The first time I went to Movie Night, I was nervous. Also squeam-ish. For months, my friends in Charlotte County, Va., had been urging me to join them on a Friday night at Margy Watkins's house to watch a movie. But I knew that even in this cinema-deprived county, Movie Night wasn't just about catching a new flick.
The problem is, Margy has amyotrophic lateral sclerosis -- ALS, known as Lou Gehrig's disease. The last time I'd seen her, she could still move her leg to press a button on her electric-powered wheelchair, and could speak enough to spell out a joke, letter by letter, until I got it. In the year since, I'd gotten regular updates on her declining condition from our mutual friends but had shied away from visiting myself, wary of trying to talk with someone who has lost her power of speech.
I imagined that on Movie Night everyone would stand around awkwardly, wearing the heightened, over-animated expressions of people trying to avoid looking at the person in the wheelchair, who might be, well, unattractive. The Margy I had only briefly met a few years earlier was a vibrant, active, opinionated woman of about 50. I was not among her inner circle of old friends: some were devastated at her diagnosis but gathered around to help and support; others could not bear to see her immobile and silent and stayed away.
But Movie Night had become an important weekly ritual for my good friends, particularly Ann Charlton and Sharon Reilly, and I wanted to know why. I've been a part-time resident of Charlotte County in south-central Virginia for nearly 25 years, long enough to know and be known, and Margy was becoming a legend. Ann and Sharon, who are related by marriage, are very different, and yet both spoke intensely of how Margy amazed them with her determination to enjoy life when fate and medicine had pretty much consigned her to the back bench.
As I pulled into the driveway of her small ranch house in Charlotte Court House (population 404, give or take), I was relieved to recognize some of the other cars. There was Eve Bader's van, and Sharon's Subaru, Ann's Toyota and Liz Walker's Chevy SUV.
Through the side door (nobody uses front doors around here) I surveyed the scene for a moment. Women were working in the kitchen, opening plastic containers of food they'd brought, putting out a stack of red and blue plastic plates, tossing a salad. Others sat at the table, glasses of wine in hand, mouths in motion. Another woman, unknown to me, sat nearby reading, looking up every few seconds at her patient.
Who, of course, was Margy. She was in her wheelchair, a red shawl over her torso, her computer screen on the table in front of her. Her face by this time seemed to have frozen in place, but in an impish grin. She raised her eyebrows in greeting as I opened the door. An operatic tenor was in full throttle over the audio system. "We're always arguing," said a short woman with a toy poodle in her arms as she greeted me. "I think the best tenor of all time was Jussi Bjoerling. But not everyone agrees with me."
This was an issue I was ill-equipped to take a position on. We ate, serving ourselves from the dishes on the kitchen counter, getting caught up on what our children were doing, on Eve's fifth-grade pupils, on the health of our aging parents. The woman with the poodle turned out to be Norma Williams, who whispered to me that, although the presidential campaign was in full swing, we shouldn't discuss it, because Margy's parents, who were there for dinner, were Republicans, and everyone else was a Democrat. Margy, listening, started to type me a message on her computer.
As she moved her head almost imperceptibly, the cursor jumped around an alphabet grid, building words by plucking each letter. If she made a mistake, the cursor would back up, and she'd try again to get it right. I sat next to her, reading as she wrote, unsure whether I should keep up or wait for her to activate the eerie automated voice that spoke her words. I read:
"I once got my Republican parents to vote for Chuck Robb." (She knew I was familiar with the Democratic former senator and governor.) "But I had to cry."
I laughed. It was a genuine laugh, but also tinged with relief that I could laugh. That in fact I could not resist laughing. In that moment, we became co-conspirators, like little girls giggling behind the teacher's back. I laughed at the thought of anyone crying on behalf of stiff Mr. Robb, and at the befuddlement that must have been felt by Margy's parents.
I confess I don't remember the movie we watched that night. It was German, with subtitles. But I do remember that I forgot to be squeamish.
A doctor once said that having ALS is like having a front-row seat at your own funeral. Nobody knows why or how you get it, but what happens is that gradually your motor neurons go out of business, leaving you with a perfectly compos mind, all your senses, your bladder and bowels, but almost no functioning muscles anywhere else.
Margy's first symptom appeared in the summer of 1999 -- "a funny little twitching in my left thumb and forefinger." She had been working as the manager of the 5th Congressional District office in Farmville, first for Rep. Dan Daniel (D-Va.) and most recently for Rep. Virgil Goode (then D, now R). She thought she had carpal tunnel syndrome and went to see a neurologist, about a week before her 50th birthday.
