In 2006, a lymphoma specialist estimated I had seven to nine more years to live. I was fifty-three. Allie, my firstborn child and only daughter, was just finishing college when I got the diagnosis – non-Hodgkin’s lymphoma – and after graduation she took a menial job working in a group home for disabled adults near home, delaying her plan to live in the western part of the United States. She wanted to be there to help see me through chemotherapy.
Sometimes, on her lunch hour, she would come to the hospital to sit with me during my infusions. Neither one of us wanted to get into heavy conversation, but I was anxious to reassure Allie that the chemo didn’t hurt. I tried to seem light-hearted.
‘Now in a while – once the nurse gives me the Benadryl – I’ll have to close my eyes, but I can probably still talk. Or I’ll listen while you talk,’ I explained the first time.
‘That’s okay, Mom,’ Allie said. ‘We don’t have to talk. I just want to be with you.’
The infusion room was notable only for its drabness. Though the chairs were comfortable, heavy recliners, and new patients were offered their choice of a handmade quilt to keep (I chose a spring-green and yellow-star pattern on my first day), nothing had been designed to assuage fear or to calm the patient. The room had all the aesthetic appeal of a utility closet: it was not so much designed as assembled to get the job done. The windows overlooked the parking lot; the TV clamped high on one wall droned on, turned to the news or a game show or a soap opera.
Though family members and friends were allowed to sit with patients, the cramped spaced seemed to discourage it. On a busy day, when the room was filling up with patients, Allie – slender, a runner – would have to squeeze her uncomfortable hard chair into the nearest empty space, next to my recliner or angled near my feet, slotted in like an afterthought. The rest of the space was absorbed by patients and nurses and IV poles.
The last thing I saw once the Benadryl tugged me down the rabbit hole was the solemn look in Allie’s lovely, grey-blue eyes.
*
A year later, in the summer of 2007, wearing a girly cowboy hat I’d bought her, Allie finally struck out for the west, a plan she’d had since high school. She had been born and raised in Massachusetts; she went to college in Maine. Now she wanted to get out of New England; it was time for the mountains, time for a place like where I, a native Oregonian, had been born. Allie had worked hard all through her school years – she needed a break before she decided what kind of work she wanted to do. I sympathized with her, but didn’t want her to go. I didn’t know how much time I had left. I worried that Allie would feel guilty about her choice after I died.
Allie is my one normal child. My other is a son, Randy, who is autistic and lives at home, and in comparison she has always been easy. She never got into trouble, or gave us any real worries. She was all I could have wished for in a daughter, and everything I had not been: an excellent student; a fine athlete; an effortlessly beautiful girl who could roll out of bed, throw on some clothes and look great without a lick of make-up. She was close to both of her parents – her father Chuck as much as me. Even after she left home for college, she telephoned us regularly to talk things over.
I relished our closeness, something I hadn’t experienced with my own mother. Before Randy was born, Allie and I had spent nearly all our time together, reading and playing in an old house filled with books, cats, dogs and stuffed animals. We read the same books over and over again: Peter Rabbit, The Runaway Bunny, Goodnight, Moon; I recited poetry that allowed for a lot of hand gestures and acting out. One was Richard Le Gallienne’s ‘I Meant To Do My Work Today’:
I meant to do my work today—
But a brown bird sang in the apple tree,
And a butterfly flitted across the field,
And all the leaves were calling me
As I recited the poem, my fingers fluttered and danced around Allie’s head, delighting her.
Before she could read, she sat on the kitchen floor with a little Disney Golden Book version of Cinderella, turning the page at exactly the right place and using the same inflections that I did as she pretended to read the text she had memorized: ‘And such a ball! The King’s palace was ablaze with lights,’ she said in her baby voice. ‘There was music and dancing, and every lady in the land was dressed in her beau-ful’ – she couldn’t manage the second syllable – ‘best!’
