As an oncologist, I had cared for patients facing grave illness and death. I imagined the loss of loved ones and expected grief to be an unbearable sadness, most poignant in the earliest days and lessening with time. I somehow expected that counseling people who grieved would make me more prepared. When my husband Dan died at age 42 years, I realized that I had no idea how grief felt. It was surreal and disorienting, I was displaced from a life that made sense into a new reality, one my mind acknowledged but my heart and soul would not accept.
Dan’s initial diagnosis offered a glimpse into a different life. It was unsettling but included us both. When we were newly engaged, Dan abruptly lost vision in one eye quickly followed by the other. I vividly remember the dark, neuro-ophthalmologist’s office in New York City where I was a resident. I sat next to a young medical student who appeared fascinated as my 31-year-old fiancé—who did not yet appear blind—struggled to count fingers or the big E projected on the wall before us. As unremarkable magnetic resonance imaging, spinal tap, and laboratory results were posted, rare disorders floated into the differential. Dan had a mitochondrial disorder. My fiancé had transformed into a medical student case study.
Shannon MacDonald, MD
A Life-Altering Diagnosis
It is not possible to understand the impact of a life-altering diagnosis until you are on the receiving end. How dramatically life can change in an instant. How painful the guttural yearning to go back in time can be. Dan and I both came from healthy, loving, families and had a close knit and fun group of friends. Dan had an MBA and ran a family company. I was a doctor in training. We lived active, full lives with plans for our future. We had no medical problems, and although aware as an oncologist that a medical diagnosis can derail a healthy young person’s life, we or I never thought this could happen to us.
In the weeks that followed Dan’s diagnosis, his vision deteriorated. We retreated into a world that included just us. We moved our couch just a few inches from our television. I read menus to Dan at restaurants, and he corrected my mispronunciation of ingredients. I took over as our driver despite being a city dweller with little driving experience. We got handicapped plates, a cane, researched seeing eye dogs, and had a conversation that abruptly ended when I uttered the word “Braille.” One night when I asked why he could not fall asleep, Dan answered, “I am afraid I won’t be able to see your face when I wake tomorrow.” We left the lights on and did not sleep that night.
Fortunately, Dan’s vision loss was not complete and, although painfully slow, he recovered some of his sight. Over time, he reintegrated into his friend circle and work with adaptions and the help of a low vision clinic. We were grateful throughout. Dan was an avid skier and was able to ski again once he realized that muscle memory was more important than vision. With time, he no longer appeared blind. He gained the confidence to return to contact lenses, which allowed him to remove his glasses and sunglasses that hid his eyes.
Complications, Challenges, and Unspeakable Loss
Dan had to face additional challenges. He developed bilateral avascular necrosis of his hips from the single dose of steroids given to him when multiple sclerosis was thought to be his diagnosis. This led to bilateral hip replacements and a year on crutches. This experience taught me to appreciate the subjective nature of function loss: I had perceived vision loss would have the most profound impact on his quality of life, but undergoing hip replacements and loss of mobility were unequivocally worse for Dan. In fact, this triggered such emotional distress that
it challenged our relationship more than ever. Anxiety dominated over depression, and rather than medication, Dan used alcohol to soothe his pain. Over time, with therapy and lots of tears, we accepted this life with appreciation for what is truly important and we learned to ignore the trivial. We grew closer than ever, and, for this, I will be forever grateful. I find comfort in the thought that we lived together with more emotion and a deeper passion for each other and for life.
Dan died of a sudden cardiac event during a business trip. When his dad called to tell me the news, I was doing yoga, and I recall him asking me “are you sitting down?” So, I kneeled on my yoga mat. I can’t recall how many synonyms for death he attempted before he was forced to say the word “dead” to make me understand what had happened. When I got off the phone, I quickly called my sister and bluntly said “Dan is dead” and then repeatedly apologized for not asking her if she was sitting before I told her. I was derailed. I felt utterly unprepared for a life without the man who provided me with guidance, confidence, and experience that I had not had on my own.
I never knew what true anxiety was until his death and would never again feel anxious about public speaking after giving his eulogy. I will forever be grateful for the people in my life who sat with me silently, fed me, and even slept in my bed in Dan’s place. They would later recall memories in those early disorienting days that I did not. After reading that people often sigh when grieving, I asked my friend Alice if I ever sighed. She looked surprised and responded, “Shannon, you cried softly and sighed all day long.” When I was disappointed that I never dreamed that Dan was alive or woke up having forgotten that he was dead, those closest to me said that I would wake in the middle of the night reaching for him, realize he was not there, and then settle back into some sort of sleep.
