House dinners are meant to instill an air of familiarity and family. The food is not exactly Michelin starred, but after a long day of being poked and prodded, I’m glad for an easy meal surrounded by lots of people. They provide a barrier between me and Mom. Can’t have a meltdown in a public place.
Caitlin and I load our plates with noodles and red sauce and steaming slices of garlic bread. Her phone dings about ten times before we get out of line.
“So many loyal fans,” I say, trying to figure out where exactly we’re gonna sit. It comes out harsher than I mean it and I look away from Caitlin. Her whole page is about education. Whether she likes it or not she gets to teach people about disability—and not just what you might find in a medical school textbook. This is her life, but she’s not the specimen under a microscope, she’s both scientist and specimen. Unlike me, Ellie in #TeamEllie, who is just constantly served up for others to study.
Caitlin eyes me over the top of her phone. There’s a question in her eyes, like she’s trying to see if it’s worth telling me the truth. Panic eats away at me, and for the first time I worry that Caitlin is pushing me away.
“You’re sure you want to know?”
“Yeah. I want to know about something that takes up your whole life.”
She looks down at her phone again and then back up at me, trying to decide how truthful I’m being. “It’s a post on maintenance checkups. Dr. V agreed to be involved.” I don’t miss the smile that pulls on her lips, unable to hide the pride she has in her work.
“Ah,” I say, knowing that type of post all too well. Mom’s directed me through several at different ages. Posts that chronicle our days at Coffman, which doctors we saw and how long the wait times were—usually accompanied by photos of me having a complete toddler meltdown—or how many times she had to drug me because Coffman was running behind on certain tests. Those posts too went viral and it was one of the many times she got invited to some local morning shows. It gave her a chance to launch her fundraisers to bring families like ours together. To share knowledge and resources on how best to live like we do. As much as I want to be supportive and promise myself that I will be, my face can’t hide the grimace.
I was so sure I could take it. No matter what I do, I can’t escape how my mom has put me on display.
Caitlin’s mom smiles at us from a group of other moms. Like mother, like daughter; both of them can go anywhere and instantly find friends. Sometimes I’m jealous of how easily Caitlin just slips into the world. There’s no crooked spine or missing bones in her arm to snag the eye. Caitlin can blend in. And even though I know it’s ridiculous, sometimes I wish I could too. I love who I am, but that doesn’t change what people see when they look at me.
Caitlin steers us away from her mother. I raise an eyebrow. No parentals. Check. Instead, she chooses a table with a single occupant. A boy with brown skin and a beanie pulled over his ears sits on the other side, reading a book. His thick eyebrows sit over dark eyes. But neither the book nor the beanie can hide his bald head underneath. Cancer.
I take a step back, not because I’m scared of him but because of germs. Cancer is a pretty common reason to come to Coffman, but usually you see everyone but the kid—parents, friends—the kid is locked away in their room recovering from or prepping for a round of chemo. Cancer treatments wreak havoc on the immune system, not exactly a patient you want mixing with the Home’s gen pop.
Caitlin sits without even noticing Cancer Boy, too busy with her fans. I sit, trying to angle us away from him. “How’s Elijah dealing with everything?” I ask, teasing her but also wanting to draw her out of this online world and the dangers it poses.
“Good. He wants to know how everything is going. So I tell him everything.”
“And he doesn’t mind that?” When Caitlin says she’ll share it all, she means every thought that runs through her head while she’s seeing a doctor. Fears, hopes, and statistics. @APatientLife is Caitlin with a filter.
“Does Jack mind hearing about it?”
“I don’t tell him anything.” That gets Caitlin out of her phone and she looks at me like she can’t believe the words coming out of my mouth. “You and I both know this place isn’t exactly conducive to long-term relationships.”
I’ve thought about telling him and even went so far as to script it out and practice. But I chickened out when he draped an arm over my shoulders, unable to believe that telling him would make him see my disability as just me and not a part of me.
Plus I’ve seen what “sharing” does to Caitlin’s relationships. They say they’re all in and then she shares this part of her life and they dump her. She has not figured out that maybe her oversharing is what’s killing her relationships, but I have enough evidence to prove my theory. Reveal too much about the hospital to your significant other and the doomsday clock strikes midnight.
“Um, and what are we?”