An angelic-looking pink-and-gold Renoir child, Allie was a Mama’s girl and shy. She was perhaps five years old when my mother said something to her along the lines of ‘When you grow up and have your own house and family’ – at which Allie began to cry. ‘Oh, I could never leave Mommy and Papa!’ she said. Even as an older child she refused every offer I made to send her to summer camp.
After Randy was born, Allie was understandably jealous of my divided attention, and yet eager for a playmate. ‘When is he going to talk?’ she asked impatiently when he was still in his cradle. And then he didn’t talk. By the time Randy’s autism was diagnosed, I was feeling less close to my daughter and more protective of my son. Out of necessity I became his advocate, battling our town for the school program I thought best for him; supplementing his education by teaching him at home; making up for the perceived and real slights I felt in the world outside and in our family. Allie resented the attention Randy took from me. I resented that she alone was invited to spend time each week with her local grandmother, while Randy was left behind.
My mother-in-law was a small, sweet, immensely kind and gentle woman. She would arrange to pick Allie up at our house, about a fifteen minute drive from the home she had long shared with my father-in-law in a neighboring town. This arrangement was preceded by a tactful explanation: taking both kids was a bit too difficult; she would rather take one at a time. She expressed her wishes in the mildest and least offensive way. She loved Randy, whom she sometimes took care of. But she loved playing with Allie, the only granddaughter who lived nearby. Randy didn’t play.
I understood, and I wanted Allie to be close to her grandmother, as I had been to mine. But it hurt to see Randy left out.
One day Randy was standing with Allie and me on the front porch when Grandma arrived. After hugging him, she took Allie by the hand and headed down the front steps to the walkway leading to the car. Suddenly Randy began to cry, to bawl – a display of separation anxiety that was rare for him, unless I was the one leaving him. Grandma stopped and turned around. She looked stricken, and her face crumpled. She came back up the walk with Allie, took Randy by the hand, and brought him with them.
I tried to be fair to Allie. I told her that whatever she felt about her brother was okay: people couldn’t help how they felt. And she could talk to me about it; she could say anything. But feelings were one thing; behavior was another.
‘Allie bit Randy,’ I told our wonderful pediatrician on the kitchen phone one day. Allie, who was standing nearby and feeling deeply ashamed, had never heard me sound so shocked. Another day, I was watching from a window when Randy joined Allie and a little girlfriend in our tiny fenced backyard, where there was a swing set. As he passed her – they were very young, perhaps four and six – Allie kicked him in the behind, knocking him down. Feeling a scary rage rising, I told my husband Chuck what had happened and asked him to go outside and deal with Allie: I did not trust myself not to hurt her. He confronted her; she confessed, and he gave her a light but humiliating swat on the behind.
She was not allowed to be mean to Randy, I explained to her later. Though she never hurt him again, she continued to resent him.
Something shifted. Where we had once lived in a near-perfect cocoon of love and coziness, a barrier now stood. And this left me feeling so convinced that I had abandoned and failed my daughter, I later blocked out much of the closeness that remained. I was recently taken aback when Allie mentioned the ‘special time’ I created for us to spend together away from Randy each week, time during which we would read or play. We had pretend tea parties with her child’s set of Wedgwood china on the tiny white iron table and chairs in her lavender bedroom, sitting her stuffed animals on the chairs. When she was old enough, I read her Great Expectations and To Kill a Mockingbird, acting out the voices, and making her laugh: ‘Don’t you say “hey” to me you ugly girl!’ said old Mrs Dubose again and again from her porch in Maycomb, Alabama as Scout passed by. Though most of the details of that special time are lost to us both, Allie remembers loving it.
As my daughter matured, she shed her shyness and became increasingly independent. She had a wide circle of friends, both male and female, many of them close friends. Yet she remained emotionally dependent on Chuck and me, turning to each of us frequently for advice and support. When Allie broke up with her boyfriend in her freshman year of college, she called home in tears. I heard the urgent note in her voice.
‘Would it help if I came up to spend a couple days with you?’ I asked.
