Stories Form My Identity, and I Crave My Truest Identity

There’s a person I really like. (I’m her boyfriend, it’s nice.) And when I really like someone, I drop my defenses.

We were discussing the building blocks of our identity, and I realized mine mostly derive from cystic fibrosis, deafness, and lung transplant. I wondered what it would look like for her to learn what it’s like to be a sick person.

I meditated on that. My heart burned. I opened my mouth. Story after story after story gushed uncontrollably, a busted pipe. Stories of being a kid pushed beyond his years by grief, of friends preying on insecurities bred by terminal disease, of autonomy stripped away as a Deaf man, of people stealing away opportunities because of my broken body.

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I was embarrassed that I took up too much space and that I felt like I was whining. But I can’t share my building blocks without stories of sickness. Most of my being filters through those lenses and their removal distorts my identity. It’s popular to say disease can’t define us, but mine defines me.

Stories are the stuffing of the soul; no facet of you and me originates outside of story. Most of my stories just happen to include disease and disability because of their all-consuming nature. For every story a person has about their hobby, a person with CF has a dozen about a sickness lurking so deep within their being that it disrupts DNA.

So I share stories with people because I want them to get to know why I am the way I am. Stories of hospital staff violating and dehumanizing my body by touching without invitation, of being a little boy unable to sleep while sobbing in fear, of dreams devastated by ruthless insurance and billing departments, of people screaming at me on airplanes for coughing too much, of feeling eternally lost by insanity while hallucinating and strapped to my soiled ICU bed.

Beneath the crush of evil’s torment, I mostly felt alone, afraid, unseen, unheard. When people open their ears to my stories, I can’t quite shut up. (Oops.) The darker stories in me fester, cut, haunt. I share to release them, and I feel again the blades, the terrors, the suffocating, the nausea, the panic, the abandonment. And as I tell my story, I grapple with self-revulsion: I’d been so weak, helpless, and pathetic, right?

Exhausted by the nightmarish memory trip, I said to my girlfriend, “Anyway, I don’t want pity. I have enough pity for myself.” I hate that I said that.

Perfectly, she didn’t try to comfort me. She let me sit there, in that hurt. I didn’t need to be distracted from my pain, to be told things were OK when they weren’t. I simply needed to feel my old aches, to remember they’re also today’s. My memories form my worldview and neglecting them blinds me to myself. Remembering vividly our painful stories is a lot like resetting a broken bone. It’ll hurt plenty, but maybe you can set them into a more manageable spot. Maybe you’ll even heal.

For ages I pursued illusory comforters to help me playact peace when there was none: dissociation, escapism, distraction. I even wrote my stories with fictional twists to control narratives, changing details here and there to form a prettier past. At times I even bought into my own altered versions of stories, forgetting they were first spun as fiction. That’s how desperate I’d been to escape my reality.

To stay sane, I’ve needed to absorb reality. No more diluting details or slapping life lessons to the tail end of traumatizing stories just for the sake of making others around me comfortable. I’ve had to accept that maybe I won’t “get over” my losses. I instead recognize a grief so persistent that it’s become almost stable, become almost core to who I am. Grief is not without gifts, but it doesn’t need to be sugarcoated. Grief is ugly, can rip a soul. It’s torn a lot from me, and those things deserve to be lamented, not dismissed.

Falsifying memories won’t heal me. I shouldn’t refuse justice to how I felt back then and now. My healing comes from sharing my story with rawness, from opening up those old gashes, undoing those flimsy stitches to let them bleed a little longer. I’d shut them up far too soon, hadn’t really felt how deep they’d cut. The grievous wounds demand time and attention, and maybe intervention.

As a Christian, I’m called to hold in tension the realities of both death and resurrection, and enter into both fully. I’ve grieved many deaths, each paving the road to resurrection. Post-transplant, I’ve been resurrected into the sweetest fruits of new life, though I still hold my deaths in sight. The joy of my second wind cultivates in me the courage to be vulnerable. A vulnerable man doesn’t need to lie about his past.

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.