We sat at the bar at HōM, a restaurant in Charleston, S.C., with two cold IPAs in front of us and a cluster of Wednesday night booze-seekers nearby. I picked at my tater tots with a fork, hesitant to be truthful with the long-haired, bright-faced woman next to me.
Earlier that night, Mary Elizabeth and I gathered next door at Ink N Ivy for the Cystic Fibrosis Foundation's networking social for the Charleston's Finest Class of 2018. A friend nominated me for the award after the Foundation published my blog about my late sister and brother that March. I was honored when I found out about my nomination, but mostly terrified. If chosen, I knew I'd have to face the disease and the people I spent half of my life dodging out of grief.
That night at the social, the event chair and executive director of the South Carolina Chapter introduced Mary Elizabeth, a person with CF, and invited her to share her story with the class of 2018. I clenched the glass in my hand and blinked back tears as she acquainted the room full of strangers with her journey and the latest drug that improved her lung function and quality of life.
I snuck off to the bathroom afterward, allowing myself a minute of tears before I rejoined my friend who was talking to Mary Elizabeth. I introduced myself. We hit it off, and after the event, we headed over to HōM.
“I have to admit something,” I said as I set my beer down on the coaster and faced Mary Elizabeth. “I was afraid to introduce myself to you tonight because I knew you had CF. I lost my brother and sister to CF when I was in middle school. You're the first person with CF that I've talked to since.”
She hugged me, and I cried. “I knew someone in the group had a personal connection to CF,” she said, “but I didn't know it was you. I'm so sorry, April. I don't know what to say. It's not fair. It's not fair that you lost your sister and brother. It's not fair that I get to be here, and I get to be healthy and they don't.”
I broke down on my way home that night. Grief, sobs, and relief spewed out of me like some sort of agonizing purification. I couldn't see the road, or control my body, or hear the radio over my howling. I never told Mary Elizabeth about that. I never told her that the 20+ years of mourning tumbled out of me as I drove the wet roads back to my apartment and climbed the stairs to the third floor and folded onto my bedroom carpet, launching words and tears.
I never told her that in one night, with the softest, kindest nudge, she tipped the wall between me and CF.
Sometime before my induction ceremony for Charleston's Finest, in one of our lengthier phone conversations, my dad and I talked about CF -- about what the CF world was like when Karen and Mike were alive compared to where it is now. He shared more about his experience with their illness than I think he ever has, at least with me. I didn't know that my sister wanted a lung transplant but was too weak for the conditioning process required. I didn't know that Mike chose not to have a transplant. It stunned me when I realized I was angry at Mike for that. How could he? How could he not choose something that would buy him more time with us?
And, there it was -- that prick of heartache again. It took weeks of rolling the pain around in my head for me to recognize my selfishness and to realize what Mike didn't want. He didn't want an arduous, painful process for a procedure that, especially back then, may only buy him a few years at best if it were successful.
Grief shows up again and again -- that's the reality of love and loss.
My big sister would have turned 53 this year. I wonder what our relationship would have been like. I wonder how much we would have in common if I grew into my adult years with her around. I wonder if she would have guided me through my 30s (or, at least, explain men to me, am I right?).
My dad sends an e-card out on Karen's and Mike's birthdays. Last year's card said, “Dearest Karen Marie, You are 'My Special Angel.' You made the world a better and special place for all who knew and loved you. Missing you, forever. Love, Dad.”
It's true what Mary Elizabeth said -- it's unfair that we lost Karen and Michael. It's unfair that they were robbed of the majority of their lives. It's unfair that they will never benefit from continued advances in research and medicine and therapy. But, it also doesn't make it any less beautiful that people like Mary Elizabeth prosper from the advances and medicines. It doesn't mean that I can't be grateful and joy-filled because this gorgeous, 20-something woman is thriving. Life holds enough space for all emotions, even the ones that push and pull on each other.
I drove home from a friend's house after dinner on the night of Karen's 52nd birthday and, coming around the bend into my apartment community, three beautiful deer grazed under the beam of the street lamps. I have lived on this small island just south of downtown Charleston for seven years. Not once have I seen a deer on James Island. But that night, on my big-hearted, animal-loving sister's birthday, those creatures brought her warm spirit to my doorstep when I needed it most.
I don't know what my future with the CF community looks like and I'm still not ready to dive in, but I'm oh-so-grateful for that July night with Mary Elizabeth, over beers and tots. It wrecked me in the best way and, maybe, I needed to be wrecked before I could be restored.
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