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.
Wesley
After that trip, it would take me a while to retrain Wesley that we don’t usually swim in clothes. Not near as long, though, as it took us to get him to wear a swimsuit in the first place.
Which I suppose I should explain.
Wesley was my third child. I was thirty-six when I had him, and I knew he was my last. Yet when the doctor offered to tie my tubes during the C-section delivery, I declined, not wanting that period of my life to be over.
I appreciated his infancy, even the sleepless nights, as only an experienced mother can. Wesley was clingy, which I loved. If he fell asleep on my breast, I’d stare at him for an hour. Remember this! I told myself over and over.
He didn’t crawl much, unlike Marina and Aubrey, but he started talking early. By the time he turned one, Wesley was saying whole sentences, like “Let’s go see the hippopotamus today.”
“He’s a genius!” John said.
As we realized later, he was imitating sounds. He had no idea what he was saying, or even that he was using words.
His behavioral issues started at three. He slammed doors over and over. Flipped light switches on and off compulsively. Ignored everything John and I said. I used to bang a pot behind his head to see if he could hear, he was so oblivious to our voices. He always jumped.
The situation reached a head that Christmas, when we took the kids to a fancy mall to see Santa. There were Christmas lights, Christmas trees, giant snowflakes glittering on strings, hundreds of kids and shoppers, at least two competing sets of Christmas carols . . . and Wesley fritzed out.
We were waiting in the long, lon
g Santa line, and he could not stand still or stop screaming. John and I walked him around and took him into stores. No good. Wesley tried to climb into the fountain.
We gave up and dragged the kids to our minivan, all three now complaining. I was a smoker, but I only smoked a few cigarettes a day and rarely in front of the children. After an hour of Wesley’s behavior, though, I was at my wits’ end.
“Mom, what are you doing?” yelled eight-year-old Marina when she looked out of the van and saw me smoking.
“Mom!! You can’t litter!” Marina hollered.
I picked up the butt and threw it on the van floor. Wesley was screaming and struggling so much, I sat on the floor at his feet to comfort him.
We were halfway to the next, more subdued mall when we smelled smoke. The cigarette butt was smoldering on the carpet of John’s company car.
We screeched into the Palm Beach Mall: me beating out the smoking carpet; John furious and cursing; Marina whining and snapping at a forlorn Aubrey, “There’s no Santa, stupid”; Wesley berserk.
We trundled the kids across the semi-deserted mall to Santa’s “Wonderland.” No line, but Santa was going on break. The elf tried to stop us, but Santa looked over at our family and said, “No, no. I’ll take this one.”
John and I pushed Aubrey up with one hand, trying to control Wesley with our others. Aubrey was five, a little shy, with a lisp. He stopped short, turned to John with a confused look, and said, “Daddy, why is Santa bwown?”
That bwown Santa smiled. He had more Christmas spirit than all of us put together.
After the holidays (a series of disasters), I insisted on taking Wesley for an evaluation. I remember the psychologist saying, “He looks at you. That’s good,” and me thinking, Oh shit!
The psychologist called us back to her office a week later. There was one soft light and a box of Kleenex by the sofa. “I believe Wesley has Asperger’s,” she said.
Again, I was clueless. “What’s Asperger’s?”
“It’s a form of autism.”
I reached for the Kleenex, already crying. That was and shall remain the worst day of my life. I still can’t drive past the building where Wesley was diagnosed.
Two years later, Wesley had made tremendous progress. It took a lot of paperwork and planning, a lot of long nights and phone calls, but I had fast-tracked Wesley into the local pre-K program for children with special needs at Meadow Park Elementary. The staff worked miracles, tamping down Wesley’s odd behaviors, focusing him to learn.
He entered the regular kindergarten there in 2009. The orientation was held in the library, about a month after I noticed my withered hand—and a week after I first heard those three letters: ALS.
As the teachers talked, most of the kids colored quietly beside their parents. One child even appeared to be taking notes. Wesley scampered around the library, pulling books off the shelves and egging on another little boy to chase him.
My leg muscle started quivering. My ankle was propped on my knee, and I saw my calf twitch, a primary symptom of ALS. New York Times writer Dudley Clendinen, who died of ALS, described these twitches in the most beautiful way, “like butterflies fluttering underneath the skin.”
I clenched the muscles to stop the shaking. But when I unclenched, the butterflies returned.
“Mom,” Wesley called in his loudest voice. He always used his loudest voice. “Mom! Mom!”
I smiled. Sure, Wesley was pulling books off shelves at kindergarten orientation. But he was also asking another child to play. Yes, in the wrong setting, at the wrong time, and way too loud, but Wesley was asking. I felt so happy for Wesley in that moment, so optimistic, that nothing in the world could bring me down, including a twitchy calf.
“It’s Google twitches,” John said that night. “You read about ALS symptoms on the Internet, and now you are experiencing them.”
It’s going to be all right, I told myself. Wesley is going to be all right.
Animals and Expectations
In August 2010, we adopted a dog. In many ways, it was a responsibility I didn’t need. My muscle problems were spreading, and I was still working full-time while raising three energetic kids.
But Marina and Aubrey kvetched constantly about not having a dog. Not having a dog and not having cable, in that order. The horror!
