Exploring the gift and the mystery that is life
Poet and author Rachel Jamison Webster is a teacher at Northwestern University in Evanston, Illinois, and Solo Mom to daughter Adele. In a candid and moving conversation with ESME, Webster discusses her experiences as a caregiver for her late partner, Richard; her powerful love for Richard and Adele; and the healing mystery of art.
Q: You were widowed in 2011 when your partner, the writer and musician Richard Fammeree, died of ALS (amyotrophic lateral sclerosis). In a moving essay in Drunken Boat, you discuss his illness. What did you and Richard know about ALS when he was first diagnosed?
A: I knew about ALS because one of my best friends from childhood is a chaplain. She had referred to it as “the worst disease of all” and had called me crying after the death of one of her ALS patients. I knew that the person remains conscious as his body undergoes an incurable paralysis and that the victim only dies when his muscles can no longer open his lungs and he suffocates. I knew enough to know that we did not want a diagnosis of ALS, so of course there were a few weeks when we were hoping and praying that it would be anything else.
Q: ALS is a devastating illness, and you effectively became a Solo Mom as Richard’s disease progressed. You also stepped in as his caregiver. So that ESME readers can better understand the experience of being a caregiver, would you mind sharing what it was like to be a caregiver and Solo Mom? Do you have any advice for Solo Moms acting as caregivers for loved ones?
A: It was awful. I spent three years afterward writing a memoir of the experience to clear it from my body and mind, and even if someone read that hulking, unabridged volume, I still don’t think they’d get the full sense of how difficult it was, hour to hour, day to day. I know that many people are single mothers and caregivers, and I am amazed by what people go through, by the heft and the challenge of that. I went directly from waking up in the night with a nursing infant to waking up in the night with a terminally ill partner, so for four years I never slept more than three hours at a time. I had to support us, as well, so I kept teaching while parenting and caregiving, and every moment of my day was given over to taking care of others. (I didn’t see a movie for five years; I went to a restaurant twice in three years; once, I remember I had an hour to myself, and I did not even know what to do so I just wandered around Walgreens looking at magazines and makeup, wanting nothing.) It was a gradual erosion of my own needs, until soon I couldn’t even tell you what they were. We needed additional caregivers in the house at all times, and that was difficult for me as a writer and someone who needs some quiet and solitude.
Richard was very strong-willed, and he did everything he could to remain independent, but within months of his diagnosis, I was spoon-feeding him, lifting him to standing, bathing him, and massaging him to keep his muscles functional as long as possible. I was also deeply grieving our happy life together and the future I thought I would have, and I had to do that emotional work privately because the caregiver’s needs really do recede and become invisible during these times of mortal extremity.
It helped me to meditate and to write just a few lines in my journal every day, to glean some consciousness and meaning from the experience, and to honor what we were learning about love. I became much more spiritual and reverent during those years—out of necessity—and although they were the most difficult years of my life, they were also purposeful and luminous. I felt our strength and also how fragile we were. I felt the wonder and paradox of birth and death. You realize that positivity and generosity—little acts of mercy, humor, love—are what make the unbearable bearable. And as we lost everything that we thought our life would be, I had the sense that we were being tempered into more conscious and compassionate beings, being shaped and sustained spiritually.
It also became absolutely necessary for us to learn to accept help. We had been smart and generous and self-directed, but we had to cultivate the generosity of spirit, or just the humble grace, that would allow us to receive. Richard became dependent on me as his caregiver, and we both became dependent on friends who came every week to help out, on our landlords who would take Adele so we could have some time alone, on nurse’s aides whom we hired to help me lift, bathe, and feed Richard. I learned to be more deeply and necessarily in community during those years, and I have continued to need and appreciate community as a single parent.
