Lessons on death and grief, a commonality in our communities
In the CF and transplant communities, grief is ever present
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Living with cystic fibrosis (CF) and having a double-lung transplant six years ago has naturally solicited some internal rumbling regarding my own mortality.
When I joined the chronic illness community a decade ago, I didn’t expect that the friends I had made would die so soon. We often tend to avoid the topics of death and grief because they’re too painful to face. But death is real, and talking about it helps us understand that we’re not alone.
Aug. 30 is National Grief Awareness Day, and as the date approaches, I’m reminded of the grief I continue to carry every day. Over the years, I’ve learned that we never stop grieving, because love never ends. Grief is the price we pay for having relationships.
Even as I write this, friends of mine with CF, some who’ve had transplants, have died in the past few weeks. It never gets easier to process.
Many people I talk to outside the chronic illness world can’t relate to having so many friends die prematurely. But this is the reality of life with chronic illness and one of the many factors that sets our community apart from the rest of society.
No one is promised tomorrow, but something just doesn’t seem right when people die at such a young age. There’s no easy answer to alleviate such heartbreak over lives that are lost.
How death has changed my perspective
Losing friends to the same health circumstances I live with is a heavy burden. I’m not immune to the tragedies of this life. It’s a sobering reminder that we have only the present moment. This motivates me to pursue the dreams in my heart today instead of waiting for the perfect circumstances to do so.
The death that hit me hardest was my best friend Shaun nearly two years ago. He had both CF and a double-lung transplant just a year before me. Shaun, who was like a big brother to me, took me under his wing and coached me throughout the entire transplant process.
I had the honor of being with him the day he died. The memory of those final moments is forever burned in my brain. On some days, it still doesn’t feel real that he’s gone.
Can’t we just admit that death is hard to wrap our heads around?
Despite the pain of losing Shaun, his legacy continues. He brought people together whose paths never would’ve crossed had we not known him. He was also great at regularly checking in with people he cared about. He has inspired me to live a life that utilizes all the gifts I’ve been given, because he did it so effortlessly. He reminds me to cherish the time I have left with those I love.
I’d give anything to have one more conversation with Shaun and laugh about how ridiculous our lives are. We’ve lived through things that should’ve killed us. My tears now remind me how precious and short life really is.
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.
Comments
Kathy Gunter
Your words hit home heavily. I'm sure we all understand - I lost my own sister many years ago and my best friend nearly 20 years ago and the grief just lays there heavy, forever weighting down the spirit. Recent grief from the loss of my "BABY" (a cat who was my constant companion) and seriously aging, dying parents makes me almost motionless. Sometimes it really does feel like too much. Due to the time and energy I have given to my ailing family, my own health is slipping - fast. But, somehow death for me seems like a comfort on its way. I'm tired. Tired of fighting this disease with no help in the near future (I have rare mutations not eligible for the new "miracle" drugs) and tired of all the loss of this world (not to mention all the hate). I am praying (when I can muster to put the thoughts into intelligible words) for Him to uplift me from this deeply dark place I can't seem to escape. Meanwhile, I am managing to go through the motions (still eating, still doing treatments and taking meds), but any kind of joy feels so far away. I know I have more death of loved ones on the near horizon.