“It’s just not normal, Mom,” Marina complained.
“I have a fish, Mom,” Aubrey said with a sigh. “That is not a real pet.”
And Wesley, poor Wesley. His behavior had improved, but the little guy remained distant and disconnected. He talked nonstop, but never a conversation. He could watch over and over his beloved Backyardigans episodes, but he rarely expressed emotion, love, or affection for anything aside from his little stuffed Piglet.
Hugging him was much like hugging a tree.
“You have to find a way into his world,” the doctor had said when she diagnosed him.
We live close to a small zoo. For years, it had been Wesley’s favorite outing. The animals didn’t require him to look them in the eye or order him around. He drew humans as stick figures with bubble heads, but even at six years old he drew extraordinary pictures of dolphins and dogs and bears. Animals, I knew, made Wesley comfortable.
The dog, I told myself, was a gift for him.
I didn’t admit how much I needed the distraction. Or how much I craved the attention of an animal. I just thought: the more affection around the children, especially Wesley, the better.
Enter man’s best friend!
It had been a decade since I had a dog, a fifty-pound Rottweiler mutt, Alva, a stray my friend Nancy and I took in during grad school. Alva had a host of quirks from street life. She ate everything, including garbage, shoes, and felt-tip markers—and routinely excreted a steamy pile upon the one square yard of carpet in our house.
She got cancer and had to have her leg amputated. You have never seen a happier three-legged dog than Alva.
But in my condition, rolling the dice on a street mutt like Alva was not an option. And puppies, they are like babies, right? I wasn’t doing that again.
Thus began the search for a dog that needed a home, but already knew how to behave in one. A real pet for Marina and Aubrey. A friend for Wesley.
A comfort for a mother in need.
So where did I find the right dog? The one to warm my little boy’s life?
The coldest place of all: prison.
One morning, I was looking up a murderer on the Florida Department of Corrections website. Yes, I did that often. Part of my job as a reporter. Past the “Most Wanted” notices, blotter descriptions, and pictures of officers in riot gear was a ticker: “Will you adopt me?” and photos of dogs graduating from training programs in Florida’s prisons.
The dogs, rescued from area shelters, lived with inmate trainers for eight weeks. They were taught to stay, lie down, release, walk on a leash, not enter or exit a doorway without hearing the command to do so. They were crate-trained, potty-trained, and vaccinated.
They were . . . perfect!
Within five minutes, I was on the phone with Sandy Christy, director of DAWGS (Developing Adoptable Dogs With Good Sociability) in Prison.
Ms. Christy recommended a dog in training. Gracie was sixty pounds, but docile, obedient, and easy to command. “She is the star of the class,” Ms. Christy said.
She sent pictures—Gracie sitting, lying, standing, tongue wagging. She was muscular and white, with a pink nose and gold eyes. She certainly looked like a lovebug.
But Gracie was five hundred miles away, in a prison near the Florida Panhandle town of White City.
I looked at the photos of Gracie. Imagined the kids flocking to be near her. Imagined her chewing my Ferragamo heels. Imagined her swimming in the pool, then plopping down on my Ethan Allen sofa. Imagined her lying beside the children at night, snacking on
their duvets. I imagined Gracie following little Wesley around when he retreated from the rest of us.
I talked to my father. He already fielded daily pickup, drop-off, babysitting, and home-improvement requests. Would he take on, when necessary, the responsibility of a dog?
“I think it’s a great idea,” Dad said. “I’ll go with you to pick her up.”
John was the wild card, one day strident about not getting a dog— “It’s too much, Susan” —the next gushing about the cutest little bulldog he saw at a shelter.
“Are we crazy?” I asked John. “To adopt, sight unseen, a dog five hundred miles away?”
“Remember,” he said, “someone adopted you sight unseen.”
A one-thousand-mile round trip later to prison and back, Marina and Aubrey charged out our front door.
“Gracie! Gracie!” they squealed.
Wesley hung back, not wanting to come out of the house. But once the dog was inside, he joined the squealing pet-fest. Gracie, poor thing, urinated on the carpet.
No bother.
Now, Wesley will never spontaneously hug a human being. Never. But that night, Wesley climbed right inside the kennel with Gracie, sat beside her, patted her (at times bordering on pounding her), talking to her IN A VOICE LIKE THIS.
And thump, thump, thump went Gracie’s tail.
“Look, Mom, she has sharp teeth!” Wesley said, peeling back her top and bottom lips. Gracie gave him a big lick on the cheek.
“Can I sleep with Gracie?” Wesley asked.
And just like that, Gracie was part of the family. The one who chased lizards. The expert digger (we joke the prisoners must have taught her that one). The one my kids greeted first in the morning and kissed last at night.
Within days, Wesley and Gracie were constant companions. When Gracie rolled on her back, inviting a belly scratch, Wesley obliged.
He no longer washed his hands after his French toast sticks, wanting Gracie to lick the syrup off instead.
He read her picture books, helped dress her in her Halloween costume (a duck), and wanted her in the bathroom when he took a bath.
Wesley loved to let her lick his face, relishing the ones right smack-dab on the mouth.
Until I Say Good-Bye Page 3