My father taught me to face hard facts straight. There was no sugar-coating it: my future was completely unknown.
From an early age, I understood that life is chaotic – one day you could wake up and find everything gone to hell. I had always lived with urgency and hunger. Now I knew why.
Open your eyes and you can always see someone worse off than you. I was in my forties when I was diagnosed. Many people contract MS in their twenties. I had left PEN for a good job running The New York Public Library’s centennial celebrations. I had great friends, I was living in New York. My feelings for the American writer had lost their headiness over time but I had somehow struck up an intimate friendship with Philip Roth, and that’s where my attentions were. Jack was with me. By any standard I still had much to be grateful for.
But I couldn’t summon up any enthusiasm. Somewhere down the track I would be living a life I’d never chosen or wanted. It made the thought of going on unbearable.
Over the years my mother’s attempted suicide had me thinking a lot about what drives someone to take their own life. The man who found Mark Rothko dead in his apartment mopped up the artist’s blood with towels. Rothko took razor blades to the veins in his elbows and bled himself out of life, the blood oozing onto the floor like his big, pulsing, moaning paintings. Life in red and black and then just the still and stop.
I have made a living of being very good at details – I knew I wouldn’t make a misstep – but I would never do that to Jack. I could never leave him so cruelly, but I have to admit that in the days and months following my diagnosis I stopped caring about daily life and thought about how easy it would be to accidentally slip onto the subway tracks.
When I was still living in Sydney I returned to London once, to revisit the haunts of my youth, and looked out on the Hampstead High Street to see a man in his late fifties crawling on his hands and knees in the middle of the road. It was clear from his fine suit that he was a Hampstead resident with a lot of money. Cars were honking and driving around him and he was swerving in his slow crawl to try to get in their way.
Everyone was watching, but no one was acting on the scene that was playing out in front of us. I walked over to him in the middle of the road, standing with my arms outstretched as cars swerved around me. I was trying to stop the traffic and yelled for the people standing aghast on the footpath to call the police.
‘Let me die,’ the man pleaded, looking up from the bitumen.
‘No,’ I said. ‘I won’t. Not here, not like this.’
‘Please, leave me alone,’ he said politely. ‘I just want to die. My life is nothing. Just leave me.’
‘You have to get up,’ I said more softly. I bent over to get eye-level with him. ‘Please.’
Still he refused. I continued talking to him but he wouldn’t budge. I hitched up my dress, saying a silent farewell to my new fishnet stockings, and told him, ‘Well then I am going to crawl along here with you.’
It turned out the man had lost his wife to divorce and his kids were gone too. He could see no end to the sadness. He begged me to let him be delivered.
‘What you are doing,’ I said, ‘is not fair. Some poor person hits you in the middle of this goddamn street and their life is ruined as well. I’m just going to crawl along here with you until you stop.’
Finally the police made it through the traffic. I was relieved of my post by an officer, who eventually led the man into a police car while the other questioned me.
I often wonder whether that man finally saw his way to end it or if he was able to forget that dark day on the sunny High Street.
I thought of a line from the poet Philip Larkin about death:
Not to be here,
Not to be anywhere,
And soon; nothing more terrible, nothing more true.
Larkin had also said, ‘Beneath it all, desire of oblivion runs.’
On the tube home to my hotel a few hours later, I began to shake from shock.
Often I think our children know more about us than we give them credit for. As parents, we think we know them the best, but I’m not sure the opposite isn’t the case.
I tried to hide from Jack the desperate thoughts I was having about my situation and diagnosis. As best I could, I put on a cheerful face and tried to make everyone believe I was doing better than I was. I think I was pretty convincing, but there was no hiding anything from Jack. He saw right through it and I watched as he hovered and kept an eye on me. I knew he was doing everything in his power to make sure I didn’t act.
Forty
When it comes to facing change and challenges, I’m cut from the same cloth as my father. I run from comfort. But I couldn’t immediately find peace with my illness in the way he had. MS was never the adventure I pictured for myself. My father may have seen his diagnosis as something interesting but I already knew exactly what it meant, how much suffering was involved, not only for the person facing the disease but for those around them.
The nurse who came to my house to start me on the new medication told me, ‘This medicine for you to inject three times a week is made from the uteruses of Chinese hamsters.’ She couldn’t understand why that made me laugh and I only stopped when she took hold of my wrist and said, ‘Oh, don’t worry, they’re not really Chinese.’ Like that was my problem with it – the nationality of the rodents whose uteruses I’d be injecting for the rest of my life.
Those hamster’s uteruses made me sick for twenty-four hours each time I injected them into my muscles. They stopped my periods and made me fat. Addled by the medication, sick three days out of seven, I was so desperate I actually began to think about how I could kill myself. Putting the bigger question about Jack aside, I knew it wouldn’t be difficult to get myself admitted to the hospital again, where I’d inject myself with enough heroin – which I could easily get hold of on the streets of New York – to put myself to sleep for good. God knows the injecting part of it wasn’t a problem anymore. Killing myself in a hospital was a genius plan. I didn’t want anyone to have to deal with my dead body. I wanted trained professionals to find me, just a short gurney-ride to the morgue.
