MIMI
DONALD
JOHN
MICHAEL
RICHARD
MARK
MATTHEW
PETER
MARGARET
LINDSAY
CHAPTER 38
Hi Galvin Gang,
New news on the research front! Harvard study would like to take blood samples of Mimi and Papa’s grand kids that are currently over 18 years of age. This is continued effort in research on schizophrenia.
Mimi and Papa have been active in research since the late 70’s. Dr DeLisi will be sending a phlebotomist this fall. Thought we could make a celebration of it.
I know we all would like to find the cure for this tragic disease. Stand by for when and where to gather.
Love to All!
Mary
Email from Lindsay to family members, September 9, 2016
On a Sunday in November, more than a dozen members of the Galvin family were invited to Margaret’s house in Boulder. The purpose of the gathering was to collect as many DNA samples as possible from Galvin family members who might not be mentally ill, to use as controls against the samples the researchers already had. An assistant of DeLisi’s had flown in for the occasion, along with a phlebotomist who would bring the family’s samples back to Boston.
“It’s like a blood-drawing party,” Margaret said. “It should’ve been on Halloween.”
DeLisi had contacted the Galvins that summer, in advance of the publication of the SHANK2 results. Until then, no one in the family had the slightest idea that their blood samples formed the cornerstone of NIMH’s research into the genetics of schizophrenia—a data set that has played a part in nearly every genetic study of the disease ever since. DeLisi had not been in touch with the family for decades—perhaps not since the late 1980s when a colleague of hers contacted them to follow up on DeLisi’s first visit. Whichever family member took the call refused to set up an appointment and asked them not to call again. It happens sometimes: Families change their minds, or the researcher calls at an inopportune moment.
The family was not named in the study itself, of course. But DeLisi eagerly shared the news of the mutation with Lindsay, who spread the word to her sister and mother. Mimi, who had just turned ninety, was humbled a little by the news. She had spent so many years blaming the illness on Don’s side of the family that there was little for her to say now, except to laugh shyly. But for both Lindsay and Margaret, there was no small amount of schadenfreude, seeing their mother so definitively disproven. And it was exciting for them, too, to see the research that had begun so long ago continuing now with the possibility of something to show for it. For the first time in years, they felt something like hope.
No one at the blood drawing would be told if they carried the SHANK2 mutation or not; the results of the DNA tests would be used anonymously, for research purposes only. “We’re numbers, not names,” Margaret said. Still, she and Lindsay were surprised to see who came and who didn’t—those who wished to acknowledge the genetic issue they might carry, and those who would just as soon behave as if the problem never existed. Their brother Michael came, but he was not pleased; it felt to him like pouring salt on an old wound. Mimi’s sister, Betty, now in her late eighties, had married and had children who seemed free of the mental illness that haunted Mimi’s family. She was still living on the East Coast, too far away to make the trip, and neither did her children or their families. The next generation had especially spotty turnout. Michael’s kids came; Mark’s children did not; and the son that Richard had fathered at the age of seventeen seemed put out even by the suggestion that he should be there.
The medical people told Lindsay that no-shows weren’t so unusual. They’re terrified of the disease, and simply don’t want to think about it.
A WEEK LATER, Mimi inched from her bedroom, down a short flight of stairs, and over to a seat at her kitchen table on Hidden Valley Road. She moved confidently, but with the help of a walker with a portable oxygen tank hanging over the side.
“I am very arthritic and have replaced joints,” she had said on the phone a few months earlier. “I’m like the Bionic Woman.” She waited for a laugh, then said, “Not funny, dear. Wait till you get there. Two hip surgeries, and I’m ninety, and they’d like to do it again, but I’m too old. I’m simply worn out.”
A clot in her eye made it hard for Mimi to read. “There’s nothing like the feel of a good book in your hand, either,” she said that day in the kitchen, “except that my hands are so bad now I can’t hold a book.” She had hearing aids in both ears that she fiddled with, struggling to understand people in groups. But she could still listen to a Salzburg recording of Don Giovanni. “When I’m here alone I can turn up the opera as loud as I want to, or a ballet, or whatever.” Her mind was as sharp as ever; she remained stubbornly herself—intelligent and very well read, strong enough to have endured any number of horrible tragedies, and yet utterly averse to self-reflection.
