A Letter That Says A Thing Or Two

Okay, you guys.

This is the scariest thing I’ve ever written in my life. I cried buckets while I wrote it and at first I thought I wouldn’t post because it’s so incredibly personal, and it’s also WILDLY long, like over 2500 words and I feel like no one wants to read that many personal words.

But I can’t stop thinking about how maybe one person somewhere out there needs to hear a story like this and feel less alone or like there’s some kind of hope.

So. This is an a letter I wrote to myself about getting sick and coming through that whole experience. If you’re the one person who needs to read this – I hope it helps. And I’m always around to tell you things get better and it’s going to be okay.

It happened right about this time, three years ago.

It’s still a little early – would you have used these last three weeks differently if you’d known what was coming?

It started with the hiccups.

At least that’s what you thought.

You sat at your desk almost one full year into your first real grownup job after college, your first apartment. Things were infinitely perfect and you didn’t realize how much so. You were accepted to grad school, you were respected in your job, you had taken the leap and auditioned for community theatre and you starred, you got your wish, you took the last bow and you were successful there too, the show did so well it got extended, the entire office came to your opening night and you had never been so happy and found the world so full of incredible things. You knew who you were and what you wanted to do, and every dream was huge but possible.

And then it was the day before your 22nd birthday. And you got the hiccups. They were weird though, your stomach moved more than your chest. The muscles along your ribcage pulsed, in and out, no rhythm to the movement and you told someone later you thought it was weird but you didn’t think much about it and oh, you, if only you’d known would you have done something different, would you have gone done said watched worked climbed
Adventured
Differently
On that one
Last
Night?

The next day you had those same not-quite-hiccups again, and by the next day after that there was this tightness in your muscles, an ache in your joints. The not-hiccups were big now, noticeable, pulsing uncontrollably through your body in waves.

They thought it was Lyme’s.

That’s what she said, the fresh out of college doctor on call. Mom came that weekend and she saw it and you watched black and white tv with your head in her lap and she stroked your hair and made a song out of your name as wave after wave of cramping twisting pulling pain started across the top of your stomach and eventually all through your torso up into your shoulders and head. After that weekend
At Grandma’s, when you kept having to duck out of the room and hide in Grandpa’s room to let it tear through you
(you were already learning you had no control but you could hide)
And Mom made excuses for you
And it seemed like everything was too loud, too bright
And your aunt lay on the bed next to you and held your hand and asked what it was like and you didn’t have words
(the first time, no last in sight)
After all that, Mom said you had to go in so
You sat in the doctor’s office
And she said it was Lyme’s.
You believed her because
Back then doctors knew things
They could help
But most importantly you needed it to be true.

If you knew then, would you have embraced those last minutes, hours, days before the breaking?

You took the pills and you waited but it spread. Now when it happened, your toes curled, your calves turned to rock, your body twisted, it hurt, you were afraid
You started cursing
You didn’t cry.

Back then you had the privilege of keeping some things sacred.

The second Lyme’s test came back negative and there were more doctors, 3-4-5, white coats and waiting rooms and you had to tell HR so they could put you on Family Leave, so someone, anyone, could tell you what was wrong
No one did.
You knew you should be thankful for a job with benefits like FMLA and you were but oh, God, you were 22 and were you dying? And all the doctors did was stare and say “never seen that before” and give you pills for stress, things that made you dizzy, gave you hallucinations of people in your apartment, made you stupid, made you sad, filled you with doubt about who you were and who you were becoming.

They said it was living away from your family – five hours away
They said it was grad school
They said it was your job
They said it was all in your head.

They said and they said and they said but meanwhile you sat at church through the October memorial service watching the slideshow of people who’d died that year and you were gripped by the deepest darkest fear that it’d be your face up there the next year

And they still said, but
It was November and you had to sit in a staff meeting and lose those shreds of privacy you were clinging to and tell them all that you were sick
Sick with something
No one knew what or why

They were all sympathetic but you couldn’t drive anymore; your whole job was home visits and teams and a few weeks later you heard someone you thought you could trust asking sharply why you couldn’t just deal and the SHAME
(you got so accustomed to the shame but you weren’t then and it was so heavy)
Weighed heavy on you.

