Reflections on the loss of a mother, stepsister, and friends

My mother passed away in the final hours of Thanksgiving Day three years ago. Just a week before that, I lost my stepsister, too. Understandably, it was a time of deep loss for me.

At the time, COVID-19 was spreading at an alarming rate, so, like many others, I couldn’t travel to mourn the loss of my loved ones. I attended both funerals virtually, and because I am the oldest of three sons, I delivered Mom’s eulogy.

Today, as I approach the anniversary of their passing, I feel like I can finally celebrate their lives.

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, many unknowns lay ahead. I was just starting to learn about the different aspects of IPF.

My stepsister Judy had spinocerebellar ataxia type 3 (SCA3), a genetic neurological disease that her mother also had. There is no cure or therapy for SCA3. My mother, Betty, a cancer survivor, was in relatively good health at the time of my diagnosis.

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My mother was learning about IPF, primarily through discussions with me. She had always been a problem solver. She wanted to give me one of her lungs, which we would later learn was not a viable solution. Mom wanted me to get better, regardless of any personal sacrifice she had to make.

Judy knew I was sick, and that it was not like her disease, which was beginning to progress more rapidly. In the years following my diagnosis, her husband, Michael, cared for her and spent much time in nursing homes.

The effects of the pandemic made me angry

Being unable to gather with family and friends to celebrate the lives of these two women was difficult. My family couldn’t postpone the funerals until it was safe for me to travel or be among others. I was angry.

As an IPF patient, I was already isolating at home. A face mask was routine for medical appointments. My wife, Susan, took care of the activities outside our home, such as grocery shopping and running errands. We placed a sign on our front door advising people to call because we were in quarantine.

I wasn’t the only one robbed by COVID-19. And I’m fortunate to have a platform where I can share my grief now that I’m ready to write about it. Many people have stories like mine, including in the pulmonary fibrosis community.

I also wasn’t able to attend the funerals of friends who were lost to this disease. One friend I had made online shortly after my diagnosis was Glenda Rouland, whom I later met in person at the Pulmonary Fibrosis Foundation’s 2019 summit in San Antonio, Texas. She passed away shortly after receiving a lung transplant. Paul Hillyard, whom I met at the same summit, succumbed to COVID-19 during the pandemic.

As I write this column, I am on a flight bound for this year’s PFF summit in Orlando, Florida. I will gather with mutual friends to remember Glenda and Paul. And in the 10 days following the publication of this column, I will remember the third anniversary of the passing of my stepsister and my mother. I know they loved me, and my love for them is boundless. I know they both would have celebrated my bilateral lung transplant just six months after they passed away.

I am not letting go of my grief, but it is changing. I still remember the family and friends I have lost during this journey, especially those whom I could not properly mourn. I have come to accept that mourning has been redefined in this era of COVID-19.

Sharing this with you now helps me to acknowledge loss and is an opportunity to invite you to think about what you missed during the pandemic. Last week, I wrote about gratitude. On Thanksgiving Day this year, I will remember those I have lost, as well as my donor and their family. For them, I will continue to make every breath count.

I invite you to share a significant life event you missed during the pandemic that you may have struggled with in the past. If you feel compelled to do so, please share in the comments below. 

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.