DENISE GLASS’S VOICE was slurred and strained, as if she had to deliberate each syllable before it could be uttered. By now, our long-distance conversations regularly left me thinking that mere talking must be exhausting for her. Her phone call on this autumn day was breathy and urgent, betraying her need to clear the air about some issue.
“Richard, I have to ask you something. I want you to tell me the truth,” she instructed. “You keep saying not to pick you up at LAX,” the airline code for Los Angeles International. “Are you afraid to ride with me because I have ALS?”
Silence. I thought I detected an implicit accusation in her question. “No, Denise,” I replied slowly, feeling my way along. “I just did not want to inconvenience you.” I stopped. “And besides, why would I worry about speeding along the Ventura Freeway in a van, going eighty miles an hour, maybe, sitting in the front seat next to a tiny woman who can barely see over the wheel but is driving, and who, by the way, has ALS? I mean, what could go wrong?”
Another silence. This one had me worrying that I might have gone too far this time. Denise and I had been talking with increasing frequency and intensity on the phone. And our long-distance dance was drawing us ever closer to a painful reality. We had to meet face-to-face. Only then might the walls come tumbling down.
Maybe this woman did not find my remark so funny. Laughter does not come easily in a conversation about ALS. I well understood why Denise would be defensive, would be checking her radar for indications of condescension or just plain ignorance.
A familiar easy giggle across thousands of miles carried the reassuring answer: I had not destroyed our evolving relationship with my clumsy attempt at using humor to defuse the awkward moment, something I had been doing for so many years in dealing with my own struggles with illness in an indifferent world.
But would Denise rise to the occasion? “Yeah,” she got out laboriously. “Who knows what will happen with me behind the wheel?”
In the back of my mind, I wondered the same. ALS was new to me, with one more letter of the alphabet and, in most cases, many times the pain of MS. Denise behind the wheel did seem slightly scary. “Well,” I remarked, “I figure you know what you are doing, and I assume you have no plans to kill yourself.”
Again there was a pause before her flat reply: “Yet.”
To that, I said nothing. Yet.
I ARRIVED AT LAX in warm autumn sunshine a few weeks later. The temperate clime was a welcome contrast to the parade of dank, cloudy days at home in New York. “Don’t bother coming inside the terminal,” I had told Denise. “I’ll meet you outside baggage claim. It’s a hassle inside, and you’ll never get past security without a ticket.”
“Yes, I will,” she answered sharply. “Just leave it to me.”
Fine. I was learning not to argue with her, at least about airplanes and cars. “I, of course, will not know you,” I pointed out.
“What should we do?” Denise asked.
“Just stand at the gate, holding a large balloon,” I suggested with a self-conscious laugh.
When I emerged through the gate into a moving mass of humanity, walking shakily on legs that too often seem part-time partners, I heard a soft voice saying something slowly and none too crisply. “Richard,” I heard again. I looked to my left and came face-to-face with a large blue balloon. I cast my eyes down a ways. There was a pretty blonde with a large, pretty smile.
“Denise” was all I could muster in my halting, hoarse voice. We each seemed suddenly shy, despite our frequent telephone conversations. Here was my mail-order bride in the flesh, there to greet me after my long push west. Two thoughts flashed across my mind: Denise Glass seems tough and fragile at the same time. And, boy, is she short.
Denise, then forty-seven, stands at just four feet, eleven inches, but she can carry herself as if the world were hers. I eyed her tentatively as we began our trek out. She pushed her way slowly but determinedly through the crowds, down the concourse, and through baggage claim, to the parking lot.
Her gait was as deliberate as her speech. The little lady’s energy was high, as were her spirits. I silently smiled at the sight we must have made: a tiny woman hobbling uncertainly on a pink flowered cane, keeping apace of a half-blind giant shuffling along with his plain wooden cane.
As we moved along, Denise laid out a schedule for my visit. First, we were going to pick up some lunch. Then we were going to talk. “Denise, I plan to invade your privacy,” I had warned her in one of our phone conversations. “I plan to ask you a lot of prying and personal questions about your life. I want to hear your story.”
There was the usual pause. I could sense her mouth gearing up to manufacture words. “Come out to California,” she had replied with a soft chuckle, though even getting out the name of her state seemed tough. “You don’t scare me. I am ready for you.”
Denise was living in Calabasas. This community of more than twenty-five thousand sits in the craggy Santa Monica Mountains northwest of Los Angeles. The area has grown wildly as a suburb of L.A., with traffic streaming up and down near the California coastline.
Still, there are the parks and hiking trails coexisting with shopping malls and apartment complexes. Calabasas was an ideal base for a Californian like Denise, who thrived on the outdoors. Since the onset of her illness, nature had also become a refuge from her radically changing health.
We drove to a favorite spot high above the Pacific and climbed up a short trail. Sitting on a wooden bench above the crashing waves, we began to talk. When we wandered too far into the future, the conversation came too close for comfort. Denise switched gears and tried to talk about me. Questions about the final stages of ALS were asked, and Denise became vague, occasionally just turning silent, as if unplugged.
Gradually, I was getting glimpses of a very different Denise from the woman on the phone. Hiding is easier when the other person cannot see, and now I was in her face. The calm, in-control woman she put on display for me and most of the world was not so much at peace. Composure had taken up residence on the surface. Just below, a cauldron was bubbling.
“It is all gone,” she said in a broken whisper, letting the tears trickle as she described how ALS had robbed her of her dreams and transformed her life. And she spoke of an empathy that had been born. “I see life differently now. When I see someone in a wheelchair or on a walker, I want to go up and hug them and say, ‘I am sorry you are sick. I know how you feel.’”
Denise has become a raw, frayed nerve. “I feel for them and for me. I know I am going to be there. I am frightened. I try not to think about it. But it is becoming more and more of a reality now. The disease moved slowly for a while, but now it is progressing. I am falling more now. It is frightening,” she repeated with a faint quiver. I envy her emotion. Mine is buried who knows where.
Denise’s cell phone rang suddenly. Would we drive to Beverly Hills to visit another ALS patient and his family? a mother wondered. Denise turned to me. I shrugged. “We will do whatever you want,” I said. “This guy is in lockdown,” she told me in a soft voice. I nodded blankly, not knowing what that meant. The timbre of her voice gave me pause.
We headed south along the Pacific. ALS seemed an ugly subject for such a beautiful setting. We drove into Beverly Hills, turning corners past manicured lawns and large homes that marked lives of privilege. Except for the place whose driveway we turned up.
We parked the car and walked into a spacious ranch house, where we were greeted by an older couple. Almost immediately, we were led into an adjoining room and I saw what Denise so feared. Now would come my first contact with the terrifying cruelty, if not certainty, of this neurodegenerative disease.
Neil just lay there. He was a man in his forties, alone in a hospital bed placed in a well-appointed living room. He looked healthy, pink-skinned and bright-eyed. But he was inanimate, a statue in repose. Neil’s limbs were immobile, his lips still, without a twitch or quiver. His eyes were unblinking. Every five minutes, a soft alarm sounded, a signal for a full-time nurse to put drops into his frozen eyes. A feeding tube kept nourishment coming, a ventilator sent oxygen pumping to make breathing possible.
Neil had been an academic ophthalmologist, a well-educated man with a vigorous body and an agile brain. His fertile mind remained intact, but now was imprisoned in a motionless body. Total lockdown had lasted four years. Neil had had only limited speech and use of his limbs for almost four years before that.
The young physician’s only means of communication through the lockdown years had been by polygraph, a lie-detector machine, whose electrodes were hooked up to his body. A companion or visitor would say something to Neil or point to a number or a letter of the alphabet to slowly spell out a word, then wait for Neil’s involuntary response to be translated by the machine.
This had become a private language that only Neil’s close family could understand. His needs and wants were laboriously, though reliably, determined by this long process. Both parents said they had developed their own instincts, a sixth sense for what Neil needed. Neil could communicate that something was wrong. His mother said he diagnosed his own complications and always was right. “Neil still is a great doctor,” she told me.
Neil resided with his parents, who were retired and ready to take on his care. Neil’s wife and two teenage sons lived in the neighborhood and made frequent visits. “Neil is watching those beautiful children grow up,” his father said with satisfaction.
A man cut down in his prime, a part-time family, and communication by committee seemed unacceptable to me. In the end, interacting through lie-detector tests is a guessing game as much as a science and certainly a scene right out of the movies. Why was this poor guy’s life being strung along? I could not imagine myself wanting to continue on in that situation. Is that presumptuous? I wondered.
“We communicate with Neil and know he wants to go on,” his father, a retired surgeon, assured me. “Neil’s brothers wonder about keeping him alive, but he is clear. He wants to live.” Neil had been hospitalized with renal failure, his kidneys shutting down. “Neil made the decision himself to go on dialysis.”
