Six Words: Oppose, Intensify, Banish, Border, Terminal, Definition
When I was a junior and senior in college in Chicago, a fraternity brother, Neil, was dating a cute, thin young woman named Bobbi. Bobbi often had a cough, and occasionally was ill for extended periods of time. Neil was a year ahead of me in school. I didn’t know him or Bobbi well and I was focused on school and ping pong and my own social ineptness.
I think it was right after Neil graduated that I heard that he and Bobbi were getting married – and that his parents were not happy about it. I’d never heard of Cystic Fibrosis, and didn’t know the definition, until I found out that that is what Bobbi had and was the reason that she coughed so much and was ill so often. CF is like an evil border, but this one doesn’t fail to pay rent or steal your things. This one takes over your lungs. Bobbi had lived to be much older than most people with CF and the effects on her body were intensifying. She would not live much longer and Neil wanted to marry her while he could. His parents, like everyone that knew her, were fond of Bobbi, but they knew that CF is a terminal disease and they opposed their son becoming a young widower with other opportunities and a long life ahead of him. Neil and Bobbi did get married. Bobbi died shortly after.
Eighteen years later, in the early 1980’s, we belonged to a synagogue in Richardson, Texas. I learned that a family in the synagogue had two grade school aged children that had CF. CF is an inherited disease. For Caucasian-Americans, the chances of being a carrier are 1 in 29. If both parents carry the defective gene and a child gets the gene from both parents, the child will have the disease. I think those chances are one in four. In this family, both children had CF. I couldn’t help but wonder why, after they had a child with CF why they would take a chance on having a second child. And I couldn’t help but wonder what I would have done in their place. And wonder if I was mean for even thinking that they shouldn’t have had a second child. We didn’t know the family and they didn’t know us. I think that both of their children did die young, and I can’t imagine what that was like.
Last Sunday I read an article in The Atlantic about progress in treating CF. In 2012 a drug became available that was effective in treating about 4% of people affected with CF. In 2019 a new drug, Trikafta, was approved that eliminates the symptoms in 90% of the people with CF. The earlier you start, the more effective it is. CF can be detected in the womb and affected infants can begin treatment before they’re born. All 50 states screen newborns for CF. The drugs still don’t work on everyone and they’re not a cure, but for those where they do work, life expectancy is now about the same as for the rest of the population! The Atlantic article focused mostly on one 36 year old woman. She had grown-up thinking that everyday might be her last. Because she could start taking Trikafta as soon as it was released, at age 32 she found out that she may lead close to a normal life span. Suddenly she had to start planning for tomorrow and tomorrow and tomorrow, what should would do with this new life, and how to pay for a lifetime of tomorrows!
In 1965, about the time that I knew Bobbi, four year old Ricky Weiss heard his mother making phone calls to raise money for Cystic Fibrosis research. He told her he knew she was working for Sixty Five Roses. Occasionally you may get something in the mail about Sixty Five Roses. It’s from the Cystic Fibrosis Foundation which funded the research to treat CF and works to banish it. Each year when I donate to Sixty Five Roses I think of Bobbi.