For three twenty-four-hour periods a week I had debilitating, flu-like muscle aches and blinding headaches. I felt like I was looking at life through a blackened lens. If I had been convinced that the pain, the bleakness and discomfort of the medication was keeping my MS at bay, perhaps I could have stuck it out. But it wasn’t. My symptoms were worsening.
When I called to talk to someone from the pharmaceutical provider about the side effects, it didn’t improve my mood.
‘Hello and welcome to 1800-Special-Pharmacy-Services. Your unique ID number is 399 997. Please memorise it or keep it in a safe place – you’ll need it at all times.
‘We would much prefer you to think of your ID number simply as a random computer-generated figure. However, you probably know it is not. That’s right! There are 399 996 sick people just like you on our medication. Don’t do the math for what that makes us worth because the numbers will blow your infirm mind.
‘I’m sorry, patient 399 997, would you mind if I put you on hold for a moment?
‘Hello? Are you still with me? I apologise for keeping you waiting for thirty-three minutes and fifteen seconds. I hope you enjoyed the music and hearing our special infomercial however many times we’ve inflicted it upon you during your wait. Did those inspiring testimonials from John, Judy and Harry make you feel like you too can still achieve great things despite your recent diagnosis? Isn’t it amazing that Judy went on a cruise all by herself! See, you can do it! Chin up.
‘Now, what were you saying? I’m sorry, the line seems to be breaking up. It sounded like you said you were having trouble with your medication. I think we must have a bad connection. Surely I must have misheard the bit about severe and debilitating depression. Did I hear thoughts of suicide? Oh, this really is a terrible line.
‘I have to say you are sounding a little agitated now. Really, if I can offer a
little advice, just entre nous – that’s not good for you. You should really try to keep that in check.
‘Okay, I understand you’ve done everything we told you to do, exactly as we told you to do it, and you’re still having trouble. Have you talked to your doctor about all this?
‘No? Not yet? Good! Yes, I understand, it takes three months to get an appointment with your specialist and you read in our brochure that we’re open from 8 a.m. to 10 p.m. EST and there’s always a nurse on call. I’m glad you took the initiative. That’s a very good sign.
‘Well, yes. All our health professionals are on the payroll and it’s true it was a bit of a revolving door of nurses a while ago. Apparently some of them felt working for us compromised their Florence Nightingale pledge. I can assure you, though, that since unemployment hit double digits, no one’s made any mention of Florence!
‘Now, what did you say your little side effects were? Hair loss, depression, thoughts of suicide, fatigue, nausea. And you haven’t had a period in how long? Oh dear. I mean, well, that’s in the range. Now, let’s see …
‘Sorry? And your symptoms don’t seem to be improving either? You read what? Now really, 399 997, you shouldn’t go worrying yourself with so-called “facts” and silly statistics. They’ll just get you in a muddle. Leave all that to us.
‘You can’t go getting yourself all in a flap about scientific research that says our very expensive medication doesn’t actually work. Like I said, getting stressed out is really not good for someone with your condition. At any rate, I’m told that scientist is quite shady – he’s Italian, you know – and you know how easy it is to put things up on the World Wide Web. There’s all sorts of harmful misinformation out there from people trying to take advantage of vulnerable people like yourself. I can’t tell you how simple it is to pull the wool over people’s eyes.’
I stopped calling and went cold turkey. I didn’t care if being off my medication meant that my symptoms worsened. Nobody could tell me if the medication worked anyway. It could well have been slowing things down, but from my point of view while my trouble walking was getting worse, these MS symptoms were much easier to handle than depression and chronic flu.
I decided that life was today, not what it might be in three years. The medication might help me in the future, but what was the point of that if every day between now and then was a living hell? It’s here and it’s now.
Forty-one
Before he was scheduled for back surgery in 2012, Philip took me through instructions should anything go wrong, the names and numbers of all the people I’d need to call to put things in train. Philip was exact, practical and unsentimental in almost everything he did. At the bottom of the second page was information about his insurance policies – housing, life and various others, then the words ‘Umbrella Insurance’.
I started laughing. ‘Only you!’ I screeched. ‘Only you!’
‘What do you mean?’ he asked, perplexed.
‘Umbrella insurance! Who gets umbrella insurance?’ I said, laughing, and acted out a skit of him losing his umbrella and filing a claim.
Explaining that it was an insurance policy covering excess liability, he laughed heartily, repeating my words to him. ‘Only you! Only you!’ he howled right back.
The next morning the laughter continued in the back seat of the taxi as we drove through the empty streets to the hospital. It eased some of the foreboding we both felt.
Philip used to say old age is ‘a massacre’. It was. Of course, I was in the midst of a massacre all of my own.
Eventually his needs and mine collapsed under their own weight and the ‘we’ that we had been ended.
Before that, though, I could arrive at Philip’s apartment any time I felt defeated by the battle, take my shoes off, lie on his couch and cry. He’d put an alpaca-wool blanket over me and bring me a glass of wine. We’d talk and he’d bring me out of my despair with practical advice, jokes and anecdotes.