The day before that birthday, she spent $1,400 on a long-term care insurance policy -- the last day she could get a cheaper rate. As a single woman without children, she didn't want to be dependent on the meager care offered by government programs. This prescient move, made against all advice, has proved to be the smartest decision she ever made.
By the time she was referred to specialists in Charlottesville, she kind of knew what was up. Surfing the Web, she happened upon an ALS site, and the symptoms described matched her own: ". . . tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches and uncontrollable periods of laughing or crying."
"The hair literally stood up on the back of my neck and I felt like I had been punched in the stomach," she later wrote to friends.
The ALS Association Web site goes on to say: "The disease eventually affects speech, swallowing, chewing and breathing. When the breathing muscles become affected, ultimately, the patient will need permanent ventilatory support in order to survive."
When her neurologist in Lynchburg confirmed her fears that it was not carpal tunnel syndrome, Margy fainted. The next few days she was in a kind of daze. She confided in her younger brother Jim and talked to her pastor, Don Wartters. "I think we went through a whole box of Kleenex that night," Wartters recalls.
Over the next few months, her condition rapidly worsened. First came leg braces and a walking stick, then a walker. She couldn't swim anymore, let alone play tennis, scuba-dive, hike, ski or do any of the other activities she was known for throwing herself into. She fell often.
Anyone who knows Margy will tell you she is a strong-willed person, with both the positive and the negative connotations of the phrase. On occasion, the words pig-headed, stubborn, hard-to-please and bossy have been used. But no one has ever said she felt sorry for herself. And through all of these traits -- her self-assurance and aversion to victimhood -- she has survived almost four years longer than she was told she would.
And not just survived, but lived. The first thing she did was take one last trip, to Italy, with her cousin Janet Watkins Parrish and her friend Helen Parrish, wearing braces on both legs and using a walking stick as a cane. One day, walking toward the Duomo in Florence, she lost her balance and fell flat.
"As it was, I just hit the hardest bone in my body . . . my head . . . and had a little cut right at my hairline," she wrote later. Helen helped her up to a sitting position. Bleeding and dazed, Margy sat for a few minutes. "Just then, I felt gentle hands press my bleeding forehead and my head was slowly being lifted. What I saw first was sandal-clad feet, a brown robe, a Crucifix and finally the kind, bearded face of a Monk who was speaking to me softly and comfortingly in Italian. Now, I don't remember seeing anyone else on that street before I fell. But, besides the Monk, there was a person with tissues to wipe away the blood, a person who had a bandaid, a person who had water for me to drink, and a person who had a cell phone, which he used to call a taxi for us.
By the time the taxi, a Mercedes, arrived, it was decided that I didn't need stitches and that I could return to our hotel and rely on the restorative powers of a glass of red wine. I will always remember this incident, not because of my fall, but because of the 'unseen' safety net, which has been there for me all of my life. This incident was the most tangible evidence to me of a God who is continuously watching over us."
As the pillars of Margy's former health have crumbled one by one, leaving her without speech, mobility, independence, or even the simple pleasures of food and drink, she has tried to outmaneuver the disease. She persuaded her family and friends to help redesign her house for a wheelchair, her garden for beauty and her computer for communication. When the walking stick had to be replaced by a walker, she made sure it was red, her favorite color, as is the wheelchair that followed. When she could still power it with her leg, she drove it well above the speed limit for wheelchairs. She made sure her renovated house included a skylight over her bed, so that when she becomes bedridden at least she will be able to see the sky.
At first, her sister-in-law Allison Watkins -- a school librarian with two young children who lives nearby -- helped her dress each morning and undress at night. Eventually, Margy accepted that she needed paid caregivers, first 15 hours a day, now 24. When eating even a bowl of oatmeal began to take half an hour, she reluctantly agreed to have a feeding tube, called a PEG, installed. By that time, she'd lost 30 pounds.
"When I first began to have trouble speaking, chewing, and swallowing was when I should have begun seriously considering a PEG," she wrote. "The catch was, of course, that I did not want to admit that I was having problems because it meant I was giving in to the disease. I also did not recognize the pace at which I was losing these abilities."
Now her calories are poured in, 144 ounces a day, a combination of prune juice, liquid protein and pills. It is a small consolation that the feeding tube plug is red. (One day, while sitting in the garden, a hummingbird mistook the plug for a feeder and landed on it. Not many of us get to see a hummer that close.)