Neil’s ability to reach out to others had been evolving. The family was working with two corporations deep in the space-age communications business. Their specialists were using the ailing doctor as a guinea pig. Infrared light was beamed to his forehead, measuring blood flow in the brain. “Neil can tell us a lot about his life.”
“They are perfecting programs to control devices. There are robotic arms. This has worked in the lab,” Neil’s mother said.
“Does this give you hope?”
“Oh, yes. This may be around the corner.” Neil’s mother looked away. “Neil knows this may not happen in his lifetime, but we have to help others.”
As I took in the spectacle, Denise was taking slow steps back, seeking distance, it seemed, as a defense mechanism. She stayed away from Neil’s line of sight, longing to be invisible. For her, Neil’s bed was a world away. Her thoughts remained her silent possession.
I took a breath and walked to the edge of the bed to begin a one-way conversation with this man. I told him about the book and my life, my hopes for reaching out to patients of all diseases. The ventilator offered the only sound in the room as I paused. Neil’s gaze was steady. I looked into his eyes and imagined he understood. Denise continued to say nothing.
My eyes were opened on this afternoon. I saw ALS more clearly in one hour than most witness in a lifetime. Probabilities, perhaps inevitabilities, were screaming into my head. This was the real thing. Southern California sure looked different from this block of Beverly Hills. “This is a freaking wax museum,” echoed through my head.
As we pulled away from Neil’s home, I looked over at Denise. She sat silent behind the wheel, eyes fixed forward, just staring. I could not look at her again until we had traveled a good distance. When Neil died almost three years later, Denise says she gasped before the inevitability of it all set in. She knew she was on the same road.
EARLY THE NEXT morning after meeting Neil, Denise picked me up from my motel and we drove to one more park. We walked to a bench in a quiet corner, took out supplies and prepared to talk. As I fiddled with a tape recorder, I looked up and saw Denise laying out a line of carefully sliced lemon wedges. She seemed to labor casually, forming a neat row but making no mention of the task.
What an odd ritual, I thought, lemons at the ready. We began another difficult conversation. Emotions skyrocket when talk turns to threatening illness. As our conversation grew intense, Denise became teary-eyed and soon began to cry. Without a word, she picked up a lemon wedge and sucked on it, continuing where she had paused.
“Denise,” I interrupted, “what are you doing?”
“When I cry, the mucus builds up and can block my breathing,” she explained in a thick, halting voice between sobs.
“Is that clogging dangerous?”
“Oh, yeah,” she sort of said. “The lemon cuts the mucus. It unclogs my throat.”
From that moment, lemon wedges were on the menu for our meetings. And whenever Denise began to choke on her mucus, we repeated a mantra. “Go suck a lemon,” we would say in unison.
The ritual of the lemons revealed Denise’s strong streak of self-reliance. When a meeting was planned and the day was young, she could be found at her kitchen counter, preparing her survival kit. She would talk to herself, quietly rattling off what would be needed that day. Preparing the lemons was her calm before the storm.
The lemons also gave evidence of how careful Denise had had to become. She lived on a tightrope. She ate and drank selectively as a matter of routine, avoiding a growing list of foods and beverages that might choke and kill her.
Personal destruction, indeed disintegration, is what ALS—amyotrophic lateral sclerosis—is all about. This neurodegenerative disease is commonly called Lou Gehrig’s disease because that’s easier to say and sounds less foreboding. Lou Gehrig, the 1930s Yankee baseball star, was an American icon, and putting his name on the disease that killed him placed the illness front and center in public view.
But ALS is not sport. The illness is as bad as it gets, bringing on terror, not simply fear. The disease usually strikes people between the ages of forty and seventy. As many as thirty-thousand Americans, more men than women, are afflicted at any given time. Every ninety minutes, someone is diagnosed with or dies from ALS. There seems to be an increased rate of ALS among veterans of the 1991 Gulf War.
At first, I felt a shortness of breath just being in Denise’s company. Sheer anxiety, I decided. What do you say to someone who is going to disintegrate and die? A lot, as it turned out. And Denise had a lot to say back.
With ALS, there can be no realistic optimism. There is only the hope to live a little longer and be spared the worst horror before the inevitable slide down. What is that like? How does anyone handle such a grim future? ALS offers no more than a journey with a most certain end and no knowable schedule. That is true of life, but ALS accelerates the scheduled departure considerably.
When Denise and I met, she had been living with the disease for five years. Her ALS is known as nonhereditary sporadic ALS, a form that randomly strikes any person and any part of the body. Denise’s ALS first attacked the bulbar region of the brain, damaging her speech and her ability to swallow, but eventually, in a process called limb-onset, it journeyed down her spine to affect her arms and her legs and points between. There is no cure for this, no treatment. Nothing.
People with ALS survive, on average, four to five years after diagnosis. Some live a shorter time, others significantly longer. “Stephen Hawking, the scientist, has had ALS for thirty years,” Denise pointed out, reassuring me and herself. “A woman in our ALS chapter has had it for twenty. Mine is slow. It could speed up. Who knows?”
HOWEVER LONG HER life, this, certainly, was not the life Denise was raised to expect. She grew up in Woodland Hills, a middle-class suburb of Los Angeles. “We had a very normal family,” she said. “I have parents and a sister and two brothers. I am the second child, which is different than the first.”
How? I asked, a middle child myself and instinctively knowing the answer.
“My sister got the new stuff. I got hand-me-downs. My mom sews, and she made me clothes, which was good because I was so small.” In other ways, too, Denise felt she did not keep pace with her siblings. The family was big on achievement and success. “I always felt I was less of a student,” she remembered. “School was hard for me.”
Still, she harbored traditional ambitions and hopes. “That you go to college and work, and you meet a nice guy, and get married, and have kids, you know, the fantasy. And I did try to live it. I went to college and could not wait to start working.” She looked around her cluttered kitchen. We were back at the house after a frenetic day of running around L.A. “I moved out and was on my own at twenty-one and worked my brains off. I would always give one hundred and ten percent.”
The fantasy faded for Denise, as happens with everyone. Time and experience interceded. She did not make it to a full college degree. Her career did not measure up to what she wanted. She had to handle a failed marriage and, more devastating, a pregnancy that ended in miscarriage and a hysterectomy. The dream had paled but was not snuffed out, until ALS came her way.
Denise had bounced around, changing jobs with some frequency. She was a legal secretary here, an executive assistant somewhere else. She also had human resources credentials on her résumé. Then Denise decided it was time for a change. She created her own business, building a list of clients for whom she provided all three services. Ultimately, she did not take to the grind and retreated back to the cocoon of corporate life as an executive assistant.
Late in 2000, Denise began to notice that her speech had slowed and swallowing was becoming difficult. “I did not do anything for a while,” she said. “I told no one, but the difference was becoming obvious. My family asked, ‘What is wrong with you? Why is your speech so slow?’ I said, ‘I don’t know. Everything feels the same, but it is slow.’”
Denise’s internist referred her to a neurologist, who examined her but showed little concern. The doctor ordered an MRI, later announcing his diagnosis. “‘Stress,’ he told me. ‘You need to get the stress out of your life. Get rid of it.’ He was the doctor. Who was I to question the diagnosis?” Denise may have been in the early stages of denial, a definite possibility since she might have known better, given a personal experience.
Only three years earlier, she had watched her boss, Harry, succumb in slow-motion to ALS. “His speech was not as slow as mine,” Denise remembered, “but it was more garbled.” As months passed, Harry’s symptoms grew worse. No one, least of all Harry, seemed to know what was wrong.
“Harry thought, ‘Oh, maybe something is the matter with my jaw,’” Denise recalled. Based on her account of events, Harry seemed reluctant to learn more. “He was a lawyer and had to go to court, and he sounded like he was drunk.” That should wake a guy up. “Well, Harry finally ended up going to the Mayo Clinic, and then he got the diagnosis.”
Denise seemed to be following Harry’s lead, looking away and denying the possibilities. “When I started noticing my speech and my swallowing and having problems with my saliva, Harry did come to mind right away.” And? “And I would think, ‘Nah, it cannot be ALS. It can’t.’”
“So were you in denial?” I asked.
“It was wishful thinking, I guess,” she replied.
“Not denial?”
Denise paused. “Not denial.”
Right.
Doctors kept offering Denise hideouts. A year after seeing the neurologist, and with her difficulties only increasing, her family began to wonder if the problems were all in her head. Denise again called her internist. He referred her to another neurologist.
The second specialist did another MRI and a swallow study. Myasthenia gravis, he informed her. “He said he was sure, and he gave me medication.” And then? “The medication made me so sick that I had a very hard time swallowing it,” she said.
Denise was now zero for two. She was being taunted by a cruel disease and had the Keystone Docs on her case.
“How do you account for these misdiagnoses?”
