Telling you the truth

But I won't yank your blankie away in the night.

This post kept coming out as an apology. No matter how I came at it, my hands tried to type I’m sorry.

I’m sorry I had to take a break.

I’m sorry I didn’t have the energy to write when I was buried in an avalanche of medical overwhelm.

I’m sorry I was too sad and too tired to write.

I’m sorry I had to lie in my bed playing Cats & Soup so I could disassociate from my body and the things that were happening to it.

The thing is, sorry isn’t the right emotion, it’s just the most accessible one, the easy one to throw out over everything else like those big colorful parachutes they let us crowd under once a year in gym class.

I don’t want to cover things up.

I want to dig down and tell you the truth instead.

I’ll start with this. I missed you.

I missed writing.

I missed feeling like myself.

Remember that cultural awakening a few years back where we all realized we should stop saying I’m sorry when we mean to say thank you? That felt like a watershed moment for me at the time.

Instead of “I’m sorry I’m late,” I tried “Thank you for waiting for me.”

Instead of “I’m sorry for venting at you,” I tried “Thank you for making space for me to talk.”

It felt huge to not constantly beat myself up for being human, and it felt significant to acknowledge the generosity of the other human in my space.

Wow, was it ever alien to not start an interaction by punching myself in the face, but recognition of the other person’s kindness gave me the warm and fuzzies. Soon I saw that this little shift helped our little shared space to grow.

I’m glad we learned that lesson. Too many of us are socialized into putting ourselves on the pyre over and over. We needed to cut that shit out.

We do need to acknowledge the support that keeps us going, not out of some obligation to a daily gratitude practice, but because it is also a part of the truth.

But I’m ready to take this whole thing a step further.

Most things that happen to us are beyond our control. We don’t like to think about that.

We like to think that if we walk every day and meditate before bed, our bodies will reward us with health and a long life.

We like to think that if we stuff hats and mittens into the bottoms of our children’s backpacks, the coldness of the world can’t reach them.

Of course our actions have a great deal of impact. The way we look out for ourselves and each other matters in their lives and our own. Our hope and our love and our striving is endearing AF and the best way to spend the time we are allotted on this gorgeous green planet.

The problem is with the other side of the coin.

Sometimes we need to think that the bad things that happen have a reasonable explanation, whether that’s some great mysterious god-knowledge, or the other person walking into it somehow.

We need to think we are immune from the terrible things we see happening to them.

We need to think we are safe and golden, that goodness is destined for us.

We try not to eat a judgement-fear sandwich about the people in our lives. But it’s a universal truth that sandwiches taste better when someone else makes them for you.

I’m trying to say this compulsion to feel control over our lives is within us so deep we can’t get to the roots. Maybe after a few thousand more years of digging out the surface weeds and heaving mulch over the top we will eradicate it.

For now I’m going to have to settle for showing you what I’ve ripped out so far.

When something bad happens to me, especially when it’s something bad that will be ongoing, I feel guilty speaking it aloud.

I worry that sharing my truth will scare the people I love.

I don’t want to crack the biosphere and make everybody stare into the black holes all around us. I don’t really want to stare into them myself.

I don’t want to steal your joy or your sense of comfort. I don’t want to yank your blankie from your hands in the middle of the night. I want you to sleep in softness and warmth until the sun kisses you awake.

Also, I’m afraid I’ll feel even more alienated if you do that very human thing of coming up with a logical explanation for what I’m going through in order to cling to your sense of control. I’ve done it myself, over and over, even when I tried to stay with you in your own moment of darkness.

I want to be able to tell you something happy to cushion the blow of my sadness.

There it is, I think. The reason I was finally able to write to you today: A big something happy.

I have it cupped in my hands to show you. An offering of something for us to celebrate.

I went to another eye doctor, an expert in diabetic eye diseases. He didn’t see any signs of nerve damage or bleeding or cupping or any of the stuff the other doctor did, and he knows what he’s talking about.

I almost jumped out of the chair and hugged him, my eyes bright yellow and tender from all of the tests he ran on me that I hope my insurance decides to pay for.

The relief was oceanic. I dove into it and let it soak me to my core. It felt so good.

I sat on the warm sand for a long time afterward, staring at the sea until I got chilled and the stars started to wink through the clouds.

That big scare is gone for now. But it will be back again and again. Eventually, one will take me.

I can see and I can run but beneath my beating heart, my own body is clubbing my pancreas to death and no one can stop it. A vial of blood pulled from my arm this week confirmed the fight is almost over. Soon this essential organ will be gone forever and there’s no way to step in before it’s too late.

That big scare is gone, but the dull monotony of this disease for which there is no cure will be with me for life.

The candy-colored needles and the insulin that smells like a new shower curtain liner, the little red drops of my blood perched on my now-concave finger pads, this manic roller coaster of dizzying highs and exhausting lows will be with me forever.

I am grateful for the quarter-sized monitor on my arm that chirps a steady report of my survival, even when it screams out when I’m trying to roller skate, trying to sleep. I’m grateful for the doctors who created the insulin without which I would not have lived past my early 40s, and to the lawmakers who finally capped that insulin at $35 a month.

(Thank you, but it should be free, motherfuckers. It should all be free.)

The grief and the fear — and the guilt — of this disease will be with me for life. I’m coming to understand that and I’m working to accept that.

I don’t think I’ll ever be able to celebrate that. To call myself a warrior or think of my persistent survival as a valiant fight.

I hope you’ll forgive me when I can’t find the silver lining.

I hope I can hold space for myself when I choose to ignore the bright side. When I wallow a bit.

I’m wishing so hard that my kids don’t carry this and my sister doesn’t carry this. I can’t watch them go through this, but I will if I have to.

I’m not sorry. I’m tired and sad and mad and grateful to be alive.

I’m happy my creativity rushed back into the space my fear carved out within me. I want to shout “I’m back” into the void and rejoice in its echo even though I know it’s not forever.

I’m lucky to be writing to you again.

I’m lucky to feel like myself again.

I wish we had more control over the things that happen to us. I’m grateful I can admit we don’t.

Thank you for making room for me to be honest. Thank you for staying with me.

I love you.

XOXO,

Shawna

P.S.

For when you’re sad

When I was wallowing in my grief over the last two weeks, I had the brilliant idea to text my teen and ask what she and her friends listen to when they’re sad. She made me this awesome playlist with some of the songs she and her friends shouted out to each other over their game of Mario Cart. I am so grateful I get to swim around with this awesome generation of kids, especially my own little wonders.

For when you’re mad

If you haven’t ever watched the Lemonade movie, you need to drop everything and do it right now. If you have watched it, you’re probably due for another screening. Beyonce is so skilled at expressing the depths of her anger and sadness — significant, generational, righteous fury — and offering a powerful and true redemption arc. It’s a comfort watch for me that lets me feel all of my feelings, and the music is incredible.

For when you need to escape

The strangest things help us cope when we’re going through hard times. For me this month, that’s been running a tiny, colorful little work village of cats stirring soup, chopping mushrooms and harvesting honey. It’s fun to earn little corduroy overall outfits for your cats, name them Barnaby and Clara Ann and decorate their rooms with seashells and pink pillows, and catch minnows from the pond you built for them to eat. Try to ignore the fact that it’s a cute labor camp as long as you can, and it’ll be a sufficient distraction from all that ails you.