I turned 47 the other day. Forty seven! Never in my wildest dreams did I think I would ever be this old. I knew I would make 20. I thought I might possibly make 30. I didn't think I had a chance for 40, and now I'm approaching 50. Fifty!?
Over the years, as I read and learned more about CF, I watched the average life span rise and rise. When I was born, in 1968, the median survival age was 16. For many, many years I straddled the median as it increased. Of course, no one ever made dire predictions to my face, but there was always a number looming in my head. I figured it would catch me someday. Today the median age of survival is in the early 40s, and a good friend of mine told me recently, “You are way past that now!” And now I realize the median age is just a CF statistic and does not mean anything about me, which is great.
I'm a member of numerous CF Facebook groups, and I love it when someone writes, “I am 16,” or 24, 28, 52, “and I am kicking CF's butt!” Every time I read those messages, I get this charge, this feeling of support, this energy to keep on fighting.
To me, fighting means doing all of my treatments, taking all of my meds and doing my vest. It isn't always easy, and some days are much harder than others. But when I see that other CFers out there fighting, too, it helps motivate me to do the same.
My Darkest Days
However, CF is a progressive disease. We all remember friends who lost their fight. And especially as I age, there are many days when CF kicks my butt.
A few years ago, CF started to take its toll on me. I kept getting sick, going on and off IVs, going in and out of the hospital. I could not get a break. Every time I thought I was pulling out of a spate of illness, something new or worse would pop up. I felt defeated and depressed. No matter what I did I kept getting sick. I asked myself if it was the beginning of the end.
Everything came to a head about a year ago, when I developed terrible pneumonia in both my lungs. I was intubated and in the ICU for 2 weeks. I don't really remember much of that time, but I was lucky enough to wake up and get another chance.
Coming back from that bout of illness was not easy. I had to make a choice to change some of my expectations about my life.
I had to let go of things I wanted. My life changed in ways I did not know or expect. I had a lot less energy. I walked much slower than my friends.
Was I happy about all that? No way! But as my friends kept telling me, it was lemonade time! Life gave me lemons. What else was I going to do?
A Silver Lining
First, I had to stop working. I had been a high school teacher for many years, and I loved it. It was heartbreaking for me to walk away, but I knew I needed to put my health first. Continuing to work would do irreparable harm. I had seen too many of my friends continue to work until it was too late.
Second, I got to know my CF care team better than ever before. Let's be honest, we all know our doctors, nurses, social workers, and other health professionals very well. But I was more honest and compliant than I had been before. I made sure to tell them when I was tired or down. I pushed myself more when they suggested more treatments, even though going from twice a day to three times a day was tough. And we talked about it. I worked on the lines of communication. I was used to listening to my docs, taking what they said "under advisement," and then doing what I wanted. I started really following directions.
But as days grew into weeks, I found I had a little too much time on my hands. I had stopped working, and I was getting bored. I had become a professional patient. I realized that if I was going to make it I had to find some meaning, some activity to occupy my time. If all I did was take care of my CF and only do treatments, clean my nebs and see doctors, I was going to lose my mind.
So one day I asked my CF doc if she needed any help around the clinic or if she knew of any volunteer opportunities I could take part in. From that small question, a door opened. She asked me to join a Quality Improvement Initiative Committee, then a clinical trial and then another committee. Once I was healthy enough, she suggested Pulmonary Rehab. Meaning and purpose starting coming back into my life. Suddenly I was busy. Days were turning into weeks and then months.
All these activities did not take away from the fact that my CF had progressed and that I need to take better care of myself. But they did give me a new purpose and drive in life. My life was not over, but a new and very different chapter had begun.