I Was Wrong.

(37 was one of the worst years of my life)

The year 37 has made the couple of years of single momma fear, just 10 years ago, seem a field of Big Fish flowers; Tulip petals soft, unfolding.

My life has had a subtraction that I’ll never recover (nor mention here, beyond this). Something that no one will understand, nor know completely, but the truth of which is honestly something I wish I could lie to myself about forever, in order to survive.

The year 37 meant pausing the beautiful communion and creativity that sustained; Losing parts of my soul along with every over-turned flowerbed, haunted stories in our heads.

The year 37 meant I had to learn that some humans will fight to see the good in even the worst numbers, and some will always talk about something or someone… but never with. We can’t control the math of heartbreak or humanity… We can only make sure that if someone asks to “see our work”: Our scribbles define dignity and truth.

But the year 37 meant failing, f*cking up, and barely hanging on anyways.

On a medical chart, the year 37 meant losing more strength than I’ve ever lost before (year 38 needs to hopefully add 30 to the total of my person, so please feel free to cheer that on), and it meant losing most of the merit of my mind too.

If I lived my life by the numbers, I would see that I’ve failed and fallen down more than I’ve flown, and I’ve lost almost all of what I love (truly) in just 365 measly days, but …

I don’t live my life by numbers.

In 2020, the median age of death for anyone with Cystic Fibrosis was 37 years old… and I am now 38.

I’m not taking the medication that has changed the median age for so many, but I am hopeful that one day I can. Until then, the number of hospital stays and surgeries should show you how hard I’m fighting to make my own end-age; To never be late stage anything… Because you can never stand on a well-lit stage too long.

I know that my spine is not likely going to get better (that’s why it’s called degenerative) and that my liver markers and “colon” calamities are not brightly optimistic either… But if I’ve made it this far ignoring the maths behind how and why we still exist, I can certainly make it farther still.

Our Gemma didn’t get to make it to 16, like she wanted… and so, for our Tiny Dancer, and for my Zachary, and for our George, and for all the others taken from us too soon: I must live this next year as if I have 16 more… yet not a 1 to be taken granted.

2020 was a year when roughly 7,010,681 were taken from planet earth in a blink.

Between 2023 to 2024, around 35,000 people have been killed due to one of the current wars raging on, and an equal 35,160 have been lost due to the other. I am not a mathematician, historian or fact checker. I am not on the ground, tallying each loss as 4 lines and 1 across. But I can say that as someone who’s a peacekeeper at heart and an art maker via limited skillset:

We are all the luckiest people on earth right now because we are alive on earth right now.

37 was one of the worst years of my life… and I entered it thinking it would be the year “the worst years of life” were finally put behind me.

I was wrong.

But with so much pain on the planet, and perfect Tiny Dancers waiting on well lit stages somewhere else: I cannot let a single year of limited, limitless life expectancy pass me by, no matter how much pain it takes to stay here.

I don’t know how I’m still here and I don’t know why… but even if the scars and shrapnel of 37 will haunt me until the day I die:

That is not this day.

To every surgery… to every degenerative domino…. To every parcel of pain: Let them write 4 vertical lines and one across. Because we are alive…

And you are not a number.

PART THREE (and end of this three-part-piece!)

See you tomorrow?

xo