My Father’s Toughest Fight

My father died on a summer morning in the low, white-painted four-poster bed he bought for me when I was 12 years old and had a room to myself for the first time. * We found two guns wedged under the mattress. Having his guns so close at hand was probably a comfort, a promise of deliverance. But in the end, this strong man who, at age 70, outran and outclimbed his juniors did not have the strength to pull a trigger. * My father died of amyotrophic lateral sclerosis, Lou Gehrig’s disease. He was 71. * He died too soon but not soon enough. He died just as I was en route home, bringing with me enough pills and enough resolve to break the law and keep a promise and help him to die. * Federal judges and church leaders and lawmakers will, in the course of the next months and probably years, be dealing with the matter of assisted suicide. Their deliberations will be abstract. Ours had a name, a ravaged body, a beloved face.

*

So vigorous and strong was my father that the doctors couldn’t believe it was Lou Gehrig’s that was buckling his legs and knotting his tongue. So they tested and tested again.

Strong as an ox, the doctors said, puzzled. Never ran into such a physical specimen.

When the ALS was at last diagnosed, he was seven months shy of his 70th birthday. He lifted weights, ran, biked, never walked when he could run. He could, to my mother’s annoyance, still fit into the Navy uniform he wore as a gunner’s mate on a destroyer that got kamikaze’d at Lingayen Gulf in the Philippines.

A high school athlete who had lettered in everything he could afford the shoes for, he weighed 180 when he graduated and stayed 180 until ALS shriveled the pounds away to 105.

It wasn’t death that frightened him. He was a lineman who had climbed electric poles for 40 years; he had lived with death among the hot wires. He had saved men’s lives, and he had seen men die.

But this was death by inches, death intolerable. My father was not a scholar, he was a doer. At 70, he was still a happy glutton for work. His co-workers called him “Gene, Gene, the working machine.”

Nothing, not even Alzheimer’s disease, could have been worse for this man.

Here was no Stephen Hawking who could change the world from a wheelchair. My restless father could not sit through a two-hour movie without getting up two or three times during the film for a little half-jog around the lobby. Our joke was that we, he and his elder daughter, had two speeds: fast and dead.

Until he fell ill, the most I ever saw him write was “I love you” on a note tucked in with the $20 bills he kept slipping into my pocket, long after I earned more than he did. Probably not since he was in high school had he written as much as he did in the last month of his life, when the disease took his voice. We keep the yellow legal pad on which he wrote his wishes. And I, child of the profligate ‘60s, smile to see that he, child of the Depression, wrote frugally on both sides of the paper.

“Get me some cereal out of yellow box . . . Give Rohan a bone . . . I feel sick every time I get up . . . Can you water the tree to the east tonite . . . lot of doves out there . . . I have a hard time breathing . . . call Patt tell her to bring extra pills with her.”

I don’t remember a time that the right-to-die issue had not been dealt with matter-of-factly in my family. My grandfather, a vigorous and brilliant engineer and artist, had talked with repugnance of being a “vegetable,” dependent, more dead than alive. All of us had assured him we would not let that happen. When he died, he died in an instant, and we mourned for our sake but were thankful for his.

My father had wanted the same assurances, and he had gotten them. Until the diagnosis, they had been an abstraction. They were no longer.

no drugs can halt als. the only hope lay in drug trials and experiments, and their registries were full.

And anyway, he would not have put up with weekly tests or out-of-town trips; as long as he was well enough to go fishing, he announced, he would fish. We gave him neon-bright nylon shorts that Christmas, so we could find him if he fell in and drowned, we told him. He laughed at that and wore them.

He had already asked about getting Jack Kevorkian and began to ask more often, more insistently. I parried that Kevorkian didn’t make house calls. In truth, I would not have my father die in the back of what we reporters kept describing as a rusted-out van belonging to a man I consider the wrong messenger of the right message.

Instead, I would find pills--enough pills, however many that would be.

The fact is, I didn’t know how much, how many.

There are doctors who are willing to defy the law to help their dying patients to die on their own terms. My father’s longtime doctor was not one of them; he would not dispense either pills or advice about them. We were on our own.

So I went to work, ferreting out right-to-die literature, Hemlock Society material, whatever I could find. I didn’t want lyrical prose: I wanted formulas, data.

The search was furtive and careful. Someone thought someone over here could help me. Someone else gave me a phone number and a first name of a nurse who could tell me about body weight and dosages.

This was the secret part of my days. In public, I went about my reportorial chores in this big, messy city, where criminals high and low, white collar and blue, flaunted their crimes--and yet here I was, forced to sneak around to be able to render my father the last and loving service he wanted.

I pleaded more migraines than usual and piled up pills like treasure, consulting the PDR to learn each type, each dosage strength, keeping a tally against the day I would have enough.

I heard that prescription drugs were sold at seedy flea markets, so I went to seedy flea markets.

I wrote out a script for myself in Spanish to use in a pharmacy in Mexico, in case I needed to go farther afield-- somewhere well south of the border towns, I was advised, because border town druggists can be wary and reluctant.

My father had to be readied, too. We could not afford for his system to rebel against the medicines he would be taking in such quantity. He couldn’t throw up the irreplaceable pills; I had read of someone who had, who was forced to eat his own vomit in order to die, because there were no more pills.

My father was trying to die with dignity; I would not have him eat his own vomit. So he practiced drinking milkshakes, to find the flavor and texture and temperature that would lie calm in his belly and keep the pills down.

And then, the liquor. My father hadn’t had a drink since V-J day. He hated the stuff, wouldn’t even take a cold beer on a hot Arizona day. But liquor would make the pills work faster, so he began drinking vodka in his tomato juice, to get his body accustomed to it, to speed the work of the pills when the time came.

My father changed his designation from organ donor to non-organ donor, not wanting someone to get a liver, a heart that might be drug-saturated or, worse, not knowing whether toxicological scans of donor organs might pick up traces of barbiturates.

For my part--and I didn’t tell him this--I had decided on which lawyer to retain if I had to.

I don’t remember the last time my father was strong enough to go fishing. For his final birthday, I gave him a pillow upholstered in fish fabric and asked what kinds they were. “Crappie, smelt, muskie, trout,” he wrote wistfully.

The writing grew feebler; my mother lay awake at night, all night, for the sound of a fall as he dragged himself to the bathroom on a walker.

“What is today? . . . tell them I take my own life . . . you don’t do autopsy. when is Patt here I can’t do anything . . . I loved you from the first day. I cant write I cant shave I cant wash my neck or ears . . . “

The diagnosis had given him three to five years of life. It may be life, he said, but it isn’t living. He died in 19 months.

My father was a man of immense strength of will. I was a high schooler when he asked what I wanted for Christmas. I want you to stop smoking, I said. He went into the bathroom, finished the cigarette he had lit, tore up the rest of the pack and flushed the whole mess down the toilet. He never touched a cigarette again. So on the day we had planned to be his last, as I was readying myself for the trip home with the dosages worked out and the death watch in readiness, my father died.

It is possible that he exerted his great self-control one last time, willing himself to die, to spare us all what we were about to do, what we hated to do but had to do.

My mother calls that his greatest gift to us.

I say his greatest gift was himself. The only thank-you left to me was to give him back to himself, even if that meant breaking the law. And in this country, in this time, it still does.