The Infuriating Case of SCI Semantics

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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

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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!!

A dose of perspective

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Perspective is something that I certainly don’t lack with all the challenges I face, but something nevertheless that I think I can always benefit from, so I’ll share a bit of perspective I gained today. I was chatting with another SCI patient at the new gym I started going to (photos and more on that coming soon) whose injury was similar to mine, just one level higher up on his spine. He was injured almost four years ago and had made tremendous progress all over his body, but he had not yet recovered function in his hands. He saw me adjusting something with my hands and told me how “lucky” I was to have even the limited hand strength that I have especially since it’s so “soon” after my accident.

Let me be perfectly honest about two things: 1) I don’t feel lucky about much these days and 2) the last few months since my injury have felt like an eternity, and I would never use anything like the word “soon” to describe the time elapsed since my world turned upside down back in July.

But this is where perspective comes in, and I thankfully recognized that this could be a learning moment. Instead of dwelling on my own challenges, I was being handed a golden opportunity to zoom out for a moment, to recognize that things could always be worse and to feel grateful for what I have. It was a perfect example of taking something negative and turning it into a constructive, positive experience. Yes I want nothing more than to be able to walk again. Yes I want to recover as quickly as possible and do all of the things I miss so much. Yes I feel like I’ve suffered enough already and have learned a lifetime of lessons in the last few months. But it’s important to maintain my perspective and always celebrate what I do have…

A Crowded Battlefield (Part 2)

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Continuing on from my previous post about the military battlefield analogy I used to describe dealing with SCI, I want to highlight more specifically what I meant.

I think that for many people I talk to or meet who learn of my condition, their thought is that my inability to use my lower body is the absolute thing I’m concerned with. I tell them about my intensive therapy and exercise that I’m doing six days a week and their rightful assumption is that it’s all intended for me to be able to reengage my legs. In my military analogy from my last post, the battle to regain function of my legs is the army facing me straight ahead. It’s obviously the most significant challenge for me and the one for which I’ve most prepared.

While that is a mostly correct assumption, one of the most frustrating aspects of this injury, and its ensuing recovery, is that my legs are one of MANY challenges I struggle with everyday. Because the level of my injury was so high up on my spine (C5 and C6 vertebra in my neck), there are many functions that are controlled by nerves further down my spine, that I do not have full control of yet.

Here are examples of just three:

Hands – This is probably my biggest day-to-day frustration. My fingers and hands have regained a lot of function and improved considerably but they’re still at about 50% of what they should be. My grip is still weak and I can’t hold certain things in one hand (i.e. laptop, heavy book, plate of food). My fingers are stiff and not dextrous so simple things like buttoning up a shirt or tying my shoes is a massive struggle. This also prevents me from cooking, playing guitar and doing other hobbies that are so important to me.

Core/trunk – This has improved tremendously and is the area I’m exercising the most in all of my therapy, but it’s still weak. Other than a flabby, soft stomach (which isn’t great for my ego…), it means that basic mobility and moving around in a seated position is very difficult. Dropping something on the ground or reaching for something becomes a risk of falling out of my chair. Cutting food with a fork and knife is still impossible because that would involve  both my hands and I don’t have the strength yet to sit and use both arms unsupported. So I can only still use one hand to eat, and the other to stabilize myself.

Shoulders – To be clear, my shoulders are working 100%, and they’re stronger than ever but that’s where the challenge comes in. I use my arms for EVERYTHING. Aside from moving around in the wheelchair, throughout the day I have to lift up my legs and move them with my arms. Ok so I do have thin legs but they still weigh a lot! Every time I transition from my wheelchair to the car or to bed or to the couch, it means supporting my entire body weight in my shoulders and arms. The bottom line is, my shoulders are exhausted all the time. I have massive knots and tight spots throughout my back, shoulders and neck. Massage anyone??

