Tag Archives: Cystic Fibrosis

Day 211: Beau Club Bob

3 Nov

Today when I was preparing my pie, I thought of Bob from the Beau Club. We’ve known Bob and his wife Annie for more than 20 years having met them when we worked at Geppetto’s restaurant. Bob was (and still is) the owner of the tavern that was right next door to the restaurant. After work we would often go to the tavern to have a drink and play cribbage and listen to the juke box. Sometimes we might even play a game of pool. It was a comfortable place to unwind from our kitchen or wait shifts.

One memory I have from those days is from when I organized a 5 mile walk to raise money for Cystic Fibrosis that asked people to get pledges per mile walked. When I asked Bob if he would sponsor me, he took the form and wrote $20 in the per mile box. When I explained that maybe he meant to make that the total donation, he confirmed that he knew it was per mile. I could have hugged him because it was such a generous thing to do.

It’s been a long time since I’ve been to the tavern, but I still see Bob around town, and he always makes me smile for a couple of reasons. The first is because Bob always seems happy to see me and asks about my family. The other is because Bob is one of those quick-witted folks that can make jokes out of an ordinary conversation and he helps to keep me on my toes.

Today I brought Bob a warm Apple Pie to say thanks – for the fond memories from those long ago days and for being the generous gentleman that he is.

Day 205: A Parent’s Worst Nightmare

28 Oct

When I was a toddler, my parents had a baby girl. She was born in February of 1958 and she died seven weeks later, in April. At the time my parents were told that she had pneumonia but is likely that my sister had cystic fibrosis which was not an identified condition at the time.

Even though I knew that it was hard for me to imagine what it must have felt like to lose a child… and it wasn’t until I had my own baby that I knew how much they lost. It has to be the worst nightmare for a parent to endure.

Recently I was told of a woman who lost her child to another illness – one that is marred by stigma as much as by the damage it does: bipolar disorder. The child lost was not a toddler, rather she was an accomplished scientist and an avid outdoorswoman. But somehow the diseases darkness overcame the light that she brought with her and she lost her battle with this terrible demon.

In the memorial pamphlet her sister wrote a wonderful tribute to her, highlighting her sister’s accomplishments and the challenges she faced with her illness. She finished the tribute by saying that she knew her sister was now free from pain… and that she hopes “that her death will give voice to an illness that is strongest when the victim is silent.” My wish is that we find a way to fight this evil illness and save those dear to us who are plagued by it.

Day 83: Nancy

28 Jun

Today is my sister Nancy’s birthday. If you are old enough to remember, Frank Sinatra sang a song about his daughter Nancy. It was called “Nancy, with the laughing face.” That was my sister. She was always smiling and making jokes – and she had little reason to laugh.

Nancy was born with a lung disease called Cystic Fibrosis, but at that time the disease was not yet named. My parents were told that she had asthma and that’s what we all believed to be true. Nancy’s breathing at times was labored and when she became upset, she could become sick. I was actually jealous of Nancy when we were told that we could not leave the table until we finished (whatever it was) and then she would begin to gag and toss up whatever we were being “forced” to eat. “Gee” I wondered, “How do you do that?” because I always had to stay at the table and eat, while Nancy was excused.

We did not know that Nancy had CF until she was about 15. Until that time, her ENT (ear, nose and throat) doc was treating her for sinus problems! For the record, he never spoke to us after Nancy was tested for, and diagnosed with, CF. I really never forgave him for that.

Back to Nancy. She was not supposed to have children because it was too much of a risk. But for Nancy, not having kids was a much greater risk. I am sure that she wanted to leave a legacy because she knew that her time here was limited. She raised two boys, Jimmy and Wayne, and they were her reason for living. She was so proud of them… and I think now I know that she knew she would live on through them.

The last time I talked to my sister she told me a joke: A woman goes to the doctor and says,”Every time I sneeze I have an orgasm.” And the doctor replies, “And what are you taking for this?” and the woman replies “Pepper.” It was so like her to make me laugh at a difficult time – for Nancy was getting ready for a blood transfusion. And, unfortunately, it was too much for her ravaged body to handle. At the young age of 34, we lost Nancy.

One of her doctors asked my sister and me if we would consider donating Nancy’s eyes – for they were not damaged by her disease- and could help someone see. One solace in losing Nancy, is knowing that someone has gained their sight. And if they also had Nancy’s eyes, they would be beautiful.

Today, in honor of my sister Nancy, I brought an Apple Pie to the Pulmonary Consultants of Medford, for they help people who have Cystic Fibrosis. I wanted to thank them for helping their patients who are suffering. It is my fervent wish that this disease be eliminated.

My sisters Janice, Nancy and Me