Chapter Twenty
Jules
“Am I doing something wrong?”
“No…”
The noises he was making had me second-guessing myself. Little whimpers and sighs that I thought were signs of frustration turned out to be signs of approval and the desire for more.
“Please…” His voice is a quiet rasp, encouraging me to press my body against his, rolling into him with increasing desperation.
“Jules…” My name leaves his mouth like a plea, dripping with agonising need.
I recognise it because I feel it too, the need to chase the pleasure his body is giving me, but also to make it last as long as possible, drawing out the experience that we will only get once.
“Are we really doing this?” I press forward again, leaning in so our mouths are only a breath apart. The tension from holding myself above him runs through my arms, making the bed tremble and shake.
“Wait, stop…”
No, no, no… “Zander, it’s ok. It’s always been us, just you and–”
“I’m sorry… Please, don’t do this,” he cries out, the bed shaking more violently beneath us as his voice increases in pitch, “Please! Just– NO! GET OFF–”
The sound of the bed frame hitting the wall makes me jolt awake as my body sways side to side with violent force.
“Stop it, please…” Zander.
He must be having a nightmare. His voice had penetrated my alcohol infused dreams. Throwing the covers from my body, I roll out of bed and make my way up the ladder.
“Zander…” I place my hand gently on his arm and give a small shake. I don’t know what to do. I think I remember reading somewhere not to wake someone in this state, but how can I leave him?
“Dad…” Oh fuck no. I don’t care if he thrashes, hits, kicks– I will not leave him alone with that man, dream or not.
“Zander!” I urge, louder this time. Making my way up the bed, I settle on my knees beside his head.
“Zander, I’m here. Just listen to my voice.
” His dark hair clings to his forehead as sweat trickles down the side of his face, weaving through his stubble like a maze.
“It’s just a dream, you’re okay.” I shuffle to sit closer and wipe the beads of moisture from his temple with the hem of my shirt.
The contact causes him to flinch, his brows drawing together and mouth twisting in pain– his tortured mind mistaking my gentle stroke for a strike.
His unconscious reaction makes my stomach flip and my chest ache. It’s my turn to keep you safe.
“Jules, what’s going on?” Mom's voice comes from the doorway.
“He’s having a nightmare, and I can’t wake him up,” I barely manage to get the words out past the emotions flooding my voice.
Placing my hands under Zander’s head, I move slowly, sitting myself behind him, resting his head back down on my lap.
He doesn’t wake, not fully. The muscles in his neck strain and bulge with the intensity of his torment, as he whines and whimpers like a child.
My heart is breaking piece by piece with every noise he makes.
Every time his fists tighten in the sheets, my teeth clench harder.
Each tear that rolls down the side of his face brings my own closer to the surface.
I ignore my own grief and reach my hand to his hair, teasing the strands between my fingers and lightly scraping my nails along his scalp.
I absent mindedly trace the shape of his head and the back of his neck, whispering over and over–
“I’m here.”
“You’re safe.”
“Come back to me.”
I wish that was all it took to pull him out of it; just a few reassuring words and good intentions, but that's the kind of thing reserved for movies.
Instead, I hold him for what feels like hours, weighing up the cost of my silence versus the cost of his sanity.
The skin on my fingertips feels raw, and my shoulder aches from the motion of comforting him, but I continue anyway.
His body has given up some of the rigidity since I placed him in my lap, and his pained words are coming few and far between now.
My eyes burn as I fight to stay awake, but every so often, for a few short seconds, I let it win.
It's short-lived, though; Zander's random fits of movement end up startling me awake, and I start the process all over again–
“I'm still here.”
“You're safe.”
“I’ve got you.”
Mom fell asleep in the recliner chair, a blanket draped over her bony, fragile shoulders.
Once the intensity of Zander’s thrashing and shouting had eased, her body gave into the exhaustion she seemed to fight most days as she let it pull her under.
She looks so small and weak, not just tonight but all of the time.
The doctors know nothing, we know nothing.
It's just an endless loop of appointments and blood tests, scans and physiotherapy– none of which is working against whatever is ravaging her body.
Just the act of getting out of bed and going downstairs calls for rest breaks, the kind where she has to take a pause and sit down before her legs make the choice for her.
She seems to have almost accepted that this is what it is now, but not me.
I'm the one making sure she calls the doctors, chases results, and makes it to her next appointment.
The weight of the responsibility is heavy, but the loss would be unbearable.
The sun has started to rise. The light stretching across the ceiling is a visual victory confirming that we made it. I carefully slide myself out from under Zander’s head, placing a pillow there in my absence, and climb down the ladder. He doesn’t resist, he doesn’t even stir.
Reaching the kitchen, I turn on the cold tap and stick my head underneath.
I swallow gulp after gulp of water, my thirst so insatiable I think I’ll drown before my mouth feels even remotely moist. A shuffling noise coming from behind prompts me to turn off the tap.
I press the tea towel into my face and instantly feel more awake.
The alcohol from last night still lingers; my movements lag three seconds behind my thoughts, and my stomach churns and bubbles in protest.
“Morning, honey,” Mom grips the doorframe with both hands, propping herself up as her knees buckle beneath her. I’m by her side quicker than I thought possible, looping my arm around her waist and sitting her at the table.
“I’ll call the doctors and chase up your latest bloods today, they’ve got to find something this time. If not, then I’ll take you up to the hospital, they can’t just leave you like this–”
“Jules…”
“I’ll tell them that we’re not leaving without answers this time. Look at you, last week you could make it downstairs in one go, but now…” I busy myself making her morning coffee just how she likes it–
Two generous spoons of coffee mate, never milk.