The essential Margy remains unchanged. She was always the organizer, the any-excuse-for-a-party spark plug, ready to take off camping or head to Washington to the opera. If you wanted to stay up late yakking and drinking wine, she'd be the one with you -- and then get up and play a ferocious game of tennis the next day. She can't go camping anymore, and the boyfriend who had the hot-air balloon is history, but she can still organize parties.
The computer allows her to do this. It also allows her to keep writing, communicating, forwarding jokes, ordering movies and expressing opinions. She is at the desktop from 9 to 2. It can take half an hour to write a three-paragraph e-mail, but it allows Margy to grab hold of the steering wheel. She sends out directives and invitations: She needs birdseed. The garden plantings must be red and blue (no pink). Could someone please go to the ALS clinic in Charlottesville with her? She organizes a music evening, a Christmas party, celebrates a slew of family birthdays, welcomes a crew of sorority sisters from her days at Queens College in Charlotte, N.C. But the focal point of her social life, the high point of most weeks, is Movie Night.
Sharon Reilly says that Movie Night began with Cher. She'd told Margy that she couldn't believe Cher had ever made a good movie, and Margy insisted she come over and watch "Tea With Mussolini" to prove her wrong. They made a party of it. Since then, Sharon, who is a physician, has become Margy's GP as well as her friend.
As is her wont, Margy created a name for the Movie Night group -- the Starlets. I'm a part-time Starlet, depending on my irregular visits to Charlotte County, where my family has a house. And now, it seems, I have become the unofficial historian. And so it is my task to try to pin down in time a ritual that evolved gradually, as one or two people watched a movie together, then three or four, and then more.
When she reconfigured her house in anticipation of declining mobility, Margy arranged a "movie center" in her bedroom, with a wide-screen television and stereo sound. Around this time, her friends noticed that Margy was having more trouble managing food than they had realized. The refrigerator was virtually empty, and she could barely lift a package to put it in the microwave.
"We decided we should come over more regularly and make dinner," Sharon says.
Movie Night is such a simple thing to do, really. Everyone brings something for the meal. At around 8, Margy's synthesized voice announces: "Time!" and she goes off with the caregiver on duty to prepare for the night, while the rest of us clean up after dinner. Once Margy is installed in her adjustable double bed, Eve sets up the movie (she seems to be the only one who can manage the intricacies of satellite TV, sound and player). "We try to avoid anything too depressing," says Eve, who consults with Margy over the weekly viewing. "And no horror movies." "Billy Elliot," "Mostly Martha" and "Babette's Fest" have been favorites.
The rest of us gather -- on lawn chairs, on the floor. One person sits in the red wheelchair and another has the seat of honor next to Margy on the bed. We watch the movie. We don't sit around and discuss it afterward. Margy is usually tired out by then, and so are we.
Simple, and yet fundamental -- unaffected companionship. For a few hours, we are all doing the same thing, in the same way. Watching a movie. Laughing, crying, admiring a hunk, ridiculing a flop. During this time, there are no disabled people in the room.
For whatever reason, it's a community of women, to a large extent, although Phil Walker and Murrie Bates, who have known Margy since high school, come occasionally. "I think men don't like sickness," Ann Charlton says. But nobody likes sickness, we agree, so it must be something else as well -- that women tend to gather around in the face of trouble. "It helps to help," she thinks.
For a while Ann felt bad to be eating good food while Margy was getting liquid in a feeding tube. But Margy told her, "it makes me happy to see everyone having a good time." For some, the motivation for coming to Movie Night began as an obligation, that sense of wanting to do the right thing, earn some cosmic brownie points by visiting the sick. But that guilt burden doesn't keep you coming year after year. What draws people in is new friendships, laughter, a break in the routine. No one feels that she must go every week.
"Sometimes I wonder who any of us are doing it for anymore. We get as much out of it as she does," Ann says. "Sure, she's amazing, and a great inspiration. But I'm at the point where I don't think she's going to die. It's going to be like this forever."
Over the years, the Movie Night group has become a community. And Margy made it possible. Less because of her illness than because of who she is -- the welcoming hostess. In choosing not to withdraw from life, she has allowed others to expand. Those who were squeamish about disability have learned not to be; and those who came out of a sense of charity have been able to discard that ersatz sentiment and discover real feelings underneath.
