for me to describe what I feel happening in my lower body these days. For a few weeks now, I feel like there’s more energy (the best word I can come up with) in my legs. They feel more active, more awake, as if they’re just about ready to jump up from their slumber and begin to move again. Often times, when I lie there and really concentrate and channel my attention and intention to specific parts of my legs, it feels like they are just about to obey my command and spring into action. Sometimes, I can get them to twitch and spasm a bit (movement of some kind) if I really think about it. It may be random but it’s something.

I always talk about how difficult it can be to notice change and improvement in my body. Because I’m living this recovery day to day, I can’t easily tell what’s better today compared to yesterday or last week. But when it comes to this recent feeling in my legs, there’s no denying that they feel a bit different. I don’t have any proof, and I don’t yet have any motor control in my legs (but I can still wiggle the toes in my right foot!), and there’s no way for me to predict how soon this will happen. All I know is the gut feeling I have that I think things are on the verge of changing.

Maybe this is blind optimism, maybe this is me trying to manifest my own destiny and attempt to bring about the change that I so desperately want, and maybe I have it all wrong. But I really don’t care what it may seem like. At the end of the day, these legs feel different than they used to and I think it’s only a matter of time before that water gets through the cracks of the dam, starts pouring out the other side, and eventually knocks the whole dam down and flows like it used to.

A cut in the finger and the 2% rule

A lot of people have told me over the last few months that I have inspired them. While I am flattered, honored and grateful to have any kind of positive impact on others, I want to take a moment to acknowledge a couple of inspirational words given to me from two different friends today, just a few hours apart from each other.

I’ve been struggling a bit recently with the reality that the one year anniversary of my accident is fast approaching. In the medical world, this can be significant since some doctors and practitioners say that most or all the healing after a Spinal Cord Injury happens in the first year. While I have always refused to accept this, it does weigh on me a bit and add some unnecessary stress to my recovery. On another level, it’s surreal to think that almost an entire year, a full cycle of all 12 months will have gone by since this accident turned my life upside down and launched me into the world of SCI recovery. As I try to manage these emotions, avoid being distracted by them and translate them to my everyday recovery, I am truly inspired by the seemingly random words of support I received today.

First, a friend and former colleague of mine who I’ve not seen for a few years and who lives in Europe emailed me today saying that he’d been reading my blog and he’d noticed some of my doubt and frustrations in my recent writing. He told me that he had recently suffered a badly broken leg which kept him out of commission for a few weeks and prevented him from riding his bike, something I know he is very passionate about. He said that while he was lying in bed, unable to move for weeks, he was able to truly appreciate the extent of my situation and frustration.

Now, he has begun to ride his bike again despite the excruciating pain that comes with it and wanted to tell me that he thinks of me and my recovery every time he’s on his bike, especially since he describes his injury as merely “a cut in the finger” compared to what I’m dealing with. He tells me that with his cut in the finger injury, he doesn’t think he can be a role model for me, but still sends his support and says, “I KNOW YOU WILL SUCCEED AND WIN THIS FIGHT!” Well, the reality is that his words mean a lot to me. For someone who I’ve not seen in a long time to contact me out of the blue, share his experience, and impart his words of support means a lot, especially in this moment, on this day.

The second inspirational moment of the day came just a couple hours later. My friend was driving me back from my exercise therapy session and having seen how hard I was working and how far I’ve come these last few months, he told me what I’m dubbing “the 2% rule”. His words:

“Look man, I know it probably seems like an eternity for you that you’ve been in this wheelchair but think about it like this: say you live til you’re 100. Now think that even if you have to deal with a year or two in a wheelchair but you get back on your feet, it’s only about 2% of your life that you’ll have spent in that thing. In the big scheme of things, that’s really not that bad. Keep thinking of the activities and things you love to do and how that motivation will get you better. You’ll get through this thing soon enough.”

He didn’t make a big deal out of his words, he just said them in the matter of fact way of speaking he always has, as if what he had just said was the most obvious thing in the world. It gave me great perspective to hear this. I appreciated his reasoning and it brightened up my day. Although I’m not sure if I’ll live to 100, I think he’s right. If someone asked me if it was worth it to have a couple of really rough years of adversity and struggle in exchange for being able to do what I love to do and live a generally happier life, I would say it’s a no brainer. I’ve been really caught up in the struggles and challenges of my present frustrations, but I have to think of the bigger picture and believe that if 98% of my life is spent out of a wheelchair, then I can deal with an exceptionally hard 2%.

