Simon Fitzmaurice in Toronto: Up, up and away on the rocky road to Canada

The writer and film maker has motor neurone disease but that didn’t stop him and his wife Ruth heading to Toronto when his film ‘My Name is Emily’ was being shown there. This is the story of his Canadian adventure

‘We hit the streets and walked for miles and miles through the shining city. We walked so far I felt the familiar tightening of the skin on my face from the sun that can only mean one thing: Irishman on holidays.’ Simon Fitzmaurice  in Toronto for the screening of his movie, ‘My Name is Emily’

‘We hit the streets and walked for miles and miles through the shining city. We walked so far I felt the familiar tightening of the skin on my face from the sun that can only mean one thing: Irishman on holidays.’ Simon Fitzmaurice in Toronto for the screening of his movie, ‘My Name is Emily’

 

I am nervous. There are five people talking at once. About me. I look at the one who is not talking. He is in charge. I look into his eyes. He is slightly nervous but very calm. He is on edge because this is a new situation for him and he is out of his comfort zone. I can relate. I’m way out of mine. But mostly he is calm. And that calms me. There are questions in his eyes and clearly he is thinking fast about every possible angle of the task while everyone else is talking.

I look down at his chest. A little badge says Airport Police. I understand more about his calm. I focus on him entirely and feel myself relax. I hear Ruth’s voice speaking above the others, explaining what has to be done. We are a knot of people just outside the door of the plane. I can see the runway through a gap in the plastic. There is a lot of noise. The policeman says a few calm words and five people lift me into the air.

* * * * *

For the last three years I’ve been invited to speak at a seminar in the UCD medical school. It involves final year medical students and the subject is empathy in medicine. It is a real issue in medical practice and the students, the future waves of doctors, consultants and surgeons, are deeply engaged with the fact that empathy, its presence or absence, can radically affect their professional and private lives.

Empathy is, to me, the single most important word to humanity. It defines our unique experience. Whatever empathy animals possess is innate, like the bond with their young for example, which is clear among most and fiercely defended.

We are different. Innate instincts guarantee nothing. We can turn on our young, in ways most animals never would. It is our most damning attribute as a species: child abuse. We make love and art but, not bound by any innate empathy, we also make war and genocide. Our ability to take out own lives overrides the most fundamental instinct in nature: the will to live. We are terribly free.

* * * * *

I am airborne. No computer, Ruth and I use an alphabet chart to communicate. Ruth calls out the letters and I wink for the one I need. People glance and look away. I hear my nurses, Adam and Marian, talking excitedly behind. The air hostesses are beyond kind, they treat us as if they know us, it is the best example of human empathy. They mind us. Coffee and 100 films to choose from: happiness is.

Two films later and we begin our descent. For the first time in five years, I’m in a different country. Five years doesn’t sound like much, but I’ve had a lifetime of change in the last seven.

I’m still nervous. I have to go through the five men lift again to get back into my chair. If my chair is still in one piece. And then travel in some strange car to some strange room in a hotel. Things I would have relished in the past. But not now. I’ve forgotten how to travel. Not just how, I’ve forgotten the why as well. I had every reason to make this trip, but descending into Toronto, I’ve forgotten all of them. I won’t tell my travel companions. It’s not fair given all the effort everyone has put in to the journey. I will just roll with it.

* * * * *

Most of our experience of empathy in Ireland is in the every day, as opposed to life and death situations. UCD asked me to speak because mine was of the latter kind. Consultants told me I should turn off my ventilator. That was a question of empathy, of medical ethics, of life and death. Millions suffer from lack of empathy every moment of every day. But what it comes down to is the day an occupying army rolls into your town. And the following day a friend knocks on your door to take you away. He is no longer your friend. That, to me, is the ultimate failing of our species.

But I see beauty too. And good. In the faces of others. Like the policeman. This is not beauty of any sentimental kind, this is like a car battery, pulsating with energy. In men or in women this is the kind of beauty that saves your life.

* * * * *

It’s not a car, it’s a bus. A big one. I go up in a lift at the back just to get in. My car at home is dark and low and my head is so close to the roof that I can’t see out the windows. I feel safe in there. A cocoon. This is the opposite. It is high and bright. With huge windows all around me. My introduction to Canada is the bubbly driver who if he could blow bubbles they would be black because it sounds like he smokes three packs a day. He buckles my chair to the floor with carefree assuredness and wishes us a husky welcome to Toronto like the ghost of Christmas present.

There are only about three seats in the whole bus. It is completely hollowed out for wheelchairs. It is every wheelchair user’s fantasy, like driving into a car park where every space is long and wide, except three: which have day-glo signs with the symbol of a white figure walking and the same symbol on the car space itself (and they better bloody have the sticker to prove they’re “abled”).

Adam sits on the floor. It’s only us and the driver. Ruth and Marian travel in a non-Christmas-fantasy vehicle. Boring. We take off. Literally. Sixty-a-day does zero to 60 in however fast this Hogwarts express can do. My front wheels lift off the floor. I look at Adam but he is relaxedly looking out the window. He hasn’t noticed, but it’s been a while for me. At home everyone drives me so carefully because with the car’s suspension and my head inches from the roof, well you get the idea. This is its polar opposite. The roof is up there somewhere and the suspension is like sitting on a cloud. Result: I’m thrown all over the shop but feel perfectly safe. Exactly like a ridiculously good rollercoaster. And it’s been a few years. And just like a rollercoaster, I feel like I’m outside because of the 360-degree glass. I’m not exaggerating. We swoop and swish down the highway towards the spectacular Toronto skyline just as the sun is setting and inside I’m laughing my ass off because I’m flying down the highway on a magic cloud-like Monkey.

Adam notices. He puts his hand on my knee and gently pushes my front wheels back to the floor. But it’s too late. The damage is done. I’ve remembered the how and the why of travel.

* * * * *

I cannot move. A major way of my dealing with that is routine. Over the years I have developed a routine for getting up, for going to work, for my needs during the day, for going to bed. It is a rock of stability to me. Everyone has their routine, mine is just really really elaborate. My nurses know it so well that it’s usually done in silence and I think of other things. This is crucial to my mental health. If I had to think about all the help I need every day, about how utterly dependent I am on the people that provide that help and on their constant empathy, I would go crazy.

But like all routines, it can stifle as well as liberate. That’s where Ruth comes in. She believes that a little chaos is healthy. And when we got to the hotel and none of my equipment worked because of the voltage difference and my bed was really hard and not the right sort to protect my precious ass, in other words when The Routine was shot to bits and I was starting to implode, my beautiful wife leaned down to my ear and whispered gently, her hand on my shoulder, “This is good for you.”

She was right, of course, so instead of worrying we hit the streets and walked for miles and miles through the shining city. We walked so far I felt the familiar tightening of the skin on my face from the sun that can only mean one thing: Irishman on holidays.

And the very next day when my film had played and I was before the crowd as they rose to their feet and tears pricked my eyes I thought to myself, I did it.

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