by Jenni Ogden
TWENTY - ONE
Decision time. The Huntington’s Disease Association had offered me a two-year research grant that would pay a small salary while I analyzed and wrote up some of the data gathered by my group over the last few years. Research labs always seemed to accumulate masses of data that never got written up, and my lab hadn’t been an exception. Once the main articles were published and the main questions addressed, another project would take over, often leaving potential riches lying in filing cabinets or on computers. It seemed unethical to discard it—all that time given to our projects by Huntington’s patients and their families, the countless hours of work by my research assistants, and the thousands of dollars supplied by my previous granting body. It’s probably a fantasy—given that I’m no longer on that cutting edge—but perhaps I could find something useful, something new, that might help families like Tom’s.
These days, when I thought about it at all, I wondered if research on how to cope with having Huntington’s mightn’t be more useful than working out ever-finer details about the genetics and pathology of the disease. We knew how to stop it—do what Tom’s sister had done and make sure no more babies were born who carried the gene. It might be more constructive to pursue research on how best to persuade potential carriers with strong religious or moral beliefs to consider contraception, abortion, IVF, or genetic testing for the sake of their descendants.
Or perhaps I should become an activist, fighting to legalize euthanasia for patients like Tom’s father. Morrie had told me that a few years ago, when he realized he could no longer teach, he asked Tom if he would help him commit suicide when the time came—when Morrie was no longer able to enjoy anything about his life. I didn’t know, when Morrie told me, that Tom was his cousin, so I didn’t realize what it must have meant to Tom to say yes. He did, of course, say yes.
I read the grant letter again. Coward that I am, I had been hoping that none of my many research grant applications would be successful. Yet here it was, the perfect solution. I could return to my nice apartment in Boston and become a recluse once more, with no need to connect with a single patient, a single family, or even any research assistants. Heaven, surely?
After a week of private agony I wrote an acceptance letter and put it on the table, ready for Jack’s boat in the weekend. Then I almost ran down to the wharf where Tom and Bill were waiting for me, the third member of the turtle rodeo team. As we bounced over the choppy swell, I braced myself at the bow of the tinnie, the salt and wind and sun whipping my hair into stiff peaks and filling me up.
The next morning I looked at the letter as I ate my muesli. Even the address on the envelope gave me the shits. I picked it up and with my strong, turtle-lassoing hands, ripped it in half. It was the last thing I wanted.
THE SAND FELT DECADENTLY WARM AGAINST MY SKIN AS I lay, stomach down, on the sand of Shark Bay. It was lovely on the island in late July—by midday, hot but not too hot, and at night, pleasantly cool. Like the air, the sea never really got cold, but for we permanent residents—how good that sounded—by July a wetsuit was definitely required for swims longer than thirty minutes. By October it would be bathwater warm again.
I couldn’t—wouldn’t—think about that; how could I be leaving in less than three months? I wriggled farther into the sand, and reached around my back to release the strap of my bikini top. Perhaps I should take it off? Who would have thought I’d ever have the courage to wear a bikini? I’d never even worn one when I was young. This one, almost skimpy and sensual black, had beckoned to me from a shop window when I was in Brisbane with Pat. Naturally, she’d encouraged me.
She’d be home soon, her chemo completed. I closed my eyes and visualized her as she used to be—her healthy brown body, still mostly firm even at sixty-six, looking amazing in her turquoise bikini. Would she have the courage to wear it now?
That morning I had been up early walking the beach, and out beyond the reef had spotted the spout of a humpback whale. Then through my binoculars I’d seen it again, and felt the joy bubbling up as her great hump appeared followed by a smaller one—her baby. Most days I saw them now, often with calves. Our sea, so warm compared with their icy Antarctic feeding grounds, had called them all this way to give birth. Mothers and babies—Kirsty and Hamish, Mother Humpback and Junior, shearwaters and noddy terns and their cute chicks, Eve and her hundreds of turtle hatchings. It was awe-inspiring what mothers would do for their offspring. I turned over, my bikini top discarded. I stroked my warm, flat stomach, and a tear slid down the side of my nose and landed in my ear. My breasts tingled and I could almost feel them swelling as my nipples reached for the sun.