Today, it took a couple of seemingly unrelated things to happen in a short amount of time in order to snap me out of a funk and get me back on track. I’m grateful to these two friends and to everyone who continues to motivate me and support me. Who knows where will my inspiration will come from tomorrow…

Repetitions and rewards

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…

Ekso-skeleton walk

Step into a suit, strap in, stand up, and walk. That’s exactly what I did last week for the first time. I had heard a lot about the exoskeleton made by Ekso Bionics, especially from a number of other people with Spinal Cord Injuries, and I had been interested in trying it out for myself. Finally, after many weeks, it was time for me to try one of the most novel and innovative forms of treatment for SCI.

Like so many cutting edge technology companies, and fortunately for me, Ekso Bionics is based in the Bay Area, just 15 minutes from my home, in a spacious, futuristic, movie-set-like warehouse where they do everything from design to marketing to engineering to manufacture of this incredible product. Upon entering Ekso, I had the immediate sense of being surrounded by scientific intelligence, and the feeling that big things were happening here. You’re welcome to check out their website to learn specifics but the very brief overview of Ekso is that they’re basically split into developing two types of Ekso Bionic Suits: one for rehabilitating people with SCI and other disabilities and the other for military purposes (an able-bodied person being able to wear the suit and carry hundreds of pounds of weight on their body). Both purposes serve to advance their mission of developing “the most forward-thinking and innovative solutions for people looking to augment human mobility and capability.”

After conducting an evaluation of my physical condition, including precise measurements of my legs, hips and feet, it was time to try it out. It only took a few seconds to strap me in before I was standing upright in the most effortless way I had experienced since my accident. Usually, when I do standing or walking exercises, I have to support much of my weight on my arms and shoulders but with Ekso, this wasn’t the case. I felt upright and fully supported, yet agile and light.

So how does it work??? There are no electrodes or implants or anything that complicated. Basically, to take a step, I put my weight into one leg and lean in that direction and once I pass that “sweet spot” where my balance has shifted but I’m not falling or swaying, the opposite leg will take a step. The suit has sensors in my feet recognizing how much weight is in each foot, so to step again, I lean on the opposite leg and again, as soon as I pass that threshold where enough weight is off the back leg, it takes a step. I started with a walker in front of me to support me but quickly moved on to using crutches which was a bit more tricky at first but easier once I got the hang of it. It didn’t take long to figure it out, so much so that after a few laps, I asked the guys when I could start sprinting with the suit.  🙂

After more than an hour of standing and over twenty minutes of walking, I barely felt fatigued. Post Ekso statsWhile the process of walking feels a bit unnatural (you really have to lean pretty far in one direction to make the opposite leg to take a step), the ease and smoothness of walking with Ekso is an unmatched feeling. Thankfully, as an Ekso test-pilot, I will be able to use the suit again and help them as they continue to develop and improve their product.

Much like another incredible piece of equipment that I used recently (the lokomat), Ekso is a marvel of human engineering, designed so precisely and carefully that it will undoubtedly be a pioneer in the field of SCI rehab. I’m thrilled to be a part of the Ekso community and will post and update my progress as I continue to work with them and walk in the suit.

Scared of stairs

One inch. That’s all it takes to stop me in my tracks, bring my wheelchair to an instant halt, and fling me forward and potentially face plant on the ground. In those first few weeks after my accident, while I was still in the hospital and learning how to maneuver myself in this rolling contraption that I hate so much, going over the smallest bump or gap would send shooting pain through my neck and spine. Just getting in and out of the elevator or the front door of the hospital to get some fresh air was an adventure as I could feel every jolt through my entire body and I would beg whoever was helping me to encounter these tiny bumps or rises as if I were off-roading over huge dirt mounds.

I’ve come a long way since then with my wheelchair as I no longer have much pain, but as I’ve gotten stronger and more able to go to new places, I’ve become more aware of where I walk…I mean….roll. Considering how much I already hate being shorter than everyone around me because I’m always sitting (see a previous post), it’s frustrating to  have to always keep my gaze at the ground and be on guard for any change in surface that will maintain my safety.

