Chapter 12 Skylar
Skylar
You don’t have to come inside. It’s going to take, like, four hours.” I put more lubricating gel in my dry eyes. Blink furiously. Adjust my glasses. “Unbelievable amounts of waiting between tests.”
“I spend half my life in waiting rooms these days,” Pike says. “I’m used to it.”
After a long moment, I nod. “One thing, though. Dr. Wharton has a fragile ego. So even though your presence might help, you’re not going to say anything bad, right?”
“If that’s what you need.”
We both sluggishly exit the car. While I check in, Pike unloads his wheelchair. I rearrange the furniture so he can sit next to me in the waiting room.
Mom sends me a text. Saw this article on juicing for headaches. Ask Dr. Wharton!
I drop a screenshot into the support group, knowing I’ll come back to comments commiserating about unsolicited advice.
Pike puts on a pair of reading glasses and pulls out a Moleskine notebook. “Anything in particular we want to discuss?”
“I’d like to get a specific type of imaging that will show whether I qualify for a stent.”
“That’s the tubing that drains spinal fluid from your brain into your”—he squints at his notebook—“peritoneal cavity, right?”
“No, that’s a shunt. Wait a minute!” I grab his notebook. “You have notes about IIH? Let me see that.”
In messy, old-school cursive, there’s a long list of IIH terms like lumbar puncture (spinal tap), shunt, and papilledema (swelling of the optic nerves).
“Can’t be too helpful if I don’t know what I’m talking about.”
My heart warms, even if it’s just a little research. It’s the thoughtfulness that counts. My eyes snag on a note scrawled diagonally in the bottom right corner. “What’s this?”
Pike rips the notebook out of my hands. “Nothing. Leftover notes from a writing session. Long time ago. Didn’t have a blank page.” He blacks out the words with strong streaks of his pen, but I catch the beginning anyway.
She is,
bright red paint splashed
against a faded mural
in desperate need of color
Pike’s neck is scarlet, so I don’t press him. I’m honored he looked up my condition.
“So, a stent is different from a shunt,” I say.
“Shunts are more commonly used nowadays when someone is losing their vision quickly or medication doesn’t work.
For many of us, it’s more of a last resort when other treatments fail.
Some people do well with them, but there’s a huge failure rate because of malfunctions, infections, and the need for frequent revisions.
I know some IIHers who have upwards of four surgeries a year. ”
A grimace overtakes Pike’s handsome features. He scribbles a note.
“It’s not a cure,” I explain.
“But if it could help, why wouldn’t you get one?”
“Because IIH isn’t one-size-fits-all,” I say. “Some cases are caused by venous sinus stenosis—narrowing in the veins that drain cerebrospinal fluid away from the brain. A shunt reroutes fluid, but it doesn’t fix the stenosis. A stent would open the veins up.”
Pike tilts his head. “So, you need imaging to see if that’s the problem?”
I nod. “If my veins are narrowed enough, a stent could treat the possible cause. It’s also a less invasive procedure than shunting.” I check my face in my phone’s camera. “How do I look? Honestly.”
Pike puts down his pen. “What do you mean?”
“I feel like a wreck, my meds are giving me acne, my hair is thinning, and I’ve slept a collective five hours since Friday. I can’t look sloppy or unmotivated, but I also can’t be so put together that I seem like I’m not sick. It’s a hard balance to strike. Doctors judge you.”
I’m wearing the most slimming thing I own, a long-sleeved tunic over leggings, along with heeled shoes, even though trekking in my boots this weekend gave me blisters. The tunic cinches at the waist, flattering my wide hips and hiding the folds in my stomach when I sit.
Pike tilts his head as he inspects me, his smoky eyes dragging down to my legs, then back up to my face. Unlike me, he’s relaxed in gray sweatpants and a black hoodie. He reaches for my unruly hair and smooths out a few strands with his fingertips.
“There we go,” he murmurs, gently tucking a curl behind my ear. “Perfect.”
His hand lingers for a beat longer than necessary, his thumb brushing against my cheek before he lets it fall away. His gaze flickers up to meet mine, quiet but intense. A shiver flits over my skin.
“Skylar?” a tech calls.
It begins. The long series of tests before I see the doctor.
First, it’s pictures of my optic nerves while I focus intently on an arrow.
The second test is my least favorite: the visual fields.
It involves staring into this infuriating machine while wearing an eye patch and clicking a button whenever I think I see a blinking light.
Every time it’s over, I think I’ve lost my mind.
Then it’s a regular eye checkup, IOP check, and a bunch of tools that test depth and color perception. Due to my low-grade papilledema, I’ll keep repeating this every two months until it’s under control.
By the time we go into Dr. Wharton’s room, Pike is squirming. “My hips are killing me.”
“I’m sorry. I said it can take hours.”
“Guess time flies when I’m dominating at Wheel of Fortune.”
I can’t hide my smile. Pike keeps winning, but I loved having another player to compete against in the app. For me, the waiting time flew by.
“This is why I tolerate my job,” I say. “Any other job, I’d have to take off the whole day because there’s no point in showing up to work for only two hours.”
