Ménière’s Disease Part 4

I first met Ménière’s in 2000. One morning in November I woke to a bell clanging loudly in my ear. This aural racket lasted a day before I visited my primary physician. He immediately referred me to a neurologist whose tests revealed nothing wrong with my brain. Next I met with an ear, nose, and throat specialist. He diagnosed Ménière’s disease.

            Flash forward to early May 2006. By then, the tinnitus was often so ear-splitting that I’d debate hitting my head against a wall to knock myself out. I’d lost 70% of hearing in my left ear. The specialist had told me I’d ultimately lose all my hearing in both ears and become totally deaf. Occasional vertigo sent me tumbling to the floor. This type of vertigo lasted only a few seconds or minutes. Nothing rotated. The world briefly whirled, then settled in place. 

            Throughout those years, the specialist dealt simply with what presented itself as it presented itself. First I learned about tinnitus. When I lost hearing, he told me that was Ménière’s. When dizziness started, he added that to the list.

            After the May 11, 2006, incident, he didn’t explain why the vertigo had suddenly changed and become something quite different from what I’d been experiencing. Nor did he give me a name for what had happened. I don't think he or any other doctor knew why. Moreover, I suspect he had no term to offer me. 

            I found the descriptive words acute rotational vertigo episode in a posting by someone who had Ménière’s. I learned that some people with the disease face this symptom often, some never, and some only once. I googled the disease only after encountering this new type of vertigo. I hadn’t done so earlier because Ménière’s wasn’t affecting my life much during those six years. 

            As the summer of 2006 passed, I found words for each of the seven distinct aspects of Ménière’s that I'd isolated in my thinking about it. On any given day, I could be lightheaded . . . tentative . . . slurry . . . imbalanced . . . woozy . . . dizzy with simple vertigo . . . terrorized by acute rotational vertigo.

            This vocabulary spans the gap between “It's nothing to write home about”—lightheaded—and “Get me to emergency!”—terrorized by acute rotational vertigo.

            The night Ménière’s high-jacked my life, I wasn’t searching for words to pinpoint what was happening. I was alone in an alternate world that was spiraling my life out of control.

            My biggest fear was that I’d have an episode that wouldn’t go away—that rotational vertigo would become my new reality. For the next sixteen months, a strong sense of foreboding took up residence within me.

Ménière’s Part 3: Adrift

Four days after that May 2006 episode, I was able to get an appointment with the ear, nose, and throat specialist I’d been seeing for several years. Sitting in his office, I described what had happened. He motioned for me to talk faster.

            I speeded up my recital, trying to explain how scared I was that what had happened would not go away.

            His response then, as now, seemed cavalier to me. “Just live with it,” he said.

            “For how long?”

            “The rest of your life.”

            I stammered my terror. “You mean this isn’t going away? It’ll keep happening?”

            He nodded and then smiled. That smile perplexed me. I found myself wondering all sorts of things. Did he find all this amusing? Was he delighted that a patient now understood the complexity of his work? Was he choosing not to deal with my concerns because he had no answers? Had he ever experienced anything like this?

            Once again, I tried to articulate the terror within—the fear that this strange vertigo would entrap me one day and I’d never return to the real world. How could I live that way?

            “Others have,” he said. “You will too.”

            I drove home on Highway 36. Never, ever, should that specialist have allowed me to drive that car. He should have asked if someone was driving me. I fault him for this.

            I could have injured or killed myself and others if I had experienced that different kind of vertigo on the way home. I just didn’t think yet of the implications of what had happened four days before. It fact, it took me several weeks before I realized that I shouldn’t be on the highway at all.

            After that, I drove only the few blocks to the grocery store once a week. I always drove in the morning because that time of day I felt most normal. Later I discovered that I shouldn’t even have done that. I was an accident waiting to happen.

            I never saw that specialist again.           

FYI:

You are probably wondering what in the heck happened that May night. I wondered too. So on Tuesday my post will detail what I’ve learned about this disease and the vocabulary I’ve developed to describe and explain it to others.

