by Ian O Lewis
It was a fatal genetic disorder described as having Alzheimer’s, ALS, and Parkinson’s disease all wrapped up into one tragic bundle. There were seriously no good outcomes for these patients. And the list of symptoms was incredibly long. Depression, mood swings and psychosis were common mental ailments for Huntington’s patients, while unsteady gait and involuntary muscle movements affected them physically.
There were three stages of the disease, and from my very limited observations of Serge’s aunt, I’d guess she’d just entered the third and final stage. If I was correct, soon she’d no longer be able to walk, even with her walker, plus she’d need round-the-clock care, which she was already getting. Her ability to speak would vanish, and when death came, it would most likely be from suicide, choking to death, heart disease or pneumonia. That poor woman. She was so kind from what I’d seen, like a delicate little bird. Nobody deserved that fate.
Then I remembered that Serge’s mother had passed away, but he’d never told me how. I sat back in my chair and sipped on my bottle of water. What a horrible burden for Serge to carry, all this tragedy... suddenly it dawned on me what Spencer had been trying to tell me. I dropped the bottle of water, its contents spilling all over the tiled floor.
Fuck, it was genetic.
Serge could have Huntington’s Disease. How had I managed to ignore that reality, though Spencer had done his best to... shit, Serge might die from this?
“We need to talk.”
Serge was standing in front of me, his eyes red and cheeks wet. He’d been gone for over an hour, and every single second he was away my fears and suspicions grew. Damn, all I wanted to do was hold him, but something held me back.
Fear.
I was glued to the chair, unable to move. I deliberately held still, knowing he was feeling a million times worse than I was. But, now that I understood what he was going through, there was no way I couldn't tell him how I felt, but I knew I had to give him space.
I nodded and waited for him to say what was on his mind. He stood there for a few moments, I guessed trying to figure out what he wanted to tell me, then collapsed into the chair next to mine.
“I don’t know how to say this.” Serge murmured, leaning away from me.
“How... is your aunt?”
“She is in ICU. Turns out food particles found their way into her lungs, so now she has pneumonia. She’ll most likely recover, but this isn’t... good as far as her long-term health is concerned. I have to figure out different plans for her care, because the assisted living facility she lives in isn’t ideal for someone with her, um, diagnosis.” Serge said. He drummed his fingers on his knees a few times then popped out of the chair.
“We can’t see each other anymore Joshua.” The words flew out of Serge’s mouth. “I have too much going on, and this is only going to get worse. Please forgive me, though I know I will never forgive myself for allowing this to happen.”
Serge avoided my eyes while tears streamed out of his.
“You can’t mean this Serge, you told me you loved me, that…”
“Please don’t make me say this, Joshua.” He mumbled, then a little sob made his chest heave. I stood up and tried to put my arms around him, but he shrugged them off.
“I love you Serge, we can work through…”
“Damn it, Joshua. This isn’t about love. You are the only man I’ve ever felt this way about, but I just can’t... I got to go.” Serge spun around and ran out of the waiting room before I could say any more.
I sat in that hard chair for two more hours, hoping Serge would return. The ER was a nightmare, and nurses and doctors were scrambling to keep up. Every few minutes I’d glance over to the nurse’s station to see if Spencer was free, but he was swamped with patients. Finally, every shred of hope I had left was obliterated, so I got to my feet and trudged out the sliding glass doors.
Serge was gone, and he’d taken my heart with him.
24
Josh
I spent the next week in a fog. My recycling bin was filled up with wine bottles, and empty Chinese takeout containers. I’d taken to using the back door to my apartment to come and go, so I wouldn’t have to face Luke or Sneaky. I’d told no one what had happened, though I was sure Spencer had probably alerted them. I wasn’t ready for their questions, when I had so few answers.
Serge didn’t show up to work the next day, or the rest of the week. His assistant conductor took over his duties temporarily. They either didn’t know when he was returning, or they were keeping mum about it. I tried fishing for information from Serge’s secretary but she knew less than I did.
When Serge and I had gone to the hospital, we’d stored my cello in his office, and it nearly took an act of congress to get the human resources director Angela to open it. She finally ended up calling Serge for permission. The call took less than ten seconds. I could hear his voice through her phone, and he was not pleased to be hearing from her. When she disconnected the call she winced. A curious expression passed over her face, and then it was replaced by an accusatory one. It was if she wanted to say, “How did you fuck this up? He was so happy, and now he’s back to his surly self.”
Onnie Belle knew something was wrong and to her credit she mostly left me alone. It surprised me. No one fished for gossip, and no one asked awkward questions. It seemed like most of the orchestra went out of their way to be extra kind, as if they’d somehow known all along there was something between me and their conductor.
I hated the word was.
My phone never left my side, and each time it rang or pinged my heart would leap into my throat, hoping it was him. I was dying to hear his voice, to know he was okay, but I couldn’t press him right now. He had to take care of his aunt, and whatever internal demons were haunting him. It would be the height of selfishness for me to assume I was even remotely on his radar, or maybe I was just too damn scared to reach out to him.
“We need to talk.”
