Until I Say Good-Bye (2 page)

I thought of the love I had known in my life. That most perfect, selfless kind felt nursing my child in the moonlight. That thrilling, romantic kind where all you want to do in the moonlight is please the other.

I am lucky, I thought. I have known remarkable love.

I am content no matter what happens tomorrow.

Nancy texted me: “Hear you're going to Miami. Thinking of you.”

“Didn't wanna worry you,” I replied.

I struggled to open the door to the apartment balcony. I sat outside and smoked, a habit that had become a comfort to me.

I practiced, among other things, being alone. Not a comfortable state for me. We are born alone and die alone, but all my favorite moments of life had been spent with someone else.

I thought of the victims and families I had seen in my ten years as a court journalist. I thought of how many had persevered through tragedy—and how others never recovered.

I psyched myself for my tragedy tomorrow.

I thought: When someone tells you that you have ALS, you have to steel yourself right away. No crying. No breaking down. You have to make a strong start.

I had learned this in competitive swimming, the coach drilling us on strong starts. Head tucked, ready to explode off the block.

Steady wins the race, right? That's what they always say. Steady wins.

Finally, I had enough of thinking. I picked the most jarring movie on the shelf:
Blow
. Cocaine! Violence! Distraction! Perfect! I took a sleeping pill and went to bed fully clothed.

In the morning, I took a cab to an unremarkable building in downtown Miami. People walked about in scrubs and stethoscopes, heads bent over their iPhones. I wondered which was the doctor who would change my life.

John arrived. Late, as always.

He'll be late to my funeral, I thought. That made me smile. Never change, John. Please never change.

In the office, a kind representative of MDA (the Muscular Dystrophy Association) circulated, greeting patients like old friends. A nurse took my vitals. My blood pressure was lower than normal—90 over 60. I breathed, slowly and deeply.

The nurse took us to an examining room.

Dr. Ashok Verma entered, a tall, distinguished Indian man with that disarming Anglo-Indian accent I like so much. Dr. Verma is the head of the University of Miami's ALS clinic.

He looked over my records.

He asked a few questions, did some strength testing, sat back at his desk, and chirped: “I believe you have ALS.”

He sounded like he was inviting me to a birthday party. And he was smiling. I don't know if it was a caring smile or a nervous smile, but I will always remember that smile.

Now, I had planned how I would react when I heard those words. I had steeled myself. Strong. A burst off the starting block. An explosion of energy propelling me into the race.

I dropped my head for the start . . . and began to cry.

I could not stop, any more than I could stop my breathing or my heartbeat. I cried and cried.

Dr. Verma kept chirping about his ALS clinic, about how he wanted me to come there. “We have to stop pretending it's something else.”

John was clearly annoyed. “Just hold on,” he said. “Let's give her a minute.”

I remember snot. Snot filling my nostrils, oozing out of them. I remember thinking how cruel a journalist colleague was when he had ridiculed a man testifying, weeping and dripping snot as he lamented killing six in a car accident.

So odd, eh? What the mind remembers when.

Dr. Verma held out a box of Kleenex. John wiped my face. I composed myself enough to talk, and pulled out my trump card.

Stem cells—my own personal stash.

Around the world, researchers were studying stem cells, trying to cure degenerative disease. I recalled the story of a local police officer with ALS whose buddies held fund-raisers to send him abroad for stem cell treatment.

And I had my own private stash, straight from the font of life. When my sons were born, I banked their umbilical cord blood, a treasure chest of cells to be used to fight future disease.

“Perhaps,” I said, “there's a researcher who could use those stem cells on me?”

“The problem,” Dr. Verma began slowly, “is that the researchers don't know how to get the stem cells to go to the right place.”

He said he'd had forty-five ALS patients go abroad for stem cell treatment. None were cured or had their lives extended. All were left poorer. “In their pockets,” Dr. Verma said, patting his.

