I don’t have an introduction. I don’t have a thesis. I don’t have a conclusion. I don’t have a main idea, I don’t have anything that you should have when you write something longer than a Tweet.
I have memories. I have flashbacks. I have a few photos.
So this happened. There is no rhyme or reason to this, just the need to share it, because this is my beginning. It’s disjointed. It’s just memories. That’s it.
This is part of what happened in 2003.
And to have made it 20 years,
is so big.
TW: disordered eating, chronic pain
Getting my first small flare ups and figuring out walking helps sometimes. My saint of a Fourth Grade teacher writing a hall pass for my best friend and me to run errands around the school and let me walk for as long as I wanted. The implicit trust my teacher has in me to listen to my body, when I am only 10-years-old. The way she can look into my eyes and understand me. The way this kindness and trust is so rare, so I hold to it tightly.
Starting to flare a half hour before my Virginia History standardized learning exam. The vice principal coming into the classroom, leaning down over me, imploring me to push through the pain because the test is too important to miss. My angel teacher kneeling down next to me, telling me I’m going to do great, that there’s nothing to worry about. Crying because I couldn’t care less about the test, I can do this in my sleep and still score higher than most of my classmates, but my body is acting up for no reason at all. I am in so much pain I can’t breathe. Can’t breathe or don’t want to breathe. I ask for my mom to take me home.
The first Big Flare. I’m in searing pain but still begging Mom not to take me to the hospital, because I need my bed and my bathroom and my blankets. The sound of her on the phone with the nurse on call at the pediatrician’s office. Mom not wanting to admit that it’s better for me to stay home. (I win, at least for tonight.)
The condensation on the 32 oz plastic reusable Baja Fresh cup filled with ice and Gatorade on the foldable tv table in front of the day bed. Mom saying “drink” every few minutes, but what she’s really saying is, “drink this or we’re going to the hospital and you’re getting an IV.”
The smell of the antiseptic at the doctor’s office. Trying to decide if I should sit in the Well Child Waiting Room or the Main Waiting Room because I’m very sick, just not contagious.
The way my sandals stick to the floors when I walk down the hallways. The shame before I step on the scale. The pride when the number is lower than last time. The dread when I hop up on the exam table because I don’t know what’s in store for me.
Walking across the courtyard to the phlebotomist. Asking for the smallest needle they have. Thinking how odd it is that every doctors’ office is always in something called a suite, like it’s some kind of hotel I see on The Travel Channel. Is this new or just new to me?
Mom asking if I stole her portable radio again (yes) and if I could give it back to her (no). Listening to Top 40, non-stop. Memorizing every song. Probably being too young to listen to and know the lyrics to these songs. Singing anyway because it distracts me. Taking a liking to Jason Mraz above all else.
Sleeping on the floor of my bathroom. Watching the sky change color in the skylight.
The taste of crushed up medicine in yogurt because I still don’t know how to take pills. Trying all of the chewables on the market, most of them chalky, some of them weirdly creamy, all of them gross.
Dad’s announcement that he’s in possession of Baby’s First Prescription when he comes home with my first daily sublingual medication. Everyone in the family has some sort of daily medicine. This is my rite of passage.
Hearing Mike frantically run upstairs because I’m screaming so loud that he thinks, This is it! My little sister is dying. I’m not dying, I’m wishing I was, because I didn’t know bodies can hurt this much without breaking to the point of ending.
Mom holding me like a baby, rocking me to sleep in the blue recliner, even though I’m only a foot shorter than her.
The pain hangover leaving my limbs shaky, head dizzy, knees weak.
Wishing I can tell people, but if I say “stomach problems” they’ll think it’s gross to hear about or not a big deal and I’m complaining about nothing.
Wanting to tell people, but they’re never going to understand the severity of my pain, the depth of my trauma, the hours and days I’m losing, the number of invasive doctors I’m consulting, the tubes of blood being taken from me, the disgusting medications I’m trying, the food I’m giving up.
So desperately longing to eat a slice of pizza at school, at sleepovers, at home, at church parties, at everywhere, but knowing the consequences that await me if I do, so deciding to eat nothing instead.
Eating something and then immediately getting sick, so my body eats nothing.
Over, and over.
New clothes because the old ones are too big now. More new clothes because the old new ones are now too big.
The doctor saying to me, point blank, “No more losing weight.”
Consciously responding in my head, “No.”
The awe of watching my organs expand and contract on the ultrasound, and finally comprehending why doctors and nurses and Mom are always compelling me to breathe.
Remembering to breathe.
Mom picking up my best friends, taking us to see a movie, to have dinner. Having fun. My stomach behaving. Feeling hopeful that we can do this, that it won’t all be awful forever.
Getting ready for the new school year. Planning my new outfit. Organizing my school supplies. Making plans. I am going to be great.
Coming home my first day of Fifth Grade asking why dad is home early and it’s because he lost his job.
Trying to remember to breathe.
Literally nothing left in the world making any sense at all anymore, but at least I get to quit piano lessons.
Mom and Dad showing us brave faces and telling us we are going to make every decision together as a family, everyone gets a vote, including the dogs.
Learning to swallow my first pill, 25 mg of Paxil.