because it's invisible.
The startling part of these writings to many of my friends and colleagues comes from the fact that I don’t look sick.
If you don't know me and read through this blog on resilience and chronic healing, you may get the impression that I am feeble or homebound outside of a pandemic. Or that I am desperately ill all of the time. I’m not. Chronic means you get sick, you run the gauntlet of healing, you get better. And very few people know outside of those closest to you.
Because it’s invisible. It’s in my lungs. My joints. My guts. For others with CF, it’s in the pancreas. Reproductive organs. It’s all on the inside. It’s called an invisible disease. Invisible disability. Both loaded terms.
If you scroll through the stories of CF’ers, we look like normal functioning adults. In fact, we may look healthier than more than half of your Facebook feed because we take meticulous care of ourselves. We have to. Laying around pools the mucus in our lungs.
I’ve always said the difference between terminal and chronic illness is this: in terminal illness you must accept death. In chronic+terminal, you must accept life. We have to learn how to live.
So why is this so pertinent now? Because I worry for us in this new still-in-a-pandemic-but-pretending-it’s-over reality.
If you know me, you have most likely heard me cough. I cough all of the time. I have to. My lungs are typically packed with putty-like mucus that I have to clear to breathe. It’s a low, deep, growling cough. It’s not contagious unless you have CF. We harbor bacteria that are hazardous to one another. Not you.
If and when I choose to go out, in my mask, and I cough, what will happen? There is a new stigma. Not new to me. I often get side glances and sometimes even comments like, “What did you just give me?” Seriously. It was at a professional event by a young woman sitting next to me. She carried on about how she had just gotten over a cold and didn’t need to get sick again. It was embarrassing and I will always remember how she made me feel. But, she didn’t know me or anything about me. I expect a lot more of that to come.
Here’s the thing. Having CF is a lot like having a double life. Many of us driven by our health issues, but NOT defined by them. (I think this is why my friends+family+colleagues are always so surprised by my newfound voice through writing. I did not admit to CF for most of my adult life.) We are professionals. Out in the world we are thriving. Until we’re not.
And I feel the need to qualify my life outside of CF and my accomplishments because….I’m not sure. Because sometimes CF or other chronic illnesses make me feel small. Maybe I’m compensating for that. For the way that young woman made me feel.
I am not just laying in a bed (most of the time). And if I am, I am usually working. Or writing. Or getting up to do yoga. Or riding the spin bike they put in our hospital rooms. As I get to know the CF community I find CF’ers who are doctors, physicians assistants, personal trainers. I also find CF'ers who cannot work but still lead community efforts. It seems to be a pattern that those with CF don’t just lay down. I know we don’t. Because if we did, our lungs would fill up and we would die.
So when this new world opens back up, and I have to return to my job that requires travel, and I get on a plane, and I sit next to someone with my mask (which I’ve worn for 10 years on planes because planes are gross)…. See what I’m saying. Because I know this - we are a highly judgmental often quick-to-condemn society. I can hold up a million cases of vigilante-type social media justice to prove it. In fact, last week as my daughter picked up our take-out order, an unmasked guy walked out of the restaurant and said to her, "Why the fuck are you wearing a mask?" Seriously.
I cannot even imagine returning to the world right now. Maybe ever. What is our new impression of people now that we are born into a global mindset of fear of the invisible?
And the same goes for me. I’ve been watching people cough and sneeze into the abyss like their spittle doesn’t stink. For years. Not washing hands leaving the restroom. People, it’s disgusting. What kind of accusations will I make in my mind when I see this now? In an overthinking mind, probably quite a few. I’m actually not sure how to feel safe out in the world again.
And the guns. And the insistence that masks and immunizations are mind-control. It’s insanity.
Remember that moment in time after 9/11 when thousands of people were killed and we all gathered up our sense of community. I think our last count of people killed in our country is 100,000. One hundred. Thousand.
This new world needs help. And I’m not sure I see a place for me in it, yet. I see news reports of massive amounts of people gathering along South Boulder Creek in Colorado and having pool parties across the country. I read accusations that this whole thing is a hoax. Some of my own family posting things on social media about losing their liberties when being asked to wear a mask. I know they are in the minority on this, but damn are they vocal. Like that guy who tried to intimidate my daughter. And that is directly threatening to me and to others who are already at risk. And may look very healthy.
And this isn’t just about me, although my fear factor is ratcheting up. This is about all of us. It’s a reflection of our ability to function as a society in the face of something dangerous. But, also invisible.