It happens far too often in the pulmonary fibrosis (PF) community: the unexpected and sudden loss of a fellow patient. I’ve lost some dear friends since my idiopathic pulmonary fibrosis (IPF) diagnosis nearly five years ago, and it never gets easier. Last week, the sudden loss of Don Prager, known to the community as Donnie Vapor, shook me to my core.
Losing a friend, advocate, and fellow patient is the worst part of belonging to a rare disease community. However, Donnie wouldn’t want us to focus on the negative. He’d encourage us to flip that statement and talk about the positive aspects of being part of the PF community.
So, my friend, this column is to honor you, all the good ideas that were percolating, and all the wonderful memories of our time together as patients, friends, and collaborators.
Despite living with this life-threatening lung disease, Donnie never complained. Instead, he chose to be positive and projected his personal motto of #LiveInspired into the world whenever he could.
One way Donnie did this was through his music and songwriting. I first heard of Donnie Vapor shortly after my IPF diagnosis. Although I was initially doing well, I experienced a lot of shortness of breath, especially while talking for long periods of time. My first thought while quietly admiring Donnie singing on social media was, “How the heck is he able to sing and breathe at the same time?”
Donnie graced us with his singing regularly — often enough for the sound of his voice to be forever etched into my memory. Along with that sound, I’ll never forget the animated movements that accompanied his singing when he really got into performing. His vibrant personality and love for music were evident every time he performed.
Aside from his music, and despite his chronic illness, Donnie always found a reason to be positive and grateful. Without a doubt, he saw the world from a “glass half full” perspective. He has taught me that no matter the circumstance, we can always find something to be grateful for.
After I learned of Donnie’s passing, I scoured through my voicemails and am so grateful to have a message saved from him. In December, Donnie and I spoke about him becoming a PF News columnist, and he was so grateful for this potential opportunity. In the voicemail he left me, Donnie told me about a fall. Although he had sustained painful injuries, the focus of his message was excitement and gratitude.
Donnie could have shared many lessons with the world through his writing, and it’s painful to know that he won’t be able to convey them that way. However, Donnie will continue to be at the forefront of many efforts to help the PF community.
Last October, I wrote a column about the importance of peer support, and I mentioned a new program for patients through the Pulmonary Wellness Foundation. Donnie was a valued part of that program, and although the first eight-week session concluded in November, our small group had just started brainstorming how we could share everything we had learned with the broader PF community.
Losing Donnie and another valued member of that intimate group since November has been exceptionally difficult. However, our focus now is continuing our efforts in their memory and carrying forward their desire to help others living with this cruel lung disease.
As a therapist, I am well-versed with death and dying, and am not uncomfortable discussing these topics. However, I believe there is a difference between grieving the loss of someone who died of the same disease you have, and grieving someone who died of a more natural cause of death, such as old age. Donnie’s death has been so painful partly because of his relatively young age and vibrant way of living.
To learn that someone died unexpectedly leaves many of us questioning our own mortality. Additionally, the death of a friend inevitably brings up other losses and makes you think of other friends who have passed. This can be painful, so it’s important to be gentle with yourself and acknowledge the emotions that come with grief.
This sudden loss also reminds us that life is unexpected and precious. Donnie didn’t take life for granted; he just lived each day and focused on positivity and gratitude. I am going to carry the way he lived with me, and remember that ultimately, what matters most is how we treat one another. Treat each other with kindness and compassion, as Donnie did, and reach out for support if you, too, are struggling with the loss of this phenomenal man. We’ll never forget you, Donnie.
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.
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