I Wish I Had More Texts From My Friends I’ve Lost

I hate using the word “fighting” when it comes to health

Life is too short to be trolled to submission.

I hate using the word “fighting” when it comes to health because it’s really just “daring to exist in a body that some applaud, and some don’t understand are full time jobs, and some want quick easy answers from, and some dislike because they don’t exist quietly”.

But sometimes fighting the perception of what "fighting" should look like is harder.

I find myself exhausted by people’s lack of in-person perspective about life’s many ails and wails. Those who don’t understand in-person compartmentalization as a life-thread for survival.

But people who are ‘stalkery’ enough to take time away from their own lives and bodies to digitally dissect someone else’s (?) are just showing how little of a life they have (?) and I don’t understand the underhanded power to be felt in that (?)

(Like, Buddy, do as Buckley said and get a lover. Your loneliness and lack of life be showin’.)

A word on those words:

What I just said was mean (truth can be mean), so I’m also sort of sorry.

But if someone is feeling mean because they just need a friend… Reach out before you lash out. Always. First. Foremost.

A word on all the words:

Not everyone gets “attention” for being sick.

Before my last ‘would-be surgery date’, I had 4 people text me out of the great many I know and worked with at that time. Why am I saying this? Is it to make anyone feel bad? No.

I am one of the world’s worst “texters”, so the first person to NOT judge someone for not reaching out. Sometimes, life is so intense that I’ll look up and blink, and realize an entire week has gone by and I don’t know what date it is anymore (adulthood™). My best friend in the entire world forgot my birthday last year because she lost track of what date she was existing in, and the year before I forgot hers. We didn’t forget each other’s actual birthday dates (if you had a Trivia Night on everything-about-each-other, we would win, 10/10)… But we truly lost track of what the Calander year was doing in and around us.

That is human.

That is all of us.

I don’t blame others for losing track of time, slippery like sand… Nor, how hard it is to see every person’s Instagram story or Facebook post or update about anything. Algorithms work against and we get accidentally shadow-banned from seeing someone’s words for years at a time and we don’t even realize or choose it. We lose people in the abundance of people that we are supposed to find every single day.

But sometimes, even when I’ve verbally said that a surgery is incoming to a large swath of friends, for example… I get one or two texts from a few tender hearts.

“Thinking about you” my phone says, when I awake with bleary eyes, and I smile more than I’ve ever smiled, knowing that someone who knows the worst of me, might still think I’m worth those three precious words.

Time changes us. Adulthood makes us see the bad parts of everyone. It shows our cracks and ugly places; Our scars and sh*tty qualities. Time takes us and turns us so quickly that we can’t spot to stop from feeling dizzy.

And we occasionally wake up and blink, and realize we don’t know what date it is… Even though we would never forget the date, or the pain, or the celebration of the people that we love.

But we do forget ourselves… and where our bodies have landed in the calendar year.

The truth is (like I said yesterday): Sickness makes most of us uncomfortable.

It makes ME uncomfortable.

Not everyone wants to talk about that.

“Fighting” is such a bullsh*t overused phrase in sickness terminology.

Because I need to have a great many surgeries soon to grip the sand that is time in my palms again, I am suffering with symptoms I haven’t felt in a long time.

My Nissen Fundoplication brought my lung function from 26% on supplemental oxygen, and a surplus of lung infections and chunky coughs (ew), to being a dancer who barely ever coughed around her friends and blended in like a normal person without a husky mating call.

Now, because testing has shown that my ongoing theory was right (that my funds has reached it’s natural timeline limitation and begun to stretch out again), I can feel the impacts of aspiration, which means a breathlessness so undeniable that I borderline can’t deny it (denial being one of my top resume skills).

I’ve had times in recent weeks where I wish I had supplemental oxygen again, just for the days when it gets too heavy.

I haven’t said anything to anyone about it (this is the first time, by the way. Thanks for being my first), but I am working up the nerve as I wait to have the Fundo re-done-o.

We aren’t sure when, or even with whom yet (working on it)… But I know it’ll be a positive…. a life saver… a good thing to rush like a sorority boy with an insecurity complex.

This has been happening for awhile… But I’m very secretly-private, and very good at hiding secrets. Only my best dance friend knew that this was becoming a major issue when I was still teaching and directing, and would see me frequently whisper to her in sign language that it was a breathless day- making it hard to project loudly to a room of amazing talents.

My chest would get so tight, that it would feel like a blood pressure cough along my left side- making me think (more than once), that I was having a heart attack while driving home. But- thankfully, in a weird way- my GI surgeon was able to help decipher the reason for the rhymes… And it turns out that it wasn’t my heart or my lungs flaring up, directly, but rather- my out-dated fundoplication beginning to set me back in time against my will.

Oxygen, and on-and-off shortness of breath, is something I’d put behind me for awhile now; For forever in my dreams.

