Until I Say Good-Bye (11 page)

“Please find me a breast pump!” I begged. “And not a cheap one. The Cadillac of breast pumps.” It felt like my breasts were going to explode.

But oh, the amusement of thinking of all that now. I've relived with joy those nights of pain, when my tiny child bit me like a demon. That sweet life in my arms. That milky breath. My husband at my side, bringing her to me to nurse in the moonlight. Then laying our baby back so gently in her bassinet.

Marina, you put an end to our traveling days.

Marina, you catapulted us into the parent years. That phase of life where days are interminable and years are over in an instant.

A time I wish was longer. A time I would not trade for anything.

A Couple

W
e tried for another child awhile before he came—a son, Aubrey, in 2001. Such a content, adorable baby—he was as chubby and content as a Buddha—that we mulled over another, and
shazam!
there he came, Wesley, in 2003.

Suddenly, I had three children under the age of six, while working full-time. Naturally, our marriage suffered. John and I became like furniture to one another.

We were so strained, we considered separation.

But as with an old comfy chair, we were reluctant to let it go.

Both sets of our parents have been married fifty years. We thought of their example. We stuck it out, moment by moment.

We rarely did anything alone, just the two of us. John had quit teaching. Why? Try forty students, twenty-five desks, and twenty books. He became a pharmaceutical sales rep for GlaxoSmithKline. Occasionally, he would win a Glaxo trip. We went to Vancouver in 2006. For a decade, that was our one big couple trip.

Then, in the summer of 2009, John won a trip to Hawaii. It was during the packing and planning that I noticed my withered hand. I delayed a follow-up neurologist visit till after the trip because, let me tell you, when you're looking at an all-expenses-paid vacation to Hawaii, there is not a whit wrong in the world.

Forget temporary health setbacks. That summer, my chief concern was finding (tasteful) silver heels to match my (tasteful) silver bangles to match my favorite blue tube dress for the luau.

And did my turquoise batik sarong truly match my swimsuit? Oh my! Now that's a reason to worry.

In August, John and I left the kids with Nancy and Stephanie and flew to a Technicolor dream. The Royal Hawaiian Hotel in Honolulu was resplendent with antiques and painted an elegant pink, unlike the cotton-candy schmaltz of south Florida. The Pacific Ocean was violet offshore, aqua inland. The leis glowed magenta, and the evening sky orange.

Glaxo had the whole trip planned, an activity for every minute. A pig roast luau. A dance. John and I took a surfing lesson and rode horses at a ranch overlooking the ocean. We stood on a cliff, side by side, and watched a huge mango sun sink into the sea.

A moment to remember, like John as he glided through the swimming pool in 1991. Or ice in the Danube during our first year in Budapest.

Near the end, we kayaked with a guide to Lanikai Beach, oft-voted one of the most beautiful beaches in the world. The sand was white with the texture of flour, but no powdery residue. I called it “magic sand.”

Just offshore was a coral reef, with stands rising out of the water as the tide receded.  We swam on it, watching tropical fish and anemones wave to us in the current. The colors glowed: orange, yellow, purple, blue.

The peace was shattered by a pharma rep from New York, panicked over a pair of nurse sharks. He climbed atop the reef, hollering, “Shawk! Shawk!” It might have been funny if he had not damaged a thousand generations of coral.

Dolt, I thought, plunging my head into the wondrous clear water, sharks and all.

There were moments of concern in Hawaii—when I couldn't tug my tube dress down or manage a skewer of shrimp with my weak left hand—but I hardly thought of that. Back in West Palm Beach, I made an appointment to see the neurologist, then stared at a photo of myself on Lanikai Beach.

The perfect screen saver. The last healthy moment of my life.

I
told John he didn't need to come with me to see Dr. Zuniga, the neurologist. He insisted on coming anyway.

“Why?” I asked.

He did not tell me at the time, but he had been discussing my symptoms with his doctor friends. He was so concerned, he had begun pulling over on the side of the road between sales calls, too worried to drive.

John was quiet while Dr. Zuniga examined me, tested my muscles, then scratched his head and said he was puzzled.

“So you don't think she has ALS?” John blurted out.

“Oh, no,” Dr. Zuniga said quickly. “Susan's so young. And it's contained in the hand. ALS usually spreads quickly.”

John fell back in his chair. “Thank God,” he said. “Thank God.”

I looked at John. Then Dr. Zuniga. “What's ALS?” I asked.

John wouldn't discuss it. I Googled it. Once.

It rattled me so, I never did it again.

Instead, I went into denial. John never did. After twenty years, he was more attuned to me than any person on the planet. He noticed a slight slur in my speech in late 2009, long before anyone else. He said not a word to me about it for six months.

It was even longer before he admitted that he would roll over in the middle of the night to put his arm around me, and that he could feel, because he knew my topography so well, that something was wrong.

When I was pregnant, he would wrap his arms around my expanding body. He loved to feel the changes.

Now he felt me wasting away.

He was afraid. But he did not pull away. Moment by moment, and muscle lost by muscle lost, John and I grew together. Through all the bright-line moments, he was supportive and steady.