This year will be more complicated, though.
There’s no time for these long appointments during fair season.
I’ll have to talk to Dr. Wharton about a note.
My boss’ll love that. Probably as much as Dr. Wharton, who will argue that standing on my feet will help me lose weight.
If only I could flip the bastard off. But that’s not happening when most specialists who treat my condition have nine-month wait lists and Dr. Wharton’s made damn sure I’ll have trouble getting into any of them.
A tech gets me on a scale. When she inputs the number on the computer, a red arrow on the screen flashes upward. Next to it, in bold, it says I have an increase of 1 percent and my BMI is 27.8: OVERWEIGHT.
Dr. Wharton comes in after another twenty minutes. He’s a thin white man in his fifties with an air of arrogance about him.
“Skylar. Nice to see you. And who’s this fellow?”
“This is my boyfriend, Brandon.” I give Pike a pointed look.
Dr. Wharton’s polite as he checks my eyes and reviews my tests. “Your papilledema hasn’t worsened. Are you keeping up with your medication?”
“Yes, but the pins and needles this time are almost unbearable. The ringing in my ears has also gotten worse.” I fiddle with my necklace to hide the way my palms are sweating. “Could I try methazolamide instead?”
Dr. Wharton returns to his screen. “It’s the same thing as acetazolamide.”
My shoulders drop.
“If it’s the same thing, what’s the harm in trying it?” Pike asks. “I read that it can cause fewer side effects.”
A single gray eyebrow lifts. I bet Dr. Wharton didn’t expect him to do any research either.
“I don’t prescribe that for pseudotumor cerebri.” Dr. Wharton turns back to me. “I see you’ve gained weight in the last month.”
I sit up straighter at his accusatory tone. “I just got my period.”
“You’re supposed to be losing weight. You’re fourteen pounds away from being obese.”
I look at my lap. It’s bad enough on my own. I didn’t consider how much worse I would feel with someone to witness this humiliation.
“Sorry.” Pike holds up his phone. “What’s your height, Skylar?”
“Five foot six,” I mumble.
“Five foot six? I’m looking at a chart that says a quote ‘normal’ BMI for that height is under 24.
9,” he says. “If she’s fourteen pounds from being obese, she’s also only eighteen pounds away from not being ‘overweight.’ Seems arbitrary.
Most Olympic athletes would be considered overweight, even obese, based on BMI alone.
I’m technically overweight too. So BMI’s not the whole picture. ”
BMI also has racist roots, but I know Dr. Wharton won’t care.
“You are fit and don’t have pseudotumor cerebri,” he says. The fact that he won’t even use the updated term for my condition shows his ignorance. “Most patients who lose weight are cured.”
That’s not true, though. Beyond the cure misinformation, while weight can contribute, most of the population would have IIH if that was the only cause.
“I haven’t seen that cure research,” Pike says, giving cure air quotes.
Dr. Wharton’s lips curl into a thin, practiced smile, the corners barely lifting. It’s one I recognize well, the kind that dismisses the conversation without saying a word. “That happens when you consult Dr. Google.”
“I consulted Dr. PubMed, actually.” He flips to another page in his notebook.
“It looks like there can be other causes, like compression, hormonal imbalances, autoimmune disease, medication, and post-viral illnesses. And while weight loss can help, many of the studies seem totally unsustainable, don’t you think?
Where they make patients eat”—he squints—“only four hundred twenty-five calories of rice a day?”
I nearly squawk. Pike found that old study?
“There’s scientific evidence that bariatric surgery helps pseudotumor.”
“Come on, man.” Pike scoffs. “Skylar doesn’t qualify for that.”
“Weight loss is better than getting a shunt.”
“Weight loss is more conservative,” I cut in. When Dr. Wharton goes back to typing, I draw a finger across my throat. If Pike keeps defending me, it’ll get worse. “But I’m not eating much already,” I say.
“Good. By next visit, I want to see the numbers. Two pounds per week. It’s a necessary part of your treatment plan.”
I curl my fists in my lap where he can’t see them. “That’s not feasible when exercising is near impossible with my pain.”
“She has a hard time just getting through the day,” Pike adds.
“How about a GLP-1 inhibitor?” I ask.
“Ask your primary doctor,” he says, unblinking.
“She won’t prescribe those if my BMI isn’t ‘obese.’ But new research shows they reduce cerebrospinal fluid secretion, so you could prescribe it and maybe it would help both issues.”
“It’s calories in, calories out, Skylar. We could staple your mouth shut, if it’ll help. How about that?”
It’s a matter-of-fact statement, said mildly to his computer screen. I hold my hand up before Pike can say anything. His face is a vat of boiling water. I get it, but I barely feel anger anymore, only defeat.
I take a much-needed breath and disregard his awful comment. “In the meantime, I’d like to get the imaging I requested back in November. To look for possible stenosis. I’ve read more about it, and a lot of patients have success with stenting.”
Dr. Wharton gets to his feet. “Lose the weight, then we can talk about other treatments. You’re in your own way here.” He smiles pleasantly. “See you in two months.”