‘Yes!’ The relief in her voice was heart-wrenching.
‘I don’t think you need to come for two days,’ she began; ‘one day would probably be enough.’
‘Well I’ll book the room for two nights just to be sure,’ I said. I felt wonderfully needed.
It was winter but the roads were clear of snow. I had been to her college a number of times; we vacationed in Maine every year, and I knew the way well.
For the next few days I spent my time reading while Allie was studying. In between classes and when she was done for the day, she walked to the inn to be with me. We’d go out to dinner then continue talking in my room – I mostly listening and saying motherly, reassuring things as Allie talked about her boyfriend and her feelings of loss. It was one of the lowest points in her young life. He had been her first love. Instead of returning to the dorm room she shared with two compatible, jolly girls, she stayed at the inn with me. Every night, she cried herself to sleep in my arms. After breakfast, she’d go off to class.
On the second day it snowed heavily, and I thought Allie could benefit from more time with me, so I put off my return. When I finally left on the third day Allie was in control and the roads were clear. She had cried herself out; she told me she felt better.
*
It was during Allie’s senior year that cancer came crashing into our family, taking each one of us hostage. Everyone reacted differently. Allie, who had always been able to talk to me about even the most intimate things, closed up. She held herself like a cup of hot tea filled to the lip: she was careful not to spill, not to burn herself.
It was late March, and Allie had term papers to write. Graduation loomed. Yet she insisted on driving home to be there when I was released from the hospital. She had been the first to send me flowers. When she saw the more expensive, exotic arrangements alongside hers in my private room – including a glass bowl of floating gardenias from Chuck – she apologized for her poor lavender tulips.
‘I’m sorry I didn’t get you something nicer,’ she said. ‘I thought you’d like these. They made me think of spring.’
‘I love them!’ I told her. ‘They’re beautiful. They remind me of the color of your nursery when you were a baby.’
Yet she was still upset.
Later that day we sat side by side on our large, moss green sectional sofa facing the cold fireplace. We were alone. As Allie typed on her laptop – her gorgeous face framed by the unruly, long blonde hair she often swept up into a pony tail with a coated rubber band plucked from her wrist – she seemed wholly absorbed by her task. She didn’t notice that I was falling apart.
Before I left the hospital, the attending oncologist had offered me a prescription for Ativan to help with my anxiety about the diagnosis and chemotherapy, which I was to begin the next week after getting a second opinion from the specialist. But I was so sleep-deprived and eager to get home, I had left without it. Now I felt panic rising. I couldn’t read; I couldn’t watch TV. As Allie typed, I simply sat.
I telephoned the doctor for the prescription, and asked Allie if she would drive to the drug store to pick it up. She said she would be happy to, but first she needed time to work. Chuck was out. I had stents in my kidneys. I had had two life-saving blood transfusions in the hospital, and was debilitated and rag doll droopy. I would not have trusted myself to drive to the mail box at the end of our street, let alone the twenty minutes to the pharmacy. I felt helpless and utterly dependent on Allie – as though I was the child, she the mother. Why didn’t she notice how anxious I was? Why couldn’t she take a break?
At twenty-one Allie was a highly disciplined student and athlete. She had Chuck’s focus and concentration, which was both maddening and impressive to me: they could work without any real awareness of the other person in the room, something I could never do. And having known only a vigorous, healthy mother, Allie did not realize how I was feeling. Wanting to spare her as much as possible, I didn’t tell her. And I’m glad I didn’t – the feeling passed, and I would have only worried her.
With only six weeks more of classes until graduation, she had taken a whole week off to come home and be with me. She was working on an essay about her college: the first prize winner would get to read it at commencement. Allie wanted badly to win and make me proud. And she did: she won first place.
