Once all the medical staff and visitors had left my bedside and I was lying there alone staring at the ceiling, all I could think about was Jack. I kept thinking of my relationship with my father, wondering how I would ever be able to tell Jack that he was about to become what I had always been: the child of a parent with a disability.
Shortly after I was discharged from the hospital I started receiving large parcels in the mail, pharmaceutical brochures written in sixteen-point type packaged with pens and DVDs. They depicted people ‘just like me’ peeling vegetables or packing their bag for a family holiday. Living their lives so fully with MS. At the cost of $2500 a month for a prescription, no small effort went into advertising and marketing these drugs.
I was suddenly being guided through life by a pharmaceutical copywriter. But my life was not peeling vegetables or going on family holidays with a container to dispose of medical sharps and a letter from my doctor explaining all the syringes in my hand luggage. I was meant to have a big, skidding-around-corners-and-grabbing-it-in-fistfuls kind of life. I was devastated to be contained by this. I had watched my father in that chair and decided from an early age to do all the dancing and living that he could not. I didn’t want to sit down; I wanted to keep on with an outrageous adventure big enough for the both of us.
The neurologist’s small waiting room had couches at either end and a row of chairs under the window. Whenever I went back for check-ups I’d take one look around that room – the bodies slumped over, people dozing, the wheelchairs, the chatting – and a fury came over me like a bleak storm.
Rather than join them, even in waiting, I chose to stand outside in the corridor until my name was called. I didn’t want to be associated with those people in any way, certainly not by the one thing we all had in common.
A petite social worker sat in with the MS specialist as he delivered the final, no-doubt-about-it diagnosis. She sipped coffee from a Starbucks cup about the height of her face while trying to look sincere.
‘It’s not so bad,’ the specialist said, pushing the Kleenex box across the table.
I only had one question. ‘Will it make me stupid?’
I’d seen the MRI scans of my head with small white masses indicating where the disease had lodged itself. I envisioned my brain becoming like a sea sponge, holes eating away at my memory, my capacity for language, my intelligence.
‘Probably not,’ he said. ‘But there are no promises with MS.’
No holding back the truth.
At least with polio, my father never had to worry about becoming an idiot. He was often the smartest person in the room. His mind was perfectly nimble and that’s what saved him. That and his lust for life.
What hope did I have? As far as anyone could tell me, I could have a deadened body and a deadened mind. Worse still, while my father’s sexual function was spared, the same would not be true for me. Once MS got me fully in its grip, chances were I’d be numb all over.
I am my father’s daughter, yet all I could think was ‘Why me?’ I wanted to scream, ‘This is not fair!’ Not so much because it happened to me, my adult self, but because it happened to me, my father’s child. It wasn’t just that I got sick, it was that I got sick after he’d already suffered so much. I’d suffered so much.
The neurologist scrawled the name of a psychiatrist on a pad and said my feelings were normal – that lots of people had trouble adjusting to a diagnosis like this. I realised then that the doctor’s desk was as big and as deep as it was in order to keep distance between himself and people like me. I wanted to reach across the table to grab him by his stupid pink shirt, or by his even more ridiculous bow tie, and scream in his face that this wasn’t about adjusting.
I wanted to get up close to his detached coolness and say through clenched teeth that I didn’t need a shrink, I needed a loaded gun.
Instead, I sat politely in silence like a good middle-class woman. Fury boiled inside me. He stood up to reach across the desk and shake my hand, saying, ‘I’ll see you in two months.’ I was dismissed.
The social worker opened the door for us. As we walked out into the hallway, a young woman walking with forearm crutches came lurching towards us. ‘Fucking great,’ I said audibly at the sight of her propelling herself along by a series of massive jerks and lunges. The social worker corralled me into her office, where I sat in the far corner with my arms and legs folded like twined ropes.
‘You might want to consider a support group,’ she said. ‘Most people find them very useful and a great way to share feelings and experiences. It’s important not to isolate yourself. Studies show that people with support do better.’
As a child, I had known this to be true. I had sought out people like Amanda and Uncle George’s family to support and look after me. Yet to her, I said, ‘I would rather shoot myself in the face.’
I wasn’t a joiner at the best of times, but joining in with a group of strangers, united by nothing more than our disease, was the last thing I wanted. I didn’t believe in the power of sharing. None of them would want to hear what I thought about having MS, anyway. I wouldn’t inflict myself upon them. Support groups were all about coming to acceptance, going through a process and arriving at some state of peace. I didn’t want that; I wanted to throw a hand grenade at the world.
Had the social worker heard my internal commentary, she would have underlined the notes I knew she was making about me. ‘Not dealing with it very well.’ That was right. I wasn’t at my best by a long shot.
How could my father have been so accepting, so at peace with his terrible fate? I remembered all the times I’d asked him, ‘Weren’t you mad? Didn’t you get angry?’ I never truly believed his denials. I know now he wasn’t pretending or putting on a good face. Acceptance is not something you can fake. Anger can’t be hidden. It seeps out of your pores like a toxic fume. I did pretty well at hiding the truth from my friends and colleagues, but for the people treating me I maintained no such charade. They got the full extent of my black and stinking fury.
