The lyrics in Natalie Merchant’s song “Wonder” make me think of my son, Cullen: “Newspapers ask intimate questions / Want confessions / They reach into my head / To steal the glory of my story.”
Not that there is glory in living with pulmonary hypertension (PH) or receiving a heart and double-lung transplant, but the rarity of both has often put a spotlight on Cullen. He is an introvert by nature, and this extra attention has made him feel uncomfortable.
Cullen’s history with PH and post-transplant experiences offer a lot to the public and those now walking in his shoes. His story encourages strength during struggle and hope amid despair. It offers advice and support that can only come from someone who has battled the life and death struggles that he has.
He has survived intense emotional and physical pain. He knows what it is like to be stalked by statistics of more impending dangers ahead. But somehow, he manages to stay focused on the present and patiently reaches his goals one careful step at a time.
Because Cullen’s inspirational story could possibly help others, he agrees to have it told, just not by him. It is with his permission that I “share” the glory of his story through this column and other outlets. Telling it is a privilege earned through trust, respect, and knowledge gained as a reliable witness to all he has been through.
The most important step in telling someone’s story is permission to do so, and understanding what that entails. It’s also respecting guidelines that change as your subject becomes more comfortable or uncomfortable with their situation. Even when Cullen was a child, I have always tried to be mindful of this by asking him which experiences I could share through either words or pictures.
When diagnosed with PH at 8 years old, he understood the importance of explaining his disease to teachers and classmates. There was no hiding the fact that something was different about him. He always wore a backpack that contained a pump with tubing trailing up his shirt to his chest. Educating supervising adults about Cullen’s complicated continuous intravenous Flolan medication and teaching students not to pull at his central line were things we had to do.
If only that was the extent of the focus on Cullen, but living with PH came with limitations that were difficult not to notice, especially in a child. Not being able to participate in certain activities, such as gym, made him feel both excluded and the focus of uncomfortable attention.
Wishing not to place more focus on his PH than there already was, he requested increased control of what was shared about him on social media. The nonprofit CaringBridge helped contain details about his health to one source that made it easier for him to approve and follow.
His goal was to prevent PH from defining him, but that was unavoidable when fundraising for transplant. The cute little boy with the freckled face fighting a life-threatening disease became newsworthy and well-known throughout our community. The response to his story was heartwarming. Cullen would have preferred not to be the focus of so much attention, but he appreciated the support and was hopeful that he was helping to spread PH awareness.
The year leading up to Cullen’s transplant was hard. He felt and looked extremely sick. We shared fewer pictures of him, and although it probably seemed like we were very upfront about his struggles, there was much more we only discussed with a chosen few. It is possible to share a person’s story while still protecting their privacy.
When Cullen received a successful heart and double-lung transplant, frequent updates about his amazing, life-saving experience were requested. With Cullen’s permission and editing, I have and will continue to keep people informed through social media, CaringBridge, and awareness videos.
A year ago, I was hired as a columnist and forums moderator at Pulmonary Hypertension News, but not before having a conversation with Cullen. He feels like rehashing his PH days is like forcing his feet into shoes that no longer fit. It is difficult enough for him to remain steady in the ones walking the post-transplant path now curved by kidney disease.
But he has been incredibly supportive of me telling his story through my caregiver perspective. When I tackle sensitive topics, he reads and approves my work before I submit it. He knows my goal is to help others going through what we have, spread PH awareness, and encourage people to become registered organ donors.
I am grateful that Cullen has trusted me to share his experiences for him and I hope that my readers find inspiration in the glory of his story.
Note: Pulmonary Hypertension 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 Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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