When I started writing this column it felt like such a gift to have a space to share my story. I didn’t care if anyone but my editors read my posts. Maybe it’s selfish, but this is a way for me to process the experiences I had related to my mom’s idiopathic pulmonary fibrosis (IPF) and double-lung transplant. Writing it out has helped me wire the story into my brain in a way that I want to remember it.
I’ve learned a lot about myself by examining my memories and processing them through writing. It’s been helpful to have a dedicated day each week for self-reflection and processing. I always feel better when I hit that “submit” button on a new post.
But even though it feels good to get the email every Friday morning that another column has been published, doing this work is often painful. It’s been almost a year since my mom’s health took a sudden nosedive. It seems fresh and tender — and incredibly distant. Sometimes, I can smell the ICU. I recall the language and sounds of the hospital, the skills I learned, the procedures the nurses did 100 times a day. I can see it all, hear it all, feel it all.
Some days, it hardly crosses my mind. In the comfort of my home, away from the hospital that saved my mom’s life, I can ignore it. But the trauma happened. I’m reminded of it in some small way every day. Every time someone in my family calls, I get a jolt of adrenaline. It is a response that developed during the months of waiting for “the call.” For three months, I didn’t know whether a call from my dad or aunt would be to mobilize me for the transplant or to deliver the worst possible news.
There are other ways that this experience percolates into my daily life, but it’s usually in small, thoughtful moments. I can reflect on it in wonderment and gratitude. I can think about how scary and hard it was. And then I can get on with my day. But once a week I sit down at my computer to work through it with words. Each time I’m reminded that life is fragile. Some days I just do not want to go there. I’ve woken up after a day of writing feeling physically ill and exhausted from having spent so much time focused on the memories.
Most of the time, I enjoy the writing process — or at least find it therapeutic. But there are days when I have to force myself to sit down and dig through the old brain box. I procrastinate for most of the day, have a good whine, and then start to poke around in my memories for a useful or interesting thing to write about. On those days, when I don’t want to write for myself, I tell myself that the work may serve others. I try to keep things light and put a positive spin on tough topics. I try to write things that may help people cope, or better serve their loved ones with IPF.
On those rough-writer days, it’s the readers who keep me motivated. I think about the comments and emails from folks who’ve opened their hearts to me. Hearing your stories, your fears, your pains, and also your gratitude pushes me to write through my own pain.
I am fortunate to be able to create a space for others to say all the difficult things they feel. Your stories are safe here, and when I read them, I feel them in a way that is hard to explain. Last week, someone commented that my posts have given her more comfort than anything else as she cares for her father. Being told that was an incredible gift!
I received a card from a close family friend on my 18th birthday. It says:
We give comfort
and receive comfort
sometimes at the same time.
I have carried this card with me for 10 years. I think of the sentiment often, but more so on the days when I struggle to write. If my writing provides comfort to even one person, that knowledge is a huge comfort to me in return. The act of sharing these stories and hearing yours is healing. And it makes it all worth it.
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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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