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
On that one
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
The specialist you were made to wait three months to see
I can’t help you, maybe it’s trauma or stress , see a therapist, come back in
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
There wasn’t (there might be now but it’s grown out of this thing)
Neither of you can speak anymore and you cry
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.
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
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 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
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
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.
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
But maybe there’s something you
Things you didn’t ever think you could even Before
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.