From Fearful to Fierce: How IPF Helped Me Find My Fighting Spirit

Waiting for my mom, Holly, to receive a life-saving lung transplant has allowed me endless opportunity to explore the dynamics of fear and courage — something you will likely have picked up on if you’ve read any of my previous columns. These feelings have been the driving forces my entire life.

I am 28, but I didn’t really feel like an adult until I had to face the fact that my mom had a terminal illness. Aside from getting married — a decidedly grown-up thing to do in my opinion — nothing that I have done in the last decade has felt very “adulty.” Many of the life-shaping decisions I have made — or not made — have been influenced by fear.

For three New Year’s holidays in a row, I’ve written, “Don’t let fear be the pilot,” as my goal for the coming year. Last New Year’s Eve, I woke up in one of my worst nightmares — or, I would have if I had been able to sleep. I was on the first Seattle to San Francisco flight of the year to visit my mom in the intensive care unit. Fear was my pilot even then. The anxiety of not knowing how my mom was really doing propelled me toward her. Even if it was bad — and it was — I needed to see for myself.

I was shocked to see the toll idiopathic pulmonary fibrosis (IPF) had taken on my mom in such a short time. For so long, I hadn’t wanted to know what this disease would do to her. When at last there was no way to avoid it, I put down roots in the middle of the nightmare and absorbed every piece of information that I could. I watched, listened, and processed what I had suspected for some time — this disease was killing my mom.

About an hour into our visit, I excused myself to the restroom. I couldn’t tell my mom that my head was spinning, and I wanted to throw up. I couldn’t ask her to talk me out of a panic attack like she has so many times. I realized something as I slid, sobbing, down the wall in that cramped bathroom stall: Fear had definitely not gone away, but my relationship to it had changed. I found strength for her sake, and with it, the ability to deny panic. I had scarcely wielded that kind of power over my fear before.

I could neither ignore, nor change the situation. I couldn’t pretend it didn’t matter just because it scared me. I had to walk with fear instead of letting it freeze me in my tracks or reroute me altogether. I learned to compensate. When it started tugging on my nerve, tipping the equilibrium in its favor, I took a walk. I called my husband, my best friend, or a number of other incredible supporters. I dealt with it — and am still dealing with it — on my terms.

My fear wanted me to start mourning my mother while she lived and breathed (however poorly). Instead, I tried to focus on visualizing successful treatment. The only good thing about IPF is that it can be fully treated with a lung transplant. It’s considered a treatment rather than a cure because the patient trades diseased organs for a host of other lifelong challenges and risks. It is extreme, and it is not the right choice for everyone.

Because my mom decided to try for a transplant, I knew there was a chance that everything would turn out fine. I did not allow my mind free rein to explore every way in which there could be a poor outcome.

I was not in denial of reality, but I learned how not to entertain all of the demons all of the time. I have been working very hard on this part of myself for several years. The very real threat of losing a parent was the ultimate test to temper my resolve.

This whole experience has given me new perspective on my fear. I have been fixated on it for my entire adult life, convinced that it was unconquerable. It maddened me. It steered me into despair and crippling self-doubt time and again. Facing one of my biggest fears forced me to find the strength to be steadfast in spite of fear — to be present and unflinching.

Have I been fearless? Absolutely not. I have simply learned that I am not powerless. I have grown to have control over my fear. I am the pilot now, and I am looking forward to creating a life I’m proud of from the opportunities that await me in my resolution. They are already presenting themselves; this column is one of them.

***

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.