I was there, watching her read her winning essay on graduation day. Wearing a Wallaroo hat with sun protection built in, I watched with pride as Allie read her essay. I was standing alone under a shady tree, avoiding the sun as my chemotherapy nurse had advised. Our family and friends all sat closer to the stage. I felt removed from everyone, there and not there – a somewhat furtive figure, now marked as sick. I darted for cover at every opportunity as the day wore on, feeling almost ghost-like. It reminded me of how I had felt 45 years earlier, after the death of my father.
That was in 1961. My father died in a house fire while trying to rescue me – a story I have written about for this magazine and another – and on one of the days that followed I walked over from the house in Ft. Rucker, Alabama, where my mother and brother and I were staying until we could fly home to Portland, Oregon, to look at the roped-off ruins of our house. I was eight years old. And there I heard some kids I didn’t know talk about the fire and the girl who had died in it – though I hadn’t died. At that moment I felt invisible, reduced to a shadow, in just the same way as at Allie’s graduation.
*
After my cancer diagnosis, I began writing letters to Allie for her to open after my death. I was inspired by a true story of a very young mother dying of cancer – she recorded a series of video tapes for her tiny daughter to watch as she grew up. One included a touching session on how to put on make-up.
The first, dated 15 August 2006, was written when I was alone at the hospital with an IV in my left arm. Writing in ball point pen on copy paper, I explained that the letters were not intended for publication or as ‘jewels of composition’: they were meant to comfort her and remind her of how much I had always loved her, how proud of her I was. ‘I want to be just like you when I grow up,’ I wrote – something I often told her. ‘My biggest fear since I got my diagnosis in April is the effect of my death on you and Randy and Papa . . . In a way, I think my death will be hardest on you.’
If Allie was going to walk away – as I had walked away, the night before my father died, refusing to kiss him goodnight because he’d been teasing me, she was going to know that I loved her. The letters were a way of minimizing the damage I thought she would suffer after I died.
Allie was suffering greatly. Sometimes her fears leaked out: ‘What if Mom isn’t here when I get married?’ she asked Chuck. ‘What if she isn’t here when I have my own children?’
I tried to reassure her that she’d be all right, but my obsession with death wasn’t helping. And when it came time for Allie to fly far from the nest, I struggled to hold onto her. Instead of being supportive, I tried to clip her wings. We repeatedly discussed how long she would be away, and when she would visit. I wanted her to move back. For the first time, we had some painful arguments. I kept telling her I didn’t want her to regret anything.
‘You raised me to be independent,’ she snapped back.
‘Not this independent,’ I said, thinking of my father’s death, always of my lost father.
‘I’ll just be gone for a few months. I need some time away,’ she said, in a pleading voice. She was to spend a summer in Montana – some 2,000 miles from home – and then return to figure out what she wanted to do with her life.
This was a year after my course of chemotherapy – I was still in treatment, finishing up a series of maintenance infusions. My prognosis had not changed. My median life expectancy was now six to eight more years. The first cancer year had been murky and dreamlike; the second year had the pitiless clarity of fluorescent lights. There was nowhere to hide. I faced my disease relentlessly and without hope. And though I felt threatened by Allie living so far away, I finally saw that the change would be good for her, and I backed off.
On the eve of her departure, sitting next to me on the sofa, she broke down in tears. She said she felt ‘selfish’ leaving me. I wrapped my arms around her and hugged her while she cried.
‘You’re not being selfish,’ I told her. ‘I’m really fine with your decision, and I want you to go,’ I said, and for the first time I meant it. I was ashamed of making her feel guilty about taking a well-deserved summer away.
That summer away became a year, then three years. She worked as a waitress at a resort in Montana’s Glacier National Park, and became an avid hiker. When the park closed for the winter, she moved with the seasonal workers to a warmer place – Maui one winter. She wasn’t ready to settle into a career or graduate school and did not know what she wanted to do with her life. She wasn’t ready to return to New England. We talked weekly on the phone. I alternated between trying to woo her back home and ignoring the issue, hoping she would make the decision on her own. While defending her right to stay away, she clearly did miss us, and home. Still, a tension remained.
