Dealing with grief during a season of joy

Good grief! When I hear this two-word phrase, I often associate it with the cartoon character Charlie Brown. Otherwise, the words “good” and “grief” seldom seem to belong together.

What do you do with grief amid the holiday season? If you’ve been reading my columns for some time, you may recall that my mother passed away on Thanksgiving Day 2020. When she died, COVID-19 was a real issue for those with compromised immune systems and respiratory issues, including those of us diagnosed with idiopathic pulmonary fibrosis (IPF).

This year on Thanksgiving, my friend and fellow warrior Melissa King passed away at the Cleveland Clinic. If the title character of “Xena: Warrior Princess” had a role model, I suspect it could’ve been King.

I introduced you to King in a September column. Her passing caught me off guard. I wanted to believe her positive spirit and infectious joy would carry her through her journey until she could receive a transplant. That wasn’t the case.

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April 14, 2023 Columns by Christie Patient

Unpacking the emotional layers of transplant: guilt, gratitude, and grief

All our losses

The amount of loss we experience in the pulmonary fibrosis community can be overwhelming, and when grief intersects with joy, guilt can result. In the transplant world, for example, we grapple with the survivor guilt phenomenon. Those who receive a lifesaving organ transplant from a deceased donor know that for them to live, another person died. I interviewed two donor families, and they wanted the recipients to live their lives to the fullest extent possible.

I believe there’s another side to this guilt: While we get to survive, we have to deal with those who don’t, such as my donor and King. As a post-transplant patient who received the gift of life thanks to my donor, I committed to taking the best care of my lungs. But still I wonder: Why did I get a second chance?

Each transplant candidate is on a unique journey and has a unique profile for the donor organ that’s needed. The factors that go into matching available organs with potential recipients are many. My transplant case was anonymized, providing no more than my medical condition and the criteria for an organ match. That match is sought based on the known donor data and the organs available. I’m oversimplifying the process, but it explains how, from the moments a donor’s organs are identified, the search is on for the patient with the greatest need at that time.

In each of these losses, I chose to celebrate their lives, even during my sadness. I couldn’t travel to my mother’s funeral, but I could deliver her eulogy via Zoom to celebrate the difference she made in the world.

Melissa King’s passing made me sad. I’d been witnessing her journey for at least four years. She cheered me on when I received my bilateral lung transplant. I walked with her, staying close during the most difficult parts of her journey this past year.

Maya Angelou, an American poet and activist, wrote a poem titled “When Great Trees Fall” in 1987. I encourage you to read the entire poem, but I wanted to share the last stanza, a part that resonated with me at this time, as grief is turning to joy. It reads:

“And when great souls die,
after a period peace blooms,
slowly and always
irregularly. Spaces fill
with a kind of
soothing electric vibration.
Our senses, restored, never
to be the same, whisper to us.
They existed. They existed.
We can be. Be and be
better. For they existed.”

The PF community gets its fill of recurring loss. It’s OK to be sad, but then listen to a story about them you’ve never heard before, learn something new about their life, share a favorite story about them with others. Celebrating a life is how we can make every breath count.

The 2024 National Tree of Life Ceremony will be streamed on Facebook at 6:30 p.m. ET on Dec. 16. Please join me for this remembrance of donors in 2024.

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.