A few days ago I listened to this great episode of a podcast called Invisibilia. I had seen it pop up a few times on Facebook by friends who had posted about it, so I had opened the link and left it up on my computer for days, waiting for a good time to actually listen to it. Lately my job at the CFLF has been a little intense. We are getting flooded with applications for our recreation grant program, which is amazing, don’t get me wrong, but unfortunately, we're having a hard time meeting the needs financially. Which means we are having to turn people away who are reaching out and asking us to help them fight for their lives. It's been really difficult to say the least. In an ideal world we'd be able to help anyone with CF who was looking to better their life through exercise. When I started working for the CFLF seven years ago, we would get a few applications a month, that grew over the years to be a few a week, and now it’s multiple applications coming in every day. I've been reading through so many people's inspiring applications in the last few months, people just like myself, who have CF, and want to make a positive change in their life, but can't afford to.  Having been on the other side this equation at one point, and having been the one asking for the funding, I know just how badly anyone who applies wants, and more importantly, needs to have their request approved. Anyway, all this is just to say that I've been very busy with work and haven't had time for much else. So, I had this podcast open and ready to listen to on my computer but it took over a week for me to actually push play. And I’m so glad I waited to give it my full attention, because the story is incredible. If you have a chance you can listen to it here:  

It starts by talking about this experiment that was done by a research psychologist named Bob Rosenthal. Who, one night, snuck into his lab and hung labels on all his lab rats’ cages saying that they were either “incredibly smart” or “incredibly dumb”. The next day a group of experimenters come into his lab and he assigns them each a rat. After a few days of working with the rats, they're put through a maze, and the results are overwhelming. The rats that were thought to be “incredibly smart” did twice as well as the rats that were labeled “incredibly dumb”. It was simply due to the way their handlers treated them, through touching, talking, handling them more gently, etc. The experimenter’s expectations of how their rats would do, shaped the outcome of the rats’ performance. The truth is, of course, that all the lab rats were the same, they were neither “incredibly dumb” nor “incredibly smart”. They were just average lab rats. The conclusion of the experiment, in other words, is that expectations can make or break us.

I find this part of the podcast so fascinating when thinking about Cystic Fibrosis, or any huge obstacle that people may face each day. The more we expect from ourselves and the higher we set the bar, the further we will go. In the midst of reading (sometimes dozens) of personal essays each day from people with CF, who have goals that go above and beyond what was once expected for people with CF, I find 

this experiment can tell us a lot about the power of expectations in CF. If you think about it in terms of us being the lab rats, and the maze being CF, we are all trying to find our way through, and the more support we have and the more that people believe that we'll find a way, the better we do. I of course have no scientific evidence to support this, and it certainly doesn't apply to everyone with CF. I was raised by parents who expected that I would survive and thrive despite being told at a young age that I may not. There was never any doubt or hesitation about that. I was also lucky enough to have doctors who felt the same way. In fact, everyone that surrounded me when I was growing up expected that I would have an average, or maybe even above average life. As I read through some of the applications and I hear people's stories, I have to stop and wonder how much of what the people around them expected of them, shaped their outcomes. What if I had been raised by parents who never believed that I had a chance? Where would I be now?

In the podcast, the story then goes on to introduce us to Daniel Kisch who had his eyes removed as a baby due to retinol blastoma (also known as eye cancer). By the time he was six months old he was climbing bookshelves and exploring the world in any way that he could. When he was 13 months old and had just had his second eye removed, his mother made the decision to raise him like a normal, seeing child. His mother knew that it was the best way for him to learn how to live as a blind person, so she let him climb bookshelves, fall down, and bump into things, all because she knew it would help him in the long run. He began using echo location (clicking his tongue) as a very young boy, which allowed him to perceive depth and his proximity to the objects around him. When he entered elementary school, the school told his mother that the clicking needed to stop because it was distracting the other kids and that it wasn't socially acceptable, but she tells them “too bad”, claiming that it was the only way he would learn to be independent. Now as an adult, he can do pretty much everything that a seeing person can, and in some cases even more than the average person. He hikes, and navigates, rock climbs, horseback rides, and most remarkably (I think anyway) is that he rides a bicycle. Although he finds it absurd that these things aren’t expected of all blind people. His mom let him ride bikes and run around just like any other kid, even though it sometimes ended with him getting hurt.  Instead of doing what most parents would do to protect their children, she let him keep doing it, knowing that it was all part of how he needed to discover the world around him. By the end of the show, we’re faced with the reality, that maybe we don’t even need eyes to see, and that maybe blindness is a social construction. Blind people are told they won't do certain things in their lives, and so they often grow up believing they can’t. 

Just like in Cystic Fibrosis, we are told that we can expect to be sick our whole lives and possibly die at a young age, yet people with CF are constantly defying those odds, just like Kisch did with his blindness. In CF, or any kind of disadvantage, it’s the same thing. If the people around us view us a certain way, and treat us that way, then we will eventually end up believing that we are that way. We absorb from an early age the way we are treated and what is expected of us, and this, in turn creates who we are as adults. There is this unspoken (or sometimes spoken) message we are given as young people about what we can and cannot do. 

When I tell people I have CF, I always hope they don’t go home and look it up on the internet. The picture that is often painted is bleak and discouraging. When people are first diagnosed with CF, or when they are old enough to do their own research about what having CF means, and they learn that there is already this set of expectations that is so low, then that person may set their own expectations that low. Just like Daniel Kisch, we have to find our own way through this life, and learn how to navigate the world we live in. That may mean falling down over and over again, but with each new scar we learn something new, and we gain a better understanding of where our boundaries are, and where they are not.

I remember in my freshmen biology class in high school, we were all given a different disease to research and give a short presentation on. I don’t remember which one I had, but I do remember when the person got up to talk about CF, my heart sank as they read all the terrible things about it. Shorter life expectancy, malnutrition, frequent lung infections, reproductive issues, depression, etc. It was in high school, and probably soon after that freshmen bio class that I started questioning if I was actually this person that the encyclopedias and text books were telling me I was. Or if I wasn’t now, was I going to be someday? Up until I was told what to expect, and how I would feel, and the awful things that I would inevitably go through in my life due to having CF, I had never thought of it as anything but this thing I had. As simple as having blue eyes, or brown hair, or two older brothers.  

What if these probabilities were never presented to a person with CF? What if people with CF were raised with the knowledge that they could do anything and everything they wanted to do, and that there were no time restraints, or physical restrictions?  What if we, and the people around us, expected ourselves to have it all? Just like the boy who was blind, we would learn how to live and thrive in our world, and perhaps beat all the statistics, and all the things doctors and researchers said weren’t possible. We would make our own boundaries, set our own restrictions, and those restrictions wouldn’t be based on anyone else’s experiences or expectations but our own. Just like Daniel Kisch did with his blindness, maybe we should look at having CF, not as an excuse to do less, but a reason to do more.

 

Erin Evans is 31 years old and has Cystic Fibrosis.  She lives in Vermont and has worked for the Cystic Fibrosis Lifestyle Foundation for the last 7 years.  To contact her you can email her at erin@cflf.org 

 

Please help support the CFLF recreation grant program by making a donation today.  Doing so will help another person with Cystic Fibrosis live a stronger, and longer life.