How CF Taught Me To Appreciate Life

I am 47 and have cystic fibrosis. Today, I couldn’t be more grateful for this genetic defect. I was born in Mexico City, where the disease was rare and unknown. Diagnosed at age 11 with a life expectancy of 12 years, I learned to live with that subconscious expiration date upon me. I took the news in a very mature way, since my brother was diagnosed a couple of years earlier, and I had read and studied all I could by that time. My parents told me that I said to the doctor: “Don’t worry about telling me; I know I’m sick. I know what that means and what I have to do. I’ll show my brother how to take care too.”

Although I apparently accepted it beautifully, it was something I kept to myself. I never wanted anyone to know I was different. I would never say I was sick or take my pancreatic enzymes or any other medicine in front of anyone. I hid inside myself, having a secret and double life. I let people see someone going out with friends, attending school, feeling happy, talking, and laughing, Only while inside my house did I allow myself to feel terrible — in pain, surrounded by medicine, doing my treatments, lying down, constantly going to doctors’ appointments, visiting labs for bloodwork, and other studies. I kept all that information from other people. They knew half of me, not the all of me. I never wanted to have a boyfriend; first to avoid sharing about my disease and second because who would want to be with a sick person who will probably die? Better to not be exposed than feel rejected. 

When I was in my senior year of high school, I thought I was ready to choose a career in medicine. But, at age 19, I had a pretty tough sinus surgery that had my head open from ear to ear. Plus, I couldn’t move for six months because my joints were stiff and the pain was brutal. I didn’t know then that a tiny percentage of people with CF suffer from this particular symptom. A few months after that, I had acute pancreatitis that had me hospitalized for one month. I was 88 pounds and severely depressed. I spent the next six months recovering. 

That period of pain and recovery was life-changing and challenging, but it gave me a lot of strength. I then decided to study communications. It wasn’t easy. I had surgeries, hospital visits, and many bad days being sick, but I made it. My thesis title was “The importance of interpersonal communication between doctors and patients.” To give you a hint about my experience in general, not all of my clinicians were empathetic and nice.

I was eager to grow old — but never really knew if I would make it — so I learned to live by the day. This mindset allowed me to enjoy everything — the sun, the wind, a hug — and that style has accompanied me throughout my life. As time passed, I also learned that life is a lot of things in many ways, and every person has different activities, goals, and points of view. I learned to give myself the time to rest, and to say no to events and feel ok with it. Honestly, I could never think ahead or imagine more than two years forward. I was terrified by death more than I was afraid of being sick. But, little by little I overcame this fear. I got married. Believing I wouldn’t be able to have children, after three years and a couple of terrible medical experiences, I found a doctor who said I would have no problem conceiving a child, so I got pregnant at age 29. It was the best nine months. I felt amazing! Pregnancy was, without a doubt, the best part of my life. It has been my biggest accomplishment and joy; my now 18-year-old son is my favorite person in the world. 

I turned 30, 35, and at age 40, I started studying again: “Semiology of ordinary life,” which is an educational model centered on knowing oneself. I learned that loss does not exist; what exists is the experience and knowledge of loss, which then turns into gain. I love life! During the five long years it took to graduate, I didn’t know how far I would get, but did it — again! Today I consult online, teaching the best tools for self-knowledge, transforming attitudes, accepting what life brings, and doing the best no matter what.

With academic satisfaction came the peace of mind that helped me put every piece of the puzzle in place, so I am only grateful now.

Being emotionally healthy has had an enormous impact on my physical health. After so many times in the hospital, so many crises, medicines, seven sinus surgeries, depression, and mental unstableness — after living in hell I now live in peace. I’m not afraid of death anymore, and as I said from the beginning, every day is a valuable present.

I enjoy doing different activities, and when I am not at my best, I am thankful to rest and enjoy my bed, TV, pets, and the love of my family, which has been one of the strongest poles. 

My mild CF has given me a chance to live an everyday life. Today I feel grateful for life, my disease, and especially my family. They have been fundamental to surviving struggles. Today, I consider my genetic defect a blessing. It has given me the ability to enjoy the simplest things. It has given me tolerance, strength, resilience, and the gift of joy within myself — being calm and just breathing. We are used to social demands to do a lot. Life is measured in action, activity, accomplishments. As a CF patient, I learned that life is also inaction, being with oneself — breathing, being in intimate contact with my interior, taking the time to think and reflect. So, to live is to be in the fullest sense, inside with no one else except myself. CF has allowed me to do and try things no matter what; if it lasts because I am alive cool; if I don’t survive for any reason, excellent, because life is just a blink, and the universe gave me a lot of “extra” time, so there is no more fear, it turned into motivation, love, awareness, pleasure, joy, and thankfulness. My life is a miracle, my journey a gift.

Interested in sharing your story? The CF Community Blog wants to hear from you.