Wednesday, November 23, 2011

mopping + kissing + football: Living with Cystic FIbrosis.

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.

Good morning.

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

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.

Thank you.

No comments:

Post a Comment