When I interviewed them for this article, each one said almost the same thing: Margy inspires them. Their own troubles pale in the face of hers, and her lack of self-pity banishes their own. We are all old enough to have learned the platitudes about smelling the roses and living each day to the fullest -- it's her cheerfulness in the face of an Everest-like challenge that stuns us.
"She makes me feel like I need to be a better person," says Pinky Bates, who has known Margy since they were teenagers and is now the superintendent of instruction for the Charlotte County Public Schools. "It's how she has accepted her disease and helped others to accept it . . . She makes the effort. She sets the bar. She does have her moments -- but it makes her human. She can't even get an eyelash off her cheek."
"It's the high point of my week," says Eve, a self-professed introvert. Eve used to give in to the fatigue that had accrued after teaching grade schoolers all week, but now she pulls herself together and goes to Movie Night.
Contact with Margy is not limited to Fridays. Four members of the group are certified master gardeners, and they take care of her garden. At Christmas, they all decorate her tree with waxed leaves, the way she likes. Others provide platters of canapes when Margy decides to host a reception (she is on the board of the Hampden-Sydney Music Festival). And, in between times, her friends may get an e-mail like this one she sent in late April:
"Hi Starlets, We are, as I write, being visited by a Rose-breasted Grosbeak, one of the very few I've seen over the years. This beautiful bird has a black head, a white breast with a deep rose bib down the center, and black and white sort of mottled back and wings. A real standout. I've never seen more than one at a time so, they must travel solo. Hold it . . . Roger Tory Peterson says the bird I've described is, of course, the male and the female closely resembles a Sparrow. (figures!) They winter in the West Indies/Mexico and summer in Canada. Smart birdies!!! See some of y'all tonight. Xoxo, Margy"
Otherwise, Margy's days are governed by routine. Five feedings, four trips to the bathroom. The scent of Vicks VapoRub under her nose, a stroke of moisturizer on her skin, the touch of rubber gloves on private parts.
Pat Holt, who has been Margy's daytime caregiver for nearly four years, arrives about 7 a.m. She prepares the 375 liquid calories for Margy's first meal, with her medications -- muscle relaxer, blood-pressure reducer, antidepressant -- and then checks to see whether her patient is ready for the morning ritual.
First, Pat tunes the radio to classical music. She removes the plastic boots that keep Margy's feet from curling in, and then gets the wheelchair and locks it in place by the bed. She puts the turntable next to the bed, turns off the BiPap breathing machine and removes the mask from Margy's face, and the pillow from under her neck. There ensue delicate gymnastic moves to place her legs on the turntable, pivot and help her into the wheelchair.
Each part of the routine is broken down into precise and necessary steps. It is not easy to lift a 130-pound woman, and caregivers have dropped her more than once. Pat is the most experienced at the morning process, and even she has had difficulty.
"Brushing her teeth is the hardest part for me," she says. Since Margy can no longer swallow, there is also a continual need to suction or wipe her saliva, or tip her head forward to let it drain out.
All of this, plus the showering, drying, cleaning her feeding tube and nose, dressing and grooming that follow, takes at least an hour. After breakfast, Margy goes to the computer.
There are six caregivers on the payroll: Pat Holt, Marlene Wilson, Therwanda Jennings, Jennie Dailey, Tricia Jones and Willie Mae Braxton. Their training is, at most, a week of "personal care" instruction, but their main qualifications are being strong, caring and attentive, for roughly $10 an hour. The long-term care insurance that Margy bought on the eve of her 50th birthday, plus her $1,200-a-month government pension, pays for about two-thirds of the $100,000 annual cost. The rest has come from her savings and investments that are rapidly depleting.
But the caregivers make all the difference. Without them, says Margy's doctor, she would most likely be in much worse shape physically, mentally and spiritually.
"One of the nice things about her arrangement is that her family and friends are nearby and emotionally supportive without having to be involved in mundane things like showering or toileting," says Vern Juel, who is Margy's neurologist. "It seems there is a lot of stress that develops when that boundary comes down, and unfortunately most people's resources are such that they have to rely on their family for those things." The caregivers are plain-spoken country women, and their boss is not always an easy client.
"We're like an old married couple," says Pat. "We do get ornery with each other sometimes. If I get fed up, I do tell her. She takes stuff out on us, too."
Being so permanently at the mercy of others, however merciful, sometimes leads Margy to explosions of frustration that can leave her in tears of powerless rage. It isn't pretty. But it's real. Who among us would ascend to sainthood just because we're in a wheelchair?
