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14. “Where the hell am I?!!!”

Took a day off from writing yesterday. I couldn’t write. All afternoon I busied myself with blogging, news, listening to physics lectures. ANYTHING that would distract me from thinking. I was alone at home and began calling anyone I could think of for support, starting with my doctor.

“What’s up, Joe?” She asked in her usual easy going manner.

“Hi Grace. Listen, I’m not sure if I’m calling you just for reassurance or whether it’s something as my doctor you should know…”

What I told her was that on my way home from visiting with my friends Steve and Ellen, taking the same route I’ve been down hundreds if not thousands of times before, I suddenly had no idea where I was, where I was going, where I had come from…

I’m not sure if I knew who I was, but I might have since I realized I was having an “episode” and didn’t panic but tried to figure out what had so suddenly vanished. I looked around and recognized nothing. I kept driving and looking at the street signs. No help there, I didn’t recognize them. I figured if I just kept driving straight I would eventually see something I recognized.

Sure enough, about four or five blocks later I came to Ocean Street, which is one of the main streets in Santa Cruz. Got it! So I’m going in this direction across Ocean… That means I’m on my way home… Right! And I was at Steve’s house before. Got it!

And I was back. Back, in the usual movie that each one of us creates in our minds. You know the one you always star in every morning till sleep time. Sometimes in dreams as well. What is it that gives it the feeling of a movie? Continuity. There’s a system in our consciousness that stitches events in time together to form a narrative of sorts of our experience. I think it’s that system that the MS occasionally interferes with.

A very weird experience. It felt as if someone had taken a scissors and cut the movie.

“What the?…..Where the hell am I?!!!”

It didn’t last very long. Maybe 30 seconds or so. And I recovered and even remembered to drop something off for my wife in town before going home. I was proud that I didn’t forget to do that.

But once I got home, things changed for me. I thought about the experience and began building all sorts of fantasies as to where this disease was taking me. None of them good.

I got caught in a “fear loop” that whirled round and round getting scarier with each revolution.

“What if next time it lasts 30 minutes?” “What if next time I won’t recognize Ocean Street.” “What if next time I forget how to drive?” On and on and on…

I took two valiums and got into bed to wait for my wife and son to come home. At this point I felt emotionally almost paralyzed. “Maybe I’m overdoing this?” I thought to myself. “Maybe NOT too…”

Once again it’s important to point out that this experience doesn’t “feel” like anything. If I hadn’t been driving, just walking, I might not have even noticed. That’s what makes the whole thing so frightening. You don’t really know that it is happening till afterwards. And then it makes no sense.

I mean, why did I lose it there and then? I thought back over everything that had happened before. I was looking for any sign of a cause/ effect, if you will. The only thing I could come up with was that I hadn’t taken my second Provogil of the day which I usually have at noon. The episode happened around 1:30. But that didn’t really make any sense. The single Provogil works all day, the second is more a booster to keep me going past 5 PM.

After I called the doctor I called my father. He had trouble understanding what it was that I had experienced. That’s when I came up with the metaphor of the film being cut.

“Now you listen to me,” he said with as authoritative a tone as he could muster, “Write that down!”

“I can’t. Not now. I’m in bed.” I explained.

My dad went on, “Alright but be sure you include that in your book. That’s an amazing description that gets the idea across beautifully. Your mind is more than fine, it’s superb. You have nothing to worry about, OK?”

“Thanks Pop. Coming from you, that means a lot. You are after all, the master of words.”

After I hung up I was left with the question of how it was possible to express myself in a way that even dad thought was good while at the same time not knowing where I was.

Sometimes when speaking, I just can’t come up with a word, even a common one. I wave my hand and point to my head, “Mad Cow!” Usually I can get the word after grinding for 10-30 seconds, but not always.

I know now that I have gotten completely garrulous and so usually preface any long remark by asking if I had told my audience this before. More often than not, I have.

That’s another nice thing about writing. As long as you read what you’ve written, you don’t tend to repeat yourself.

What sort of a “cure” am I looking for from the ayahuasca? Do I seek to simply stop any more relapses or do I hope to get my mind back?

Sigh!

As I’ve said before, when it comes to health, hope springs eternal.

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April 18, 2008 - Posted by | Uncategorized

2 Comments »

  1. Have MS myself and think I’ve got a good solution for you. I am a neurosurgical nurse who was diagnosed with MS 5 years ago at age 53. I have been drug free for the entire time, insisting on getting to the root of this thing myself. What I have discovered in these last 5 years could probably fill a book. Suspect you’ve had some interestesting and insightful times yourself. I am MORE than happy to share with you or anyone all that I’ve learned about MS through my own experiments and alternative treatments. Best of luck. Anne

    Comment by anne parrotta-rinaldi | April 20, 2008 | Reply

  2. Please let all of us know what you’ve learned….

    Thanks for your support.

    Joe

    Comment by josephwouk | April 20, 2008 | Reply


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