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

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by Christie |

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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.

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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.

Comments

Nikki avatar

Nikki

My name is Nikki. Im 25 years old. My Dad has been diagnosed with IPF. When you said in a previous post that you aged 10 years in 10 seconds, I felt it. I remember the precise moment that happened to me. It all started with that evil little cough. We've been to countless doctors who have prescribed a rainbow of cough syrups. Keep in mind, my dad is not the biggest fan of doctors, so getting him there was a challenge in itself. It wasn't until one morning I remember speaking to my dad, and he was gasping for air. I asked whats wrong, he said he felt like he was drowning while sitting on the couch, like he just couldn't get air, no matter how much he tried. It was then i booked an appointment with the Pulmonologist and drove my dad myself to find out whats going on. After many tests and scans, the Pulmonologist told us that my father had a particular type of lung disease. He wrote Idiopathic Pulmonary Fibrosis on a little piece of paper, folded it neatly and handed it to me, as if it were something illegal, something that shouldn't be seen by others. My dad was fine, he didn't understand the magnitude of the lung disease right then. Neither did I. To be completely honest I was under the assumption that we'd get some cool new antibiotics, my dad would take them and BAM! All is well in the world. It wasn't until i went home that evening, took that piece of paper out from my jacket pocket and researched IPF. It was at the moment, that very moment, I aged 10 years in 10 seconds. I took that dreaded piece of paper and burned it to ash that very night.

Its now been 8 months since that day, and its all been one messed blur of moments i thought i could never get through. In fact, i still don't think i can. But by some miracle, I do.

My father is my best friend. He is the strongest person I know. In 8 months, i had to learn to be stronger.

Ps. Thank you for your posts, i have found more comfort in them than i have found in anything or anyone else.

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Christie avatar

Christie

Hi Nikki,
Thank you so much for sharing your story. I am sorry that you can relate, but also glad to hear it because it makes me feel understood as well. The thing about all of this is that we get through because we have no other choice. I know it seems insurmountable and unbelievable and unfair at times, but there's nothing to be done but move through it because we love our parents. You are so much stronger than you give yourself credit for, and you will continue to get through these trials. It will test you every day but you can have sweet moments in between the fear and pain. You and your dad will be ok because you have a great bond.
Christie
PS. Thank you for saying that my posts have given you comfort. You have no idea how much this means to me. I've had a lot of late nights digging into this trauma when I really didn't want to in order to get these posts published, and it makes it all worth it to hear that it helps someone.

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Pam Traynom avatar

Pam Traynom

"My fear wanted me to start mourning my mother while she lived and breathed" This is me right now. I've always been strong minded, not now. I'm losing it. Mom and I have no support system. I actually feel I'm afraid to be around her and I don't know why. I'm scared for her and me.

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Christie avatar

Christie

Oh Pam, I feel for you. I am so sorry to hear that you are walking through that valley right now. It's totally valid to feel afraid to be around her. Her illness is a reminder of mortality, and this disease, to be perfectly honest, is cruel and terrifying. No one could fault you for wanting to turn away from that reality. I don't know anything about you or your relationship with your mom, but what I can tell you is this.. neither of you is alone. I know it seems as if you have no support system, and in a physical sense that may be true, but you have loads of people on this website (including me!!) who are here to help you navigate this challenge. We may not be able to stand beside you, but we are all here to offer support and guidance if you should need it. A link to forums can be found in the header.
On a personal level, I can't tell you what to do. Or that it won't hurt like hell to be present with your mom as she gets sicker.. but from my own experience, I can say that I would have regretted it for the rest of my life if I had not shown up when things got bad. It took a lot of guts to do that but I'm so glad I did. And yes, our story has a happy ending, but for many months, that was unclear. In those times, when it was uncertain and terrifying in every moment, my mom and I leaned into each other and we made it through together. We could not have done it apart.
Whenever you need a friend, I am here.
Christie

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