So how the hell do I tell someone who views me as the other half of our well-oiled machine that I can't see well enough to run the bar below whilst he schmoozes above?
“Am I mistaken, or was that you and Luke soft launching a little something last Sunday?”
He smiles slyly as I make a stab at scrolling through the interior designer’s ideas.
“Launching what? I took him to the cinema. Once. Then we joined you all for Sunday lunch.” Ez is my best mate and business partner, but he's not party to every aspect of my life.
“It’s just that Luke’s not your usual type.” His pen pauses on the paper. “Can I take credit for bringing you together? Was it love at first sight when he checked how dilated your pupils were and asked you to name the current prime minister?”
“All of that,” I answer drily. “And it’s nonya.”
Ez’s pen pauses again. “What?”
“Nonya business.”
Ezra snorts. “Does he know he’s dating a man-child?”
“Who said anything about dating?” My rash whisperer is a private soul. We’ll hard launch when he’s ready and comfortable with the attention. Until then I’ll be suitably vague. “And so what if we are? Maybe I’m growing up at last. Everyone else has, even Alaric. But it was one date, Ez. Let’s not book the church yet.”
“One date that lasted until Sunday lunch the following day,” he corrects. “That’s the longest relationship you’ve had with someone, isn’t it? I’d say the organist needs to start warming up his pipes.”
“I’ll warm up your fucking pipes if you don’t shut the fuck up. Talk me through your drawings. But talk slowly and employ crayons. Man-child, remember?”
He does, so I nod again, tighter, and fake my enthusiasm a little longer. I let him sell me ideas. I even come up with a few of my own, though God knows how I’ll execute them. And we finish up with firm plans to meet with the architect, the health and safety people, to apply for a bank loan, to bring this venture closer to reality. And me closer to facing the truth.
As I creep into the back of a soulless function room attached to Maida Vale Library, my bad day continues apace. I’m attending my first ever Fighting Blindness meeting. At this rate, it will be my last.
“Hi, Neil, right? Good to meet you. I’m Derek, one of Moorfield’s Eye Clinic Liaison Officers. Take a seat and we can get started. You’re the last to arrive. Traffic bad?”
Nope, just suffered a mini panic attack two streets away after tripping down a kerb and almost face-planting into thepath of a double decker.“Yeah. Shocking. Hope I haven’t held everyone up.”
Derek’s handshake is warm, moist, and overenthusiastic. “Well, you’re here now and that’s the main thing. So pleased we have a full house today!”
Derek is the kind of person who, given the slightest provocation, looks as if he might burst into song. His arms move like exclamation points when he talks. I hate to make snap judgements, but he’s not my cup of tea. Perched on hard orange chairs alongside me, ten or so other attendees with varying degrees of visual impairment appear to disagree, seeing as they’re lapping up his every word. Aside from Derek, I’m the youngest person by more than a decade.
My stubbed toe throbs. My grazed palms smart.Visually impaired.Blind.Partially sighted. Every time I hear, see, or say those words, I feel sick to my stomach—unless I’m in conversation with Luke. Somehow, they don’t have quite the same visceral effect on me. I can even sensibly put them together in coherent sentences. How come when I’m with him I can keep my condition in perspective? Last week, watching us together in the reflection of his kitchen window, everything seemed doable. Even sitting through this meeting.
Derek claps his hands, and the room falls silent. “I usually explain my role at Moorfields with a short history lesson.” He gives an apologetic fake laugh. “Don’t worry, there won’t be a quiz at the end.”
I have a feeling I won’t be within a mile of this place to find out.
“Not so many years ago, care for people losing their sight was traditionally focused on providing medical and surgical treatment for their eye conditions. And we still absolutely focus on that, you’ll be pleased to hear.” He gives another grating laugh. His teeth are unnaturally white. “But since us liaisonofficers joined the team, Moorfields care no longer ends when you walk out of the hospital, taking your diagnosis with you.”
Shaking his head, he waggles his finger from side to side. “No, no, no, because at Moorfields we recognise that our patients need more than medicines and surgery and vision correctors. And that’s where I step in. Think of me as the jam in the sandwich between you losing your sight and facing that uncertain future alone. Liaison officers are here for practical and emotional support. We offer therapeutic psychological intervention and practical advice on living with sight loss, right through to help completing paperwork and accessing community support services.” He beams at his audience, making a scissoring motion with his fingers. “Red tape? I’m here to slice through it.”
Behind him, an oversized whiteboard bursts into life. “Meet Alice.” An older couple, both wearing thick spectacles, appear on the screen. “And her husband, Mike. Over the next few minutes, she’s going to share her retinitis pigmentosa journey with you. Feel free to move to where you can best see the screen. Don’t worry if you can’t—Alice’s words and thoughts are what matters.”
If positivity had a name, it would be Alice. As her RPjourneyunfolds, from the shock of diagnosis thirty years earlier, through several complex operations, to her weekly ballroom dancing classes and finishing with her recent climb up Kilimanjaro, I feel nauseated. Alice’s glass isn’t half full—it’s fucking overflowing. As if RP was the best thing that ever happened to her.
It’s not,I want to scream.It’s derailed everything I was building, everything I am.
“And who knows,” she declares, beaming as she cuddles into cuddly Mike. If the sound was muted, I’d think I was watching an advert for a retirement village. “You will feel right now, as your eyesight changes, several doors might be closing on you.But, even though it might not seem that way today, I promise you several others are just opening. I can feel it. Who knows? One day, it might be you up here telling your story. You, providing the inspiration for Moorfields’ patients of the future.” She stares straight at the camera—not that, from the sound of things, she has much sight left to stare with.
God, I’m an insensitive, nasty little shit.
“Some days will be tougher than others,” Alice observes. “You will have setbacks. You will be clumsy; you will fall over. You will discover train stations, airports, department stores, and pubs are not designed with you and your reduced vision in mind. But, even on the darkest days, hold onto optimism, hold onto hope.” She tinkles a laugh. “Hold onto someone’s arm! As Mikey always reminds me, believe and trust in a life beyond the now. And it will come.”
A life beyond the now?
