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.

 

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On Sadness and CF

Life’s been really wonderful recently. *knocks on wood*

I’m loving my job – both what I’m doing and the amazing people I get to do it with. There are plenty of adventures with friends in the coming months. And Mike and I are planning a big trip later this year. I’m soaking up life’s sweetness and feeling very blessed.

But there’s also a sadness I can’t shake.

The older I get, the harder it is to not become my disease. It’s incredibly important to me to be more than cystic fibrosis, but with each big life event I feel more and more trapped by the hard-to-swallow truths of living with CF.

The big one? Knowing a shortened life – one riddled with scary health obstacles – is a strong possibility.

As people get older, life gets more complicated, no matter who you are. And when you throw in a life-threatening illness, the complications seem to grow exponentially. It’s a daily struggle to live my life outside of my disease – to not let it seep into each moment of my day.

My biggest fear is that it’s changing me. The loneliness… the fear… the what ifs… I’m scared they’re slowly chipping away at who I am.

In many ways, having cystic fibrosis has helped me become who I am. It’s made me better, stronger, more empathetic. And I wouldn’t change any of that. But it’s also made me more fearful, less spontaneous, and always worried.

There’s this HUGE part of my life that very few people are able to understand. With cystic fibrosis, there’s no break, no day off, no vacation. Every single day there are pills to take, treatments to do, neb cups to wash, scary thoughts to try and ignore.

It can be isolating and makes me feel separate from people, like I’m part of this “other” group. So I fall into the habit of pulling away or hiding parts of myself in order to feel more normal.

I know that much of this is just that, how I feel, and not how I’m actually perceived. And that’s a reminder I keep tucked away to pull out at times like this.

I’m sorry I’ve been absent from this space. It was mostly because life’s been keeping me busy with lots of goodness.

And partly because I couldn’t find the words. While I’m still not sure I explained it perfectly, I hope it at least shed some light on the emotional difficulties that can come with chronic illness.

Tonight I’ll make dinner with my husband, have a glass of wine, do my meds (while watching the hot men of “Chicago Fire” because, hello, that makes anything better), and let this sadness rest here for a bit.

As always, thank you for reading and allowing me a moment of therapy.

xo