Living Honestly as a Sick Person IS Too Much

Here’s your neighborhood stranger reminding you to keep going

I don’t really care the name of what’s wrong with me any more.

I don’t really care the name of what’s wrong with me any more, all totaled, because all totaled- it doesn’t change the fact that there is something unruly about my genes.

I’ve had many many many spine surgeries by now, and many many stomach and internal organ surgeries by now, and many many other things to help with these variations of Cystic Fibrosis by any name or stage, ON any stage.

Surgeries are not the most painful thing I go through or all that this illness is about… but it is the one that people can under the easiest.

So I share a lot about surgeries here, as if that’s all this life is. As if sickness is just surgeries. As if I’m collecting badges of flare while waiting for ‘Damn It Feels Good To Be A Gangsta‘ [Latin: explicitus] to credit-drop.

If I post about the “liver attacks” I get every 6 weeks or so that are a lot like pancreatitis in every way, and I did so every single time I have one… I honestly think those who are kind enough to read my rambles right now might “unfollow” (despite the fact I reject the term “follow” at all because we are all just humans here and I’m just a local neighborhood stranger who you’re pausing to have a conversation with on the corner. That is how I want to look at this place. That’s how I hope it to be.)

But if every symptom became a syllable… every side effect an affect… I think it’d be too much in every way.

Living honestly as a sick person IS too much.

It’s too much for those trying to be empathetic enough to ask how you’re doing on the neighborhood corner (my metaphor for giving precious time to one another online) and most definitely too much for those living it.

Am I even living it?

Can we even “live” this?

Sometimes people use language like “surviving” instead of living, or “thriving” instead of surviving, or whatever other catchy adage makes it feel like there is some empowerment over what is the ultimate powerlessness: Having no control over our body.

None of us really do in this life… But there IS a difference between fearing that one day you’ll get a Nicholas Sparks ending and facing the mysterious OR countdown-from-10 multiple times per year. (The latter of which, by the way, almost never actually happens. They just say “here’s some oxygen”.)

I can sometimes see a writer that I love appear again after what feels like years of not noticing their work… yet they never stopped writing at all. The social-spaces pick and choose who we get to see even when we haven’t chosen as much.

We notice a shadowban stillness and we wonder how many creatives whose stories we want to still see are suddenly shut off from us… and we start to shout. We start to repeat ourselves.

We wonder if we say it just once more, again… will the right person rally alongside.

So at the risk of silence and apathy instead, remember that teaching just one more person out there that people can “live” like us IS worth it simply by finding a way to reach them.

Sick people are still out here living in a world that’s hostile towards sick people without “short term” attached at the helm…

So, for as long as it takes and with as much kindness as we can, here’s your neighborhood stranger reminding you to keep going, keep sharing…

And say it again.

THANK YOU my Word Nerd friends and to all those helping this independent memoirist continue to work by upgrading to paid (which also helps my goal of gifting my every-weekday-writing for anyone who asks for a reading scholarship, no questions asked)….

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