I’m Thinking About the Future
Sometimes it seems as if everyone knows what they would do in your shoes, and they are happy to tell you so.
“If I were you,” they might say, “I wouldn’t even bother with college. I’d just travel the world. College takes up too much time.”
There’s nothing like the potential of a life-limiting illness to make people prioritize — except when you’re born with one and for your entire life, you’ve craved what others take for granted.
With cystic fibrosis, it can be difficult to conceptualize the future. It seems so remote, yet it comes too soon. Our heads are clouded with stories tinged with mortality, while success stories don’t seem to garner as much media attention. Dreams can feel impossible and unattainable, so the alternative is to do nothing. Stasis is, at the very least, comfortable and familiar. It holds nothing unpredictable and has no risk. Unfortunately, there’s also no reward.
The average lifespan for a patient born with cystic fibrosis in this century is now in excess of 40 years old. That seems short, yet there’s so much to accomplish, and that number continues to climb. Many young adults with CF who thought that preparing for the “real world” wasn’t for them now face a difficult decision. CF modulators are helping many to stabilize, treatments are improving, and infections are becoming less common. An entire future is ahead of us, but it requires work to get there, and many who were encouraged not to participate in things like school find themselves floundering and at a loss about what to do.
Giving up seems forgivingly easy, but even with a limited lung function, it’s possible to achieve your goals. The key is to seek accessibility options; know that you have limitations, but also that there are many ways to work around them. It’s time to start planning for a future and to stop living in an outdated model of our understanding of cystic fibrosis. There’s nothing to lose and everything to gain.
Just by making plans for your future and your career, you gain confidence and assurance. You have something to work toward and to think about apart from your health. It doesn’t even have to be a traditional desk job — work on art, sports, hobbies, or crafts. Just don’t remain under the assumption that there’s nothing in your future to work toward.
Adulthood and cystic fibrosis still need further discussion. As the population lives longer and longer, things like work and school will need to be discussed. Until they are, it’s up to us to forge the way and show that CF is so much more than just a childhood disease.
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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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Comments
Mark Tremblay
This is Mark Tremblay and I’ve commented on News Today articles before, but I have spent over 40 years contemplating this topic. First, let me say I was born in 69 and diagnosed in 70 so I remember mist tents, my mom pounding on my chest for hours every day and digestive enzymes that didn’t just digest food. In fact when I was young nearly all the kids at the clinic were either very sick or dying. Consequently, I lived by the moto better to burn up than fade away which led me down a dark path of drinking and legal trouble. I finally went to rehab and got sober at 18 which meant I had a second chance at life even though at the time I assumed it would be one of progressive suffering particularly since I wouldn’t have alcohol and drugs to block the pain. After rehab I lived in a house with people in recovery and attended outpatient counseling so I decided I’d pursue a career in drug and alcohol counseling which only required a six month certification. However, even though I set my sites low and realistic as my life with a terminal Illness taught me I ended up one day at a time incrementally going to college for another year and then another and eventually ended up getting two masters degrees, running an inpatient and outpatient drug and alcohol treatment center, starting two successful businesses all while waiting to get too sick to do anything. And now decades later the moment I have waited for my entire life - that many of my friends did not survive to see (whose guilt I carry) - has finally arrived. With a little less than 50% lung function left I am still on the battlefield and the frontline is beginning to push back in the other direction. However, looking back on a life of what happened to me while I was waiting for a cure or death I kind of missed setting goals and actively choosing a path for my life. I lived my entire life in the hourglass watching the sand slip beneath my feet instead of out the glass. Had I have known I would still be fighting let alone have around 50% lung function at 50 years of age I would have been more intentional with my blood, sweat and tears. I would have set my sights higher, I would have tried to inspire more people and instill more hope instead let depression so many times get the best of me. So if I had one thing to say to all the young folks with CF it’d be to dream big and live the life you value not merely the life you think is realistic in light of your CF. Most importantly find your faith early so that when the waves of life come crashing in and uncertainty is blocking out the sun your hope will burn through the clouds and shine brightly on your face even as the battle rages. Don’t look to the left and to the right at how unfair your life’s been but release your omnipresent fear of death and choose to live the life you love and even if you miss and end up disappointed you will have spent a lifetime following your heart which is so much more rewarding than all those folks to the left and to the right that take very breath for granted!!!
Anne Wright
Being in my 50s with CF was not something I ever expected, but here I am. Not bad for someone whose life expectancy at diagnosis was early teens at most. Retired now because of declining health, but enjoying retirement and all the opportunities it offers when the commitment to working for a living is no longer required. It would have been easy over the years to give up trying but it was never really an option for some one who just wanted to prove myself as good as the next person. So remember the motto which I think ought to be ingrained in everyone with CF “Dum spiro spero” - while I breathe I hope.