Chapter One

March 17, 1997, was a very windy day in New York City. Walking up Amsterdam Avenue to the gym that morning, I wanted to turn around and go home. The old me would have. My apartment was dark and inviting, my bed was warm, and the gym would be there tomorrow. But then I thought of the Muffin Shop, which was opening in an hour. If I worked out for an hour, I could stop by on the way home for a muffin and coffee to go. One of the great pleasures for me was sitting at my new kitchen table with my muffin and coffee, planning the day. I had a big day ahead of me, so I kept going.

I'd been listening to Annie Lennox a lot on my Walkman. She was instrumental in some of the recent changes for the better I'd made in my life. Annie didn't sing -- she spoke to me. "Please get your butt on the treadmill, Jenifer," she said. I always loved that English accent. Right-ee-o, Annie.

After six months, I had worked up to thirty minutes of running at 5.0 on the treadmill. Then I'd stretch and do a hundred, make that seventy sit-ups on the mat. I looked around the gym for my friend Billy Baldwin, who did sit-ups with me, but he wasn't there. The sit-ups were harder that morning, which was strange because I had a pretty strong stomach. I had to stop a few times. A handsome trainer walking by asked if I was okay. I said that I certainly thought so. He winked at me and kept going. Sixty-seven...sixty-eight...Talk to me, Annie. I dripped sweat. Hard-core athletes dripped sweat like this. I thought I was getting into some kind of shape. My sister Valerie would be proud.

Back at home I sat at my new table, feeling its smooth, sturdy contours. It had been a major purchase for me, the perfect Williams-Sonoma starter for a woman on the verge. I had my whole table in front of me, my blueberry muffin in hand, and a boy in my eyes. I hadn't met the boy yet. That would be happening tonight at Raoul's, a popular restaurant in Soho. My friends Martha and Merrill were going to spy on my date and me from another table. If it felt right, I'd give Martha the high sign, and the four of us would go dancing from there. Dating was something I didn't do much of in my twenties. I think people were a little worried about me. I kept saying I wasn't ready, I wasn't ready. Then, when I realized I'd never be ready, I told my friends to fix me up, and suddenly there was an all-points bulletin out for an eligible guy for me. On some level, I still thought that blind dates were for losers, but I was learning to keep my eye on the prize. What I wanted most was to love someone and to have children. Maybe tonight was a step in that direction. It probably wasn't going to be West Side Story, but maybe it would be. Could be...

I sipped my coffee, forever my drink of choice. It was all about this kind of loving self-discipline: one muffin at a time, not two, eaten like a human being sitting at my gorgeous new table, not out of the bag on the run. Most of my friends were married and having babies or inviting me to showers or lamenting not getting married. I was starting to bask in self-reliance -- I was working hard, step-by-step, to make my dream life a reality. My design for living was simple: I drew on the lessons of my girlhood. I was taking good care of my body. I was making a safe, comfortable home for myself. I was on a roll work-wise. The ideas came fast and furious: Maybe for my next birthday I'd register at Bloomingdale's. Why should I have to wait for a fiancé to get a couch?

"Oofah," I said, pushing back from the breakfast table. I was really late for work. I suddenly remembered the loofah brush and lavender soaps I'd picked up from Crabtree & Evelyn for my date. They were still in a shopping bag on the floor in my closet. When I bent down to get it, I got stuck in a crouch. As I got to my feet, and it took a minute, my burgundy silk shirt hanging from above fell into the Crabtree bag. Surely that was a sign. I'd do the burgundy silk shirt tonight, with my black jeans, and the brown suede jacket...or my black Donna Karan coat. The coat was dressier, a three-quarter length, and gorgeous. Keep him guessing with the combination of dressy on the outside and totally casual-comfortable underneath.

Running for the shower, I waved to my new Fiestaware plates stacked on the kitchen counter. I hadn't cooked a meal in years, but I would cook soon. I'd start with something simple -- a pasta, maybe? Then came my really weird shower experience. As I unwrapped my loofah and my bathroom filled with steam, I imagined my date -- rumored to be very handsome -- watching me walk oh so elegantly through the steam toward the shower. Like those showgirls through dry ice in Las Vegas. But that wasn't even the weird part. Suddenly I felt oh...so...bogged down, as if I were wearing a wet wool blanket. I went into slow-motion showering, loo...fah...ing, and drying off. The towel was heavy, too, a second wet wool blanket. Was there such a thing as working out too much?

