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My eyebrows rise. “Multiple Sclerosis?”
“Yes. PPMS—primary progressive, the kind that isn’t relapsing remitting. It means it just gradually gets worse.”
“I’m so sorry.”
She gives a sad smile. “Thank you. She was first diagnosed when she was thirty-nine, the year after my father died, when I was fourteen. Some doctors think a shock like that can bring it on. How much do you know about it?”
“I know the immune system attacks the protective sheath that covers nerve fibers.”
“That’s right. It causes communication problems between the brain and the rest of the body. She suffers from muscle weakness, especially on the right side, and she’s confined to a wheelchair. She has problems controlling her bowels and bladder, and blurry vision and slurred speech sometimes. Extreme fatigue also means that even activities like brushing her hair can exhaust her. But we’ve established a routine now that gives her as much independence around the house as we can, and we manage the disease well. She occasionally suffers from low moods, but in general she stays positive, mainly for me and Charlie, I think.”
“Shit, I’m so sorry.”
“She’s an amazing woman, and does everything she can to be as self-sufficient as possible. But the truth is that she needs twenty-four-hour care.”
We fall quiet. She watches me as I process that information.
“So you’ve looked after her since you were young?” I ask.
She nods. “Full time, since I left school at sixteen. Obviously, I couldn’t go to university. And I haven’t been able to get a full-time job.”
“You only have one sibling?”
“Yes. Charlie is twenty now, in her second year at uni. Mum and I saved up to make sure she could go. Charlie cried when we told her we were sending her to Vic. She said she’d go only on the proviso that she comes home when she finishes her degree to share the care with me. I agreed, because it was the only way to get her to go.”
“And you don’t have any other help?”
“My aunt, Mum’s sister, June, comes over when she can. She’s a nurse, and she has four kids, so she doesn’t get much free time, and when she is off I try not to call on her as of course she wants to be with her family. But she’s very sweet, and insists on giving me a day or two off a month.”
A day or two a month… I’ve spoken to full-time carers at the hospital when I’ve been doing research there, and I know what pressure it puts on a person to have that kind of responsibility.
“You can’t pay for someone to come in?” I ask.
“I get a Supported Living Payment, but I’d rather look after her myself and use it to buy things I need to care for her. Money’s very tight. Coming here and staying in this luxury room was an extravagance I don’t usually have.” She looks around and laughs.
I find it difficult to echo her humor, though. The carers I’ve met have been much older, and often partners of the person who needs looking after. She’s so young, and she’s already missed out on so much.
“So,” I ask, “Charlie’s got, what, another year, or two years at uni?”
“One more. She’s doing a law degree. She’s hoping to do something part time when she graduates, so she can help share Mum’s care. It means I might be able to get a part-time job. But if I can persuade Charlie to have a proper life, with a husband and kids, I will. I want her to have a normal life. I’ve come to terms with the fact that my life will never be normal in that way. My mum will always come first.” She gives me a direct look. It’s a warning. She’s saying she would never abandon her mother and run away with me.
“I understand. But if a guy were to come around, because he liked you and wanted to be friends…”
“I don’t live around the corner, Kip. I live in Gisborne. I’m driving home tomorrow.”
I feel as if she’s thrown a bucket of cold water over me. Gisborne is on the east coast of New Zealand, the first place in the world to see the sun each day. It’s a good seven-hour drive, and probably more like nine hours because the more direct route along State Highway Two has road closures. She’s going to have to drive all the way up to Lake Taupo before heading east. Jesus. Flying would take only an hour, but clearly that’s out of the question money-wise.
I have money, and a plane, and could offer to fly her back and forth. But I already know she wouldn’t accept it. And anyway, it wouldn’t solve the issue of looking after her mum. She wouldn’t want to hire a carer, even if she could afford it.
“I think you’ve just broken my heart,” I tell her.
“Aw.” She pushes me. “You’ll forget all about me tomorrow. Soon you’ll just remember me as the ditzy blonde who made you spend the night in a room the size of a postage stamp.”
She snuggles up to me and sighs, and I wrap my arms around her. I wasn’t joking. I feel genuinely gutted. There must be some way I can see her again. “You’ll be bringing Charlie back here at the beginning of semester one, won’t you? Can I see you then?”
“Don’t make me promises like that, Kip. It’ll hurt so much more when I get that message saying you’ve met someone else.”
I don’t reply, because she’s convinced herself we could never have anything of substance, and she won’t believe anything I say. It stings a little. I’d be prepared to travel, and to find a way for us to be together, but there’s no point if she’s going to say no to everything I suggest, and I know she will. I’ve already been with one girl who couldn’t be bothered to fight for me. I don’t think I can go through it again.