When we were in the country together we listened to Susan Kennedy’s Big Band Hall of Fame on WMNR each Saturday night. He sang along to Frank Sinatra and the Andrews Sisters and quizzed me about the tracks. Sometimes we danced.
Forty-two
One bright afternoon, walking along 116th Street about six months after giving up on the medication, I took a spectacular fall. Senegalese men in long elegant robes were standing on the footpath selling spices and cheap suitcases held together with chains and padlocks. Distorted music blared out onto the street through bad speakers.
I was watching a little girl skipping beside her mother. Sure enough, the moment I was distracted, my foot dragged and caught the pavement. I went down hard, smashing the three wine bottles I was carrying home for a dinner party – the first I’d hosted in a very long time.
People came out of their shops. One kind man sat me in a chair, handing me paper towels for the blood. The little girl I’d been watching ran up to see if I was okay. I told her I was. She asked to see the gash under the wad of blood-soaked towels.
‘You don’t want to look at it. It’s pretty disgusting.’
‘Yes, I do,’ she said so enthusiastically I almost complied with her demand.
I hobbled home deeply shaken. The illness was now really showing itself. The day before, in an act of self-regard, I had bought myself some expensive new clothes, which I was wearing when I fell. I hadn’t bought clothes since before my diagnosis. These were now ruined.
The doctors had told me exercise was important. I knew it was true, but I felt so defeated I’d given up on everything. In my previous life, I’d run between six and ten miles three times a week. I did yoga. I was strong and fit. Now I was fat, my hair was falling out and I was about as out of shape as you could be.
I didn’t want to go out. I didn’t want to see people. I didn’t want to talk or think about being sick. I didn’t tell many people about my illness, only those I truly trusted, which wasn’t many. As much as I loved my friends, when I was with people the subject always came up and I simply wanted to forget. I hated the question ‘How are you?’ It came from a good place and people asked because they cared, but what could I say? That I wanted to kill myself?
The social worker had said that patients with strong support networks do better than those without. I had a wonderful network of friends, who would have done anything for me, despite us being fairly new friends, but instead I isolated myself.
Why bother when there is not a thing in the world you can do to change what’s happening to you? I had spent my life controlling things – I’d made a career of meticulously accounting for every and any possibility. I was ahead of problems before they happened and, when they did happen, I was a great fixer. But here I was in my own crisis, dealing with a body that had a mind of its own, and there was not a thing I could think to do.
But from somewhere in all that darkness came a small but significant voice, ‘Pull yourself together.’ It was my father’s legacy taking control.
As fate would have it, I happened to be walking past a physical therapy studio two blocks from my apartment. Almost without realising what I was doing, I found myself inside, talking to the receptionist.
‘Play your best hand with whatever cards you’ve got,’ my father said. It was a good lesson.
When I asked if I could make an appointment, she inquired about my ailment.
‘I have Multiple Sclerosis,’ I stammered and began to cry. Saying those words to a stranger still filled me with shame.
‘Okay,’ she said matter-of-factly and made me an appointment for the following day.
I almost cancelled, but I dug out my old running shoes and track pants to arrive at the appointed time. Sam, the young Indian therapist, took notes as we talked. Again, I cried when I said the words to identify my disease. I explained how I’d taken a big fall and now could hardly make it around the block without my leg dragging. He explained his methods and we got to work. I was incredibly weak and out of shape. Just supporting my own body weight made
my legs shake and my arms wobble.
Very early on Sam put me on the treadmill. I’d never used one before. I’d always been of the mind, why run on a treadmill when you can run outside? I found it extremely disconcerting and difficult even to walk on. I was so bad at it that Sam had to connect me up to the safety clip so I wouldn’t fall off the back end of it like a slapstick Lucille Ball. After that first attempt, I was nervous to go on it again.
Sam steadily increased the intensity of my routine, working on different areas of weakness and pushing me hard. When I was lazy or feeling defeated, he told me straight that I was copping out. He made me fight when I wanted to give up. He had me doing side planks – an exercise on the floor where I lay on my side and lifted my hips off the ground. Since my right leg can’t support my weight, I devised a procedure that involved bracing my feet up against Sam’s stainless-steel refrigerator. Once my hips were raised off the ground, I had to hold the position and lower my free arm to the ground fifteen times.
MS has only affected the right side of my body, so while I could eventually do the routine on my left side, it was nearly impossible to get off the ground on my right. Sam always had to squat down beside me and lift me up off the ground. It was embarrassing. I hated him feeling my weight and lifting me, but he did it every time – until one day I got up all on my own. The other patients cheered and I could see that Sam was proud. I was proud. It was a huge achievement.
Sam worked with three or four patients at a time. For many months, I was the only white person there. Most of the other patients were elderly people who’d moved to Harlem from the South.
We were a motley broken crew, but we cheered each other on in our battles against our ailments. An elderly gentleman, Mr Jones, who’d had a stroke and a knee replacement, was one of my favourite work-out companions. We didn’t talk a lot, but he was always happy to see me, and I him. We encouraged each other when we battled to master a new exercise and cheered when we got through a difficult one.
Diving into Glass Page 23