I blow-dried my hair in a hurry, never a problem. My hair was my calling card -- thick chocolate chunks of excellence, very Marlo Thomas in That Girl. My hair had gotten me through a lot in life. When I was posing for my head shot in second grade, I brushed my hair carefully around my slightly chubby face. I knew instinctively how to use my hair to create illusions of lankiness and great beauty. For as long as I could remember, I led with my hair.

As I ran down Columbus Avenue to catch a cab, I had my own That Girl moment. I saw my whole life coming toward me: I saw him and them, a husband and children, as true possibilities. I saw my sisters Valerie and Meredith walking in stride with great purpose. There I was between them, walking confidently. I looked pretty good. Diamonds, daisies, Broadway -- wow. The wind really kicked up. It was so strong it pushed me backward. I sweated and slowed down on the sidewalk just as I had in the shower. I tried to fight the wind. I tried accelerating on the human highway of tourists walking to the St. Patrick's Day Parade, but there was nothing in my tank. I was alone in a sea of Kelly green. I wanted to tell everyone it was a great day for the Irish -- and me, too -- but they just kept passing me. I wanted them to know I was going to Raoul's that night. I wanted to tell them that I was lucky, and that I had my whole life ahead of me. Did I mention the wind? It was really blowing. It had a personality now -- it wanted me dead.

I felt instant relief at the office with my feet up on the desk. My office was absolutely gorgeous, a dramatic departure from the alternative spaces I'd worked in as an off-Broadway theater producer. It was twenty marble-appointed floors up in a luxury midtown high-rise with great air-conditioning and a view of Central Park -- salary so not commensurate. The job itself was a little disappointing. I was doing public relations, which I didn't care for, but in the end my office was the perfect front. Behind closed doors, twenty floors above Central Park, Valerie, Meredith, and I were planning a creative coup. Since high school, my sisters and I had had the idea of starting our own movie studio, and I was finally putting that plan into action. After years of hard work, Valerie, Meredith, and I were finally pursuing our best laid plans of childhood. It had taken us a while, but I felt sure that our hard work was about to pay off.

Meredith walked into my office for one of our top-secret working lunches just as my boss, smiling and totally unsuspecting, was walking out. My boss was a nice enough person. I knew one day she'd forgive me for the empire I was about to create. From across the desk, I watched Meredith lean in to her lunch, a tuna sandwich from Mangia, one of the best places in the city for tuna.

This was the moment I'd lived for, relaxing with my little sister over perfect tuna before an afternoon's worth of hard work. I reached for my sandwich feeling proud not only of Meredith but of my evolving perspective on food. I ate when I was hungry, that was all. I kicked my legs back up on the desk and started writing a few overdue checks.

"I see your legs," Meredith said.

"Who doesn't?" I said.

"No, seriously," she said, and she was right. The twitches in my legs that Valerie, Meredith, and I had seen occasionally over the last few months were going wild. My thigh muscles moved like snakes under my black slacks. They undulated and piled up on one another. I agreed it was bizarre. Meredith put down her sandwich. She saw twitches in my arms, too.

"I don't like it," she said. It was scary when Meredith weighed in. My little sister always meant what she said.

"Maybe I should see a doctor," I said.

"Like now," Meredith said, but I wanted to work. After lunch Meredith and I talked about a movie treatment that Valerie had written. I still felt the twitches in my legs, but I didn't want to look down at them. I wanted to look anywhere else. I wanted to look at my Fiesta plates and start the day over. Don't look down. I wanted to look out of my window at the thousand Kelly green dots of people marching, gliding, walking, running, pushing, strolling, kissing through Central Park. Keep working. I wanted to look at Meredith like this forever, an amazing woman in the prime of her life. Just like me.

"Look down." My heart talks, I listen. The muscles of my legs and arms were rolling like the sea. As usual, my heart knew what my head would learn. Against the backdrop of my picture window, against the eagle's view of New York, my city, the impossible truth was announced: Something was seriously wrong with me.

The doctors invited me to a square dance. My first partner was my internist. I called him Undershorts. Undershorts was so tiny he could have fit under my exam gown. When I pulled up my gown to show him my twitches, he blushed and looked away. Then he climbed up onto a ladder and examined my ears, eyes, and throat. Undershorts didn't find anything wrong, so he swung me out to my second partner, Dr. Hainline, a sports neurologist at the Hospital for Joint Diseases. I bowed to my partner.

