Chapter 56
chapter
fifty-six
“It’s not that they don’t care. It’s that they don’t look close enough.” – Haven
HAVEN
My legs are still wobbly, and I’m grinning like a loon.
“I think I’ll make steaks for dinner,” I say, leaning my head back under the warm water, eyes closed as I rinse the conditioner out of my hair. “Does that sound good?”
“I’m not really hungry,” Cy says from somewhere near the sink.
“How can you not be hungry? I’m starving.”
Something slams loudly with a bang. I jump and look to see Cy on his knees, clinging to the sink.
“Oh my god, Cy.”
I shut off the water, open the glass door, and don’t even bother with a towel as I rush to his side.
“What’s wrong?”
“Pain.”
With a shaky finger, he points to the meds on the counter. He winces, jaw locking as he trembles.
“I’ll get it for you, but let’s get you over to the bed.”
“But…”
“Don’t argue with a wet naked woman.”
Cy tries to smile, but it fades quickly, and he jerks a little as if there is an invisible knife stabbing him. Wrapping his arm around my neck, I put mine around his waist, and with what seems like a great deal of effort, he pushes himself up enough to walk.
We make it to the bedroom, and I help him lie down before rushing back out to get a glass of water and the pill bottles. I hate that I don’t know what he needs.
Cy is on his side in the fetal position, trembling, when I return. Seeing him like this scares the shit out of me.
“Which one?” I hold them up one at a time.
“That…one.”
I read the instructions before opening the bottle and dropping a single pill into my hand. I help him to sit up enough to take it and a mouthful of water, then I watch helplessly as he flops down like that few seconds of strain is just too much.
Guilt fills me. We did too much. Whatever this is, it doesn’t like it when Cyrus exerts himself.
“What else do you need?”
“Nothing.”
“Okay, I’m going to put some clothes on. I’ll be right back.”
“But…I like…this look.”
I smirk. “I bet you do. That’s what has done this to you.”
Before I can move, Cy reaches for my hand.
“No, not you.”
His eyes beg me to agree.
“Are you feeling up to answering some questions for me?”
He nods. “Why?”
“Because I’m going to figure out what is happening to you.” Cy’s gaze locks with mine. “Don’t bother trying to argue. I’m doing this.”
“Okay.”
I kiss his cheek, then jump up quickly to get dressed and grab a coffee before sitting down with my laptop on the bed beside him. Cy rolls over to face me, and I decide the best place to begin is the beginning.
“What was the first symptom you noticed, and when was it?”
“Not long after…Patrick died. Pain.”
“What kind of pain? Sharp piercing, throbbing, a deep ache.”
“Deep ache and stiffness. Sometimes a stabbing pain that steals my breath away.” He licks his lips. “Sometimes swelling.”
“Okay, and where in your body?”
“Joints.”
“Any particular one?”
Cy pauses, and his brow furrows in concentration.
“It started in my fingers, then my knees. I don’t know…it wasn’t all at once, it progressed.”
Question after question, I type out his answers. Every time I ask one, three more pop into my head. Everything from what other doctors have said to what he is experiencing currently.
I immediately throw out the cocaine use and any addiction symptoms. I’m tired of everyone assuming that’s his problem. Whatever this is started before he ever used hard drugs. I want to come at this from another angle.
Before I know it, Cy is sound asleep and has stopped trembling. Grabbing the blanket, I lay it over him. I go downstairs to pour a fresh cup of coffee, then climb back onto the bed beside him with the computer on my lap. Time to deep dive.
It’s three in the morning when I stumble into a chatroom for people suffering from autoimmune diseases.
Using a fake name, Jen, for anonymity I pretend I’m Cy and explain the daily struggles.
Everything from what diagnoses I’ve received from doctors who have no clue.
I tell these strangers that none of the medication is working, and I’m only getting worse.
By the time I’m done, I’ve written a novel and hit send.
The wait isn’t long. A flurry of activity fills the screen.
So many commenters share their experiences of feeling lost and terrified, of doctors handing them meds and moving on because their symptoms aren’t indicative of just one illness.
So many heartbreaking stories of people scared to wake up, scared to sleep, scared to eat, travel, or live.
How can there be this many people suffering in silence, begging for help, while no one listens? And then one user sends through a direct message that changes the trajectory of my search.
TryingToGetBy: Hi there, JenHope1. I read what you’re going through, and I’m so sorry.
I, too, had many of those symptoms, but my doctor caught that I had Lupus fairly early.
I don’t know if that is what you have, but it sure sounds like it to me.