I had long decided, come what may, I would not bankrupt my family chasing a cure. I would not clamor to be part of a clinic trial, only to receive a placebo. I would not doctor-hunt or go Google crazy, searching for someone to give me false hope.

That's that, I thought, as John wiped my nose once again.

We walked out in silence.

Drove in silence.

“I'm hungry,” John said, confirming what I already well knew—the man can eat at any time.

We went to Burger King. I sat outside on a parking barrier, smoking a cigarette, while John went inside for food.

Now, I had watched Lou Gehrig's farewell speech of 1939 a number of times. The one where he declared himself the luckiest man on the face of the earth, even after “catching a bad break.” Even after being diagnosed with a disease that would rob him of his talent, and then his life.

I had wondered if that was true. Did he really feel that way? Or was it a grand thought that only came to Gehrig surrounded by tens of thousands of applauding fans?

And then it came to me too, alone, seated on a parking barrier outside Burger King. No, not a muzzy moment, but my life in focus, tack sharp.

Forty-four years of perfect health. I had rarely even had a head cold or tooth cavity.

Forty-four years, and the sickest I had ever been was after I ate a bad chicken sandwich in South America.

I had three easy pregnancies, each producing a rosy, pudgy babe. Three breezy C-sections where I was walking the next day.

I had known abiding love; traveled the world; married a great partner; worked a job I adored.

I knew where I came from. Adopted as an infant by dutiful parents, I had met my birth mother at age forty and the family of my birth father soon after. I knew my ALS was not inherited from them. I knew my rosy, pudgy babes need not fear my fate.

I was alive. I had a year. Maybe more, but I knew I had one more year at least of good health.

I determined, right there in the Burger King parking lot, to spend it wisely.

To take the trips I'd longed to take and experience each pleasure I'd longed for as well.

To organize what I was leaving behind.

To plant a garden of memories for my family to bloom in their futures.

Lou Gehrig was an athlete. ALS took his talent immediately.

But I was a writer. ALS could curl my fingers and weaken my body, but it could not take my talent.

I had time to express myself. To build a place of my own with comfy chairs, where I could think and write and sit with friends. Where I could wander through my own garden of memories and write them down.

A wandering that became, beyond my every fantasy, this book.

A book not about illness and despair, but a record of my final wonderful year.

A gift to my children so they would understand who I was and learn the way to live after tragedy:

With joy.

And without fear.

If Lou Gehrig could feel lucky, then so could I.

So should I.

I tucked my head once again in the starting block, steeling myself for the race.

“I'm glad that's over,” I told John when he returned with a coffee for me, a Whopper for himself. “And I still feel incredibly lucky.”

The Clinic

T
he clinic.

Ah, how I love that word.

Conjures notions of a kind nurse and a bed and a Popsicle and a chance to go home from school and sit and watch soap operas with Mom.

Dr. Verma's clinic, though, was the University of Miami's multidisciplinary comprehensive ALS clinic, located at St. Catherine's Rehabilitation Hospital in North Miami Beach. The name should have been my first clue.

John and I arrived about 1:00 p.m. Three hours after my appointment with Dr. Verma. Two hours after my diagnosis with ALS. An hour after I'd vowed to live with joy, while John wolfed down a Whopper.

The clinic was essentially a doctor's office. There was a waiting area with an admittance desk, doors, and those doctor mags. The patients looked normal. An older man and his wife. An older woman and her very, very pregnant daughter. We chatted about her coming child.

She asked if we had children.

For the first time that day, I saw John tear up.

Then the doors opened, and the medical staff streamed in to “begin clinic.” Everyone seemed to be scurrying, including the woman at the center of it all, Ginna, a doctor of nursing. Dr. Nurse, I soon divined, was in charge of air traffic control.

She ushered us to an examining room. In walked the physical therapist, a petite woman in sensible shoes with a harness-looking thingy around her waist, as if she were going rappelling off a cliff.

Cheerfully, the therapist rattled off questions. “When were you diagnosed?”