Both sisters knew all too well how smoothly Mimi could change the subject when she wanted to, redirecting uncomfortable conversations whenever possible to her experiences with the Federation—“I could almost write a book about the people we met through that, the wonderful nights…”—or her teenage years exploring New York, or Don’s military career. She took credit for the idea of making the falcon the Air Force mascot. “A lot of people have claimed they suggested the falcon first,” she said, “but that isn’t true.”
Gently, the sisters tried to move her on to more meaningful material, even if it meant making her uncomfortable. Though she did not raise the subject, she answered a few questions about Nancy Gary, and the years when she and Don and Nancy and Sam had socialized. “We were quite close,” she said. But she never had a one-on-one friendship with Nancy. “Nancy has never been a buddy-buddy person, as far as I can understand,” Mimi said coolly.
“Why would I have gone to live with them, then?” Margaret asked.
Mimi turned to her daughter. “Oh, because we had four kids in the hospital at one—”
“I know—I know that side of the story,” Margaret said. “But why would they have taken me in, had you not been good friends?”
Mimi waved off the question. “I really don’t know. Well, she saw Brian had died, and she called.”
THE MORE ON the spot Mimi felt, the more she leaned in to her old perfectionism. “I don’t paint anymore,” Mimi said, glancing at Margaret, “mostly because I can’t compete with my daughter.” Margaret had taken up painting, finally, with her own daughters older now, and she was good. She chose natural subjects like her mother’s old paintings, but bolder, more inventive—and was even getting a few sales, right away.
Then Mimi turned and looked at Lindsay. “She’s always doing something. She runs beautiful, big parties. But she lost that contract!” She chuckled lightly. “She was giving the Anadarko party for a million dollars at a clip.”
Lindsay kept a smile pasted to her face. As casually as possible, she listed a few of her recent events, for an investment company and a health care company.
“In twenty years, she’s built up quite a clientele,” Mimi said. “She said, ‘Mother, I won’t do this very long, it’s not very intellectual.’ But the pay was pretty good. She should have gone on to grad school!”
She turned to Lindsay. “Are you going to retire next year?”
“Hopefully,” Lindsay said.
“Hopefully,” Mimi echoed. “And then she’s going to open a bookstore so she can read!” She gazed at her daughters.
“We both—all three of us—like to read,” she said, beaming with pride. “We’re all readers.”
NONE OF THE boys lived with Mimi anymore. Donald moved to assisted living at Point of the Pines three years earlier, after Mimi, sidelined for several months by a stroke, was too frail to care for him by herself at home. This saddened her. She liked having the company. But Mimi still saw them all, and she continued to snap at the sick boys, particularly Peter and Matt, whose hygiene appalled her. Zip up your pants! Where’s your belt? Go take a shower.
Margaret and Lindsay understood that, to a point. But would things with the boys be any better if they were wearing ties and sport coats? By now, weren’t digs like this beside the point? “She’s not able to really share how she feels about any particular thing,” Margaret said, out of earshot of her mother. “But she can be really critical about how the rice is being cooked.”
At the kitchen table, the sisters both laughed.
“Mom,” Lindsay teased, “if you had just said ‘Yes’ more often, there would be no schizophrenia.”
Mimi’s reply came quickly. “My problem,” she said, “was I said ‘Yes’ too many times.”
SLOWLY, WITH HER daughters next to her, Mimi was persuaded to talk about what had really happened—and how she really felt.
She remembered Jim, at the age of sixteen, threatening her with a large pot, and Donald trying to throttle her once when his medicine was misplaced. “It terrified me,” she said. “If it hadn’t been for three or four of the other boys, I think I’d be dead, because he really had me in a stranglehold.”
She had no compunction about saying that Jim and Joe both died of the medicine that was supposed to help them. “Both of those boys would go to the hospital complaining of chest pain and get no attention,” she said, “because they were mentally ill, and they both were dying of heart disease.”
She recalled how shattered she’d been to learn about Father Freudenstein. She and Don suspected nothing, Mimi said, because who would? “Well, we weren’t very savvy parents, not at all. We were as innocent as the day is long, and we let them go.”
She talked about her husband’s fragile mental state, which she felt was connected to his time in the war. “He saw a lot of action. But he never discussed it—I think he just kept it all inside.” His hospitalization during his posting in Canada came ten years after the war. “The Air Force panicked because being an intelligence officer, they wanted him out of there quick. So he was brought to Walter Reed. No disease found. There was no test for PTSD.”