“They were wrong,” she shot back, “dead wrong.”
“Were you angry?”
“This is not uncommon for ALS,” she observed.
“Yeah,” I said. “Were you angry?”
“Yes.”
“It is very hard to diagnose ALS,” Denise said. “It is not a common ailment.”
“When did you figure it out?” I asked.
“When the medicine for the myasthenia gravis did not work, I thought of Harry again. And I just knew I had ALS. And it was getting worse.”
When she confronted her internist for the third time and told him her belief, he sent her to an ALS specialist at UCLA. “She is a wonderful woman with a heart of gold,” Denise said. “She had me do a swallow study, but on video, not one where they take still pictures and cannot see anything going down.”
Denise got the official confirmation of ALS in August 2001. “I went to UCLA with my parents.”
“It is a death sentence to tell you that you have ALS,” the doctor told her. “I cannot tell you any more about how long you have. We cannot do anything for you. Just try and stay as healthy as you can,” the doc advised. “Eat as much as you can,” she went on. “Do not lose weight.”
Denise was being advised to gaze into the future and prepare herself. “When the ALS progresses, a feeding tube is necessary, and you automatically lose weight.” Denise was choked with emotion as she finished her account of the diagnosis. She had to pause. “Go suck a lemon,” I suggested, not knowing what else to say. And she did just that.
I looked back to the moment of my diagnosis with MS, a life sentence at hard labor compared to Denise’s death sentence with no appeal. It was clear that this woman could not get beyond the mere fact of the diagnosis. At the instant of hearing a neurologist’s words and knowing my own fate, hours were crammed into the blink of an eye. I saw the rest of my life and played out my fears. I made a decision about how I was going to react. Did Denise have a similar response? I wondered. “Not really,” she answered with no embellishment.
For her, shock shut out thought. Even though the doctor’s information was what Denise was expecting, the words hit with force. “It was like the doctor punched a fist into my gut and all the air came out of my diaphragm.” Denise looked down. “I was, like, gasping for air.”
“And your gut reaction?”
“I was pissed off and angry. When I came out of the building, there were these big plates of glass, and all I wanted to do was punch my fist right through them. I could not get past that anger for a while.” For some of us, it never passes. Working through the white heat, traveling past the moment of rage, takes an acquired skill.
That night, after the awful news was delivered, Denise sat with her roommate, Peggy, who also had worked for Harry. Denise fixed on the final piece of advice the doctor had given her. “Listen. This part is very important,” Denise said, repeating what she had been told. “‘Get rid of stress,’ she had told me. Go and have fun. Enjoy your life. Travel while you can. Be active. Do not sit and dwell on this, or you will go into a depression, which will have a snowball effect and make everything you face only worse.’”
In a state of high emotion, the two women drew up a list of activities and goals Denise was drawn to, adventures beyond her everyday life. They named continents and countries Denise wanted to visit, sights to be seen before her body betrayed her. “It was difficult.” Denise recalled. Difficult and very emotional.
“We were tearful, actually,” Denise slowly recounted. “I had to admit that my life was very boring. All I did was work, work, work, or be with my two kitty-cats, who were the loves of my life. Stained Glass and Crystal Glass were their names.”
Denise got creative. “I always wanted to go a hundred twenty miles per hour in a Mercedes,” she said, chuckling softly.
“Did you do it?”
“Yeah, I did.”
“How did you pull that off?”
“I cannot tell you when or with whom it happened. I am sworn to secrecy. And it was not a Mercedes sports car, it was a Porsche.” For Denise, the prospect of dying was beginning to clarify how she wanted to live. “It made me get off my duff,” she observed. Her life shifted away from caution.
“I decided to do the hardest things first,” she said, “because I saw my body changing.” Denise packed a bag and traveled to Anchorage for the Fur Rondy winter carnival. She journeyed north again to photograph the California and Oregon coastlines. She enrolled in clown school. Then came the kicker: Antarctica.
“I am going on a cruise to Antarctica,” she announced early in our relationship, her excitement palpable. “I have to see the penguins and seals on those icebergs before I die.”
“Are you serious?” I shot back, sounding disapproving, even to myself. My tongue had been quicker than my brain, my knee-jerk judgment as bad as everyone else’s. My instant challenge betrayed the stupid assumption of recklessness I so resent coming my way from others.
I was selling Denise short because she was sick. What a jerk I am, was all I could think. I am the guy who covered a few wars for television news when I could see only a few vague shapes across a street. And I was preaching the virtues of conservative common sense. “Relax,” Denise had said softly. “It will be great falling off an iceberg.”
My footing recovered, I tried again. “Why exactly are you doing this, Denise?” I asked more reasonably. “This seems as if it will be a very arduous trip.” Denise inhaled deeply. “I have to see those penguins and seals with my own eyes. I want to stand on an ice floe and watch the sunset.” I do not expect to die of MS. For Denise, sunset must take on new meaning. “Richard, I need to do this.”
In an article for the ALS Society Journal, Denise identified the emotional fuel that propelled her to the end of the earth. “As my ALS progresses, my left hand and leg are becoming weaker. That has made me more determined than ever. I have to pursue my dreams.”
She sold her condo—the stairs were increasingly hard to maneuver, and it was the right time for a change—and used the proceeds to finance her journey. I rode around L.A. with Denise a month before she was to head south while she picked up warm clothes and boots for the weeks she would be spending above deck and below zero.
Anticipation ran high. “It is the whole thought of being down there and doing the trip with my ALS,” she exclaimed in a breathy voice. “If I did not have ALS, I would not be going there. There would have been no time or incentive to live the way you are supposed to,” she explained at a busy intersection. “I would be too busy living a life I did not care about. I have changed. I’m doing things I would never have done.”
The trip was rough. Denise flew to Miami and caught another plane to Ushuaia, Argentina. She traveled by car to the shores of the Drake Passage, where the Pacific and Atlantic oceans merge. The ship, Explorer 2, was waiting. Safe in her cabin, Denise wept with relief and excitement. Once under sail, the seas were harrowing. At one point, twenty-five-foot swells and seventy-mile-an-hour winds kept Denise in her bed for almost a day.
The continent at the bottom of the earth became a metaphor for Denise’s struggle. The landscape is overwhelming, wide, and bleak. The trek across is lonely and dangerous. Antarctica accounts for 10 percent of the earth’s surface and contains 90 percent of its ice. This would prove a hostile venue for proving a point.
But the strain of the long journey was worth it. “Seeing the tabular icebergs, magnificent Antarctica sunsets, were breathtaking,” she e-mailed. At four o’clock one morning, they boarded Zodiac boats to go ashore. “I was walking on the beach with penguins by my side. I was crying because it was overwhelming and I still could not believe I was there.” The mere fact of the trip meant as much to her as the splendor.
Denise understood that she could not conquer ALS, so she traded that impossible challenge for a rigorous task she could complete. As a sojourner below the equator, she survived a strenuous challenge and could claim victory over that. The experience was part exploration, part mind game.
“It took a disease to open my eyes and force me to muster the courage to do something.” Denise chuckled softly. “I did not know I had it in me.”
“Any regrets?”
“No way,” Denise snapped. “Not a day goes by when I do not think of Antarctica and what I did.”
“And you learned from the trip?”
“Yeah. Every day, live your life and live your dreams.”
IF THIS WERE a movie, we would shoot a slow fade on Denise, standing taller than she can, triumphant and happy on the ice floes. She would appear in the shadow of the craggy, wild mountains of Antarctica. Real life tells a more prosaic story. It is a much smaller life filled with fears and daily frustrations.
ALS makes swallowing difficult, and Denise has had to overhaul her eating habits. “I have to think through every meal,” she said in a weary voice. It had become a time-consuming routine, a “pain in the ass,” according to her. Dairy and spicy sauces are banned; they could gag and choke her. Steak, vegetables, and fruits have to be cut up in small pieces to avoid the same. Dry and crumbly bread and cheeses are cut out altogether. Denise drinks water at room temperature with no ice. Cold constricts the throat. The H2O is sipped through a straw.
“Can you eat anything halfway edible and interesting?”
“I had French toast just this morning,” she told me with no hint of humor. Apparently, food is no laughing matter. “I drenched it in syrup so I could just swallow it.”
“Any other recipes?”
“Hamburgers are always good.” Pause. “But it is always with a lot of ketchup and a glass of water right there. Look,” she said suddenly. “I do what is needed to get the stuff down.”
What Denise chooses to eat is but the beginning. “The way I sleep in bed. If I am lying flat, I choke. It is hard to get in and out of bed. It is getting harder.” It takes constant focus just to get through another day. “The way I get dressed in the morning is a contest with myself,” she said, describing her contortions. “Standing on one leg to put on a sock, those days are over. Even putting on underwear, I have to sit down. You have to think of a way to get your foot in.”