As a healthy and active person before my accident, I never thought twice about the entrances to homes, stores or restaurants. I lived on the top floor of an old San Francisco Victorian, with a bunch of stairs and no elevator. Many of my favorite restaurants and bars were situated at the top or bottom of a narrow flight of stairs. In a city where space is scarce and any kind of real estate costs a small fortune, there are few residences that are accommodating to someone in a wheelchair. As a result, to this day I can rarely visit my friends in their apartments or homes. “We’d love to have you over but we’re not sure if the stairs are doable” is something I hear frequently. To my friends’ credit, I have been able to bypass some seemingly sketchy entrances with some creative use of plywood ramps combined with some strong bodies pushing, pulling or even carrying me Cleopatra style.

I constantly fantasize about how monumental it will be for me to just make that first transition out of this wheelchair. Even if I have to use a walker or crutches, having the ability to go up a stair or two will open so many doors for me (literally and figuratively). I’m sick of always worrying about the smallest bump in the sidewalk or an elevated driveway or the unexpected stair and thinking how exactly my wheelchair and body would travel through the air if I were to encounter these foes without the utmost caution.

It is the biggest understatement when I say I can’t wait until I begin to get out of the wheelchair, which I refer to as my savior and worst enemy. I know I need it for now but I like to think that my hatred for it, combined with my love and driving desire to stand and walk, will lead to an imminent change in how I get around, and will lessen the feeling of being scared of stairs.

Another dose of perspective: handling my hands

Hand diagramWe all take our hands for granted. There. I said it, and I really mean it.

I have written about a lot of my different physical and mental challenges here, but I have yet to dedicate an entire post (or more) to one of the most devastating aspects of my Spinal Cord Injury: my hands. Take a moment and just think of the small, fine movements you use your hands for throughout the day. Examples:

Unscrewing a cap of toothpaste; splashing water on your face, squeezing shampoo into your hands, buttoning your shirt, zipping a jacket, tying your shoelaces, fastening your belt,  unscrewing a jar, peeling open that annoying thin aluminum wrapper that always rips on a small container of yogurt, pouring milk into your coffee, eating with utensils in both hands, grabbing your keys, locking the door, turning on the ignition in your car, pulling a credit card out of your wallet, handling cash, signing a receipt, and on and on and on… 

Every single one of the functions and movements I described above are significantly impaired for me because of weakness in my hands and fingers. Some of the things I listed are still nearly impossible for me (squeezing shampoo), a few have become easier and more routine (signing a receipt, unscrewing toothpaste), and some I can do decently, just more slowly and weakly than normal (tying my shoelaces, buttoning my shirt).

I have become entirely accustomed to not trusting my hands. I am constantly dropping things on the ground. I still can’t hold my laptop or a heavy book with one hand. I am patiently waiting for the day that I can hold a plate of food comfortably without feeling like I’m lifting a 100 pound dumbbell. Opening packaging or a wrapper on everything from a pack of gum to an envelope is still a massive challenge and I’m stuck asking for someone’s help much more frequently than I would ideally like. I have to sleep with a bulky splint on my hand to help my fingers extend and open and feel more limber the next day.

Now I’ve only discussed basic yet necessary tasks and movements for everyday function without even mentioning maybe the most disturbing and frustrating aspect of my injury and its effect on my hands. Put aside for a moment the obvious challenges of someone outdoorsy and active like me who cannot walk or run or hike or do any of the active things I love to do. Let’s accept how excruciating it is for me to be cooped up inside on a nice day when I’d normally be riding my bike or playing soccer in the park. The two “indoor” activities that I enjoy the most, activities that are just as important in defining who I am and what I love to with my time – playing guitar and cooking – have been taken away from me. When I tell people that this is the most humiliating and debilitating injury I can think of because of the number of ways it affects me, THIS is what I mean. Cooking a big dinner for friends or having a lively jam session were fundamental elements of my personality, and now I can’t even do these. This is why it feels like almost my entire identity has been crushed by my Spinal Cord Injury.

I have zero intention of turning my blog into a whinefest to complain to the world about my problems, so I’ll express the entire motivation and reason I’m writing this rant: I am extraordinarily lucky to have the function I have. Even I, in this state of constant frustration and recovery, feel incredibly fortunate for the strength and abilities I DO have in my hands.

Breaking my C5 and C6 vertebrae in my neck would typically mean that I have limited range of movement in my shoulders, weak biceps, floppy wrists with almost no strength to bend or extend them, little to no function in my fingers and hands, and significantly weakened triceps. Nerves to handsMost of the other people I’ve met with my injury have had a much bigger struggle with their hand function. It’s one of the first things other SCI patients quickly recognize when they see me. “Dude, you’re a C5?? Your hands look pretty good…” No one knows exactly why my hands were spared some of the damage and it just continues to prove how mysterious and misunderstood this injury is.

