Mom hovers close, her energy filling the space like the moment before a storm, where the air gets thick, trying to cradle you, protect you from what’s to come. At any moment she could split open and just drench me in love and support. She turns to me, her mouth open, but then seems to think better of it and huddles back in her seat. I sink into my puffy coat and pull out my phone, forming a barrier between us.
Jack
How’s it going?
What about this for Brooke’s party?
There’s a photo of a llama planter and I click to enlarge it, ignoring the last text.
I miss you.
I swallow the panic that spikes with each text, that he’ll come back and want more. My response is short and positive. Just a quick All’s good! But then I delete the exclamation point because I don’t want it to look too forced. I round it off by telling him the planter works. Brooke loves llamas.
I’m protecting Jack from the disappointment of not knowing what’s wrong with me, and myself from having to be the one to let him down. Me, I can handle the unknown the doctors give me. But I don’t know how to handle what Jack could make of the truth. That I’m not fixable. I am still just Ellie, not Ellie who needs to be handled with kid gloves. If Mom’s blog has taught me anything, it’s that there’s only so much people outside this world can take before they can’t handle it anymore.
SOS, I text Caitlin Barrie, my best hospital friend and fellow VACTERLs teen, because while Jack is spared Coffman’s gory details, Caitlin gets it in full.
Dots appear almost instantly. God bless Caitlin and her phone that’s permanently attached to her hand. She’s one of the few people in my circle of friends who understands the ten thousand kinds of weird my life is. Except Caitlin would go into a spiel about what actually causes VACTERLs and I would just glare at the person who asked. I don’t have to explain doctorspeak to her or worry that she’s going to pity me or freak out—with Caitlin I can breathe.
Caitlin
Boyfriend or Mom?
Ellie
Both.
Caitlin
ETA?
Ellie
5 Mins.
Caitlin
Copy that.
Caitlin is an anomaly of the best kind. Our moms found each other in the blogosphere when we were babies and got thrown together mostly by parental association. We were casual friends, until one of our trips to Coffman overlapped and we became hospital best friends.
Since I’ve been confined to a couch for the better part of the last two months with only my cat, Tok’ra, for company, Caitlin’s constant texts have kept me sane. She understands so much, especially why I keep my friends from the realities of hospital life. Every time I try to talk to Mom about how my friends react when I bring up something like my hand straightening or that time they moved a tendon from my ankle to my hand, Mom gets real quiet and she’ll say something like I’m so sorry.… She takes the blame for my life as if she were single-handedly responsible for my disability, even though not even doctors can tell you what causes VACTERLs. Caitlin never makes me feel bad for what I say.
When I’m not in the hospital we can go months without speaking, and then boom!—one text and we’re right back in the thick of it. It doesn’t matter that her VACTERLs and my VACTERLs are barely alike. We both hold different letters. At this point, I couldn’t tell you what the other letters are, but my letters are Vertebrae, Limbs, Renal or Radial (depending on your doc), and Cardiac. Things that for me were largely structural and required a string of surgeries before graduating into maintenance mode. Caitlin’s letters are a bit more intense, and her maintenance program is more invasive than mine. No matter our letters, we’re both joined forever by an understanding of how an acronym can turn your life upside down.
To avoid Mom, I scroll through social media, catching flashes of Brooke at debate practice and Jack at choir rehearsal. Pangs of loneliness shoot straight through me at being left behind. Brooke and I have done speech since freshman year, when we were thrown together as debate partners. Turns out I hated policy debate and switched to oral interpretation, but our friendship stuck. You can always find us in the speech room, Brooke surrounded by stacks of information and me going through another piece. I would give anything to be back there. Physical pain I can deal—I do deal—with, but no hospital pain scale can measure being left behind.
A picture of Brooke holding a debate plaque stops me midscroll. The last time we got to hang out was after school in the speech and debate room before my cold went from annoying to debilitating. I laid on top of one of the tables like a lizard under a heat lamp. Brooke was nearby. “Are you actually going to run your piece?” Brooke asked.
“I’m absorbing it,” I said, adjusting the script on my face. “Osmosis.” My whole body felt like a sack of potatoes. My throat was raw from the previous tournament, but I was pretending that this cold was on the way out. Come on, body, hold together.