“Today.”

“Oh.”

She did some strength testing. “Good,” she said. “How do you feel?”

“Fine.”

“You'll need physical therapy to keep you strong. When did the symptoms start?”

“Two years ago.”

“That's wonderful! See you next time!”

Next came the respiratory therapist, who had me blow.

“Very good!” she proclaimed. “You're breathing well! We will monitor you for problems as your tongue and throat muscles weaken.”

A half hour—
bing!
—and she was gone, just like the physical therapist before her. John and I looked at each other. We were in shock, reacting without understanding.

And then,
bing
, right on schedule, in came the speech pathologist.

Oh, I get it, I thought. It's speed dating. Dr. Nurse was the proctor, keeping the clinicians rotating on a fixed schedule.

Jeez, I wondered, how many people have this disease?

“I've had enough,” I said. “I'm leaving.”

“But you have more appointments!” Dr. Nurse protested.

“Not today.”

She told me of a patient who had ALS for thirty years and still golfed at seventy. “Slow as your disease has progressed, you could end up like that,” she said. “Maybe. We just don't know.”

Maybe I have years. Maybe. But not because I attended this clinic. This was a cattle call, not treatment.
There is no cure for ALS!
my brain screamed. They were measuring my slide to death.

“See you next time,” Dr. Nurse said, with a friendly smile.

I don't think so, I thought, as John escorted me out the door.

I would eventually find my own psychologist and physical therapist. But I would not be attending Dr. Verma's clinic.

I had been an official ALS patient for less than a day, and I already knew how I did not want to approach my disease.

The Wonder

S
o what do you do when you don't want to study yourself?

You look outward. Or more precisely, for me, you look up.

I have always been a lover of the heavens. To me, they are far more than a permanent ceiling. I look to the sky each day for glory—in a lavender sunset or brilliant moonrise, a comet whizzing by for an eve, in clouds which look like they belong on a gospel album cover.

In 2005, after Hurricane Wilma, south Florida had no power for days. In the
Palm Beach Post
newsroom, reporters were being dispatched to cover fuel shortages, the president's visit, hospitals running on generators.

I asked to write about the stars, which had lit up as cities fell to black. I was delighted when the editors agreed it was important to show readers a silver lining.

I wrote a story headlined, “Power of Universe: A Nightly Light Show,” which began:

Light a candle rather than curse the darkness.

No. Leave the candle. Go out, look up, marvel in the darkness.

STARS!

I have a picture book of images taken by the Hubble Telescope. Images of infinity, beyond our dome of sky. Of things millions of light years away.

I remember clearly the images, but not what the images are, largely because it's incomprehensible to me.

Incomprehensible that the universe is so vast that all of Earth is a dot. A period at the end of a sentence, in a book a million pages long.

Whoa.

Whoa!

We almost didn't have those pictures. When the Hubble was launched into space, the first images beamed back to Earth were blurry. (Talk about an “ah shit” moment!)

The Hubble's lens had been ground incorrectly. By how much?

Two microns. One-fiftieth of the thickness of a piece of paper.

NASA dispatched an astronaut named Story (how lovely) to spacewalk out and fix it.

Later, another astronaut had to remove thirty-two tiny screws to replace a battery pack. While wearing what amounted to oven mitts. Even a slight nick in the spacesuit could kill him. He spoke of ignoring the earth below and the black vacuum in which he floated. He focused instead on one screw at a time.

One task.

One day.

What NASA does is awe-inspiring to me. I mean true jaw-dropping awe, and very few things in life move me like that.

How serendipitous, then, that July 8, 2011, less than three weeks after my diagnosis, was one of NASA's most storied events: the final space shuttle launch.

Most all my life I had lived in south Florida, a mere three-hour drive from the launch site in Cape Canaveral. At launch time, I had always dropped everything and dashed outside or to the window in my office in West Palm Beach, hoping to see the vessel—small as a star from that distance—blaze up the northern sky.

