Survival Always Sends an Invoice

The same crinkled white paper crackles beneath me like newspaper every time I move my leg. The paper never changes, and I wonder if all doctors coordinate with the manufacturer. The texture is always dry, thinner than petals, ripping with small movements like drawing breath, and never protecting from anything other than direct flesh against an exam table.

I move my bare feet back and forth like a pendulum. My ankles collide, and I allow the bones to ricochet off one another, a reminder I am still alive.

A new doctor.

I came for prescription refills.

I didn't know I was about to leave with something far more difficult to accept.

The clock that could be older than me ticks with each second passing, and I make my blink to its rhythm. I await an implosion as the ticking clashes with my impatience.

They are always late.

I'd heard the stories. He was the only adult rheumatologist in the state who specialized in the disease that dismantled my childhood. My pediatric rheumatologist spoke about him with the kind of reverence usually reserved for miracles.

I didn't believe in miracles anymore.

Tick.

Tock.

I rip another tear into the white paper by bouncing my leg against the air. My feet don’t reach the ground; A decade of steroids had stolen any height I might have imagined.

I wonder what he is doing. I wonder what news he is delivering that takes this long.

“Do you think he is handsome?” my mother asks, jolting me from my thoughts.

She had refused to let me go alone; she’d been to every appointment, every surgery, infusion, and physical therapy for years, and while I attempted to dismiss her as I graduated into the grown-up world of rheumatology, she refused.

I would always be the sick little girl regardless of my age.

I rolled my eyes at her question, expecting the comment of how they’d get stuck in place, but she was silent.

No knock, no warning, the door opens, and in walks the man the world had written fairytales about.

He shuffles over to a doctor’s stool and sits.

He doesn’t acknowledge Mom; he doesn’t even look her way. He rolls up to the exam table, and now I am the same height as him; we are eye to eye.

He looks at me. No words.

I look at him. No words.

We study one another, deciding whether we want to understand one another or circle like predators.

He has wrinkles like my grandfather. Weathered, as though he'd survived storms no one else noticed. He looks at me. I look back. I've played this game since I was a child.

Who blinks first?

I always won.

Until my body stopped cooperating.

Finally, he speaks. “I took you under my patient roster because your pediatric rheumatologist is a great colleague of mine, but you are an adult now, and I will treat you as such. I don’t mind if your parents or a friend come to the appointment, but I’d ask that they stay in the waiting room,” and he never glances at Mom. I nodded my head. I think he expects me to be grateful that he’s accepted me as his patient, as if it is a privilege to have such a wounded body to capture his interest.

He rolls over to a desk opposite the exam table and grabs a folder filled with papers as thick as an encyclopedia. “This is just your medical chart,” he says with a smirk and small laugh. I allow the right side of my cheek to rise in acknowledgment, knowing that file doesn’t hold nearly the lifetime I have lived.

He begins flipping through its pages to find the medicines I swallow.

I know he will not find disbelief in those papers; those papers will not tell the story of how, at eight years old, I began to refuse to rise from bed for school, my favorite place, and that every adult in my life called me a liar. Those papers won’t cover the waking of our entire household to my screams like a train horn in pain, and then being told by emergency services that I was having growing pains. He won’t find that no one believed me until it was too late.

“What a disease,” he whispers as he rubs the pages between his fingers.

Those pages will tell him that I was diagnosed at 8, I couldn’t get out of a chair, I couldn’t walk, and it took a dozen doctors to rebrand me. The pages won’t say that I lost my name, as it was replaced with a disease that only about one in every five million children are diagnosed with each year. Pages can hold stories written in pain, but not those pages; those pages are just medical jargon about how one doctor passed me another, like a Pokémon card, trying to find its rightful owner.

"You've been on steroids your whole life."

I nodded.

Survival always sends an invoice.

Those pages couldn't tell him how hard I had worked to become anyone but the disease.

Doctors were the only people who could see through the disguise because they held the one thing more intimate than a diary: my medical chart. He placed my chart back on the desk, and flecks of dust left the bottom pages.

I wondered if he’d keep me now that he knew.

He flips a switch, and an X-ray board illuminates the room, displaying my body for us to view. The folder of my body’s story wasn’t enough.

The doctor stands up and holds a pen he’s pulled from his pocket. “Look at all these calcifications, how painful,” and he shakes his head in disbelief.

My body glowed across the X-ray board, every calcification preserving a history I'd spent years trying to hide.

I wasn’t making it up.

I didn’t lie.

My body hates itself.

He clicks off the light, and the embarrassment of my bones is dark but not gone. He walks to me and takes my hands; he looks at the rash across my knuckles and presses his fingers into my skin. The rash disperses for seconds. I’ve tried that too; the rash always returns. I grew agitated by his lack of words and ability to study me.

I needed him to validate the life I had built on the lie that I had outrun my disease.

I was in college. I was working. I had fought both my body and my parents for the right to do both. I needed him to refill the medications that kept me alive and tell my mother I could keep the life I'd fought so hard to reclaim.

“You have lived quite a life, a childhood taken from you. You’re an adult now. This disease is so rare that most do not know how to manage it, let alone recover from it. Your body carries proof of what you have survived. I will take over your care, but there is nothing fancy or new I would include; the disease is in remission. You need to be living your life. You have learned to live with this disease for your whole life; don’t let it take the main stage. Tell me about yourself. Tell me who you are without the disease. I’ll refill your prescriptions, and then you can leave; no need to wait in the waiting room for me to do that.”

I glare at him.

Who am I?

I came prepared to talk about prescriptions and limitations, and to argue. I didn’t come prepared for that question.

When I was little, people asked what I wanted to be.

Astronaut.

Teacher.

Veterinarian.

Somewhere between diagnosis and adulthood, they stopped asking.

Eventually, I stopped wondering.

Who am I?

For the last fifteen years, I have worked at becoming anything but the disease.

I knew who I didn't want to be.

I didn't want to be a sick girl.

I didn't want to be reduced.

I didn't want to be underestimated before anyone knew my name.

So, I buried the disease beneath makeup, excuses, and stories.

I dug so far trying to bury the disease that I didn't notice I was in the hole too.

No doctor, no parent, no friend had ever acknowledged the cost. They mourned what the disease had taken, but they still let it occupy center stage. Somewhere along the way, I disappeared from the story.

When I walked into his office, I thought I needed prescriptions. I thought I would have to fight to keep my life the same.

What I needed was permission to stop hiding.

No one had ever told me I could choose not to be defined by illness.

I left the waiting room with prescriptions in one hand and my own name in the other.