The doctors said and said but it was December and you dozed off midsentence in front of your computer at work from the drugs
You lay on the conference room floor jerking and flailing and twisting
You had to be helped out of a client’s – a client’s – home
You scraped by with B’s in the first semester of Saturday grad school and you were still working forty hours a week on top of that so no one understood how much it hurt
-you’d always been at the top of the class and now when you read textbooks, heard a lecture, wrote a paper, it was all through gray fog that ate up the words and the meanings
-you’d always worked harder than most but now you were tired, so tired, and you couldn’t connect to your clients, you were behind on case notes, your teammates were picking up so much slack and you knew it
You knew they knew it
It tore you apart.

You’re 22. You can’t drive. You call your parents every night so they know you’re alive.
Someone else shops for you. Cooks for you. Does the laundry, the cleaning, helps you study
Holds you together.

Your coworker drives you to and from work every day, covers for you when you’re on the floor in the conference room every hour, takes your pulse and blood pressure. She makes you food, introduces you to The Big Bang Theory, helps you feel like you can still laugh. She doesn’t run away from the grotesque twisting cramping breaking of your body. She knows to put pillows under your head, clear away breakable things; she massages your hands when the muscles cramp and make them into claws.
She’s your best friend.

You can’t wear heels anymore. Sometimes books are too heavy and you can’t read. Sometimes your eyes won’t focus.

Often you’re alone.

You’d lost twenty pounds when you did theatre, you were fit and thrilled and felt beautiful –
-Forty pounds came with all the pills and when you watch videos of yourself to catalogue symptoms, though your body is writhing contorting shaking so violently, all you see is your fat
It only adds to your burden of shame.

You go home for Christmas. One sister won’t speak to you and you’re pretty sure it’s because for months now your parents have driven down every weekend, five hours there, five hours back, to take you to classes, pick up groceries, go to appointments, make sure you’re alive and they don’t miss any last moments

She might hate you because everyone’s lives revolve around you now

And the craziest thing is that you feel like you have no life at all

Your baby sister, who you love nurture protect finds you on the floor on Christmas Day and cries.
She asks if you’re going to die.
You don’t know.

Three days later a woman with short dark hair
Wire rim glasses
Thin lips
The specialist you were made to wait three months to see
Says
I can’t help you, maybe it’s trauma or stress , see a therapist, come back in

Six

Months.

You’ve already been diagnosed by a therapist back when the first doctor sent you there – “Not mental health related, send to a specialist.”
She was the last hope.
You and your mom drive home together
Through cornfields heavy with snow
She asks if there’s anything you’ve never told her
Pain-grief-fear
There wasn’t (there might be now but it’s grown out of this thing)
Neither of you can speak anymore and you cry
So
Many
Tears.

You go back to your doctor, a poor family physician who’s kind – who hears you – who’s stuck with you, believed you – been a safe place
Her righteous indignation makes you feel you might be alive after all

She has one last idea. One breath of hope. Another pill.

You’re 22 and you don’t even know (broken up fears, terrors, sorrows, losses) who you are anymore.

You say yes.

It’s gradual. This thing that’s dominated your life doesn’t recede into it’s black pit so easily.

A digression: you’ve been awake every second.
Every cramp. Every pulse. Every twist. Every yank. The way you describe it now is like a seizure, but more violent and you’re awake
For the throbbing, the pulling, the twisting and turning
The smell of electricity, the feeling
Of being Awake
(like the warning your body sends when you have the flu and you know when you’ll vomit)
You’ve been Awake every single horrific second.

In March, you sit behind the wheel of a car for the first time in six months.
You drive up the hill to Walmart.
You buy something.
You drive home.
It feels like the whole world is singing.

You ask the doctor for more of this stuff and less of all that garbage that’s made you so slow and stupid and helped not at all.
You’re still on the floor, but five times a day now, not eleven.

