Moments at the intersection of grief and celebration

This has been quite the week. I can sum it up in one word: grief, which must be one of the most unpredictable emotions we experience.

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I made a conscious decision to “be positive in all things.” I wrote those words in a block of capital letters in my journal, and I believe I’ve done well in staying true to them.

Unfortunately, grief has shown up at points on my journey. I expect it to show up every year as Mother’s Day approaches, since my mother passed away on Thanksgiving Day 2020. While I think of her every day and celebrate her on Mother’s Day, I still feel grief. She was my biggest fan and prayed that I’d receive a lung transplant. She passed away about eight months before I got one, thanks to a gift from an unknown donor.

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Being part of the pulmonary fibrosis community can also be a catalyst for experiencing grief. I’ve mourned the passing of friends whom I’ve met along my journey. Sadly, this past week brought another loss, squarely in the days approaching Mother’s Day.

I met Keith and Lorna Boyle about four years ago, when the three of us became members of the Pulmonary Fibrosis Foundation (PFF) Ambassador Class of 2020. Keith and I were both IPF patients; Lorna was a caregiver. Keith’s diagnosis was in March 2017, less than two months after mine.

Shortly after the ambassador announcement, the three of us were scheduled to meet in person at the PFF meeting in Chicago. Our class, however, was formed during the COVID-19 lockdowns, so our Chicago gathering and training were shifted to Zoom meetings. I knew Keith and Lorna from those events; they had unmistakable British accents even though they lived in Southern California.

The ambassador assignments could mean we’d speak to a support group, a class of future medical professionals, or a medical conference. I didn’t meet Keith and Lorna in person until last year, at the PFF Summit in Orlando, Florida, that November.

A patient advocate’s contributions

Keith shared his journey openly. In addition to his role as an ambassador, he was active on social media, especially in groups dedicated to pulmonary fibrosis. He was quick with words of encouragement for those new to the journey as well as seasoned veterans.

Meeting Keith and Lorna in person went exactly as I’d expected. Keith was larger than life, yet I felt we’d known each other for most of our lives. He gave me a coin commemorating lung transplantation. I keep it on my desk.

Keith’s journey took an abrupt turn on April 22. He entered the intensive care unit at a local hospital to be stabilized so he could be transferred to his care team at the University of California, Los Angeles.

But despite the extraordinary efforts of his care team there, Keith passed away last week.

He made a difference for others. He didn’t let this disease stop him from living. In fact, he and Lorna set out by car to see the country. He shared his patient experience while on this journey.

With perhaps the exception of Lorna, I don’t know if anyone can know the number of lives Keith touched during his time with IPF. He made a difference for the community.

Grief is an individualized emotion. For my part, I prefer to celebrate a life well lived. I celebrate my mother each year as Mother’s Day approaches. I wanted to share a little about the life that Keith Boyle led in hopes that you’ll join me in celebrating his life and all that he gave to the PF community.

Like Keith, I want to make every breath count.

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.