The exasperation in her voice as she described the daily grind was clear. “Everything we all take for granted has been taken away. Now I live a different life.” Every minute of this woman’s day is centered on ALS. It is the only game in town. “Oh, yes,” came quick corroboration. “Walking down the street and not falling is big. I get tired of constantly keeping ALS in the front of my mind. But you’ve got to. All I think about is figuring out ways to keep surviving, just continuing to live.”
Just the thought of this makes me crave a stiff drink. “Oh, and I miss my pinot grigio like you cannot believe,” Denise groaned, laughing and choking slightly at the same time. Wine makes her gag, but for a treat on a New Year’s Eve she allowed herself a small glass diluted so much that it tasted like grape-flavored water. “It’s almost not worth it,” she said glumly.
Denise brings a level of discipline to her struggle that has evaded me in mine. I miss by a mile. MS, too, makes swallowing difficult, but I have no patience for sensible, healthful calculations. My internist once told me he figured that sooner or later I would choke to death because I was not smart enough to chew my food thoroughly or slow down.
Denise knows and does precisely what is good for her. I tend to do the opposite, defying common sense, jaywalking with seriously impaired vision across busy New York intersections.
Immaturity beckoning? Perhaps. I think of those acts as choices, a stubborn refusal to make even small concessions to a disease I do not respect. Denise has to respect ALS; the illness is just too dangerous to defy. Defiance may be a luxury belonging to those who believe they will survive.
As her body weakened, Denise resorted first to using a cane, then a walker. The stick had a festive air with its pastel flowers, but the walker was a grim emblem of disintegration. Denise had to give up the two-story rented house she moved into after she sold her condo because she could no longer navigate the stairs. She moved to a modest ranch house on a quiet street just off the Ventura freeway. Her van sits high enough from the pavement so that getting in and out is a struggle. Her own wheels, parked outside that house, are her last hope for independence.
People park under Denise’s skin with relative ease. Assumption and attitude make her crazy, and she gets plenty of both. “I get very frustrated with the world,” she announced one day. “People will not take the time to understand and be compassionate. As soon as I open my mouth at a store or anywhere, people turn around and look at me like, ‘Are you mentally retarded?’ ‘Are you deaf and trying to speak?’”
Denise is most self-conscious about the slurred speech that is characteristic of bulbar ALS. She has learned what my less-pronounced slur from MS taught me long ago: people jump to conclusions. “Are you drunk?” becomes the common query. “Of course, I do not drink,” Denise complained. “People do not know that, and they assume the worst.” She paused. “You know, it is so hard not to flip people off.” Welcome to a world of ignorance. “People also assume I had a stroke, especially because of the cane.” She laughed ruefully. “I wish it was just a stroke.”
Denise was getting worked up, pausing only for the laborious process of breathing. “When you’re out, people tend to gravitate to the one who is not ill and ignore the sick person. This is how people respond to me, even though I always will be mentally intact.”
“How does that make you feel?” I asked.
“I guess I am used to it.” Or not.
“I think people are stupid and condescending,” I said. “What can they be thinking?”
“That you are not normal, so get out of here.” Denise believed judgment was instant and harsh. “You are not normal, so I do not need to communicate with you. You are not worthy of my time.”
“People say that?”
“No. I see their faces. And they turn away.”
Denise has found perspective over the years. “I think, Do I want them to remember me because I flip them off? No. So what I say loudly is this: ‘My speech is slow. I have Lou Gehrig’s disease, ALS. My mind is fine. I am not mentally retarded. In fact, I am probably smarter than you.’”
Denise worked up a head of steam. “When they have been really rude, I say, ‘Please be patient. I know what I’m going to say. I just cannot speak it. So let me know if you do not understand.’ I say this all the time.”
“That’s polite.”
“I can be polite.” Pause. “Sometimes.”
The communication gap is daunting. It reared its head when Denise came to visit in New York. Canceled planes, hours of delays, and a long flight eventually dumped an exhausted Denise at JFK airport late one stormy night. The terminal was nearly empty and when she arranged for her car service, the cranky airline employees certainly did not make her feel welcome to New York.
Her surly driver got lost. Denise’s tiredness had long passed her anger. Always one step ahead, she pulled out handwritten notes she had prepared during the flight and gave them to the driver. The small pieces of paper named the Times Square hotel where she was staying and described just what her problem was.
“Can’t speak,” the note read. “I have ALS, Lou Gehrig’s disease.” The driver did not want to deal with her. “He just looked away.”
“Weren’t you angry?”
She sighed loudly. “Yeah, but what is the point?”
I said nothing.
Denise cannot accept that people can act horribly. She expects better and cannot shrug off the disappointment. She takes ugly encounters personally, as if insult and injury are fired only at her.
“One night, I called a very large electronics store to find out the cost of something and their return policy. I called six times and kept getting the runaround on their recording machine.” She was getting upset just telling this story. “Finally I got Edmund.” Her lip quivered as she continued. “Edmund went to ask someone, and he left the phone open, meaning he did not put it on hold. He said to the other salesperson, ‘I have this old lady who is drunk on the phone. She is screaming at me and trying to find out our return policy.’ Then I said, ‘Okay, Edmund. Next time you want to bad-mouth a customer, you need to put the phone on hold. And furthermore, I have a fatal disease, and it is called ALS, Lou Gehrig’s disease. It has affected my speech. But believe me, my brain is better than yours.’”
Denise relishes the small victory. “When I have to deal with the public, my anger comes out because they are ignorant. They do not know what I’m going through.”
I hate to say this, Denise, but welcome to the real world. No one wants to know.
People with busy lives do not have time to know and do not want to care. Folks out there do not feel comfortable getting involved with people who are sick. They will write checks to charities and put money in the basket at church. That is impersonal giving, sympathy from a distance. It keeps consciences as well as hands clean and sickness far away.
Those who suffer sickness learn to put on a brave front. Sometimes this has less to do with the steel of a strong spine than the desire to avoid dealing with the subject at all. Why bother? People do not want to know, anyway.
The most insincere question in the language has become, “How are you?” In my own life, I have become inured to it. People really do not want to know and inquire under the assumption that no one will be rude enough to actually answer the question honestly. I ignore the façade of concern.
Screw the positive attitude, anyway. Give me anger and frustration anytime. Those are honest emotions. We are taught that they are unhealthy barriers to acceptance and peace. I do not think so, because acceptance is poison and peace comes only in a permanent, horizontal position. I wanted to talk about anger, and Denise did not need to be pressed.
“Yeah, and I am pissed off as hell that I have ALS and have to deal with it,” Denise allowed. “And then I think, what is getting angry going to do for me? Nothing.”
“Isn’t there something to be said for releasing steam?”
“Yeah, but what can I do about having ALS? Nothing. Then why be angry? You’d better accept it.”
“You cannot be serious. Does that work?” I asked.
“No,” Denise half-laughed, suggesting that nothing about this was funny.
There is no silver bullet. “When this happened,” she said. “I was given a phrase: DABDA.” The acronym for Dr. Elisabeth Kübler-Ross’s seminal emotional stages of dying: Denial. Anger. Bargaining. Depression. Acceptance.
“I do not mean to quarrel with Dr. Kübler-Ross,” I said, “but I do not buy her roadmap for coping. Her order of emotions is off, and I doubt that each flows automatically into the next.”
I have dabbled in denial on my journey and have hit the brakes after anger. I can slow or even stop that anger after skidding, but I see nobody to bargain with. I have no time for depression, have avoided acceptance, which is tantamount to surrender. This leaves me to travel my own path, and I can live with that.
Did Denise find DABDA any more helpful than I had? “No,” she answered quickly. Then her words softened. “In the beginning I was mad at everyone and everything. Then it evolved into being angry that I had to be the one to get ALS.” She had ratcheted up just being mad. “Then I was back to ‘Okay, I’ve had it.’”
“In other words, you were all over the map.”
“Right.”
Jerry Goldman, a Toronto newsman writing about his own reactions to having ALS, argued that Kübler-Ross missed a stage. “Actually, it’s the first one you confront,” he wrote on his website. “Shock. Bang! You have a disease and you’re going to die. What! No, can’t be. How did this happen? There must be a mistake. Holy crap, I’m gonna die? This is insane. I can’t die. I don’t want to die. And so on. I’M GONNA DIE.”
“Oh yeah,” Denise squealed over the phone when I read her Goldman’s Internet outburst. “For me it was like that.” She did not burn through the shock. “It comes back as a repeating bad dream. You do not forget the feeling. I still don’t. Some days, on my down days, the shock does not go away.”
“Will it ever?”
“I doubt it.”
I asked her if she thought she would ever make peace with her fate.
“Probably not. I got cheated,” she answered.
Does she even want to find peace?
“Why? What is the point?” she demanded. “Should I have it and be happy? Yeah, right.”
