“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
In 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 Posties.”
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.
A Gift to Myself
After the party, with kids back in school and John back at work, I gave myself another gift. One based more on want than necessity: permanent makeup.
I love fashion, always have and always will. I was no beauty queen, but I always prided myself on being well put together. Perhaps a form-fitting black dress—not too tight or too short for work. And black heels, four inches, closed toe, a thick heel to signal “not stripper shoes.”
Ah, heels, love them. Wore them every day of my adult life, even nine months pregnant. With bunions. Then my legs became too weak. Out went the high heels.
No way was I letting that happen with makeup.
Makeup was my friend. It opened my beady eyes, created cheekbones where none existed, transformed my gullet gateway into kissable lips.
Makeup is precise, an art of millimeters. Fine lines erased around eyes, shadows—sometimes three shades—applied just so on eyelids and under brows, with a dot of sparkly white on the brow bone to open the eyes and make a twinkle.
Like so many women, I had spent scads of money finding the just-so combo for my face. Found a lip color I loved—Raisin Rage—a shade of plum that looked natural and nice. Wore it every day.
Lined my beady eyes to open them up, careful not to draw the line too close to the center, which makes the eyes look closer together.
Brushed multiple coats of mascara on my lashes. I owned three different colors—Very Black, Black, and Brownish Black—plus their waterproof versions.
Even as my hands weakened, I applied makeup. When my fingers curled, I twisted open bottles with my teeth. My magic tubes had chew marks on their sides.
Finally, I gave up closing things—too hard to reopen. I drove around with an open tube of Raisin Rage poised for application, propped in the center console of my car. That worked until the heat came. Then I had a molten plum mess.
My hand began to shake so much I could no longer line my eyes. The mascara wand quivered, so I ended up with more Brownish Black on my eyelid than on my eyelashes.
Failure was not an option. Me without makeup was NOT an option.
Vanity, thy name is Susan.
And I am claiming you. Caring about how you look is not shallow. Pride is the engine of self-respect. Nothing important ever was accomplished by letting the little things slip.
Besides, without makeup, I looked like I had not slept in a decade.
And John putting it on me? Never even entered the realm of possibility.
So I gave myself a late Christmas present: permanent makeup. A euphemism for: tattoo your face. Yes, that is how vain I am. I didn’t think twice about needling ink into my eye sockets and lips.
I Googled away. A site advertising “wake up with makeup” caught my beady eye. The artist, Lisa, was a certified micropigmentation specialist. Yes, it’s real. Lisa worked in a plastic surgeon’s office, where they might tattoo an areola on a new breast after a mastectomy or eyebrows on an accident victim’s face.
And she had worked on disabled people like me.
I called. Lisa said something right away that gave me confidence: “I refuse to tattoo anything unusual or that will look bad.” Women often asked her to tattoo mole beauty marks on their faces. She declines, she said, because they fade and look blotchy.
Lisa offered tattooing of the eyebrows, eyes, and lips. I signed up for all three.
“Oh, gosh, honey, are you sure?” Steph, also a makeup maven, said. “It’s permanent. And painful.”
“And my only option,” I said.
Pain was not an issue for me. I have a high tolerance for pain. Pregnant in high heels, that was me. I have subjected myself to the most painful body maintenance women can elect to do: the Brazilian bikini wax. After that hair-ripping horror show, pain was not a problem.
“Well, I am definitely going with you,” Steph said. “To make sure her tools are clean and she doesn’t turn you into a clown.”
It takes hours to tattoo a face. Brows, for example, are drawn one hair at a time, underneath a high-power magnifying glass. Lips take hundreds of pinpricks, each injecting a dot of color under the skin.
But oh, what color? That was the hardest part.
Lisa had custom-ordered a color she thought would work on my lips. She put some on me. It looked like orange Vaseline.
“You won’t see that much orange,” Lisa said. Permanent ink, she assured me, looks vastly different under the skin.
“No way,” I said. “No orange!”
She tried a red. Now, I love red, but only at night.
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br /> I asked her to re-create Raisin Rage. She mixed up a plum, which I liked. We selected browns for the eyeliner and brows.
Lisa plucked my brows, then drew on the shape I wanted to add.
Heaven! I thought happily. I’ll finally have arches! All my life, I had had skewer-straight brows.
Lisa numbed the area with a cream. She turned on the needle tool.
Zzzz . . . zzzz . . . zzzz, it sounded each time it injected color.
I held my breath for the first ten minutes. Steph watched each stroke. The brown brow color looked purple. Steph asked if that was normal.
“Yes,” Lisa said. “Don’t worry.”
She zzz, zzz, zzzed for an hour on each brow.
She held a mirror up for me to see. My brows looked swollen and bloody, but otherwise fine.
Next came the eyes, open as she zzzed a line flush with my lashes.
“I’d need a sedative for that,” Steph said.
I could not flinch. I could not move a hair with the needle so near my eye. I lay still as stone, a deep calm coming over me.
Get your Zen on, Susan.
We decided to add a wee flourish on the outside corners, like an extra-thick lash at the end. A makeup trick that makes eyes look larger and more open.
Lips were last. Lisa warned they would be the most painful and slathered numbing cream all over.
I wanted the entire lip colored, not just lined. Lipstick that has worn away, revealing just lipliner, has always looked ridiculous to me.
Lisa started zzz-zzz-zzzing. I flinched. Lips are sensitive. Why else is a kiss so enchanting?
The wee dip in the center of the top lip is called a Cupid’s bow. It felt like Cupid’s bow was stabbing me as Lisa worked. I wanted to jump out of my sensitive skin.
I took a deep breath and thought of the most perfect kiss I ever had: a first kiss of intense ardor, yet not too hard, on lips just the right size, touching every millimeter of mine, the soft point of his tongue tracing the outline of my mouth.
I thought and thought of that kiss, that night so many years ago.
Until I Say Good-Bye Page 9