“This is different and you know it.” A cough rumbles in my chest, and I clench my mouth, refusing to let it out. My breath rattles the pleurae in my lungs. Closing my eyes, I will the cough away, but the force only grows and I lose, doubling over, catching the cough in my elbow.
Families tense around me and shoot me daggers of Should you even be here? That’s always the tension in the Home, between community and survival. I come back up, drawing a deep breath. My hair falls out of its clip; it’s been months since I had a cut and my brown hair falls in useless sheets around my face. I stand up to go find a wall to help me put it up again.
Cancer Boy’s brown eyes follow me while Caitlin’s on her phone, and those thick eyebrows rise when I go to do my hair. I know it’s weird, but Mom decided that me being able to touch my face with both hands was overrated. And honestly, my right hand is better now. So while the surgery might have ruined my social life, score one for the long-term function.
“They need to”—Caitlin motions toward my chest when I come to sit back down—“figure your shit out. What do you think insurance is paying them for?” They. There is only one they at Coffman. Doctors. At any given moment they are either your savior or your warden. “They’ll be able to get a better picture, at least—see something your other doctors didn’t?”
I want to laugh, but a cough stops me. Yeah, my at-home doctors who looked at clear X-rays and the number of cough medicines I went through and were stumped—their only solution was that this was my doing. No amount of me complaining or Mom backing me up would change their minds.
“Not sure the ones here are any better.” I don’t mean to let that out, and Caitlin bristles at my words. Despite knowing me since I was six weeks old, they always side with Mom. I grew up with those doctors, my life and their careers intertwining; they all asked Mom or listened to her when she wanted something done to me, but no one—not even those I knew so well—asked me what I wanted. At least Darlington is open about his disdain for me. He has zero interest in what I have to say or what I’m experiencing, probably because he thinks I’m about as smart as his prescription pad.
But now he’s my only hope. Too bad he’s also a …
Torture device.
Liar.
Pompous SOB.
Those titles don’t require one hundred thousand dollars in debt and twelve years of your life to obtain. For what he’s putting me through, he better be worth it.
Please be worth it. I’m not willing to place all my faith in his plan, but I can’t abandon all hope. I cling to what I don’t think will happen, just to quiet the panic inside my head.
“They know what they’re doing,” Caitlin says.
I arch an eyebrow at her. Really? We’ve been through enough to know doctors get it right eighty percent of the time. You have to be your own best advocate when you step into their lair—I mean, office.
“Sometimes the doctors here forget they aren’t the gods of all medicine.”
She relents. “If you need someone to chew them out and set them straight, you know where to find me.”
Caitlin’s smile presses flat and I know there’s only hard truths ahead. I want to lay my head on the table, block my ears, and pretend to be normal. Go back to the way I am most of the time when I can forget about Coffman and just be me. But being here makes you face reality pretty quick. There’s no time to hide when decisions have to be made.
“They don’t teach apologies in med school,” Caitlin says.
We know the score. You want to have faith in those that care for you, but sometimes it’s so hard when they tell you things like You’ll thank us for this one day. It’s not that painful. Just one more. All done in the name of what is good for you. I just wish what is good for me wouldn’t break me.
A noise somewhere between a snort and a cough comes from Cancer Boy, who carefully turns a page in his book, but he’s smiling. Huh, you are listening to us, I think. A closer look reveals his long eyelashes and thick black eyebrows. So not cancer? But his brown skin carries that deathly sick pallor.
“The doctors here are the best in the world,” a voice pipes up from behind us.
Caitlin and I both swivel around to see this intruder. He’d almost have his back to us if it weren’t for the circular table. From the authority in his voice and the fact that his thick black hair skims his collar—I’d say sibling. No time for a haircut when your brother or sister is hospital bound. Even in profile he wears the ease of someone comfortable with his body, but he sits stiff in his chair like he’s been strapped to an IV pole.
Sibling, definitely a sibling.
I should let the boy have it. Unleash a stream of Don’t even get me started about the medical-industrial complex. But I pull my words in, hold them tight against my tongue. No one going through this hell in any capacity deserves a full takedown.
But a minor one wouldn’t hurt. His sibling can thank me later.
“You can be the best in the world and still not be right about everything. World-record holders don’t set new records every time.”