As I confronted my own death, my childhood losses came surging back, leaving me feeling orphaned again. I became consumed with preventing Allie from suffering and grieving as I had after my father died. Though her childhood, unlike mine, had been happy and secure, she was also sensitive, like me. I was convinced that if she stayed away too long and I died, she would be deeply wounded.
In my life before cancer, I had watched my share of movies about dying – the heroines noble and brave. I had hoped that if I was ever given a limited time to live I would be as courageous and unselfish as they had been. I thought particularly of a 1983 television movie based on a true story, Who Will Love My Children? Starring Ann-Margret as Lucile Fray, an Iowa farm woman and devoted mother of ten who found new parents and homes for each of her children (including one with special needs) before she died of cancer – on much shorter notice than I was given. The story was a heart-wrenching portrait of selfless maternal love. Like Lucile Fray, I was outwardly strong, but I could only marvel at the farm woman’s selfless persistence. My letters to Allie seemed a poor effort, and I was too upset to write them any more.
During a particularly painful conversation when Allie was home for a visit, she asked why I couldn’t be like the father of one of her friends: he too was dying of cancer – but actually dying. ‘And he wants his son to go away and keep his plans and follow his dreams! He’s encouraging his son to go,’ she said, when I remained resistant to her heading back west. She did not add ‘unlike you’, but I felt as ashamed as if she did. I couldn’t be that man, no more than I could be Lucile Fray. I saw my father, always my father, and the shattered child I had been.
Allie kept in touch by phone – though she telephoned Chuck instead of me as the strain grew between us. We saw each other only once or twice a year. Money and distance hobbled us all. Allie always returned for either Thanksgiving or Christmas, scraping together everything she could from her meager earnings to fly home. We perhaps paid for one flight – we were struggling financially too. One year, Chuck and our close friend Bob flew to Montana to visit Allie; Randy and I stayed home. The next year, we all visited. Allie, who had been gone about two years by then, sobbed at the airport as we left. She missed us, she said, and she missed home. But she was not ready to come back.
It was on one of Allie’s few visits home that she and I began to argue at the dinner table. We retreated upstairs to continue to talk privately, in the master bedroom. Instead of climbing up onto the high canopy bed, as we had so often done, to snuggle and talk, we remained standing, facing each other like adversaries. I stood in the narrow space between the mahogany bed and the taupe wall, feeling trapped and powerless. I had finally arrived at the precipice I had tried so hard to avoid, despite inching closer to the edge with every argument we had. But Allie held her ground.
‘It’s my life,’ said my transformed, tough daughter, in the incongruously girlish voice she had retained. ‘I am not ready to come home or return to New England. I need some time away.’
I finally relented, but not without extracting a promise. ‘Okay. If you won’t come back, you need to promise me that when I die, you’ll be there for Papa and Randy.’ She promised. We both cried.
I knew I had gone too far, laying the responsibility for her father and brother on her – a young, single, heartbroken woman in her twenties, a daughter trying to find her way in her fragile new world. I had betrayed every oath I had made to myself about what I would say to her. I had become the kind of parent I never wanted to be.
How could I have done this? To be sure, cancer is a monster, and I had not recovered psychologically or physically: I felt drugged from the nose up, my head always swimming with the poisons that had killed the lymphoma. Even when I finished treatment, I did not feel like myself. Then came many months of an undiagnosed sinus infection that left me so short of breath, it nearly sent me to the emergency ward. I was frail. And always, there was Randy – I worried incessantly about his future. We kept him home instead of moving him to a state-funded residence for the disabled: how could we ever move him out if his sister lived thousands of miles away? Who would watch over him and make sure he wasn’t being neglected or abused?
And yet in spite of all these pressures I cannot excuse the way I spoke to Allie that night. I was the parent. When I was tested, I failed my daughter, and myself, miserably.