You feel reborn.

There are ups and downs
You’re not dying
But if it’s what they think it is
You’ll never get better
They can’t say for sure because the insurance won’t test you when
There’s no hope of a cure.

You almost don’t care because
Now you’re only on the floor two or three times a day and you drive, you get accepted for an internship, you’re much braver than you were but also
More solemn, more isolated.
Quietly grieving.

Your life is becoming yours again but you don’t recognize it.

Time passes. Your birthday makes you cry. People say how did you do it how do you now you always smile you’re so kind you’re so brave and you
Talk about your faith, because it’s been the single slim line keeping your from drowning
Talk about small blessings because you’ve truly found them to be abundant
Talk about family, one or two incredibly loyal friends, coworkers and an office like family

But you try not to mention
Not now
Not ever

How the weight you gained sticks with you
How you’re prisoner to the night because the flash of headlights in the dark gives you symptoms
How you have to measure activities by the strength you have left
No bright or flashing lights
No startling
No loud noises
Avoid crowds stress strain busyness exertion (life)
How you’re afraid you’ll never get married because how will anyone love you?
How you’ll always need more help than you like, be reliant on strangers sometimes
How it’ll never be the same and you’re
Always
Waiting
For it all to crumble again.

You see the short haired thin lipped doctor again.
She’s pregnant now. Her life went on.
She can’t believe her eyes.
You’ve never hated someone before now
But if she’d just looked
Past herself
At you
Maybe so much wouldn’t have been lost.

You do an internship. You change jobs, you move, you increase meds now and then.
You’re careful but busy again.
Sometimes you’re still on the floor.

You get your master’s degree (graduation is all bright lights and noise, you don’t go, you don’t grieve)
You get a job
Buy a house

Sometimes it catches you unawares
That this is who you are now
Can’t separate yourself from your disease.

You still can’t imagine anyone will ever love you “that way” (the lifetime kind of way)

You miss theatre, driving long distances or after dark, not planning pills and energy levels ahead, trusting doctors, steady hands, close friends who fell away, believing in your body and yourself, not being such close friends with shame.

You insist on trying everything at least once just to see if maybe somehow you can handle it okay.

You find joy the way you always have – somehow you’ve always been gifted with eyes to see. Sometimes you take that for granted but not as much anymore. You build a life again.

Time passes.

Now it’s time to let go. It’s going to be your birthday again and it’s hitting hard somehow because you’re officially in your midtwenties and you feel like you lost
So much time
So many dreams
Innocence and belief.

And you grieve it, grieve with silent wailing, calm smiles, a constant sense of bittersweet
But you can’t change it.

You’ll probably not star in a show again. You won’t be able to mow your own lawn, travel will be unpredictable at best and not real safe, you’ll always have to decide when (not if) to disclose, your hands will always shake, you’ll be weak, people will sometimes think you rude, standoffish, selfish, strange, gross, broken, hard, because sometimes you
Just
Can’t.

But maybe there’s something you
Can.
Things you didn’t ever think you could even Before
New dreams
Brighter stars.

Oh, you. You can’t reach for those stars with both hands holding so tightly to the past.

Stand on faith. Exchange your shame for humility. Accept that your fear doesn’t make liars of people who call you brave.

Something happened to you. It tore you up, carved scars in your heart, left the print of something heavy on your soul.
It does not define you. Only you do.

Soon, it’s your birthday. The Anniversary of something much bigger than a disease.

Today is the beginning of everything you make it to be. All of this is not your story.
It’s still unfolding.

The One Where It’s Finally Done

This is a story about strawberry tea and sparkly star stickers and avocado fries.

It’s mostly about doing impossible things, the importance of having people to complain to until your face melts, and why you should have a really nice chair at your desk.

It’s about how I finally, Finally, finished the book.

A brief review: In January and February I revised a different book. It was hard and it was long and then it was done.