Two level spoons of sugar
One level spoon of coffee, three taps to remove the excess.
“Jules, let’s have a talk,” she suggests. But I’m too tired to listen to her give the doctors the benefit of the doubt today. She always excuses their incompetence with her unusually misplaced kindness–
“There are other people who need their time more than me.”
“They’re human too, Jules. Let’s give them another chance.”
“They’re trying their best, let’s not push them.”
Not today. I won’t stand by and watch both pieces of my heart suffer.
“No, Mom. I’m not letting them fob you off again. We’re going to have coffee, get you dressed, and then–”
“I already know.”
Her voice immediately halts my ranting. The tension leaves my shoulders, and my fists uncurl from around the handles of the mugs.
Relief and hope surge through me from head to toe, and suddenly, my exhaustion is no longer.
It’s been replaced by the glowing prospect of normalcy, a future that doesn’t look like pain and strife– just living. Zander, me, and Mom.
“Well…?”
“Come and sit down,” she says. I don’t miss the hitch in her voice as she pats the seat beside her, forcing a smile. That’s when I know that whatever she has to tell me won’t be good news.
We’ve had this thing since I was a kid, at first I thought it was just her way of trying to get me to smile more and worry less, but now I know it to be true– “it’s a secret kind of magic, the type that only the people you love can sense.
It’s the happiness behind your eyes– it makes them feel happy too. ”
I don’t feel happiness, I don’t feel anything.
I go through the motions of walking across the kitchen and pulling out the chair, my body working on autopilot. I sit and let her take my hands in her own, looking at her without a single thought, only the undeniable knowledge and absolute certainty that this is going to change everything.
She talks and talks. So much so that I want to scream at her.
Force her to say the words I know she’s hesitating to put out into the air.
I know why she’s resisting; to speak them would also give them weight.
Mom lists the symptoms she’s been experiencing, the tests she’s endured, but falters when she gets to the findings.
“Tell him, Theresa,” Zander crouches between our seats. I don’t know when he came downstairs, but for the first time ever whilst being by his side, I feel the sharp sting of loneliness.
“What do you know that I don’t?” I look between them both. It feels a lot like those dreams where you’re shouting and screaming for someone to hear you, but no noise comes out.
“Theresa, he’ll never be ready.”
“Ready for what? Zander? Mom?” They don’t answer me right away, Zander simply nods, and Mom visibly deflates in her seat with a sigh.
“Honey, what I’m going to tell you is going to be hard to hear.
I thought I could wait… for what, I’m not so sure anymore,” she pauses, shaking her head as though she’s disappointed in herself, “You’ve always been so much stronger than I gave you credit for, but in my eyes you will always be the little boy I was put on this earth to protect and love.
” Her eyes shimmer with unshed tears. I can see the sparkle of happiness reflecting the words she speaks, her pride far stronger than whatever it is she has to tell me.
“Mom…?” My words are suffocated by the fear gripping tight. She sniffles and straightens in her seat, giving her head a wobble and clasping my hands in hers with a fierce kind of determination.
“I have ALS. My body is failing me, sweet boy.” Her hand cups my cheek as a single tear spills from both our eyes. She doesn’t move to wipe it away, nor does she fill the silence. We just look at each other, lingering in the space between acceptance and absolute devastation.
“They’re wrong.”
“Jules…” Zander’s voice comes through, reminding me he’s still here even though I feel totally and utterly alone.
“No, honey. They’re not,” she’s gentle with her words, imploring me to lay my trust with her, if no one else.
“I’ve seen what ALS does to people, what it ta-takes from–”
“I know, baby. I know.”
“Why are you accepting this? Why are you leaving me?” Tears fall freely now, I can’t stop them, just as I can’t stop time now that the pin has been pulled.
She’s been holding onto this information like a grenade wrapped in her palm, trying to limit the damage from those around her.
But in reality, all she’s succeeded in doing is concealing the devastation and taking away precious moments.
Moments I could have enjoyed for longer, moments I could have comforted her through, moments that I should have been there.
But she made that choice for me. She chose to keep me at a distance, away from the proximity of the impending explosion.
She wasn’t alone.
The thought is no more of a comfort than his presence right now. It’s just a glaring reminder that I wasn’t strong enough in their eyes. Always the nice guy, always the one who needs saving, always the outsider.
I’m angry at myself, as well as the two people in front of me. I can be enough, but they never gave me the chance.
“Jules, we just wanted to–” Zander starts. I can’t hear it, not right now. His judgment call–along with my Mom’s–is cruelly unfair and completely misplaced.
I realise that my own omissions place me somewhere on the hypocrisy scale, but I feel justified in the choices I’ve made so far, confident that he will thank me, one day.
My loyalty and dedication to them doesn’t stop me from leaving the room and flying through the front door.
I’m grieving the missed opportunities, yet I’m leaving them behind.
I tell myself I’m strong enough, that they were wrong to keep me out of the loop, yet here I am fleeing at the first sign of difficulty.
The contrast between my thoughts and actions are a complete contradiction to one another, but I need to be somewhere that isn’t infested with lies and deceit.
Once I reach the local park, I weave my way around the overgrown trees and make my way to the waterline.
Usually, it would be peaceful here, with only the sound of the water lapping against the bank and the leaves rustling above.
But my presence alone has disrupted the tranquillity the little clearing usually offers.
I relieve my legs of the weight of my body and emotions, dropping myself to rest against the rough bark of an old oak tree.
It’s sturdy and reliable– exactly what I need right now.
I also need the facts, however hard they might be.
I reach for my phone and hope it will offer something to cling to, while my mind throws out morbid thoughts, one after the other.
I need the dependency of science and data, not the words of two people who have withheld the truth from me.