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Posts Tagged ‘SCIsucks.org’

This particular piece of writing was written a few months ago, when I was having a down day. Fortunately, these days are few and far between, but these feelings are never far from the surface…….

SCI Sucks

I know I am usually a positive person, upbeat and optimistic. But a few days of personal difficulties, and I am down in the dumps. I totally agree with Geoff Kent, who formed “SCI Sucks” with its tagline “People tell us to change the name but then we wouldn’t be telling the truth.” How true. I don’t dwell on this fact for many reasons: I do want to find the positive, I don’t want to live with negativity and depression, and I do want to have impact on others’ lives for the better.

Accordingly, I totally disagree with a recent statement made by a young person with a fairly recent SCI who claimed “the past two years (after my injury) have been the best years of my life.” Really? REALLY? Now, it is possible this person was misquoted, or the words were taken out of context. But that would mean the reporter/writer either made it up, or twisted the words. Possible? I guess so. Probable? I don’t think so.

So I am going to say it again – SCI SUCKS.

Do I love my life, my husband, my family, my friends? Undeniably, YES! Do I love what Push to Walk does and the opportunity it gives me personally and our extraordinary team to do for people? Of course! But unlike some other comments I have read since being involved in the SCI community for almost 9 years now, I WOULD change it if I could. It is NOT the best thing that ever happened to me. It is tough, challenging and upsetting. (And this is just ME, the parent of a young man with an injury. This is not meant to portray how he feels or his outlook, just mine.) Thinking about the what if’s, what was lost, what now – wow, that can be overwhelming. So usually I keep these thoughts suppressed, but there they are, always just beneath the surface ready to rear their ugly presence when my defenses are down.

I get the idea that other people just can’t know what we go through in these situations. Heck, I know I had very little understanding of all this before Darren’s injury. Ignorance is bliss. How I wish I still had that ignorant/innocent outlook. But I know had empathy and compassion, just not the understanding I have now.

So today I write this with a heavy heart. With feelings of sadness, grief and loss. Writing is therapeutic for me, so hopefully after completing this I will go outside, soak up the warmth of the sun, enjoy the warm weather, and take a deep breath. One that will calm my soul, help me realize all the good in my life and in the world around me, and turn my negative feelings into positive actions. If you see me, give me a hug. I could use one today.

Cynthia

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I am an able-bodied person that spends a lot of waking hours around people in wheelchairs. At Push to Walk, most of our clients use wheelchairs for mobility, and while they may not be in their wheelchairs for the duration of their workouts, they come and go and converse with me while in their chairs. As much time as I spend around people in chairs, I do not have a clue what it takes to go through a day, every day, every week, every month, in a chair. While I have been prodded to spend a day in a wheelchair, and I have resisted (more about that in another blog post, I promise), I still don’t think that would help me understand the situation, although it would provide some insight.

In any case, here’s a good example of what those of us who walk around without a thought about the fact that we ARE walking, don’t think about.  And I’m sure there are a thousand other things as well. By the way, this is the father of a Push to Walk client.

Along this line of thought, there is a group called SCI Sucks that spells out what the public doesn’t realize about spinal cord injuries, and the messages often perpetuated by the disabled community itself. Their tagline says it all: “People tell us to change the name, but then we wouldn’t be telling the truth.”

Take a few minutes to think about ways you could improve just little things that could make a world of difference to someone who uses a wheelchair. It might just make someone smile, and make their day just a little easier.

Cynthia

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