Support from the PF community is a vital asset for our journey
Finding appropriate resources helps to make every breath count
“Hello darkness, my old friend/ I’ve come to talk with you again/ Because a vision softly creeping/ Left its seeds while I was sleeping/ And the vision that was planted in my brain/ Still remains/ Within the sound of silence.”
Those words are from the song “The Sound of Silence,” released in 1964 by the duo Simon and Garfunkel. I would have been 7 years old when this song was released, but I knew it well while growing up.
But what does it mean? What was it about? I asked Google about the meaning of the lyrics and received about 170 million results. The first verse has always reminded me of the darkness often associated with depression or anxiety. Go ahead and reread it.
During the month of September, the Pulmonary Fibrosis Foundation released “30 Facts in 30 Days” as a way to increase awareness about the disease. The last fact released on social media on Sept. 30 began with the reassurance that “You are not alone.” That made me think about the song’s opening verse.
My idiopathic pulmonary fibrosis (IPF) diagnosis in January 2017 was obviously startling to my wife, Susan, and me. I have written previously about how we handled the shock of that diagnosis. We conducted initial research to better understand IPF from the front seat of my truck as it was parked in a hospital garage.
As we began to learn more, we discovered the broader pulmonary fibrosis (PF) community, thanks in large part to my care team. That community had existed in plain sight all along, yet we hadn’t noticed it because we hadn’t been looking for it.
The transplant education group and the PF support group led by the Inova Fairfax medical facility in Northern Virginia provided me an early introduction to the value of community. Presentations about PF and interstitial lung diseases offered me a good month-by-month education platform, along with in-person meetings.
We also discovered a variety of online groups that created opportunities to engage with other patients and caregivers. Some of these groups seemed to be unmoderated chat rooms that we didn’t find to be helpful. When we discovered the Pulmonary Fibrosis News Forums, we noticed that they were moderated, which appealed to us.
Talk to me
My journey did not end after receiving a bilateral lung transplant in July 2021. Before that, as my condition worsened, it was like arriving at a proverbial fork in the road. I had a choice between pursuing a lung transplant or selecting palliative care. There is no right or wrong choice, and I chose to pursue transplant. That option might not be available to everyone.
Before my transplant, the world also faced a COVID-19 pandemic, which led to isolation for so many members of the PF community. Yet it also prompted the community to look for a way to pivot. For example, many meetings switched to a virtual format. People suddenly needed to become experts on Zoom, an online video conferencing platform that allows us to remain connected.
Anxiety and depression are a real part of this PF journey. If someone tells you to simply “shake it off” when referring to your illness, or they suggest that it is not that bad, they certainly aren’t doing you any favors. They probably don’t understand what you are facing.
If you don’t have a resource that connects you with the PF community, let me help you find one. You can message me in the Pulmonary Fibrosis News Forums or ask for assistance in the comments below.
Remember, you are not alone. Helping you find the appropriate resources to deal with the challenges of this journey is how I make every breath count.
Do you need help finding PF resources? Reach out to me in the comments below.
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.