When she talked about being blamed for her sons’ mental illness, she got her back up again. “We were all involved in a discussion with the doctors,” she said, “and they crucified us. We were the worst parents in the world. It made us feel terrible. It traumatized us. Don and I, we were both paralyzed mentally. It just freezes you, because you don’t know what to do. You have nobody to talk to. We were an exemplary family. Everybody used us as a model. And when it first happened we were mortally ashamed.”
She could talk about that shame now, unburdened at last. “Oh, that was the whole thing, it was so embarrassing. The blaming part really traumatized me to the point where I felt I couldn’t tell a friend or anything. It was just all inside, and it was hard, that part. That’s where I think the crutch of the Church kind of helped me. I was accepting it as my lot in life.
“And so I was crushed,” Mimi said. “Because I thought I was such a good mother. I baked a cake and a pie every night. Or at least had Jell-O with whipped cream.”
Between bouts of sympathy for her mother, Margaret remained highly critical of her—how everything in her life was centered around Donald and the other sick boys, to the exclusion of everything else, including the chance to have the relationship she wanted with her. “I never got to have my mom,” Margaret said, “because of Donald.” She viewed her grimly now, as a woman who sowed the wind and reaped the whirlwind. “She got her way,” Margaret said, “and there was a large cost in that in terms of her relationships with her daughters and her other children who were not mentally ill. And so she really lost in the end. She pushed away the people who could have possibly had relationships with her.”
In Margaret’s view, that included her father. “I don’t know, I’m not excusing his affairs, but I don’t think there was a lot of thought going into any of this on either of their parts.”
Margaret could imagine the scenario now in a way she couldn’t when she was younger. Things got out of control because, with such a large family, the miracle would have been that anything ever was under control to begin with.
“I think there was a lack of consciousness in having twelve children in the first place,” Margaret said, “and then thinking that they could raise them to become all-American citizens.”
Margaret and Wylie had their own family now—two teenage daughters, Ellie and Sally—but the frightening aspects of her childhood were still alive inside her. Margaret never forgot how unsafe Donald and her other brothers made her feel as a girl, and so she would not see Donald on her own. She did not want him around her children, either. But now that she was married and well-off with a family, Margaret also felt guilty about having what many of her brothers did not. The act of buying high-priced leggings for her daughters at Lululemon could send her into a tailspin of self-judgment. Her sick brothers never had a chance at this kind of life.
They were going crazy, and I was swimming at the country club, Margaret wrote in her diary. They are still crazy, and I am still swimming at the country club.
So she tried half measures. Margaret helped from a distance, sending cash and gift cards, and propping her sister up on the phone, listening and sympathizing. But she still felt too vulnerable to be part of their lives. “It’s like pouring a glass of water with no bottom in it. You can’t ever fill it up. It’s just futile to try and help them. It’s not like they don’t want to be better, but they just never get better. I really honestly stayed much farther away than Lindsay did.” She stopped visiting the hospitals, and stopped bringing her kids along on the few times she did.
“I’m very lonely on the path through recovery from my family,” Margaret said.
LINDSAY APPRECIATED HAVING her sister to talk with—“just knowing that someone else knows what you’re talking about and knows the depth of the pain.” But Margaret’s distance from the family now felt like another abandonment. She decided to do the opposite—to continue caring for the brothers and seeing her mother and doing it all. Lindsay ran point on every bureaucratic challenge her mother and brothers faced: wrangling Social Security benefits, shopping for the perfect housing situation, overseeing their medical care, advocating for different medications when the current ones seemed to be failing. She took over the boys’ powers of attorney, and Mimi’s, too. When she assumed the caregiver role, she felt as if she were channeling everything about her mother that she admired—the tireless devotion that both doctors, DeLisi and Freedman, had noticed when they’d all first met.
“My parents were so devastated,” Lindsay said. “My dad really crumbled. And my mother really transformed and became this advocate.”
Lindsay knew what she was doing was putting her on a collision course with her sister. Where Margaret was staying away, Lindsay was wondering why no one was helping do what so obviously needed to be done.
“I’ll work myself to the bone and not ask for help,” Lindsay said, “and then I’ll be resentful.”
