I face death every day of my life. But coming out and finding love was the greatest challenge of all.
“How Old Are You?”
It's a simple question, but it always broke my heart.
In my late teens, I would answer that question and hide the turmoil, heartache, and anxiety that I endured just before I answered. In a single moment, I would think of all of my friends who weren’t able to be asked that question anymore; Makenzie, Kevin, Jacob, Nicole... taken by a disease that I lived with too. It brought a reality to my life that no one else my age could really understand. The mistakes that we all make as teenagers in high school aren’t forgiven by time in my case; Cystic Fibrosis wasn’t going to be forgiving. It’s a genetic condition of the respiratory and digestive systems. It progresses over time, which is another reason why that question was difficult for me to hear.
As I got older, those uneasy feelings were replaced with denial. I spent much of my early adult life thinking about living… while confined within a hospital room.
Sometimes during long hospitalizations I’d rearrange my patient-room, just to feel a sense of separation from the hell that I was experiencing. I would turn my bed toward the window and imagine that my lungs looked like the beautiful trees outside instead of the decaying airways that they were becoming. The truth is though, no matter how much time I spent staring out those windows dreaming, the nightmare was always waiting for me.
But it turned out that confronting death wasn’t the nightmare after all. It was staring into the emptiness of my room after I fell in love, and without warning, she left me alone – after I was given a year to live. I discovered that death itself wasn’t scary... dying with a broken heart was. I stopped rearranging my room. I didn’t care to look out the windows anymore.
“How old are you?”
I was heartbroken. What was the point of age if I couldn’t grow old with someone?
I lost thirty pounds, which caused my health to decline even faster. I needed a double-lung transplant to survive. I had to find purpose. I needed to pull myself back together. It wasn’t easy, but I fought to prove myself as a good candidate for transplant. After being listed on the organ transplant list by UCLA, I had four “dry-runs” where we got ready for surgery, but the donor matches didn’t work out. Then, on March 3, 2015 at 2:30am, I was wheeled into the operating room for my transplant. I remember looking down at my body one last time just before the surgery… my chest would never look the same, but I would be alive because of this selfless gift of life.
“How old are you?”
“I’m just happy to be breathing,” I would typically respond.
This new found love for life came with a new appreciation for love itself.
I remember hiking Runyon Canyon in Los Angeles, something I had always wanted to do, but never could because of my restricted breathing prior to transplant. I was with my childhood friend, Alicia, who came to visit me. As we made our way up the side of the mountain, I reflected on the many experiences that I had just gone through. Every step up, I felt something within myself grow louder and stronger. I had a new scar across my entire chest to add to my collection of imperfections. I had a future that was both certain and uncertain.
Certain, because I was envisioning a life beyond a few months for the first time in years. Uncertain, because I couldn’t believe the things I was envisioning, because I’d never been able to do that before.
I was seeing myself with someone… I was ready to feel love again… that was the feeling. It felt different than it had before though. It was more powerful, and more authentic. I was allowing myself to be free from the social constructs I had lived within for most of my life. With everything I was going to need from someone - their unconditional love in moments where I look awful in a hospital bed, and their understanding that I may not be with them for long because of my condition, I let go of those constructs and found my true self… in love with a man. A wonderful, loving, caring, empathetic man.
“How old are you?”
He would likely interrupt and say, “there’s many more birthdays to come, so we can’t keep track.”
That would make me laugh, which he tends to do so well.
I’ve now had two double-lung transplants. I have continued to learn more about life, and the incredible things that we are capable of when we are determined.
My husband has been by my side every step of the way… and as we face this tough road toward my chronic-rejection, we hold on to each other and on to hope that a third transplant will become a viable option. Without it, I will pass away. But as I said above, death isn’t the nightmare. The nightmare was to die with a broken heart, and I can tell you that my heart has never been so complete. This isn’t a nightmare; it’s the windows that I stared out of, imagining a different life, except this is my life and it’s so much better than I could have ever imagined.
Coming out on MyLastDays was just the beginning of living my truth. This show has allowed me to bare scars that I’ve kept hidden for so long. Because of this experience, I am free. I’m grateful to the team at Wayfarer for championing me as I share my story and I thank YOU for taking this journey with me.
My episode aired for the first time this week on the CW. I encourage everyone to tune in to other stories that are shared this season, as well as the previous seasons.
“How old are you?”
