How I fill the silence that comes with my pulmonary fibrosis
Where there's a book, there's a radio show — and other options besides
During my journey with idiopathic pulmonary fibrosis, I’ve noticed periods of silence that affect not only patients, but also caregivers. I experienced my first significant such period about eight months after my diagnosis in January 2017.
I took disability leave from my job as I was no longer able to handle its responsibilities. That wasn’t a surprise; my wife, Susan, and I had planned for it. Fortunately, we’d prepared for our retirement home for years, just not anticipating that we’d move into it in 2017 instead of 2024.
Life slowed down a lot when I left the everyday world of work behind. Our move took us from a dense suburban environment to a more rural setting without streetlights, sidewalks, or traffic lights. My care team was 90 minutes away on a good traffic day. That made for even more silence.
Later, when COVID-19 arrived in 2020, the silence was almost deafening. Not only did I encounter fewer people, those I did encounter were at a distance. Hugs and handshakes became memories of how we used to greet each other.
I used Zoom and similar technologies to fill the void. Even then, there were times when the silence was as heavy as a dome surrounding me. That’s when I looked for other options to alleviate the quiet.
Deepening and expanding my hobbies
I had hobbies before my diagnosis, and most worked fine as solo activities. For instance, I’ve been a licensed ham radio operator for decades, and I continue to use my radios even today. Some solo hobbies, however, involved challenges. While I enjoyed reading different types of books, browsing in a library or a bookstore wasn’t possible. Ordering books from outlets like Amazon, while convenient, can become expensive.
I discovered that I could borrow e-books from the library. Mine uses an app called Libby, which works much like a visit to a library. If the book is on the “shelf,” you can check it out for a specified period. If it’s not available, you can put it on a reserve list, and the library will notify you when it’s available. Libby works on a variety of tablets, e-readers, and computers.
Another lending library favorite for me became the Internet Archive, a treasury of written, audio, and video collections available to borrow. While I can always find something to read, the Internet Archive also offers radio shows. My range of choices ran from Jack Benny radio shows to more current choices such as “Opie and Anthony,” another radio show.
I’ve come to appreciate quiet time more than I thought I would. Following my bilateral lung transplant in July 2021, I continue to use alternatives for my reading. Writing here for my readers each week and moderating the Pulmonary Fibrosis News Forums are tremendous outlets in that vein that also allow me to share my experiences.
When necessary, though, I use my voice for advocacy. I’ve also discovered that my voice resonates well outside the pulmonary fibrosis community. The issues are many today, and I never want anyone to say my silence was consent.
I’ve also discovered that learning another language is a good way to alleviate periods of silence. I’ve long had a love affair with France and would pick up small pieces of the language on each trip there. One night on a whim, I downloaded Duolingo, a language-training application. I’ve used it day after day to learn more French. When Susan and I return to France next month, I’m anxious to use more of my improved language skills.
What have you discovered to fill the space left by silence? Is it a craft, is it an improved skill, or is it something completely different? Do you find that it helps distract you from the trials of living with pulmonary fibrosis? I know it’s helped me ensure that I make every breath count.
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.
About the Author
John Gould
I'm on the transplant list since July 2nd, from my research I need to get about twice as bad as I am before getting close to transplant, likely in about 2 years. I know how bad I'll need to get and am not looking forward to that, I'd like to get my transplant now and get on with my life.
Until I've lived with IPF, I never realized how much normal breathing supported my.body acting normally, but it seems every part of my body is affected by my lungs not working right.
In addition to having a ton of alone time now, I never realized how much I'd need to call on my wife go help me during my day, also the many things I just don't do because I'm too tired out to do them, and how many more times I'm saying thank you to her. Also what I get done now are only necessary things.
As I've gotten worse and worse, I can do less and less and I am very dependent on supplemental O2, so I spend more and more time sitting and reading and watching TV. Not by choice, but it is just about all I can do breathing my O2 relaxing and keeping my blood O2 above 90 and heart rate normal.
However, the little things in life I notice more - like getting a needed parking space when I need it, like the beauty of the sky when I look up, being out of breath more and more I think of my words before I say them, and am always weighing continuing a conversation verses the words it takes to continue it verses how low my blood O2 will go and heart rate will rise and how tired I'll be if I continue the conversation or difference of opinion. I notice God's hand in these little things now more and more, and I am very grateful for His help.