Now if this isn’t amazing perspective, I don’t know what is. Every time I want to complain about not being able to strum my guitar, write music or chop onions as quickly and ably as I used to, I think of how much worse it could be and how lucky I am to at least have the function that I do have in my hands. I admit, I work extremely hard on my hands, at least 2-3 hours a day doing various stretches and exercises (like typing) that have helped me tremendously. To finish on a positive note, I want to recognize a few of the small accomplishments with my hands in the last few months: I can type at almost the same speed I used to, flossing is effortless, I can hold my chef knife and chop much better than before, and I’m trying to fulfill my musical desire by learning the piano. Here’s to continued improvement with my hands, to us all recognizing how amazing our hands are and not to take them for granted.

Utah Rehab Update – Water Therapy

I wanted to send out another update from my therapy at Neuroworx in Utah. I’ve been interested in doing water therapy in a pool for quite some time now as I’ve heard from other SCI patients of how much they enjoy it and how much it’s helped them. While it’s possible to jump into a normal pool, the ideal therapeutic water therapy pools have  the following elements:

  • A small pool (about the size of two hot tubs) that is relatively shallow (4-5 feet deep)
  • Jets for resistance and swimming exercises
  • Very warm temperature – almost like a hot tub since SCI patients have a hard time regulating body temperature, a traditional pool may be too cold
  • Floating devices and exercise equipment that is useful in the pool
  • Underwater parallel bars and treadmill
  • Physical Therapists and/or trained staff

Interestingly enough, I found a place not far from my home in California that has a therapeutic pool with all of these features but my pathetic excuse for health insurance has denied me for this therapy, even though my Rehab doctor and my PT referred me for it and said it would have many benefits for my recovery. My insurance states that because I can do land therapy (which they’re not providing or paying for either), there is “no medical need” for water therapy. As frustrating as that had been, I was thrilled when I found out that I was going to be able to experience water therapy during my time in Utah.

I ended up having water therapy every other day and I really enjoyed it. There is something fantastic about taking gravity out of the picture and feeling the weightlessness of my legs in the water. I did some exercises targeting my abs and core that were similar to movements that I would do on land, but the water allowed me to push my limits a bit more and not worry about falling face first into the ground.

Abdominal/core exercises – these are much harder to do for me than it may seem due to my weak abs. Also, notice the screen in front of me showing the underwater camera shots of my legs:

I also spent about 15 minutes just swimming against the jets in order to get a cardio workout and have full body exercise:

I hope this gives a good sense of some of the different therapies I’ve been doing and why I’m so grateful to have had the opportunity to do all of these things under one roof and under the eye of an incredibly talented and knowledgeable staff. My time at Neuroworx was very well spent and I’m excited about taking the lessons I learned back home and applying them to my continuing rehab.

A much needed change of scenery

After months of the same routine, of going to the same places on the same days and feeling trapped in redundancy and “Groundhog Day” syndrome (you’ll have to see the movie if you don’t know what I’m referring to here), I decided to shake things up a bit. I’ve come to Salt Lake City, Utah for two weeks to try a different rehab center and to see what kinds of ideas, practices and exercises I can learn from their experienced team of therapists and SCI professionals.

I have to explain how important this change is for me. For years, I travelled frequently all around the world, mostly for work but also for pleasure and before I could get too bored or accustomed to any one place, I was on a plane to a different destination. Even when I was living in one place and leading a less itinerant lifestyle, I was constantly taking weekend trips to the mountains, camping, hiking and exploring the natural outdoors which I love so dearly. So adding to the long list of physical challenges from my accident is the challenge of routine and boredom from doing the same thing over and over.

Over the last few months, as so many of my friends travelled to different destinations and shared their excitement either directly to me or indirectly through Facebook and social media, I had to quietly hear them and fight the envy and jealousy I felt and battle the frustration of not being able to travel myself. In fact, before my accident, I had booked a trip to Lebanon and I’d tentatively scheduled a hiking trip to Patagonia. All of that went out the window. Now, while Utah isn’t a new place for me (I used to work here quite a bit), it’s the break from routine that I’ve been waiting for and I’ve come to Neuroworx to make the most of my experience.

