Life expectancy is, at its core, a statistic, right? It is defined as the average age a person is expected to live based on how old that person is today. It can be used to show improvement over time or the need for improvement still. But for many with cystic fibrosis, life expectancy isn't an abstract statistical concept. It has great emotional impact -- and that impact isn't necessarily positive.
The term once held a deep meaning in my head and heart. My life expectancy was about 9-10 years when I was diagnosed with CF in the early 1960s.
As a little girl, my mom would take me from our home in New Jersey to a CF specialist in New York. Once on the way home, I overheard my mom, aunt, and uncle whispering about how long I was going to live. I was about 8 years old and would sit on the floorboard of the car as we drove across the George Washington Bridge. I was so scared of heights -- the fear of the bridge was foremost in my mind -- and what my mom was talking about seemed unimportant at the time. But, although I might not have been paying direct attention to what my family was discussing, it did sink in somehow, unconsciously.
Life expectancy had a heavy, negative energy looming in the background, and it had a profound effect on how I viewed my future -- or if I even had one. To the outside world, I was a happy, funny 8-year old girl -- and honestly I was. What the world didn't see was the young girl who worried about her future. How many more school plays will I miss? Will I get a chance to sing onstage? Will I graduate high school? Will my parents let me go to New York City to dance on Broadway?
I tried to counter those thoughts by being competitive. I enjoyed running and other athletic pursuits. I still brag about receiving the Presidential Physical Fitness Award at 12 (I crack my husband up when I relive the story). But that expectation about a limited life span was always there, and I allowed it to have a negative impact on the way I took care of myself. I was lying about being compliant.
After developing type 1 diabetes and not following my treatment plan, I landed in the hospital a month before my 18th birthday, doing poorly. "Wait a minute," I thought to myself. "I'm going to be 18? I wasn't supposed to live this long." Was I already out of time?
The doctor sent a social worker to encourage me, telling me a cure was coming within 10 years. “You've gotta hold on,” she said. That didn't help.
I had many aspirations back then: joining Greenpeace, moving away from home, going away to college, being on Broadway, traveling, marrying, having children, and saving the world. As I lived past the life expectancy of the time, I wondered if I was really living.
As people congratulated me for having made it “this far,” I became more conscious of the life expectancy number not connecting with my life experience.
After a lot of looking inward, praying, and counseling, I realized that when I was a little girl, the term had sunk its roots in deep, which I needed to sever. I thought, "Jeez, almost everything has a life expectancy, but I'm not a refrigerator whose replacement I need to budget for." I began to think, "I can't live like this -- and I do mean live."
When speaking at fundraisers, I use the term life expectancy. Let's face it, that pulls on a donor's heartstrings. Keeping abreast of the numbers is important for fundraising and awareness, but it doesn't have the same negative energy it use to hold over me. Not because I've surpassed that number, but I have learned and lived that stats are just stats. Statistics are impersonal. They are about “people with CF,” but not necessarily me.
As I meet young people with CF through social media, parents, or working with the Bethesda office, I am on fire to help remove the stigma of life expectancy that some believe is their destiny. In my life it showed its face as that, but I showed it who's boss. Last month, I celebrated 28 years of marriage and watched my 2-year-old great-niece play soccer.
Living life with CF is complicated, to say the least. I didn't join Greenpeace, but I do take care of the environment. I danced on stage at 40, and I'm still trying to save the world. My hope is for people with CF and all who love them to never let life expectancy get in the way of living life.