I can’t imagine suffering that long and being prescribed all those medications.
If you have Lupus, then some of those medications will only exacerbate your pain, not make it better.
My fingers fly across the keyboard.
JenHope1: Can Lupus be misdiagnosed as Schizophrenia?
TryingToGetBy: Yes. It’s not common. But it can happen, usually, if you have neuropsychiatric lupus.
It affects your nervous system and causes hallucinations and paranoia.
That sort of thing. If those symptoms show up, there is no family history, and you haven’t experienced pain or a butterfly rash, etc.
From my notes, I know Cy says he was extremely moody and paranoid. That’s why he started drinking heavily, partying more, and then moved on to harder drugs.
TryingToGetBy: You mentioned recreational drug use. This can also cause a misdiagnosis, but you’ll want to get tested, of course.
JenHope1: Where can I go to research this more?
TryingToGetBy: I’ll send you the websites. I hope it helps.
My mouth falls slack as I open site after site. It’s a catalog for everything Cy has suffered. Why has no one checked this before?
Rage I’ve never experienced fills me. A fucking blood draw is all it takes. Not one doctor he has seen thought, “Hey, maybe let’s check for these markers just in case.”
What the fuck?
Sleep is an afterthought. I get up, go downstairs to the small home office, and print off everything I can find on Lupus.
Treatments, symptoms, medications, I leave no stone unturned.
The journey takes me down a rabbit hole of dozens of autoimmune disorders I’ve never heard of before.
Each one has stories of individuals who were suffering with a mysterious ailment that doctors misdiagnosed for years.
They are left to struggle in the dark, alone, figuring out how to manage symptoms of an illness they have no name for, because what they have isn’t mainstream. My heart breaks.
“What the hell is going on?”
I whip around at the sound of Cy’s voice. He is staring at the kitchen island that I’ve completely covered with my research. It’s chaotic, but I understand the mess.
“What are you doing out of bed?”
He blinks and points at the window.
“It’s ten thirty in the morning. Did you sleep at all?”
Sunlight is streaming in, and I shake my head.
“No. No, I guess not. I couldn’t. I was too focused and didn’t want to stop.”
Cy steps up to the counter. He seems almost afraid.
“What is all this?”
He picks up a stack of paper and thumbs through it before looking at me.
Walking over to him, I grab his hands.
“Please, don’t get your hopes up. I’d hate for you to do that, and then I’m wrong. But…I think I figured out what you have. Well, at least I’ve narrowed it down to the three most likely candidates.”
The corner of his mouth twitches.
“You think you figured out in one night what doctors couldn’t in years?”
“Yes…yes I do,” I say, smiling as I’m filled with pride. Fuck those doctors. I let go of Cy’s hands and turn back to my bundles. “Which doctor, of all the ones you’ve seen, seems the most likely to listen and want to help?”
Cy crosses his arms.
“Hard to say, but I guess Doctor Stevens. He’s the one I saw after collapsing on stage.”
“Okay…Reno, it is.”
“What are you talking about?”
“You’re going to call him and book an appointment. Pay whatever you need to, just get in to see him as soon as possible. I’ll tell my father to send us the jet.”
Cy touches my shoulder, and I look up at him.
“Haven, calm down, we can’t just—”
I place my finger on his lips, and he stops, eyebrows raised in shock.
“Do you trust me?”
“Yes…but…”
“No buts. It’s a simple yes or no question.”
“Yes, of course I trust you.”
“Then we’re doing this. Do you feel well enough to pack?”
“Yes…but…”
Cy holds up his hands when I glare at him.
“Okay…okay…I’ll go pack. But first.” He grabs me and pulls me into a hug, kissing the top of my head. “Thank you.”
I wrap my arms around his waist and hold him tight.
“Don’t thank me just yet. We don’t know if I’m right.”
“I don’t care,” Cy mumbles. “The fact that you care enough to try and figure it out…means everything to me.” Pulling back, his eyes shimmer with unshed tears. “You do know that I’m fucking obsessed with you, right, Butterfly?”
My lip curls up.
“As you should be,” I tease, making him laugh.
It is so good to hear the sound after watching him suffer all night and being terrified for him.
We kiss softly, our lips barely touching, before Cyrus walks out of the kitchen, with stiff, measured strides.
I stare after him, fearing that all along, those who have treated Cy saw only what they wanted to see.
What’s easy. They saw a rockstar partying too hard and crashing out.
That’s the easy explanation. They fit him into a box and missed the man under the assumptions.
That’s over now. Cy won’t fight this alone.