Until I Say Good-Bye (9 page)

Christmas

December–January

Together

I
n November, after I returned from California and the Yukon, I sent an e-mail to my bosses at the
Palm Beach Post
. It read in part:

It's now been three months since I [took a medical leave] from the paper and the job I loved.

It was a privilege to go to work each day and grow democracy, to ferret out stories no one wanted told, to be trusted to inform and, yes, entertain our readers. When someone would ask me: “Who sent you?” I loved to reply: “Well, ma'am, that would be Thomas Jefferson.” I so wanted to evolve with the paper and work to keep it a central force in our community . . .

[But now] each day I get weaker. My speech is slurred and my hands so weak I cannot type with any speed . . . I am unable to scurry round, fire off web feeds, and talk without strangers wondering if I'm drunk. I tell you this so you know I am no longer the sturdy, speedy workhorse you need on the breaking news courts beat. Ergo, I resign my position. Four words I type while weeping.

The
Palm Beach Post
kindly offered me any writing assignments I wished, on a freelance basis. I told them I wanted to write personal stories. I wanted to write about learning to embrace life despite illness.

Writing was something I had planned to do all along, a part of living with purpose and joy. Then Mom got sick and life intervened. But with the job officially behind me, and Mom seemingly on the mend, I settled into the holiday season with free time and a plan. I would write about life with ALS. And I would make this Christmas a memorable one.

In years past, with no vacation days left, I often worked through the holidays. With our busy schedules, John and I at times decided it was too much trouble to get out the trove of decorations stashed high in our garage in large bins.

Rather, we'd buy a small tree and make popcorn garlands and construction paper chains with the kids.

This year, I went all out. For days, the kids and I worked slowly through the Christmas bins, opening hundreds of decorations, breaking out the entire Christmas village my aunt Beth had given us piece by piece over years.

We placed red-letter blocks on shelves spelling out words like R-E-J-O-I-C-E and P-E-A-C-E. We hung the children's Christmas crafts and hauled out every Santa, including the Santa toilet seat cover my zany cousin Mona had given us. Marina was such a help, taking over for my fumbling hands.

I don't believe in lots of gifts, but rather giving each child one nice thing. This year, I bought them each a laptop. Marina wrapped them, as well as all the presents for our relatives and friends.

As a gift to ourselves, John and I went to the bank with my life insurance money and paid off our mortgage. John had wanted to invest the money, but I insisted on leaving my family debt-free. I wanted to know that, no matter what, my children would never lose their home.

We returned from the bank to find that home in disarray. And the Christmas letter blocks rearranged by Marina to spell P-E-N-I-S.

Usually, the kids were pretty good at practical jokes. We still laugh about one April Fools' Day, when I hurried in from work in my usual way, hands full of files, probably on my phone yammering away with an editor.

“Have a chocolate!” Marina said, popping one in my mouth. I bit down. It was a chocolate-covered radish.

“Blech!” I said as I spit it out in the kitchen sink.

I flipped on the faucet to rinse my mouth. Marina and Aubrey had taped the sprayer handle in the on position. The spray shot directly in my face, soaking me.

“Hardy-har-har,” I said to the chuckling peanut gallery.

I went back to my bathroom. The kids tried to follow me, but I shut the door and sat down on the toilet seat. Which they had coated with nonstick cooking spray.

“Hee, hee, hee,” I heard from behind the door.

“Ya got me!” I said, laughing.

I kicked off my heels and put on my comfy pair of leather flip-flops. Which had been slathered inside with marshmallow creme.

Four gags in a row, one after the other.

“Someone's gettin' a whuppin',” I said to the giggle-fitters, which only made us all laugh harder.

This time, though, the Christmas creativity was not so perfect, and I'm not just talking about the P.E.N.I.S. blocks. John and I walked in the door high on our financial milestone to find a white powder mess in the living room. I mean, powder everywhere: carpet, furniture, walls, books.

Marina, fully into the Christmas season, had tried to decorate the tree with a mixture of flour and salt. She thought it would look like snow.

“I read it on the Internet!” she said in response to our stares. Pause. “It didn't work.”

John was irate, though he laughs about it now. He cursed as he hauled the tree outside to vacuum it.

