There was an unspoken rule in the studio that we didn’t discuss our ailments. Sometimes it was obvious, but generally we respected each other’s privacy. But one day Mr Jones was doing his stretches and asked me why I was there. ‘You’re so young,’ he said.
‘I’ve got MS,’ I said on all fours, lifting my leg up with a four-pound weight around my ankle.
‘I’m so sorry.’
‘It’s okay,’ I said and kept on with my routine.
About ten minutes later, I approached him while he was resting between exercises. ‘I want to thank you,’ I said.
‘Why? I shouldn’t have asked you that question. It’s none of my business.’
‘I want to thank you because that’s the first time I have uttered those words, “I’ve got MS”, without crying.’
Every week I’d watched as he struggled to make himself better. Against every impediment, he was still punching, still fighting. I just had MS to contend with. I was a disgrace.
It’s ironic, given my reaction to the social worker who suggested I find a support group, that I had done just that in a typically roundabout way. As far as I knew, I was the only person with MS at Sam’s studio. His other patients were mostly struggling with injuries or recovering from surgery. Ailments that would get better with rehabilitation and time. I was only going to get worse over time. Even so, these people became my support group. We didn’t discuss our feelings, our hopes or dreams. We simply worked at getting better. The social worker had been right: people in support groups do better.
I saw so many feats of bravery in that studio. It didn’t matter how much I didn’t want to turn up sometimes, I always left feeling inspired.
Harvey was a large man in his sixties whose right leg was amputated just below the hip. His young assistant pushed him in his wheelchair into the studio. Behind them she trailed a large bag the shape and size of a boxer’s punching bag. I overheard Harvey explain that he hadn’t used his prosthetic leg in some time, while his aide pulled out the ugly contraption from the bag.
When they tried to attach the leg to Harvey’s stump, it became clear just how long the intervening period had really been. Harvey couldn’t remember which straps were meant to go where and since he’d relied on his chair for such a long time, he’d gained a lot of weight. His stump no longer fit into the eggcup-shaped plastic mould, which attached to the steel rod that had a very rudimentary black shoe on the end of it.
For half an hour they struggled to get the straps in order and to fit Harvey’s stump into the mould. When he stood up, his fat flesh oozed out over the edge. Finally, it looked like it was all ready and he tried to manoeuvre the leg into a step, but somehow, after the confusion of the preparation, the foot was facing backwards. I was trying not to stare, but I was transfixed.
Everything was repositioned so the foot faced forwards, but just as Harvey took his first step, a bracket underneath the cup snapped. Harvey sat back down in his chair, sweating and defeated, while Sam looked for a screwdriver to fix the bolts. In the end they all agreed that Harvey needed to go back to the hospital to have the prosthetic resized and adjusted. His assistant put the leg back in its bag and they left as they’d arrived, the leg dragging in its bag behind them.
A few weeks later they came back with a new, equally ugly but better-fitting leg. It still took four of them to get the leg on, but I watched as Harvey took his first steps and cheered as he walked slowly across the room, more or less on his own. Each of the people in that place were fighting different battles, but we were quietly united in our support for each other. I could hold on to a thumbs up from one of my fellow patients for days.
Going to Sam made me fitter, stronger and happier. My appointments with him were often the high point of the week.
I slowly began to feel better as the medications got out of my system. With the combination of stopping the drugs and working out with Sam, weight fell off. My mood lightened. I remember walking down the street one day and suddenly realising I felt cheerful. It struck me because I hadn’t felt uncomplicated lightness like that for some time.
I felt that happiness again when Jack finally decided to move to New York permanently in June of 2012. I had my old purpose back. I could be a mother again. With Jack present I had to pull myself together and remember that it wasn’t all about me and my woes.
I went back to my specialist to tell him I’d stopped taking the medication. He wasn’t pleased but understood my reasoning. We discussed alternatives.
I was running out of medical options. There were two highly effective new drugs on the market, but both had pretty frightening side effects. The odds were slim, but a one-in-10 000 chance of permanent brain damage wasn’t a risk I wanted to gamble on. My doctor thought I was taking it too seriously, but since I’d had extreme reactions to everything I’d been on so far, it didn’t seem out of the question that I could be that one in the 10 000. Somebody had to be.
In the end, I ignored the nurse’s urgent messages. The thought of injecting myself again made me nauseated. The thought of becoming brain dead was worse. I wouldn’t do any of it.
Once, sitting in my doctor’s office, while he asked questions and tapped my answers into the computer, barely looking at my face, I was reminded of the movie The Doctor, which is based on Edward Rosenbaum’s autobiography A Taste of My Own Medicine. The movie version stars William Hurt as a smug surgeon, who keeps his patients at arms-length, the same as every doctor I had dealt with since my diagnosis. One day, after coughing up blood, he is diagnosed with throat cancer. Suddenly it’s him walking along the fluoro-lit corridor of the oncology ward with his arse showing through the hospital gown. He’s lost the power and he knows what the experience on the other side of the scalpel is like. Now it’s him who is scared to death.
