More MS news articles for October 2000


An Interesting Four Months

http://www.themestream.com/gspd_browse/browse/view_article.gsp?c_id=191456

by Keith Snyder
September 28, 2000
Originally appeared in very slightly different form in my newsletter, January, 2000

It's been an interesting four months.

In October, a dozen copies of Trouble Comes Back, the third Jason Keltner book, just barely made it to Wisconsin and onto the dealer tables at Bouchercon 1999 (the "World Mystery Convention"). It was a fun convention. The previous year, in Philadelphia, I told Gary Niebuhr (one of the people in charge of the Wisconsin event) that I'd compose a musical theme for his convention.

Since we were sitting in the bar at the time, he apparently thought I was kidding. But I did one, and they ended up using it for the opening and closing ceremonies and a few things in between. The last day, as we were all milling in the lobby, trying to remember how to check out of a hotel, Harlan Coben correctly identified every TV show theme I'd alluded to in my forty seconds of mystery music, which tells us either that I'm pretty good or that Harlan watches too much TV.

The air in the hotel was extremely dry, and I found myself dehydrated and fighting the flu. Sore throat, the usual. The flight home was awful—I was congested, so it felt like my inner ears were going to explode. (The emergency room doctor checked for burst eardrums and found nothing wrong—but I'm getting ahead of myself.)

I was still feeling pretty lousy the first couple of days back in New York, but I dragged myself in to my day job on Tuesday morning. ("Web producer"—my friend Tom asked if that means I'm a spinnerette.) Then I dragged myself back out a few hours later when it was clear that wasn't going to work.

Wednesday, I got a call from the day job. The psychotic blowhard in charge of the department had gone shrieky when she found I'd been out Friday and Monday (for Bouchercon, all arranged previously), so I wasn't to come in on Thursday until some of the less volatile elements had time to calm her down. When this happens to Atlas rockets, we just blow them up before they hurt anybody. I'm still not entirely clear on why we can't do this with department heads, but I've learned not to ask these questions in public.

But it was a nice day and I wasn't sure I wanted the job anyway, so I took my laptop to the Fall Cafe where I write sometimes, had a bowl of vegetable soup, and chatted with a guy who owns a home recording studio in my neighborhood.

About an hour into this conversation, I start feeling a little sick—must be the soup—so I wrap up my conversation with the music guy and, feeling worse and worse, pack up and start walking home as fast as I can. I'll leave out the part where I just barely make it home in time to see the soup again, something that never happens to me.

Thursday night, I'm still feeling terrible, and beginning to experience double vision and nausea. Never heard of food poisoning doing this, but okay, whatever.

Friday morning, the double vision is worse, and I finally complain enough so that Kathleen realizes something might actually be wrong. We go trucking off to Maimonides Medical Center in Brooklyn, me flat on the back seat because sitting up with the bright street whipping by is too nauseating.

This is where the emergency room doctor comes in.

I understand making me lie there with almost no attention for several hours: It's an ER, so somebody whose head fell off in a shaving mishap should see the doctor before I do. It's only fair. I also understand why I went more than twenty-four hours in lousy condition without eating, even when La Diva made a fuss: They're understaffed, and it's nobody's job to make sure patients don't starve. I also understand that when the blur that was my doctor asked how many fingers, and I said the four I knew he was holding up and didn't mention the fact that I saw them twice, he interpreted this as meaning that I could see. I even sort of understand why, after Kathleen helped me hobble blindly to the men's room, Dr. Blur's conclusion was "You were able to get to the men's room, and you passed the visual acuity test. There's always the question of whether the patient is being truthful."

I beg your pardon?

No, we protested, too surprised to get mad yet. I really can't see. Did you not notice that I was moving very slowly and leaning on the arm of my wife?

Uh, yeah, okay, said the doctor, and left, and we sat there looking at each other (or would have, had we both been able to see), saying What the hell? without actually saying it.

Some blurry, indeterminate amount of cacophony later (the human and electronic noise in an er is incessant), another doctor shows up. Follow my finger with your eyes, please—left, right, top, bottom. I can feel the muscles behind my eyeballs pulsing oddly when they try to go left and right.

She calls the ER doctor over and demonstrates: Follow my finger, please, Mr. Snyder. Now, we can see that Mr. Snyder is very politely following our instructions and telling us what is wrong. Do you see that bounce? That is not normal. There is something not right here.

