2022 WATTYS SHORTLISTED || After being forced into a marriage by her devoutly religious parents, Aspen's husband is diagnosed with a life-limiting illness, and she must find her purpose as well as fight feelings for her husband's nurse. || Aspen Wat...
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Joel sits on the edge of the bed as the physiotherapist stands opposite him, trying to encourage him to use the Zimmer frame to stand up. It's like watching the stage at the beginning of a concert. You're waiting for the main act, and the roadies are setting up the stage. Every time someone comes on stage your heart starts hammering and your breath hitches because it might finally be time, but they put down a guitar instead. The disappointment swirls until you slump back in your seat in a huff.
He doesn't want to do it because he thinks he can't. I know he's too scared to by the way he refuses to commit to the exercise. Joel puts his hands on the frame and shuffles himself forward, but then he hesitates. No matter how many times the physio – Henry – or I try to encourage him, he just panics.
"The fact is this, Joel, and you won't like it," Henry says. "The less you're active now, the worse the symptoms will be. While it might feel like you can't do it, you can. You're young; you can beat this."
"Why bother? I'll get worse and worse and probably die before I'm thirty, so why not just give in to it now, huh?" Joel groans.
I move and stand right in front of the frame and crouch, so he has to look at me. "Hey, Joel?"
"What?" he snaps at me.
"Do you remember when you promised me a few weeks ago that we'd go away? You said we could go to like, Paris, Japan, or New Zealand?" I ask, and he nods reluctantly. "We can still do that, but only if you get up and start kicking this where it hurts."
I sniff quietly, willing the tears away. If I let them fall, he'll see my vulnerability and feed off it.
He groans. "We probably won't—"
I stand up and wipe a stray tear away. "Just think about the Hobbit holes we can visit."
"It better be worth it." He groans. He's not happy about any of this, and again, I'm wondering if this is the mood swings or just a Joel thing.
I remember reading the other day about mood swings and knowing this would happen. I wonder if this is just that, or whether this is just him in shock or reacting. I also remember reading that many people with Juvenile Huntington's Disease won't get diagnosed for years and years because the symptoms are so broad, like mood swings and epileptic seizures. It just gets passed off as something else entirely. I wonder for most people if that's better to not find out and be shocked when it gets diagnosed, or whether it's better to know what you're facing like Joel.
Is it better to know whether you have a shorter life so you're prepared, or is it better to have no idea you're going to die soon so you can live as normally as possible?
I can't imagine being in Joel's shoes. Watching him suffer, and struggle with this death sentence is like witnessing a car crash over and over; the impact, and the after-effects, do not get better. All I know is that this is like being the passenger in the car: I'm not getting the immediate impact, but I'm feeling the effect of Joel's diagnosis. If it's like that for me as the onlooker, how must it feel to be Joel?