Finding Comfort in the Face of Grief
After his funeral, I became obsessed with determining exactly how he died, as if figuring it out could bring him back. The wait for final autopsy results was excruciating, but the findings of a hypertrophic cardiomyopathy likely related to his mitochondrial disorder was utterly unsatisfying. I remained convinced that if I had joined him for that business trip as I had planned to, I would have been with him, and he would still be alive. I still believe this. I also remember telling his father about my feelings of guilt, and he replied with both surprise and relief saying, “I feel so guilty too.” For months, I could not think of any future and preferred to live in the past. The sadness of missing him was more comforting than the thought of moving forward in a life that did not include him. Although I never thought of doing any harm to myself, I remember spending an hour convincing a patient to accept treatment for an advanced cancer only to walk out of her hospital room thinking that if I were her right now, I would do nothing and welcome death.
With the support of friends, family, and therapy and the passing of time, I slowly became more functional and was able to reintegrate into society. My grief morphed into anxiety and feelings of guilt when my memories of Dan became less vivid as if I was not honoring him enough. When I finally had the courage to pack his clothes to give to charities, I was saddened that it evoked less emotion because they no longer carried his scent. What I had thought of in the past as “moving on” and a healthy step in the grieving process was not a simple forward advance but came with a longing to return to a period of greater grieving. Moving on and making new memories made me feel disloyal, as though I was abandoning him. With time, I came to accept my new life that was so different than the one I had planned.
Eventually, I reached that place that Didion described: “I know why we try to keep the dead alive: we try to keep them alive in order to keep them with us. I also know that if we are to live ourselves there comes a point at which we must relinquish the dead, let them go, keep them dead.”1 But this took time, support, and a disciplined effort to change myself by reimagining my values and creating a new identity that did not include my husband or the children we planned to have together. My evolution aligned with the teachings of social scientist Boss,2 who refuted the idea of finding closure and instead posited that we must learn to live for a future that contains the loss. I learned over time to accept the discomfort it caused me to speak of him in the past tense. I could be true to myself; my identity was shaped by Dan but not in the present. I learned to say “I” instead of “we.” I accepted that my niece and nephews—and all my patients with pediatric cancer—would be the children in my life. I met a man and partner secure enough to be with a woman who speaks about a man she loves that is not him.
Grief is personal, and I am only an expert in my personal grief. I found the support from colleagues, family, and friends helped me, but they could not make me feel close to my old normal—only Dan’s return could have done that. I learned that some people simply could not acknowledge the loss and that in turn had a profoundly negative effect on our relationship. Even a card or e-mail would have sufficed, but silence created an awkwardness that was hard to bear. I was told by a co-worker that a colleague had tried so many times to say something to me but was too afraid that he would say the wrong thing, so he said nothing. Hearing this helped me understand how his silence was not because he did not care but because his fear of hurting me by saying the wrong thing was paralyzing. I also discovered that avoiding conversation that included Dan made Dan feel more dead. I would have preferred to speak of him, even if this made me emotional.
I learned to answer the “how are you” question by replying okay, as I could not lie and say “well.” When my nephew died, I texted my sister daily “How are you on a scale of 1-10?” She loved this. People said perhaps well intended but strange things, such as “don’t worry. You are young and will marry again.” and “you are lucky you did not have children and you will be a mother to somebody else’s children.” With these comments I heard, “Dan is replaceable” and “it is good thing that you don’t have a piece of him in a child you shared.” I recognized that I sometimes needed more space and that loneliness can feel unbearable. I had no way of predicting my needs, which made it difficult to plan ahead. I found it took years to work through my emotional pain and am forever grateful to those who believed in my ability to heal myself.
This article was original published in the Journal of Clinical Oncology, January 2023. © 2023 American Society of Clinical Oncology. All rights reserved.
Dr. MacDonald is a radiation oncologist at Massachusetts General Hospital, Boston.
Acknowledgment: To my friend and colleague, Alice Ho, MD, MBA, who gave me the courage and inspiration to write this piece.
Disclosure: No potential conflicts of interest were reported.
References
1. Didion J: The Year of Magical Thinking. New York, NY, Alfred A. Knopf, 2005.
2. Boss P: The Myth of Closure: Ambiguous Loss in a Time of Pandemic and Change. New York, NY, W.W. Norton & Company, 2021.
