If You Look Only at the Inside of My Arm...

Saying the term “pediatric cancer”, in of itself, seems insensitive to me.

Welcome to a new week Word Nerds!

My Substack is where I am able to express myself creatively, share on all sorts of topics (not exclusively sickness) and it helps me to archive this “ongoing legacy” that I HOPE is the continual memoir project I’ve started.

Here, anyone who needs or wants a scholarship gets one… because kind friends help support the writing there, even if it’s just $5.

I write (now) every Monday, Tuesday, Thursday and Friday (barring emergency… and sometimes, even then).

Why check out my column on CF News Today every Wednesday?

It’s the place where I write about illness with much less prose, and a lot more clarity. For some, this sort of “to the point” approach to medicine is refreshing when trying to understand a complicated disease, new test results, or any other sort of updates.

But here?

Here is where we (hopefully) get to hang out- imperfections, typos, and all.

Hopefully you enjoy some new words cooked up just for you.

xo

I have the words “my goodbye sweater” tattooed on my right wrist like a bracelet.

If you look only at the inside of my arm- like most phlebotomists must do to access much of anything - all they see is the word “sweater”.

Just… “sweater”.

Written in the handwriting of my gloriously dyslexic teenager, who had to scrawl it physically ON my Angelina-Jolie-skeleton-hands (they’ve always been that way so I’m just painting the scene with accuracy), pen to skin… which was not the easiest ask.

I remember my friend Sam laughing so hard as we got the tattoo, despite the heartbreaking circumstances of losing Tiny Dancer to pediatric cancer during that time, while rushing around getting $50 tattoos in living-room parlors.

None of it felt smart.

I’m pretty sure Sam and I called my tattoo dumb, even… but in a good way.

(Nothing makes me feel more loved than when she gives me sh*t.)

Saying the term “pediatric cancer”, in of itself, seems insensitive to me. As if I’m somehow infantilizing the very extinguishment of human life and meaning and matter. As if I just put a PG sign on someone’s suffering, or added a Fisher Price tag to someone’s end.

I’ve written about the real origin of the tattoo here before, though I don’t aggrandize myself so much to think anyone actually cares one way or another given how saturated social media is with every little antisocial thing we do. (Like Pete Davidson once vaguely said on Hot Ones, “No one actually cares what shoes you’re wearing.”)

But I’ve been thinking a lot about the abnormal honesty that should come with an abnormal life… yet, doesn’t.

We are taught this fact in order to keep our jobs, and stay likable, and not feel whispers of those who haven’t even been in these pairs of shoes we are wearing (and again, should we care that much?) And, frankly, I don’t want to end up on a subreddit for just… existing.

Sometimes, I can’t even call it existing, but yet… I am.

I exist like the faint, funked-up tattoo of “my goodbye sweater” on my right wrist, derived from the intentionally “anticlimactic”, perfectly subtlety-suited, almost-closing lines to Our Friend, wherein two friends who’ve just endured the worst of witnessing sickness in another attempt to step back into their lives, and Jason Segal says: “I put on my goodbye sweater.” (Naturally.)

I exist like a pair of hospital socks that are three sizes too big and have tread on them, as if the bottom of a toddler onesie when learning to walk; No one really trusting their next step in any particular direction.

I exist by taking a weird pleasure in knowing that (without knowing the deeper meaning or sad backstory that should be known), some nurse out there might think I just messily scribbled “sweater” where one would normally strap a watch. As if I needed the reminder to grab one that badly.

I grew up in a family where my Momma always said, “Don’t forget your sweater”… And I have come to learn, as I’ve grown and grown, that being an adult can sometimes stand for much more about losing things than it is about growing into them.

My youngest is at an age right now where she is beautifully self-aware of how “teenager” she can suddenly be, and gorgeously generous at swiftly apologizing for that with which she sometimes can’t control.

“Our house has so much peace at this point in our lives,” she said the other day, which doesn’t mean that the grief is gone… it just means that grief isn’t a green any more.

We mourn in other ways; Things I’ll never write about. Things I wish I could be wrong about for as long as it takes. But she is right in that- most of the turmoil we face at the moment isn’t career related for once (joy on the horizon?), or because of some new ax befalling an exposed neck: It’s mostly because of pieces non-paper that pop up on inaccessible portals.

Non-paper that says things I don’t want it to say. And then I hold it inside (because that’s healthy?), and talk about needing to talk... and then never talk about it. (I just halfway write it here instead.)

“We pretty much never fight,” Follin said, as she was winding up for an apology despite the ‘peaceful honesty’ truth: “Except…

Sometimes my social battery is drained and I’m really cranky and tired after school and… I know I’m kind of rude to you.”

“I’m sorry, Momma,” she says, always when I’m not expecting it, “I didn’t mean to have an edge.”

But do we ever grow out of wanting a Momma who reminds us to take our sweater when we leave the house, lest we get cold?

I don’t think so.

We just grow IN to pushing more, and pulling less.

I look down at my wrist sometimes, and I see my teenager’s handwriting- messy and fallible and apologetic and trying… Always trying…

And I think about what it means to be a “Goodbye Sweater” friend, even if I’ve written about this before and should, should, should again.

And I don’t think that I am.

A “Goodbye Sweater” Momma? That I know for sure.

But friend, sibling, partner?

Always trying… but never apologizing enough.

PART ONE.

More tomorrow!

Today’s writing and tomorrow’s super goes together (even more than normal), so definitely hang tight until you can try to piece them into one.

I wanted to post it all as one thing, but it was so long that I felt like I should have some standards for how many words I throw at the world when words hurt me very much to type and make (you know?)

So yay for trying to have a little bit of restraint for Pain’s Sake (?)

But truly: Let me know if you like them once read as one?

PS: Kindly consider booming a supportive Word Nerd if you’re able (every little bit counts) to help keep this work going…

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