by Michael S. Kaplan, published on 2006/07/08 03:01 -04:00, original URI: http://blogs.msdn.com/b/michkap/archive/2006/07/08/656437.aspx
At the beginning of this year, I got a note via the Contacting Michael... link from a guy named Brent:
I just read the entirety of your sclerosis-related postings, and I wanted to thank you.
Last week, two days before Christmas, a neurologist gave me a "probable" MS diagnosis (pending MRI). And he gravely said it's likely not the "good MS" (you know, with rainbows, butterflies and remission). Due to the gradual and progressive onset over the last 2 months, it's likely I'll experience a more formidable disease course.
However, reading your blog is encouraging. I'm not a very physical guy. I can deal with awful balance and limited mobility. It's the cognitive symptoms which really scare the crap out of me. It is encouraging to read precise technical posts interweaved between the sclerosis-related material.
I'm a writer (mostly for interactive media, though my background is IT), and over the last month I've noticed myself coming up short for words. Even more troubling, I often conjugate words incorrectly. I'm hoping it's stress-related, given all the anxiety/depression of diagnosis.
It's good to see you've been dealing with this for years and manage to keep exceptionally sharp.
It is funny, but I have thought about this particular issue many times in the past and I am reminded of a section from Carl Sagan's Contact:
"Dreams," she said. "Last night, when we were all dreaming, you were inside our heads, right? You drained everything we knew."
"We only made copies. I think everything that used to be in your head is still there. Take a look, Tell me if anything is missing." He grinned, and went on.
And at the same time I am reminded of some of the sage words of comedian Emo Phillips:
I used to think the brain was the most fascinating part of the body. Then I thought, "Look what's telling me that."
You can probably see where I am going with this. :-)
The truth is that it is very hard to think about one's ability to think being compromised, at least in any sort of productive way -- it is too hard to objectively know what is going on.
For example, I know for fact that I do not remember things as well as I used to, but everyone around me (whether girlfriend, ex-girlfriend, friend, or colleague) has trouble believing it since I seem to remember things from ages ago without too much trouble. So how to explain that I compare myself against me, not against others. I don't want to be as good as everyone else, I want to be as good as myself.
So is this feeling that I am not doing something as well as I used to in my imagination as people around me claim? Is it some totally unknown problem? Is it the M.S.? Or is it an expected side effect of breathing in and out for more than 13,000 days consecutively?
But as someone who has redefined what I do for a living several times over the years to make sure that M.S. doesn't have the chance to "get the best of me", I can say that the best way to make it through is not think too much about these issues.
Truth is, it has gotten the best of me a few times. But I just get up, tell it to FOAD, and keep going. :-)
So I let people notice what is happening, and react to what they are saying. Even more important, I react to the things that they may not be saying so that I know if they think I am forgetting things. Or if they think that I'm not thinking through on something.
And thats the way I can do it. And that you can too, Brent. :-)
And then if you want more, you can work with all of the little tricks to remember stuff and think about stuff that a neurologist will point you to. Those tricks help in much more definite and serious disorders than anything M.S. can really do to you, so pick and choose among them as you decide how best to make sure that you never have a chance to slip.
But always remember that even though the claim that we use only 10% of our brains is horse shit, the truth is that the reason a person with M.S. can have a very bad evoked potential test while lacking actual symptoms is that our brains make new connections all the time.
The key for the visual evoked potential is to keep looking at stuff.
For the brainstem/auditory evoked potential to keep listening.
And for cognitive ability to KEEP THINKING.
Because if you do then you get to win out against a disease that is not nearly as thoughtful about how its strategy is going to work out.
Maybe that's a good reason to keep working, and blogging, and living. :-)
This post brought to you by 憶 (U+61b6, a Han ideograph used for recalling, memory)
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