In March, I did…possibly nothing. I know I wrote a 10k short story, which you can read right here on the blog, and I have absolutely no idea what else. This is not uncommon for me. Nothing to see here. I do know that I went on vacation and stayed in a gorgeous hotel and walked through some ruins and started dreaming about a book.

In April I did Camp Nanowrimo and tried to give that book some guts. I got 20k in and I realized there was no story there. It was all too clean, dry, dull. It was already boring me and if something bores you at 20k, my friends, just don’t force yourself through 50-70k more. It’s just not worth it.

In April I also moaned and complained and blogged and fussed, until I suddenly realized what I was really telling was the story of a somewhat villainous girl with a stone for a heart and a whole lot of fears hidden away underneath it. Then I found the story.

In May I worked on the book. Which is to say I wrote in fits and starts, interrupted by days of staring at the ceiling or reading books so I could hide from how scared I was of the book. I talked people’s heads off. I brainstormed via DM and email and I’m kind of surprised I have any friends left. I was grouchy, irritable, and then giddy sometimes. The story inched along, and it got bigger and deeper and darker. It started a body count.

I started getting cramps in my forearms and elbows.

In June I started the sticker system again, annoyed with my brain and my apparent need to only write 3-4 days a week instead of six. I’d never written a book so slowly and it was slowly crushing my confidence.

And then it wasn’t. It wasn’t slow, it was bloody, there was a lot of kissing, my back was aching from the hours in my antique, lovely, awful chair, and there was Progress happening. I only missed two days of writing between June 1st and today. Aside from those, my lowest wordcount for a day was 1500. The last two days, Monday and yesterday, were 7k and 11.5k respectively. That’s right, I finished this book exactly the opposite of the way I started it – in April it was a creeping, miserable thing. In June it was a marathon fueled by avocado fries and tea from my lovely OTSP secret sister, the encouragement of my very, very lovely and sweet and understanding first reader, Pinterest, Woodkid and Two Steps From Hell, and a kind of satisfaction I’d been missing before.

Finally the story is right. It’s not necessarily good, y’all, good takes more time and I already have a list of things to polish up, but it’s very solid. Much more so than usual. Which makes all that extra time and frustration very  much worth it. AND IT’S DONE.

Usually I write six or seven drafts of books per year. In 2015, I’ve written one. This one. And where that used to scare me, now I’m a little bit proud of it. Because I know it’s already on it’s road to being what I want it to be – what it’s capable of being. And that’s what any writer wants for their story.

I wouldn’t be surprised if I’m back in a week or two weeping and tearing my hair out over how it won’t polish up as shiny bright as I’d like it to. But I finished a book, y’all. And if you’re staring at a screen or a page and moaning and stuffing yourself with cookies, let me just encourage you – it is, it is, it is worth it in the end.

If you’re the sort of person who likes to see these kind of things, I’ve included a little scene below from this draft. Words in the rough, you know.

You guys, it’s done.

They climbed the steps into the ruins themselves, and she was swept by a silent awe that nested in her bones, wove itself through the fabric of her skin, laced itself through the slipping furious strength of her blood. Evian’s hand fell from hers as he walked slowly across to the far wall, running a hand across the stone with head bowed as though he absorbed the whispered pleading prayers of a nation through his fingertips over the rough façade.
She felt loose. Untethered. It was a heady sensation.
Marguerite turned slowly the way they came, staring out across the sun-dappled gravestones to the river beyond, flowing blue and green and fast along it’s path. She felt it’s movement, wild, in her veins.
The high arches where the bells used to sit framed a sky so blue it made her breathless. Low branches of trees hung overhead, drooping down over the stone walls into the dirt courtyard they stood in and sneaking through the wide square windows carved into the stone. There was nothing but rock and sun and late afternoon breeze, ripe with spring and lilacs blooming somewhere beyond the walls. The silence wrapped itself around her, easing the pain in her side, the burn of her cuts and the stitches woven through them, and the aching gape of her fear of the future.
She sat on a low stone stoop leading down into one of the copses standing diligently on either side of the arched entrance to the ruins and tilted her head back, letting the sun fall full and hot across her face, washing away the damages.