The Power of a Word

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The Power of a Word

Last Fall, around the anniversary of my accident, I thought that rather than recounting the things I’ve accomplished since breaking my back, which would basically be a rehashing of Facebook highlights, I’d go a little deeper and make a list of things that I’ve learned after 7 years as a paraplegic. I figured that if I could organize my thoughts into something meaningful, perhaps I’d feel like I’m still moving forward in life, as opposed to the feeling I often get; that I’m floating down some kind of river of forced retirement without a lot of purpose.

I started by scratching down anything that came to mind, and then narrowed down the list and put the ideas into some kind of order. The list turned out to be a little heavy, but I think that’s just representative of my mental state at the time. It also makes sense to me that it’s the tough stuff that I’m still working through that tends to clutter my mind; so hopefully getting it out of my head and into the blog will free up some space. My apologies if it comes across a little like “Deep Thoughts with Jack Handey,” but this is my world.

While it might seem a little rudimentary, I realized that the first thing on my list that I needed to sort out for myself (and as I’m sharing this with the world it’s probably not a bad thing to get out of the way for you either), has to do with word ‘disabled’. Specifically, I’ve had to acknowledge the power that I’ve allowed this word to have over me. 

I’ve danced around the word ‘disabled’ since my accident, trying as much as possible to avoid using it as a way to define or classify myself. I always knew that I didn’t like it, but ‘being disabled’ was a requirement for things like insurance, a parking pass, or not being able to work full-time. Upon taking the time to really stop and think about it though, I realize that there is a direct correlation between the time when I allow myself to be defined as ‘disabled’ and the feelings of helplessness and depression that I struggle with. Words and labels are powerful. This isn’t news to most of us. But to go from the experience of benefiting from positive labels, to those that are harmful and full of baggage, is like getting a surprise punch to the gut.

Before my accident, I would have been happy describing myself as tall, blond, active, reasonably intelligent, hard-working and fun. All of those are either neutral or have a positive connotation; no big deal. Upon breaking my back, even though I was still blond, active, etc., a new master status was thrust upon me and constantly threatens to overshadow everything else, and that is, ‘disabled’. My classification is paraplegic and the most visually distinctive thing about me now is that I’m in a wheelchair. Damn.

I think it’s funny how my brain works.  Even just saying the words in my head “I’m disabled,” sucks the life out of me.  I lose all of my motivation to go and accomplish shit. I also laugh at myself because I realize that it’s my own baggage that’s bringing me down.  A lifetime of equating being disabled with being broken, and being less than able-bodied, is proving extremely difficult to redefine in my head, even though I know many people with disabilities who are incredible in countless ways, and even though I’m now one of those with the disability. 

Before my injury I never took the time to learn about the specific challenges that those with disabilities have. I was busy with my own life and concerns, so like many, I put everyone with a disability into the ‘disabled bucket’. It was easy. It was lazy. Now that I’m the guy with the disability, I’m forced to address this myopic view of the word, because it’s my personal well-being at stake. Through all this contemplation trying to figure out what makes me tick, I’ve concluded that I can’t think of myself as ‘disabled’, but rather, I need to think of myself as ‘having a disability’. I have a spinal cord injury. I have shit that I need to deal with on a daily basis, like watching the clock to manually manage my bladder and skin, or to pre-emptively figure out the logistics of the physical environment if I’m going somewhere new. It sucks, but I can handle it. These are challenges that I routinely have to overcome, but they are not me. The fact that I can deal with them and do other things makes my other achievements more meaningful. I’m not broken as a person, my day is just a little more difficult than most.

I was thinking about those who have a broken leg, or who are fighting cancer.   We don’t say “they are broken” or “they are cancer”, we acknowledge that these conditions are something that they ‘have’.   Yet society lumps everyone together into a ‘disabled’ category.  It’s tidy.  I understand why the ‘disabled’ check box is needed on forms and why we have disabled parking spots.  I just refuse to put myself in that bucket anymore. And, to the best of my ability, I won’t accept others putting me into that category.

Looking back, I’ve been feeling this way for a while. I remember putting the M-Dot (Ironman symbol) sticker on the back of my wheelchair the day after I completed Ironman Louisville. Inside my head I think that the sticker does a nice job of contradicting the appearance of the wheelchair. If anyone looks at me and thinks to themselves “poor disabled guy,” I hope they see the M-Dot and realize that I am a serious athlete.  If anyone is feeling sorry for me, I’ll challenge them to a day of swim, bike and run, and then we can decide who should be feeling sorry for whom. Maybe it’s a smart-ass and pompous way of thinking, but it does make me feel better.

