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Video: ALS diagnosis inspires family to live ‘magical year’

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updated 3/12/2013 6:01:24 PM ET 2013-03-12T22:01:24

“Until I Say Good-Bye” is one woman’s heartbreaking and inspirational account of facing her final days in the wake of an ALS diagnosis with the determination to live her life to the fullest, surrounded by the people she loves most. Here's an excerpt.

Still Lucky

It’s odd to think of my autopilot life, the one before.

Forty-plus hours a week working a job I loved, writing about the local criminal courts for The Palm Beach Post. Another forty navigating the daily dance of sibling warfare, homework, and appointments — pediatrician, dentist, orthodontist, psychiatrist (no surprise, eh?).

Hours at music lessons with my children — or driving between them.

Evenings spent folding laundry on our dining room table.

An occasional dinner with friends or my sister Stephanie, who lived down the street.

A quiet float in the backyard pool with my husband, a few minutes at the end of the day, interrupted by a kiddie disagreement over television channels or six-year-old Wesley’s out-of-nowhere request to draw on our spoons.

“Okay. On the white plastic ones. Not the silver ones!”

I felt lucky.

I felt happy.

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And like anyone, I expected that happiness would sail on and on — through proms and graduations, weddings and grandchildren, retirement and a few decades of slow decline.

Then one night in the summer of 2009, while undressing for bed, I looked down at my left hand.

“Holy shit,” I yelped.

I turned to my husband John. “Look at this.”

I held up my left hand. It was scrawny and pale. In the palm, I could see the lines of tendons and the knobs of bones. I held up my right hand. It was normal.

“You need to go to the doctor,” John said.

“Okay.”

I was too stunned to say anything else. It looked like my hand was dying. But I wasn’t worried. All I thought was, How am I going to work this into my schedule?

I visited my family doctor, a kind woman who asked me five different ways if there was any pain in my left hand or arm.

“None,” I answered.

“Well, it’s probably not carpal tunnel then. I want you to see a neurologist.”

And thus began a year-long odyssey of doctors’ visits. Of attempts to explain my withered limb. To find an answer other than the one John, who had been researching on his own, mentioned at the end of my first neurologist appointment: ALS.

To which I replied: “What’s that?”

ALS, more commonly known as Lou Gehrig’s disease, is a neuromuscular disorder wherein nerves to muscles die, causing the muscles to die as well. It is progressive, meaning it always moves forward, from muscle to muscle. There is no known cause. No treatment. And no cure.

ALS would mean the death in my left hand would spread to my arm. Then through the rest of my body. I would weaken piece by piece, until I was paralyzed.

And then, usually within three to five years of the first symptoms, I would die.

No, that couldn’t happen. No. There had to be another explanation.

Perhaps an injury? A few months before, I had fallen so hard while Rollerblading to my mother’s house that the imprint of concrete remained on my left hand for an hour.

Sure enough, I had a bulging disk in my back ... but not where it would affect my hand.

Dr. Jose Zuniga, my first neurologist, suggested Hirayama disease, a mysterious loss of muscle function disorder. The description fit my symptoms, except for one thing: most victims were Japanese.

“You’re not Japanese,” Dr. Zuniga observed.

I’ll go with it, I thought. Went straight to the grocery store and bought sushi. Passed over the wussy California rolls and selected an eel roll instead.

It wasn’t Hirayama disease.

An ALS specialist, Dr. Ram Ayyar, suggested multifocal neuropathy, a progressive muscle disorder that often begins in the hands. Unlike with ALS, there was a test for MFN. It cost $3,000. As I learned the hard way, my insurance wouldn’t cover it. I was more upset and frustrated by that than by the test result: negative for multifocal neuropathy.

I saw four specialists in six months. I traveled to Cyprus, searching for a hereditary cause.

When nothing turned up, I stopped having tests. I entered a year of denial. I mean the sky-is-green kind of denial. One so obtuse and myopic, it’s embarrassing now to admit to it.

When I started struggling with yoga in spring 2010, I had a friend take pictures of me in all twenty-six Bikram poses in the unlikely event I would be unable to continue.

At my parents’ fiftieth anniversary celebration in November, John had to cut my prime rib. I could eat fine, but couldn’t do the knife-and-fork tango anymore.

Too weak to carry my reporter’s briefcase at work, I switched to a rolling bag. “I guess ya wanna look like the lawyers,” said a reporter colleague.

I said not a word.

In January 2011, while brushing my teeth, I noticed my tongue twitching. No matter how much I tried, I couldn’t stop it.