Thirty-eight
About a year after my diagnosis, in 2010, Philip invited me to join him for weekends at his country home. For nearly every weekend over two summers I arrived Friday evening on the train with my little rolling suitcase, and his wonderful driver Pete, or Pete’s son Reid, picked me up from the station and took me to the house, where a glass of wine and dinner were waiting.
I didn’t cook when I was there. Philip enabled me to rest, and encouraged me to swim laps in his heated pool to keep up my strength. While he spent most of each day working in his studio, I had the run of the house. I used his laundry to do my washing, which I then draped over the bushes outside his kitchen door and on a small drying rack I set in the sun at the side of the house to keep it from view. I didn’t like using the dryer for environmental reasons, but it also reminded me of home to smell sheets and clothes that had dried in the sunshine. Philip joked that I was turning his home into a trailer park but never insisted I use the dryer.
Philip looked after me. I didn’t have to do anything when we were together. He planned where we’d eat and made the reservations, and when we were in the city, if he noticed I was tired, he ordered me a car service to take me home. If we stayed in to watch a ball game, he ordered and paid for our take-out. When my insurance no longer covered my physical therapy sessions, he sent me a cheque in the mail unannounced with a handwritten note that read, ‘MERRY PHYSICAL THERAPY!’
For once in my life I needed someone else to take charge and he did it graciously, without making me feel coddled, disempowered or that I owed him anything in return.
Most of all, Philip made me laugh. It didn’t matter how many times he told me a joke, I laughed as though it was the first time I’d ever heard it. He said I was like a goldfish who, by the time it had swum a lap round its small bowl of water, had forgotten what it had just seen and believed it to be all new again.
One day we pulled into the car park of the Stop & Shop supermarket and
he started pronouncing it as ‘Stop ’n’ Shop’. Then he went on a tirade of riffs on all the novels that could be abbreviated that way. War ’n’ Peace, Crime ’n’ Punishment, Sense ’n’ Sensibility. On he went, howling anew with every title. Philip always laughed at his own jokes but this one particularly tickled him. He had his head back against the headrest, laughing in full flight. He could be dark, but he also knew how to laugh. It didn’t matter how bleak or desperate I was feeling, he could always bring me around.
Philip’s country home in Connecticut was outside a small town called Sharon, which struck me as a strange name for a town. Somehow Warren, also close by, didn’t seem so odd.
Philip fought hard for his privacy and for silence. In the city, he’d bought the apartments above and beside his and leased them to quiet tenants. In the country, he’d bought the land around the house’s large parcel so he’d never have to worry about intrusions or disturbances from neighbours.
The country property was edged on one side by a dirt road, which we often took as a shortcut to Philip’s favourite restaurant in town. Along the road, about a mile and a half from the house, there was a bridge over a little stream. One day I told Philip I was going to try to walk there.
‘Watch out for bears,’ he called over his shoulder from the computer desk in his studio.
‘I’ll call you if I meet one,’ I said.
The road was rarely used except by a handful of locals, so I was a little worried about the bears. Once I’d told Philip I was brought up watching Yogi Bear and consequently didn’t really believe bears were dangerous. He took my hand and walked me out to the roadside trash can to show me the holes in the lid, which looked like someone had made them with a shotgun but were in fact from bear claws. ‘Does that clear things up for you?’ he asked.
It was a cool but sunny day and I was thrilled to be out, feeling good about being strong enough to attempt this walk. The walk was beautiful, the sounds of the stream running alongside the road and the chirping birds. The woods were dense, green and fecund, so different from Australia and still a novelty to me. When I reached the bottom of the hill I sat on the bridge’s metal railing, watching the water fall over the edge of a pond and down into a smaller, light-speckled stream that ran over mossy rocks.
Almost as soon as I started back up the hill my right leg began to drag. I had to stop every fifty metres. Once the dragging began it couldn’t right itself. The lower half of my right leg felt as if a heavy weight was strapped to it. I stumbled a few times.
Halfway up the hill, I lay down on the road, sobbing. I wished a car would come around the corner and end it all. I began crawling along the road on my hands and knees. Finally, when the road flattened out at the top of the hill, I managed to walk again. I made it back to the studio where Philip was working. When he turned from the computer to greet me, he saw I was a mess.
He sat me down on the leather couch under the window and I blubbered, ‘I hate this fucking disease!’ I punched my leg with my fist.
‘I know, I know,’ he said with his arm around my heaving shoulders. He said the hill was steep and that when he used to run it, he’d found it hard going. He was trying to comfort me, but I couldn’t be consoled. I was undone.
‘It’s here and it’s now,’ he said. ‘You have to focus on that. It’s here and it’s now. Nothing else.’ And those words did help. It’s here and it’s now. They have become my silent mantra whenever my illness overwhelms me.
Philip taught me about baseball and we watched many games – him sitting in his Eames chair, me lying on the couch with my shoes off. He’d used Joe Girardi, the Yankees’ manager and former catcher, as a model for Bucky’s physique in Nemesis, and I came to love the game as he explained its nuances to me.