            On Thursday, I’ll return to the cats with a story about Eliza Doolittle.

            I’ll complete the week with a story that happened in the seventh grade at St. Mary’s Grade School.

            In the weeks following, I’ll post additional stories about Ménière’s. Just skip right on by them if they hold no interest for you. The next posting after a Ménière’s one will always be about something different.

Ménière’s Part 2:One Fixed Point

The Ménière’s episode that began in the early morning of Thursday, May 11, 2006, lasted about ten hours. Here’s the second half of it as I lived it. After I vomit until my stomach clenches from emptiness, I crawl back into the kitchen . . .

 . . . reach up for countertop . . . grab hold . . . pull upright . . . stare at clock . . . numbers repeat . . . repeat . . . each number over and over . . . try to fix one number . . . try to find one fixed point . . . in midst of motion . . . can’t do it . . . can’t do it . . . can’t do it . . . concentrate on finding clock hands . . . can’t do it . . . can’t . . . can’t . . . try, Dee . . . try . . . figure it out . . . one hand on two numbers . . . 1 . . . 2 . . . what does this mean? . . . 1 . . . 2 . . . together . . . means something . . . don’t know what . . . 1 . . . 2 . . . 1 . . . and . . . 2 . . . yes . . . 1 . . . and . . . 2 . . . thought comes . . . twelve . . . 1 . . . and . . . 2 . . . is twelve . . . twelve means something . . . means something . . . something . . . dark . . . midnight . . . 12 means midnight . . .  I can think . . . I made a thought . . . my mind’s working . . . look down . . . nausea . . . look to side . . . bile . . . tears . . . snot . . . hear cry . . . help me, God, please help me . . . hear laughter . . . I’m laughing . . . inane . . . bedtime, didn’t believe in personal God . . . think . . .  Dee, it’s true . . . no atheists in foxholes . . . brain working . . . let go of counter . . . fall backward . . . body thuds floor . . . head bangs . . . bounces . . . lie there . . . heavy head . . . aching . . . headache . . . horrific . . . pain . . . no thoughts . . . slogging in mind . . . breathing heavy . . . lie in fog . . . brain fog . . . no thought . . . fog . . . heaviness presses down . . . brain heavy . . . time gone . . . gone . . . feel strength . . . turn over . . . breathing heavy . . . crawl to cabinets . . . pull upright . . . must know time . . . find hour hand . . . 2 . . . two o’clock . . . alternate between chills . . . hot flashes . . . have sudden thought . . . sleep . . . maybe sleep and wake in real world . . . crawl to kitchen door . . . through dining room . . . hit head on table leg . . . shudder . . . ache all over . . . in living room . . . grab hold of couch . . . pull body onto it . . . stretch out . . . reach for lamp . . . not real . . . space . . . which one’s real? . . .  which? . . . find it . . . switch on . . . fix eyes on top right-hand corner of ceiling . . . everything else moves . . . rotating . . . swirling left . . . blurring . . . moving . . . slow motion . . . ever left . . . corner steady . . . fixed . . . sleep . . . wake . . . room rotating . . . fix right-hand ceiling corner . . . sleep . . .

            When I wake at nine, the terror is over. Nothing rotates.

            I get up, feed the cats, and lie again on the couch. I sleep for sixty hours, rising only to feed the cats, visit the bathroom, and drink water. Each time I begin to doze I fear that when I wake, it will all be happening again. Everything will be rotating and I’ll be on the floor. What if it started and didn’t go away? Ever?

            I finally get up at nine pm on Sunday evening. An hour later, I pitch forward against a porch window. It shakes, but doesn’t shatter and I continue my fall to the floor, hitting my chin on the windowsill on the way down. That episode lasted for only five hours. The next day, Monday, I call the doctor. Foolishly, I drive to and from his office. Fortunately no episode occurs.

            But a day later it all happens again. 