This leads me to my only advice to caregivers—that they see their experience as meaningful—even if it is totally unchosen and torturously uncomfortable. Admit to the discomfort, and also try to recognize this as a deeply important journey of awareness, an opportunity to honor and access your deepest wells of strength, compassion, service, faith—or simply try to achieve a kind of equanimity amid the buffetings of life. Also, allow yourselves to ask for and receive help and to ignore whatever seems insensitive or irrelevant to your situation because you know it best. You know the daily grind of it, as well as the deeper journey it represents.
I got a lot of advice during that time—that I should just put Richard in a nursing home, that I should hire more help, that I should order this new, potentially curing detox aide—that was coming from a more privileged position, from people who had a totally different reality in terms of time or money, and that hurt more than helped me. The friends and family whom I am enormously grateful for did not usually try to advise or “fix” the situation, but rather just had the generosity and presence to be with us. One friend sent us an anonymous delivery of groceries, just when our money was almost running out. Others came to help one evening a week so that one day we didn’t have to pay a nurse’s aide. Others just knew not to get offended when I couldn’t be in touch and sent me loving texts saying they were thinking of me. I was grateful for those who could be present with difficulty and could recognize that we were living, even while he was dying, that this was our life, and I didn’t want to send him away. I didn’t want it to end any sooner than it had to.
Later, at the very end, I did have to send him to a nursing home, and people helped me with that, too. My daughter had gotten sick at that point and needed surgery, and they helped me to see that we were at the end of our reserves. But they didn’t judge. One of my best friends helped me to let go of my goal of being the perfect caregiver because she was herself a single mother, and she talked to me about the fact that I was going to need some strength, some resources just to go on as a single parent.
Q: How old is your daughter now? Can you tell us about your journey as a Solo Mom since Richard’s death?
A: My daughter, Adele, is eight now. She’s a warm, happy child who dances, plays piano, adores her friends, writes for the school newspaper, and loves doing science experiments. A sweet, strong-willed third grader!
Single parenting is much trickier than people imagine. Even little things, like the fact that you can never run out to pick up groceries or medicine after your child goes to bed, that you have to arrange sitters or playdates with the slightest schedule changes at work. I spent years shadowed by the life I thought we’d have, enjoying my life as a mother, but feeling like we had somehow found ourselves in a collapsed reality. I didn’t think I would be a single mother, and I didn’t think that I would only get to have one child, and this sense of what was missing, this grief, made me a wearier parent than I would have liked to have been.
But this spring, I looked at all of the pictures of Adele and me on my phone, and I realized that we have been living—feeling joy, having adventures! In the last two years, I have even been cultivating a very loving new partnership and long-distance relationship with a wonderful man. I had an aha! moment of realizing that this is my life and feeling a kind of swelling gratitude for my daughter, the people in our lives, and the experiences we have been able to have. These years of single parenting have helped me to know my own strength and to experience a sense of freedom and self-trust in parenting. They have also allowed me and my daughter to enjoy some really deep one-on-one time of growth, healing, and appreciation of one another.
Q: What is the status of Will: A Journal of an Illness? I read excerpts in the online magazine The Grief Diaries (2015) and was deeply moved. Will that work be published in another venue?
A: Thank you! Yes, that is the memoir that I mentioned earlier. My agent and various editors I showed it to suspected that it was too long, too much time to spend in such a dire, tragic space, and so I have turned the journal of the illness into a long central essay in a book of essays that follow a decade of my life—my 30s—in which I knew the joy of living on the island of Kauai and experiencing early motherhood, the pain of watching my beloved die of a terrible disease, and the surprise and grief of raising a daughter alone. These essays have been collected into a book called Double Vision. It is with my agent now, and I hope it will be published in the coming year or two.
Q: In Will: A Journal of an Illness, you mention that you and your daughter planted a birch tree in Richard’s honor, surrounded by stones from places he loved. Are there other traditions or rituals that have been a comfort to you and Adele in the wake of your loss?