"Benign fasciculations," pronounced a busy Dr. Hainline, whose dance card was full. He said fasciculations was the clinical term for the muscle twitches I'd been experiencing. Apparently, my fasciculations had resulted from an unremarkable misfiring of nerve cells. I was fine. Good to go. That deserved a do-si-do.

That next week, I had trouble walking up the stairs when I was with my friend Nicole at the theater. "You didn't say anything about stairs," said Dr. Hainline, during my second visit to his office, and he danced to the left. "I'm going to run one test," he said, "but I know it'll come out negative." Negative was positive, I remembered from my days watching Medical Center.

What's a square dance without a good psychiatrist? After I booked my appointment for the test, I placed an emergency call to my shrink, Karen. She reminded me of Sally Field. I loved Karen, I really did. She had been one of my clear-thinking, commonsense beacons in the last couple of years, mentoring me item by item down the having-it-all checklist: weight loss (check), dating (check), landing a better-paying job (half-a-check). The Zoloft didn't hurt, either.

When I rolled up my sleeve to show her my arm muscles moving, Karen fidgeted, she crossed and uncrossed her legs -- she was all over the dance floor. My commonsense beacon was having a neurotic break with reality. Our repartee, which had always been verbal and jokey, filled up with more pauses than a Pinter play.

"Karen," I said.

"Jenifer," she said.

I placed my palms on the Abercrombie & Fitch jeans that she had helped me fit into. Karen was a medical doctor. I wondered, Didn't she want to mosey on over and examine me?

"The twitching is getting really bad," I said.

"The twitching...," she said.

"You remember...the twitching." Was this an echo chamber? "The neurologist thinks it's all in my head," I said.

"Do you think it's all in your head?" Karen asked. That was all I could stand. I swung my partner and let go, quite frankly. For all I know, Karen's still reeling down Central Park West.

On March 26, I went for my EMG, the one test that Dr. Hainline had said would show nothing. The EMG measures how well your nerves talk to your muscles. I wasn't sure what that had to do with me. The EMG room was small and filthy, with a big computer. My mother sat next to me in a folding chair. Valerie was next to me on the exam table, as a tall woman taped cold foil discs all over my body, turned to the computer keyboard, and tap-tap-tapped with her back to us for about ten minutes. The tall woman rose, wished me luck, and left the room. Then a very pregnant radiologist came in. She had a thick Russian accent. My ancestors were Russian, or at least I thought they were.

"Weren't our ancestors Russian?" I asked my mother, swinging my legs off the side of the table.

"Who knows? Who cares?" she said. My mother wasn't exactly the family historian. Our family didn't really have a historian.

The pregnant radiologist asked me to lie down for the second part of the test. She stuck long, sharp needles into different muscles in my arms, legs, and torso. It hurt a little. Each time she stuck me, the computer recorded data. After about fifty sticks, she rose. "Please wait," she said, pausing at the doorway and exiting stage right. People came and went so quickly here.

Minutes passed. Fifteen minutes. Valerie was losing her temper. She looked down the hall and saw a huddle of white coats. The huddle broke and a third doctor came in. With a Russian accent so thick you could cut it with a scythe -- radiology must have been all the rage in Moscow -- he introduced himself as the director of the department. He asked me if I had taken any prescription drugs lately. There was the Zoloft and an occasional Advil. He asked me if I used cocaine. I was always too scared to try it. The doctor scratched his five-o'clock shadow. He inserted two last needles, one into my neck and one into my tongue. That hurt a lot. I saw my mother grab Valerie's arm. The doctor wrote on a clipboard for a long time. Then he wheeled around in his chair to face us.

"Well, there is something," he said. It was the moment of truth in a made-for-TV movie. I went numb. As for the earth, it shifted 180 degrees. "I'd say it's fifty-fifty."

0 "What's fifty-fifty?" I asked.

The director shrugged and sent us downstairs to Dr. Hainline, who had prescribed the EMG, the one test that was going to come back negative. We sat for hours waiting for Hainline. For kicks, nothing beats a neurologist's waiting room, especially after a preliminary diagnosis of fifty-fifty. A middle-aged couple, the man's head wrapped in yellowed gauze, held each other and wept. A limping child hurtled scarily toward a pile of toys. A woman with an evangelist's stare looked only at the ceiling. A receptionist finally appeared.

"I must say I'm surprised by the results of your EMG," Dr. Hainline said. He buried his head in my manila file. "You seem to have some kind of motor neuron disease."