“Diffusion,” she corrected.
“Huh?” I pushed myself up on one arm, script falling off my face.
She flipped her brown ponytail over one shoulder and leaned her chin on her hand. “Osmosis is the passage of water through a membrane. Diffusion is for everything else.”
“I know you took AP bio last year,” I said, flopping back down on the table.
“And got a five on the test,” we finished together, devolving into giggles. Brooke is the brains of our friendship. She could be a doctor or an engineer or anything she set her mind to, but she’s still undecided.
“You have a good shot at nationals and can dominate state—if you don’t wait to step it up.”
Post–mysterious illness, it’s maybe nationals but not state. I cough again and Mom tenses in the seat next to me. I try to swallow them, the burning sensation in my lungs growing until I’m forced to let them out.
Unlike the colds everyone else deals with, mine just refuse to go away. My lungs would hack until blood and tissue came out if I let them. I spent nights coughing, sleeping only when Mom gave me Benadryl. Not exactly Ambien, but it gets the job done.
I would seesaw between my couch and school. Miss a week, go back, mostly better, and then be out for two days. The process repeated until Mom finally forbade me going back until I’d been well for a whole week.
Even with Mom’s new rule, I still didn’t improve. Local docs would suggest this and try that but didn’t have the patient breadth to understand my complex case. So here we are, pulling in the big, fancy docs at Coffman, trying to figure out what’s up with my body, because they got it in one last time. I want Dr. Darlington to have the answers, even though deep down, I know he doesn’t.
The bus drops us off at the Family Care Home and I sprint for the entrance. They really try to make this house nice: fake winter flowers in the pots by the door, meals, art. There are plenty of long-term places to stay around Coffman—the transplant house, Gift of Life House for adult cancer patients, and Family Care, which is all about families with sick kids. There’s just something forced about it, as if this is their way of handling our lives. I fish out the key fob from my pocket and wince as I bend my elbow, the IV site threatening to royally bruise.
I swipe us through the inside door, letting myself into the large lobby that tries to be a bit of everything. A check-in desk, a living room, a catchall for things families can check out.
A stylized quote in the shape of a house hangs above the fireplace: Through this together. That’s the only piece that seems made for the space. You take what you can get—what a motto for hospital life in general.
The desk volunteer looks up from her textbook and breaks into a smile. Bright and fake like plastic plants outside meant to withstand the harsh conditions. I ignore her.
Caitlin stands in front of the fireplace, her phone out, trying to get the best angle of her and the sign. This is complicated by her height. Whether it’s a product of VACTERLs or just normal genetics, she barely comes up to my chin. Her platinum-blond curls frame her pale face, giving her an extra few inches of height. If her mother didn’t forbid it, Caitlin would wear three-inch heels every day even if she has a tendency to fall in them.
“Ellie,” Caitlin says, waving me over. She has a full lower arm and is missing only her thumb—which you couldn’t tell unless you looked closely. Lucky her. The L—limb defects–is the only letter we share.
Mom hangs back, sliding the X next to our name from OUT to IN on the house board. There are twenty-four names on the board, twenty-four families staying here while their kids go through the medical wringer.
“Come be my photographer,” Caitlin says, and the tightness in my chest lessens as the normality of my hospital friendship with Caitlin settles in.
Caitlin shoves her phone into my hands, several photos that are basically the same already captured. Being a photographer is as close as I come to being a part of @APatientLife, Caitlin’s handle across social media where she chronicles her life as a constant patient. Despite her many attempts at trying to get me involved, I … refuse. Facing that spotlight again—to have people poke and prod at me? No thanks.
I capture Caitlin’s poses and then hand the phone back to her. “You don’t mind if I steal her, do you, Mrs. Haycock?” She loops an arm through mine and bats her eyelashes at Mom. “I only get her for a few days.”
“You can have time for yourself,” I add, because that seems to be the collective number one complaint on the blog: no time for yourself because your kid requires it all.
Mom eyes me, and I think I’ve overstepped, but a smile creeps in. She holds out her hand for my coat. “Enjoy.” She kisses my forehead and I squirm away. Am I five? She takes my coat and heads for the elevator.
