Until I Say Good-Bye (4 page)

The Yukon

October

Auroras

I
f you were dying, what would you do? What would you see? Who would you spend your last year with?

I knew I wanted to travel. Travel had always been magic to me, the essence of life. So many happy times were defined by where I'd been.

Since my children were born, I had put off special trips, always thinking, I'm too busy now, but when the children are older, when the job slows down . . .

Now the excuses were gone. There would be no more waiting. The world was open to me, and I could go anywhere.

An-y-where.

But where? What had I never seen that had, even from a distance, filled me with awe? The Great Wall of China? The Taj Mahal of India?

Or the Atacama Desert of Chile? They say the Atacama is like being on the surface of the moon. Astronomers have found asteroid particles there that contain the same amino acids humans have. Oh! The mental magic the Atacama would be.

Or should I go on the most romantic getaway I could imagine: in Spain, at a monastery turned luxury hotel on a cliff overlooking the sea? A place to make love while still able, to experience those earnest, luscious tremblings on velvet.

It was my best friend, Nancy Maass Kinnally, who focused my attention. Ever since our trip to New Orleans, when I acknowledged my condition for the first time, she had been trying to plan something exotic for the two of us: the trip of a lifetime.

Nancy and I were born two weeks apart and raised three miles apart. We met as eleven-year-olds at Palm Beach Public Junior High School and have been best friends since. We went to college at the University of North Carolina together and to graduate school at the University of Florida.

Nancy was always Ms. Phi Beta Kappa. And I was Ms. I Tappa Kegga.

We balanced one another. We clicked largely because we laughed at the exact same things and could shut each other up when need be.

We shared a love of adventure and had traveled abroad, including Hungary and Peru. We visited Macchu Picchu on the summer solstice in 1997 and were surrounded by California New Agers. (It's, like, the sol-stice, man.) The Californians kept whining that the food was not organic.

So we escaped and climbed the opposite peak, Huayna Picchu, for peace and quiet and a view of the ancient home of Incan emperors.

I was five months pregnant. I slipped and nearly fell.

Yet we laughed the whole time, and haven't stopped laughing since.

Today—thirty-four years, five kids, and umpteen personal crises later—Nancy and I are still those silly seventh-graders, chuckling about boys and bodily functions, crackin' jokes.

It was going to be pretty hard to top the experiences we had already had together. But Nancy was adamant it was going to happen.

She contacted her brother, who offered his luxury apartment in Buenos Aires. A European city in South America, in a lavish pied-a-terre. A base to explore South America.

No, Buenos Aires was lovely, no doubt, but I had no connection there.

A friend in Goa, India, invited us to visit. Another friend from junior high school had moved to India and been ordained a Buddhist nun. Perhaps a visit to her monastery at the same time? And learn to meditate?

Nancy really wanted India.

“Seriously?” I said. “Can you see me in a Buddhist monastery? ‘I can't meditate now—it's cocktail hour!' ”

The inspiration came to me on an afternoon in late September. It was breezy, but still Florida: hot as blazes. Nancy and I were standing on a floating dock in West Palm Beach, awaiting friends in a boat.

I was already having trouble walking on terra firma. The slightly swaying dock was a reminder of my future, when even standing would be hard. I focused on the sky—balance, Susan, balance—and thought of auroras.

One of nature's most spectacular phenomena, seen near the poles of the earth, a sky light show often green and white, at times red, pink, purple, and blue.

The rainbow of the night sky.

I was transfixed the first time I read of auroras in Admiral Richard Byrd's book
Alone
, his account of the months he spent in Antarctic darkness, his neglected senses expanding to exquisite sensitivity.

Byrd wrote of a giant elliptical green aurora he witnessed:

Scintillating in the sky was what appeared to be a drapery hanging over the South Pole composed of brilliant light rays . . .

Overhead the aurora began to change shape and became a great lustrous serpent and the folds in the curtain over the pole began to undulate as if stirred by a celestial presence. Star after star disappeared as the serpentine folds covered them.

I was left with the tingling feeling that I had witnessed a scene denied to other mortal men.