"What the hell is a motor neuron disease?" Valerie asked.

When I heard motor, I immediately thought of going somewhere, of getting up and running out, and never stopping. I thought of movement. The phrase itself -- motor neuron disease -- didn't conjure up anything specific. But I knew it was bad. Instinct ordered me to leave my body and supervise from above. My spirit hovered over the scene, trying to make sense of a new phrase -- and what I sensed was going to be a whole new life.

"Will I be able to walk?" I asked.

"We'll keep an eye on that," he said. Dr. Hainline spoke in tongues, ancient doctors' tongues.

"Is it a virus?" Valerie asked.

"No one knows for sure," he said.

"Will I be able to play tennis?" I asked.

"I've been at it for thirty years and I still can't play," he said, laughing and blushing. I pictured Valerie smashing a ball down Dr. Hainline's throat, but she and I pressed on responsibly with our twenty questions. So far, motor neuron disease hadn't qualified as animal, vegetable, or mineral. We looked for answers, even grains of answers.

"Will this situation clear up? Does it come and go?" Valerie asked.

"Need a more definitive diagnosis first," said the doctor.

"I've been working out a lot lately, maybe too much," I offered.

"Agreed!" declared my mother, jumping in bravely. "If I may...Dr. Hainline...what my daughter does to her body at that gym is dangerous, with the weights and the running and the going and the coming. It's too much for any one human -- too much."

"Hmmm," said Hainline, closing my file, blushing crimson.

"Can you give us anything to hang our hats on?" Valerie asked.

"I can give you a wonderful referral," said Dr. Hainline, heading for the door. "Up at Columbia," Hainline said. "He's a giant in the field." I pictured the Jolly Green Giant on a box of frozen baby peas. I ate a lot of those peas when I was a girl. I liked the butter sauce.

I had a motor neuron disease and a giant at Columbia University was going to tell me what that meant. Maybe he could take it away. I felt my arms and legs disappearing right then and there. I must have a fast-moving case, I thought. Dr. Hainline's receptionist handed me a card with the giant's phone number on it, and my mother, Valerie, and I left the hospital.

It was a black-and-blue night in New York. I was changed from before. I was a different woman hailing a taxi. My mother dropped us off at Valerie's house in Greenwich Village. Valerie, Scott, and their baby boy, Willis, lived in an ancient brownstone on Jones Street, a quiet street. Their house was my haven. After work, I loved hopping in a cab and going down to see them. Willis was my little blond duck. The house always smelled so good, like Valerie's chicken or her pasta cooking. There was always a place set for me. That night I wanted to stay and never leave.

We didn't do much crying or talking that night. Everyone just got busy. Scott set up my foldout cot in the living room. Valerie asked what we thought of spaghetti and a salad. Willis ran around in his diaper. Once, when he was eight months old, Willis and I pressed our foreheads together and laughed like no one had ever heard. We knew how to reach each other. That night, after Valerie and Scott had gone downstairs to bed, Willis and I started our sleepover. We were the night birds of the family. I opened a box of animal crackers, and we sat on the cot changing channels and laughing at everyone until midnight. We settled on a Hercules serial dubbed in Spanish, and Willis fell asleep in my arms. As I held him, I watched Hercules picking people up, throwing them down, and carrying them to safety. Maybe Spanish Hercules would save me. But in all likelihood, that job was going to be mine.

In April, after that horrible March madness, I finally had my appointment with the giant in the field, Dr. Lewis P. Rowland, the director of the Neurological Institute of New York at Columbia University. Dr. Rowland was a happier version of my grandfather George, a kind, handsome, incredibly successful Chevrolet dealer from the Bronx, who never smiled. Dr. Rowland was old-school all the way, right down to the threadbare Oriental in his book-lined office and his wardrobe of bow ties. In fact, Dr. Rowland had been around long enough to have actually attended the Old School.

On the day of my appointment, I asked Meredith and Valerie to "answer phones at my office," code for moving our fledgling movie studio to the next planning stages. When they found it impossible to concentrate, my sisters went to St. Patrick's Cathedral and prayed. I'd asked my mother and oldest sister, Alison, to take me to Dr. Rowland's office at the Neurological Institute. The institute was a huge brick fortress that looked like a prison. I got the feeling that you checked in to a place like the institute, but you didn't check out.