SINCE HAMISH LEFT, TOM HAD, LITTLE BY LITTLE, BEEN opening up about his father. He was a gentle man, a boat builder by trade but never happier than when on a wild beach or a lonely river, fishing.
“He sounds a lot like you,” I said.
“I suppose so, before the Huntington’s at least.”
“And after?” I ventured when the silence had lengthened into minutes.
“I hope not; I tell myself that forewarned is forearmed.” He looked at me. “Do you know any research about the psychiatric symptoms of Huntington’s—do they pass from father to son too?”
“I don’t know, I’m sorry.” My gut squirmed with guilt; I couldn’t even help him with this.
“You don’t have to be sorry. At least you’re honest.”
“What happened?” I wanted to take his hand, but I didn’t.
“He changed gradually, I think, but I didn’t notice. I was too tied up in my selfish teenage dramas.”
I resisted asking him, but I wanted to know him as a teenager. Later, perhaps.
“One day, when we were eating dinner, Dad exploded: threw his full plate at Mum, screaming and shouting obscenities. We were in shock. He blundered about the room and Mum yelled at us to get out. I stood my ground but I was scared shitless. Hilary dived under the table, and Mum was trying to calm him down. He started to hit her and I managed to pull him off. I was sixteen, and already nearly as tall as him. After that, he became worse and worse. Sometimes he’d go for days without any problems and then he’d fly into a rage. How Mum stood it, I don’t know. Finally, one night, after he turned on me, she called in the psychiatric crisis team, and he spent a few nights in the psychiatric ward. At first he was diagnosed as paranoid schizophrenic, but the drugs didn’t help. It wasn’t until he started the movements that it finally clicked that he had Huntington’s.”
Tom’s expression almost made me feel sorry for his father’s doctor.
“Grandma’s still going strong and is as sane as you, so he must have inherited it from my grandfather.” Tom sighed. “Trouble was, he died when he was thirty, before he had any symptoms.”
How often I’d listened to stories like this from my research assistants when they returned from a particularly harrowing family meeting. As soon as I began to curl up inside I would shut off my emotions and listen to the words spilling from their mouths, telling myself, I suppose, that that was the proper, objective way for me to behave. But this was Tom, and I could smell his fear—not of his father but of his own future.
MY T-SHIRT AND SHEETS WERE SATURATED WHEN I WOKE, my heart pounding as if I had run a marathon. My pleasant dreams vanish within minutes of waking, however hard I will them to stay. The ones I want to forget refuse to go. In the dream there was Morrie, and then he became Tom, his face contorted and screaming as he jerked in his bed, trying to rip his arms and legs from the straps that held him down. I was terrified, and desperate to escape before he got loose and grabbed me.
Every day since I found out that Tom might end up with Huntington’s, I had insisted—to him, but more importantly to me—that it made no difference to how I felt about him. When he told me he hadn’t been tested, part of me was relieved. But how long could I keep believing he couldn’t possibly have it, and that one day a light would come on in his dumb head and he’d see that we were destined to spend the rest of ou
r lives together?
So there I was, sitting at my computer at three in the morning, hoping that writing would be easier than dreaming and would somehow magically help me face the feelings creeping from the darkest corners of my psyche.
I’m good at denial. After Dad drowned, for months I refused to believe it, imagining bizarre scenarios where he returned after being washed up on a desert island, or after being rescued by an African freighter and taken to shore where a primitive tribe took care of him until his memory returned. I thought I had stopped believing in fairy tales thirty-five years ago.