A: Yes! Richard loved to walk Adele at the park on Lake Michigan in our town of Evanston, Illinois. He was a stay-at-home dad, and he would take her every day to the playground and would sit reading or writing poetry on a bench looking out at the water. We have been able to buy a bench there as a memorial to him and will be dedicating it to him in the coming month. We will probably gather with many good friends who loved Richard and helped us during his illness. We will celebrate his life, and the love and community that he was always creating among us.
I also think of the writing I have done about Richard as a memorial, and doing that certainly helped me to remember and honor him. He also wrote many beautiful songs in his life that I will share publicly in conjunction with the book.
Q: Tin House describes your poetry collection, September (2013), as “an exciting first book that takes the insane and nonsensical experience of grief and gives it a celebratory language.” How would you describe how your journey of loss and recovery has informed your work?
A: I love that they picked up on that “celebratory” sense of wonder. This entire experience has increased my ability to perceive the brightness of life. It has made me appreciate the marvel of an ordinary day. It did this not because it was grief, but because it was love. I loved being in a family with Richard and Adele, and then when that experience became so fleeting, when I realized it would be such a short-lived sweetness, I paid close attention to it and to them. I did not take any aspect of our lives for granted. The very process of ALS, in which a person gradually, incrementally loses what they can do, forces one to love and to value the other not for what they do, not for any expectations of the future, but for who they are. This sense of essence, of who a person is, is their soul. And those years of difficulty, loss, and extremity did tutor me in the power of the soul. We are much more powerful than we realize—more connected to others than we know and also more mysteriously, singularly ourselves.
Q: How has your work and art informed your parenting, do you think?
A: I feel most alive when I am making something of my time, and for me, that includes a making of meaning, experiencing the shapely integrations and discoveries that come through writing. I am happiest when I am writing, and so if I can write every day—even a little—I can be more awake and present with my daughter.
In much of my nonfiction, Adele is a voice of wisdom. Throughout Richard’s illness and throughout my memoir, she saw and said things that he and I were not ready to admit to. She was the first to say out loud that he was going to die, for instance. She just felt it, though he and I were still in a frantic state of denial about it. She was only three, but she already had a grounded sense of reality.
Casually recording what Adele does and says and then revisiting those moments in my more polished writing has allowed me to honor her perceptions, her strength and sensibility. It is also just fun to note the moments of humor and synchronicity that happen with children. In daily life, we can spend so much time managing them—getting them to put on their shoes, remember their backpacks, finish their homework. I enjoy writing because it allows me to keep space for the more integrative, soulful, and mysterious side of parenting, that place where you feel that you and this little person are together for a reason, on a wondrous, weird, sometimes treacherous but altogether glorious journey.
Q: Your most recent book, The Endless Unbegun (12 Winters Press), came out in 2015 and has been described as a poetry/prose hybrid. Do you think this book represents a new direction in your work? If so, how?
A: It is just one of several directions my work will take. I wrote most of it before I wrote September, and have always written in several styles and composed more than I have published. Some of my work is very honestly, transparently based on my life—like the essays. And some of it is more mystical and imaginative—based on the intuitive, metaphorical space that cannot really be narrowed into the literal. The Endless Unbegun is about love and tries to track the more prosaic way of knowing someone versus the more timeless, poetic way. It lives somewhere between fiction and poetry because several of its sections are taken up in other, fictional voices.
I will revise and publish the essays of Double Vision next, and then, after that, I have a couple of imaginative books that I want to finish. I think I will always move back and forth between poetry, creative nonfiction, and short hybrid-form fiction. I will always be exploring the gift and mystery that is life.
Janice Deal is a writer, an editor, and a lover of found objects. Her short-story collection, The Decline of Pigeons (Queen’s Ferry Press, 2013), was a finalist for the Flannery O’Connor Award for Short Fiction. Her first novel, The Sound of Rabbits, was recently named a finalist in the Many Voices Project Prose competition. Janice lives in Downers Grove, Illinois, with her husband, daughter, and three disreputable cats.
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