Two months ago, I watched myself die, then get resurrected on television. Sort of.
I used to interview fascinating people in Hawaii for local magazines. I’d never imagined I’d be profiled, much less through a documentary. But there I was, featured in a Bay Area NBC segment titled “Catching His Breath.” It chronicled my cystic fibrosis story through the lenses of old family footage, photos, plus interviews with my doctors and parents. (My camera-shy sister wasn’t interviewed, but she played a huge role in my journey.)
It was really something surreal to watch my doctors speak so matter-of-factly about how I was a “terrible transplant candidate” with little chance of survival, and horrifying to hear them describe my transplant surgery. What really touched me was listening to my parents’ transition from discussing my dark state in my teenage and college years, to declaring I’ve worked hard to redeem all the horrors in my life for good.
What wasn’t included was the bit of interview where I broke down crying after saying I was a monster to my family in my younger years. They saw my worst: deceit, bitterness, anger, arrogance, selfishness, and disregard for others’ well-being.
While most people claimed to see me as a model child, my family absorbed my raw rage. I often joke to people that mixing puberty hormones, teenage rebellion, and terminal disease is not a recipe for harmony. But it’s really not funny, especially when you blend in bullying, anxiety and panic disorders, and depression. I felt I needed to vent my fury into destruction, and that meant I “needed” my family to be angry with me — I wanted to destroy their peace so I wouldn’t feel so alone. In reality, they never could have been angry enough to satisfy that twisted desire. I had been hoping that their shared anger would justify and heal my own, but that’s not how life actually works.
My most loathed memories are not the flashbacks triggered by trauma, but the times I verbally ripped into my family because they asked me to consider their feelings by taking care of myself, or asked why I dumped my tube feeds in the toilet at midnight, or simply because they dared to exist. Nothing is more shameful to me than when I blamed my parents for “giving me this genetic disease.”
Maybe my mom thought back to when I was a baby and she wrote an adult CFer for encouragement. He replied that I’d hate my life, just like he did. (For warmer encouragement, read this.)
My disease was, and is, unfair, so I unfairly hurt my family repeatedly. I had a sick sense of justice. They were the most convenient vent for my frustration because family always needs to forgive, right? And they have to be understanding because they know how nightmarish my disease was, right?
It’s not that simple.
It was not my family’s duty to weather the brunt of my fury. They were not my doormat for kicking off the frustrations of the day. Treating them cruelly shouldn’t have been my therapy.
If you’re family to someone with a disease or disability who lacks anger management, draw the line. Do not let pity or sympathy for your loved one enable destructive behaviors — they’ll hurt not only you but also themselves. Tenderness must be balanced with tough love when the moment demands it. It can be just as hard to helplessly watch a loved one suffer as it is to actually have CF. You deserve respect, caregivers and family, not hurt from the hurt.
If my family hadn’t stood up for themselves — they did many times — I wouldn’t have half the character I do today. To correct my wrongs, I needed to realize their hurt, needed to see them as worthy of dignity, needed to see I’d lost myself. As torturous as these memories continue to be, they drive me to do better today.
True family love isn’t letting a child, parent, or sibling steamroll you. Rather, it’s reminding them of their better identity, and being there for them when they’ve finally chosen true, actionable remorse. My family fulfilled this when they sacrificed limitlessly and boldly to give me my second chance through lung transplantation, then gave me the grace needed to chart a different life course guided by compassion.
No single moment has healed me more than eating brunch with my sister and tearfully asking for forgiveness, and her forgiving. No other words empower me to daily strive for the high road like hers that day: “I can see it. You really have changed.”
Yes, I still suck at chores and being cheerful in the morning when I visit family. However, being a good (and healthy!) brother and son is a mission I’m intentional about today and tomorrow to make up for the nightmares of yesterday — and simply because I love my family.
A friend said the film almost seemed more like a documentary about my family’s love than about me. As it should be.
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.
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