Is this what I’ve been doing with Tom? Kidding myself that even if he does get Huntington’s I will want nothing more than to stay with him and look after him until he finally chokes to death on his own spit? I, who for twenty-five years have had every opportunity to get to know and feel comfortable around Huntington’s patients but have failed completely? Those few weeks with Morrie played right into my fantasies, but he is unusually free—so far—from cognitive and psychiatric symptoms. The physical contortions used to be hard enough for me to deal with, and at least Morrie has helped me overcome that fear, but as I know from my own research, it is those other mind-altering, soul-shattering changes that really challenge families, and especially partners. Tom knows me better than I know myself. Perhaps I don’t have it in me to love anyone unconditionally, not even Tom.
In the morning light, I read what I’d written and felt sick. Facing the truth was something I had had little practice at. It is one of the fallacies harnessed to introversion, that the inward-looking types are the ones who know themselves best. But without others to care about, and who care for you, there seems little need for honest feelings.
I would tell Tom, somehow, that he was probably right about us—that we would never work long-term. And then I’d stop worrying about it and enjoy being here until it was time for me to leave. But I definitely wouldn’t accept that grant. I had learned that much—I did not want to return to lab research.
Pat came home the other day. Her chemo had knocked her about and she was reed thin, her skin dry and pasty. But she was happy, so happy that the chemo was over, and was positive that she was cured. Her first checkup would not be until after I left, and she told me very firmly that we were not going to talk about cancer at all from now on. I wanted so much to help her find herself again, as she helped me find myself when I first arrived. We did talk a lot, and I was humbled by her willingness to look at how she had changed and to embrace it. She still found the physical changes confronting, but said the psychological challenges have so enriched her life that her brush with mortality had almost been worth it.
“I thought I couldn’t love my children and grandchildren any more, but how wrong I was,” she told me. “Before, I loved spending time with them, but, for my own sanity, not too much time. Now the time I spend with them is even more precious, and I leave them for their sanity, not for mine.” Her laughter was genuine, as always, but I didn’t doubt the truth of her comment. How wise she was, knowing when to let go, and having the strength and generosity to put the needs of the people she loved above her own.
I needed to have that to hang on to as I read the letter that Jack had brought. Fran had made her decision: she was going to stay with the Professor. She thanked me for my understanding letter—said that it had helped her. Her other friends had all told her to kick him out, and she had been so confused she almost did. Then my letter came and my “sane and sensible logic” gave her the courage to stick with him. I felt like such a fraud. How could I have been so … so … dishonest?
I WAS PLAYING HOSTESS. IT WAS TOM’S BIRTHDAY, AND I was trying not to dwell on his age, even though forty sounded a damn sight better than thirty-nine to me. We’d been working hard to enjoy each day as it came: no pressure, no dwelling on the future. Even when I wasn’t with Tom or Pat, I was filling every moment with something—reading, snorkeling, helping Tom with data analysis, whale watching, even writing bits and pieces about my life as a scientist for my unlikely book. Occasionally I allowed myself to think about what I might do, career-wise, when I returned to Boston. Perhaps I could retrain as a real doctor so I could help real patients? But tonight was for Tom, and I had been cooking up a storm for him and the rest of my island family. It was meant to be a secret, but I knew he knew that something was up when he told me he was going off sailing for four days, including the day of his birthday. As I stuttered out some reason why that wasn’t a good idea, I caught the twinkle in his eyes.
Basil arrived almost an hour early, when I was panicking about all the last-minute things I had to do, but everything got put on hold when he handed me a slip of paper with a phone number on it and I saw that it began with 44. “Your stepfather just Skyped,” he said.
“Pardon? You mean Magnus? He’s my mother’s husband.”
“Oh, well, he said he was your stepfather. It’s your mother; she’s not well.”
“No. What’s the matter with her?” I looked at the half-prepared salad on the bench, and pushed back my irritation.
“He didn’t say and I didn’t like to ask. He sounded upset, though, so I said I’d get you straight away.”
“It must be bad for him to call. What am I going to do about all this?” I waved my hand at the chaos on the bench and table, then sat down in the nearest chair, suddenly dizzy.