A few weeks later, I was having dinner at my sister Stephanie’s house when I noticed her eyes widen. John was holding a fork, waiting to feed me. Wait, when had that become our routine?

“Stop it, John,” I snapped. “I can feed myself.”

For dessert, Steph served peanut butter pie. My tongue wasn’t working. “Ya trying to kill me?” I joked, after giving up on moving the sticky wad around my mouth.

I refused to submit. Consciously, at least.

But we are creatures of the subconscious. I bought the book "Buddhism for Dummies," trying to get a major Zen on and calm my mind.

I went for a long weekend to New Orleans with my best friend Nancy and our husbands. It was just after Mardi Gras 2011. So “just after,” in fact, that the streets were still filled with streamers, beads, and garbage.

Nancy wanted to tour the Hurricane Katrina disaster zone. I begged off, more interested in distraction. One night on Bourbon Street, John and I found ourselves in front of a strip club.

Now, strip clubs are not my style. I had been to one just twice before in my life, both times as a newspaper reporter.

The first time, a patron was suing a stripper after she struck him in the face with her huge stripper shoe during her dance act. The man had a detached retina and broken orbital bone.

Really.

The second time I was on a story about a missing person whose relative worked at a place called the Kitten Club. I wandered in just as she was twirling all two hundred pounds of herself round the stage. Her breasts were like twins wrestling.

“Let’s go in!” I said to John on Bourbon Street. “Let’s really take our mind off things.”

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The place was packed. We musta looked like big spenders, because the bouncer sat us right at the edge of the stage.

The act consisted of three women — nude but for their four-inch plaid schoolgirl skirts — and a dirty-looking mattress.

One woman had recently given birth, her body tight except for her flabby, stretch-marked belly. She looked as if her milk had just come in. She tried and tried to get us to plant bills between those breasts.

“Come on, honey! Loosen up!” she said to me.

“For cryin’ out loud,” I said to John. “Just give her some cash for the baby and let’s go.”

We hunted down a less skanky place — one with a vast stage and club chairs. We sat waaaay back from the stage.

The women danced on poles. They pulled themselves up and down, straddled, curled, right side up, sideways, and upside down. They posed like leaping reindeer. Distractions galore, but I stared at their hands.

Holding.

Gripping.

Strong.

I looked down at my useless left hand, knowing that I could never grip like that again. My pole-dancing days were over before they began.

The next morning at breakfast with Nancy, I reported the bad fashion news from Bourbon Street: “Leg warmers are making a comeback.”

We laughed, my hand forgotten.

Nancy and I always laugh when we’re together.

But when we hugged good-bye at the airport, I saw the truth in Nancy’s eyes. Concern. Sadness. She knew I had ALS. And so did I.

I started to cry, right there in the New Orleans airport.

“Don’t cry,” Nancy said. “Please don’t cry.”

She started imitating our octogenarian airport shuttle driver, who had talked loudly on his cell phone for ten minutes before saying, “Aw, wait, you’re ma COU-SIN

Willie!”

We laughed and parted, both drying our eyes.

Back home, I tumbled into depression.

I had held my fears at bay for more than a year. I had believed in my health, even as my weakness spread. I had immersed myself in motherhood, work, marriage, dear friends.

That spring, I began to do what I had warned myself against. Instead of living the moment, I slipped into dreading the future with ALS.

I thought of myself unable to walk and eat. Unable to hug my children and tell them I love them. I would sink into paralysis, my body incapacitated, but my mind untouched. I would understand and experience every loss. Then die with my children so young.

I began to dwell in that future. When I sat down for a meal, I thought about not being able to chew. I lay awake at night and stared at the ceiling, thinking, “One day, Susan, this is all you will be able to do. And it will happen soon.”

What I feared most wasn’t death. It was being entirely dependent on others. A burden on my family and the ones I loved.

I mentioned my fear that I had the disease to a brilliant lawyer friend. “Oh, ALS is worse than a death sentence,” she quipped. I never spoke to her again.

For a long time, I never spoke of ALS, because I believed that too, that my future was worse than death.

I should end this now, I started thinking. With dignity, on my own terms.

I thought of suicide about as often as you see a butterfly. It would flutter into my mind, and I would study it, marveling at its symmetry. Then it would flit away, and I would forget, for it was only a passing thing.

Until it returned the next day, and the next. Because my mind was a garden. Tended, cultivated, but unchecked on the edges. A perfect place for butterflies.

I thought of hiring a hit man. Go into a dark alley on the other side of town and be “murdered.” I had sat in court with hit men many times. I was uniquely qualified for a premeditated murder — of myself.

