How Jackie's Chronic Illness Changer Her Life
Jackie | @pricelessbreaths | April 3, 2018
I was born with cystic fibrosis (CF), a genetic disease that causes extra sticky mucus throughout the body, impacting many of the major organs. Those with CF spend hours daily doing lung treatments and taking many medications. We get frequent lung infections because of the sticky mucus which is hard to clear and causes a decline in lung function and possible, eventual need for a double lung transplant. Throughout my life, I’ve had many experiences that some may never have in their entire lives. Because of all I’ve gone through, my perspective on life may be different than other twenty-somethings.
I’ve learned that everyone has their own story, a story others may not be able to see. Cystic fibrosis is an invisible illness and people who look at me wouldn’t know I have it. I’ve always been open about having CF but it’s not the first thing I’ll tell someone about myself. I don’t believe there is such thing as the perfect life. Even superstars who may appear to have it all don’t have perfect lives. Before passing judgment on someone, remember they also have a story of their own.
June 2016, my life was moving forward. I had a full-time finance job, was going out with friends, celebrating birthdays, and living on my own with a roommate. My health was not amazing but I was managing. I was admitted to the hospital on June 8th, 2016 and on June 13th, 2016 was placed in a medically induced coma. My life changed in an instant that day. My lungs rapidly declined! I soon would be surviving only because of an external lung machine called ECMO and a continuous dialysis machine. I received a double lung transplant on June 21st, 2016, unbeknown to me. After 136 days in the hospital, I moved back in with my parents, was no longer working, and couldn’t go out with friends. I already knew how precious every single breath was; cystic fibrosis had stolen my breath from me for the last 26 years. But when life is hanging by a thread, the reality of how precious life is becomes a reality. Life can change tomorrow or even today. We never know what will happen so remember to appreciate this life and never take a single day for granted.
I live my life to have fun. I have always lived by the philosophy that if something I do takes a minute, hour, or day of my life, I don’t care. When I look back over my life on my last day on earth, I want to know that I’ve had a fun life, that I enjoyed every single day I had on earth. Life should be fun. So many people go through the motions, of what they believe life should be. But the amazing thing about our lives is that we write our own stories. We don’t have to live, what others perceive as, the perfect life. We get to live OUR lives. We get to decide how we have fun and what risks we get to take.
My time is precious. Every single person’s time is previous. Because of this, I try to never be late. And when I am, I start to feel anxious. When we are late, we are, without saying, forgetting about the other person’s time. But the fact that someone wanted to hang out or go to a restaurant or movie is special. We shouldn’t take those times for granted. They’re special times.
Don’t live life afraid of illness. I’ve never been afraid of cystic fibrosis or of death. And I don’t let CF hold me back. To live life afraid of a circumstance means not really living. When I go on vacations or try new things, I don’t think, “Will CF hold me back?” I think, “I am going to find a way to make this happen despite CF.” And most times, I find that way.
This is the life we are given. We can’t change our circumstances but we can change how we manage our lives whether life is throwing rocks or rainbows. We must make the best of what we have and learn to adapt. If being in the hospital prevents me from going to dinner with my friends, I will have them to the hospital for dinner. And when life is throwing rainbows, shower in them and take advantage of those good days.
Life is not fair. That’s just it. Life isn’t fair. Some people are born rich and others poor. Some are born with chronic illness and others are not. That’s life. We can’t dwell on what is fair or not. Once again, we have to adapt to the life that we were given and find things we CAN do and then enjoy them to the fullest, to have fun.
And finally, I have learned to buy as many shoes as I want. Life is short and shoes make me happy, so I buy them and I enjoy all of them. ☺
Jackie lives just outside of Washington, DC. She was born with cystic fibrosis and received a double lung transplant on June 21, 2016. Jackie enjoys hanging out with family and friends, her dog, Fae, and shopping. Her goal is to spread awareness about cystic fibrosis, transplant and chronic illness.