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.

 

Advertisements

Cystic Fibrosis Awareness Month: One Day At a Time

As Cystic Fibrosis Awareness Month comes to a close, I want to thank you all. For reading, sharing, commenting, supporting, and being the most wonderful community I could ask for.

Obviously raising awareness is important the other 11 months of the year, too, so I’ll be continuing to do what I can in this little space to share my story – and I encourage you to do the same.

Tomorrow is my tri-monthly Hopkins appointment, and once again my nerves are getting the best of me. I’ve been thinking a lot about CF lately, more than usual. Partly because I’ve been more active in the community during CF Awareness Month than ever before. But I also think it’s because I have more time on my hands.

I left my job back in November for many reasons, one of them being to focus on my health. And while it’s been great, it means I’ve had more time to think about this disease. The future, the fears, the daily hardships, the questions, the community and all those affected.

Maybe that’s why I’ve been more quiet on the blog these past couple of weeks.

On May 1 I came ready to embrace this month of awareness and truly participate. I’m proud of what I accomplished, but after the first couple weeks I found myself consumed by it. I dove headfirst into a community I’d held back from for so long, largely out of fear – both of the known and unknown.

All of this to say I’m trying to find a balance. The CF community is made up of some of the most supportive, beautiful, and compassionate souls – people I desperately need in my life. It’s also full of heartache.

It’s all too easy to get dragged down by the sadness that surrounds having cystic fibrosis. I find that especially true as I approach each appointment. But I know indulging in my fears doesn’t help. So I struggle to pull myself out, to replace the negative thoughts with hopeful ones. And, as always, I do my best with each day I’m blessed to wake up to. Reminding myself to take one step at a time, even if they’re only baby steps.

What do YOU do when you get caught up in your worries and fears?