When I got to be around 10, I started to understand the severity of my disease. As a ploy for attention, I would proudly announce to my classmates that I would not live into my 20’s.There was a part of me that enjoyed seeing them squirm with discomfort, it was a confirmation that nobody I knew was comfortable with this topic. My proclamations were light years from my heart as I was so disconnected from the emotional truth that I shut down until high school.
I grew sicker as I grew into my teens and spent my first weeks in a hospital around the age of 12. There was a boy down the hall who was 11 and he also had CF. I knew that he was sicker than me because they moved him into my room to be closer to the nurses’ station and kicked me to the end of the hall. One night, I saw his parents leaving and crying. That familiar cold chill went through me and I assumed that you had taken him. Unfortunately, I was right.
This was a boy I had never known but he was one year younger than me and he was dead. I cried for him and cried even more for me. We had the same disease, he was one year younger than me and he was dead. You didn’t make sense.
My uncle died not long after this event and I remember the feeling of complete terror and helplessness as we greeted my grieving aunt and cousins. I wanted to smile and pretend that we were having a pleasant family reunion but their tears foiled those plans. I wanted to avoid the topic of my uncle entirely. I wanted to hide until the sadness around me was over. Instead, all I could do was sit in a room of grieving loved ones, half in shock and half sick to my stomach.
At 13, my fear of my own death was abstract, but palpable. I began to act out in dark teenager kinds of ways. I dressed in black and wrote somber poetry about the meaninglessness of life. I drank and smoked with my friends. The smoking especially felt like a true empowerment and a “screw you” to this disease and to you. I always have seen the disease as separate from myself and, in this case, that proved to be a great disservice to my own health.
It would be many, many years later that I would find myself face to face with you as an adult. I had to take two passes at the dying thing before I could move aside my fear and denial long enough to embrace what was happening. With time and a weakened body, I grew unafraid of your truth and welcoming of your gifts.
I could write pages about the freedom that comes from accepting you as a part of life. I could write books about the beauty of dying and how it can transform your entire foundation. (At least I’d like to think that I could.) But the feelings of peace that I have experienced are memories now. I can only explain what I remember. I can only tell you that what should have been “the worst part of my life” is that part that I look back on most fondly. I can see the bitter-beauty and complexity within my experiences and tales of those around me. I can only wish that telling my story will help others understand why a big piece of me looks forward to the dying I have to do in my future.
Thank you for everything,