His name is Victor and he’s ageless. Well, neither of my parents seem to know exactly how old he is, only that he’s retired from military service and work as a physiologist. Victor is their neighbor in the mountains and the day my mom introduced us he was working on building a car engine, wearing what appeared to be a cut off shirt sleeve on his head to hold back his shoulder length, mousey hair, and some sort of mock prison jumpsuit with a penitentiary name on the back that I can’t remember now, but he laughed with a boyish snicker as he turned to show it to us. I could see why people were unsure of his exact age.
He’s what I imagine my brother might be like when he gets older. They can both talk about anything and seem to know a lot about many different things, but you’re not quite sure how much to believe. Obviously very intelligent with the tendency for hyper-focus. At the beginning of the new year, my mom mentioned that she liked the look of the yellow FJ Cruiser–it reminded her of Costa Rica for whatever reason. Being a lover of all things car, Victor pounced on the opportunity to do the research and find her one. By February, there was a yellow FJ Cruiser in my parents’ driveway. He’s that guy.
After cursory introductions, Victor wasted no time in asking about my health. My mom had apparently mentioned my condition and being that he’s a retired physiologist that still spends time working with doctors and students doing cardiac research at a nearby med school, he wanted all the details of my syndrome.
I’m on vacation, Victor.
I’m okay. I’m good with not knowing too much. I’ve purposely avoided Google for the past three years because I don’t want to become so focused on this that I lose sight of the beauty in small moments of daily life. This syndrome doesn’t define me and I refuse to allow it to even try.
My mom, on the other hand, has done all the research and still can’t understand it. Hell, I’ve even confused my specialist on numerous occasions. So when Victor asked exactly what I had, the flood gates opened.
She has Nephrotic Syndrome.
Oh, god. That’s not good at all.
In my research, I found that it mostly happens to kids. Boys.
Leave it to me to end up with something that typically affects the exact opposite of myself.
Yes. What do they have her on?
Did she puff up to look like a Chinese girl?
The first time she got moon face pretty badly. This is the third time she’s had to do a course of it in three years.
That’s not good. Prednisone is terrible on the system.
Hi. I’m right here. I’m standing right between you two witnessing this volley of words like a mute ref at a tennis match. I don’t need a reminder that Prednisone is hard on the body. I live with the effects every day. Hello? Is this thing on?
What was the trigger?
We don’t know. They tested her for all hereditary triggers and she doesn’t have any of those.
So it’s metabolic.
Don’t know. They even did a kidney biopsy and couldn’t find an exact cause.
Well, if it’s not one, it’s the other, so it’s likely metabolic.
Am I here? Do we only exist because others believe us to be real? Does that mean in this moment they don’t believe in me? Am I already gone?
So you’re acidic.
What? I’m over here not existing, so I’m a bit caught off guard with the sudden question directed at me.
Your doctor is treating the symptoms, not the problem.
Do your hips hurt?
Just your hands and elbows?
How did you know that?
That’s good. That’s a good thing.
I’m confused as to how any chronic pain is a good thing.
Any sight problems?
Not that I can tell.
Good. How about your hair and nails?
My hair thinned out pretty badly after the first round of steroids, but came back and has stayed thicker than it was before. And my hair dresser says it is quite healthy, so I think I’m all good there.
No laughter. Everyone is suddenly so serious. I hold my hand up to look at my nails myself and he grabs my hand while asking if he can look. Don’t touch me. Why do you think you can touch me? We just met six and half minutes ago. Yes, I’m counting, but my memory is bad and I’m no good with numbers. I don’t like to be touched.
How about her thyroid? Did they check that?
I’m not sure, but I think they did.
I’m invisible again. All I can do is stand here and listen to every single word bounce back and forth and let the heft of them sink in too deep.
We need labs for her T1, T2, T3, T4, and D levels. They tested for Lupus?
Yes, I was so worried it would be Lupus. No diabetes, hepatitis, or HIV either.
Imagine having to tell your mom you had HIV!
What the hell is that supposed to mean and why are they chuckling? I find none of this humorous. In fact, I’m starting to regress to the days before all this when I would faint at any mention of something possibly being wrong with my health. I was well-known at doctor’s offices for having to lay down before they started going over results. Back then, nothing was ever wrong.
I’m seeing small dots of light filtering across my vision. The edges of this scene are getting dark and closing in. I refuse. I will not faint because of this. I’m stronger than this. I don’t feel faint. I don’t feel the staring as I yawn to regulate my breathing and mess with my shirt sleeve to distract my brain. I don’t feel my mom touch my shoulder lightly, letting me know she’s there.
I don’t feel a goddamn thing.
It was time we all walk away. He tells us to get him my records and he’ll pass them on to the doctors he works with. “We’ll put some research students on it. They love complicated cases.” Am I complicated? I always thought I was just Jenn.
Back at the house, I head straight to my room and flatten myself on the floor, looking up at the popcorn ceiling through salt water filled wells. Ruby Joon is all butt wiggles, tail wags, and love nuzzles. She knows when momma has the feels.
My parents are in the living room. From under the door, I hear my dad turn down the television. I hear my mom start to whisper something to him. I hear random words. “Victor said…” “metabolic” “more tests” “research students”. They’re whispering about me.
What hides in parents’ whispers? Fear.
But I’m here. I’m right the fuck here. This thing you whisper about isn’t me. It will never be me. I’m right here in the next room. Come and talk to me. I’m strong enough.
I’m your 38 year old daughter, not a child.
I’m your daughter, no longer a child.
I’m your daughter child.
I’m your child.
Believe in me, dammit. I want to keep existing.