Someone just like me

It’s such an overwhelming feeling to meet someone just like myself…but even more like me. More talented than I am, suffering more than I am, smarter than I am, and perhaps even with a disorder more rare than mine…

(Though that last one is definitely up for debate.)

This is how it happened:

I was at Cedars getting my blood drawn, a very regular thing for me for over ten years,

and the lab I normally go to, 530 East Tower, had the door locked, which was strange–

So I walked over to the Plaza level lab, where my favorite receptionist was working, and I told him about the locked door. He called the 530 lab, and sure enough the door was accidentally locked my someone, but they were open. As he was registering me, I said “you can go ahead and finish registering me, but when you’re done I’ll probably go back to the other lab to have my blood drawn.”

He looks at the computer, nodding, used to my quirky requests, “sure”.

“Is Sonia working today?”

I figured I should ask, to save myself the walk if she wasn’t working.

“No, actually, she’s on vacation.”

Shit. That’s a bummer cuz I really needed my blood drawn, because it was a timed test, otherwise I would have just gone back on Monday.

“Whose working in the lab in her place?”

“Maria.”

Double fuck. For reasons beyond the scope of this story, she is my least favorite lab person at Cedars.

“You mean, Fernando isn’t working?”

I like Fernando. If none of my usual favorites are working, he’s my next go-to guy.

“Nope.”

I glanced into the back of the plaza lab, to see who was working there. I saw a woman I didn’t recognized, and I figured I would just have to take my chance.

“Thanks, I’ll just stay here.

With a super warm and friendly smile, he said “great! Take a seat, there’s only one person in front of you.”

I turned towards the seating area, now realizing it was pretty empty. I glanced over at the one guy in the corner, presumably the patient in front of me.

Young…early 20s I thought. That’s very unusual, because I don’t meet many people in the lab in the 20-40 range, unless it’s a woman whose pregnant.

I sit down, not particularly feeling like getting into a conversation with anyone, a little nervous about this unknown lab person about to draw my blood.

(Usually an unknown lab people about to draw my blood ends being a disaster, so I wasn’t feeling particularly optimistic about my situation.)

The patient in front me starts talking with a third person, who was waiting for someone to come out of the lab, and somehow they said something that inspired me to chime into the conversation.

Then I really started to look at the patient in front of me. Smart, like really smart. Charismatic, ‘star’ quality for sure. I figured he must be some super successful person in the film industry or a tech genius, getting bloodwork for an annual physical I assumed.

“You’re in the film industry? That’s really cool.”

Shit, I thought. He’s probably some famous director (and I rarely pay attention to the film industry anymore), so I don’t want to look fucking stupid.

After some awkward fishing around for information out of curiosity, I finally asked point blank,

“Have you directed a feature?”

“Not yet, but I want to. Something sci-fi.”

That was interesting. He struck me as being very emotionally intuitive, I wasn’t expecting him to say sci-fi.

“Very cool. Have you done any shorts?”

“Yes, I have in fact. I went to Berkley, and I had a short in the campus film festival which won an award.”

Bing. First sign my instincts were correct.

He continues, “there was actually a screening at Warner Bros., but I didn’t go…they were interested in me as a drama director, and I’m interested in sci-fi.”

What???

“You had a screening at Warner Bros. of your short and you DIDNT go?”

Now I’m thinking this guy is either not as smart as I thought, or so fucking arrogant he’s never going to make it.

I impassioned, “look, if you have a screening of anything at a major studio, YOU GO. Who cares if they’re interested in you in a genre that you’re not as interested in, you can get your first break, do a good job, then always switch genres later. I’m telling you, this…”

He cuts me off. He can’t play along anymore.

“I was SICK, okay?”

I was stunned. He’s sick?

“I have a rare disorder than no one can figure out, and I was really sick at the time of the screening.”

Wow. Hold on a second. That’s my life, missing opportunities due to illness, that’s my life, having a weird thing no one can figure out, a weird thing that’s holding me back from pursing my dreams.

Is this guy for real? N.I.H., check that, spoke to them. John Hopkins, check, exotic labs on the east coast, check check. Tests, doctors, confusion, anger, frustration, check check check check.

It was like I was looking into a mirror.

Now I know I how look and sound to the world.

It turns out he was only at Cedars (one of the more expensive labs in town), because they’re the only lab that does a particular blood test that he was having done.

A blood test to investigate. A blood test he found himself and told his doctor to order for him.

I know what’s that all about.

It was his turn. As he went behind the door, I sat there, stunned. Third guy in the waiting room was a biochemist researching, doing genetic studies, and normally i would have been all over that guy in the waiting room, but my brain was just too stunned.

After ten years of being at Cedars, and meeting hundreds (thousands?) of patients,

I finally met someone just like me, and I didn’t know how to process it…I didn’t know how I felt. Definitely compassion, but I was also sad too. This person was obviously and clearly super brilliant, an amazing career waiting for him when he’s back on the other side, and on one hand I was glad to meet someone like myself, but on the other hand I was completely–and utterly–horrified, because I know how awful and painful a life like ours is…

[Shit, my puppy is really barking and I have to go and walk her. I’ll finish the second part when I get back.]

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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