I rest my case. Making peace with serious or hopeless illness should be reserved for priests and patients on bad TV shows. Acceptance is not a real-world concept. For me, a semi-vacant look is the best response to queries about making peace with illness. To make peace with an illness becomes appeasement. I need frustration and anger to keep me going. The bitter flailing at what I can no longer do with my body becomes an emotionally safer target than the illness itself.
I called Denise to ask if she understood what I meant by anger being converted to fuel for living and was taken aback by how subdued she seemed. “I fell last night,” she told me. “I hurt my left side, my hip and butt,” adding, “I am losing my balance. I have to go slower and think about what I am doing.”
“Does that piss you off?” I asked.
“Yeah.” She sighed. “What can I do? This is not me. It isn’t. If you knew me before I was sick—this is not me.”
“How does it make you feel?”
“It makes me angry.” She paused. “I will never be normal again.”
“And where does the anger fit in?” I prodded.
“Anger keeps me going and helps me and pushes me to prove to myself that I can still do everything I could, even though I cannot.” I could hear her begin to weep softly. “I did not cry too much until I started talking to you.”
Great.
I worry that this book is a cruel exercise because the mirror is held so close.
“I will never be able to run up and down the stairs again. Ever.”
You and me both.
“Do you miss running?” she asked.
“I do,” I told her. “A lot.”
“You’ve had MS for so long.” Denise was breathy. “This is new to me. You are used to it.”
“Not really,” I answered. And no, I said in my head, you never get used to it.
Running down the stairs is just a memory, I told Denise, realizing that the day before, I had stared at people going up and down stairs and wondered how they kept their balance without leaning on a rail or using a cane.
“When I fell, I did it on my cane,” Denise offered. “It hurt.”
“I find that what hurts is not being able even to imagine negotiating stairs without the cane.”
Here is a little-known true fact. Sickness hurts, and not just emotionally. Everyday injuries, the contusions and cuts, sprains and scrapes, become the regular price for surviving another day. Legs are weak, balance gone. Mishaps are steady. Bruising the body injures the spirit. Get pissed at the symptoms and, in your head, keep a safe distance from the disease.
Anger becomes utilitarian. Letting off steam before there is an explosion allows us to continue the struggle, to focus emotional energy on how difficult our lives have become, not when they will end. The very fact of a disease that kills may be impossible to absorb, but bathing in mortality is no way to cleanse a troubled mind.
DENISE AND I were driving along a narrow road, winding our way through an arid canyon connecting Malibu with the hectic, wildly growing towns east of the mountains. I silently noted that Denise drove decisively, in firm control of her white van, even as her control over the rest of her life was ebbing.
“I do not want to talk about my family,” she announced for the umpteenth time.
“Whatever,” I said, as if this were the first time I had heard the remark.
“I just don’t,” she followed crisply, trying to slam a closed door. “It would upset them.”
“They upset you,” I responded. Denise lost interest in the conversation.
I did not get it. Every family has its baggage, but flesh and blood are everything. The DNA is there. Parents and siblings should offer solace and support. Since family seemed an explosive issue with Denise, I began with religion, the safer subject. “I am not an atheist,” she said, “but religion is not a big part of my life.” She shrugged as she drove. “I just do not feel it. I can be spiritually moved but not because of any religion.”
Organized religion and spirituality can have little to do with each other. “When I say, ‘Oh, my God,’ who knows what god I am talking about?” She said, laughing. Denise is a Jew, though hardly observant. Occasionally, she attends a nondenominational church with a spiritual emphasis. I think in some circles that is known as Religion Lite.
God may be missing in action on Denise’s personal battleground, and so, it seems, are her parents and siblings. There had been no sense in our conversations on coping of her family having a meaningful role in her drama. I had heard nothing to suggest that her family even stands on the stage. “I do not want you to write about that,” she told me repeatedly. Fine, I would say back—that is, until finally I realized her family did play an important role.
Denise’s disappointment, even anger, toward her family was neither veiled nor vague. The familial response to her illness, she said outright, was consistently cold and disengaged. They did not seem to care to know about her disease or understand her ordeal. Denise’s observations about family came at awkward times, when we were arriving somewhere, with little opportunity for follow-up. Who had pushed whom away was not clear.
Geographic distance seemed hardly the issue. Her parents, Selma and Al, live in a retirement village in the California desert near Palm Springs, a few hours by car from Denise. Her older sister, Lori, lives with her family near Denise. She also has two brothers, who live in other states, and whom she rarely mentioned. Other families manage greater distances, and always there is the option of moving closer to one another. So why did Denise’s family seem to be missing? “I just want to meet your family,” I kept saying.
Denise had been given permission to take me to an ALS Association training session for spouses and partners of newly diagnosed ALS patients. These meetings usually are private because participants are so vulnerable and their emotions so openly displayed. We sat in the back and tried to blend in.
The session was raw and riveting. The newly inducted caregivers seemed predictably bewildered, deer in the headlights. The caseworker leading the seminar was advising these individuals of the physical horrors they could expect to encounter in their loved ones. This compassionate woman laid out the psychological needs that probably would present themselves in the not-so-distant future.
The scene was sobering. I watched Denise watch the new class of suffering spouses. I wondered what was going through her head as she contemplated these partnerships while facing a future alone. The significance could not have been lost on her. I was more focused on Denise than on the others. Her stone face did not soften.
“For a while, many PALS [People with ALS] will want to be independent and accept no help,” the woman running the seminar gently cautioned the new caregivers. They seemed so nervous. Denise leaned toward me from her chair. “That’s me,” she said in a thick whisper. “No help.” I nodded. I know, I thought to myself, independent until the end.
Denise takes pride in proving herself independent and self-reliant. Fair enough. Doing for ourselves allows us to believe we are ahead of the game. Feeling that we are outpacing the Grim Reaper, despite what we know on another level, can keep us from sinking into despair and withdrawing from people around us.
Denise lives in fear of that inevitable day when cherished independence takes its place as a memory. So do I. But Denise ventures further. She goes out of her way to dispute the notion that she needs any assistance. In one conversation at her home, I suggested she might find a caregiver helpful. The woman bridled. “Why would I need a caregiver right now?” The edge in her voice cut clear.
“Maybe you would not feel so alone,” I offered.
“Why would I feel alone? I have been divorced fifteen years. This is not new.” She sounded very impatient. And defensive. “I am fine,” she announced abruptly.
“And you really don’t feel alone?”
“Why would I feel alone?” she repeated. For a moment, I thought she was going to come across the table at me. “I was alone before the disease happened. A caregiver is a caregiver, not a companion,” she insisted. I nodded and said nothing. “A caregiver you pay to blow your nose and do whatever is necessary,” she went on.
Denise sounded disparaging of such help. “I have hitched myself to friends I want to be around and who understand what I am going through.” She stared at me fiercely. “They know the ups and downs of the disease.” The companionship of friends, Denise claims, is all she needs and all she wants or will accept.
“Might you change your mind about opening the door to another person?” I asked.
“I would think that a man would not want to get attached to me now, knowing that I am going to die. Sooner or later, he would have to take care of me on a daily basis. I do not want that.” Denise had been alone for many years. She knew little else. Her brief marriage and divorce had come years before sickness. She had been involved with someone, but he headed for the hills soon after hearing her diagnosis.
“People who have a spouse often feel worse because they consider themselves to be a burden.” Denise paused and swallowed hard with emotion. “I don’t have that worry. In a way, I feel I am more fortunate. This is my feeling about me. I am not here to make judgment calls about other PALS who are married and have kids. I never had kids, so I would not know what that is like in the first place.”
Denise does not know the emotional fuel that flows from a family. It was not clear if she wanted to know. Knowing leads to feeling, and that may be threatening because it pushes high emotion into your face. Novocain seemed to be the drug of choice for her.
If a bedrock belief in self and future possibilities burns within, it is fed and nurtured by those around us, people we love who love us. That must not be minimized. I know. Meredith and our kids traveled with me, walking across hot coals and through storms of emotional pain with me when cancer came twice. They paid a price and then offered me strength.
You confuse folks, Denise, I thought. You complain about a lack of emotional support but resent it when it is offered. So you drive people away. That was my snapshot of her, pushing others away and wondering why the people so important in her life were not there for her.
After months of insisting that she did not want me to write about her family, Denise turned in her tracks and arranged a dinner with them, an engagement she negotiated without consulting me. She wants to get me off her back, I figured. I suspected she would indulge me and break bread with her relatives, then revert to her former stance.
Denise’s folks had driven in from the desert for a short visit before leaving for a cruise around Australia. They were staying with their other daughter, Lori, and her family. As we walked into the modern, spacious home in Calabasas, I warned Denise to be careful not to knock the chip off her shoulder as we passed through the doorway. She laughed.
