The first image that comes to my mind when I think of “Cystic Fibrosis” is the scene of a little boy enclosed in a sort of medical bubble, being given percussion treatment, from the 1999 film The Cider House Rules. I was nine when the film came out, maybe a bit too young for the mature content of the movie, but my mother let me watch it anyway. Growing up, I didn’t know anyone who suffered from the condition, which seemed like a death sentence given to tragic figures such as the child in Cider House Rules. Children destined to grow into their early adulthood before dying. And they knew it.
Enter Allison Watson and her memoir Transplanted: My Cystic Fibrosis Double-Lung Transplant Story. Transplanted is the story of what it means to grow up with cystic fibrosis and to face the everyday reality of death and dying. Allison does so with a lighthearted charm and easy humour. She describes the painful details of medical procedures with eviscerating honesty. Her book focuses on the two years it took to wait for her transplant, receive new lungs, and struggle back to health and home. She is transplanted in another sense: because there are no transplant centres in Atlantic Canada, where she and her family live, she is relocated to Toronto to receive care. Her story chronicles the difficulty in being away from your home while you are devastatingly ill. It also has a sense of awe and adventure as Allison and her partner explore the city as much as they can in the time that they are granted.
Having two of your major organs completely replaced by the organs of another person seems like a surreal science fiction story. The fact that it is now medically possible (and successful) is a testament to the miracles of modern medicine. As Allison writes,
“Just as I grew up knowing that I had a fatal disease, I also knew that one day I might need a lung transplant. In the ‘90s, a lung transplant was still considered a new medical procedure: the first one done on a person with CF was in 1988.”
From childhood, Allison’s family knew that one day she would likely require this incredible surgery. Not only that, but her older sister would too. Out of three children, two girls of the Watson clan were both diagnosed with Cystic Fibrosis. It would be a devastating diagnosis to face for parents of a young child. It would be doubly devastating to have two children with the fatal illness. However, Allison describes the support and understanding that she shares with her sister as a normalizing factor: they are both active children and the fact that they need to take handfuls of pills, receive daily physiotherapy, and stay in the hospital for antibiotic treatments, is just another part of growing up together. Considering that most people with CF are required to be isolated from each other to decrease the chance that they will introduce germs into one another’s already compromised immune systems, it is rare that two CF patients would spend so much time in each other’s company. Their bond strengthens their ability to face the illness with determination and a fighting spirit.
Despite her chronic illness, Allison has a happy upbringing. She trains as a recreational therapist, a job she keeps until she becomes too ill to continue working. As her health deteriorates, Allison writes about the fears that begin to intrude on her consciousness:
“In fact, when I had pneumonia and was subsequently hospitalized in November 2012, that was the first time I had the physical feeling that I was dying. It made me panicked and slightly depressed. I had no energy, threw up all the time, and had a lot of back pain. It was terrifying to be that ill.”
Throughout the rest of her story, Allison details how the illness in her body affects her mental health. In some ways, the struggle to overcome the feelings of depression, anxiety, and reoccurring panic attacks is more immediate than overcoming the physical limitations of her body. Because we live in our minds and feel with our bodies, the two share an intimate connection that works symbiotically to compose us as whole beings. Allison has coverage for counselors to address her mental health through her work. She also receives incredible support from her partner, Isaiah, as well as her friends and family. She recognizes that this was essential for helping her to confront the reality that her body was in decline and she would need to accept that she needed a transplant, soon. She was in her mid-twenties. A daunting thing to face when your adult life has only just begun.
Once she is given the news that she will need a double-lung transplant, Allison details the waiting that ensues. She enters a limbo where she knows her health is in decline and will continue to decline. She is past the point where she can hope that her own lungs will ever recover from the damage that CF has caused. In Nova Scotia, she needs to wait for her body to reach a critical stage of illness before she can be transferred, or transplanted, to the medical centre in Toronto. Once she is in Toronto, she has to wait for a pair of lungs to become available. She spends a year on the transplant list, waiting for someone else to meet with the unfortunate circumstance of being an organ donor. To save her own life, she must wait for death to claim another. She has plenty of time to consider how death intercedes into our lives, in ways both good and bad. She writes,
“I figured we, as a society, spend so much time planning and thinking about what happens when someone comes into the world, we should spend at least some time figuring out what to do when a person leaves. The more I read blogs about dying and what happens to an actual corpse, the more comfortable I became.”
Having been to one of the many Death Cafes that are popping up across the country, I have seen how the fear of death can be mediated by open discussion of what happens when death enters our lives. It is the fear of the thing itself that can keep us locked into a state of unexpressed terror and grief. With new movements such as The Order of the Good Death and the push towards sustainable, or “green” burials, we are only now beginning to change our perspectives on what death and dying really mean. In many ways, death is bureaucratic. It involves a lot of paperwork and planning. When we understand the mundane character of death and dying, it becomes less mysterious, more grounded in the natural cycle of life.
Allison Watson receives new lungs, survives the transplant surgery, and chronicles all the messy and miserable steps towards recovery. Some of the details are hard to read. After surgery, she is immobilized and weak. Her body requires round the clock support from nurses and doctors to keep it living. Allison doesn’t shy away from sharing with her reader the very real, sometimes humiliating, experience of her body in extremis. Frequent panic attacks make painful medical procedures even harder to endure. But Allison makes it through to tell the tale from the other side. To quite literally shout her success from the top of the mountain, where she ends the book with her family, having scaled to the top of Gros Morne in Newfoundland.
Transplanted is a text that takes its reader to the furthest reaches of medical technology, to the brink of death, then back through the hard journey of sustaining the physical and mental resiliency it takes to heal a body that has been profoundly traumatized. What Allison calls “The seemingly continuous attempt of my body to die.” It reflects the transplantation of one pair of lungs into the body of another, in an Ouroboros-like maneuver of death creating life. Inside it’s pages, we can experience how stories transform us and heal us.