Thirty seconds, max, from "Hello, Mr. Snyder" to "Dr. Blur, you are a dangerous idiot who should not be allowed behind a stethoscope." (That's a paraphrase.) Please, God, bless competent neurologists and grant them anything they want. Also please try to instill a little more common sense into young male doctors who think they know something. Thank you. Amen. Oh, and if you're up to it today, a career break for La Diva would be nice. You gave her the voice, after all—it's only right that you give her a little boost. Thanks.

So I'm admitted. My roomie is a guy in his seventies. I don't get to know him until I'm less woozy—I've had I.V.s going this whole time and I'm pretty wiped out from that and hunger and stress and not being able to see—but on our last day together, he tells me all about working for Army Intelligence in World War II.

So we'll skip the part about the CAT scan, which wasn't so awful, and the MRI, which wasn't so fun but was more fun than the spinal tap, which was performed by someone who's never done needlepoint before, and the fact that we kept asking how much things were going to cost since we don't have insurance and kept hearing "I don't know—don't worry; Medicare will take care of it," and the food, which generally didn't even show up and when it did it was frankly disgusting (I'd never seen a pus omelette before), and the night staff, who had, and this is not an exaggeration, pizza parties all night with lots of yelling and laughing, only a few feet from all of the open doors to the rooms where the patients—many of them elderly and almost certainly intimidated—lay awake. The only staff who didn't participate were the silent, dark little women who came into our rooms at regular intervals, turned all the lights on, took someone's blood pressure, and didn't turn the lights back off when they left. I finally gave up on sleeping one night and sat on the corner of my bed and watched one-eyed for half an hour as one of the staff, a pretty big guy, told a long, egomaniacal story about threatening a supervisor and getting away with it. He pantomimed punching the supervisor out, several times, to an uproar of raucous laughter. When the party finally thinned out a little, one of the revelers passed my open door and was surprised to see me sitting up and watching.

"Can I get you anything?" Falsely innocent, eyes wide.

"Yeah. You can be quiet."

"Would you like your door closed?"

"And you can be quiet."

("That was good," my ex-Army roommate chuckled conspiratorially the next morning. I wondered how many of those open doors had old people behind them who were too afraid to speak up for decent sleeping conditions. I paid attention to who was in the rooms the next morning as I made a slow circuit of the floor in my gown. Mostly elderly. Mostly, I assume, sleep-deprived.)

We'll also skip the part where I'm refused food because I'm scheduled for an MRI.

"He just had an MRI," my wife insists.

"No, he's scheduled for one. Maybe he had a CAT scan. Are you sure it was an MRI?"

"Well, let's see," La Diva says, thinking. "It was through a door that had 'MRI' on it in great big letters."

"Well, we don't have any food for him. He's not in the computer."

So we'll skip all that, and we'll skip the well-intentioned and well-appointed women who appear two or three times a day to ask how you feel and then leave. (They're not hospital staff. Who are these people? When another gaggle of two enters my room, I ask who they are and what they're doing, and they beam at me and say they're from a local synagogue and this is their good deed for the day. They say it proudly, as though they're doing something of value. Oh, I say, and I don't say Uh huh—glad my infirmity could help to prop up your feelings of self-worth. Now kindly get the hell out, and next time you're overcome by the urge to help the world during your leisure time, get a manicure. It's way more useful to everyone.)

After days and nights of this, it became Monday afternoon, and the neurologist came in and said that the results of the spinal tap and MRI, which she'd been soft-pedaling all weekend, indicate demyelination disease, also known, when there's a little more evidence, as multiple sclerosis.

 I see.

So Kathleen's told that I have "probable multiple sclerosis," and she's very upset because she feels the soft-pedaling was dishonest. She's probably got a point but I don't care because it doesn't bother me to be "handled" like that. I'm instructed to make a followup appointment, and we go home.

Did I mention that this all happened right when Kathleen was about to do the dress rehearsal and first performance as Carmen? She'd had almost no sleep in days, and no practice time, and since voices are made of muscle and hers were distraught and fatigued, she wasn't singing in top form. We talked about it. I told her we moved here so she could be an opera singer, and I'd be really upset if she cancelled. She finally agreed, tentatively, but was resigned to doing less than her best. She did poorly—by her standards—at the dress rehearsal.

