Honoring One Year of ‘Courage to Care’

Last weekend, my column turned 1! There were only a few weeks in the past year that I did not write a post for Pulmonary Fibrosis News. This means that I have had about 50 opportunities to share my family’s story with the world. I have tried to write about things that both patients and family members would find valuable.

As I look back through my column at all of the stories I’ve shared here, the struggles I’ve worked through, and the insights I’ve gained, I feel proud. This column has given me a space to process my mom’s illness and lung transplant. Being her caregiver was the single most important job I have ever had, and though I was hesitant at first, writing about it has proven to be a significant one, too.

A lot of the memories from the earliest days of my mom’s hospitalization feel dream-like and bizarre. My first trip to San Fransisco felt like an eternity, but I was only there for 23 days. So much happened during that time that I needed to dig into to gain a deeper understanding. Writing about it was therapeutic.

From those troublesome days when my mom, Holly, was in the ICU fighting to regain enough health to get on the transplant list, I produced writing that may help pre-transplant patients and family members who are navigating a loved one’s acute exacerbation. If nothing else, I hope it reminds family members that they are not alone. Others have walked through the same trials and understand the fears and triumphs of companioning a loved one with a terminal illness in the ICU.   

Because I don’t know what it feels like to be in my mom’s shoes — or neon yellow hospital socks, as it were — I can’t relate to my readers who have IPF in the way that the other PF columnists can. Thankfully, Charlene Marshall and Mark Koziol do a great job telling their stories and supporting our patient readership.  

I know there are a few family members out there reading columns, too, so I believe my perspective as a caregiver is still valuable here. It has been such a pleasure to meet some of you in comments and emails over the past year. It gives me a renewed sense of purpose to commiserate with you, and hear about your experiences. I hope you know that you have a friend in me if you ever want to talk.   

I have accomplished a lot by toiling my way toward 800 words every week. I am grateful to have the opportunity to write my way through this experience. I’m lucky to have colleagues who offer excellent guidance and vast collective knowledge, from which I’ve created several posts. Mostly though — and I can’t believe it’s taken me a whole year to put this in writing — I am thankful that my mom gave me permission to share this story.   

She gave me the go-ahead to start writing when she was still in the hospital recovering from a nasty post-operative bacterial infection that was more terrifying than the lung transplant itself. She told me that it was a great opportunity to use my writing degree and get my work out into the world. If she was hesitant about me sharing her story, she never showed it. She trusted me to tell the story in a respectful and honest way, and I hope that I have.  

I know that talking solely about the most vulnerable days of someone’s life is not the best way to introduce them to the world. There is much more to my mom’s life than her IPF diagnosis, or her lung transplant story. And I suspect that she doesn’t love how blunt I am sometimes about the severity of her condition in the ICU.  

There are things I’ve written about that cause her pain to relive. I know she doesn’t like to hear about how scared I was, or that it was hard for me to see her suffer. At the time, I didn’t let her see that. I’m sorry that it hurt her, but I wouldn’t change a thing. I am so glad that we went through it together and survived.   

So, thanks Mom, for living through it, and for letting me tell the tale. 

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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.