Steady as a trapeze artist. Even as reality became grimmer and grimmer, as the thin wire rose higher and higher, and there was farther to fall.

By September 2011, I was wound tight. My appetite had been diminished for months, part of my ALS. It all but disappeared as I watched Mom starving in the hospital, her digestive system so beaten she couldn't ingest anything by mouth.

It was a celebration when she was allowed an ice chip.

I was so tense, I ground my jaw to the point of pain. I couldn't sleep. I would go an entire day without eating and not even be tummy-rumbly at the end. I dropped two sizes, to 00 pants.

Our friends tried to help, each in their own way.

Which, for one, meant gifting us with a large bag of marijuana.

This friend had long battled addictions of all kinds. He told me my situation had inspired him to live clean. Instead of throwing out his pot—“Impossible! It's really good shit!” he said—he was donating it to me. “You have much more use for it than I do, Susan. It will help with your pain.”

I could count on one hand the number of times I had smoked pot in the preceding fifteen years. I had never bought it, and only inhaled on the rare occasion when it was offered (by my birth mama, for instance). I had a respectable job and three children. Those were my priorities, not reefer.

Plus, it was illegal.

But . . .

I was stressed over Mom to the point of wearing down my teeth. I was in pain from my broken clavicle, which had to set naturally. And I was terminally ill.

I needed a freakin' break.

Pot, I remembered from my college days, usually made me eat and laugh like the dickens. Both of which I needed to do.

I enlisted John to the cause. After all the difficult tasks of the last two years—tasks more mental than physical, although the physical period was coming—this was a request he didn't mind.

Ideally, we would have smoked up at home, eaten an entire pint of Sea Salt Caramel gelato and watched the Science Channel stoned to the bejesus. But not with our children nearby.

So John and I plotted a night out to smoke pot and eat ourselves silly at our favorite Mexican restaurant.

Now we had another problem: where could two responsible adults smoke pot and not have to drive impaired to their Mexican chowdown?

The restaurant was in downtown West Palm Beach, near the courthouse where I had worked as a reporter. A courthouse where people arrested for marijuana-related crimes appear every day. We should, we both realized, park and smoke, then walk to the restaurant. And the closest site devoid of traffic and pedestrians was said courthouse.

So that night, we pulled up in our van on an empty street aside the ginormous dark courthouse. Crept up, really, like two criminals in a bad cop drama. John rolled a joint, and—doh!—a light went off in my head. Sheriff's deputies patrolled the building's perimeter. Not a good spot, ya dolt!

Thinking I was so clever, I told John to pull north a block to another dark, deserted street. Now we were beside a tall hedge and the offices of the prosecutors, including the chief prosecutor, who was no fan of my reporting.

He was a thin-skinned politician who resented it when reporters asked real questions like: “Precisely how many taxpayer dollars did you spend hiring a fashion consultant for your office?”

Perfect. We fired up.

Pretty soon, a haze built up in the van. I put my window down and puffed away, exhaling out the window. John and I laughed about how we looked like a Cheech and Chong skit, just two heads in the cloud.

Then we heard voices. They were coming from a few feet away, on the other side of the hedge.

Here's how Cannabisconsumer.org describes the effect of pot: “Cannabis use can increase focus and concentration, making a person's moods, sensations, and experience seem more intense. Your heart might feel like it's pounding, the music fantastic, this is the best dessert you've ever eaten and wow, get a load of how beautiful nature is.”

And then, FAR DOWN the page, another effect: paranoia.

Yes, pot makes you intently focused. How yummy those Cheetos are, how cool those space wormholes. But God help you if your thoughts turn paranoid, because those are amplified, too.

Those voices in the hedge—and let me tell you, they were enhanced to seem like they were coming from right inside the van—sent one thought rattling around in my head: Pot is illegal. What we are doing is illegal.

And like fools we had brought the whole flippin' bag of weed. Which surely ramped up our chance of being arrested if caught, right?

I told John to drive away from the voices. No, not so fast. Okay, too slow. He eased up the block and I turned, real casual, to look behind the hedge.

And there they were: two sheriff's deputies, leaning against their squad cars, talking. I had been blowing pot smoke
toward
the cops, from six feet away.

Suddenly I was very stoned. And very paranoid.

Surely they musta smelled it.

Surely they were comin' after us.

Surely there would be a manhunt for our van, and they'd run my tag and know it was me.

And surely my ass would land in the newspaper—“
Post
Crime Reporter Arrested: Top Prosecutor Thrilled!”

I wanted to go home. But John's stoned mind was intently focused on something else: Nachos.

Again, the man can eat at any time.

We walked to the Mexican restaurant, arm in arm. I could hardly eat. I was so nervous, I scanned the crowd for deputies coming for me with handcuffs unlocked. Everyone in the place was glancing our way. And the waitress kept smiling. Why? She knew. Everyone knew.

John finished his meal and mine. All that trouble, and I ate maybe four bites of Mexican food.

We left without incident and took a cab home.

As I lay down that night, I realized I was still stoned. I vowed never to do such a foolish thing again.

“Next time we're staying home,” I told John. “Eatin' gelato and watching the Science Channel.”

