by Sukey Forbes
Had I come unglued? Lost my mind? For Melville’s Ahab, it was the “whiteness of the whale” that most horrified him. But for me, I saw even this fierce creature through Emersonian eyes.
The rock where I was perched was a rock that Charlotte and I had jumped off of, laughing and splashing as we entered the then safe waters only a few weeks prior. But now this representative of the wild, uncharted territories was trapped right here, unable to get back to where she belonged. Was Charlotte going through something similar in a parallel universe? The marine biologists on site calmed the shark and tagged her with a monitor and nurtured her until they could coax her out of the lagoon and through the small channel back out into the open water. Two days after she found her freedom, she managed to dislodge her tracking device and it floated to the surface. Maybe this magnificent animal just didn’t want to submit to rational study or even detailed observation. Maybe she preferred to remain a mystery, fading back into her natural environment.
7
Snow Falling Faintly
In ancient times the autumnal equinox was thought to be when the physical and the spiritual worlds were most closely aligned. As the days shortened and the nights drew long, the Celts, for one, imagined the souls of the dead coming back to mingle with the living, so they built bonfires in their honor, but, somewhat conflicted, they also wore masks to hide from any spirits who might bear a grudge. Eventually, the church co-opted this celebration and turned it into All Hallows’ Eve, which American marketers co-opted and refocused on children’s love of dressing up and eating candy.
With October drawing to a close, Cabot and Beatrice, like grade schoolers everywhere, wanted to spend All Hallows’ Eve trick or treating, so we took them to a costume shop in Salem—“Witch Capital of the World”—on Boston’s North Shore. We found a race-car-driver costume for Cabot and a ladybug for Beatrice. We also found the very same Cinderella dress we’d bought for Charlotte the previous spring at Disney World. I have a photograph of her in it that breaks my heart, because that was the happiest I’d ever seen her. In Salem, though, they had the dress only in extra-large, which I took as another sign from my daughter, inflected by her wicked sense of humor. I bought it and stuffed pillows all around and I became a big fat Cinderella. I think it was the only time we laughed that whole year.
Michael’s costume was a knight in shining armor, but sadly, as the weeks rolled by, that choice was becoming less and less appropriate, at least in my eyes. My husband had always been my hero, and in the past when he held my hand or reached for me it made my whole world right. But each night that autumn as he and I held each other in bed, not even his strong arms could make me feel safe. I thought, “If I can’t feel protected when he holds me, I’ll get closer—I’ll crawl inside him if that’s what it takes.” So each night I took off all my clothes and asked him to do the same. I molded my naked body to his and wrapped my legs around him and pressed closer and closer, remembering the flowers we used to preserve between the pages of heavy books. If you didn’t squeeze them firmly enough and left air spaces, the petals would brown and wilt. I was trying to preserve our connection this same way, trying to eliminate the gaps, but I felt that if I pushed too hard against his body I’d simply come out the other side. There was nothing solid anymore. It was as if my husband had dematerialized.
I was equally fragile, only more circumspect about it. As soon as Michael went off to work each day and the kids went off to school, I’d go up to Charlotte’s room, crawl into her bed, and weep. But whenever he and the kids were home, I soldiered on, working hard to appear more functional than I was, the perfect wife and mother, losing myself in Martha Stewart hyperactivity.
One day I turned my attention to Charlotte’s bathroom, where everything was still eerily, unpleasantly perfect. I stepped in and surveyed the whale-motif shower curtain and the matching whale-motif step stool. I had decorated this little room to suggest a coastal feeling of summer sun and fun, but she’d barely spent any time there. A few things were in the medicine cabinet, some towels underneath the sink. Now I decided I would set up the linen closets properly, but first I wanted to put down shelf paper, and before I could do that I needed to wipe down the shelves one last time.
During the spring, every surface had been cleared out, cleaned, sanded, and painted. I pulled over the step stool and reached up with the sponge. There on the top shelf, way in the back, was a cheap plastic angel, brushed velvet over a plastic form, covered with sparkles, wearing little faux velvet wings. Immediately I burst into tears. I picked up this little trinket and looked into the tiny face. The shelf had been freshly painted; nothing else had been left behind. The only conclusion I could draw was that this was a gift for me from Charlotte.
I put the angel in my pocket, thinking I would maybe look at it again a time or two during the day. As it turned out, it was to become my constant companion over the next several years of grieving.
Even though my “strength” was far more appearance than reality, I think my husband resented the way I seemed to be holding it together. And even as much as I understood and shared his misery, I was beginning to think he talked about Charlotte way too much. Each of us in our own way, then, was sending out the message that the other wasn’t grieving “right.”
Michael was, however, holding things together brilliantly at work. We had come to Boston so that he could set up a new office for a London-based venture capital firm, and all the other senior partners were Brits or South Africans. They tried to be supportive, but this was very much a stiff upper lip/carry on sort of crowd. They would call me from time to time on fishing expeditions. “How’s he bearing up?” they’d ask. I’d lie and say he was doing fine.