*
After three long years, Allie returned to New England to get a master’s degree in mental health counseling. Finally, she stopped running and dealt with my cancer. She told me about a student exercise in which she chose classmates to represent the members of her family. She selected a young man dressed in dark colors to represent Cancer. He curled into a ball in the center of the family. Finally, Allie was able to tell Cancer and her family her deepest fears. And she was able to tell me. And I knew then that she would be all right.
Once more, during a miserable time in her life, when she was tired, lonely and overworked, I drove to her university town – this time in Vermont – and checked into a hotel to comfort her.
Once again, Allie cuddled next to me on my hotel bed and cried about the lousy men she’d been meeting. She was afraid she’d be alone forever. I had felt the same way at her age.
‘I’m going to tell you what Granny said to me before I met Papa, and I want you to know that I mean it too. I want you to believe me. Granny said, “You’ll meet the right man. And when you do, you’ll get the best.” And of course it was true. And you’ll get the best man too.’
Soon after that conversation Allie met him. J (for Jason) was the man she would marry.
*
Time passed, and something remarkable happened. My oncologist discarded the specialist’s prognosis and told me she thought it possible I could survive. Even if the lymphoma came back, she said, she was sure she could send me into another long remission with the new targeted therapy drugs that had been developed since Rituxin. Here, at last, was hope. I began to let go of the life-stealing fears that had gripped me. I had already benefited from psychotherapy, medication and time. I stopped worrying, and stopped making ‘an enemy of my own death,’ to quote the Buddhist teacher Sharon Saltzberg. I began to live again.
What would the past years have been like, I wondered, if I had known that I would live? What if I had not let those few words from the specialist alter my entire existence? What if I had refused to believe? Was the specialist at fault? Or was it me?
Since the death of my father, I have waited for death to come for me. In my youth I didn’t fear death as much as the when and how of it. But motherhood changed that, and having a child with special needs has made it impossible to think of dying without worrying about Randy.
Two years ago I had a lumpectomy and was diagnosed with a rare pre-cancerous condition. This time I narrowly escaped radiation and was put on medication. Nearly two years later, I am cancer-free, yet remain at high risk for breast cancer and in remission with non-Hodgkin’s lymphoma.
Though I am aware that cancer could return tomorrow in any form, though I still approach each doctor’s visit with some anxiety, I am holding on to hope. I have been strengthened by the lessons of my past, and by mindfulness meditation – practiced faithfully every day, for over three years. And I am working on being more like Lucile Fray.
Allie never read the letters I wrote to her. When I told her about them, she said she was relieved I hadn’t given them to her. My greatest worries – not being there for the most important occasions in her life – have been proved untrue.
I was there in 2014, when Allie and J were married on a wide green hilltop overlooking an antique red farm in Vermont, feeling happy and well.
And I was there last October, when Allie went into labor with her first child. As Jake appeared – blonde, with a widow’s peak and a rosebud mouth, like his mother – I clasped hands with J, smiling through my tears, relishing messy, beautiful, unpredictable life.
When Allie came home with J for my sixtieth birthday, she read me the poem she most associated with her childhood, E.E. Cumming’s ‘maggie and milly and molly and may’. I often read it to her. She had gathered a few objects for the occasion, bringing some with her from Vermont, rooting around in our basement for the others. We sat next to each other on the antique Parson’s bench in our great room in front of the windows surrounded by tall, darkening trees. Allie had to compose herself before she could read.
‘maggie and milly and molly and may
went down to the beach (to play one day)’
Allie cried as she handed me a seashell.
‘ and maggie discovered a shell that sang
so sweetly she couldn’t remember her troubles, and –’
As she read, stopping several times in sobs, she handed me more objects – a star fish, and a ‘smooth round stone/as small as a world and as large as alone.’ And I saw, through my own tears, the terrible weight of all my darling daughter had carried during those awful years away, and her wrenching gratitude that her mother had lived. That whatever we had lost along the way ‘(like a you or a me)’ had truly been found.
Photograph © satanoid