So to wrap this up, one of the big things I’ve learned since breaking my back, is that words and symbols contain all the power that we give them. And that’s the key in all of this. I realize that it’s 100% up to me to determine what meaning I give to any word, regardless of what society or the world thinks or proclaims. I make that decision and I benefit or suffer from doing so. Even just reminding myself that I control this process is empowering, and this can dramatically improve the quality of my life. This blog will help me do that.

Allowing myself to slip into a group called ‘disabled’ by society might provide some relief of expectation and accountability from others for a time, but it ultimately leads me to being miserable. Yes, I still need that disabled parking pass.  But I refuse to be a victim of a spinal cord injury, I have to be a fighter. So in the same way that I will not adopt the label ‘disabled’, I’m hoping that people I care about in life will decide to see and refer to me as just another guy who is kind, smart, funny, athletic, etc., and if for some reason it’s important to the conversation, I can be referred to as having a spinal cord injury, as in…“he does all these things, oh, and by the way, he’s paraplegic”! If everyone can take the time and effort to at least question the buckets that they put people into, I think we’ll be making the world a better place. 

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ready to blog

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ready to blog

It has been seven years since my accident, and while I’ve accomplished a great deal, I can’t say that I’ve overcome my injury. Hell, I can’t even tell you what it means to overcome a spinal cord injury.  Thinking about it now, I don’t think it’s actually possible. Life is never going to be the same as it was before my injury, so the best I can probably do is to redefine what it is that makes me feel valued, loved, productive and happy.  

In the days, weeks and months following my accident I thought that physically overcoming the loss of my legs would solve my problems. In the hospital, my physical accomplishments involved learning to sit up and not faint, or being able to push around the flat and smooth halls of the hospital for 10 minutes at a time. This was progress back then. But how could I stretch myself? How could I do something better, longer, faster? Those questions, and the need to prove to myself and to the world that “I’m okay,” drove me to complete my first Ironman triathlon in 2013. Less than 5 years after breaking my back, I did what I thought just might be impossible, with only my arms. 226kms of swimming, biking and running in 12 hours and 32 minutes. All those little victories and accomplishments along the way to making this happen culminated in the ultimate day of physical and mental triumph. Being an Ironman is something that I’m incredibly proud of, but does it mean that I’ve overcome paraplegia? 

Unfortunately no. There’s just so much more to it. Lots under the surface that people don’t see.  That I don’t let people see. But, things that I believe I need to share so that I can move a little closer to maybe not overcoming paraplegia, but at least finding balance in my life that will bring a sense of comfort or contentment. I should point out that I’m not just out-of-sorts because of my accident. From an early age I’ve always put a lot of pressure on myself to make the most of every day and opportunity. It’s just that now I have a few more things that make life challenging that I need to deal with, and these are unexpected challenges that are totally foreign to me. Before my accident, I had no experience or exposure to people with spinal cord injuries. And I certainly never took it upon myself to learn what it might mean to someone dealing with these challenges – I was in my own able-bodied bubble. I now know that these challenges are very personal and unique. No one can truly understand how I experience them, but my hope is that over time, if I can clearly express what some of these challenges are, that those close to me can better appreciate what it means to live with a spinal cord injury on a daily basis.

And so, in this 8th year of my injury, I’m going to put out to the world what’s going on in my head, to see if it helps make tomorrow a little brighter. Don’t feel any obligation to read, or respond, but if understanding my drama helps you deal with some of yours, then I guess we both benefit, and that will make me happy.

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“Freedom 44”

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“Freedom 44”

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written Fall of 2015

The Fall is always a difficult time of the year for me. The kids are back to school, my peers are all focused on their careers after some summer holidays, and I find myself at home, with even more time on my hands and a desperate need to figure out what I should do with my life. Since going on full-time disability leave in 2011 to try and sort out the challenges related to my spinal cord injury (SCI), I’ve often joked with friends that I’ve entered retirement. “Freedom 44” I say with a smile. I’m so grateful that I have insurance and investments that allow me to support my family and retain a comfortable lifestyle, but I never expected to be in this position in my 40’s and it’s something that I struggle with. September is also a bitch because in the back of my mind I know the anniversary of the day I broke my back is looming.

In previous years, Sabrina or I have acknowledged October 5th and shared with the world a little update with regards to where we’re at, or highlighting things we’ve accomplished or worked through. Last year I asked Sabrina not to acknowledge the date because I didn’t want to draw any attention to myself, or give the day any significance. Whenever I’m public with my life I fear that I might come across as soliciting pity or compliments, and this is something that I don’t want to do. This year, I’ve got things building up in me that I need to get out, so I’ve started writing, and after sharing my thoughts with a couple of very close friends, I’m feeling comfortable enough to share these with the world. Getting my thoughts down helps me work through how I feel about things so that I can hopefully move forward. Let's sort out some shit. Welcome to my blog.

 

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