The Conversation

I
t wasn't until Christmas, when I'd finally had the chance to experience some peace within my illness, that I became concerned for John. He was strong, but he internalized. He rarely, if ever, talked of how he felt.

I heard him say: “I'm glad I'm a pharmaceutical rep, because between appointments, I can pull over to the side of the road and cry.”

I worried because he was the one Aubrey went to and asked, “Does Mom have muscular dystrophy?”

“No,” John told him. “But what she has is similar.”

When I think of which role is worse—to be the spouse dying or the spouse surviving—I think it's the latter. The survivor will experience the same grief, will live the grief of the children, then must assume the responsibilities and slog on.

Already, I knew, the responsibilities were overwhelming John. The cooking. The cleaning. Trying to get our children to stop bickering and help. It was like an alarm clock went off every fifteen minutes with those three.

John dressed and bathed me. Paid the bills. Prepared food. Fed me when I was too tired to hold a fork, talked for me when my tired tongue slurred words so badly no one but him could understand.

He remembered appointments. Attended school meetings. Kept our family calendar. He took over from me as the family organizer and information center, the parent who always knew what was going on.

He was the one who had to dress his fashion-conscious wife. The buttons, zippers, snaps, hooks, ties, sashes, belts, pads, buckles, the underwear that can only be worn with certain items of clothes.

“I can't wear those,” I told John one day, when he brought me a pair of cotton underwear. “I need a slippery pair.”

“What does that mean?”

“A pair that won't stick to the dress.”

“Huh?”

“You know when you see a woman's backside, and her dress is plastered to her butt like a piece of chewing gum? That's because she doesn't have slippery underwear.”

He sighed. “I need a manual.”

I knew John was hurting, but he didn't want to take an antidepressant. He had a friend he could talk to, he told me, a woman who had lost her husband in a bicycle accident. They talked of which was better: a sudden absence or inevitable decline.

I urged him to go to the doctor. He had always been so calm and reasonable. Now he was yelling at the children and tearing up at stoplights.

Aubrey came to me one day. “He yelled at me to practice my trumpet. He told Wesley to go draw pictures. Mom, Wesley draws pictures all day. That's all he does.”

It's true—because of his Asperger's, Wesley often draws for hours. He has an extraordinary ability to reproduce things he sees, especially princesses and his beloved Piglet.

“I know, honey,” I told Aubrey, hugging him as best I could. “Please practice your trumpet.”

John finally realized he needed help one day as he dressed me. Each tie, each lace, each zipper, he wept.

John's boss was a Jamaican fellow whom he admired, a man with a peace about him. “Sometimes ya just need a bump, mon,” he told John.

John started the antidepressant Wellbutrin. He cried less, yelled less, chuckled more at the TV commercials.

He still had his doubts. Not about the unmanliness of taking mood medicine—John's not macho—but about its effects.

“It keeps you in a box,” he said. “It cuts off the highs and the lows.” He didn't like not being able to feel the same joy, but he knew it was necessary. “The lows are just so hard,” he said. “So hard. And they are with me all the time.”

I helped him as best I could. I tried to keep drama, complaints, requests for help, and tears to a minimum. I refrained from declaring things like, “Honey, I can no longer lift my left arm,” because what an unending cascade of “I'm sorrys” that would start.

I had a uterine ablation, a surgical procedure that scraped away the lining of the uterus, reducing blood flow. I didn't want John to have to deal with periods, too.

We hired a woman to clean and help around the house, a Haitian woman named Yvette. Nancy recommended her. We all love her.

Yet I still wanted John to help me, feed me, bathe me. No one made me feel safer than he did. He knew just how to lift me gently and support me as I walked.

We talked about everything. I may have been circumspect with others, but with John no subject was off limits.

It was hard for me to say, “When I can no longer stand . . .  ,” “When I can no longer eat . . .  ,” “When I can no longer speak . . .”

It was hard for John to hear.

Hard. But necessary.

I made clear my end-of-life wishes and my hopes for him when I die: that he remarry. That he find some gorgeous woman who (unlike
moi
) would do triathlons with him. That he bring her to live in our home, no guilt.

It didn't even need to be said, “Choose someone whom our children also adore,” such is my absolute faith in his judgment.

John listened when I spoke of the future, but rarely replied. He focused on immediate tasks. He almost never spoke of his own hopes in a life without me.

Until late one night, after a few drinks, he got serious and said he was ashamed to tell me something.

Lord, I thought, what could it be?

He said that after I die, he wanted to go back to school to become a physician's assistant. That it was a better career for a single father of three, and that he believed he would be good at it and enjoy it.

I was thrilled! A new career, a giant change-up in his life, would speed burial of the past.

“Don't ever feel guilty to tell me what you hope for without me,” I said, my curled fingers resting on his hand. “It comforts me, John. It makes me happy.”

I now study anatomy. I had often struggled to explain to John precisely where the itch was I needed him to scratch. So I am learning the lingo: “Right posterior second metacarpal, please.”

He scratches in the exact right place. I smile. John is learning anatomy too. He is learning to be a physician's assistant with a real patient.

I am doing what I can to launch him into a life without me.

Joyfully.