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Posts Tagged ‘SCI Sucks’

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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Happy Friday Everyone!

Riding my exercise bike this morning, I was watching the news as usual and was so happy to see a story about a flash mob that gathered in a store parking lot to collect money for a family in need. It just spoke volumes about how generous people really are, and how collectively, we can all make a difference to others. Reminds me of the old favorite “It’s a Wonderful Life,” which I watched for the very first time just last year! I loved that story – who doesn’t?

So along those lines of spreading the Christmas spirit and being thankful for all those who have helped me, my family and Push to Walk, I would now like to mention other people and organizations who are near and dear to my heart and share how thankful I am to them:

Bob Parker and NewBridge (www.newbridge.org), a local non profit which helps bring balance to people’s lives through counseling, housing and education for children, adults and seniors. Besides having my own ties to them for many, many years, their nurse and social worker helped my Mother and provided some much needed services when she was living alone.

Unite 2 Fight Paralysis, a new favorite since being immersed in the world of spinal cord injury, is a wonderful group of people dedicated to uniting and empowering the international spinal cord injury community to cure paralysis through advocacy, education and support for research. Marilyn Smith and her team have worked tirelessly to make progress in all of these areas and continues to provide a voice for all of us in search of a cure. Thank you! (www.u2fp.org)

Another favorite local non profit is the Community Soup Kitchen (www.cskmorristown.org) who provides nutritious meals in a warm, safe, and caring environment, free of charge, no questions asked along with assistance in accessing community resources, services, and educational programs. Carol Kennedy has been involved with this organization for many years and they meet an ever increasing need for these types of services.

Some SCI favorite resources: The Kessler Foundation, The Christopher and Dana Reeve Foundation, SCI Sucks, Spinalpedia and  FacingDisability.com. Check out these links and take advantage of the information and services they provide. Perhaps they will become some of your favorites in the future!

Enjoy the weekend, and I hope you look forward to the holidays with as much love and joy in your hearts as I do!

Cynthia

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