“It’s all come full circle,” I repeated, rather exhaustingly, about two dozen times over the past two weeks when visiting family in Florida.
Exactly two years ago, my family learned we’d have to leave Hawaii, my home for 12 years, to get my lung transplant at the University of California, San Francisco. Now, mission accomplished, my parents are returning to Hawaii.
Relative after relative: “You ready to leave your parents?”
“He’s 25,” interjected Mom with a sigh.
Yeah, I felt ready. But I departed from my parents a couple of hours ago, and now I’m on a plane, feeling iffy about being on my own again. It’s not that I can’t take care of myself. But I can’t help imagining me getting fatally sick and never seeing them again. When septic shock slammed me in 2016, everything happened so frighteningly rapidly, matching the same tempo as my heart — 174 beats per minute “at rest.” In minutes, I went from “I’m feeling kinda sick” to hallucinations dissolving my brain. Sometimes I have vicious flashbacks, memories, 174 flashes per minute, of doctors hovering over me, nurses smooshing me into my bed as I writhed, respiratory therapists cramming masks on my sweaty face.
I have plans to visit my parents in Hawaii this December. I want to make it there. So badly.
July 31 is the one-year anniversary of this column. When I began writing for CF News Today, I was still deaf (from amikacin use; I now have cochlear implants) and actively recovering from my January 2017 lung transplant. I didn’t realize the column would lead to once-strangers in the CF community contacting me nearly every day to say I’ve inspired them in some way or another, or that they need my advice. I cherish those messages. I cherish those people. I cherish you.
I wrote that last paragraph and reflected on the dozens of columns I’ve written. They have themes of courage, gratitude, hope. I think back on my own writing, and I feel inspired. Which sounds narcissistic. Whatever.
I check my archives and realize I’ve been writing for myself as much as I’ve been writing for you. I’ve been writing for my dark times, for my moments of depression, for the episode I’m in now — fear. I write so I can look back on my words and remember my own philosophies. Which sounds silly. Whatever.
I look back on what I’ve written, and I know I’ve got this.
Two years ago, I bemoaned that my disease had violently ripped away my independence, forced me back into my parents’ care (though they’re the best roommates ever). I’m now living in an elegant house in Santa Cruz, a mile from a beach with a breathtaking view at sunset.
Two years ago, I didn’t think I’d survive more than a few more months. Two years ago. I’m shooting for 70 years old. That’s a fine number. Even 57 would be nice. And you know what? If I died tomorrow, I’d die knowing the past year and a half since my transplant has been the best period of my life.
Two years ago, I thought I’d never hear again. I thought I’d never hear music again, my family’s voices, the laughter of children. Two weeks ago, I spoke to dozens of children at church about my deafness journey and the beauty found in both sound and silence. I’m sitting on a plane right now, next to a little girl who keeps giggling — a melodious reminder of sound’s power.
(Below is me getting my cochlear implants activated, and crying when I hear sound for the first time in nearly two years.)
Two years ago, I was seeing the doctor every couple of days. Next week, I visit the doctor for the first time in three months. Appointments typically last an hour including the wait time. Back in the day, they were up to eight hours long. I’m healthy.
Two years ago, I was leaving my friends in Hawaii, uncertain that I’d be able to meet people in California amid my health struggles. When my plane lands, my friend is picking me up for dinner with three other friends. I’ve packed my weekend with so many social plans that it’s kinda stressing me out.
Maybe things aren’t really coming full circle. Maybe I’m entering a completely different circle. I’m opening my windows to a sunrise, not a sunset. I’m getting excited for the next year. I’m gonna kill it. It’s not gonna kill me. No, sir. I look forward to writing to you on my second anniversary of this column.
I am courageous, grateful, and hopeful. Hope is a remedy for worry; it grants ya’ serenity.
The girl beside me has fallen asleep. Her foot rests against my leg, and I assure her mom it’s no bother. She’s so serene. So am I.
Follow my adventures on my Facebook Page, Adamantium Joy.
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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.