Yet I had never seen it up close.

Go, a voice inside my head told me. Don't feel sorry for yourself. Don't dwell on the muscle mass in your lower left arm. Fulfill a personal dream, by Jove, and see the shuttle
Atlantis
lift off.

I threw myself into the experience, reading everything I could find on the launch—the farewells, the reminiscences, the discoveries in its thirty years of flying, and the economic hardships caused by the end.

I read that a NASA executive hung a Dr. Seuss quote in his office to keep things in perspective: “Don't cry because it's over. Smile because it happened.”

I will always remember that line.

The launch was not a sure thing. It had already been scrubbed once. As an astrophysicist on Space.com explained, the weather at four different sites around the world had to be “cross-correlated with myriad other factors, and extruded through a complex web of contingency requirements, boundary conditions, and constraints.”

The weather forecast for July 8 was poor. Odds of a launch only 30 percent.

I set out anyway, for that is the way to experience: to go. With me was my seven-year-old son Wesley. My other children, Aubrey and Marina, were visiting John's parents in Pennsylvania.

Wesley and I drove the evening before to my friend Nancy's house in Orlando. Then, expecting full gridlock, we rose with Nancy and her children before dawn. We drove in a two-car caravan to the top of a parking garage in Cocoa Beach and found a bird's-eye view of the shuttle, if it launched, and the endless sky overhead.

We turned on NPR to listen to the play-by-play. It was cloudy, and a launch was far from guaranteed. We waited. Chatted. Enjoyed the uncertainty.

The poet Rainer Maria Rilke wrote: “Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.”

I thought of my new uncertainty: How long can I live with ALS?

I thought: “Don't search for answers. Live the question.”

Enjoy life more because of the uncertainty, not less.

Our parking lot was packed. We milled round and met people from all over the United States, some on bucket-list trips. Someone turned on music. A man came around selling cans of beer.

We went to the nearby surf shop to show the kids the huge saltwater tank with a shark inside. A friend of Nancy's had joined us with her two children. In the chaos of five kids, Wesley wandered off. It took us a few minutes to locate him—playing on the escalator. Completely enthralled by a moving staircase.

By midmorning,
Atlantis
was fueled and ready to go. We climbed atop my minivan, standing on its roof. Wesley was amazed. We were on top of the van!

“You'll dent the metal,” someone yelled up to me.

“Who cares? It's history!” I replied.

We waited, listening to tributes and retrospectives. Will it launch? Won't it? The uncertainty was the joy.

The countdown began. T minus one minute.

The countdown stopped at thirty-one seconds to liftoff.

A few minutes later, without warning, the shuttle appeared in the clouds.

“I see it! I see it!” I yelled.

We stood on the dented roof and cheered.

We could not feel the shuttle rumble the ground. We could not see the orange explosion that launched it into space.

But we felt its wonder.

And smiled, though it was over.

Smiled because it happened.

Afterward we walked beside the ocean, abuzz with wonder, letting the traffic clear out. It didn't work. Even in the evening, the roads were packed. I drove at five miles an hour, thinking about the shuttle. Of NASA's central message, the one a part of its very existence: Reach out. Explore. Dream big. Go.

Go now.

The big questions rose before me: Where do I want to go? How do I want to live? What is the central message of my life?

The small questions too: Where are my photographs? What will I eat when my tongue fails? And what about this maxed-out bladder?

Ugh. I had to pee.

There was no chance to pull over in the traffic jam. Besides, with my weak arms and fingers, public restrooms weren't as easy as they used to be.

You have the bladder of a camel, I thought. You'll make it back to Nancy's.

I did. I held my bladder for three hours, all the way to Nancy's house.

She wasn't there. Wesley and I had left her car behind us on the road somewhere.

I tried the doors. Locked.

I looked around, thought about waiting . . . then shrugged.

Half an hour later, when Nancy and her family arrived, Wesley and I were bobbing in the pool, fully dressed, huge smiles on our faces.