Sneaky stuck her foot through the open door to my apartment, so I couldn’t shut it on her. It was Saturday night, and I could hear the low roar of music and people coming from her bar next door. I shouldn’t have opened it, but since I hadn’t answered her calls or texts, I knew she’d end up here, eventually. If I didn’t talk to her, within the next day or so she’d have all of our friends in tow for an even bigger confrontation. So, I opened it all the way, and she breezed by me and sat on the couch in the living room.
There was a half empty bottle of Shiraz on the coffee table. Actually, there was an empty bottle on it too. Without asking I retrieved a wine glass from the kitchen and when I got to the sofa, I filled it and handed it to her.
“Serge showed up at the bar last night.”
“What?” That made zero sense. He wasn’t even that much of a drinker. My eyes glazed over, and I felt pressure building under them.
“Well, he didn’t come inside at first. My friend Hannah was at the bar and when she went to leave, I walked her outside. Serge was at the window of the coffee shop peering in. When he saw me he turned to run away, but I’m sure you know me well enough by now… anyway, I steered him into the bar and sat with him. Gave him a couple of shots and loosened up his tongue a bit.” Sneaky picked up the wine glass and almost drank from it, but put it back on the table instead. “He, shit Josh, I don’t know how to tell you this, but…”
“What? C’mon, I’m a big boy, I can handle it.” If I said that enough, I might start to believe it.
“He looked like he hadn’t slept in days. Serge didn’t talk at first, and I was smart enough not to bring you up. I wanted him to initiate that conversation. When he finally decided to open up, he asked about you. I told him the truth, that no one had laid eyes on you in days. That’s when he started crying. Not blubbering or anything, just, you know.”
Tears threatened to spill out of my own eyes. Damn it, I was so selfish worrying about myself instead of what he was going through. Sneaky patted me on the knee and continued.
“It
was his mother’s birthday. He mentioned that, then said that was why he broke up with you.” Sneaky gulped her wine.
“What the hell?” I muttered.
“He asked me if you had told me about his aunt being sick. I reminded him I hadn’t seen you for a few days, that you’d not said a word. Then he asked if Spencer had spoken to me. Again, I said no.”
“He wouldn’t have spoken to you. He’s not allowed to talk about confidential patient stuff.”
“That’s what I figured. So, I asked him what his mother had to do with you.” She took a deep breath then grabbed my hand. “By this time he was slurring his words pretty bad. It turns out his mother committed suicide, that she was very ill and took her own life instead of… I’m not sure. The rest was kind of weird. Like, I think she had some awful illness and decided she couldn’t handle it any more?” She took another healthy swallow of her wine. I downed the rest of mine and refilled both of our glasses.
I felt my chest heave with a half-stifled sob. It was one thing to lose your mother to a terminal illness, but to have her take her own life? What kind of scars would that leave on her only son? I could only imagine the guilt she’d left behind for her family to deal with.
“You okay?” Sneaky asked. She opened her arms, then I crossed mine over my chest and took a deep breath.
“No. Oh my God, that’s why he… shit. Sneaky, I think he’s got the same illness as his mother and aunt. Huntington’s Disease.”
I explained what that was, even pulled out my laptop and showed her the websites I’d been studying all week. Then I told her about what happened at the hospital with him and Spencer.
“So I think that’s it. Since we’ve met, he’s occasionally dropped stuff, and he’s always trembling, or shaking his leg. I thought it was just nervous tics, but the more research I’ve done, the more I’m convinced he’s got it.” I finished off the wine and was about to pour another glass and realized the bottle was empty.
“As your friend, I should tell you to cut back on the sauce.” Sneaky picked up her glass and finished it. “But, I think this is one of those occasions that warrants a little chemical forgetfulness. Do you have to work tomorrow?”
I shook my head no.
She grabbed my hand and stood up from the couch. “Get some clean clothes on. You look like shit. You’re coming downstairs with me.”
I took a quick shower and threw on a pair of jeans and a t-shirt. While I was getting changed, she’d apparently notified the gang about the situation. When we got to Sneaky’s bar, Spencer, Michael, Erik and Kent were seated in our usual booth in the back. Usually, the thought of a group interrogation would’ve filled me with dread, but after hiding away for a week I was glad to see them.
Normally we were a boisterous bunch, but tonight the table was somber. No one said a word for the first couple of minutes. Finally, Spencer broke the ice.
“I haven’t breathed a word about this to anyone, not even Michael. But, maybe you should... it might help to talk. And Kent is a doctor, he’s going to know more than we do about it.”
Sneaky had gotten us all a round. My stomach turned in on itself at the thought of more booze, but I forced myself to sip my beer. When I looked up every eye was filled with concern. I took a deep breath and forced it out.
“Serge’s aunt was admitted to the hospital. Turns out she has Huntington’s Disease.” Michael and Erik looked at me quizzically while Kent reached over and patted my hand. “He broke up with me that same evening, saying it was out of his control.”
“Is that like cancer or something?” Michael asked.
