by Joanne Tubbs Kelly
She Writes Press (2022)
Walking Him Home is an account of what it’s like to have a neurodegenerative disease and reach the point of wanting to die. Most approved prescriptions for medical aid in dying are written for persons with cancer, whose six months prognosis is easier to determine.
Joanne Tubbs Kelly describes the dying of her husband, Alan Kelly, from multiple systemic atrophy (MSA), a rare condition of the nervous system that damages the nerve cells in the brain and leads to a loss of balance, gastrointestinal issues, and incontinence. At the end, one cannot get out of bed without a mechanical lift. Everything that has physically defined one’s life is gone. We watch this progression on every page, loving that Joanne and Alan care for each other and hating that there is so much suffering.
Joanne and Alan found each other late in life, after previous marriages, and hoped that theirs would never end. The first chapters of the book recount their life together. Joanne was a successful corporate executive. Alan was a salesman who decided after they married that he’d rather be a handyman. He was outgoing, talented, and self-motivated, and had many clients. He did not mind that Joanne was smarter. “I like smart women,” he said.
When Alan could no longer endure the loss of the ability to do the things he loved, he asked Joanne to help him die. They were Colorado residents. Colorado authorized medical aid in dying in 2016 and he needed Joanne to arrange the appointments that would be needed to have his request approved. His doctor had admitted him to hospice which satisfied the requirement that his life expectancy was less than six months. Joanne was deeply conflicted. Alan was only 69 and she wanted many more years with him. She didn’t, however, flinch. She knew that it was what he wanted. This dilemma is central to what every couple must face when one of them wants to use medical aid in dying: how does a family member summon the strength to help a loved one leave, when that person’s leaving is the last thing one wants?
The book tells us how. Joanne took care of herself. Throughout the duration of Alan’s illness, she saw a therapist. She made time for herself once a week to be alone. She kept a journal, and when she saw that a book might be emerging, she joined a writing group. The result is an engrossing memoir of two people deeply in love, and could be read for that reason alone. Joanne describes the challenges of dealing with a debilitating illness, the clinical trials they sought, and the doctors who disagreed with each other. She describes misunderstandings that can happen in an assisted living facility. Choosing the date on which he would die, as Alan did, made the ending definite. It is very different from sitting beside a hospital bed with intravenous tubes and ventilators, providing the hope that life will go on, and maybe even get better.
Alan’s final day was the way he wished it to be. Joanne, their children, a few close friends, and their minister were present, with a Willy Nelson song playing in the background. They redeclared their love for each other. Everyone had a chance to say goodbye, as had many others in the preceding several weeks.
Since Alan’s death in 2020, Joanne has become an advocate for medical aid in dying. She has an online blog to which anyone may subscribe: joannetubbskelly.com/blog, in which she discusses diverse issues such as how death doulas can be helpful, how Canada enacted its law, what dying in the Netherlands is like, and issues that arise for disabled people. It is published once a month.
Those who have read Amy Bloom’s memoir, In Love, will notice some similarities. Bloom’s husband and Alan were both vital men who loved their intelligent wives. They both sought their wives’ help in ending their lives. They both had younger brothers named Paul who died early. They both died in January 2020 and had their memorial services on February 8, 2020. They are both now the subjects of important books. Joanne Kelly hopes that the appearance of the two memoirs so close together will be helpful to others as they navigate whether or not to choose medical aid in dying.
Review by Susan Gillotti, PCV Board member