One evening Marlene Wilson had planned a surprise birthday party for Margy. Several friends were asked to keep Margy in her room while the decorations and refreshments were put out, so she would be surprised. But Margy didn't understand why she was being kept in her room and became furious and upset, expressing herself with the strained noises and flushed face that spell agitation. Her frustration made her cry, and nobody knew what to do.
"We won't be doing that again," says Eve.
Pat's shift ends at 3 p.m., when she hands off to Therwanda, or Jennie, or Marlene. Willie Mae or Tricia are usually there for the night shift. Margy's brother David, known as Dozer, handles the hiring and scheduling, and her brother Jim does the accounting and finances. Jim is also the technology expert, and Dozer mows the lawn, cleans the gutters and makes sure her generator is working when the power goes out. Margy's sister, Liz Carson, who lives an hour away, usually takes her (with Pat) to her medical visits. Liz also does the household shopping. (As for clothing, Margy -- now needing two caregivers along -- can still blaze through TJ Maxx and spot a bargain. Preferably red.)
I asked her if she worried about the impact on her siblings and their families.
"Can you imagine what I would do if I DIDN'T have my family so near?" she wrote. "Yes, I do worry about Jim and the pressure of keeping me solvent. He has done a masterful job since I lost the ability to write in September, 2000. He DOES tell me no when whatever I have asked of him doesn't suit. Because he works here in town, Jim does bear the brunt of my reliance upon my siblings. No, he never complains, nor do Liz and Dozer."
That her relatives are emotionally stressed is no secret. But they're not going to complain in public. "You do what you have to do," Jim says. "You do things you never thought you'd have to do. And you find out they aren't so bad." Jim, who has the same mordant sense of humor as his sister, admits there is also financial stress. "If she keeps going much longer, she's going to have to go back to work," he jokes.
Juel, the neurologist, says that five years after the onset of symptoms, only 40 percent of ALS patients are still alive. There is very little that can be done for them, aside from getting the most up-to-date wheelchair and palliative medications (laxatives, antidepressants, muscle relaxers, flu shots, etc). Margy has elected not to take Riluzole, a medication that seems to prolong life for ALS patients but does not help muscle strength (and costs almost $900 a month), because she doesn't think it would do much for her, and there is no treatment on the horizon that will make her better.
Her death will come from what is euphemistically referred to as "respiratory failure." In other words, her muscles will become too weak to push her breath in and out. She has written advance directives that she does not want to have a mechanical ventilator, which requires surgery.
From another letter she wrote me:
"What I never did was ask 'Why me?' because I've always thought that to ask that is to wish the disease on someone else. I was brought up in a very stoic household. My parents never complained about any physical ailments that I remember. My mother had frequent migraines but she never took to her bed. She kept on truckin'. When we children complained about minor things, we were met with Mama's 'Oh . . . tough' or Daddy's 'That's TOOOO bad!' I'm certainly not making myself out to be a saint. On the contrary, I have frequently let my frustration get the better of me. There is a lot of that to deal with. I had rarely been sick in my life and never seriously. I was blessed with an athletic body and participated in many sports. When ALS happened to me, I truly grieved over the loss of my physical abilities. That's not the same as feeling sorry for myself, something I've tried very hard not to do because I feel it's not only a colossal waste of time but chases away family and friends. In fact, I don't feel sorry for myself because I really have a pretty excellent life. I NEVER expected to live this long with ALS. When I was able-bodied, I did a lot of traveling and didn't deny myself anything within reason. I used to ask God's forgiveness for my self-indulgence but now I'm thankful for it! Besides my family and friends, I'm also thankful: That I experience no pain and rarely any discomfort at all. That I don't have to take any drugs or chemicals with awful side effects. That I don't have a husband and children because this would be much more difficult. That I have such great caregivers. That I have such wonderful doctors . . . That, because of my faith in God, I have no fear of death. That I've had a truly active and interesting life, which continues to this day. That I live in a time when technology allows me to write and to communicate with others. Last, but not least, ALS saved me from having to work for a Republican!"
At Margy's most recent checkup, Juel said her "pulse ox," which measures the amount of oxygen getting into her blood, tested at 99 to 100 percent of normal. So, there are parties to plan. Thanks to the master gardeners and her brother, she can spend the summer watching the flowers bloom and the birds enjoy her bounty.
And of course, there is always Movie Night.
Megan Rosenfeld, a former Washington Post reporter, is a freelance writer in Washington.