I am a spiritual person. I believe in God. I believe in forces beyond us in the universe, wonders we are too small to comprehend.

In phenomena like the auroras, we glimpse these wonders. For a moment in their presence, we can sense, and feel, and see.

“The Yukon Territory? In winter?” Nancy gaped when I told her my wish. I had never spoken of this fascination before. And Nancy hates the cold.

“What happened to India? Why can't India be on your bucket list?” (She was half kidding. Maybe.)

“Of course,” she said, “I will do whatever you wish.”

Just then our friends Lisa and Anatole picked us up in their boat—a little teak-adorned one formerly owned by Jimmy Buffett.

We spent the day enjoying the best of Florida: sunning, swimming, joining a gaggle of other boats at a nearby island where people crank stereos, pop beer cans, and display their thongs and tattoos.

Lisa is a judge, weighing grave matters all week long. It was a delight to see her kick back and relax as we watched the skin pageant before us.

We were enjoying it so, in fact, that we failed to notice a massive thunderstorm until it was upon us. My friends scrambled to get our gear to shore, where we could wait out the storm. Unable to help, I sat on the boat near its metal canopy. I felt the electricity in the air, and thought how perfect it would be if lightning struck me.

I asked to remain on the boat.

Nancy and Lisa wouldn't hear of it. They helped me to shore. Together with a too-friendly man we had just met, we huddled on the beach, arms around one another, as cold rain beat down and lightning struck nearby.

I have no idea the odds of being struck by lightning.

Or the odds that I would be struck with ALS.

It doesn't matter. It can happen to anyone. Lightning strikes in the middle of paradise. ALS cuts down a famous baseball player, an older man, a son, a daughter, a mother in the prime of life.

I had accepted. I would move on.

To the Yukon Territory. To auroras.

Off the boat, and into the arms of my friends.

Thank You

T
here was one thing I needed to do before the Yukon. A heartbreaking thing: quit the journalism job I loved.

For more than a year, I had been struggling, improvising solutions for my failing health.

When I could no longer lift my laptop, I asked other people to get it out of my bag, place it on my lap, and open it for me.

When my precise keyboard choreography went kerflooey, and my pinkie finger would no longer reach the
p
—I began to hunt-and-peck.

And I began to miss deadlines. I shall rephrase to say, I began to miss more deadlines.

It unsettled me. I banged out updates as best I could with about six working fingers, even tweeting from the courtroom. The
Palm Beach Post
was counting on me. We were in a recession, especially in the newspaper biz, and I was taking up a slot that could have gone to someone with two hands.

I began to lie awake at night, worried I wasn't pulling my weight. That I wasn't a top-notch reporter any more. Slowly, I began to dread going to the job I adored.

But how could I quit? Being a journalist was my identity. To lose it would be to lose a piece of myself.

And what about money? I had big plans, but I wasn't sure I could afford them. In fact, I wasn't sure we could pay our monthly expenses without my job.

Nancy, as always, stepped in. I want you to understand this, because it's important. Every day, when I need something, John is there. Every moment I despair, the thought of my children comforts me. And at every turning point in my life, when someone has stepped forward, it has been Nancy.

Nancy worked in communications for the Florida Bar Foundation in Orlando. After my diagnosis with ALS, she figured there must be legal provisions to help a sick person like me, and she suggested a few local lawyers who could look into the matter.

The Legal Aid lawyers, John and Stephanie, explained to me the Americans with Disabilities Act. They told me about medical leave of absence.

John went through all my paperwork, all that HR stuff from the office you stick in a drawer and never look at twice, and found something: I had a life insurance policy through the
Post
. A pretty big one. If I was terminally ill—yes to that one, unfortunately—I could take 70 percent of my benefits early. Not just early, but immediately. Yukon, here I come!

The process took almost three months—all through the summer, as I watched the space shuttle with Wesley and embraced my future and planned our birthday trip to the zoo. The whole time, I said next to nothing to my colleagues. I just kept working.

I worked harder than ever, in fact, determined to do the job the same way I always had.

And for a while I did. I worked so effectively, and with such joy, I began to wonder: Maybe I can continue?

