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Still Lucky

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Susan Spencer-Wendel

2013-04-18-FINALcoverimage.JPGIt'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.

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.

"Ok."

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.

[But soon], 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.

This post is part of a series produced by The Huffington Post as part of our continuing commitment to recognize fearlessness. To share your story of Becoming Fearless -- either your own or that of someone you know -- send a post (500-850 words), with your headshot and brief bio, to fearless@huffingtonpost.com

Reprinted from UNTIL I SAY GOOD-BYE: My Year of Living With Joy by Susan Spencer-Wendel. Copyright ©2013 by Susan Spencer-Wendel. Used courtesy of Harper, an imprint of HarperCollins Publishers.

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