Ménière’s Part 1: Night Terror

. . . sea change in head wakes me . . . groggily rise upright . . . pitch forward, fall sideways between wall and bed . . . bottom hits floor . . . head bangs wall . . . hard . . . feel movement . . . within . . . without . . . spin  . . . movement in head . . . sideways through right ear . . . nauseous . . . try to hold in vomit . . . comes up . . . hold it in . . . hold in it . . . vomit . . . gag  . . “ . . . what's happening? . . . what?” . . . everything spins . . . sheets strangle  . . . try to unwind . . . spin  . . . moon full . . . dimly lit room . . .blur of movement . . . everything rotating . . . right to left . . . walls edge around walls . . . windows move . . . furniture multiplies  . . . ceiling tilting . . . bears down on me . . . floor rising . . . vomit . . . tug  . . . get bedding loose . . . turn over . . . crawl through slime . . . where is door? . . . dark rectangles overlap . . . rotating in slow motion . . . which real? . . . which?            . . . reach forward . . . solid wall . . . solid wall . . . solid . . . open . . . hall . . . top step . . . fumble newel post . . . find it . . . try pull upright . . . everything spinning  . . . blurring . . . outside me . . . inside . . . pitch forward . . . will to lung backward from stairwell . . . thud against wall . . .  hand slams picture . . . falls . . . hits leg . . . pain . . . vomit on wall . . . oozes down . . . fall to floor . . . have to turn on light . . . try to claw up wall . . . fumble for wall switch . . . rotating  . . . multiply  . . . find it . . . click on . . . reach for newel post . . . which real? . . . which? . . . hand swishes air . . . everything multiplies . . . spindles move . . . too many for banister . . . which real? . . . all move . . . march downward . . . steps shift downward . . . pictures multiply . . . everything five . . . five shapes . . . moving  . . . overlap  . . . rotating round . . . round . . . nothing fixed . . . head heavy . . . effort to hold upright . . . pitch forward . . . start to topple . . .  grab for railing . . . real? . . . real?  . . . grip solid handrail . . . creaks . . . wobbles . . . how to manage steps? . . . narrow steps . . . steep . . . can’t sit . . . can’t bump down . . . will tumble to bottom . . . break neck . . . must stand upright . . . walk down . . . step down . . . somehow get feet on moving steps . . . which solid? . . . something must be solid . . . permanent . . . can’t figure out . . . thoughts oppressive . . . heavy . . . slurry . . . disjointed . . . weigh me down . . . pant  . . . hand trembles  . . . grip newel post . . . if lose rail, fall forward . . . have to descend steps . . . safe in kitchen . . . bathroom . . . gag . . . vomit in mouth . . . can’t hold it . . . spews on steps . . . which ones have vomit? . . . which real? . . . put one foot down . . . search for solid tread . . . only space . . . feel something solid . . . put foot down . . . bring down second foot . . . hold onto rail . . . lean left . . . vomit rises in throat . . . must keep down . . . can’t vomit on steps . . . could slip . . . fall . . . gag . . . grope for rail . . . find it . . . one hand gropes . . . finds solid . . . put other hand on rail . . . hold tight . . . one foot down into space . . . find next tread . . . second foot down . . . two feet on solid tread . . . next . . . next . . . body strains forward . . . equilibrium gone . . . everything  swirling . . . blur . . . nothing but blur . . . nothing  fixed . . . hold vomit in . . . hold in . . . gag . . . get to bottom . . . turn down hallway . . . nothing to hold onto . . .  pitch forward . . . chills . . . shaking . . . crawl down hall . . . through dining room . . . into kitchen . . . reach up . . . grab countertop . . . pull upright . . . click light . . . everything  rotating . . . swirling . . . blur . . . blur . . . multiplies . . . ceiling slopes . . . pictures moving . . . edging round me  . . . counter not in place . . . floor slanting . . . moving under me . . . hold onto countertop . . . hold on . . . hold on . . . hold on . . . bathroom door . . . hold on . . . click light . . . nothing  to hold onto . . . pitch to floor . . . bang forehead . . . crawl to toilet . . . vomit . . . violent vomit  . . . nothing left . . . stomach empty . . . eyes tearing . . . bile . . . yellow . . . stomach hurts . . . throat raw . . . snot dribbles from nose . . . body shudders . . . dripping sweat  . . . crawl back into kitchen . . . reach for countertop . . . pull upright . . . everything  rotates . . . floor . . . walls . . . ceil  . . . furniture . . . pictures . . . inside of head swirls . . . what’s happening? What . . . is . . . happening? What?

