Carleen
Today is Blogging Against Disablism Day (BADD), and I'm thrilled to participate for the first time. I thought long and hard about what I would write, but I kept coming up with topics that I had already blogged about: why people are kinder to me than others with invisible illnesses, what it's like to experience a seizure, the letter to my brain written out of frustration over an especially active day of seizures, or feeling trapped in the various circles of life. But very early this morning, I decided not to write about me and my disabilites; instead, I chose to write about Uncle Ronnie and "the leg." I hope that you enjoy it.

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My Uncle Ronnie is quite a character. With a quick wit, a story to tell, and an impeccable sense of comedic timing, Uncle Ronnie made the summer trips to my Dad's hometown in Colorado something that I, his eldest niece, looked forward to each year. We never knew what he would say or do, but my sisters and I knew that Uncle Ronnie would somehow, some way make us laugh as if we'd never experienced the joy of laughter before. And as much as I loved laughing with Uncle Ronnie, he has no clue that he is responsible for some of my most cherished childhood memories and for teaching me how to turn a disability into an asset.

I've never known Uncle Ronnie without "the leg"; it's as much a part of him as his goofy sense of humor. Because I was a toddler when it happened, I have no recollection of the event that changed Uncle Ronnie's life, but I believe that a drunk driver hit him as he crossed a street in San Francisco while stationed there when he was in the Navy. He suffered a leg injury that became gangrenous and resulted in the amputation of that leg just above the knee. He learned to walk with the aid of a prosthetic leg, but he preferred to use crutches at home. It wasn't until I became an adult that I learned that the early versions of "the leg" often caused Uncle Ronnie more pain than using it provided him with assistance.

Uncle Ronnie used "the leg" for more than walking. We live in different states and saw him only during the annual family vacation to my dad's hometown in Colorado. Of course, in our excitement to hear Uncle Ronnie's goofy stories like how he had just gotten a perm and didn't want us to mess up his hair (it was about 1/4" long), it was hard for me and my sisters to control ourselves. Once, when my youngest sister was about 4 or 5, she was bouncing up and down on Uncle Ronnie's lap as they were playing around. In a very serious voice, Uncle Ronnie told her that if she didn't sit still, his leg would turn to stone. Because "the leg" had always informed our understanding of "normal" where Uncle Ronnie was concerned, Melody continued to bounce, figuring that it was just another one of his funny stories. Suddenly, Uncle Ronnie stood Melody on the floor and stared at his legs. Gingerly, he touched first one, then the other; he squeezed and rubbed and tapped lightly on each leg as if he were selecting produce from the supermarket. We watched his curious motions with much interest. He grabbed Melody's hand, placed it on the shin of "the leg" and instructed her to knock on it. She looked at him like he had lost his mind, but knock on his leg, she did. And when "the leg" emitted a sound in response to her tapping, Melody's eyes became saucer-like. "See," Uncle Ronnie said, "you didn't sit still like I told you to, and now my leg has turned to stone!"

The three of us learned an important lesson from "the leg" that day -- sometimes acting silly is inappropriate, even with someone as fun and funny as our Uncle Ronnie. We had no understanding of the situation at the time but learned as we got older that the prosthetic leg Uncle Ronnie wore often caused horrific blisters that didn't heal well. Melody's energetic movement caused pain for Uncle Ronnie as "the leg" rubbed against an open blister. Instead of making Melody feel guilty for causing him pain or frightening her about it which might, in turn, make her feel uncomfortable about sitting on his lap, Uncle Ronnie turned his discomfort into a teachable moment on appropriate behavior and the importance of self control.

"The leg," and Uncle Ronnie's attitude toward its role in his life, has helped me to deal better with my own disabilities. I can't recall ever hearing Uncle Ronnie complain about the pain or his disability. What I remember best is him taking us fishing, more often without "the leg" than with it; I remember sharing feasts of grilled rainbow trout fresh from our catch of the day. I remember rubbing his head in a deliberate attempt at messing up his newly permed hair. I remember coming home from school one day and finding "the leg" resting on a pillow and neatly tucked under the covers in the middle of my bed. I remember a man who hasn't let his disability define or confine him.

And on the days when it seems like the endless parade of headaches, seizures, drop attacks, dizziness, double-vision, or any of the other things that make up the Chiari cornucopia will push me over the edge, I need only to picture "the leg" in my bed to put it all into the proper perspective.

Thanks, Uncle Ronnie, you've taught me well.
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5 Responses
  1. Wonderful post. Thanks for sharing.



  2. Perspective is really invaluable, and I thank you for sharing yours with us.


  3. seahorse Says:

    Such fortitude is admirable. But I'd have liked him just as much if you'd said he couldn't go out.


  4. garyandcoy Says:

    Warm, sensitive, emotional, honest and straight from the heart.

    Terrific post for BADD 2009!

    Thanks for sharing your memories of Uncle Ronnie - sounds like the kind of guy I could have a few beers and a good conversation with!


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