“But they have more wins than average.” He turns around, fixing me with his wide-set dark brown eyes and a look that says he’s ready for a fight.
“Well, if you have a non-world-record-needing case, sure, I suppose that works.” This metaphor has gotten away from me. Sports of any kind were never my strong suit, but I think I made my point anyway.
“Maybe if you trusted your doctors—had some faith, you wouldn’t be here,” he counters.
“So I can just be another case for them to write a paper on? Look at this anomaly I found among humans.”
“But they did fix you.”
My face drops, and anger runs hot through my veins. Clearly, I shouldn’t have held back at first. What would a sibling know about this experience? Sure, it sucks to be the one dragged along, but their life is only mildly fucked up. Me and kids like me, we get majorly fucked up by this system.
“If the doctors had done their job right the first time around, I wouldn’t be their candidate to try on every test to figure out what’s wrong with me.”
Anger pounds on every word I want to say, loading them up like a cannon, but before I can let them fly, Cancer Boy cuts in, his large frame pushing me and Team Doctor Boy farther apart.
“Hi,” he says. Cheerfulness clings to the edges of his words, which are a sheathed knife that says We’re done here. “So, doctors are neither good nor bad, they just are. And we’re scaring the newbies.” He nods toward the other tables where young families eye us with alarm.
“And why should we listen to you?” Team Doctor Boy asks.
Cancer Boy takes a deep breath. “Because I have cancer and my list of doctors is longer than yours.”
And there is no comeback to that. Except maybe I’m sorry. But even then, hiding under the I’m sorry is Thank God that’s not me. Cancer is no joke, and you don’t need just yesterday’s miracles; you need all the miracles past, present, and future.
Cancer Boy cracks a smile.
I look to Caitlin to share a What the hell is going on? look. But she is just as shocked as I am. We haven’t battled for our lives in years. Sure, I hate being sick, but Cancer—with a capital C—is not even close to what I face.
And he’s smiling.
The boy opposite me fishes for words, his mouth opening and closing before he finally catches some. “I—I—then…” Unfortunately, he didn’t get enough to make a sentence.
“It’s minor cancer.”
“What,” I manage to spit out, my mind still racing to get past cancer.
“I just wanted you both to stop arguing.”
“So, you don’t have cancer?” the boy asks. His words come out slow, as if he’s worried that Cancer Boy might be a few cc’s shy of a full dose.
“No, I do. But it’s, like, small cancer. Little c. Totally curable. My parents are just overly cautious.”
I look at Team Doctor Boy and he’s just as unsure as I am. What do we say to that? It’s still cancer—capitalized or not. I quickly look away because I don’t want to focus on the boy’s rich brown eyes.
“Uh-huh,” Caitlin says, the first one of us to overcome the shock of his announcement and then the amendment to his announcement.
“You know, if you have cancer you might as well go to the best place in the US for treatment.”
Team Doctor Boy across from us looks like he might want to say more but mercifully remains silent. Cancer trumps just about everything in the hospital.
“Exactly. Glad we had this talk. Enjoy your stay.” Cancer Boy gets up and returns to his place at the table, picking up his book once more. Point made.
VATERs Like Water
This is that surgical life
Age: 11 yrs, 4 mos. Entry #836
Comments: 2.3K Bookmarks: 5K Shares: 10K
Alt text: Ellie’s crying, her right arm—four fingers, shorter than normal—is propped up, bandages being removed postsurgery, exposing the six titanium pins going through her arm attached to a frame. She’s pulling away as the doctor attempts to change the dressing.
I wanted to share this photo because I want to be real with you all. To not just show you the happy moments, but also the ones of deep struggle. Watching my child hurt is something no parent wants, but what is a parent to do when the thing that will give your child freedom comes at such a cost?
If you’ve followed along since the beginning, you know that we’re no stranger to surgery in this family. In fact, this one here is just the start of a long process that will cover at least three separate surgeries and take up the next four to five months of our lives.
Ellie’s having her hand straightened. I’m sure this sounds strange to some of you, because your arms were born that way. It will give her so much freedom—she’ll be able to go through life with two hands instead of one and another that’s basically useless.
My daughter was so scared for all of this, but I kept telling her all the things she’d be able to do once she was done.
Focus on the positives to get through the negatives!
Gwen