Oddly, oxygen is something that had made me some of my most beautiful friends long ago- when Instagram and having any variant of lung disease meant being part of a whispering club of slow-walking weirdos. Connecting through cannulas. Writing in long eager paragraphs across even longer distances- Finding Hazels and Gus’es among the many hearty, able-bodied boasters.

Recently, someone wrote me the following and I laughed so heartily out loud. He said:

For those who don’t know, Trikafta is a life-saving medicine that has completely prolonged and changes the futures of most of my friends with Cystic Fibrosis. Some gain like 40 pounds they desperately needed in a matter of days. Some wake up suddenly with no cough and no need for O2 anymore. Some have a pancreas that comes back from the brink, requiring less Creon…. or Cystic Fibrosis Related Diabetes that becomes a lot more manageable… or sinus disease that suddenly doesn’t need a surgery every single year, simply to protect their lungs, and brain, and everything.

(We forget how life threatening our sinuses can be with CF, but I once lost a Salty Girl because her sinus infections became so unbearable that they infected places no one should ever imagine, and she passed away. To this day, I think about her and her daughter everyday… and wonder how many of us don’t take our sinus infections as seriously as we should.)

Unfortunately, this Magical Perfect Drug isn’t actually magical and perfect for everyone, and so some of the same friends have had to stop taking it because it impacted their mental health so severely that they would not have survived much longer, or because of other complications.

However, because it (thankfully) exists, and has made “my generation” suddenly become the first generation of CFers to actually see the next few decades, we forget that a great many with contrasting side effects or non-qualifying gene-types (like me) are still left out in a frozen sea… Swimming around with no life vest, not wanting to start screaming to “give us room on the floating door” because we are just thankful that our Roses are dry and alive for once.

Regardless of the need for awareness of those who aren’t benefitting from miracles right now, or my original rant about health-trolls who take pleasure in disarming someone else’s assumed treatments or timelines:

“We” have no problem not caring about someone’s mental or physical health when we can’t see them.

We refuse to see that how we treat others IS who we are. 

Maybe there is something wrong with me (?) and I wouldn't survive evolution or being Naked and Afraid in anyway but: I never feel motivated to talk about other people's lives unless they're inviting me in to do so.

I never really march into someone's “room” and pick a provocation (which is sort of how I look at someone's space online, as well), nor worry myself with how anyone else should be managing their lives.

One example I think about often is how I never (and I mean never) think about how my siblings, or nieces, or nephews, should live their lives (there are a lot of them so that'd be a full time job). All I worry about is if they’re happy.

If we enter someone’s metaphoric bedroom and tell them what to do and who to be: No one will ever be happy…. So why do “we” (the outside world) always consider ourselves the authorities on someone else’s self?

If I'm talking with a friend and that friend says, "Can I be petty for a second?"... I am a human.

I still talk to people about people more than I should, but- for the most part- I believe that we should fight this instinct. It never makes the world better. It just doesn't.

I wrote this week about being a “in the woods by myself” type of a person and, with that, comes a dose of “curse”.

It means I'm not picked first for the volleyball team, very often... because I'm hiding off on a bench somewhere…. but it also gives me plenty of time to talk in the way that feels more historically hopeful than hateful:

I scrapbook in sentences.

(Too much, obviously.)

Some words should always be repeated… And some words should be hushed into the Redwoods of society. (Remember: “It never makes the world better”. It just doesn't.)

I think so often about future historians when it comes to words and opinions about other people’s words and choices within them.

I think about how most of the things we take the time to document- not the few second clips or the trends or the Toks- but also the walks in the woods, inviting others alongside.... How grateful would a great-great-grand be, to find these feelings one day?

Be it for science, for history, or maybe even for no one at all (just the trees): Aren't we often thankful to find an old love letter, or description of a dream, or - most of all- a delicate, dallied diary, no matter the place or time?

So, when the world says, "Why do you write about these things?", I always think about someone like Anne Frank and how- even though none of us are her, or going through what she went through- she also didn't think she was she when took down thoughts in ink.

She didn't know that her varied verbs would change hearts and minds by making others relate and revel; That some of the best ways to make a mark in this world are literally to quietly "mark" in metaphoric marker, because that's often how we empathize with causes and chasms.

As I round off some recent ruminations on a lifetime of ruler-whipped palms for being a little too much of a “March girl”, I’ve come to the final conclusion that I’ll carve on caves until I die.

I wish I had more texts from my friends I’ve lost.

I wish I had more photos of the women in my family who didn’t want to be caught in an imperfect pose or position.

I am not ‘going down’ without leaving as much as I can behind.

The thing is:

You can’t make negative people see positive things in negative things. 

You can only document the positive within the negative…

And rebuild and rebuild and rebuild…

And hope that one day someone will see you “never quitting” when you want to…

Even if that someone is just you. 

Thank you for this week together! I’m so grateful for you and hope these wordy-words can keep going for as long as possible