Lindsay was the first responder as usual when Mimi had another stroke, in early 2017. Once Mimi was in the ICU, Michael and Mark relieved her. Even Matt came by.
In March, Mimi was home and under hospice care, resting in bed without wires or monitors attached. Unless you could afford full-time help, hospice care didn’t mean actual care, just supplies like morphine and directions for how to care for your loved one yourself. In Mimi’s case, this meant dealing with incontinence and catheters.
Margaret joined them once Mimi was back home. She spent time holding Mimi’s hand, giving her little massages. Michael played Brazilian tunes on his guitar. Lindsay tidied the house. The three of them talked about old movies, enjoying being with one another. They spent ten days this way, until, out of nowhere, Mimi started to eat again.
“I thought I was dying,” she said. “That’s why I wasn’t eating.”
Then she asked for a soft-boiled egg.
MARGARET HAD A trip scheduled to the West Coast, where her older daughter, Ellie, was touring colleges. She and Lindsay talked it over and agreed that Margaret ought to go, for Ellie’s sake.
But on the day Margaret left, a confluence of events hit Lindsay in a way she was not expecting.
First her brother Matt—once her soccer coach, now on clozapine and living in government-funded housing—pulled up to the house in his jalopy.
Then came Peter—her old Boulder roommate, now an inpatient at Pueblo, receiving regular ECT treatment—driven in by Michael.
Then came Donald—her oldest family foil, the one she once dreamed of burning at the stake—driven in from his assisted living center by Mimi’s housekeeper, Debbie.
All three sick boys were back at the house. Soon it would be just them, their mother, and Lindsay.
And Margaret was heading out the door.
Lindsay knew that this wasn’t forever—that the brothers were just visiting. But none of that mattered. In a flash, Lindsay was ten years old—deserted, abandoned, forgotten, trapped. She tried as hard as she could, but the sensation shot through her like muscle memory: It’s happening all over again.
IN THE WEEKS that followed, Margaret would come by for an hour or two, but not much more. Instead, she went ahead with a trip she’d planned with some friends to Cabo San Lucas in April, and from there headed off to Crested Butte, on vacation with Wylie and her kids.
Lindsay, furious with her sister, found herself fuming about any family member who didn’t come to see Mimi. Mark lived in Denver, for God’s sake—what was keeping him from driving to the Springs for the day? So did Richard, who had always been so attentive to Mimi—where was he now? Even John, whom she adored, had elected not to come back to see Mimi. He said he’d prefer to remember her the way he liked to remember her—that he didn’t want to see her like this.
“They think it’s weird that I’m hands-on,” Lindsay said. “And I think it’s weird you wouldn’t be.”
The exception was her brother Michael. In 2003, the hippie alumnus of the Farm married his second wife, Becky, who went on to serve on the City Council in nearby Manitou Springs. Still wearing his hair in a ponytail, Michael assisted Becky with her horticulture business and still played small gigs at local restaurants—a completely healthy, functional life, with no psychotic breaks, no delusions, no schizophrenia. Michael’s take on his sick brothers endeared him to Lindsay. “He thinks that traditional psychiatry has damaged them, which it has. I mean, there’s no question,” she said. Just looking at them—overweight, with tremors, stuck in their habits, unable to think of anyone other than themselves—you could tell they were no closer to cured than they were when they each had their first psychotic breaks.
Then again, Lindsay had tried everything else. “I don’t know what the alternative is,” she said. “I’m like, ‘Well, Mike, if you’re willing to take them into your home, off their medication, by all means, go for it.’ ”
Michael had experience in the hospice field. Over the years, he’d taken care of a man in Boulder, and his father-in-law, and his own father, Don, toward the end. Lindsay asked Michael to come and care for Mimi, sharing the duties with Debbie the housekeeper and a family friend, Jeff Cheney. All three, including Michael, were paid out of Mimi’s account—a mixture of Don’s military pension and some savings that Lindsay controlled.
Michael could use the money. But the chance to care for the woman who had loomed so large in his life made the job irresistible. He soon learned that however frail she might have been, Mimi was still in charge. He would offer her Kentucky Fried Chicken for dinner, knowing how much she loved it, and she would refuse, saying she’d had it the night before. He’d make spaghetti instead, and she’d say there was too much of it.
“It got a little confounding,” Michael said. “I almost dumped it on her head.”