“I’ll stay here and finish the salad at least. Don’t worry, if it’s not all done by the time everyone gets here, we’ll all pitch in. You get off and talk to him. Turn my computer off when you’ve finished. It’s probably not too serious or he would have said.” Basil patted me awkwardly on the shoulder, and I took a few deep breaths and stood up.
When I got back, Pat and Violet had done everything and the table looked wonderful, set for six—Violet and Bill, Pat and Basil, and Tom and me. Bill was reading the two kids a story before they hopefully went to sleep in my bunk beds. Basil was sitting on the deck with a beer, and Tom had yet to arrive.
“All okay?” Basil asked, and I nodded, not quite ready to speak. He handed me a beer as Violet and Pat came outside, motherly concern on their faces. I drank half the beer and felt better.
“Mum’s had a heart attack, but it’s not too bad apparently. She’s still in hospital and the cardiac surgeons think she needs a double bypass.”
“Oh, Anna, that’s worrying,” said Violet.
“She was always so fit. She’s never smoked, always had a healthy diet. Just unlucky, poor old thing,” I said, drinking the rest of my beer.
“How is your stepfather taking it?” asked Pat.
“Upset, I suppose. It was hard to tell because of his accent. There was no video link so I couldn’t see his face. Apparently he was Skyping from a computer in the hospital.”
“Poor man,” said Pat.
“He wants me to go there. He thinks Mum wants me there.”
“Of course she does. You’re her only child.”
I went inside so I didn’t have to look at Pat. “We were never very close. Double bypasses aren’t that risky these days,” I said to the empty room.
Behind me I could feel the silence.
“Let’s get on with the dinner party and I’ll worry about it in the morning. I can’t do anything now.” The plates clattered as I pulled them out of the cupboard. “Tom will be here any minute, and I don’t want him to know. It would only spoil it for him.”
I GROANED AND CLOSED MY EYES QUICKLY AGAINST THE blinding sun. My head was hammering and I pulled the sheet up over it.
“She lives. Here Anna, drink some water. I’ll get you some Panadol.”
The sheet was pulled away from my face and I peered at Pat through the smallest slit in my lids I could get away with. “I don’t think I can sit up.” I groaned again as the demons stamped up and down on my poor brain. Pat was lifting my head and I felt the glass on my parched lips. I gulped and a shot of cold water exploded into my mouth and shot out again as I spluttered and coughed.
“Oops,
try again,” Pat said, her hand firmly under my head, which wanted desperately to collapse back on the pillow.
“Here, I’ll hold her up higher,” said Tom’s voice. I felt his arms around my back, lifting me into a sitting position. I couldn’t see him; he was behind me, and there was no way I could turn my head. I needed to hold it rigid; even the slightest movement resulted in a burning sword thrust. This time I managed to get some water down my poor throat. I felt the rest of it on my chest, and in sudden horror I looked down, hot swords forgotten as my nakedness assaulted me. I jerked the sheet to my chin, and looked at Pat, Tom now beside her in full view. “Where are my clothes?” I snarled.
“Soaking in a bucket as far away from the cabin as we could get them,” said Tom, his grin very, very wide.
“Shit. I was drunk.” I shrank back down in the bunk, my entire body blazing. “Who undressed me?”
“It took both of us. You were like a rag doll,” Tom said, still grinning. “A very smelly one.”
“Sorry, Anna. We gave up trying to get a T-shirt over your head. It seemed better to cover you up and let you sleep.” Pat’s tone sounded much more sympathetic than Tom’s.
I sneaked a look under the sheet and did the whole body blush again. I was totally naked, totally.
“God, I’m sorry. I can’t believe I got that drunk. Whatever can Violet and everyone have thought?”
“They left before you were too bad, so don’t fret,” said Pat.
“Yep, by the time you were unambiguously legless, Pat and I were the only witnesses,” Tom smirked.
I groaned. “What on earth was I drinking? Perhaps it was food poisoning.”
“Beer, wine, and whisky poisoning, more likely.”
I groaned again. “I’ve never in my entire life been so drunk that I spewed.”
“Another first for your Turtle Island memoir then,” said Tom.
