Friday, April 12, 2013
Thursday, March 14, 2013
"What are you doing?!" demands the woman, as if to say, "I've caught you in the act!" Implying that in a room full of fleshy, socially lubricated bodies, I should be talking to a "real person", not an image on a screen.
I explain the situation to my inquisitor: "We both have cystic fibrosis."
"I'm so sorry," she says, feeling guilty. "It must be so hard that can never be in the same space, that you can't touch."
"Thank you," I say, and return to my date, to the country where I belong.
I know we can never touch. Still, we huddle close to our computer monitors. She smiles. I blush. Our future burns and crackles; this moment drags heavily along the floor.
Wednesday, November 23, 2011
This is a draft of a talk I gave on Nov 23rd to first year medical students at the University of Toronto, St. George and Mississauga Campus'. I spoke alongside my friend and fellow CFer, Shannon Price. The talk was a part of an annual lecture given at the University of Toronto by the Cystic Fibrosis Team at St. Michael's Hospital.
To prepare for this talk, I started thinking about my interactions with young doctors. When I'm in the hospital and not feeling well, a lot of young doctors say to me, "I really don't know what you're feeling, but I’m sorry you’re feeling this way.” In other words, "I can't empathize, but I sympathize." This is a familiar experience; even if you don't have a chronic illness. All of us have said something like this. All of us have heard it.
On the surface, this seems right. You don't have CF. I do. You're not feeling my chest pain, or feeling my sadness when a friend with CF passes away. You're not having to spend 3hrs a day dealing with physiotherapy routines and home-care visits.
If we start from this premise, however – that my experience is solely mine, and maybe I can talk about it, but it can’t really be shared – then patients like me will always be trapped on the inside of an illness, and you doctors will always be on the outside, looking in.
So I want to tell you a bit about what CF is like, but I want to do this by trying to relate it to experiences you may have had. I hope that once you’ve heard my friends and I speak, you’re no longer on the outside, but on the inside, sharing CF with us.
I want to talk about three experiences that I hope help to make alive the experience of CF. First is the experience of mopping a floor. Second is the experience of being in love. And third is the experience of playing football.
1. Mopping floors
1. Mopping floors
I’ve mopped floors. Hopefully, all of you have, at some point, mopped the floor. Except, for me, the floor is my body.
I get up in the morning, and inhale a bronchodilator. Then I inhale a mucolytic. This takes up about 35mins. Then, 30mins of postural drainage, followed by 10mins of breathing techniques. Then I inhale an anti-biotic, and then some anti-inflammatory medications: approx 2 hrs total. Then my day starts: I become a grad student. I write papers. Talk to students. Prepare for seminars. And then I come back home, and do this process all over again.
All of this feels a bit like mopping a floor. The floor gets dirty, so you mop it up. The next day, the floor is dirty again: you mop it up. You’re never going to, once and for all, mop the floor. You're never going to mop the floor in a way to end all floor mopping: someone is always going to be spilling something. And this is what it feels like, for me at least, do go through my medical routine: I get up in the morning. My lungs feel full of mucus. My airways feel tight. I get out the medical equipment, and I clean things up. And then I come home, and sure enough, my lungs feel full of mucus, and again, my airways feel tight. So I get out the medical equipment, and again, clean things up, again.
This was aspect of CF life was emotionally difficult for me. Not because I don’t like domestic labour, but because for someone who spent his life being an over achiever, who felt like, with enough hard work, I could make things go my way, here was once thing that, no matter what I did, I couldn’t control
2. Being in love
Imagine that you’re making out with someone. Not just light kissing, but really going at it. You’re totally into it. The other person is totally into it. Surely you’ve also had this experience. What’s amazing about this experience is that you get totally wrapped up in the other person. You forget about the time. You forget impending deadlines. There could be a bombs going off, and if you’re really into it, you’re not going to notice. This is the experience of being in the flow of something, of being immersed in something.
Now imagine that you’re incontinent. Or, imagine that you have a coughing fit: you start coughing uncontrollably, spitting up yellow putrid sputum. You have to disconnect from your partner and attend to your body. Sure, you’ll eventually catch you’re breath, but it’s going to take some work to get back into it.
That’s essentially my experience as a university student. It’s the experience of being immersed, and then being pulled away, of not quite feeling connected. I study philosophy. I get really into, really excited about a paper. I'm pulled into an intense study of Plato. But then I get sick, or need to go to the hospital, and all my momentum slows down.