A year before, I would've cursed too, because a full day of cleaning needed to be done. But serious illness changes you.

Or simply reveals who you are.

I laughed at the flour fiasco.

No bother. Holidays meant togetherness, with all its messes.

Mom was still in the hospital, so I brought a small tree for her room. Against Dad's wishes—he said hospitals don't want things stuck on the walls—Steph and I decorated Mom's space with hundreds of get-well and Christmas cards she had received. We gave Mom a tablet computer, hoping Dad could get her interested in a book to fill the never-ending hours in the hospital. It was a flop.

On Christmas morning, the
Palm Beach Post
published my first article on ALS. It was the story of my Yukon trip with Nancy, under the headline: “Among the Northern Lights: Two Life-Long Friends, One Adventure of a Lifetime.”

As Nancy's present, I had a copy of the article professionally mounted for her. She gave me a mounted wall hanging of a glorious green aurora. Right away, I hung it at the center of my living room wall.

The year before, John's coworker had given us a CD of Christmas songs. Despite the worsening condition of my left arm, John and I danced slowly around the house that year to the sounds of the season, loosening up for a merengue number, slowing to appreciate Andrea Bocelli's soaring version of “O Come All Ye Faithful.”

Then I fulfilled a long-standing wish to serve a Christmas goose, just like in Charles Dickens's
Christmas Carol
. John and I had spent all day preparing the sides and tangerine-rind basting sauce, then roasting the bird.

This year, I had no muscles for dancing, and no strength for slicing, dicing, or handling hot pans.

So on Christmas Eve, a former colleague from the
Post
, Jan Norris, brought a complete Christmas meal. Jan, I would learn in the coming months, had the heart of an angel and—bonus!—was the
Post
's former food editor.

She brought a feast, everything from a bacon-wrapped date appetizer to a traditional Christmas turkey to a full range of desserts. The goose had been one our tastiest holiday meals, but it's a distant second in my heart to the food Jan prepared for us, despite having her own family to care for on the most special eve of the year.

We ate it on a quiet Christmas afternoon, the kids busy with their new laptops, the torn wrapping paper thrown away. I think it was the first year Wesley enjoyed his gift more than the box and wrapping it had come in.

I do not send Christmas cards, as we have a host of friends who do not celebrate the holiday. Instead I send New Year's cards, celebrating the new beginning we all share. In 2010, our card's message spoke of strengthening our friendship and bodies.

This year, it was about acceptance. The card featured a portrait of our family, taken in the summer, with our dog Gracie sitting beside John, and Wesley holding his stuffed Piglet. It was a bucket-list item, a last family portrait before my cheeks shrank, my body withered, and I stopped looking like myself. Only my left hand, resting on John's shoulder, showed clear signs of ALS.

On the back, I put a quotation from
The Prophet
by Kahlil Gibran. It read:

Then the woman said, Speak to us of Joy and Sorrow. And he answered:

Your joy is your sorrow unmasked.

And the selfsame well from which your laughter rises was oftentimes filled with your tears.

And how else can it be?

The deeper sorrow carves into your being, the more joy you can contain.

Is not the cup that holds your wine the very cup that was burned in the potter's oven?

And is not the lute that soothes your spirit the very wood that was hollowed with knives?

When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.

It was an acknowledgment of my illness without mentioning it. A testament to the year I was trying to live.

“It's beautiful,” a friend said. “But I don't get it. What does it mean?”

“It means search your soul for strength,” I replied.

The Party

I
n early January, my colleagues at the
Post
threw me a going-away party. I had taken my medical leave in August without telling anyone what was wrong. I didn't even tell my colleagues I was leaving. I walked in on a Saturday, when almost no one was around, with the intention of clearing out my cubicle unnoticed.

Too painful. I left everything exactly where it was: my awards in the drawer, my brown sweater hanging on the back of my chair, my map of the cosmos and my children's artwork on my big cork display board.

Five months later, seeing my old colleagues hurt, but not as much.

We gathered at the house of reporter Jane Musgrave. I could not eat and talk at the same time, so I chose conversation. We talked about our years at the
Post
as old veterans talk about a war: hard days, but the best of our lives.

