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"Please let him wake up," I whisper. I don't even realise until I add a quick 'amen' afterwards that I'm praying at the side of Joel's hospital bed like a 'good little Christian', as my mum would say.
The fact is, I'm the type of person my mother would loathe if she knew that I only pray when something bad happens. Just before we told my parents about the pregnancy, I uttered a prayer of strength. When we had Gabriel adopted, I prayed. When my waters broke, I prayed. I prayed when I let go of his tiny hand. Now Joel is sick, I'm praying. But when life is normal, when I have nothing to want, I don't believe.
Does that make me a bad person? Mum would say it does. But what is bad? I guess it's all relative. I guess I've never really known anything beyond the fact I don't think God is, well, real. Do I believe in a higher spirit?
Potentially. I think something or someone is listening. Karma? Maybe because of what's happened to me. God? I don't think so, or at least not the Church of England God.
But it doesn't hurt to whisper a prayer for something, just in case.
I pull my phone out of my pocket and check the time. I see the date and realise we've been married two years today. Happy anniversary to us, I suppose.
I hear him move. His mouth utters something incomprehensible. I watch his blue eyes slowly, ever so slowly flicker open, adjusting to the light and the white, sterile surroundings. They finally land on me, and his confusion becomes obvious. His hand slowly grabs for mine, and I lace our fingers together before pressing the call bell with my free hand.
"Aspen," he whispers. "Where am I?"
A sigh of relief comes from my mouth that I didn't know I was holding.
"Hey, don't try to talk. You're okay Joel. I'm here," I coo as two staff members rush in. They turn the call button off, and I step back from the bed. "He just woke up. Pressed the button straight away."
The man in green scrubs – who I think is the doctor – nods and starts shining lights in Joel's eyes, talking to him about if he remembers anything while the nurse stands by my side.
The nurse and doctor discuss something in medical jargon while I stand there, waiting for Joel to look at me. He doesn't, though, and I wonder why.
"How do you feel, Mr Watkins?" the doctor asks.
"Fine, just thirsty," Joel manages. His voice is croaky, his eyes keep scanning everything around him. "What happened?"
"Your wife found you in your kitchen: you had an epileptic fit," the doctor says. "I need to go and get your notes from the desk. Jane will help you sit up and get you a drink while I get them."
I go to question why he doesn't have the notes on him, when I realise it's because I called the emergency bell instead of the normal one.
Joel nods and Jane, the nurse, springs into action. I perch on the chair as I watch the nurse pour him a cup of water, put the straw in, and hold it out for him. He guzzles it down in two sips.
She moves the bed up, fluffs his pillows and finally, Joel looks at me. Something about the way his eyes dart backwards and forwards fills me with dread.
"You're not an epileptic, Joel," I whisper.
"No, I'm not." He shakes his head. Something in his gravelly voice racks my brain, and I recognise a sense of guilt. I watch his hands fiddling with the blanket across his lap. His wedding ring shines in the yellow light of the lamp on the bedside table.
Something isn't right; the way he's fiddling nervously, he won't look at me—
"Right, Mr Watkins." The doctor appears, saving him from my questioning. I notice the wad of notes in his hand is bigger than I would expect. I read the doctor's badge 'Doctor Samuel Daniels'. He looks so young to be a doctor.
"Aspen, why don't you get a coffee?" Joel sighs, but his eyes won't meet mine.
"No, I'll stay here," I reply. The doctor pulls the curtain around the bed despite no one being around us. He glances at me sympathetically before looking at Joel.
"I'd just like to ask you some questions if that's okay," the doctor says. Joel nods. I reach for his hand, but he doesn't reciprocate.
"Have you been noticing a lack of concentration recently? Could be in anything—work, reading, that kind of thing?"
Joel sighs as if he knows where this could be going. I remember him earlier saying that's why he asked for an extension for his university work.
"Yes, it's kind of like brain fog. Especially with my uni work... it's quite... distracting," he replies.
"What could that have to do with his seizure?" I question, but no one gives heed to me.
"Have you noticed problems with movement? Maybe some involuntary movement or stiffness of some kind?" the doctor asks. He's writing as he speaks, and I know there's some sort of unspoken knowledge between everyone in this area apart from me.
'And you will know the truth, and the truth will set you free' is all that comes to mind, and I can hear my Mum reciting it many times as I silently ask whatever is up there for some sort of sign.
Aspen, concentrate.