“No, it’s a genetic nerve disease, but like extra bad, and no one recovers, ever. Anyway, I found out his mother committed suicide, which is a common way for people with the disease to die. Their condition becomes so horrible they prefer death. Now, I don’t know if she had the illness, but since it’s genetic and his aunt has it, I’m assuming the worst.” Fuck, I felt tears welling up again and swiped at my eyes with the back of my hand. “I think he has it too. That’s why he broke up with me, because he didn’t want me to be…” My words trailed off, still unable to comprehend the situation in its entirety. Or rather I could, but if I faced the reality, I would completely lose it.
A shadow fell over Kent’s face. He opened his mouth to speak, then shut it.
“What?” I asked.
“I’m a GP, so I’m no expert on Huntington’s Disease, but I worked with a few patients while in med school. Josh, I think what’s happened is he wants to spare you the burden of being his caretaker. The two of you just started seeing each other a few weeks ago, and, hell man, I wouldn’t wish that on anyone.”
Self-pity flooded through me for what seemed like the hundredth time over the last week. Fuck, I’d spent years waiting for the right man, not even knowing what love was remotely like until now.
“How long do people live with it? Because he seemed pretty healthy to me.” Erik piped up. “Maybe he doesn’t have it.”
I wanted to scream. Instead I moaned.
“What’s pissing me off is that he’s taking this decision out of my hands entirely. I mean, maybe I would rather have a few good years with him than none at all. This isn’t fair.” Anger surged through me.
“Josh, you need to think long and hard about what you just said. They can live for years, never getting better, only getting worse. I think Serge is trying to spare you, because he cares enough about…” Spencer started, but I slammed my beer mug on the table, silencing him.
“Fuck that. I love him. This isn’t fair.”
I jumped up from the table. I couldn’t talk about this any longer. As I stuck my key into the lock of the door connecting the bar to the coffee shop, I felt a hand on my shoulder.
“What?” I growled then turned around. Michael was there, his arms open. I stared at him for a long moment and then he pulled me in for a hug.
“It’s not fair.” I whispered, then sagged into his arms.
25
Serge
Finding a new home for Aunt Svetta consumed me while she healed in the hospital. A typical nursing home facility with memory care services didn’t want to deal with someone with her advanced stage of Huntington’s disease. The nurse I had working with her, Barbara, had also decided she could no longer provide the level of care my aunt required, but she’d proven to be very helpful with the search for a new home.
The primary obstacle was that Aunt Svetta had developed serious depression. I was angry that the staff at Westminster Canterbury had bluntly told me they wanted her gone. Aunt Svetta, despite her illness, was one of the kindest, least problematic people I’d ever known. In my eyes they were discriminating against her because of the disease, not taking the time to get to know her themselves.
Finally, I found a small facility in the city’s Northside. When I first saw it, I almost didn’t get out of the car. The paint was peeling on the mud brown shutters, and the grass was overgrown. But, they were one of the few nursing homes in the area that dealt specifically with people with Huntington’s and other brain disorders. Plus, they would allow me to employ a private nurse, in addition to the care they’d provide.
The visits with my aunt were painful, to say the least. Her body was responding well to the antibiotics, and she was out of ICU. But, I wasn’t sure she knew who I was anymore. The doctor reassured me that she could still understand my words, but I had my doubts, because she no longer responded. In ways this was worse than Mom. She’d taken her own life before she had progressed to these latter stages. Unfortunately, I was beginning to understand Mom’s motivation for dying on her own schedule, instead of waiting for the cruel injustice of being locked in your own mind, unable to function on even the most basic of levels. Damn, it hurt so bad when she left us, but now I was seeing what she’d avoided, and any residual blame I harbored toward her was evaporating.
The constant stream of hospital visits and figuring out the future of Aunt Svetta’s care had only one silver lining.
It allowed me to not think of Joshua. Actually, that’s the wrong way of putting it. I never stopped thinking of him, but the insane list of things I had to do for my aunt kept me busy, so I couldn’t indulge in self-pity.
Every night when I closed my eyes though, the first thing I thought of was him, and he was the last too. When I woke up, usually after only a couple of restless hours, his name was on my lips. I started hugging my pillow and pretending it was him in order to get any sleep. If I didn’t give in to the fantasy of having him in my bed, I’d spend an entire night without sleep. But, I knew what I was doing was for the best. Well, at least I thought so, but doubt was creeping in.
One night the need to hold him was so bad I threw the pillow across the room and hopped out of bed. I had picked up a bottle of vodka from the ABC store the day before, hoping it would help me rest better. The first night it had, but on that night it had the opposite effect, making me restless and frustrated. I’d attempted to play the guitar, but my fingers would slip over the strings fucking up the notes, so I threw it across the living room. After a couple of bangs on the wall from the neighbor I put on some clothes and hit the sidewalk, hoping to tire myself out.
Being half-drunk and unable to keep my thoughts off of the man who’d made me feel hope for the first time in decades, it was no surprise I ended up in front of Joshua’s coffee shop. The lights were off upstairs in his apartment, so I figured he was asleep. My hand reached for my phone instinctively, wanting to call him to let me upstairs, so I could feel the heat of his body against mine. That’s when I saw the date on the screen; it was Mom’s birthday, and I’d totally forgotten about it.