On Sept. 30, 2015, I was playing a show at Sweetwater Music Hall, opening for a band called T Sisters -- a beautiful trio of tall blondes who sing in harmony and play the banjo, mandolin, guitar, and bass like nobody's business. I remember the exact date because it was the night I met Ali. She was in the audience that night and introduced herself after my set. We exchanged numbers and agreed to meet for drinks or dinner later that week. Thinking about it the next day, I realized I didn't know what I had just agreed to. Was this a date? Or was she just a young woman in Marin County, Calif. looking for some friends? I assumed the latter and decided that I would figure it out when we met.
We met at a German beer haus in downtown Fairfax. We got to talking, and as we were sharing our interests and hobbies, I sized her up. I still wasn't sure if this actually was a date. Ali had dark blonde hair that she wore tied up. She had very tiny and straight white teeth, a dash of freckles, and the biggest cornflower blue eyes I'd ever seen. I looked at her outfit: a pair of high-top sneakers, tight jeans, a plain black t-shirt.
And then I saw her pearls. She wore big pearl earrings that were the size of the first joint of my pinky finger. They threw me off. Everything else about the night was pointing toward "date.” But, could a lesbian wear pearls like that? I doubted the possibility enough that by the end of the night I had convinced myself that she was straight, and just looking to be friends. It wasn't until the second time we met that I learned a lesbian can, in fact, wear pearls and we were, in fact, dating.
We didn't go more than two days without seeing each other in those first few months. I was new to the whole “dating a girl” thing -- I'd had two boyfriends in my life and had only just started exploring my sexuality. All I knew was that it was exciting, a little scary, and I wanted to keep seeing her.
I never had to tell Ali that I had CF. She found out before she met me from reading it in my bio on the Sweetwater website. I am grateful that I never had to break the news to her -- she never had to readjust her definition of me from a normal 21-year-old, to a 21-year-old with a life-threatening illness. Of course, knowing that I have cystic fibrosis and understanding what that actually means, are completely different things.
After almost six years, Ali is still learning what it means to love someone with CF. Heck, I'm still learning what it means to have CF 27 years in. It's a constant process of learning, thinking you have a handle on it, being bulldozed by a new reality, and then learning again.
So, we started with the little things. She watched me do my respiratory treatments and I described what each one was for. I squeezed the liquid medication from the plastic vial into my nebulizer cup.
“What's that one?” Ali asked.
“It's actually just salt water,” I explained. “It draws moisture into my lungs to help me cough out the mucus that's stuck in there. I breathe this one in twice a day, but more often when I'm sick.” She nodded and watched my every move carefully.
As I was doing my treatments, I started coughing. This was normal for me, but to someone who isn't familiar with a “CFer” cough, it can sound frightening. There was a tightness in my throat and a deep rumble from the bottom of my lungs. I couldn't stop coughing. My face was red and sweaty, my veins were popping out of my neck -- I probably looked like a constipated gorilla. The last thing I wanted was for Ali to see me like this.
“I'm fine, I'm okay!” I spewed between violent spasms, trying to reassure her that I wasn't dying. After an excruciating few minutes, the coughing fit was over. I took a few sips of water and looked at Ali. She looked straight at me with a calm smile, like nothing the least bit worrisome had just happened.
“So do you want to play checkers?” She asked. I smiled in amazement and relief. “Absolutely.”
In those first few months, Ali walked the perfect line between showing interest and not prying. She encouraged me to share, but didn't force it. I was awestruck at how on board she was with my whole situation. I felt conflicted because I wanted to share my reality with her and I wanted her to understand, but I also wanted to save her from having to live with CF too.
I would never wish cystic fibrosis, or any chronic illness for that matter, on anyone. So why would I ask Ali, someone I respect and admire and love, to sacrifice her unblemished beautiful life and climb her way down into the Land of the Sick with me?
During one of my hospital stays after about four months together, Ali came to visit equipped with Chinese food and card games. Her tight high ponytail fell across her shoulders as she rummaged through her bag for the paper cups and soda. We played Gin Rummy and ate chow-mein and stole kisses between the nurse's comings and goings. After my last respiratory treatment of the night, I turned to face her.
“How can you still want to be with me after seeing all of this?”
She cupped my face in her hands, and looked at me without blinking. “Because I love you, Olivia, and this is part of what makes you, you,” she responded without hesitation. I told her she didn't know what she was getting herself into. I told her she was going to change her mind once it got hard. I told her she couldn't possibly comprehend how achingly hard it would be. But, she was steadfast and stubborn. I loved her for it.
We both lived up to our word. Ali told me she wouldn't let CF scare her away and it didn't. I told Ali that CF would get harder, and it did. My health started to decline steadily in the fall of 2018, and nothing I did made it better. I was on IV antibiotics almost every month, doing treatments three to four times a day, losing weight no matter how much I ate, and I was exhausted all the time.
Ali stayed by my side when I eventually got evaluated for lung transplant, when our future was uncertain and scary, when I was angry and sick. And, she stayed with me when I finally started Trikafta® on Sept. 30, 2019 -- our four-year anniversary. As is the case with many people who have had success while on Trikafta, my life completely changed.
My cough all but disappeared, my personality that had been dampened by illness came back full force, and Ali and I started planning our future together. We are currently planning a big, beautiful queer wedding for this September, and we are so grateful to be able to celebrate our love and our health.
After all this time with her by my side, I've finally stopped feeling guilty about giving Ali a life with CF. Our life is like a big tapestry, woven with the threads of our experiences, passions, pasts, and hopes for the future. It's woven together so tightly that you can't tell whose thread is whose anymore -- it's just one thing now, one life. CF will always be a part of the tapestry, but I know that whatever comes next, we will face it together.
Interested in sharing your story? The CF Community Blog wants to hear from you.