"Yes, I've noticed sometimes my hand goes stiff and my legs sometimes go numb or something like that," Joel answers.
"Any behavioural changes?"
"Not that I know of, but my concentration, you know. It'll make me not want to do stuff because it might happen, so why would I start something, if you know what I mean," Joel says.
The doctor nods and notes it down before asking, "And you've never had seizures like this before?"
In response, Joel shakes his head.
The doctor nods again. "I think you know where this is going, with the positive genetic test when you were eighteen, right?"
Joel nods but doesn't speak.
"What?" I question.
"I'll go and speak to the specialist team. Unfortunately, this would indicate that you have the onset of Juvenile Huntington's Disease."
Three words. Singular, but they should be heavy, except I don't get it. I have no idea what that is. Disease, it's a bad thing. Pestilence, one of the four horsemen of the apocalypse. Mum used to refer to them all the time as a bad thing.
So this is a bad thing.
But I don't understand it. I've heard of it, but I don't know what it means.
"What?" I question again. "Joel, what test?"
He refuses to look at me. The doctor glances between both of us for a moment and shifts uncomfortably at the foot of the bed.
"What is Huntington's and what test? What is he on about Joel?" I ask.
"Shall I leave you to discuss this?" the doctor asks, and Joel mumbles an agreement. "I will go speak to the specialist, either a doctor or a nurse from the clinic will come and speak to you both."
The doctor and nurse walk out, leaving Joel and me in awkward silence.
Blood stops pumping, instead threading through my veins, the trepidation sneaking up my spine and forcing my teeth to chatter.
"Aspen..." He stops speaking and sighs.
His silence fuels my adrenaline to pick up. He knows, I can tell he does, he wouldn't have a test otherwise.
My hands quiver like autumnal leaves in my lap. But I need to be strong here. I need to know what this is.
"Joel, what was the doctor on about? What test? What is Huntington's disease? Why does he think you have it?"
His eyes finally meet mine, and we share a silent moment of realisation. Since I met Joel two years ago, we've had this thing where one look from the other in a serious situation will tell us all we need to know. The context and eye contact will give us what we need.
When he meets my gaze, I know. I know he's been hiding this from me, and that there is so much more to this than I thought. But I want to hear it.
"Tell me now," I whisper.
He sighs and drops his eyes to his hands. "You remember when I told you about my dad? How he killed himself when I was sixteen?"
I nod. We never talk about it because he finds it too hard. I've only ever discussed Frank once with his mum, Monica. It's like a forbidden topic, and I know why.
'Do you not know that you are God's temple and that God's Spirit dwells in you? If anyone destroys God's temple, God will destroy him. For God's temple is holy, and you are that temple.'
"What about him?" I ask.
Joel glances away. Tears are building up in his eyes. I want to reach across and wipe them away, but somehow that feels like too much right now.
"Thing is, he died because he had Huntington's disease. He killed himself because he didn't want to get worse than he already was. He was already declining and had symptoms, and he didn't want to end up unable to do anything and depend on Mum and others for help. So, he killed himself."
"Why didn't you tell me?" I demand.
He ignores my question and shakes his head. "Turns out it's hereditary, but I couldn't have the test until I was eighteen. I chose to have it done just before we met. Took a long time for the results, and I actually found out the week we found out you were pregnant... that I have that stupid gene."
I look down into my lap, my hands are leaves in the wind, and my whole body feels weightless with this strange news.
I don't understand.
"Surely there's a cure—"
"There's no cure, Aspen. It's progressive. It kills people. This will kill me."
"And you didn't tell me?" I'm out of my seat before I can register the shake of his head.
"I didn't expect to get symptoms until I was older. Usually, people don't get it until they're like, adults. I'm barely an adult myself. I thought it didn't matter."
"Joel, I'm your wife, and you didn't think to tell me you have a stupid, deadly disease?" I yell. "This must've been tearing you apart, Joel! Why... why?"
"Aspen—"
"No!" I turn on my heel and run out of the room.
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My eyes stare at the facts, but the words are just dancing on the page instead of making any sense. It's like the words want to go in, but the least important fact is the one that wins the wrestling match in my mind to be at the forefront: Joel lied. He knew he had this disease, but he didn't tell me. It's not even the fact that he could die from it. It's not the diseasethat makes me want to punch something; it's the lie. All I can see are the baby blue walls around me where they've tried to keep it neutral.