Everyone says, "Oh, it’s so wonderful, you’re going to grad school!" But the reality is that I'm not really immersed in grad school life. I do what I can. In between treatments, hospital visits, feeling sick, and needing to sleep, I read Plato, mostly by myself, and then I write a paper, and then someone at University of Guelph marks it.
To summarize: it’s not that I can’t make out. I can. And frankly, I’m pretty good at it. But it’s harder for me to feel immersed. More work has to be done so I can feel connected. And I have to take a lot of breaks.
3. Playing football.
I’ve never played football. I’m weak. I get tired easily. And I have an IV line in my chest. But I do play on a team: a team of people who are touched by CF.
Think about what it’s like to play football. Every player does their part; no one person could do it alone. The throwing guy, throws to the catching guy, who throws to the running guy. What's especially key about this example is that the work of one person is magnified by everyone working together. There are some tasks that require a team. You can't win a football game alone, and you take care of CF alone. This is true in many senses. It’s true that I couldn’t go to school, or dance, or speak in front of people if my family, especially my mom and dad, didn’t help me with my medical needs. My mom helps me mop the floor of my body. My dad supports me financially when I can’t work.
It’s also true that CF connects me to a team of people who share a common genetic mutation, and therefore, a life that is similarly shaped. We can’t hang out in person anymore, so we spend all of our time on facebook. There we become friends. Sometimes we become lovers. I can't tell you how compelling it is to be in contact with people who "get" your life immediately.
Finally, CF makes me a part of a team of people whose job it is to help me figure out how to live with it. I think this is very significant things. There’s an entire team of people, like a band of superheros with different super powers, that are fighting this CF battle with me, and all this people working together means that the standard of care is very high. I have a pretty hard case. I’ve been on IV anti-biotics for almost 2 years straight. I’ve gone through 16 back to back IV combinations. I still go grad school. I do research. I write papers and give talks. I am, very slowly, on my way to finishing a graduate degree. I’m pretty sure this all happens because the dietatins bug me about my blood sugars, and the phsyiotherapst makes sure my physiotherapy technique is good, and the social worker makes sure my life is balanced. So I’m pretty grateful to be on a team, where many smart people decide together how to take care of me.
I hope that when you begin your rotations in three years from now, you will remember what CF really is: It’s mopping the floor, it's making out when you have a bad cold, and it's playing on a team.
Sunday, October 9, 2011
My grandmother's in a nursing home. Stuff happens there: residents get wheeled to meals, sometimes they play bingo, sometimes they hobble around the halls.
And she's right. Each day it's the same meals at the same times. The same faces animated by the same pains. The same activities with the same motive: to occupy time instead of building something within it.
Days change. Seasons change. Time pushes on. Yet everyday - whether Monday, Thursday or Sunday - is experienced by my grandmother as the same day. Something happens ("bingo!"), but doesn't register as a happening.
For us to experience something happening, more needs to happen than just the bare fact of a happening. Or, put differently, what happens and what we experience doesn’t necessarily coincide.
Leaves fall. Matter sits around, and then bumps into other matter. Organisms grow, and die. The world happens, and we primarily see ourselves as witnesses of this happening. There’s something really true about this: this strange mysterious thing we call the world moves on it’s own, which is to say, it doesn’t need us to tell it what to do. And this means that we’re primarily seeing something unfold. Chipmunks forage on their own, and collect seeds that have fallen on their own, which come from trees that have grown on their own…
So, in one sense, when it comes to the world, someone can ask, “what’s happening?” and all we need to do is look and describe what we see.
But my grandmother’s senses work perfectly. She is a witness to all these happenings. She sees the halls, and the residents, as she gets wheeled to dinner. She hears the bingo guy (“34O!”). And this perhaps is the problem: she experiences her reality as something to witness, as something unfolding outside of her, rather than something to participate in. Things are happening in some objective sense, but they aren’t happening to her.
Bingo – or anything else, for that matter - needs to find someway of connecting with her, someway of mattering to her – but the bare fact of bingo happening doesn’t have enough power to affect my grandmother directly: only she can decide whether it matters to her or not. It is only by finding a way to speak to what matters to her (religion, family, Indian food, match-making, bargain hunting…), only by connecting with her identity, that she can actually be “inside” the happening of bingo.
