Chapter 8 #2
Neil shrugs. “I don’t know. Probably because of the shit going around in my head. I haven’t been sleeping well. Are you sure I can’t get you another drink?”
“No, I’m fine. Um…can I ask why you really invited me up here?”
Neil drops onto the sofa, rubbing at his face. He’s shaved in the shower, the stubble from earlier gone. “To…to tell you that you were right about my eyes.” He says it so quietly, I almost don’t catch all the words. “Except you know that anyway.”
Shoulders dropping, he stares at the floor between his feet.
“Can I ask what the problem with them is?”
“Yeah.” He blows out a breath. “I have something called retinitis pigmentosa.” His gaze finds mine. “Have you heard of it?”
We studied every area of medicine at med school, including that six-week ophthalmology placement.
Although healthcare would be much easier if medical conditions existed in silos, they don’t.
For example, an eczema patient might also have thyroid disease, which, although unrelated, affects the choice of eczema medication.
Psoriasis can be a mild or aggressive standalone condition, or part of a complex autoimmune disease also affecting the joints and kidneys.
A patient with skin cancer may also have diabetes.
And so on. Which is a longwinded way of saying that, as well as being a skin specialist, I know a little bit about a lot of other organ diseases too.
“It’s inherited.” I chew on my lip, casting my mind back to a heavy blue textbook. “Autosomal recessive, I think?”
“Yeah, that’s right, most cases are. Including mine.
So when I was diagnosed as a teen, at a fairly routine eye test for headaches and poor concentration at school, it came out of the blue.
My parents both carry the duff gene but are not affected themselves.
No one else in my family is.” He examines his fingernails.
“Back then, I didn’t really care, because aside from struggling to read in dim light, it didn’t much impact my life.
The dyslexia was a bigger problem. And…and when you’re fourteen, thirty-three seems like a lifetime away. ”
“But it impacts it now.”
“Yeah.” Neil rubs a hand across his jaw. By now, Alaric would be sitting next to him with an arm around his shoulder.
I’m not Alaric.
“It’s been creeping up on me for a couple of years but has got worse over the last six months or so. Bright lights dazzle me and, as you’ve probably picked up on, I’ve lost a significant chunk of peripheral vision.”
Neither of us speak for a minute or so. I could tell him how sorry I am, but he already knows that.
“If you knew it was a recessive gene, then you also know what having an RP diagnosis means, don’t you?” he says eventually.
I nod, my answer no doubt written across my face. Gradual, irreversible, total blindness. A steady erosion of the retinae, from the outer edges in, until all that’s left is a tunnel of light, then a keyhole, then a pinhole. And then… nothing.
“But you’re doing something about it, right?” I press. “Having whatever treatment there is, to slow it down? Optimising and prolonging what remaining eyesight you still have?”
“No.” Neil’s mouth sets in a grim line. “I’m not.”
“What? But I thought you were under the care of Moorfields.”
He seems startled. “What makes you think that?”
I feel up my sleeve for my beads. “Full confession. Your phone screen lit up with some random ad the night I came up here when you were drunk. I read the message and the one below before I’d even realised I was seeing them. The font is—”
“Big, yes, I know,” he interrupts sourly.
“I just saw the word Moorfields and then…then everything else about you fit together. I knew you weren’t drunk that time you fell off the stage. Things weren’t adding up. Sorry. I had absolutely no intention of prying. It was just there.”
Abruptly, Neil paces to the window, looking out into the darkness with his back to me. I twang my wristband hard. I should have stayed downstairs, Alaric and Gerald will have arrived by now. They’ll be laughing and dancing and having fun. They know not to ever put me on the spot like this.
“I ran out of my appointment.” Neil stares out of the window.
“The afternoon I got drunk. It was the first one I attended in years—I get invited for a check-up every year—but I couldn’t stand it.
After I went through all the tests, I panicked and left without having the consultation with the specialist about possible treatments.
” He laughs humourlessly. “What a fucking loser, right?”
“No, you’re not. Don’t call yourself that.”
“Why? It’s true.”
“It’s not. But…don’t you think that by not confronting the problem or trying to hide it, you’re only hurting yourself more? Stacking up even more problems? The specialists at the eye hospital can help you.”
“What’s the point?” Neil reels to face me, raising his voice, making me flinch. “Which part of ‘RP is incurable’ don’t you get?”
“I didn’t say RP was curable. I said the specialists might be able to help you.”
“How?” He stalks towards me, jaw clenched tight, dark eyes stormy.
“You want me to start walking around with a white stick so nice ladies stop to help me across the road? Should I wear a fat yellow lanyard with a big sign attached, saying watch out for the poor blind bugger? Download some chirpy little app that alerts me where the pavement ends?”