"Mrs Watkins?"
A smooth yet smoky voice comes from the door of the relative's room. Not recognising it, I turn in the seat and take him in. Looking not much older than me, he's got the blue scrubs of a nurse and blonde curly hair. I meet his amber eyes and give him a small smile of acknowledgement.
'Judge not, lest ye be judged.' Part of me can't fathom this man having much knowledge of this killer disease that's exploded into my life. But he will have qualified for a reason.
He sits beside me on the cheap blue fabric of the sofa and offers me a cup of tea. He smiles at me kindly, almost like he's offering a truce of some kind. Can he help mend the black hole between Joel and me by shedding some light on this? I nod in acceptance and notice he has dimples on his left cheek.
"Thank you. Please, call me Aspen," I say.
He puts the white mug on the table.
"I'm one of the specialist nurses from the Huntington's disease clinic. Or neurology, if you want to get technical. Nicholas Knight," he says. He holds his hand out to shake. I put the leaflet on my lap and take his hand. His skin is smooth as butter despite being a nurse, his grip is firm, and I can swear he lingers for a second too long.
"Thanks for the tea," I mutter and pick the leaflet back up.
"No worries. They asked for me and the doctor to come up for your husband, and you. I understood from Doctor Daniels that it was a big shock for you," Nicholas says. "The doctor is in with your husband now, by the way."
I nod in response and show him the leaflet. "This is about all I know. Never even heard of such a thing until the doctor said it. All I'm aware of is that Joel knew and didn't tell me—sorry, I'm rambling."
I glance at him when he gives me a slight chuckle. His dimples come out again.
"Ramble away, a shock like this will take a while to settle in. That's what the tea is for," he says, and we both laugh at the last part.
"British resolve, right? Tea will solve everything," I joke.
"Pretty much. My parents always make me a cup of tea when something goes wrong," he replies, and I notice something sad in his tone when he says it. He quickly recovers though, and the way his tone picks back up reminds me of an Olympic gymnast: you think they might fall at the end of the routine, but they just stand back up as if they never faltered.
"Huntington's is a genetic disease, so your husband would have inherited it. It's a fault on a specific gene. That faulty gene is the one that affects the nervous system. The symptoms usually don't start this early as they have with your husband, but they can. Once they start, they progress gradually as someone's life goes on. The disease can cause changes in someone's thinking, learning, movement and sometimes emotions."
It makes sense – the way he couldn't focus. But that seems so specific.
"He only had one symptom though," I mention. "Unless he was hiding more than he cares to admit." The last part comes out bitter like ash, despite me knowing I was being unfair to him before.
"With juvenile symptoms – which is people under twenty-one, epileptic fits can be a symptom. As well as the change in focus your husband said he had," Nicholas says. "There can also be mood changes, which you may not have even noticed, or passed off as normal."
I nod. "He said there's no cure."
"There isn't, unfortunately. But there are ways to learn to adapt, medication to slow the symptoms, so both you and your husband can live with the disease," Nicholas says. "But for now, why don't you drink your tea and take a breather?He's being looked after. This must be a shock."
I nod, letting my eyebrows raise as far as they'll go. "Just a little one, yeah."
Nicholas chuckles slightly. He certainly has the charisma a nurse needs. "Sorry, that was a slight exaggeration."
"No, no, it's not that. Sorry, I shouldn't have been sarcastic to a stranger. I just... it's meant to be our second wedding anniversary today. I only realised when I checked my phone. I... this is not the way you're meant to be spending your anniversary. Then I suppose we're not conventional anyway..." I let my voice trail off. He doesn't want to hear all about my problems, he's not even here for me.
"I need to go and introduce myself to your husband. Will you be all right?" he asks, not even registering my rambling.
That's what happens when you speak to people, Aspen, you push them away. Just like Joel. That's why he didn't tell you.
I sip the tea to shut my brain up. It tastes like it should be strong, just a dash of milk how I like it, but somehow it tastes bitter and ashy. It's full of lies and betrayal. I don't really know why he didn't tell me, but I have a rough idea.
"Of course. I'll drink my tea and try and make sense of this leaflet thing," I say.
He smiles at me. As he stands up, he puts a hand on my shoulder. It's full of hope and comfort in this cold, bland room. "I'll come back and see how you're doing afterwards."
When he walks out of the room and closes the door, I let go of the tears that were threatening to leave before he even entered.
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