Orkambi Video Diaries – Day 5

Today, I took a step back in a slightly longer video (it clocks in at 4:43 if you can bear it) to talk about my amazing network of friends and family, and what Orkambi really means for me, and thousands of others with my mutation, in the long run. As always, thanks for watching!

Orkambi Video Diaries – Day 4

Day 4 has so far been much better than Day 3 – thanks heavens. Coughing a lot but I can hack it…literally! A-yo. If you want to hear more about my mucus, watch the video above for the full update.

On Cystic Fibrosis, Loneliness, and Writing It Out

image by Rikki-Tikki-Tavi

I go back and forth  a lot when it comes to writing about Cystic Fibrosis (CF) – writing about my Cystic Fibrosis. Some days it feels so coded not just literally in my DNA but in my life experience as a whole that I couldn’t possibly share my thoughts with any one person, let alone an audience of anonymous internet readers. Other days I worry that writing about CF would put me in a box – forever stamped a sick girl who blogs about mucus. And no one wants to read about mucus. But it’s on days like today, as I sit down on my porch with a cup of tea and my MacBook, when I think, well, shit – I guess I’d probably read it.

The truth is, having a chronic disease is lonely. And when you’re living with a rare chronic disease with a high risk of cross-infection making it difficult to meet the few others like you face-to-face, the alienation can be tough to shake. Though I have an amazing support network of friends and family who constantly motivate me to stay healthy and happy, at the end of the day, none of them have CF. And when CF is freaking them out, they get to talk to other people in their exact same situation – other parents, other significant others, other siblings, other friends. They can meet for coffee and hold hands and say “man, this sucks.”

For the most part, my only interaction with someone like me is when I stumble across the occasional local newspaper story about a high school senior raising money for the CF walk. Or worse – the obituary of someone who’s lost their battle. And while any exposure to this orphan disease is more than welcome, Cystic Fibrosis isn’t all just fundraising and dying – at least that’s what I’m hoping.

“Solitude is fine but you need someone to tell that solitude is fine.”
― Honoré de Balzac

There are parts of this illness that I don’t want to think about, let alone scare my friends and family by saying them out loud. Maybe this stems from being a middle child – I always want everyone to be OK. But I think it also relates to the media’s portrayal of illness and our culture’s expectations and discomfort surrounding “the sick.” We want to be inspired by their bravery, by their indomitable spirit, by their thirst for the life despite the tragic brevity of their own. It seems the worst thing a sick person can be is angry or depressed.

So, here’s where I come back to the idea of writing about CF. But in the end this won’t be a “CF blog.” A little because of the difficulty and discomfort mentioned above, but mostly because I’ve got more on my mind than just my illness. Remember, there’s a whole lot that goes on between the fundraising and the dying parts. When I’m not thinking about CF, I’m thinking about a million other things I want to write about, things I want to do, places I want to see, snacks I want to eat after work. But I will include CF from time to time in these posts because I can’t shake the feeling that I’m not the only one disconnected by illness. Maybe someone else is perusing the internet like I have countless times, wondering how others with CF are getting by. Wondering if they’re happy, if they’re healthy, if they’re funny, if they’re angry, if they’re scared.

And if they stumble across any of my forthcoming blog posts, they’ll see at least for me, it’s often a combination of all the above.