When dealing with a chronic illness, whatever it may be, there is a degree of uncertainty that can often be blinding. At times, it can seem impossible to see the future.
As a kid, this isn’t really something that would have crossed my mind. Growing up, my teachers and coaches at every level of education or athletics would time and again tell me and my classmates, or teammates, that we are our nation’s future. “You are the future leaders, CEO’s and difference makers that will change the world,” they would tell us. I’ve heard that little speech a million different times, and I definitely believe it. I can point to several friends my age that I know will change the world.
For someone with CF, though, I have to recognize that my future is not in any way set in stone. That stress is magnified whenever I’m sick. I suddenly start down the black hole that is contemplating my mortality.
In order to successfully deal with the disease, I believe that I have to understand CF inside and out. That means I have to know about every single negative outcome that may come along with it, whether that is a new infection, lung collapse, intestinal blockage or any number of other significant issues. I have to know how to overcome any challenge thrown my way, and also be able to avoid some scenarios that I have no desire to address. Quite often these hurdles can be compared to mountains rather than bumps in the road, and they can stand in front of me like an iron curtain.
On the flip side, I have to know how to create a successful environment for myself, so that one day I may have the future that I was told I would have.
I have my dreams and aspirations like anyone else, and while I may wish for “a cure for CF” every time I blow out my birthday candles, I know that will not happen over night. CF impacts every decision I make one way or another; how much money I save out of every paycheck, where I live, when I travel and where to, what I eat, who I allow to enter or leave my life; all of these things circle back to both my safety and ability to thrive with CF. It’s not uncommon for these worries to get in the way of my plans and decision making.
I have learned that the most difficult choices are often the best. I have convinced myself that my self-preservation is the only acceptable course of action, because without me, I can’t have the impact on the world that I so desire.
Here I aim living the dream in college, 2011
It may sound like I live inside a bubble, but that’s far from the reality of it. I could tell you one of a thousand different college stories that would burst that “bubble.” For anyone with CF, going off to college is a risk in and of itself, one that paid off for me. The same will be true for any monumental decision that I make moving forward. It is without a doubt important to live outside the comfort zone, but there must be a balance.
I think the nature of my work leads me to hear jaw dropping horror stories, but I also hear countless more positive tales. A Facebook message from a distant CF connection often brings with it a story that could inspire a room full of 500 people. I try to absorb as much information as possible and turn it around and apply much of it to my own life. I consider myself to be fortunate in that respect. I have endless amounts of support coming in from all over the CF world that continuously teach me how to be a better person.
It is an interesting thought – my future. I conduct many of the interviews for our scholarship program at BEF and I often ask the applicants where they see themselves in ten or so years. It’s not unusual to sense some hesitation from the person on the other side of the phone; after all we still live in a world that considers cystic fibrosis to be terminal, despite rapidly advancing science and medicine.
While applicants do tend to hesitate, I almost always get a confident answer to my question. I know for a fact I would give a confident answer as well, if I were asked where I see myself in 10 years, but deep down there is a hesitation. I definitely know where I want to be in 10 years, but can I close my eyes and see it? Can I visualize myself 10 years from now? Yes, I can, I think. People with CF tend to look at the glass half full and I don’t think that is any sort of coincidence. People who are constantly up against some form of adversity try to find the best in things.
One of a million different trips to the doctor.
I do know that there may or may not be some really challenging situations on the horizon for me, but I plan for the future with all the optimism in the world. To be pretty blunt, I wouldn’t be saving money if that weren’t the case. With that being said, I live in the here and now, and that will never ch
ange. Some people may call me naïve for living that way or negligent for living in the moment like I can’t be stopped, but that’s the beauty of it – it’s my life.
I have more than enough on my plate to keep me occupied. Living in the present allows me to embrace change and constantly adapt to the evolving environment around me.
So how do I prepare for a future that may be completely uncertain? How should people who may not have a guaranteed future prepare for it?
I live and I learn as much as I can right now. Every obstacle I overcome shows me how to overcome the next the challenge. The world isn’t going to stop for me, so no matter how difficult things may be I always keep myself moving forward. I make tough choices and I am honest with myself. I am my harshest critic and greatest ally. I know that I can be better everyday, even when I think I am at my best.
Where do I see myself in 10 minutes, 10 days, 10 months, 10 years? Always doing better.
