Truth May Set Us Free, But It Sure Is Uncomfortable
Last Thursday I had the worst ticking episode this year, or past few years for that matter. I twitched like I had been lobotomized with a cattle prod. My insomnia had me up around the clock, sagebrush had been trying to colonize my nose for three long weeks, and I had to run my girls all over the Western United States. Well, it felt like it at any rate. Take a look for yourself. It was an unusually busy day. Load the map up into Google Earth to get a better idea of how many miles I drove. It pushed me beyond phycical limits on only 4½ hours of sleep. And that's life, right? We all work hard. By the end of this day, however, my brain was a puddle of quivering goo. I had done too much. Despite all the work I needed to do, despite my deadlines such as my client's website awaiting completion and an unfinished manuscript I needed to complete for an upcoming writing workshop, I couldn't push any further. So I sat at the kitchen table twitching & ticking & vegetating.
I was also getting mad. I had things to do and my mind was letting me down. I thought about blogging about it or working on the fourth installment of the Will or Wallow series and realized I couldn't type. Then my thoughts took a negative turn and I thought of the different people over the years who assumed I wasn't truly a depressive because I managed my Depression, and without meds. As if my life was somehow easy. Didn't they realize the situation I was in was caused by meds?
I also thought of readers on the other side of the spectrum who seemed intimidated by my "accomplishments", thinking they could not do the same - as if I had accomplished anything. To be honest, I was feeling a little sorry for myself. That is when it occurred to me to do something I had never done before. I decided to video blog my feelings.
Shock can jumpstart adrenaline which can help me manage my tics, and nothing seemed more shocking to me at that moment than actually showing people what I looked like on my frequent bad days. I posted the video on Seesmic.com and had a small, but satisfying response. In addition, the shock worked. I stopped ticking and had a few hours of non-spastic bliss. Unfortunately, the days that followed were a blur of sleep and ticking with nothing notable to show for it.
I've struggled over the weekend whether I should post the video on my blog here as well, and ultimately decided in favor of posting. It is a big step for me. I hide my ticking from the public. I have for 16 years. I don't let anybody see me tic if I can help it. Ultimately, however, I do not believe this has helped me. People only see me when I'm in control, so they find it hard to believe I'm disabled. I also miss out on a lot of living cooped up in my apartment. And maybe, just maybe, somebody out there will find inspiration from my struggle.
There was another reason I thought I should post the video. I wanted to test my mettle.
I have recently made the acquaintance of Rick Walton, a children's book author. Rick has advanced Parkinson's Disease and still goes out in public all atremble. He gives keynote speeches. He teaches workshops. He interacts with fans, and he writes, writes, writes using voice dictation software. I will be attending a workshop of Rick's this Saturday here in Salt Lake City. I am sure Rick will be there despite his illness. I have decided I will be there, too, even if I am ticking as bad as you see me below.
One thing to keep in mind before you watch the embedded video is that this will probably be uncomfortable for you. An online friend of mine had to open up another tab in her browser to cover the video so she could concentrate on the audio. My wife worries I risk setting myself up for ridicule, but I believe this will do good for my readers who struggle with their own issues. I should also warn you that I ramble a bit. It was difficult to express myself over the nine minutes of the video.
What I'd like you to take away from the video is the need to fight. Don't give up. We didn't ask for these mental hurdles, and they are difficult to leap over, but we have the power within ourselves to overcome. Change your thinking, and change your life. I believe this. I have to believe it, and my life is better for it:
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Comments
I hope this helps people understand how difficult it can be for you. It's so exhausting, sometimes, dealing with people who don't believe in disabilities like ADD and Depression, simply because they can't see them, and aren't close enough to see their effect on our lives. Heck, sometimes people who are close have trouble believing there's a neurological cause, and that we're not just making excuses. I hope this gets through to some of those people. Thank you for being brave enough to post this.
Deb
I am again amazed at your courage in the face of incredible challenges. You inspire me. Watching you, I know I can make it through the minor snags in my life. My husband, who won't read, was even willing to sit down and watch your video. Baby steps!
Claire
We all have our difficulties; we just need to keep our spirits up as we deal with them. I figure if I can't control my disabilty, I might as well do something to control my feelings about it. That leaves me better able to take advantage of opportunity.
Today, I practiced electro dancing with my 13 year old. I have a small window of control between episodes so I try to get as much living squeezed in as I can. I may look silly, but I cherish the times I can do coordinated things physically. I'm thankful I have these moments at all.
~Douglas
First off, I'm going to echo Jeanie by agreeing that you were very brave to put this up. I know it made you nervous and it wasn't an easy choice to make. I also think it was a very wise choice to make.
I've known you for quite a few years now, back before you had the neurological disability, and I've never seen you in the midst of a ticking episode. I certainly didn't think you were making it up--why would anyone want to make something like this up?--but I hadn't really internalized how bad these episodes can get for you. That's because there's only so much that descriptions can convey. Sometimes you just have to put the keyboard down and show people what you're going through for the sake of greater understanding.
I think it's very much human nature for people to believe, in an unexamined fashion, that their problems are worse than anyone else's. The interesting thing is, when we really get to know each other's problems intimately, most of us discover that we'd rather shoulder our own well-known struggles than accept the alarming challenges that have been given to other people. It's the classic case of the devil you know vs. the devil you don't, I suppose.
I think I could blather about this for some time, but I'll spare you. Suffice to say, ya done good.
INAPPROPRIATE HUMOR MOMENT:
You wanted to know what you look like while ticking? To be honest, O Former Teen of the '80s, two words came to mind: Max Headroom.
We're all born in sin and none of us are perfect. Words which my counselor told me on my last day of group which i partially agree with, "you can't control and change others....just yourself."
I'm reading Turn-Around: When your life is in crisis ('all events are neutral. "negative" & "positive" are constructs of your own mind and how you feel they effect your life.'-not verbatim).
My feelings how your post effect my life: POSITIVE!!!
I remembered your post stating meds increased your disability and it made me research and ask questions about what the nurses and doctors were giving me. I fought to change my meds depending on the side affects and chemical interactions. Diagnosing and Medication are a guessing game. Process of elimination.
The podcast I tweeted helped re-iterate what my therapist stated before my vacation was over. You are your only advocate. She's not only a therapist. She's a member.
Keep posting. This is your blog. We're interested and care.
May The Lord continue to use you mightily.
-Jestutripup
my regards to you. Sue xx