As my doctor tapped results into his computer, I wished he could have a taste of this.
Sam never treated me like the doctors did. He made me work and he made me fight. He helped me take control again.
I was feeling particularly strong one day and asked Sam if I could try the treadmill again. It had been six months since my first, disastrous attempt, so he set me up with the safety clip on in case I fell.
I began walking with long confident strides and then, after he left the room, I slowly started running. Soon I was running almost like I used to, with my arms and ponytail swinging. There’s a mirror in front of the treadmill in the studio so patients can watch their form. I was watching mine and it wasn’t too bad. I’d been told my running days were over and I had believed it. When Sam came back into the room he saw my face in the mirror and I saw his. I was crying and he was beaming. I put my head down and focused on my next steps.
All Sam’s training, all my hard work, meant on days when I was feeling strong – not every day by any means, but on those days – I could trust my legs to do what they were meant to do. They could be where they were meant to be, even if I couldn’t particularly feel them. Some days I could feel them, but on the days I couldn’t, I got on the treadmill and ran from memory.
Forty-three
I’d had MS for four years when Paul LeClerc at Columbia University asked me to set up and run a literary festival in Paris. My health had stabilised on a new medication, but friends worried about the toll the necessary travel and another gruelling festival would take on my health.
I’d recently read Salman’s memoir Joseph Anton and was reminded of the quote he cited from Joseph Conrad’s The Nigger of Narcissus: ‘I must live until I die, mustn’t I?’ Salman thought that when he was under the fatwa. I feel it with MS. I must live until I die.
Or as my acupuncturist so clearly put it one day, as she stuck me with pins, ‘It’s not how long you live, Caro. It’s how well.’
Finally, after four years of anger and struggle, I had to question my fear of this condition. I had never been stopped before by anything, no matter how daunting or difficult. I had a baby at twenty-three, was a single mum at twenty-four. I had moved countrie
s twice, this last time at forty. My life had not been sheltered and nothing much – not my lack of education, or money, or the fact that I had a kid to look after on my own – ever stopped me if I set my mind to it. Yet I had allowed myself to be utterly undone by this. I was stuck.
I had lived my life denying that my father’s disability had been a big deal. I had idealised his life and let that shield me from all of his suffering.
I was an observant child. I watched quietly as people stood beside my father, speaking to him slowly and deliberately, assuming his mind was as paralysed as his body. Telling him over and over to accept his position. ‘Give in to it’, ‘be realistic’, ‘be happy with what you’ve got’.
By the world’s thinking, he should have accepted that he couldn’t get a university degree because he couldn’t get into the lecture halls on account of the steps. Accepted that he couldn’t take a job he was qualified for because no one would push him around to meetings in his wheelchair, or because he couldn’t lift his hands to push the elevator button or open the heavy doors to the entrance of the building to get inside in the first place. ‘Give it up, Rich. You can’t change the system.’
I had always focused on his defiance, his resilience; he had made it all look so easy. He didn’t talk to us about the frustrations, the hopelessness, the anguish of being pitied. Each of us took away different lessons. But I learned to keep moving.
I had to stop thinking about the what ifs, what my future might look like if the MS meant I could no longer work. Those musings are a losing game. They’re too overwhelming and get you nowhere.
I have to constantly remind myself that there is absolutely no point grinding myself into misery, wondering what might happen. Most importantly I have to remind myself I am not to blame. My father’s story about helping the woman with the luggage suited him and his needs well. But I don’t want to feel responsible. Blaming myself is what I had always been taught to do. I say sorry more than any other person I know. But I did not bring MS upon myself.
So when Paul called me to say he had the green light for the festival in Paris, I said yes without hesitation.
Two weeks later, with my schoolgirl French, I was on my way. For the next eight months, I flew to Paris every six weeks and generally stayed for two, except in the lead-up to the actual event, when I stayed for a month and a half.
Whenever I was in Paris, I lived in a beautiful studio apartment in Reid Hall. I made friendships that will be lifelong and came to know Montparnasse as my own. Reid Hall has a resident black cat called Yuki, which means ‘snow’ in Japanese, and she became my companion late at night. She’d jump on the roof and slink in through my bathroom window or meow so loudly at my front door that I had to get up and let her in.
Jack flew to Paris to help me and stayed the month of the festival. He knew instinctually how it all worked. He came in and made things happen when others had stalled on them, yet his French consisted of no more than being able to say hello and ordering a coffee. It was something to witness.
I have my father to thank for whatever professional success I’ve had in this business. From an early age, I had to think about whether there was a ramp at the end of the pavement. We couldn’t just walk along the street, we had to know whether my father would be able to get off the footpath to cross the road. I can’t put a writer on stage without having thought through and considered all the potential problems. I never wanted my father to be uncomfortable; I don’t want that for anyone I work with either.