Then I fell down the stairs.

I had been pushing myself, refusing to give in to weakness. But I pushed too far and, on the stairs outside the public prosecutors' offices, my leg gave out.

I crashed down. Didn't have the arm strength to stop my fall and tumbled to the bottom.

By the time I was helped to my feet, there was blood running down my left leg. “You need a doctor,” someone said.

“No,” I replied. “I'm late for an interview.”

The interview was with the top prosecutor. He was no fan of my reporting. When I walked in, he gave me the usual cold look. That I'll-talk-to-you-cuz-I-gotta-but-I'm-not-going-to-like-it stare.

Then he saw my leg.

“Are you hurt? You're hurt. Let's do this later.”

I realized right then: there was no doing something later. I would never again be stronger than I was today.

“No,” I said, “Let's do it now.”

Not long after, my editor phoned me. “What the hell is wrong with you?” she said.

“Call my lawyer,” I told her.

I didn't mean to be rude. The words had come to my mind—
I have ALS
—but I couldn't say them. Not without breaking down in tears, and that was something I couldn't do.

A few days later, I was on a cigarette break with Judge Barry Cohen, a man I had written about for years. We often lunched together in the courthouse cafeteria, along with other judges and attorneys I admired.

I don't know why I said it. I didn't plan it at all. Suddenly, I turned to him and said, “I don't think I'm coming back.”

Then I turned and walked away, as fast as I could with my dignity intact.

That time, I did cry. Because I loved that job, and I had just admitted to myself that it was gone.

I
took a medical leave of absence in mid-August. Two weeks later, I won an award from the Florida Bar for my tweeting and web updates. It was statewide recognition, one of the highest accomplishments for a court journalist like me.

The award was given at a major dinner, attended by journalists, attorneys, and members of the Florida Supreme Court. My boss at the
Palm Beach Post
, Nick Moschella, wanted me to go. He thought it would be good for the newspaper, and for me.

But the event was in Tallahassee, the state capital, five hundred miles away on the other end of the state. No way could I drive in my condition, and the trip was last-minute because nobody had been checking my work mailbox. The plane ticket cost $700.

I couldn't justify the expense; not when I knew I wasn't coming back.

“Please use the money to send a reporter on assignment,” I told Nick. “I'll pay my own way to Tallahassee.”

I decided to take the bus.

I had ridden buses often in other countries. But I had never been on a Greyhound bus in America. Go for it, Susan, I told myself. Have an adventure.

The trip was long, boring, and miserable. I think it took eight hours. For half of that time, I sat across from a heavy metal band. They spent their time complaining to their manager, loudly, on a cell phone, about having to take the stinking bus.

They meant the stinking part literally.

At one stop, I fell over backward as I struggled on the bus's stairs. “Man, she is wasted,” I heard the heavy metal dudes say.

I arrived on the day of the awards presentation. Bedraggled. Besotted. The bus! In my condition. What was I thinking?

Nancy let me crash in her hotel room. A bath, a nap, and a friend: that picked up my spirits. That afternoon, amid cries of “Let's go for it,” we Googled our way into a Yukon vacation and booked the tickets.

Aurora borealis, here we come!

That evening, I glammed up in a nice dress. Put on my makeup and favorite necklace, made from a medal of Saint Andreas. And, unfortunately, my flats. Just before taking medical leave from work, I had fallen coming out of my house and broken my clavicle. That was when I realized my legs were too weak for high heels.

The ceremony was on the top floor of the capitol building, in a room with window walls and a 360-degree view. At sunset, my favorite time of day. All the big wheels in my business were there, including a few justices on the State Supreme Court.

The moment didn't strike me, though, until a friend, Neil Skene, told the story of my last year, right up to and including the bus trip. As I walked up to get my award, the applause started. When I turned to face the crowd, I realized they were all standing.

I knew it wasn't for my tweets. It was for twenty years.

It moved me.

I can't remember my acceptance speech, but I think it was this: “Thank you.”

The next morning, I took the bus back home. A month later, I was on my way to the Yukon with Nancy.