The group sat there and eyed one another. The family was polite but reserved. They were sizing me up, sitting with their full weight on their very own Pandora’s box. I made eye contact with each, and they stared back and through me. They had to feel threatened by the very idea of Denise talking about them to a stranger. Denise had told me she does not speak about ALS with her family anymore.
After the hors d’oeuvres disappeared and the small talk trailed off, I turned to Denise’s mother. “Denise tells me you make pot roast by cooking the meat in coffee instead of wine. Do you really do that?” I asked, looking appropriately dubious. Selma, Denise’s mother, had been leaning back in the sofa, as if pulling back from a painful subject. I saw her relax a bit.
“You should try it,” she said enthusiastically, grabbing on to this safe subject. “It is good. You’ll like it.” As we began to talk about Denise and this book, we steered clear of specifics. Others slowly joined the conversation.
The living room, with its high cathedral ceiling, lacked intimacy and warmth, both of which this dialogue badly needed. The tiptoeing seemed loud. Denise tried to bait the others a bit, but no one would bite.
Dinner wound down and the evening warmed. Denise’s parents agreed to address any questions as they came to mind. Al and Selma seemed to believe me when I told them I wanted their takes on Denise and that I would listen. The couple could be reached by e-mail while on the cruise. Communicating electronically would be an interesting way to engage them, I figured, building in distance and retreating from in-your-face intimacy.
“Why didn’t you ask them anything?” Denise demanded the minute we climbed back into her van. “Come on, Denise,” I answered. “This was not the right moment. You did not let me meet these people until now. I was not going to attack them.” Denise had not wanted me digging into family issues. Now she was throwing a shovel at me. “Besides,” I added, “they are leaving tomorrow. Let it be on good terms, and let’s keep the dialogue going.” Denise said nothing.
Actually, I had enjoyed talking with the family, but for parents of a dying woman, they did seem disengaged from their daughter. My sense was that the distance grew out of their feeling pushed away, and that they were mystified by Denise’s alienation from them. At the same time, I did wonder how they could merrily sail away when their younger daughter was so sick. We all are different.
My first e-mail to parts unknown was vague, asking only how the family was dealing with Denise’s sickness. Selma and Al waited a few days. “I am still, I guess, in a state of denial,” Selma’s e-mail started. “It is difficult for a mother to come to grips with something like this and keep thinking that maybe there will be a cure or something to slow down the progression.”
And from Al: “Our acquaintances are shocked and sympathetic upon learning about Denise. Most of our friends always inquire as to how she is getting along and are amazed at her attitude and fortitude in doing all the things she is doing instead of just resigning herself to the inevitable.” I was taken aback. Why are you relaying the feelings of friends instead of your own?
These messages, Al’s in particular, showed little emotion. What Al had to say read like a prepared statement. My concerns were about the family, not about unnamed acquaintances who might not even know Denise. Feelings did not seem to flow easily from this retired attorney or his wife.
When relations in a family are complex to begin with, a serious sickness can up the ante dramatically. Their issues must go way back, I thought.
Denise’s sister, Lori, had worn discomfort on her face during our visit. In the next week, when I was back in New York, my phones messages went unreturned. Instinct said the obvious, that she was avoiding the prospect of painful questions and had no interest in serving up answers. Days went by, and then Lori’s husband, Ron, an attorney outside Los Angeles, called, graciously agreeing to discuss Denise.
Ron, like Denise, had worked for Harry, the attorney who succumbed to ALS. It was Denise who had introduced Ron to Lori. I asked Ron if he believed this family conflict was about more than ALS. “It is dredging up old stuff, is my guess,” he said. “I know that Denise’s folks were pretty strict when they were growing up. Al was a workaholic and not around a lot of the time. Denise has anger about that.” Ron stopped. “And the parents are not the warmest, touchy-feely people around. I could see that they might not give the kind of support she wanted.”
Ron spoke carefully, choosing words slowly and suggesting that the family traveled a two-way street. “Denise is not the warmest person, either. They are cut from the same cloth, all friendly but not necessarily warm. A lot of Selma is in her. They are all very nice people, including Denise, but they are rigid and need to be in control. So Denise comes by it honestly.”
“It is very difficult to approach her if you are perceived to be critical,” Ron continued. “Denise is very defensive. And she asks for nothing. I wonder: What does she want?” For me, this was not a new message, only a different messenger. Denise seemed to want others to reach out to her, I thought once again, so she could push them away.
As Denise and her family issues were swirling in my head, I was surprised to receive an e-mail from a care manager at the ALS Association in California. I had met her sometime before. This health care professional had served as Denise’s caseworker and offered her own experience and take on Denise’s mind-set.
“Maybe Denise translates a relationship as in some way losing some of her independence. She cannot tolerate feeling dependent or reliant on anyone else, including me. Sometimes I feel that she pushes her family away, too.”
Reliance on imperfect people—is there a perfect family?—did not sit well with Denise. She had told me in numerous conversations that her parents were not there for her. Period. They did not care to know anything about ALS and thought only about themselves. Their communications to me said otherwise, but those communications were to me and not messages for her. Actions speak louder than e-mails.
The ALS care manager had it right. Denise cannot bear the prospect of depending on anyone. Allowing illness to send her back under her parents’ wings may take on particular potency given the family’s history. So Denise seems to cut loose the people around her and then bemoan the sad fact that they are not at her side.
In an e-mail to Selma, I asked how Denise’s ALS had changed the family. Her reply: “At the time when Denise learned she had ALS she was going to a therapist who we felt was turning her hostile toward the whole family,” Selma wrote. “Our family has always been close and concerned with one another’s welfare but she resisted any attempts for anyone in the family to get close to her…”
Blaming a therapist for Denise’s disengagement seemed defensive, and yet I could feel pain coming from Selma. “The family nevertheless continued to include Denise to the extent that she would let us,” she continued. “We often wonder if Denise is angry with us that she became the victim of ALS. The thought also occurred that she feels we are genetically responsible. Denise’s older sister, Lori, was diagnosed with lupus four years prior to Denise’s diagnosis. Lori’s reaction has been the opposite of Denise’s and has brought her closer than ever within the family.”
I found myself feeling bad for everyone. These people might well feel they were standing in Denise’s corner. They also knew they were standing on trial. It was getting easier for me to understand why each of them felt as they did.
Denise may want strong support, but on her own terms. Her refusal to recognize the effort and emotion coming from her family is her way of coping. To Selma’s credit, she expressed determination neither to judge Denise nor to give up.
“Although the whole family has been similarly rebuffed by Denise,” Selma continued in her e-mail, “we have continued to do whatever she has permitted us to do to support her. We do not know if her asserted independence is to show us how strong she is or whether she is attempting to lessen the impact of what is inevitable.
“Our family would all like to be included with Denise, but since she chooses otherwise, we are willing to concede and are grateful that she is able to find the satisfaction and fulfillment that she is getting with the people and activities with which she is involved. Our family is resigned to doing what Denise will permit us to do, and are aware that we will be much more of a part of Denise’s life in the hopefully distant future.”
I forwarded Selma’s e-mail to Denise, and the silence screamed. Then one dark morning this screed was waiting quietly on my computer: “N A I V E, N A I V E. First I started to cry out of anger and then I just shook my head and laughed. THEY DON’T GET IT!!! Even at this point. It’s not about excluding them from anything or blame.” Denise went on to enumerate her complaints about how manipulative her parents have long been in her life. She disputed their claims of wanting to be close.
Selma had written this: “Denise has resisted any attempts for anyone in the family to get close to her.” Denise replied, “They DON’T know how to get close. Do you know that NO One has said to me, ‘I’m sorry that you have this. I can’t imagine how you feel.’ They would be shocked as to my answer on this. This is how ‘off’ the charts they are…My parents couldn’t even hold my hand, let alone sit next to me when the doctor read the diagnosis! They are on the sidelines because they wish to be.”
Denise bristled as she told me in a follow-up phone call that her father, along with her siblings and in-laws, had adopted a paternalistic attitude toward her. “My brother-in-law Ron, brother Steve and Dad have powwows all the time about me—what is best for me, and then they pressure me to do what is best. Why aren’t I INCLUDED in this powwow? Don’t I have a say as to WHAT IS BEST for Denise?”
Denise had not displayed such anger before. “They—all of them—are NEVER going to change. It’s still stupid Denise who never amounted to anything.”
Self-esteem is not Denise’s strong suit to begin with, and the pain of feeling like a second-class citizen in her own family precedes her illness. For her, as for many among us, illness has inflated to new proportions all that already existed.
The white heat of disease was melting the family glue, with pure anger the byproduct. These are good people, which should make anyone wonder how common this kind of conflict is. Fighting in the family feels safer than taking on a dread disease. Fear and helplessness combine explosively. Old issues detonate at the most vulnerable moment. Chronic illness puts families under siege.