But after a while, I let it go. Dumb idea. Messy. Awful. I asked friends to help me. Then thought of how that would put them in jeopardy of being arrested. I changed my request: Come and read to me, please, when I can move no longer.

The butterfly returned, entrancing. I ordered two books on suicide from the dozens listed on Amazon. I thought deeply about my personal belief that we as human beings should be able to choose how we die.

I found an organization in Switzerland called Dignitas, where the terminally ill die as they wish: Immediately. Peacefully. Legally.

Perfect.

Then I read this: “In order to access the service of an accompanied suicide, someone has to ... possess a minimum level of physical mobility (sufficient to self-administer the drug).”

With ALS, I would lose the ability to raise a glass or even swallow its fatal cocktail. The esophagus, after all, is lined with muscles. It dies too.

I did not register for Dignitas.

I did not read the books.

Know those people who talk on and on about each headache? Who cannot sneeze without complaining?

I am not like those people.

I kept my mouth shut. I kept working. Raising my children. Living. Even John didn’t know my thoughts. Until one day, while looking for stamps, he found the suicide books in my desk drawer.

“I glanced through them,” I told him truthfully. “I thought about it. But I never formed a plan.”

“Please, Susan ...”

“I won’t. I could never do that to you.” I paused. “I could never do that to our children.”

I do not think my death will ruin my family’s lives. But I realize the way I die may affect their ability to live with delight. To live with joy.

A suicide would teach my children that I was weak.

When I am strong.

I made the neurologist appointment. June 22, 2011, four days after my son Aubrey’s tenth birthday.

I had not been to the doctor in a year, and I was tired of putting it off. Tired of the tension of anticipating the two-by-four about to whack me in the head.

I spent the evening before the appointment in Miami, alone, for I did not want to talk. John granted my wish. Love is agreeing, even when you don’t understand.

I stayed at my friend Nancy’s brother’s bachelor pad in Miami Beach. His unit was in an old open-air art deco building on the water. Second floor. I struggled to drag my overnight bag up the stairs.

He had left a key under his mat. I asked a neighbor to turn it in the lock for me.

The fridge was empty. A sheet covered the window. Pictures of his and Nancy’s family topped antique furniture. I recalled seeing the furniture in their childhood home.

Nancy’s brother, a filmmaker, had a trove of movies and books, including travel guides from around the world. I thought of my own extensive travels, of the friendship of those faces in the pictures.

I thought of the love I had known in my life. That most perfect, selfless kind felt nursing my child in the moonlight. That thrilling, romantic kind where all you want to do in the moonlight is please the other.

I am lucky, I thought. I have known remarkable love.

I am content no matter what happens tomorrow.

Nancy texted me: “Hear you’re going to Miami. Thinking of you.”

“Didn’t wanna worry you,” I replied.

I struggled to open the door to the apartment balcony. I sat outside and smoked, a habit that had become a comfort to me.

I practiced, among other things, being alone. Not a comfortable state for me. We are born alone and die alone, but all my favorite moments of life had been spent with someone else.

I thought of the victims and families I had seen in my ten years as a court journalist. I thought of how many had persevered through tragedy — and how others never recovered.

I psyched myself for my tragedy tomorrow.

I thought: When someone tells you that you have ALS, you have to steel yourself right away. No crying. No breaking down. You have to make a strong start.

I had learned this in competitive swimming, the coach drilling us on strong starts. Head tucked, ready to explode off the block.

Steady wins the race, right? That’s what they always say.

Steady wins.

Finally, I had enough of thinking. I picked the most jarring movie on the shelf: Blow. Cocaine! Violence! Distraction! Perfect! I took a sleeping pill and went to bed fully clothed.

In the morning, I took a cab to an unremarkable building in downtown Miami. People walked about in scrubs and stethoscopes, heads bent over their iPhones. I wondered which was the doctor who would change my life.

John arrived. Late, as always.

He’ll be late to my funeral, I thought. That made me smile. Never change, John. Please never change.

In the office, a kind representative of MDA (the Muscular Dystrophy Association) circulated, greeting patients like old friends. A nurse took my vitals. My blood pressure was lower than normal — 90 over 60. I breathed, slowly and deeply.

The nurse took us to an examining room.

Dr. Ashok Verma entered, a tall, distinguished Indian man with that disarming Anglo-Indian accent I like so much. Dr. Verma is the head of the University of Miami’s ALS clinic.

He looked over my records.

He asked a few questions, did some strength testing, sat back at his desk, and chirped: “I believe you have ALS.”