Until then, she’ll hear the bingo sounds. She’ll hear me encouraging her to play. She’ll see people hobble around the tables. Stamp the cards. But none of this will feel like it’s happening to her.
Saturday, October 1, 2011
It’s easy to dismiss architecture, especially when job losses and the talk of pandemics turn us inward toward our immediate needs. It’s easy to conceive of spaces as existing for us to carry out our comings and goings, solely there to fulfill our needs.
This view is epitomized at Bay and Wellington by the Toronto Dominion (TD) Centre, conceived in 1963 by a titan of modernist architecture, Mies van der Rohe. With its simplification of form and the elimination of ornaments, van der Rohe’s giant rectangles of uniform black steel capture the modern world’s obsession with utility. The building announces itself: “I am a thing that people work inside; nothing more, nothing less”.
The TD Center embodies the view that one should not get “caught up” in the aesthetic of a building. A building should forever be in the background of the work we do inside it. But might this view be hiding something? Might structures and spaces have secret powers, secretly encouraging and discouraging us?
Men with full bladders know well the experience of being “demanded upon” by the design of a space. The placement of male urinals in most restrooms requires, nay, forces me to be comfortable with peeing inches away from other half-naked men.
Open concept tables at the Toronto Reference library enforce the “silence is golden” rule by ensuring you disturb other patrons, who glare at you from across the table, if you try to talk.
The way design affects us can be subtler, quietly shaping the possibilities we feel are open to us. Consider the slab of concrete called Dundas Square: it is naked to its surroundings, making visitors vulnerable to traffic noise and the messages of gigantic illuminated billboards inspired by Blade Runner (and Times Square). It is easy to imagine the possibility of a first kiss arising on the grassy lawn, among the oversize chess pieces, in Montreal’s Berri Square (or Place Émilie-Gamelin , its official name). We might call Dundas Square a meeting place but in truth, it almost prevents social engagement as it lacks the intimacy required for getting to know someone. On the concrete, among the car horns, romance isn’t impossible, but it’s not anywhere on the horizon.
the "not yet" in the "yet", or Driving to the Dry Cleaners with my Grandfather on a Wednesday Afternoon
"it's in the past", we say, by which we mean, "it's over and done with".
but if my experience of my grandfather driving me to the dry cleaners three days before he died was wrapped up once i hugged him goodbye, then it seems hard to explain how I can, in the present, open back up that time to see it anew. there was something very significant happening that Wednesday afternoon, even though at the time i was mostly caught up worrying about a conference paper.
time has passed. the details less vivid. yet somehow I see more clearly: for the first and last time in his history, he removed all the images and expectations that typically mediated our interactions: my grandfather and i had coffee while we waited for my suit to be altered and he talked to me like i was another human being. such an unexpected and rare thing event. i recount the story to his children and they think i'm lying.
what i experienced that day was all there was to experience: there was only ever going to be that single time my grandfather inspected my suit carefully, watching as tailor measured me. on the car ride home, he gave me advice about travelling to London. he used particular words in a particular order. i responded in the way that i did, and will never be able to respond otherwise. the weather was sunny, not rainy. these aspects of the past are determinate, and yet, even then, i didn't experience that Wednesday with my grandfather as a closed case. it was unlike, say, the experience of math puzzle: once I figure out that 2 + 2 = 4, and not 5, i don't feel as if there is anything else to figure out. i know what the future is going to be like when it comes to the issue of what happens when 2 and 2 are put together.
on that Wednesday 4 years ago i had to already be experiencing the car ride to Richmond Hill, my grandfather negotiating the price, the three sugars i put in his coffee with the implicit realization that everything i was experiencing was open to being seen from other sides - even if i didn't notice this particular dimension of my experience.
i had to be implicitly alive to the way I was, on that Wednesday, here, with my grandfather, and yet, my "here" wasn't entirely all "here": I was inhabiting the situation only from a partial side. Only from the side of my stalk character grandson, who obliged his very determined grandfather to drive to Richmond Hill just because he happens to know some dry cleaning guy. It took a lot of other experiences - his death, seeing his childhood photographs, going through his old ties, taking up his role of caring for my grandmother - to make me see that Wednesday afternoon for what it really was: his final, yet open-ended, hug whose meaning will last me until i die.