Tired and REtired accurately describes me for the past couple of days. No sitting around munching on bon-bons and watching soap operas all day here. So much for the glory days of retirement!

Despite really looking forward to the Thursday Thirteen meme, I just didn't have time to get to it today. Not that this is necessarily bad; it just means that I'm having another good day and have the energy and concentration to get some more work done. I might could get used to this!

The visit with my wunnerful wunnerful neurologist, Dr. S, went well. We're changing my anti-seizure medications again as the Dilantin has never really reached the level in my blood stream that it should in order to work effectively. Instead of continuing to increase the dosage of a drug that just ain't cuttin' the mustard as my Grandma used to say, I'll go back on Topamax. I did have some issues with Topamax causing brain fog a while back; however, I'm no longer teaching and required to have unfailing mental acuity on demand. I'll take a bit of fogginess over clusters of seizures any old day. Besides, Topamax has three delightful side effects from which I gained some additional benefit in the past and hope to see again:

• it causes weight loss
• it is also used to treat and prevent migraines
• it will allow me to stop taking two, possibly three, additional medications

The next couple of weeks will be challenging as I take both the Topamax and Dilantin until I reach the previous dosage of 100 mg of Topamax twice daily and start to wean off the Dilantin. Been there, done that -- at least half a dozen times -- and will survive it once again.

Way back in the day, I began this blog as way to distract myself from the daily ups and downs of living with a degenerative illness that sometimes knocks me soundly on my butt. It took some time, but it has now become a much enjoyed part of my daily routine -- except on the days when headaches and seizures plague me like they have for most of this week.

I have made a conscious decision to avoid life on the pity pot. In this regard, I am absolutely Stoic. We often associate a lack of emotion with the Stoics, but these guys were far from emotionless; they just chose to avoid emotionalism through the use of logic, reason, and reflection. Like the Stoics, I know that I have no control over Chiari or what it does to me; however, I do have control over how I deal with it. I can make a conscious decision to perch perpetually on the pity pot, or I can choose to plop on the pity pot only as needed and to work with what I have and who I am now to the best of my ability the rest of the time. I nearly always choose the latter.

This past week, however, has seriously tried my determination to avoid feeling sorry for myself. I've had the hurts-to-breathe headaches every single day since Sunday. Thankfully, the medication has helped to bring them under control fairly quickly; however, they are so debilitating that it's hard for me to clear my head of the fog they bring and to focus on tasks. Add seizures, which I had on Tuesday and Wednesday, to the mix, and I become a real mess, really quickly.

To deal with the down time, I've learned to write my meme posts way ahead of time whenever possible and to schedule them to go live on the appropriate days. This makes my blog look like all is peachy keen in my little world, even when I'm curled up in a fetal position on the couch trying desperately to make the world go away. Unfortunately, what I can't do is respond to comments from the couch. And that is the whole purpose behind this post.

Peeps, it's been a miserable week, and I haven't been able to respond with any regularity to your comments. I am truly sorry. I know how important comments are in the blogosphere, really I do, and I appreciate every single one that is left for me. Please don't think that I'm not grateful or that I am ignoring what you have to say; this is not the case. If I don't reply to comments, it's because I'm looking for the toilet paper while I sit on the pity pot or because I'm playing roly-poly on the couch and haven't found a way to uncurl myself and still breathe.

So, here's to the end of the week:

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.

I have been waiting for this event ever since I found it on Diary of a Goldfish several months ago. On May 1, 2009, bloggers, both disabled and abled, from around the world will share their experiences, thoughts, and observations on disability discrimination. The goal is to "raise awareness of inequality, promote equality and celebrate the progress we've made."

So if you live with a disability or love someone with a disability, please consider joining us in blogging about it on May 1st. The banner in the sidebar has a link to the Goldfish's blog with the rules and details.