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What 'Fulfillment' Means to Me as a Person With Cystic Fibrosis

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I live my life by this motto: “Because I live and breathe… fill in the blank.” Anything can be written at the end of this sentence. This means anything is a possibility. I’ve not always viewed life in this way, but through maturity, experiences, gaining self-confidence, and finding my identity, I have come to believe in, and to live, a fulfilled life. Fulfillment to me means to achieve a dream, to pursue a passion, to strive to be happy every day, and find joy in what you do. To say you did your best and you made every moment count. That is living a fulfilled life. Everyone’s best and everyone’s dreams are vastly different. The importance is finding the fulfillment of the dreams you want, not what you think you should want or what society has deemed worth achieving.

I believe having those dreams and feeling fulfillment comes from motivation. Motivation to do and to be better for whatever parameters you set for yourself. My motivation for life comes in the most innate form, which is the will to live — to live the fullest life I can in the time I am given to live it.

Having cystic fibrosis has shaped me to want to live to the fullest each and every day without letting time go by that I couldn’t get back. My motivation to do this has grown with each passing year, and especially, most recently, as I’ve felt the effects of my disease more than ever before. In a way, it has scared me, but from that fear, I feel I’ve grown to have an even greater will to go on and to have an appreciation for the life I have. I’ve come to realize there is a lot I want to do and to achieve, and though my time may be more limited statistically than the average person’s, it certainly won’t deter me from striving for even more.

Over the past year, I have struggled with lung infections which have required me to be on constant antibiotics, either oral or intravenous. During these episodes of infection onset, I have required using oxygen. As of most recently, about three months ago, I developed a collapsed lung which persisted, and finally after about six weeks in the hospital on and off waiting for it to heal, I had surgery to fix the collapse. This will hopefully eliminate this issue completely.

Prior to this episode, I was working, participating and organizing after-work social gatherings, as well as exercising on a treadmill five days a week and practicing yoga at a studio. I want to continue to be able to participate and do things on my terms and not be at the mercy of the functionality of my own body. I am a young woman in the prime of my life. I should be able to make spur-of-the-moment plans with friends and stay out a bit longer than I probably should without having to worry about the potential health consequences.

I have come to realize, however, especially after this recent illness, it requires more and more effort to keep up, and no, I can never let my guard down. I feel weaker and require more rest. Spending close to two months in a hospital de-conditioned my body in a way I never felt before. At the time of discharge, one flight of stairs, unthinkable. Even now, it’s an excruciatingly slow climb. That’s both literal and metaphorical. I have always been one to adhere to my treatment regiment, and now I know I will have to work even harder and for longer to try and regain the strength I had, but I accept it because I have to. I have to because I want to live and breathe as normal of a life I can.

And you know what? It’s incredibly frustrating at times. I’m not going to write this without an underlying hint of discontentment. It sucks knowing I have to work extra hard each and every day just to maintain my health, and maybe just maybe after several months I’ll see a fraction of improvement, if I don’t catch a cold or get ill in the meantime. I’ve thought about the fact that my disease is progressing and will only get more difficult from here. I have the drive, the motivation, and potential. It isn’t primarily my fears, my insecurities, or my doubts that hold me back; it is my physical body. This frustration isn’t constant; it ebbs and flows, and as I build some strength from this health setback, I know it will become a less significant thought. I also have started redirecting my focus and deciding to write more personal stories, which I gain fulfillment from as well. If in the long term, I won’t be able to continue my job and doing as many activities outside my home because of failing health, then I will continue to achieve fulfillment in other ways, through writing and interacting more within the cystic fibrosis community.

The message I want to get across is that although I have limitation physically, and it’s hard to accept a progression of this disease, I won’t let it hold me back from being happy, feeling accomplished, and staying motivated. I won’t let it also limit me mentally. It’s futile to waste energy on being sullen and wishing for it to be different because this is the life I have been given, therefore I shall make the most of it while I can. I won’t dwell on the possibility that I won’t ever make a full recovery from this setback. Instead, I try to be hopeful that I will.

I feel as though many people get caught up in insignificant details about life. People dwell on past mistakes, wishing for changes to occur without really acting and lacking the motivation to make a change, and because of this, they lack a feeling of happiness in their present lives. Most are inhibited by fears. Fear of judgment, fear of failure, fear of the unknown, fear of hurt. These are all rational fears, but they don’t help us achieve our dreams, our happiness; rather often they hinder us. Precious time is wasted dwelling on the past, regretting, or wishing for future ideas and moments that seem impossible to achieve. Instead, try and focus on the present and what can be done now to live a life of happiness. I believe happiness determines the quality of our experiences. Having a deep-rooted sense of happiness about yourself and who you are can determine the quality of life, where we can “smell the roses,” being truly active in every moment.

Most of the population doesn’t face their own mortality in a way individuals with a chronic or terminal illness do. Therefore, can their will be as strong? Not having the knowledge that one day a specific disease will be the ending in a way is a less burdened life. Concurrently, a person will often take the moments, days, weeks, and years for granted, just floating through life without the drive, without motivation, without finding purpose. People believe they still have their whole lives to one day “figure it all out.” I certainly believe there are many individuals without significant obstacles in their lives who also live life to the fullest, but I think there may be a higher proportion of those who face extreme adversity and rise above with greater will. I encourage not just CF patients, but everyone, to find motivation which leads to fulfillment in every day. Find happiness in yourself and in others around you. Don’t be fearful to love to the fullest, to be bold, speak your mind, and let others experience everything you are — to bear your soul. This way, you won’t have any of those regrets, for you lived the best life you could.

I fight every day, for one more breath, to accomplish one more thing. Living… that’s my motivation. I hope one day I will breathe deep once again with fully functioning lungs by receiving a double lung transplant, but for now, I am coping, accepting, and being fulfilled every day… because I live and breathe.

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Photo via Unsplash, by Jake Melara

Originally published: April 25, 2017
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