On Cystic Fibrosis and Birthdays

In the 1950s, life expectancy of a CF child was 5 years. In the 1970s, CF patients were expected to live less than 20 years. By the 1990s, life expectancy was 30 years.” (www.associatedcontent.com/article/1106012/cystic_fibrosis_or_systic_fibrosis.html?cat=70)

“Cystic fibrosis is a genetic disease that frequently has its first health impact in infancy. The disease often progresses through childhood into young adulthood, with death usually occurring as a result of pulmonary complications. The average lifespan has been steadily increasing, with a mean life expectancy of 30 years by 1995.” (www.atsqol.org/sections/specific-diseases/cystic-fibrosis.html)

Today is Tu B’Shvat, which also happens to be my Hebrew birthday. And today, I am 30 years old.

People mark their lives with many milestones. First day of school. Graduations. Getting married, the birth of a child. I’ve seen some of those milestones, and am still awaiting others. But two of the most unexpected and hard-won of my life’s milestones occurred with the seemingly commonplace celebration of birthdays.

CF statistics go by the year you were born. For those born in the seventies, like me, fully half of us were not expected to see our twentieth birthday. By the time I was 12 my health was deteriorating, and my own doctors didn’t think I’d live to graduate from high school. But I did, and pushed still further to that fateful twentieth birthday and beyond.

At the time, however, I wasn’t actually aware of how very significant that was. I didn’t realize that CF came with a life expectancy until I was a teenager. I grew up with a different number hanging over my head, for by the time I realized that CF was a fatal illness the median life expectancy had reached 30 years. That was the number on the brochures, the articles, the websites, and that number firmly lodged itself deep in my mind as the age by which I would be dead or dying.

But today, I am 30.

I’m neither dead nor dying, and don’t plan to be either for a long time yet. I am a self-assured, educated young woman. I live independently, nearly 100 miles away from my family. I work full time in a demanding field that I love. I manage my medical needs subtly and competently, and walk through my days with the appearance of any average person on the street.

Yes, there are bad days. Sometimes, there were so many bad days that it seemed they would never come to an end. But end they did, and I know that when bad days come again they, too, will end. I will suffer them, and survive them, and move on, as I have done for the last 30 years. As I plan to do for 30, 40, 50 years more. The statistics only said that half of us would not see a twentieth birthday, a thirtieth birthday. For those born in the United States today, the statistics say that half of them will not see a thirty-seventh birthday. But me? I have no more limits. I’m 30! They never said how long those of us in the other half will live. One of my friends pointed out that by the time I reach each designated age the life expectancy has changed again, so clearly I’m going to live forever!

So many people hide from their birthdays, as if the years that number your life are a shameful secret. What an unfortunate waste of a glorious day! I plan to unfurl the years of my life as the shining banner of victory that they are. Look at me! I am 30! I have been granted 30 years of living, learning, and hopefully growing. I have been granted the unbelievable miracle of continuing to live, learn, and grow beyond these 30 years!

Today is my birthday, and it is a blessing!