A wave of grief can bring sorrow, but also joy

I was sound asleep at 3 a.m. on Nov. 25 when I heard my mother call my name. It didn’t sound like she was in distress; it was more like she needed help reaching something on a shelf in the next room. After I awoke, I had some trouble processing this. My mother passed away on Nov. 26, 2020.

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, it was a surprise. For more than a year, I had attributed my cough to allergies, which I now realized wasn’t the case. As my disease progressed, my mother was with my wife, Susan, and me for every step of our journey until her passing.

I don’t know why I heard my mother’s voice. Grief is funny like that. However, it did happen near the anniversary of her passing, and I’d also recently returned from the Pulmonary Fibrosis Foundation (PFF) Summit.

During the summit, as the cadre of current and former PFF ambassadors gathered, we shared stories about those who are no longer with us. Because the event convenes only during odd-numbered years, it was our first time seeing each other in person since the 2023 summit in Orlando, Florida.

These stories introduced newer ambassadors to those who had passed. None of the stories was sad, though, as I observed smiles among the listeners.

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Dealing with grief during a season of joy

There are no rules

Grief is not bound by time, seasons, lunar cycles, the calendar, or any other measurement. I have suffered loss in my life. My father passed in 1992, and my stepfather in 2021, the year after my mother.

Shortly after I received a bilateral lung transplant in July 2021, I was anxious to communicate with my donor’s family. My friend Jim Carns, a lung transplant veteran who’s had two single-lung transplants, urged me to wait. His words, “Grief lasts longer than joy,” were not lost on me.

I have come to understand what it means when people say, “Grief washes over you.” Imagine waves that arrive without warning and overwhelm your senses. There are days when they pass almost as suddenly as they arrived. Other days, they linger longer than expected. When I heard my mother call my name, grief washed over me, and I didn’t rest well the rest of the night.

Then there is the grief I anticipate every year. On the anniversary of the date and time when I received the call that lungs were available for me, I visit the National Donor Memorial in Richmond, Virginia. As I approach the entrance, I can hear the water cascading over the memorial, where donors’ names are carved into the walls. I grieve for my donor and my donor’s family. The memorial is where I feel closest to them.

All in good time

For those of you on this pulmonary fibrosis journey, you’ll experience grief and deal with it in your own way. I can’t tell you what steps to take, as what works for me may not work for you. When grief becomes heavy and dark and feels like it’s consuming you, I recommend you seek counseling. Therapy was certainly helpful for me.

Personally, I don’t want the grief I experience to stop. It may sound odd, but grief can bring joy, and memories that make me smile are refreshed.

I miss my mother. She always told me I wore my heart on my sleeve, and I know she would be extremely proud of what I am doing today and how I 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.