Wonders of the internet

The internet really blows me away sometimes. I know I’m stating the obvious and sounding pretty cliche so let me say this instead: I can’t imagine what this injury would be like 10, 20 or 30 years ago, specifically in regards to the difference in social connectivity then vs. now.

Last week a friend posted my Al Jazeera video at Ekso Bionics on Upworthy.com, a site that I didn’t know much about previously. Within minutes, I had emails, blog comments, Facebook messages, and all kinds of communication from people all over the world who had seen the story and felt inspired enough to read my blog and to contact me personally. I was blown away. I have had a couple of big social media days since I started writing this blog but this broke all the records. The communication kept flooding in over the weekend and I’m still barely catching up to all of it.

As a result of just this recent wave of traffic, I’ve made new contacts, connected with people who have the same injury as me to swap stories, received extraordinarily generous offers of help and support from complete strangers, and read sincere, kind messages of love, positivity and encouragement from people I don’t know. I make it a frequent point on this blog to share my gratitude and always recognize those things I do have despite all of the adversity that life has thrown me with this injury, so I have to take a moment to express my thanks to everyone who has read my blog whether you’ve been following me from the beginning or just recently joining me on my path to recovery.

We live in a time where I’m fortunate enough to click a button and upload a video that instantly goes global and motivates people to send me their words of support. There are websites out there specifically to help people raise money or organize events to give themselves a better shot at improving their condition. By connecting with some of the readers and visitors of my blog, I’ve learned about cutting edge treatments for spinal cord injury (SCI), brand new devices and equipment, and read about prolific research that is paving the way for a better understanding of how the spinal cord heals. I can’t imagine how different it would be if I didn’t have access to such forms of communication and (I have to admit) I wonder if or how much my recovery would have suffered if I didn’t live in an age where so much information is so incredibly accessible.

Last year, when I was still in the hospital, I had my first conversation with Grant Korgan (a fellow survivor of SCI and an incredible and inspiring person) and the first thing he said to me as I wheezed and forced out a barely audible sentence was, “bro, there is SO much love out there, just waiting for you.” I’m feeling grateful to be able to realize this every day, and in novel and interesting ways. Thank you all for giving me so much continued inspiration and for keeping me on my path to recovery.

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…

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.

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.

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.

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.

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.

The Infuriating Case of SCI Semantics

Hospital staff person – “I’ve heard about a lot of quads doing that. Now are you a quadriplegic or a paraplegic?”

Me – “Neither! I hate classifications like that! I’m a nothingplegic because I’m just someone who had a bad accident, but is on his way to recovery and hate being categorized or classified with this bullshit terminology!”

Ok so that’s not exactly how I responded to the good-intentioned hospital worker who was talking to me about my life post-rehab, but that’s exactly what I wanted to say. Maybe I’m oversensitive about this one but I’ve always disliked it when people tried to categorize me. I would think it was difficult to do that since I’ve always taken pride in being a multi-dimentional person with a diverse range of interests and hobbies. I mean, in high school for example, (the absolute peak period of time when people classify each other), I was a soccer playing, gym-going, guitar-playing, swing-dancing, fantasy book-reading, political protest-attending, newspaper editor/jock/nerd/musician. I had friends in all different circles and thoroughly enjoyed the fact that I couldn’t be boxed into a category. Now the same thing goes with this quadri/tetra/paraplegic nonsense that I keep hearing about.

(Technically, quad and tetra mean the same thing, motor or sensory impairment in all four limbs and para means an impairment of just the lower extremities)

To me, classifying myself as any of these admits defeat to a certain extent. When you break an arm or sprain your knee, do you start referring to yourself by a different term? If you get bronchitis or a severe flu do you accept some silly title that means little to you but probably makes a world of difference to medical students attempting to diagnose you? Of course, Spinal Cord Injury (SCI) is obviously more significant than the flu or a broken bone and will take much longer to recover from, but my approach and outlook is that of a person with a temporary condition who is on the path to recovery. I see this injury as a hindrance, an obstacle, an extended stay in jail on the Monopoly board before I break out and piece my body back together and get back to full health.

Maybe because doctors are so reluctant to give SCI patients false hope is why they so frequently tell patients they won’t walk or recover and that leads to people to accept these self-defeating terms and calling themselves quadriplegic or what have you. Well, that’s not for me. No way. The only classification I can accept is that of a human being, albeit a badly injured one on an extremely difficult path, but I see myself as fundamentally no different than I was before this injury. I’m not going to start calling myself something different, and with all my intention, ambition and desire focused on a 100% recovery, there’s no chance I’ll ever refer to myself using any of these ridiculous terms. End of story.

Very inspiring TED talk

Very inspiring TED talk

This video is just pure inspiration!! For all of those doubters and naysayers who like to tell people who have suffered a Spinal Cord Injury that they will never walk (or recover many other functions), this amazing woman and her story proves you wrong. I hope to be in her position someday, recovered from this horrific injury and giving my own TED talk.

Please take the few minutes out of your day to watch and share this video. Thanks!!