Chapter Thirty-Eight
ZARA
After Hendrix and I celebrated the coming of a new day—literally—we went back inside, and he did what he does best and ordered way too much food for breakfast.
After we were fed and caffeinated, we got to business and started making plans.
I quickly discovered Eric is one of those people who likes to stay up late and wake up early. I was surprised when he called me late last night, and I’m just as surprised when he does it again, five minutes after I send him an early morning email.
“Eric, it’s eight o’clock,” I say, not even bothering to say hello, placing him on speakerphone.
“Actually, in Seattle, it’s five,” he states.
“Do you have insomnia or something?”
“Nah, I’m just a thirty-something single guy who works too much. Does your rock star boyfriend have any brothers? Or a single rock star friend, perhaps?”
I laugh. Hendrix’s eyebrow raises. Guess I forgot to mention that. It was just too fun to see him get so jealous. “Yes, but I think they’re all straight.”
“I think Evans is pan,” Hendrix interjects with a shrug. “And my brother Myles is bi. But he’s only twenty-five and not ready to commit.”
“You sort of just described the male version of Violet.” I joke.
“Too bad they didn’t cross paths at the LA concert. It would have either been a match made in heaven or a total shitshow.”
I hum in agreement before I hear Eric clear his throat. “I feel like we’re getting off topic,” he says. “And nothing about this conversation gets me laid, so…”
We both laugh. I could honestly kiss Eric. Hendrix needed a distraction before we get back into the heavy stuff. During breakfast, we had a very frank discussion. I went over the research I’d done last night, and I told him everything I know about focal dystonia.
After we talked, I suggested he see a doctor in LA since we would both eventually return there after the tour. We could even fly out today. The NYC concert wasn’t for a couple of days, and with Eric’s connections and Hendrix’s ties to the band, I knew we could get him in right away.
But Hendrix didn’t want to go to LA yet.
LA meant telling his family, and he wasn’t ready for that.
So we were headed to NYC. He’d see a doctor there, and if he was diagnosed, we’d arrange to transfer his care to LA after the tour.
“I’m assuming you’re calling to help us out with getting an appointment with a doctor in New York,” I ask, steering the conversation back on track.
Unfortunately.
We only have so much time before we need to head downstairs to the airport.
“Nope,” he answers. “I’m calling to tell you I already scheduled you an appointment with a doctor in New York.”
“What? How?” I check my watch. Yep. Still says eight o’clock. Well, a few minutes past now.
“I’m just that good,” he responds very matter-of-factly. “Now, the appointment is tomorrow at eleven. Does that work?”
I turn to Hendrix for an answer. This is his body. His career. His decision.
He nods. “Yes. Thank you so much for this, Eric.”
“No problem. And let me just say…” He lets out an audible breath. “I hope we’re both wrong.”
“Me too, Eric,” I say as I slide into Hendrix’s embrace. “Me too.”
Hendrix is one big ball of nervous energy by the time the doctor’s appointment rolls around the next day.
It’s been mounting since we left Boston, and now he can hardly sit still without his knee bouncing or that right hand of his plucking out a tune on his thigh. He’ll start and suddenly stop, either because his brain forces him to or because he remembers he might not be able to down the road.
It’s heartbreaking to witness.
Luckily, we don’t have to wait long to see the doctor. After checking in at the front desk, we sit in a small waiting area. The neurologist Eric recommended is located at New York Presbyterian. This place is a maze. I wouldn’t ever want to get lost in it.
We asked at check-in if they could avoid calling out Hendrix’s name. He already stands out with the guitar case strapped on his back. He doesn’t need someone pulling out a phone to sneak a pic when they recognize his name.
So when the nurse comes out, she simply signals for us. Hendrix takes a deep breath and grabs my hand, and we follow her through the double doors to an exam room.
Shaunda, that’s the nurse, follows us in and waits for Hendrix to set down his bass before asking him to take a seat on the exam table.
He glances at it and hesitates. He’s visibly nervous.
“Is it okay if he sits next to me for vitals?” I ask. I don’t usually like to interfere or pull rank, but for him, I will.
She nods and gives a friendly smile. “Not a problem.”
The look of thanks he gives me could melt a damn iceberg. He takes my hand as he sits down in the open seat, and I stay quiet while he answers all the nurse’s questions.
