‘I Believe’: Blind Faith vs. Blind Trust

Nicole Kohr avatar

by Nicole Kohr |

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I’ve written about coping mechanisms before and the various ways they’ve kept me sane during my journey with cystic fibrosis (CF). Some include writing, the performing arts, and a dark sense of humor. But there’s one I haven’t disclosed: trust.

I’m a believer in blind faith, but not blind trust. Have you ever blindly trusted someone with your body? It’s hard. I believe I know my body best, so I’m not good at trusting others with it.

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Blind faith

When I was being evaluated for transplant in 2019, I was hesitant to believe that I was as sick as the doctors insisted. Sure, I was 3 feet deep in a respiratory infection and drowning in symptoms, but when wasn’t I? My body’s decline was so gradual that I adjusted and functioned despite it. Unfortunately, the team that cared for my body for 26 years didn’t offer transplant surgery, so blind trust in a team I didn’t know was my only option.

The need for blind trust became most apparent post-transplant. My anxiety-ridden body clung to the nurse bell.

“I can’t breathe!” I’d huff desperately.

They’d slowly and calmly reply, “Yes, you can, Nicole. Your vitals are perfect.”

Night after night the nurses would come into my room and remove my oxygen cannula. It was a hard adjustment, and it proved that I no longer knew my body.

My discharge required a pulmonary function test (PFT), a breathing test that quantifies your lung capacity. “It’s going to be low,” I insisted, knowing my history of PFT scores. My lung function was 11% before my transplant. On that discharge day, my forced expiratory volume was 83%.

It took two years to learn about my new body and form a relationship with it.

Relinquishing control

Whenever I’m referred to a new doctor, I bring my entire medical history with me in the form of a single sheet. It lists all my medications, every diagnosis and surgery along with the date, and a list of contact information. Portals and computers have failed me before. I refuse to partake in a “fool me twice” situation.

On the flip side, my husband taught me to assume things will turn out all right. My mom and I didn’t have that skill before meeting him. Instead, we would plan for crises A through Z.

My mom still has trouble relinquishing control. She gives me a list of 30 questions whenever we leave the house. It has nothing to do with her lack of trust or my inability to remember things. She’s seen the worst-case scenario of what happens when I don’t have the proper snacks, drink, or pills. She can’t just leave it up to fate.

Bad news

I’ve met with doctors to discuss hearing loss and kidney disease, among other ailments. Consultations with these doctors can be disheartening. Most stare at the floor or speak to my plus-one. Doctors who convey bad news always look me straight in the eyes. They wait and judge my emotional response. I always keep a confident, neutral face on the outside, even through every use of the word “death.”

I think they expect me to cry or be overwhelmed, and in most cases I am. Still, it’s never my first rodeo with bad news, so I can compartmentalize my feelings better than most. It also means I can take their words with a grain of salt better than most.

One of my favorite Broadway shows of all time is “The Book of Mormon,” written by the creators of “South Park.” It’s offensive to some, but I admire its transparency. Most important, I love its message about blind faith. “I Believe” is a big solo in Act 2 sung by a 19-year-old boy on his first mission as an elder:

“A war lord who shoots people in the face./ What’s so scary about that?/ I must trust that my Lord is mightier and always has my back./ Now I must be completely devout./ I can’t have even one shred of doubt.”

Like him, I’ve faced trauma, and I’ve come up with my own beliefs to combat and overcome. I believe I was put on this earth for a reason, and just maybe, that reason is storytelling. I believe I was born with CF because I’m strong enough to overcome its obstacles. I believe I will live to be middle-aged or older. I believe the CF Foundation will cure cystic fibrosis in my lifetime, and I believe my donor’s lungs were meant for me.

My past has led to my lack of blind trust, but it has also forced me to rely on my blind faith. It doesn’t matter what I believe in if it helps me get up every morning and prove CF can be cured.


Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.

Comments

Paul & Debbie avatar

Paul & Debbie

Great story, Nicole, thanks!
I love the story about a village in olden times, where a monastery was located with a remarkable Zen priest as head monk. A group of warriors came to the area and they robbed and murdered and looted their hearts out. Almost all the people of the village fled when hearing of the mob coming, only an old farmer stayed, and also the head monk stayed put in the monastery. He sat himself down in the Buddha posture on the center court, and waited.
The head of the mob, a fearless warrior that looked very impressively cruel, entered the village and asked the farmer where everyone was. The farmer explained the village was empty, and that besides him only the priest in the monastery was still here.
The warrior hurried to the court to see with his own eyes who had the audacity to resist him and his fierce reputation. He entered the court of the monastery and came on nose length to the priest.
They looked each other in the eyes. Then the warrior shouted to the priest: "Don't you know who I am? I could rip my sword through your belly from left to right without blinking an eye!"
And the priest answered softly: "And don't you know who I am? I could let you rip your sword through my belly from left to right without blinking an eye!"
So, out of mutual respect no one was harmed and the warriors left the village.

This is to show the strength that comes with trust. I use the word trust in this way: a knowing that is intuitive, needs no believe or even understanding, needs no renewal or confirmation, but comes from the deepest acceptation of the goodness of life. The priest, no doubt an enlightened Zen monk, had nothing to fear. He was not identified with his person, not even with his body, he knew life was all there is, death and birth are for the body only, but he - being life itself - could not be hurt by anything that only happened to the body.

Such impersonal trust comes from dis-identifying with the body-brain, knowing that Love is all there is and it leads to a fierce and fearless and all encompassing trust in whatever happens. Trust in the way of Dao, the unknowing process of aliveness that we all are a feature of. If only we could stay out of our minds, this trust would become our nature again.

I liked your story Nicole, hope you liked mine too!

Cheers,
Paul Jordaans
more tales on:
https://www.parkinsjordaans.nl

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