For three years we spoke on the phone two or three times a day and often saw each other three or four nights a week, when he was in the city or I joined him for weekends in the country. I had my own room at both his apartment and his house in the country, and I climbed into bed with him most mornings if he wasn’t already up before me. I used to like resting my ear on the hard metal of the implanted defibrillator that sat just below the skin of his chest. We talked and sometimes he made up stories or told me jokes. Then we went to the kitchen and he poured himself a bowl of Great Grains while I made toast. I always thought cereal was for children, but he loved Great Grains – just like a little boy would.
Philip’s first defibrillator had pride of place in the kitchen. When he first handed it to me I twirled the smooth metal disc in my palm. I almost dropped it when he told me what it was. He thought it was hilarious and, eventually, I came to appreciate it too and often picked it up and held it in my hand.
During the summer of 2011, after having publicly announced he was done with writing, Philip started behaving oddly. It wasn’t that his behaviour was out of character, it was that it was exactly in character – when he was writing.
‘What are you up to?’ I said jokingly after about a week of him heading to the studio with the purpose of a man up to something.
‘Nothing, nothing,’ he said, waving his hand in the air as he went out the front door and disappeared until lunchtime.
Whenever I went into the studio he was at the computer, working. Over time I noticed a growing pile of typed pages stacked neatly on the desk where he sat to read and write correspondence and to pay bills. Still he insisted it was nothing. ‘I quit writing!’ he exclaimed. ‘Didn’t you see? It’s all over the papers.’
Then, over a number of days and weeks, I saw him carry into the studio a succession of large black trash bags from one of the sheds he kept locked with a large padlock. Whenever I went in to see him he’d be seated on a chair surrounded by the contents of one of the bags, which seemed to be filled with a mixture of papers, medical records, old chequebooks and diaries.
Still he insisted he wasn’t up to anything.
During that winter ice got in under the eaves and the whole house was flooded. While the extensive repairs were taking place Philip was sleeping in my room and I was out in the studio. During the months of this mystery – him clearly up to something, and no small thing as far as I could tell – his mood was darkening.
One day, as I walked from the bathroom to the bed in the studio’s back room, I noticed on his desk that the ever-growing pile of pages now had a cover page and a title: Notes for my Biographer. I was terrified. I had already been worrying that none of this was going to end well. I’d read Exit Ghost; I knew what he was capable of. I was convinced he was planning to kill himself.
I could have flipped that title page and read what followed, but I never did. Instead I pleaded incessantly with him to tell me what he was planning. I watched him like a hawk, ready to intercept whatever his macabre plan for his exit might be.
Finally I asked him straight. ‘Are you planning to kill yourself? Is that what all this is about?’
He laughed and laughed, but by now I didn’t think it was funny. All I could think was that in his very meticulous Philip Roth way he was working towards suicide. It would be Exit Ghost for real. ‘Okay, okay,’ he said. ‘I promise I’ll show you soon.’
A few weeks later, he handed me the manuscript Notes for My Biographer. ‘Take it,’ he said, holding out the stack of pages held together by a large rubber band. ‘I want you to read it.’
The book was a rebuttal to Claire Bloom’s Leaving a Doll’s House, Philip’s ex-wife’s account of their marriage, which was published in 1996. Many of the stories he’d already told me. He’d talked a lot to me about both Claire and his first wife, Margaret Martinson.
So some of it was not new, but all of it was upsetting. Philip’s manuscript was the saddest thing I’d ever read. I read three or four different drafts and most of my feedback encouraged him to write the good with the bad. ‘No one will believe you if you don’t admit at one point you loved her. Be the gracious one.’
Philip wanted the book published. But no one would touch it for fear of the la
wsuit Bloom might bring against them. At one point we discussed the idea of Philip offering to pay any damages arising from a legal case brought by Claire. More than anything Philip wanted to put the record straight. I wanted for him to be able to put the record straight. I knew how forcefully he’d been struck and blindsided by Leaving a Doll’s House. After its publication, Philip told me New York magazine published a photo of him on its front cover with the word ‘MISOGYNIST’ written across it. Philip went into hiding.
I never bought or read another copy of that magazine after he told me that. How could it be that he could be attacked so viciously by Bloom and a magazine editor but had no right of reply? Surely whatever money it might cost him was worth it to have his side of the story told. To me, knowing him as I did and having seen the documentation – the bags and bags of it, the medical files, the chequebooks – I believed him.
But finally all options were exhausted and he had to let it go. He kept two copies of Notes for My Biographer. Every other copy – and there were many of them – I collected from under his desk in the studio and put into trash bags. Pete loaded them into the trunk of the Volvo and drove us and them back to the city, where I collected the remaining copies and then threw them all down the trash chute in the apartment building. The last I knew, one copy of Notes for My Biographer was with Philip’s lawyer, locked in a safe in Connecticut, the other, as the title would suggest, was with his biographer.
Thirty-nine
Just as there is no definitive test for MS, there is also no sure-fire way to predict its course. No one even really knows what causes it. My doctors couldn’t say for sure how helpful the preventative medication I was taking would be. Nonetheless, I had to self-administer daily injections that left dark bruises on my skin.
Diving into Glass Page 22