Finally, after she types a few notes into the laptop, she says, “Dr. Lin sent over all your records yesterday, so we have all your test results and his notes from your visit, but don’t be surprised if Dr. Deshmukh asks questions you’ve already answered. She’s very thorough.”
“Thank you.”
She leaves, and we’re left alone. Suddenly, the room feels five times smaller. I want to crawl into his lap, wrap my arms around him, and…
I let out a snort. “You were so right.”
His head turns. An amused smile tugs at the corner of his mouth. “I’m right about a lot of things. Care to elaborate?”
I roll my eyes but take a moment to memorize that tiny smile. I think it’s the first genuine one I’ve seen all day. “I was just mentally scolding myself for causing so much turmoil in your life. And all I wanted to do was turn to you and apologize. For all of it.”
“Even though it’s a disorder you have no control over?”
“Yeah.”
“Crazy how that works, huh?”
“It really is.” I lean back in the uncomfortable metal chair, wondering how many times in my life I’ve apologized for things that weren’t my fault.
Things I felt responsible for simply because I existed.
“I’m trying to remind myself that I can be sorry that you are experiencing anxiety or pain but not feel responsible for it. ”
He takes our joined hands and kisses mine, saying, “That’s my girl.”
Just then, there’s a knock on the door, and a few seconds later, a middle-aged Indian woman I recognize from my research walks in. Her dark hair is peppered with gray, and she’s wearing plain scrubs and glasses.
“Hi.” She offers her hand to Hendrix, then to me. “I’m Dr. Priya Deshmukh.”
“I’m Hendrix, and this is my girlfriend, Zara.”
“It’s nice to meet you. Eric spoke highly of both of you.” She sets her laptop down on the laminate counter and sits on the small stool in front of it. “Now, I’m sure you’re both anxious. So how about we get to it?”
We both nod.
She begins by reviewing his family history. Focal dystonia can be hereditary, but given how difficult it is to diagnose, there would likely be no record of it.
“There is, however, a slight chance it could be passed down to your children,” she states after explaining some of the genetic elements.
My stomach does a full somersault when I see the way Hendrix smirks.
After the baby bomb, she begins to ask when he started noticing the symptoms. Like the nurse warned us, many of these questions are redundant, but neither of us minds. I appreciate her being thorough.
“Does it ever happen when you’re not playing?” she asks.
“Only when I’m plucking out a rhythm,” he says before explaining, “It’s something I do when I’m bored or nervous.” His fingers twitch on his thigh. “Kind of like now.”
She smiles and nods. “My son plays the cello, and he does the same thing.”
She asks a couple more questions. Does he experience any pain? What makes it worse? What does it feel like when it happens?
Then she moves on to the neurological part of the exam. She tests his reflexes and strength. She has him touch the tip of each finger to the tip of his nose. He passes it all with flying colors.
None of us expected anything otherwise.
“Now, for the part of the exam that is slightly out of the ordinary,” she says after typing a few notes.
“I’m guessing this is why I brought my bass?”
“Yes,” she confirms with a warm smile. “I’d like you to play something, preferably a piece you’ve played in the past when you’ve experienced these symptoms. We’ll have you run through it several times since repetition seems to trigger it.
This will let me observe what the two of you have already seen. ”
And allow her to make her final diagnosis.
“Okay,” Hendrix agrees. He reaches over and grabs the case while I stand to give him space to play. He’s methodical as he places the large black case on the exam table and lifts each latch. When he pulls out the acoustic bass, he handles it as if it’s precious, like it’s part of him.
I want to scream.
This isn’t fair.
You could be wrong, a tiny voice inside me whispers. It’s my final sliver of hope, and I hold on to it as he slides the strap over his shoulder and takes his seat to perform what could be the most important show of his life.
He takes a deep breath, closes his eyes, and starts to play.
I recognize the song almost immediately. It’s quickly become one of my favorite Manic at Midnight songs. It’s called “Someday,” and it’s a song Asher wrote for their latest album. It’s as beautiful as it is tragic, talking about how he’s so alone, but maybe someday it will all be worth it.
Hendrix plays the chorus perfectly on the first and second tries.
But it’s the third that his fingers stick, and the music comes to an abrupt halt. He stares at his hand and the way his fingers curl, as if they just betrayed him.