Aside from these three functions I’ve described, there are many more that aren’t 100% but I think this gives a more complete sense of what dealing with a SCI is like. It’s not just the legs. One day or one hour, it’s one challenge, the next it’s another. I may think I’m improving one thing but as soon as I want to celebrate that accomplishment, I realize four other things that aren’t working. Every day gets split up into segments of dealing with one body part at a time and trying to measure that progress becomes lost in the attempt to improve other body parts. Back to my battlefield analogy, it’s a feeling of being attacked on so many fronts, from so many places. Some days, I don’t know where to focus my efforts because it’s all so overwhelming.

I know that as I improve and as those functions come back, I can focus more energy in less places and feel less overwhelmed. But for now, the battlefield remains crowded…

A Crowded Battlefield (Part 1)

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I’m not usually big on military or war analogies but the following is the most effective and accurate way I can describe the frustrating and overwhelming complexity of dealing with a Spinal Cord Injury (SCI) on a daily basis:

Imagine you’re on a battlefield, looking straight ahead to the line of enemy troops facing you, readying their imminent attack. Your army is significantly weakened from a recent massive battle that took some of your best troops, yet your will is still strong. There is no retreat. You have no choice but to undertake this fight, for any chance of victory or freedom lies on the other side of the army facing you. Haste as they may be, your battle strategies have been drawn, your contingency plans have been made, and for better or worse, you’re ready to engage. You give the signal to your troops to attack and you begin your advance towards the enemy.

Just seconds before you reach the troops facing you, you notice a massive army coming at you from the left. You urgently notify your soldiers and as soon as you’re getting ready to face the two imposing forces, you can’t help but notice an even larger army aggressively stampeding towards you from the right side. You barely have time to process this next challenge before you notice that somehow, a horde of fresh enemy troops is advancing upon you from behind. You are now being attacked from all sides and your battered army is facing almost certain defeat. You have seconds to shout out orders to your loyal soldiers who are surrounded and badly outnumbered, when you realize that in the sky above you, there are planes dropping bombs with the utmost intention to cause as many casualties as possible. Help at last! 

You weren’t expecting any allies, yet you hope more than anything that somehow, these planes are on your side, that they will help you fight the four armies you face in this now crowded battlefield. Immediately though, you notice that with pinpoint accuracy, the bombs are falling on your troops. You have no allies.

You’re overwhelmed, frightened beyond words, and know that adrenaline and pure shock are the only emotions that will allow you to fight to your apparently inescapable death. It can’t get worse, right? It does. The ground beneath you violently shakes and knocks half of your army on their asses. The earth you stand on is trembling and cracking, mimicking the most violent earthquake you could imagine. You are literally fighting 360 degrees around you. You can almost taste the metallic sting of your own blood. You close your eyes, wanting this nightmare to end; to wake up and see that this hellish scenario was all too overwhelming to be real…

(To be continued…)

Why I shouldn’t be thankful and why I still am

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On the eve of Thanksgiving, a day in which we’re meant to consider being thankful, it’s somewhat instinctive for me to think that there is very little for me to be thankful for right now. Why should I be thankful? I’ve suffered a horrific accident that has left me incapable of doing so many of the things I love. My life has been turned completely upside down at a time where I should be harnessing all the intellectual and creative potential I have in a professional way. I’m regrettably not getting on any planes or visiting any friends or family in a faraway place, because the logistics of long distance travel are too much to handle.

But as tempting as it is to get caught up in the negativity and think about why things suck so much right now (because honestly, many things really DO suck now), I’d rather think about the following list of just a few of the things I’m extremely thankful for despite my current condition.

Why I’m thankful:

  • I have improved every single day since my accident and will continue to do so in some way
  • My brain function has been unaffected by this accident. I have all the cognitive and mental capacities I’ve always had
  • I can still drink coffee
  • I am reminded everyday of the many people in my incredible community of friends and family and all they’re doing to help me
  • I couldn’t ask for a better family
  • My hands are strong enough to at least somewhat prepare and cook the turkey, and my intense exercise allows me to be hungry enough to eat all my Thanksgiving favorites
  • I can go outside and enjoy the sunshine and fresh air
  • My scars are pretty badass