One night Michael had dinner with a junior partner. “My daughter died last year,” the younger man volunteered. “She was hit by a car.” My husband was dumbfounded. Nobody at the firm knew this. This young man was offering sympathy and solidarity—“You can talk to me”—but even as he did so he was asking Michael not to tell the others.
It was at about this time that I began to get phone calls from the hospital. One or two were about bills for services not covered by insurance, but there were also the calls from the marketing department. “Was your experience at Newton-Wellesley satisfactory? Did we exceed your expectations?”
“You’re kidding, right? My daughter died that day.” I read them the riot act.
I also heard from Charlotte’s pediatrician in Palo Alto, the one who had seen her after the North Carolina incident and who had been so reluctant to enter the suspicion of malignant hyperthermia into Charlotte’s record. It was a very stilted conversation. She called to offer her condolences, but clearly there was something else bothering her, something she couldn’t quite say. It was as if the stumbling for words and the awkward silences were an act of contrition. I think she knew she had not been as supportive as she might have been and now she wanted to apologize, but couldn’t. And of course her vague intimations of guilt sent me into my own paroxysms of self-doubt, wondering if I had done all I could to get Charlotte the care she needed.
I went back over everything Annie had told me again and again. We had monitored Charlotte’s physical activities. We had managed her fevers with Tylenol and ibuprofen. The only reason we had not given her the test for malignant hyperthermia was because a positive result would have made no difference. As Anne had made clear, MH could only be managed—never cured—and, as she had advised, we had simply assumed the worst and acted accordingly, taking every precaution. Even when we were sure we were doing everything we could to address that threat, we pursued every other health concern that had ever been raised. She had been born with a small trachea, and she’d suffered from barking coughs as a baby. She also had a Bell’s palsy that accounted for her crooked little grin. We looked into all of it. Then at school, on a test for muscular coordination, Charlotte did not do well. And her body had begun to change in ways that concerned me. Her legs w
ere taking on the muscular look of a serious gymnast’s, but she was just a normal little girl. I became concerned that she might have a more serious neuromuscular disorder, so we took her to Stanford Medical Center for a brain stem MRI, but the test showed nothing out of the ordinary. The most precise diagnosis that conventional medicine could come up with was “congenital anomalies.” I continued to worry about multiple sclerosis, perhaps, or muscular dystrophy. What I did not want to contemplate was any association between these changes and the condition that had nearly killed her in North Carolina, and that might kill her yet.
Just before we left California, I took Charlotte to a chiropractor who used a technique called applied kinesiology. This woman was a little beyond my comfort zone, but I figured we should cover all the bases. She gave Charlotte a full physical, examined her musculature, tested her for range of motion. “Her spine is uneven,” she told me, and she ordered X-rays. Then, as she was wrapping up our session, she looked at me and sighed. “This is a little girl with a lot of stuff going on.”
We moved east shortly thereafter, so there was no real chance to follow up, and after Charlotte’s death this woman’s offhand remark haunted me. Charlotte had always been the child with more fevers, more allergies. So I called the clinic back in California and told the chiropractor what had happened and asked her about her comment. Was there something I’d missed? Had I not listened properly? What had she meant, exactly, by “a lot of stuff going on?”
There was a long pause. Then she asked me, “Did you have her adjusted?”
“No,” I said. She was talking about the kind of spinal manipulation that chiropractors do.
There was another long pause. Then she said, “You should have. I should have been there. I could have saved her.”
She then went on a rant about how “everybody knows” that a spinal adjustment can bring down fevers. She dressed me down for not pursuing this readily available and perfectly obvious remedy, seemingly oblivious to the fact that I was dissolving in tears at the other end of the line. I have no idea why I stayed on the phone, listening, saying nothing as I shook with rage, unless I was just taking one more opportunity to punish myself for letting my child die.
It was not long after these bruising interactions that the results came back from Charlotte’s autopsy. According to the report, the findings were consistent with “the supposition of malignant hyperthermia.” This lent weight to Annie’s assessment, but it was still not an ironclad diagnosis. The disease leaves no trace in the tissues, so the only definitive markers are deeper down, in the genes. Anne had arranged for some of Charlotte’s genetic material to be sent to the only two labs in the world equipped to conduct the more stringent genetic tests, and now those researchers wanted Michael and me, Cabot and Beatrice to provide blood as well so that the whole family’s DNA could be tested. We just couldn’t face that yet. How would we react to whatever we learned? Would there be more recriminations? We were fragile enough—our marriage was fragile enough—without adding the prospect of blame for things we couldn’t control.
Through all these weeks of self-torture my main support was Sarah, who had returned to her life in California but was always available to me. I didn’t want to abuse our relationship, especially given that counseling was her profession, but she was a dear friend who just happened to be a therapist and who had also shared the same life-altering experience that was making my life hell. We were both soldiers fighting the same war and looking for answers. The combination made it hard to resist dialing her number, which I did almost every day.