Neuroworx is a non-profit founded by a man who suffered a bad cervical Spinal Cord Injury himself. He was a practicing doctor, with a family and a successful career and, as I know from my own experience, his entire life turned upside down in one instance. (You can read his story here, very inspirational) Although he had trampolines his entire life and had used them for years, his accident occurred on his trampoline in his own backyard. Being a physician, he knew almost immediately that he had suffered a Spinal Cord Injury and so began his own recovery.

Being told he would never walk again (sound familiar??) he teamed up with an incredible physical therapist who worked with him and helped him recover. Now, while he still deals with many of the challenges of SCI, he is walking and has recovered tremendously. That physical therapist became his partner and she is now the head PT at Neuroworx, coordinating the regimens of the many patients who come through their doors.

I’m excited for this change and will try to post a couple updates from here. Now it’s time to enjoy the mountains and the break from routine.

Flash Forwards

I’m boarding a train in a foreign country. As I scan my ticket to confirm my destination and its tricky spelling, I sling my backpack over my shoulder and step high up onto the train as it starts to rumble out of the station. 

I’m walking through my old San Francisco neighborhood towards the tall trees of Golden Gate Park swaying in the gentle but persistent coastal breeze. I see my old neighbor on his way to work and wave at him as he walks on by and greets me from across the street. “Been a WHILE since I seen you man! How ya doing?”

I swing open the door to the restaurant and hurry excitedly up the narrow stairs. I enter into the dining room and see my friends gathered towards the back, ready for the birthday celebration. I can’t help but notice the tantalizing cocktails neatly handwritten on the chalkboard behind the bar. I decide that after months and months of preserving my recuperating nerve cells by avoiding alcohol, it’s time to order a drink…

We all know what flashbacks are, memories from the past of a specific moment that we remember clearly that are brought back into present consciousness. Similar to flashbacks, I have “flash forwards” that I’m sharing here now. Much like flashbacks (which we remember for certain reasons), my flash forwards are complex, rich in detail and as vivid as any memory. Thinking of them places me in those exact moments, my senses come alive with what I’m surrounded with and I feel as though I am experiencing that moment in real time. My smell (the sense that is most linked with memory) is heightened with the scents that I take in and I can realize the absolute realness of my flash forward.

Having studied psychology in university and always being interested in how the brain functions, I have read a lot about the damage and difficulty of painful flashbacks for some people. With or without a trigger, someone may relive a particularly challenging memory and become traumatized by the larger impact of that flashback. It’s not to say that all flashbacks are negative memories, far from it in fact, but I suppose I just don’t hear of many people talking about their flashbacks of positive memories very often.

My flash forwards are incredibly helpful for me. They fuel my recovery, they give me something specific to work towards, and they represent a light at the end of the tunnel in some ways. They show me what life can look like when I’m not on the dark side. They provide specific details of situations that I can’t presently experience. They remind me of what is most important to me and why I’m fighting so hard everyday to regain the physical abilities that I lost in my accident. Instead of trapping these experiences into history and saying that they’re a part of a past that I won’t ever see, I place them in front of me, in my future, with the utmost intention of realizing these flash forwards.

They are NOT wishes, they are NOT dreams, they are NOT aspirations or hopes. For these reasons, I can’t tweak them and change them around as I see fit. Much like memories which are based on facts of how things happened, flash forwards are structured the same way, as inherent truths, based on facts of how things WILL happen. That’s why they come to me organically and vividly and I have little control of how I see them. I just choose to accept them and see them as a glimpse into a definite future.

I’ll leave you with one more flash forward. As I have mentioned on this blog, just three days before my accident, I had one of the most amazing experiences of my life on a backpacking trip in the mountains with friends. For months, I have struggled many times wondering if I will ever have an experience like that again, if I’ll ever feel the joy of carrying all of my material needs on my back and venturing into the beauty of the high mountains…

The weight of my backpack feels heavier than it used to on previous trips but here I am again slowly hiking up the narrow trail surrounded by the majestic Sierra Nevada mountains of Eastern California. I’m definitely putting more weight on my hiking poles than I was expecting but I’m still stepping up the gravel path in anticipation of the alpine lake at the top. My steps are a bit crooked as it becomes apparent by looking at my footsteps that my left leg is still a bit weaker than my right, but I feel strong nevertheless. The air two miles high is thin and cool and I’m panting regularly but the sun radiates through my entire body, warming me through from the inside. I’m enjoying each step I take in my rugged hiking boots and I smile and realize I never knew that this moment would come again.

Compounding challenges of a cold

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.