Wednesday, October 12, 2011

Is Disability a Dirty Word?

Today is World Arthritis Day, so thought I would use the opportunity to continue the discussion I started a few weeks ago about the “Invisible Illnesses” that so many of use deal with on a daily basis.

We don't often use the word "disabled" in our house. Instead, my husband likes to refer to me as “enabled” because I have accomplished so much despite the fact that I suffer daily from Rheumatoid Arthritis. The truth of the matter, however, is that I am disabled. It has taken me a long time to admit that, and yet, I still struggle with what the term entails. Even though I know it is not a *bad* word ... it is a word that reminds me I have limitations.

I have a cane that sits next to my bed, and even on my worst days, when I know it will help me get around, I do not reach for it. Stubborn? Yes. Determined? Yes. Ashamed? No. I have disabilities and difficulties, but I deal with it the only way I know how - by living my life - one "spoon" at a time.

This week I officially started “training” for the Arthritis Foundation’s Jingle Bell 5K Walk in December. I say “training” because, unlike many people, I cannot just get up and walk 3+ miles. In fact, on many days, I can barely walk a quarter of a mile.

Last year was the first time I had tried to walk the 5K. Just as I am doing this year, I had to train. It was not easy – my first day on the treadmill, I was able to walk only for fifteen minutes at 2.5mph. By December, I was walking close to 2.75 miles (about 45 minutes) at 3.5mph. When it came to race day, I felt pretty good. I did not however, figure in a couple of additional factors: (1) I would be pushing my 35lb 4 year old in a stroller while I was walking, (2) I would be pushing a case of water in the bottom of said stroller – you know, in case I got thirsty, (3) There would be hills throughout the course, and (4) There would be horses that my daughter would want to stop and look at along the course. After all was said and done, I finished the race ... dead last. So far last, in fact, that everyone was packing up. But – I finished. And I intend to finish again this year.

My first day of training, was not quite as bad as last year, as I sporadically have been trying to keep up on the treadmill (meaning about once or twice a month vs. never). On Monday I walked 1.5 miles going 3.0 miles, followed by a long hot shower and another hour with my heating pad... heaven.

Why do I put myself through this when I could easily just say I don’t feel good, I’ll start tomorrow (or never?) Because I need to. Because I want to raise money for Arthritis research so that there will one day be a cure. Because I want to know that I am doing everything I can to keep myself moving (which is allegedly good for me.) Because even though I am disabled, I want to remind myself that I am also, as my husband says, enabled.

I don’t want to be known as “J’s mom - - the one with RA” or “That women with RA who wrote that kid’s book.” I don’t want to be the one at the PTO meeting nobody wants on their committee because I can’t lift anything heavy (true), or because I may not be able to come to all the meetings (less true). I want to simply be known as Karen – mom, wife, author, accountant ... person... even if you do see me with my cane.

To help support me in my fight against Arthritis, please visit my Jingle Bell Run Donation Page -- we would love to have you walk or run with us. Even the smallest donation can make a difference!

xoxo - Karen

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