Dr. Deshmukh nods and jots down a few notes. She doesn’t say anything but asks him to play it again. He does, five more times. He’s only successful on two of the attempts.
“It’s not usually this bad,” he tells her. “I can get through a whole concert with maybe one mistake, if any.”
“You’re stressed,” she explains. “That, combined with the repetitions, is causing your symptoms to worsen.”
“So I’m guessing I failed that test?” he says after she tells him she’s seen enough, and he places it back in the case.
“It wasn’t a test, Hendrix, and you are a very talented musician,” she says.
“But for how much longer?”
She folds her hands in her lap and tilts her head in a way that’s all too familiar, because it’s the same expression I have just before I deliver bad news to one of my patients.
My heart plummets.
“Based on your test results and what I’ve observed, I think it’s safe to say you have all the signs of task-specific focal dystonia.”
That last flicker of hope that I might be wrong fades as I feel Hendrix’s whole body go rigid next to me. Dr. Deshmukh notices it too and looks to me for guidance.
“Could you give us a minute?” I ask.
“Absolutely. Take all the time you need.” She grabs her laptop and stands. “Just crack the door when you’re ready.”
“Thank you,” I say, truly meaning it. I know she has other patients waiting, and considering we’re a work-in, this is more than generous. The door softly clicks behind her.
The room is blanketed in silence before I hear Hendrix suck in a long, ragged breath. It’s full of pain and sorrow. It breaks my fucking heart.
I get up from my chair and crouch down in front of it. His eyes are red and brimming with tears.
“It’s such a stupid thing to be upset about.” He lets out a hollow laugh, wiping his eyes. “It’s not like I’m dying. Hell, I’m not even in pain.”
I reach for him. He covers his hands with mine, holding onto them like a lifeline.
I wait until his gaze finds mine, then I say, “Story Time.” My voice is a little hoarse and tinged with emotion, but this is our thing.
If I can get through to him, this will be how.
“I read about this musician last night—a guitar player. He was diagnosed with focal dystonia in the late nineties, and the process took years. Before his diagnosis, he sank into a deep depression and stopped performing altogether. He couldn’t trust his own body to do what he’d trained it to do. What he loved to do.”
A single tear falls down Hendrix’s cheek. I know this is the future he is envisioning for himself. I know the reality of the diagnosis is probably causing him to catastrophize and see only the worst possible future.
I need him to know there is hope, even when it feels utterly hopeless.
Maybe I need it too.
After his diagnosis, everything changed.
He finally had doctors willing to treat him.
He was able to stop focusing on what didn’t work and focus on what did.
And that’s when he realized…he had a perfectly good left hand.
So he started teaching himself how to play the instrument he loved, all over again, with his other hand.
I see a tiny flash of emotion in Hendrix’s eyes, and I feel my chest tighten and my eyes sting.
“It’s okay to be upset, Hen. It’s okay to feel sad or angry.
This is something you love, something you’re passionate about, and it’s not fair that this is happening to you.
And it’s not because some musician or band is fucking you over.
It’s not due to a lack of opportunity or talent.
It’s your own damn body that’s betraying you.
So no, you’re not dying, but that doesn’t invalidate your feelings.
You’re allowed every one of your emotions. ”
It’s as if those words shatter the last of his defenses. His face crumbles, and the tears begin to fall. I climb onto his lap, and he wraps his arms around me. He holds me tight, and I listen as he mourns the life he could have had.
And tries to make peace with his new reality.
“Fuck, Zara. I don’t—” His voice cracks as he buries his face into my neck. “I don’t know who I am without music. When you said people have layers? I don’t. Music is all I’ve ever have. It’s the only thing I’ve ever been good at.”
“That’s not true.”
“It is.” He’s adamant. “I was never good at sports like Myles. I couldn’t play the piano like Cash or sing like Presley. I was decent at school, but not a brainiac like Mercury. That bass”—his crestfallen gaze lands on his black guitar case—“is all I had.”
I lift my head. “You have me. And I don’t know much about sports, but I know you’re pretty damn good at loving me.”
Those denim blue eyes burn with intensity as his mouth curves into a warm smile. “Fuck yeah, I am.”
My forehead touches his, and I run my thumb along his cheek, wiping away the last of his tears. “You ready to kick some ass?”
He nods. “Yeah. Let’s do this.”