All that week, I stumble out of bed in my eyepatch, tumble into a waiting car at the curb, go swerving over potholes, eyes closed in the back seat, the car stinking of smoke, dump myself out at the medical center so I can take a daily steroid I.V., and then another car makes me sick again on the way home, where I stagger to bed and switch off. Kathleen said it was as though I just wasn't present for a week. All I remember is a string of brutal car rides, the sickening smell of cigarette smoke, being stuck with needles, and the relief of going gently horizontal in my own bedroom and losing consciousness. Tuesday morning is the worst, and I have to find some private space in the men's room to sob for a few minutes.

My friend Jim went with me Wednesday morning, and I felt guilty for not being sociable. I'm not sure when I started caring about that, but it's a bad development.

Sometimes "optic neuritis" is permanent. But this time around, anyway, I was lucky. After a couple of weeks, the double vision reconverged. Things still looked oddly three-dimensional, and there were gaps in my visual field—not optical, but neurological gaps, not filled with darkness or blurs; but simply missing from my perception—but one night I felt brave enough, so we walked a block and a half down dark streets and intersections I couldn't perceive fully and had a cup of coffee at a little place on Smith. Another of my symptoms came into play on the way there and back; I hadn't realized that there was such thing as a "walking in a straight line" sense, but there is, and mine was broken. I kept listing to the left. No dizziness, no disorientation. Just suddenly, I wouldn't be in the middle of the sidewalk anymore. Oops.

For two months, I barely left the apartment. At first, it was because I couldn't, and after a while, it was because it had been too long and I was afraid to. I didn't see Kathleen's debut as Carmen. When I could see well enough, I spent most of my time online, posting to rec.arts.mystery and AOL message boards.

I disclosed gradually, choosing who got to know when. How about this person? No—I don't want to deal with her reaction right now. What about that person? No—he could cause workplace problems I haven't thought through. My vision would improve a little, tableau for a while, then improve slightly again.

I stopped wearing the eyepatch, and I saw Kathleen's second performance as Carmen. She was excellent. She always sings better than she thinks she does.

The Black Orchid Mystery Bookshop in Manhattan hosted my publication party. It felt good to go out. Unfortunately, it was a World Series night, so turnout was very light. That was my only appearance for Trouble Comes Back, my best book so far.

It's been an interesting four months. In early January, I started a new day job, "web producer" again. In mid-January, visiting Los Angeles with Kathleen, I hung out with Blake for a while and we came up with a concept for a feature-length digital video production I intend to shoot later this year. (About a week ago, I flew out again and we finished the rough outline.) At the end of January, Colla Voce (the NYC classical vocal group Kathleen co-founded) performed one of my compositions. I've got two new CDs for sale on the web, with a third in the works. Jason #4 still isn't sold, but it's a third finished and there's talk.

The Dalai Lama says that if there's something you can do about your problem, then there's no reason to worry, and if there's nothing you can do about your problem, then there's no reason to worry. I'm up until this puts me down. I will probably begin daily self-injection at some point, and I'm taking all the vitamins and supplements La Diva decides I should take. That's about all I can do.

A couple of weeks ago, we were watching TV and a blind spot appeared in the middle of my right vision. A geometric neon rainbow appeared, extending "offscreen right" in a shallow arc from that spot. The people on tv had half a face each. It went away in half an hour. In a year or two or five or twenty or fifty, I'll either be just fine or I'll be incontinent and blind, shaking uncontrollably in a wheelchair, or I'll be something in between. So this year, I'm finishing Jason #4, trying to finish my cycle of songs based on text by Richard Feynman, and trying to appreciate what I have. And making Road Movie with Blake. It's a great story, and after having done 1 is for Gun, I know how to make it for five figures. Inquiries from investors are welcome.


Followup
September, 2000

The diagnosis was changed from "probable multiple sclerosis" to "multiple sclerosis." My second MRI, last month, revealed only the same lesions that showed up on the initial MRI. That means there's no apparent degradation of my condition.

We have not made Road Movie. Instead, we made another short, "Sell in Hell." Photography was completed this month, and I have not yet begun editing. The footage looks fantastic—here's a frame capture.

I finished the Feynman songs, Jason #4 was sold to Walker & Co. for publication in 2001, and I've got 4 CDs available now. So things are going all right, at least for now. We'll see what the future brings.

—Keith

Keith Snyder's Web Site is at http://www.woollymammoth.com/keith/