I strongly suspect that MS is a lifestyle disease, that stress is the underlying, essential link in a chain that eventuates in late-onset MS like mine. I believe you can have any number of what they think are the contributing factors – low levels of vitamin D, et cetera – but it’s long and sustained stress that brings everything together to launch the body’s attack on itself. I’ve been stressed my whole life. In fact, I think being highly stressed was my normal state.
Eventually, quite simply, stress took its inevitable toll. My body said, ‘Enough.’ Most doctors will dispute this, and the research into the link between stress and MS has produced contradictory and unclear results, but then again they have no real idea what does cause MS.
Every day we watch on as our bodies betray us and the medical profession has few, if any, answers.
Since my diagnosis, I’ve been the patient of at least five different neurologists. I’ve injected myself hundreds of times with different kinds of prescribed medications. At various moments these drugs made my hair fall out, caused me to become fat, sick, depressed, suicidal and, on occasion, all five things at once. The scars on my arms, legs, stomach and back from one injectable medication will be etched on my body forever.
In 2012, America’s National Institutes of Health issued a total of 325 individual grants amounting to more than $115 million for Multiple Sclerosis research. In addition to the NIH, in the fall of 2011, the MS Society announced $45.2 million in new funding. Projects included ‘explorations of new approaches to promote nervous system protection and repair; a clinical trial of a training technique to enhance cognitive function; and a study looking at how common bacteria that live in the human body might trigger immune attacks on the nervous system in MS’.
All to say, there’s a lot of money being poured into MS research. And yet as everyone in the MS business reluctantly has to admit, there are no cures on the horizon and no definitive answers.
All but one of my neurologists has tried to calm me as the disease grabs me harder in its grip with the words ‘this is the best possible time to have MS’. Of course that’s true – no one would argue a return to earlier treatments – yet we are still very much in the dark.
My three-monthly check-ups with my specialists mostly consist of them asking me to jump on one leg, then the other. I walk heel–toe, heel–toe, along the corridor in a straight line, without stumbling or falling. I have to walk as fast as I can along a printed strip in the carpet while I am timed with a stopwatch. My arms and legs are stuck with safety pins. A tuning fork is banged on a hard surface and placed on my feet and hands to see how long I feel the vibrations. I have to touch my nose with my finger and then reach out to touch the doctor’s index finger, which he moves around in front of my face.
Of course, these simple exercises reveal some deep neurological truths, but they often feel pointless. It’s hard to feel any enthusiasm for my regular appointments. I know on my own, without expensive tests, whether I can feel my legs or not. I know when I can hardly drag myself out of bed in the morning or when I want to do nothing other than sleep all day.
One of the medications I was prescribed – a brand-new addition to the suite of MS drugs approved by the FDA – was originally used to treat sofas against mould. It costs $4 700 a month and yet no one – not my doctor nor the drug manufacturer – could tell me how or why this drug might work to slow MS.
Until I happened upon my current specialist, Dr Erik Charlson, a miraculous human being at NYU Langone, any time I asked a doctor for more than the most rudimentary explanation of my condition, or how the medicines work, I was more often than not dismissed with a wave of annoyance. Only Dr Charlson has had any patience when I’ve researched alternative theories (not all of them insane) or treatments and posited them for us to discuss. Even if it’s only to discover their irrelevance or wrongheadedness, I value the opportunity to talk about the mystery we’re both grappling with.
Dr Charlson was the only doctor to explain the science behind why there could be no direct connection between my father’s condition and mine. Of course my father’s polio loomed large in my mind and I’d asked each of my doctors about it. Mostly they scoffed. Now, for the first time, someone explained how the polio virus’s effect on my father’s body could not have had a genetic impact on me. While my father and I might have shared genetic weaknesses that made us susceptible to such diseases, Dr Charlson assured me I wasn’t predisposed to MS on account of my father’s polio.
All specialists
believe they are at the cutting edge of whatever research they’re involved in and offering their patients the very best of what’s available. Each of them is bringing all their knowledge, ability, creativity and vision to the search for better solutions. But they are only human: of course they become vested in their preferred hypotheses about the causes and cures for mysterious ailments, at the exclusion of others.
While I have the utmost respect for the dedication and personal commitment of these scientists, from where I stand the MS field looks like a feedback loop. A small number of favoured theories are admitted into the circle while all others are excluded and ridiculed. New approaches to treatment and new perspectives on the illness are often shut out.
To come up with a cure or even just a few answers for diseases like MS or Parkinson’s we don’t need people working doggedly only in their silos on their specific arm of research. We need a dialogue between all those specialists and other really smart people from a number of different disciplines. Everyone knows you can’t fix a city ravaged by crime just by calling in the cops.
Meanwhile, as research takes place in silos, I watch on, trying to keep my nerve as my legs get stiffer.
Forty-four
Now I am in Italy – on my first proper holiday in decades. On my own and happy in paradise.
A friend knew of this little seaside oasis and told me about it before I left for Paris. I was searching for a place to go after the festival, when I knew I’d need sunshine and rest. She showed me a picture of Marina del Cantone and I didn’t need any more persuading.
Diving into Glass Page 24