back at it

So, I decided to sell generosity.org–it might be valuable, and I could use the money, and I wasn’t really using it for much. I moved the blog here: johnstoner.wordpress.com. No hassles, no upgrades, technical problems are someone else’s problem. I can just write. Which is why I wanted to blog in the first place.

Update for those who were interested in my surgery: my implants really never worked out. I could walk better–well, I could walk forward in a straight line better, if there was no crowd to navigate. I could barely walk backwards (which doesn’t sound like a big deal until it’s a struggle), and I couldn’t move in a responsive way. A friend of mine once picked me up and spun me around in a bar, and when he set me back down, I kept spinning, and almost fell over. Surprises while walking were always bad–if someone in front of me stopped suddenly, I was very unsteady. Crowds, again, bad.

I couldn’t talk well. No voice projection, poor enunciation. I got used to repeating myself a lot, but not being able to address groups was frustrating. And in job interviews, it’s been deadly. If you want to make an extrovert unhappy, take away his speech.

My whole sense of rhythm was shot. Forget dancing, it was hard to knock on a door, hammer a nail, grate cheese… I was also just generally weaker–I could ride a bike, but not fast. There’s a mental threshold of physical difficulty–some things just feel hard to do. The implants lowered that threshold, pretty substantially.

Anyway, in the last couple weeks, the batteries died. One thing that kept me from just shutting them off was my body’s response to the sudden cessation of current to my brain.  My neck would go into painful spasms. As the batteries died, they tapered off, so it wasn’t quite as bad as it had been.

Having them off is not a panacea. My neck spasms are stronger and more painful. My left foot twists more, and it’s more of a struggle to walk long distances. But I can make myself heard across a room. And my enunciation isn’t quite back to what it was, but it’s better.

I’ve discussed having the leads reimplanted in my brain with my neurologist. I feel like I’ve been through a lot without much to show for it. My thought is, I’ll look at it again when technology improves, and outcomes are more predictable. The procedure itself is a lot to go through, and it can take a long time to explore the space of possible settings, either to find the optimal setting, or that there isn’t a good setting and you need to be reimplanted. It’s still too hit-and-miss.

When I moved this site over to the wordpress servers, I looked back at my original posts. I realized I spent over twenty hours in surgery awake. I went through four surgeries. Going back in again, without much assurance of a better outcome, is a lot to ask. I’m not one to say ‘never,’ but until they can convince me the next time will go better, I’ll pass.

In the meantime, I’ll try yoga. I’ll probably go with yin yoga: lots of stretching, slow, low exertion. The hard part for me is figuring out where it goes in the design of my day. No, that’s a bunch of crap: the hard part is starting. Isn’t that always how it is?

And as for blogging, I think I’ll start again. I still have plenty to say. I love the interactivity of Facebook, but some things aren’t just for my  friends to read.

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9 comments

  1. Hey John!
    So happy to see you’re writing/sharing again. I always enjoy hearing what you’ve got to say. Sorry to hear your surgical efforts didn’t work out. You never know til you try – that takes guts.

  2. Hi John,
    Glad to hear you are writing again, look forward to reading your blog! Let us know how the yoga works for you.

    Thinking of you,
    Parris & Mariah

  3. Hi John. Nice new layout. Glad to know you’re writing again. When you say “make an extrovert unhappy” are you talking about yourself?

  4. I am really pleased that you are writing again… something i have nagged you about since 5th grade. The discipline in keeping up with it is almost as important as getting the words on the paper.

    Re: Implants. I have seen so many articles and TV programs on PBS about brain activity and physiology. Are any of those in the medical group that advises you following these developments? It seems that these developments would help them in finding the right place to put electrodes. I agree with you that proceeding without reason to expect better performance is not advisable.

    Always remember: Love forever! Dad

  5. Hi Cousin, welcome back to blogging! And welcome to wordpress, its what I use and I love it. Did you go to burning man this year? I have a lot of friends that went…

    xoxo
    June

  6. Revisiting your surgeries, calling a time-out to watch technology advance, yoga (or a martial art) You’re a brave man — and in charge. Carry on.
    AirBob

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