This past month has been a rough one for the CF community. Because we’re strongly discouraged from gathering in person – the Cystic Fibrosis Foundation recommends that no two people with CF should be near each other indoors, and that they maintain a distance of at least six feet outdoors – most of our support happens online.
There are a lot of gathering places online – dozens of smaller groups and websites dedicated to CF, but a few places have thousands and thousands of members. Chances are that most people with CF who are online know, know of, or have a friend who knows any other person with CF online. I would seriously guess that the average degree of separation is 3 or 4, compared the theorized “six degrees of separation”.
In my online travels this week, I’ve found out that at least six people have died due to CF during this past week alone. The number of CF-related deaths in 2013 was 426 (out of 27,804 registered patients), which is an average of 8 people per week – pretty close to what the community has experienced in the past seven days.
It makes me so sad. Frustrated. Angry. P*ssed off. It’s devastating, and despite new treatments, sometimes it all feels so hopeless. I try to have faith, but this disease is a dream killer. So many people die in what should be the prime of their lives, when most people are building careers and families, putting down roots and climbing the ladder to their own personal goals. Something that a lot of people don’t understand is that well before CF patients die, most are very sick for a long time. Cystic Fibrosis tends to kill slowly, snatching dreams out of hands and hearts long before its victims draw their last breaths.
I pray to God every day for the man or woman who will be able to answer the puzzle, to figure out how to damn this monster, who hides in every single cell in the body, to the depths of hell. Science has come so far – there has to be someone out there who has the answer. If you pray, I ask you to ask for the same, even just for one night.