"What brings you here, Miss Estess?" asked Dr. Rowland as I approached his mahogany desk the size of a ship. Maybe I left my legs in the cab. I couldn't feel them.

"I have a motor neuron disease," I said. I was Dorothy facing the Wizard.

"You don't have motor neuron disease," Dr. Rowland boomed, my file from Dr. Hainline sitting closed on his desk. Dr. Rowland's friends called him Bud.

"Oh my God, I don't?" I said.

"No, no. You don't have motor neuron disease," he said again.

Oh, Bud. I swooned. The other doctors were such amateurs. Just like that, Dr. Rowland commuted my sentence. They didn't call this guy the giant for nothing. My mother wept for joy. Alison ran out to call Valerie and Meredith. I was going to be okay. That meant I'd live to dance at my mother's weddings.

Then Dr. Rowland opened my file from Dr. Hainline, for the first time, I guess. As he reviewed the file, his face screwed up into a ghastly seriousness. Bud, you've changed. "Step out, please," he said to my mother, ushering her out of the office in a hurry. So much for peas in butter sauce; color drained out of the world.

"I'm sorry, Miss Estess. You'll forgive me," he said gravely as he and I sat alone. "I hadn't seen the results of your EMG or your spinal tap," Dr. Rowland said. "I saw you...and I spoke out of turn. I've not done that before. Of course, I'll want to run my own tests."

Dr. Rowland gave me a neurological exam right there in his office. He followed my eyes with a flashlight. He hit my knees with a giant rubber hammer. He dragged a foot-long Q-Tip across the soles of my feet. For diagnosing motor neuron disease, the giant in the field used clown props.

"May I ask you to sit on the floor, Miss Estess, and then stand up?" Tumbling? All these weird tests, these Rube Goldberg variations, seemed so unscientific. But I was determined to win Bud over. If this was the extra-credit test, I felt sure I could ace it, charm him, and change his mind back again to you don't have motor neuron disease. After all, I could be very persuasive. I ran my fingers through my hair and settled onto Bud's Oriental like a lotus flower. I was great. I was graceful. I made good eye contact. Then I tried to stand up. I gave it my all -- I used my arms and legs, and the stomach muscles I'd worked on at the gym -- but I couldn't get off the floor. Dr. Rowland extended his hand, helped me up to a chair, and kneeled before me.

"You probably have ALS, Jenifer," he said, resting his hand on my knee. "Let's take a walk." Dr. Rowland and I walked arm in arm down an endless beige hallway. He told me that ALS was amyotrophic lateral sclerosis, a neuromuscular disease that destroys cells in the brain and spine called motor neurons. Without motor neurons, the brain can't tell the muscles what to do. Without directions from the brain, muscles can't function. Without muscles, a person can't walk, speak, swallow, breathe....It was all getting a little confusing.

"Will I be able to have children?" I asked.

"You can have them," he said. "I just don't know if you'll be able to keep up with them." I started crying.

"We will have no tears," Bud said. He put his arm around me. I think Dr. Rowland assumed that because I'd walked in to his office that afternoon young, confident, and self-possessed I was also healthy. Poor Bud.

The only thing I remember after the beige hallway was collapsing into Valerie's arms. She held me like a mother while I made sounds I didn't recognize. They were animal sounds, sounds from nature, unplanned sounds. This is what a dying woman sounds like. Then Meredith moved in close and we three huddled as one. Silently, Valerie, Meredith, and I renewed a sacred girlhood pact: Nothing, no one will stop us. Over the next months, I would come to reject conventional wisdom, the books and TV shows advising me to let go as I died. For my sisters and me, dying, as living, wasn't about letting go. Holding on to each other was what we knew. Holding on like this and reaching.

Dr. Rowland admitted to making a terrible mistake that day, one that I forgave. But as I soon learned, ALS was much less forgiving. The Yankee baseball legend Lou Gehrig died from it, and so did every single one of the hundreds of thousands of other people who got it. No one survived. There was no medicine for ALS, and nothing Dr. Rowland could give me would slow it down or stop it. I was thirty-five years old. My cells were dying. I was dying. Dr. Rowland didn't say that exactly -- he gave that job to his nurse and a bunch of pamphlets.

But for some weird reason, Dr. Rowland kept hanging around me after that first day. As I fought for my life, he taught me to buck up and be strong. He listened to me. He had my back. From that day on, Bud Rowland became the father I never had. I'm still trying to make him proud.

Copyright © 2004 by Jenifer Estess and Valerie Estess

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