I was reminded of the time, about ten years before, when I was mugged at gunpoint. For two minutes, I stood face-to-face with three black teens. As a veteran crime journalist, I knew to study features and look for identifying marks. And yet, half an hour later, I realized I couldn't look at suspect mug shots and pick any of them out. Not with any confidence I wasn't fingering an innocent person.

That got me thinking. And thinking led to discovering that eyewitness misidentification is the leading cause of wrongful conviction. Almost 75 percent of prisoners exonerated by DNA had been wrongly identified by an eyewitness.

In 2006, I started writing about eyewitness identification. I wrote extensively of a case where a man received a forty-three-year prison sentence after being identified by a single witness as the shooter in a road rage incident. Vishnu Persad, though, was a different race than originally described and had an alibi: he was across town in a chemistry study group at the time of the shooting.

After five years in prison, his conviction was overturned.

I researched the story of a man arrested for second-degree murder in a bar fight, though he had clear evidence he was hunting in Georgia at the time of the drunken melee.

In another case, a man named Julio Gomez spent five months in jail awaiting trial for murder, even though he lived five counties away. He was the wrong Julio Gomez, and looked nothing like the real killer. Yet an eyewitness had picked him out of a lineup and signed under his picture: “This is the Julio who I witness involved in the murder.”

I wrote of three local criminal defense attorneys, all black, who had been misidentified at trial by witnesses. When asked to identify the criminal—the person in danger of being put in jail for a long time—three witnesses at different trials had pointed to the attorney, not his client.

One attorney had been misidentified that way in two separate trials.

My purpose was not to denigrate victims. I felt for them, many suffering years after the crimes. They weren't to blame. And neither were police and prosecutors, who acted in the interest of fairness and were rarely wrong.

But rarely isn't never, and the system had a blind spot. Even the best system in the world, as one of the misidentified attorneys told me, can get “lazy” in enacting change.

And Florida was one of the worst. A decade before, the Department of Justice had released national recommendations on decreasing misidentifications. Police in my county of Palm Beach, and many others in the state, had not adopted them, even though an eyewitness's memory is evidence and should be lifted as carefully as a fingerprint.

My research on eyewitness identification culminated with a front-page article published in January 2011—only weeks before I admitted to myself I had ALS. I had pored over the policies of thirty-two law enforcement agencies. Just three had in place best-practice procedures for creating fair photo lineups, advising eyewitnesses, and documenting identifications.

Within a month, on the recommendation of a statewide panel, the Palm Beach sheriff's office announced it was changing its policies for eyewitness identification. A year later, most of those policies had been written into state law.

“You did that,” my friend Nancy said recently. “You helped make the system better.”

I disagree. I didn't change the system. Dedicated law enforcement professionals did that. But by highlighting problems, I helped bring the discussion forward, and that made a difference. If not, what purpose does journalism serve?

At the party, my colleagues gave me framed copies of two of those articles. Jane Smith, another
Post
veteran, pointed out that the newspaper used to give Rolex watches to longtime employees on their retirement. No more.

So my colleagues had pitched in and bought me a gift: a 32-gig iPad, top of the line, engraved like those gold Rolexes had once been. It said: “To Susan Spencer-Wendel. From current and former
Post
ies.”

So much money was donated, they also gave me iTunes cards.

“I felt like George Bailey at the end of ‘It's a Wonderful Life,' ” Jane Smith wrote in her note, referring to the scene where people keep spontaneously giving Jimmy Stewart's character money. Jane received so many contributions, she finally told people to stop.

“You see, Susan,” she wrote, “you touched so many lives that we got a touch-screen iPad for you!”

For months, that iPad was my constant companion. In December, while working on the story of my Yukon trip with Nancy, I had lost the ability to use a standard computer keyboard. The keys were too far apart and difficult to press.

But I could hunt-and-peck on the iPad touchscreen. I could write again.

I could read books again, even though I could no longer hold the real ones. I was so excited, I downloaded the entire
Fifty Shades of Grey
trilogy in a minute, thinking I would lap up the bondage scenes. Instead, I soon tired of reading descriptions of juvenile orgasm over and over.

Ah well, sometimes the details disappoint. Smile.

But friendship rarely does.