“No, but…” Sometimes patients need to rant.
They don’t always want immediate solutions; they simply need to get their fears off their chest. Nonetheless, with Neil bearing down on me, my heart races, my words stuck in my throat behind a wall of panic.
Ezra should be here talking Neil down, not me. He’d take advice from Ezra.
“Listen. It’s not your fault you’ve got RP, Neil.
You know this. It’s just horribly bad luck, in the way that being born with severe spina bifida or…
or only one arm or a heart defect is bad luck.
” Or developing crippling anxiety. “None of those things are weaknesses. They don’t mean you’re not capable. Having RP simply means—“
“Means what?” Neil lets rip a bitter, barking laugh. “That I’m disabled? Handicapped? Someone to pity?”
“No! Of course not. It might mean you can no longer do some of the things you used to, but I don’t pity you, Neil. Why would I, with everything you’ve done and achieved already in your life?”
“Achieved,” he parrots. “Note the correct use of the past tense, ‘cos I sure as hell shan’t achieve much more. Ezra doesn’t want a useless blind business partner.
And Pretty Vacant doesn’t need a blind bandmate who can’t even find the fucking stage.
” With a howl of frustration, Neil bangs his fist against one of his plain cream walls.
“And what about all the other things I want to do? We had plans for this place, Luke! I had plans for me.”
“And you can still have them. A visual impairment isn’t the end of that.
Needing to ask for help from professionals and friends and family just signals that you’re human, doesn’t it?
That’s all. Like the rest of us.” I grasp my wristband hard until the beads dig into my flesh.
“Frankly, the only person doing any pitying around here right now is you. And it’s fucking unhelpful. ”
A long pause follows, unsurprisingly, because I’ve gone way, way too far.
Quickly rising to my feet, I shoulder on my coat.
If I don’t escape right now, no amount of wristband twanging and box breathing will save me from myself.
When Neil’s recovered from the shock, he’s going to unleash a verbal diatribe all of his own, and who can blame him?
“Look,” I begin. “I shouldn’t have said all that. Sorry, I think I need to go.”
I get as far as the door.
“What? You’re going to throw all that at me and then fuck off?”
“I have to. Sorry. I can’t do this. Alaric’s downstairs, maybe you should offload onto him. He’s—“
“For fuck’s sake.” Neil flings himself onto the sofa, burying his face in his hands. He makes a sound horribly like a sob. “Don’t you get it? It’s not about the bloody asking for help. It’s about what happens after, isn’t it? What happens after I admit to everyone I need it.”
I pause, one hand on the door handle.
“What do you think will happen?”
“People will start treating me differently, won’t they? Start being fucking nice, reminding me all day, every day, that I’m not who I was. That my eyes are only going to get worse.”
“Yes, possibly. But…”
I remember the first time I came back to work after a period of ‘extended leave’, which could have been construed as a pleasant holiday away but clumps missing from my hair and my pallor suggested otherwise.
That first step back into the hospital had been hellish.
Whilst it’s not easy now, at least I’m not wasting energy covering up who I am.
Except where this man is concerned. He’s not seen me without my hood and long sleeves. Even a guy like me, who fell as far as a person can go, keeps a shard of vanity hidden away. And Neil’s way prouder than I’ll ever be.
“But Neil, by hiding and prolonging that moment you’re making life so hard for yourself. Why would you do that?”
Men like Neil don’t fall apart easily. But it’s there now in the clenching of his jaw, the shaking of his shoulders.
He’s blinking too hard, too fast. When he manages to speak, it comes out in a whisper.
“I think I do it because…because it lets me pretend I’ve still got time. I’m not ready for that role.”
I cross the floor to stand in front of him.
I don’t lean down to hug him; spontaneous physical affection doesn’t come easily to me, and I don’t think to him either.
Instead, I lay my hand on his bare arm. “You do have time. Not to fix it—that’s never going to happen—but you need to stop wasting that precious time and your energies pretending you’re not scared.
You are. I would be too, but there’s no shame in that. ”
He doesn’t snatch his arm away, but he doesn’t lean into it either. “I don’t want to be someone people feel sorry for, Luke.”
“Then let people help you,” I plead, “so that you cope well.”
“I don’t know how to do that.”
Neil’s words hang there as I hover uselessly, watching him try to hold himself together. Wanting to help, wanting to step in, to say something—anything—but the right words feel too small and too scary, all at the same time. I tug at my hair.
“You could start with me.” My voice doesn’t shake, but pretty much everything else inside me does. “If you like.”