Saturday, March 29, 2014

Bearing the unbearable sorrow

Come May, I will have been in my wheelchair full time for 15 years.

I always imagined that at some point, I'd stop grieving over my situation. After all, I have much in my life -- family, friends, a job, an intellect -- that enable me to rise above Friedreich's ataxia ... or so I thought.

Turns out that not a day goes by that I am not reminded of my body's failings. The reminders are sometimes painful, usually annoying, occasionally funny, but they are never-ending.

This morning, for instance, I sneezed several times in the shower. This required grabbing the bars in my shower tightly, hoping that I wouldn't slip or bang my head into a wall or bar, and keeping my chair from shooting backward when I sneezed. Mission accomplished, but hell, it's exhausting.

These things, even the funny ones, keep the grief alive and make sure that I never forget my disability.

The reminders have been coming hard and fast all week, and they have been augmented by a bunch of crap that has been weighing on me. The result has been I haven't felt good for a while. Little things threaten to tear me apart. I feel like I could sleep all day. I disregard the good things in life.

I am getting better the past few days. I feel as certain as I can that it is grief, though, and while the worst will assuredly pass, I no longer think I will ever not mourn.


Anonymous said...

Everyone is different, so forgive me for saying this if you don't agree. August 21 of 2013 marked 30 years of my being in a wheelchair. Yes, are there things that I miss, totally! I would love to run again, play field hockey in the fall weather, swim in the pool in the summer and lie in the sand at the beach. And that is not the full list. But I have found that while those thoughts definitely go through my head, it takes too much energy to be angry. I decided that I would focus on the positive things and make them fill my life. And when I didn't have enough that was positive, I looked for more. Do I feel like life is unfair sometimes? Yes. Do I feel like the good people get all the crap and others don't get anything? Yes. Do I think about how my life could be different if I wasn't injured? Yes. Are there some days that are so dark I wish things were over? Yes. But the bottom line is that those in the minority and the majority is good. That is what I have to focus on. It makes me a happier person and makes me realize that life is a journey and I am on a path that will have good and bad, but I will focus on as much good as I can and live life to the fullest without the majority of it being angry and tired. This may not help, but just some words from my heart.

Matt Trott said...


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