Sarah recommended a book to me, Huston Smith’s The World’s Religions, and she and I would talk for hours about our own personal theologies. She was three years ahead of me in the grieving process, but I was right there with her when she told me about her ideas of “soul groups,” the notion that we pass through eternity in a cluster of souls, each one taking a different form and setting up different relationships with the others during each incarnation. She was so responsive and welcoming that it made me realize how little I had done for her when her son Wyatt had died. She had spent the last year of his life taking care of him twenty-four/seven. He and Beatrice had been the same age, and I knew how hard it was for Sarah to see her, so we didn’t do kid things together. Still, I called often and we got together to talk, but I could have done so much more. “In six months she’ll be fine,” I’d thought at the time. Little did I know how naive I was being. After six months, I was just getting started.
• • •
In November we joined a therapy group for families who’d lost children. This was at Parmenter Health Care in Needham, and they did a great job, especially for the kids. There were Saturday classes for children, with age-specific activities such as dance and art to help pull them out of their grief. In one project the children each made a small box in which they could put prayers and notes and keepsakes from their lost loved one. It was a bit like the “fairy holes” we’d set up for the kids on Nashawena.
While the children were involved in these sessions, the parents would have their own group therapy in the other room. These large co-ed sessions had a positive dynamic, and I found it relatively easy to be emotional, to reach and connect even when discussion was about very painful things.
But there were also separate sessions on Tuesday for fathers and on Wednesdays for mothers, and for me these turned out to be excruciating. Maybe the soul-baring talk was just too intimate for my level of repression, but it also seemed that many of the women were trapped in their grief. That included me, of course, but the distinction I’m making is that I at least wanted to find a way out. A few of them seemed content to make grief a full-time job, letting it expand to fill all the space of the missing person. I wanted to build an arsenal of weapons to fight my way back out of that dark space. I was determined to shrink the space my grief occupied and to own it, but I did not want it to grow or fester inside of me like a disease.
One woman in particular was really struggling, and really vocal, and she crowded out the rest of us so much that we had to reach out to the therapist separately to try to reach some kind of accommodation. All along, of course, I was wondering if the problem was really my own state of denial. If I were healthier, I thought, perhaps I, too, could be that dramatic and open and expansive in expressing my sorrow. I envied them their access to their sorrow. As it was, I forced myself to endure these frustrating, often depressing sessions for three years—another instance, perhaps, of guilt-ridden self-flagellation. Leaving most sessions, I would feel empty, alone, and incapable of human emotion.
Also in November a new mentor came into my life, a woman in the Boston area named Stephanie Warburg. Ten years earlier, her son had died from leukemia, and she’d started a support group for grieving parents at the Dana-Farber Cancer Institute. Mutual friends suggested that we get together, and we began to meet for lunch or have coffee. We would talk for hours, really sharing our deepest feelings about this strange and horrible thing that had happened in our lives. She said we were like combat veterans who needed to talk with other combat veterans, because nobody else could understand. Stephanie became my East Coast Sarah.
Max, Stephanie’s son, had been eleven when he got sick, but his disease, chronic myelogenous leukemia, is an adult form, and it required grueling bone marrow transplants. Max had endured the search for a donor, then radiation that was almost as debilitating as the disease, followed by the insertion of the new marrow. And then he died.
There had been eighteen different people in her support group, “which meant that there were eighteen different approaches to getting through the day,” she said. She told me about a nurse who also lost a son but who maintained a rock-solid faith in a Catholic version of the afterlife. There were others, she said, who had consulted with shamans. The common thread through this wide variation was a refusal to accept that death was simply the end.
“For myself,” she told me, “I had to
believe I’d see him again.”
That was where she left it, but I had the feeling that she wanted to say more. It seemed as if she were holding back, maybe waiting until I was further along in the process. But even in her reticence she extended a promise that gave me hope. She had run her group for two years, and then, as she explained, she didn’t really need it anymore. Something had given her a sense of closure. Something had put her mind to rest.
I thought about the friend of a friend who’d had the glimpse of the afterlife and found it so appealing that he didn’t want to come back. I thought about Robert Swain and the “peace” and “freedom” he’d felt as death closed in on him.
What did it mean that this kind of brush with the spirit world was so common? People always described death as a movement “toward the light,” or with some other, equally appealing image. Was it all just folk legend meant to comfort the survivors, or was there really something to it? Maybe dying simply releases some kind of brain chemical that gives everyone the same blissful sensations? Could something biochemical account for the fact that both Sarah and I—and now Stephanie, too—found the idea of “soul groups” and reincarnation persuasive and compelling?
Emerson didn’t have much to say about the afterlife. I think somehow, for him, the “after” and the “life” seemed to be one. So I began reading Huston Smith’s book and everything else I could find on death and dying, and on all the spiritual traditions from ancient times to New Age. I read Elisabeth Kübler-Ross’s first book, On Death and Dying, the one that inspired the hospice movement and established the five stages of grief: denial, anger, bargaining, depression, and acceptance. But I also read the book she wrote after she’d moved on to the study of near-death experiences.