For me, this was a variation on a theme. I had pulled away from those closest to me when colon cancer piled on multiple sclerosis, and an unhealthy dose of self-absorption got the best of me. Maybe family becomes a safe house for pent-up rage.
The irony is that family feuds, whatever their makeup, are almost beside the point; fighting sickness remains a solitary battle. No matter how loving a family, however attentive a friend, in the end, we die alone, and in sickness, we live alone. No one can fully understand our ordeals. The challenges to each of us become highly personal. Cumulative weariness with the struggle whispers, and only we hear. No wonder our families feel threatened.
For the sick to complain bitterly to our families would be to drive away those dearest to us. So we shrink back and keep our silence. We see the burden we have become, though, often, no such heavy weight exists.
DENISE PULLED INTO the driveway and hit the automatic door opener at her ranch house off the Ventura freeway. It is a modest structure, a little drab on the exterior, but what the place lacks in charm is more than compensated for by convenience. Denise drove the van into her garage, within feet of an inside door leading directly into the kitchen.
The sparsely furnished interior make the place look like a way station. I had the strong impression that Denise had never moved in. She seemed to be camping out among computers and cartons. There was no sense of place, nor any sign of personal investment. There were no plants, no pets, and a refrigerator stocked with only bare essentials. The place reflected a one-day-at-a-time mentality. This is a temporary stop, I thought.
The house did seem a safe haven, though, and once inside, with the doors locked, Denise did seem secure. With her, I knew, there is no such thing. Weeks earlier, I had found an early-morning e-mail from her with an alarming, cryptic plea in the subject heading: “I fell. Call me.” The rest of the e-mail was blank. I called Denise later that morning. She was upset, badly bruised, and rattled from the tumble.
Now, on her turf, she showed me the spot next to the garage where she had gone down hard. She had been taking out the garbage, carrying more than she could handle. The incident pointed up what I had already learned in my life. Test the illusion of normalcy, and watch out. Anything can happen, anytime, anyplace. More to the point, Denise had been trying to do too much at one time and without backup.
“You are a loner, aren’t you?” I asked.
“I spend about ninety per cent of my time by myself.”
“And before you got sick?”
“Same.” She was not about to change.
“What is wrong with holding a hand?” I wondered. “And wouldn’t it have been easier with a family?”
“A spouse and kids?” she almost demanded. “No. I am alone in dealing with this.” She paused to swallow. “And I am grateful. I do not feel guilty, avoiding compromising a spouse or children’s lives by dealing with this and making them go through it.” Another pause. “Because it is hell,” she said. “It is hell.”
She went on: “I cry when I see families of PALS because I know what they are going through.” Denise had thought the issue through and was not making excuses. “I became very close with three girlfriends, Cathy, Shelley, and Cheryl, whose husbands, Andy, Ernie, and Jeff had ALS,” she told me with emotion. “The families all had either young kids or older ones.” Denise recounted their ordeals. “My girlfriends did not sleep at night for over a year because they were taking care of their husbands.”
The men died within nine months of each other. Denise believes that her friends with ALS were the lucky ones. “I am happy for them, that they are relieved of the confinement in that cocoon of the body, and the inner soul is out and free. But their families have suffered so much. And for them, still it is not over.”
“ALS is in a category by itself, isn’t it?” I asked. Denise practically whispered the word “yes.” There is a culture of death with this disease. “Yes, because there are no expectations of a long life,” she answered quickly. “There is only the certainty of death. ALS offers nothing except the knowledge that you better live your dreams pretty quickly.”
By now in the conversation my own self-absorption was kicking in. I was trying to determine for myself whether I, under any circumstances, could stop thinking about that last hideous state, the loss of all control and certain death. How does a person keep going?
For those of us with our own different diseases, the scenario strikes the classic chord, that someone always has it worse than you. The question—“How does she just go on?”—rumbled around my head in the middle of the night, and I got out of bed to e-mail her.
“It is not easy,” her e-mailed answer began. “I wake up thinking ‘Am I going to fall today? Is there going to be a physical change for the worse?’ Then I think about what fun things there are for me to do now and in the future. This gives me enjoyment, a purpose, and keeps my mind working. It helps keep the depression at a lower level.”
“Do you ever think about your end,” I asked her in a subsequent phone call. There was a silence, then a soft moan. “Yeah. I sometimes go there. The thought of dying from ALS is not frightening.”
“It’s not?”
“No. How much will I be able to endure? That is the question.” And by the time you answer that, I thought, it will be too late to do anything about it. You will be paralyzed and a prisoner of a moribund body.
“You never get over having the disease,” Denise said softly. “This will let up the day I am free from ALS, and that will be when I am dead.” We were sitting outdoors in the sunshine at an overpriced California fruit and smoothie stand. Denise’s remark came without self-pity or any other agenda. “I have seen too many friends progress. I know what is ahead of me.”
“Five years in, you have to be a different person.”
“You bet.”
“Are you a better person?”
“I am far more compassionate, far more loving and happier, even though I’ve been told, ‘You are going to die and there is nothing we can do.’” ALS had opened up a positive piece of this woman. How ironic to be reborn and die from the same disease.
Identity and illness have fused. ALS has given life a meaning Denise could not find another way. It is, she says, a gift. “If I did not have ALS, I never would have met the most wonderful people in my life. I have friends who are so good. They keep me going.”
She has replaced family, flesh and blood, with the ALS community, those with the misfortune to be like her, along with their families and friends. They may have but one thing in common, but these people have become boon travel companions, generous and helpful. For Denise, ever independent, it has been a revelation.
When she moved to the Ventura place, she needed help. “It was the first time in my life I asked,” she said. “And to have twenty-five or thirty people, almost all from the ALS community, come and help me, well, I did not know that many people who could be my friends before I was diagnosed,” she said in a wobbly voice but with a look of resolve on her face. “So I am blessed to have these people in my life.”
For all her widening circle, Denise remains wary. When she takes from friends, occasionally leaning harder than she can tolerate, she pushes back, retreating into herself. The risks are too great. She is still a loner.
DENISE SEEMED MORE open than usual one sunny day in California. “I was an unhappy person before I was diagnosed with ALS. I had no life. There was no fun. No traveling. Just work.” And now? “I have a disease and I am living a new life. I’ve been given a chance for a second life out of that life.”
What she found was the formula for dying, which happens to be the same as a plan for living. “I say, ‘You need to appreciate every day. Do something for you. Light a candle. Go outside. Smell the fresh air.’” She looked radiant in her up moments.
“I am living a life I did not live for forty-eight years,” she went on. “Now I am cramming it in. I am a new me.” One of the linchpins of her new life is advocacy work. She speaks to high school classes and has made a video that was delivered to elected officials in Washington. “I have found my purpose in life. Getting the word out helps me through each day.”
When Denise got her diagnosis in 2001, she had immediately focused on trips she wanted to take, experiences she needed to have. Then she wilted, falling into a deep depression. “I got into these funks where I locked myself in my house for four or five days,” she recalled.
For eight months, she wallowed and wailed and demanded to know, “Why me?” “I was incredibly depressed and did not know how to deal with my feelings and how to go forward.” She was medicated that first year. “You have to be,” she said. And she spent hours with a therapist. Finally, the therapist got through. “‘What happened to your goals, who you wanted to be?’” Denise remembered her demanding.
At that moment an advocate’s identity was born. “I got very active with the ALS Association, and it turned my life around, my meeting other PALS and helping them with their lives.” She finally decided to “accept and move on.”
“Are you really learning to accept?”
“People fight accepting ALS, but as years go on, we begin learning to accept. What good is fighting the inevitable? That does not clear a path to the next step of your life.”
“Which is?”
“Dying.”
The struggle for any ALS patent is to stay up. Down was where Denise found herself on a December Saturday, sitting on a suitcase at JFK watching cars scream by. She was cooling her heals in the freezing temperature, waiting for Meredith and me, and not at all happy about having to sit. She was arriving in snowy New York only weeks before Christmas.
Denise was good company but could not allow herself to be simply a guest. The role did not suit her. She insisted on cooking and cleaning, as if those were a payback or there were a point to be made. And for her, there was. These small issues were all about control.
A cold wind blew, and a patchwork of drifts decorated our property during Denise’s last days with us. On the final day, a blizzard threatened. I walked out of our bedroom to find a bulging suitcase in the hall by the guest room. I could hear Denise fussing.
She had decided to abandon ship a day early, hoping to avoid the snow. There had been no collaboration, no discussion, not a mention of switching gears. The woman was up and ready to roll. Her airline ticket had already been adjusted in the predawn hours.
“Please help Denise with her suitcases,” I yelled to the boys as they were grabbing their own backpacks and books.
“No,” Denise’s voice rang out sharply through the house. “No,” she repeated. “I can carry my own things.”
