I named my column “Courage to Care” because I wanted to convey that it takes a lot of guts to be a caregiver. The moment I decided to take responsibility for protecting my mother, I became a courage-making machine. I have mustered courage all day, every day, to face the scary and unpredictable reality of idiopathic pulmonary fibrosis (IPF) and lung transplant.
I have cultivated it whenever I’ve needed to be my mother’s advocate, or quite literally for a time, her voice. I have summoned it in the face of bad news, in the presence of gut-wrenching fear, in pain and discomfort, and in weakness.
The mental exercise it takes to stay positive, empathetic, and encouraging is tough work. Showing up to the hospital, day after exhausting day, requires bravery. Being a caregiver is not for the weak. It is agonizing to see a loved one suffer and face their mortality. It will scare the crap out of you and break your heart over and over again. And, it is lonely — even if you have help and support.
I’ve had to find the courage to care in so many ways that I could not have anticipated when I got the call that my mom was betting her life on the hope of getting a lung transplant. I’ve certainly had moments of weakness, and a handful of full-blown meltdowns — several of which might have medaled in the ugly-crying Olympics.
But I have also felt clarity and peace. There has been beauty amid this trauma. I’ve shared vulnerable and uplifting moments with my family and friends that I never would have otherwise. People have stepped up for us over and over again. I have felt rewarded and grateful on far more occasions than I have felt weak and hopeless.
One of my techniques for staying grounded and positive is to recognize the good things in each day. Even on the hardest days, there is always some good to be found. Some people call this practicing gratitude. I like to think of it as writing a pro/con list about being a human, but ignoring the cons and highlighting the pros.
Several years ago, I started writing a list of my “daily good things” before bed each night. There have been days when “I’m still breathing” was the only thing I acknowledged. I have really struggled with depressive tendencies, negative self-talk, and anxious thought spirals in the past. I still do sometimes, but I had an epiphany on my way to the hospital one day: Pro-list mode had become my default.
As I was hurtling toward one of the scariest days of my life, I was subconsciously seeking the positives and refusing to let the negatives linger. I knew that I could not be the caregiver my mom needs if I were too terrified or depressed to function. Practicing pro-listing, and finding things to be grateful for allowed courage to occupy all the space that fear once had.
Changing my mindset is an ongoing project, but with time and practice, I’ve heightened my awareness of my internal dialogue. Awareness is the first step to making changes to harmful thought patterns. Do I sound like a therapist? That’s probably because I learned that from my therapist! Anyway, the point is that working on changing how I interpret and react to my experience has given me the mental fortitude to get through this.
If pro-list writing were not part of my mental process, I would have dealt with my mom’s IPF by being paralyzed by panic, unable to be consoled by anyone. I prefer this version, where I have the courage to care.
To close, I’d like to share a pro-list that I wrote on one of the terrifying days when we didn’t know if my mom would become healthy enough to get on the transplant list. I hope it inspires some positive thought spirals in you.
- I am becoming familiar with San Francisco and feeling creatively inspired by its architecture, colors, and people.
- Public transit offers time for reflection, reading, good views, and people-watching.
- I get to have family time.
- I feel a deep appreciation of my husband, Jonny, for his support and for maintaining our home while I am taking care of things here.
- I get to see my best friend.
- I am getting very good at reading lips.
- I am feeling more in tune with faith.
- I am surrounded by people who thrive while helping others.
- I am becoming a better advocate for others, and hopefully, learning to be a better advocate for myself.
- I am being forced to become comfortable with being patient.
- I get to see my mom through the eyes of others, and it’s helping me realize how extra special and strong she is.
- I am lucky to be like her.
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.