He sounded like he was inviting me to a birthday party. And he was smiling. I don’t know if it was a caring smile or a nervous smile, but I will always remember that smile.

Now, I had planned how I would react when I heard those words. I had steeled myself. Strong. A burst off the starting block. An explosion of energy propelling me into the race.

I dropped my head for the start ... and began to cry.

I could not stop, any more than I could stop my breathing or my heartbeat. I cried and cried.

Dr. Verma kept chirping about his ALS clinic, about how he wanted me to come there. “We have to stop pretending it’s something else.”

John was clearly annoyed. “Just hold on,” he said. “Let’s give her a minute.”

I remember snot. Snot filling my nostrils, oozing out of them. I remember thinking how cruel a journalist colleague was when he had ridiculed a man testifying, weeping and dripping snot as he lamented killing six in a car accident.

So odd, eh? What the mind remembers when.

Dr. Verma held out a box of Kleenex. John wiped my face. I composed myself enough to talk, and pulled out my trump card.

Stem cells — my own personal stash.

Around the world, researchers were studying stem cells, trying to cure degenerative disease. I recalled the story of a local police officer with ALS whose buddies held fund-raisers to send him abroad for stem cell treatment.

And I had my own private stash, straight from the font of life. When my sons were born, I banked their umbilical cord blood, a treasure chest of cells to be used to fight future disease.

“Perhaps,” I said, “there’s a researcher who could use those stem cells on me?”

“The problem,” Dr. Verma began slowly, “is that the researchers don’t know how to get the stem cells to go to the right place.”

He said he’d had forty-five ALS patients go abroad for stem cell treatment. None were cured or had their lives extended. All were left poorer. “In their pockets,” Dr. Verma said, patting his.

I had long decided, come what may, I would not bankrupt my family chasing a cure. I would not clamor to be part of a clinic trial, only to receive a placebo. I would not doctor-hunt or go Google crazy, searching for someone to give me false hope.

That’s that, I thought, as John wiped my nose once again.

We walked out in silence.

Drove in silence.

“I’m hungry,” John said, confirming what I already well knew — the man can eat at any time.

We went to Burger King. I sat outside on a parking barrier, smoking a cigarette, while John went inside for food. Now, I had watched Lou Gehrig’s farewell speech of 1939 a number of times. The one where he declared himself the luckiest man on the face of the earth, even after “catching a bad break.” Even after being diagnosed with a disease that would rob him of his talent, and then his life.

I had wondered if that was true. Did he really feel that way? Or was it a grand thought that only came to Gehrig surrounded by tens of thousands of applauding fans?

And then it came to me too, alone, seated on a parking barrier outside Burger King. No, not a muzzy moment, but my life in focus, tack sharp.

Forty-four years of perfect health. I had rarely even had a head cold or tooth cavity.

Forty-four years, and the sickest I had ever been was after I ate a bad chicken sandwich in South America.

I had three easy pregnancies, each producing a rosy, pudgy babe. Three breezy C-sections where I was walking the next day.

I had known abiding love; traveled the world; married a great partner; worked a job I adored. I knew where I came from. Adopted as an infant by dutiful parents, I had met my birth mother at age forty and the family of my birth father soon after. I knew my ALS was not inherited from them. I knew my rosy, pudgy babes need not fear my fate.

I was alive. I had a year. Maybe more, but I knew I had one more year at least of good health.

I determined, right there in the Burger King parking lot, to spend it wisely.

To take the trips I’d longed to take and experience each pleasure I’d longed for as well.

To organize what I was leaving behind.

To plant a garden of memories for my family to bloom in their futures.

Lou Gehrig was an athlete. ALS took his talent immediately.

But I was a writer. ALS could curl my fingers and weaken my body, but it could not take my talent.

I had time to express myself. To build a place of my own with comfy chairs, where I could think and write and sit with friends. Where I could wander through my own garden of memories and write them down.

A wandering that became, beyond my every fantasy, this book.

A book not about illness and despair, but a record of my final wonderful year.

A gift to my children so they would understand who I was and learn the way to live after tragedy:

With joy.

And without fear.

If Lou Gehrig could feel lucky, then so could I.

So should I.

I tucked my head once again in the starting block, steeling myself for the race.

“I’m glad that’s over,” I told John when he returned with a coffee for me, a Whopper for himself. “And I still feel incredibly lucky.”

Excerpted from "Until I Say Good-Bye" by Susan Spencer-Wendel with Bret Witter. Copyright © 2013 by Susan Spencer-Wendel. Excerpted with permission by HarperCollins Publishers.

© 2012 MSNBC Interactive

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