More MS news articles for July 2001

MS diagnosis brought uncertainty to journalist's life

Web posted at: Jul 8 2001 1:58AM

Editor's Note: This column was written roughly three years ago by journalist Leslie Burleson shortly after she was diagnosed with Multiple Sclerosis. Ms. Burleson died Jan. 22, 2001 while she was working as a reporter for the Reporter-Telegram. The Reporter-Telegram team is dedicating its ride in this year's MS150 in memory of Ms. Burleson. This column was discovered after Ms. Burleson's death.

As I closed my right eye to put on plum-colored eye shadow, it disappeared. Well, someone else could have seen it, but I couldn't.

Unusual as this seemed, I didn't panic. Having worn glasses since I was eight, having adult vision somewhere in the 20 to 800 range, I'm used to blurs. I have blurs in the morning, blurs in the noontime, blurs in the night (not quite as evocative as blues in the night, I admit).

But during the decades of blurs and squinting, I had never had an eye disappear before. In fact, the vision in my left eye was minimal -- an abstract painting of gray shapes.

Dodging the traffic on the Southwest Freeway, my left eye gave me a hint of depth perception and my right eye got me the X miles to work without mishap. My job as a copy editor, reading and generally messing about with words all day, was appreciably harder, but doable. I didn't tell anybody about my problem for three days.

Then my friend Alan came to take me to dinner. Well, we were both supposed to eat at a Caribbean restaurant, sampling dishes and commenting on them so he could get a gig writing restaurant reviews. He had already gotten lost once trying to get to the Reggae Hut, and on this trip I wasn't much help. I had a map of my own, but some considerable difficulty reading it.

From some fatty oxtails that were, to use a childhood expression, icky, to some sublime shrimp and a fabulous smoothie, we chomped our way through the meal. I told him about my little difficulty. "I've never been in the hospital, I've never been really sick, so I've always thought if something went wrong with me it would be really bad," I explained superstitiously. He commiserated briefly, and we went to the first nighttime Gay Pride Parade in the country, two straight people checking out the scene.

The floats were brightly and colorfully lit; clever touches, like phosphorescent string outlining the instruments of a marching band, took advantage of the darkness. I enjoyed it fully as much as a clear-sighted person would have. On the way back to the car, I tripped on a well-concealed hole just slightly larger than my foot, but the lighting was so dim that I might have done that anyway.

I adopted the habit of testing my vision, which to the uninitiated might have looked like winking. The next day I parallel parked without incident, and reviewed a play. But the blur never went away. I bumped into a woman approaching from my left side, and I never saw her until I felt the impact of her flesh on mine.

By Day 5, a Monday, a minor-league panic had set in. I called my PPO-mandated managing physician, having been told by the personnel professional at my job the M.P. was required to guide me into the maze of specialists and sub-specialists. And just in case I was one of those loonies who got off on going to the doctor, they could keep me in check.

Since I was not only not one of those loonies, but only go to the doctor slightly more than an observant Christian Scientist, I required no such rein. For three hours, I waited in a froth of worry, having left a message with an answering machine at the doctor's office.

There ensued a ping-pong flurry of "you have to get a referral -- no you don't -- yes you do -- no you don't." Impatient and angry by this time, I called my eye doctor from my former town 55 miles away. His minion looked up my chart in preparation to doling out an appointment time. "Oh, you have a cataract," she said, reading his notation.

I had totally forgotten that during this rushed, brusque examination of me 19 months before, Dr. G had told me I had a congenital cataract. When I became understandably concerned, he impatiently told me that it wouldn't affect me. Well, it looked like he was wrong.

Apparently, this cataract had drifted across my field of vision like a cloud across a summer sky. Like the fool who acts as his own lawyer, I put on a white coat and diagnosed myself -- I had a cataract. Not great news, but not a brain tumor either. I mentioned this diagnosis to the few people I had told about my problem, and calmed down.

Since Dr. G couldn't see me for two weeks, I set about trying to find a local ophthalmologist to confirm my diagnosis and cure me. With the blind ignorance of a voter selecting a judicial candidate they know nothing about from a list of names, I picked someone whose phone number told me he lived in the neighborhood. I told his receptionist that I had a cataract. "Oh, he doesn't do cataracts," she said. "I'm groping in the dark here," I said, not making an inadvertent pun. "Please tell me who to call."

"Dr. Gillett does cataracts," she said kindly. Due to a cancellation, Dr. Gillett could see me in two days, which beat two weeks by 600 percent. I wondered how fast he could schedule me for surgery. "Oh, they'll just laser it right off," a few helpful souls told me.

Dr. Gillett's office looked like a museum of expensive eyeglasses, with glittering models in glass cases. They belonged to one of his associates, but they gave the room a certain tone that was more Neiman-Marcus than TSO. I read in some office literature that Dr. Gillett was the team doctor for the Houston Rockets. If only I'd taken an elbow to the eye from Patrick Ewing, I would be in the best possible hands.

A kindly eye apprentice took me through a test for glaucoma and put dilating drops in my eyes. But she also gave me some bad news. "The kind of cataract he was talking about is really more like a fleck," she said.

Dr. Gillett agreed ... "You do not have a cataract," he said definitively. "Oh, no," I said quietly, guessing that this would be no quick fix. With alarming speed, he called three floors upstairs in the same building (my copy editor's eye had spotted a spelling error in the edifice's sign on the way in, referring to a "tenet" instead of a "tenant").

Dr. Gillett's technician patted me on the hand as I waited to pay, and said she would pray it wasn't anything serious. I grew simultaneously panicky and touched.

Still dilated, I waited to see Dr. Fish, who had a large, well-populated aquarium in his shared vestibule. He made small talk, doing various tests on my eyes, and sent me in a back office for a visual field test. This was administered by a young man named Eric, who warned me it was "probably the most boring test you'll ever take."

Eric patched my bad left eye, and gently stuck my face into a large white cone. Giving me a finger button worthy of "Jeopardy!," a show I've always wanted to compete on, he told me to buzz as soon as I saw a light whiz into view. The lights started off bright and large, about the size of a pencil eraser, but became smaller and dimmer.

My neck hurt, and it was boring. He finally switched to the other eye. "This will be short," I said with a touch of black humor. After all, I hadn't been able to see the E at the top of the chart with my left eye. I re-coned my face and spotted a few whizzing lights, but soon Eric went off to color in my visual field.

Dr. Fish returned. "You have what is called optical neuritis," he said. "It's an inflammation of the optic nerve."

"Can it go to the other eye?"

"Probably not."

"What can you do for it?"

"It goes away by itself."

"How long does that take?"

"Weeks or months. Not years."

Dr. Fish added there was one possible treatment that might speed up the regaining of my sight -- getting steroids intravenously for 3-7 days in the hospital. Not one word in that sentence sounded good, and I refused.

"They've done studies over a period of years, and the people who have had steroids and the people who didn't turned out about the same," he said.

"I have to tell you, just in case you're going to get on the Internet tonight, there is some connection between optic neuritis and multiple sclerosis."

I gulped. Of all the diseases I dread most, MS is in the top three. "How much?"

"Twenty percent."

Seeing my fallen face, he said that he had a female relative with MS and she was very crippled. He did a brief contortion of his body into her posture, implying kindly I undoubtedly didn't have it.

In a welter of dread and confusion, I drove home.