Dulcy's Story

Seventeen and a half years after she selected me, Dulcy died of kidney failure. Without her, the house felt soul-less. I missed her in the marrow of my bones.

            She’d been a constant in my life for almost eighteen years, moving with me many times from Ohio to Missouri to Minnesota to New Hampshire and then back again to all these places. She’d pawed my face gently when I cried. She’d sprawled on my lap as I hallucinated. She'd loved me through seasons of darkness and moments of giddy gladness.

            She’d never deserted me as had my dad and mom when I was five. She’d stayed with me through depression and fear and thoughts of ending my own life. She was dear to me in a way that no one else was.

            She died on July 6. Two days later I woke alert, compelled to go to my computer. As I sat in front of it, my hands automatically began to type. The first words that came were these: “At the end all that matters is love. My love for my human and hers for me. I have planted the memories of our life together in her heart. She will find them there when I am gone and they will comfort her.” I stared at the words, realizing that this was Dulcy speaking.

            Each morning for the next two months I spent an hour at the computer before beginning my freelance projects. During that hour, I sat before the computer, hands poised, waiting for Dulcy’s words.

            She never failed me. Each day she shared memories of our life together. I’d forgotten these stories, but from some place deep within me—that place where Dulcy dwells in Oneness with all creation and with me—the remembrances of our life together spilled forth. Even in death, she gifted me.

            After completing what writers call “a first draft,” I began to edit. I switched from the openness of the right brain to the critical editor of the left. Slowly the story glued itself together.

            For a year and a half, I sent out query letters about Dulcy’s story. In return, I received only form rejection letters. Then in April, nearly two years after Dulcy died, an editor at Crown responded with a typewritten note. In it, she said that if I’d cut half of the 42,000-word manuscript, she’d be happy to look at it again. She advised me to concentrate only on Dulcy—no other cats.

            Within three days, I did the cutting.

            I sent the manuscript back to her.

            Two months later I had a contract.

            A year later, Crown published A Cat’s Life: Dulcy’s Story. 

            Another gift then came my way: The publishing house decided to hire Judy J. King to illustrate the book. A truly gifted artist, Judy captured Dulcy’s sweetness. Her cover was as lovely as the one that later enhanced the story of Dewey, the library cat. I think Dulcy and Dewey would have been great pals.

           The royalties from Dulcy's hardcover enabled me to do three things:

·      Buy a new Mac.

·      Take six months off work to write.

·      Travel to Greece for four weeks to research a novel I’d been aching to write since I’d been in the sixth grade and studied World History.

            One of the joys of being published is the letters a writer receives. I’ve read many letters from readers who have somehow gotten hold of a hardcover or a trade paperback copy of Dulcy’s book. They write to tell me how the book has touched their lives and changed their relationship with their pets.

            I know this pleases Dulcy. It certainly pleases me.

FYI:

Next week's postings will be on a disease with which I've struggled since 2000. It has taught me many things, especially that I have little control over my life. I can control my decisions, my response to the people and events of my life, and what I write. That's about it most of the time. 

          As you read the three postings, you may have questions about the disease. If you do, please query as a comment or e-mail me. In a future posting, I'll answer, to the best of my knowledge, any questions or concerns you have. 

            I hope this long weekend is being enjoyable for you as well as safe. 

Peace, 

Dee