On Loss and the CF Community

The CF community has been hit hard the past couple of months. Many have lost the fight, while others are spending the holiday fighting as hard as they can. No matter how close we are, or how well we know each other, the loss of one of our own never gets easier.

This morning I learned that a man I had only started to get to know passed away. He was an incredible force in the community and had dedicated his life to advocating for this devastating disease.

The news popped up on my Facebook feed in the middle of a meeting, tears immediately springing to my eyes. I silently slipped out, took a few minutes, got a hug from a coworker, and went back in. But this sadness has stuck with me. Sadness for him. For his family. For his community that ran wide and large.

And sadness for those of us with CF. It’s impossible to explain what it’s like to watch your friends die. To know that it’s only going to keep happening. That the older we get, the more friends we’ll lose.

To watch people die from the very disease you have is its own kind of torture.

Sometimes it’s enough to make me want to shut it all out. To turn away and not face what’s happening. But these are the people who understand me the most. Who know my fears and frustrations and anger. We NEED each other–we provide a support that no one else can.

Which is why we have to keep fighting. Even when it feels like an uphill climb we can’t win. ESPECIALLY when it feels like we can’t win.

My CF BFF and I made a pact: that we’ll be here, supporting each other, until we’re 80. And I’m going to do my damnedest to make that happen–for every. single. one of us. And I can’t wait for the day we can celebrate our win, together.


3 thoughts on “On Loss and the CF Community

  1. Thinking of you. I think I know who you are writing about, and it breaks my heart. CF is so horrible. Watching the medical strides gives me hope, but it really is difficult to stay so positive with loss among us. Prayers and love.

  2. I’ve actually thought about reaching out to you for awhile and thought that this would be a good time… We used to talk on our blogs a bit back when I lived in Baltimore (2009-2012ish), totally understand if you don’t remember 🙂 . I’m a social worker and have worked in health care since I entered the field. I started working as a CF Center social worker about 6 months ago. Believe it or not, you actually had a role in me taking this job. You were one of the first people I remember talking to who has CF and I have admired your strength and determination. The CF Community is amazing; I am constantly surprised by the generosity and support. So hang in there! I know it’s hard, but you are affecting more lives than you may realize! And it’s also ok to feel the sad days. Thank you for what you do.

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