“I am sure you can,” I said to her, “but the boys are big and strong, and it will be good for them.” Denise simply ignored me as she brushed by. I stared silently at her back.
Later, in an e-mail, she elaborated on her need to keep up her appearance and, of course, control: “My pride and image are in the work I do now or did then. How I look is important to me. That is control. Being organized and trying to make it perfect through my eyes, that is me. But I’ve noticed with the disease progressing that the more independence and control I lose with my body, I now see myself trying to control everything else in my life. I feel losing independence and accelerating control go hand-in-hand.”
Bingo—though a difficult admission. Low self-esteem had long since created the control issue, for, as she said, when she was in charge, she felt like somebody. Then throw in ALS. “When you are dealt a blow like this, you are out of control. You do not have control of your body. So I control other things that I know I can control, just anything. I always take the lead, in anything I do. Have you noticed?”
I nodded and kept my mouth shut. “It just happens. I try not to take over. I know now what I’m doing, so I try not to do it.” Whatever Denise’s pattern of manufacturing control, ALS had upped the stakes in her struggle for ownership of anyone’s most prized possession: self.
“Something or someone else is going to have control over my body. It will not be me anymore. I know that, and it is scary. As I keep saying, how far do I want to go with this disease? How long will I let someone take care of me?” A page was turning. Circling the subject was as close as I had gotten to the idea of suicide. Denise’s face became granite whenever this topic reared up.
“We need to talk about that, sooner or later,” I said to Denise. “Your hints take us only so far. What is your worst-case scenario about losing control?”
“That I will not be able to care for myself,” she answered, “to take a shower by myself. I will not be able to blow my own nose. Scratch an itch. Those are the ultimate control issues,” she said forcefully, “because if I lose control and someone else has to do it, I have to ask for everything.”
She could not live with that. “No,” she quickly responded. “Then caretakers are in control of my body. I don’t want caretakers to think they know what’s best for me without asking me.”
“You said you will be mentally intact,” I pointed out. “You also will be physically dependent. Exactly where does that leave you?”
“Everything comes down to how much I can endure.”
“You have said that more than once. Please take me further in your thinking.”
“I just feel people have the right to choose what they want to do with their lives.” She paused. “Where they go and when they leave are very personal decisions.”
“In Mitch Albom’s Tuesdays with Morrie, physical helplessness overtook Morrie. He suffered a total loss of privacy, lost control of his body, had a nurse wiping his butt,” I said. “Isn’t that where you are headed?”
“Physically, yeah. Do I want that kind of life? It’s a decision I will face.” She hung back, not about to sign on any dotted line. “Do I want to prolong my life? I have a choice in whether or not I want to have a feeding tube, if I want to be on oxygen, if I want a ventilator. Those are the main ways of living longer with ALS.”
“And?”
Denise just stared into my eyes.
As the body fails, control and the last word still belong to the patient. Maintaining that power becomes the lingering uncertainty. “Absolutely.” Denise’s tone was urgent.
“Can you assume that nobody will step in and overrule you?”
“There are documents I will be drawing up that will say what I want and what I don’t.”
A year passed before we returned to the topic. During a phone call, I raised the subject again. What gives?
“The document is almost finished. It spells out what I want. It is called an Advanced Directive.” The papers detailed what, if any, heroic measures were acceptable. “Right. Everyone should have one. Do you?” Don’t change the subject, Denise.
The document, of course, said nothing about Denise taking matters into her own hands. “Right,” she said softly. “Look, I have that right. I am over eighteen. It is my body, not theirs. It is not what they want. It’s what I want. Ending your life your own way is your business.” Denise did not budge or reveal herself.
“You keep referring to ‘they.’ Who would ‘they’ be?”
Her response backed off the reference to “they.” “I was bitter and very angry with my family,” she wrote by way of explanation. “I’ve now accepted them for what they are and cannot change them.”
I doubted her new placid attitude toward her family. Her relationship with her parents and siblings had gnawed at her for so long. But Denise seemed to be done with the subject.
The family might be invited in as players when things got bad, I suggested. “Do they know your wishes?”
“No. No one does.”
“Would your family try to overrule you?”
“I don’t know. I never asked them.” The inevitabilities are clear. “They know that I’m going to die from this.” She paused. “And I think they know what is going to happen between now and then.”
Denise owed me nothing, including private information. There was no reason to assume she would share her plan. “Have you thought about taking your own life?” I asked directly. The question was blunt, though not out of line. We had discussed options without explicitly defining them.
“Have I considered suicide? Oh yes, in the beginning,” she said, looking at me.
“Where do you come down on it these days?”
She paused. “I decided, no.”
“No, you have not decided?”
“No, I am not going to do it. I have way too much advocacy work to do.” I knew this answer was today’s special. “We will see,” she said. By now, this line of conversation had stretched across the continent, not to mention the years, during visits, on the phone and in e-mails. I assume you would need to plan how to do anything yourself or get someone to help. We sat in silence, looking at each other. “I agree.” That was it.
“That is all you are going to say about it, isn’t it?”
Denise laughed. “I have a folder with all kinds of information and I am not ready to open that door.”
“I am not trying to put ideas in your head,” I told her. “I am only asking if that ultimate act is what you have been alluding to in our many conversations.”
“It is a thought every PALS has,” she allowed. “I mean, who the hell wants to go down the ALS road?”
“You have the power to do what you want.”
“Yes,” she said quickly. “And hurrah for Oregon,” she shouted, an obvious reference to the only state to legalize physician-assisted suicide.
ALS complicates an already complicated subject. “If communication is not available, and there is only silence, no one can know what you want or what you may wish you had done,” Denise added. Passing the point of no return would give me nightmares. “In the very last stages of ALS, you are in lockdown,” she pointed out again. “Then you need a plan.” But she insisted that, so far, there was no exit strategy.
“This will be like getting my walker,” she said. “I hated the walker idea. Hated it.” She was having trouble getting the words out. “Then the time came. I decided to get it.” And? “Now, it is good. I am taking it as it comes.”
“Ending it all,” I said, “of course, is different.”
“Yes.”
In show business, timing is everything. The risk of Denise finding herself incapable of action hangs over her. “There always are ways. If it is past that point, there are things I can do.” She paused. “I am not going to get into it in any detail.”
ON A WARM late autumn Saturday afternoon a few years ago, Denise and I snaked through California mountain passes, heading home from a drive along the ocean. The wind was up. The Pacific had been rough. The terrain inland was sharp and craggy. A feeling of proximity to the elements that I do not get in the middle of New York City was not lost on me.
Denise said suddenly, “I want to show you one more thing.”
“Go for it,” I answered.
We drove a while longer, listening to the wind and taking in the terrain. “It is the pet cemetery where my kitties are buried,” she offered. “The place is so peaceful and very beautiful,” she added. “I feel so calm when I am there.”
Denise had talked repeatedly about her beloved pets in our many conversations. In fact, her cats seemed to be the only living things she held dear. “I have never loved anything more in my life,” she declared more than once. I found it difficult to relate to her intensity of connection. I had asked if the love she received from her animals was greater than what she had felt from any person in her life. “Absolutely!!!” came an emphatic reply.
In truth, her pets were her family. “The kitties were my everything. I never had kids, so the cats were my children. There was not anything I would not do for them to make them happy and comfortable.”
The deaths of those animals, it seemed, would foreshadow her own. “Crystal died just six days before my diagnosis. Worst week in my entire life, experiencing the death of something I’ve loved so much and then hearing of my diagnosis.”
Denise took out a tissue. “I thought, immediately, if I die before Stained, who would take such good care of her? Part of me died that week. Stained felt my pain and was there with her comforting ways. I was closer to her than ever. She lived another two and a half years, and I was home with her. I knew she would die soon, so I cherished every day I was with her.”
“Did Stained teach you anything about living or dying?” I asked. I could hear a soft sound and turned, realizing she was weeping. “Denise, are you okay?” Again, nothing. “I will e-mail you later,” she said in a tiny, halting voice.
“Okay,” the e-mail would read when I was back in New York. “I have stopped crying. My cats comforted me in ways humans could not. Call me back. I am having a tough time answering that question.” I waited and called. “I am sorry,” she said. “I was thinking about everything. My kitties taught me the power of love. That’s all.”
She could not bear to cremate the cats when the time came, instead burying each in a tiny casket. As we sat in that pet cemetery on that peaceful afternoon, our conversation took a predictable turn. Denise turned to me and announced out of nowhere that after she died, she intended to be cremated.
“Where do you want your ashes to go?” I asked, expecting her to talk about her spot high above the Pacific. She sat in silence and turned the car back on.
“Pacific Palisades?” I guessed.
She did not move, then looked up one last time, swinging around to see her kitties’ graves. For a moment, the tiny woman seemed focused. I stared into her eyes. Perhaps we were home. Denise said nothing. Then we drove away.