Once she’s out of sight, Caitlin and I sag, shrugging off the parental-approved upbeat veneer. That’s when Caitlin strikes, turning the camera on me. “What is your one piece of advice about life at Coffman?”
I hold a hand up in front of my face like I’m avoiding paparazzi. “Caitlin…”
Hits on VATERs Like Water always come with photos of me postsurgery or in hospital situations. Mom’s camera sometimes seems glued to her hand. It’s kind of put me off the whole photograph thing.
And then there’s the comments on those posts—they skew more gross than normal.
Poor Ellie! You’re doing the right thing!
She’ll definitely thank you for this one day!
We’re praying for you and your sweet precious angel.
These posts were always me at my most vulnerable, barely post-op, and she went on to talk about how terrible it was to watch me be in pain but knew it was for the best. Her strength her love, me just an object.
“Humor me. I just saved you from your mother. Plus you want to be an actress—consider this your debut.”
Shock filters down my spine like pain meds through an IV. My dream disperses quickly and leaves behind the brutal reality. As much as I want it—to be onstage under the glittering lights—I know that’s not in the cards for a girl like me. Or if it is, it’s gonna be an endless round of rejections just for the way I look. Which is normal, but I’m not sure it’s a battle I want to fight.
I lower my hand, the camera lens as sharp as a scalpel.
Caitlin peeks out from behind the camera, concern creasing lines into her forehead, as if she can see the fear in me. “Pretend you’re at one of your speech competitions, then.” Her smile is cautious, barely holding back her excitement. I adjust the clip in my brown hair; reaching for that part of me feels like slipping into familiar shoes. Speech competitions are to me what @APatientLife is to Caitlin. My outlet, my thing, the closest I can get to my dream. A place where it’s talent over looks. “Just try it.”
I take a deep breath: What can it hurt? I’ll comply even as the emotional fallout threatens. What Caitlin has—that captive audience that listens to what she says—I want that.
Big smile, shoulders back—just like at a competition.
I allow that part of me free, my body shifting ever so slightly, adrenaline picking up steam in my blood. This is what I live for—to be in front of an audience. I can almost see Brooke sitting in the front row giving me a double thumbs-up. The vision is both a comfort and a stab of sadness. I miss Brooke.
A small smile that spreads for the camera: I can do this. A deep breath and my lungs crackle.
And as coughs leak out of my lungs, I eke out, “Beware of social media and the nurses who follow your parents.” The words come out before I can stop them, probably a solid sign that today was too much.
That makes Caitlin drop her phone. “I’m sorry, what?” Her outrage soothes me. Brooke would have a million questions: What do you mean your nurse follows your mom? What does your mom do? It would mean letting her into a place I’d rather keep hidden.
“My nurse today read Mom’s blog. She was a big fan of all the work my mom does with families.”
“When did this place go so downhill? You’d think with the money we’re paying they’d do a better job hiring the staff.” Caitlin flips her blond hair and pauses for breath, and a new voice sneaks in before her rant can truly start.
“Are you two interested in the house dinner?” Caitlin and I both turn in what I feel like must be slow motion. The perky volunteer behind the desk, her bright smile exposing as many teeth as possible, gives a little wave, just to show us it was her. Her blond hair falls in soft waves around her heart-shaped face. Her skin is trying desperately to hold on to her summer tan. “It’s being hosted by a sorority. They’re bringing spaghetti.” Her voice is heavy with syrupy concern, the sort that masks itself as medicine. This dinner would be so good for us.
“Sounds like just the thing for A Patient Life,” Caitlin says, stepping in and saving the poor volunteer. Perky beams at us like she’s just done her good deed for the day. Internally I roll my eyes. She’s one of those volunteers. Much like the commenters on Mom’s blog, this type of volunteer has a voyeuristic need to see our lives, if only to save us from ourselves. Usually, the Home is better at fishing them out, but no system is perfect.
Caitlin and I exchange looks.
“We have to eat,” Caitlin says. “Or we could always go find your mom.”
“Fine.”
Perky beams, and at least when surgeons give you bad news you have the satisfaction of knowing you’ve mooned them at least once.