There are days where I can’t bring myself to do it. Where I can’t bring myself to tell a person “This is a documentary about my friend Eva. She had Cystic Fibrosis. The movie is about her and her family’s wait for a double lung transplant. In the end of the documentary, she receives one. Unfortunately, under two years later, she develops chronic rejection and has to be relisted for transplant. She died waiting for a second set of lungs on March 27th, 2010. The reason I remember this date so easily is that my friend Chad, who also had CF, died on the same day in 2003, from complications associated with a long wait for a double lung transplant. He was 26; Eva was 25.
I am traveling across Canada trying to raise awareness about Cystic Fibrosis and organ donation. I am doing this because my husband, best friend, and soul mate, Joey Whitford, also had Cystic Fibrosis. He died this February after a long wait for a liver transplant. He died even though it is possible to do live liver transplants and there were two people ready and willing to help him. He had to wait so long, he had to take a cadaveric liver, which, although it was better than nothing, was not in the greatest shape. He was so weak, he was unable to fight off an infection that he developed after his liver transplant and died 9 days after his surgery. Even though he had already survived a double lung transplant; the mother of all transplants, he was taken out by a liver. Even though when people think about Cystic Fibrosis, if they think of it at all, people think lungs. CF is a multi-organ disease. If you are one of the unlucky people with CF who ends up needing a liver transplant, things could get rougher than you ever imagined. When Joey’s liver disease got worse, he developed excruciating pain. He was thin as a rail because he had no appetite and couldn’t keep food down, but his belly was swollen. Eventually, he had to have a bag attached to his side to drain the fluid that built up inside his abdomen as a result of his liver disease. In addition to poisoning his body, the toxins from his liver also poisoned his mind. He became confused, inappropriately angry at people he loved, and forgetful, to name a few. He would have been horrified by this because Joey was sweet, caring, and went out of his way to make every person he talked to feel special. That was my Joey. He is why I’m doing this. Him and Madison:
To name a few. I want to find a cure for this disease because I miss this:
So much that it physically hurts. Because when I am about to cuddle on the couch and watch a movie with my nephew in Peachland, he tells me that it is his dream that Uncle Joey could become alive again so that he could cuddle with us and watch the same movie. Because that’s my dream too, even though I know that there is no possible way that this can happen. So instead, I want to prevent it from happening to other people I care about. Other people with Cystic Fibrosis, other families affected by CF, other folks without CF who need a transplant for some unrelated reason. Those are a few reasons why I am doing this.”
But there are some days that I can’t bring myself to say this. I can’t say this because I am too mentally and physically exhausted. Because I am sitting across the breakfast table from Joey’s mom, who knows all too well what happened and what it was like on the inside. Because we spent the last four days together crying intermittently about how horrible things were, how much we miss him, and how we are going to survive this. Because I just can’t put either of us through that again right now.
So instead I say, “Want a free movie? I’m traveling across Canada to raise awareness about Cystic Fibrosis and organ donation. This is a documentary about my friend Eva, who had CF, and her wait for a double lung transplant”.
I say this because sometimes, it’s all I can say. And then I smile for a photo because most of the time, I am great at holding it together and acting like nothing’s wrong. Even when it is.