Thousands of Feet Apart
Having cystic fibrosis means that I cannot be within 6 feet of another CFer. As I write this, it’s still hard for me to come to terms with it. I lost my best friend to CF last year. Admittedly, I have not been the same since. I still hurt deeply inside because I am still grieving for my friend.
Friending another CFer
I met him online on a social media support group for people with CF. At first, I did not want a friendship with another CFer because I feared losing them. While my worst fears did come true, I don’t regret it. This friendship is one that will remain with me for as long as I live.
After we met, we became two peas in a pod almost instantly, talking every day. We video chatted daily. If either one of us missed a call, we’d text, “Are you alive or what?” We had this sense of humor that accepted what CF meant and shared a kind of crude sarcasm about death.
We talked about losing one another
Death was a subject we talked about daily and we understood about each other in a different way. We went through surgeries, hospitalizations, and treatments together. If he was sick or I was sick, we’d be there on video calls to make sure we were on top of our medications. We fought with one another over missed dosages and we cried over any changes in our health.
We were in it together
In truth, we fought CF together and we promised to be there for each other no matter what. The hard truth was always looming over us: we could never hug, we could never see each other face to face. He was my best friend, the best friend I could never physically be there for. We sent each other packages on birthdays and Christmas and laughed at the silliness of each gift. We wore oxygen together on bad days.
Losing my friend to CF
Soon, to my horror, I had to watch from a distance as my best friend quickly began to get sicker and sicker; that's when I truly felt helpless. CF was taking him and I could do nothing but watch. I could try to call him, but there were a few times when he could barely speak and he couldn’t remember things, and I knew it was his lack of oxygen. He deteriorated--and I did too, along with him.
His wife told me when he passed and my heart sank and broke into a million pieces. I lost the only person in the world who truly understood my struggle with CF--because it was his as well. I lost my best friend who I talked to and struggled with every day.
The days following, I was in a dark place. My husband made a wonderful suggestion: I could write him a letter and we would release a balloon to the sky. He always said he wanted to go to space. I bought a wrestling balloon (because he loved wrestling) and attached the letter to it and released the balloon. We were thousands of feet apart, but our hearts were right next to each other.
I still hurt for his loss, but I am doing all the things we said we were going to do together. I honor my friend because I know he’d do it for me, too.
It’s not easy to lose someone you care about, especially to a disease that you both share, but it taught me to view life differently and cherish what I have. While I could never physically do it, I hugged him and held his hand as he got worse, and my heart was there when he got his wings. Friendship is a beautiful thing. I’ll always cherish my friend and the time we had together.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?