I had imagined that everything would move at light speed once I got the call for my lung transplant. Instead, it was a peaceful wait of about 23 hours in the hospital. I pondered what I wanted my “last” meal to be (strawberry yogurt, nachos, rice), tried to be present with my parents, scrolled through encouragements on my social media, and wrote an advanced directive along with wishes for my funeral and possessions.
I didn’t know if I would survive the transplant surgery. Doctors said that if I was put under anesthesia, I likely wouldn’t be able to come back unless the surgery was a success — I was that frail. Yet, yes, I felt at peace. I’d had several months to come to terms with my morality and to see the beauty in dying. In the moments leading up to my transplant, I also imagined the beauty to be found after death.
In an iPhone note, I outlined my ideal funeral: a celebration of life, an invitation for people to come together and remember the good times. I asked that the food be top-notch and that people share a funny story about our time together. I asked to be turned into a tree rather than stuck in a casket because I want my death to introduce life. I ended the note by asking that my possessions be given to any friends in need, with specific books assigned to specific friends. Then, I texted my girlfriend about where to find my instructions.
The kind of life worth dying for
When septic shock nearly killed me the previous July, I woke up realizing I’d mostly lived in bitterness. When put to sleep before my transplant, I closed my eyes knowing I’d done my best to make amends and love others. Death shuffles your priorities, and I’m grateful I’ve had the chance to dive into those priorities both shortly before my transplant and after.
In the following years, I leapt at any chance to attend funerals, even for people I didn’t know, out of desperation to remember those priorities. Eulogies clarify what matters in the end: not nice cars, clothes, or riches, but character, contributions, and emotional legacies. I’ve attended funerals for people who lived in bitterness, and I saw that they left behind wounded people. It hurts to realize that could have been my funeral. On the other hand, I’ve attended funerals for people who pursued love, and I saw the love inspired in their wake. I want that.
A funeral worth attending
Two years ago, I attended the funeral of my beloved friend and supervisor, Serena Lawrence. I lived near San Francisco but the funeral was in Toronto, so it was logistically complicated to attend and I’d shamefully wondered whether the trouble was worth the trip. But the moment I walked through the big, heavy doors, I knew I’d entered a sacred space. Everyone wept, but in a warm kind of way I can’t quite nail with words. It was clear she’d left impressions of love.
As her casket passed me, a punk rock song played. It was one of her favorites she’d shared with me months back, and I’d told her I thought the song was trash. But as that casket passed me, well, music never touched my soul quite like that. She would have laughed at me for crying during that song. No, it wasn’t “funeral music,” but it was her music. It was good and right that her march from this world was in step with screaming guitars, not organ pipes.
A few hours after the funeral I visited Niagara Falls with Pulmonary Fibrosis News columnist Charlene Marshall. We wandered aimlessly, stunned by Serena’s death and reflecting on how we wanted to project more of her magic into this world. We stood next to each other as the freshwater seas fell from those cliffs. I was grateful that the mist made everyone’s face wet — mine was just a little saltier than most others’.
Flipping out my phone, I added to my funeral instructions: “Make sure there’s good music.”
Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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