Not often do I bring my marriage into full view with my ADDiva audience (not that I have anything to hide, but sometimes it’s just not relevant to ADHD).
This week, however, I want to disclose some very personal information about my husband, and then let him speak for himself.
For those of you who don’t know, Victor, my husband, has cystic fibrosis. It’s an inherited, chronic lung disease that claims the lives of many, many young people. It’s chronic and it’s fatal. He battles to stay alive every single day – with breathing treatments and expensive medications. Thank goodness for health insurance or we would be in the poorhouse.
Through it all, he remains (most of the time) upbeat, funny and optimistic (as well as realistic). So today, I wanted to share a first person article that he wrote for a CF newsletter recently. I hope you’ll enjoy it as much as I enjoy giving you a peek into my “other” life.
“Greetings from the ‘Old Guy.’ It is my goal to move the treatment of CF patients out of the hands of pediatricians and into the hand of geriatricians!
As a way of background, I am a 67-year-old deltaF508 homozygote CF patient who has seen enormous advances in the care of CF since I was diagnosed at Vanderbilt Medical Center in 1963.
When I was diagnosed, I had no idea what lay ahead for me. Most of what I read or heard was pretty grim, but I plugged along any way, taking my prescribed medications and treatments and seeing my doctors on a regular basis.
55 years later, I am working full time (as a lung disease specialist), with no plans to retire in the near future. For many years I wanted to be the first CF patient to die of a heart attack. Now I have amended that goal to be the first to die of old age!
What do I tell my friends when they ask me about CF? I tell them that it is a nuisance. That’s my way of putting CF in its place: to describe it as a fatal disease give CF too much power over me and my life. That doesn’t mean I ignore the disease. I do what is necessary to take care of myself. Instead it means that wherever I am going, CF is in the back seat, not the driver’s seat. I make sure that CF does not define me.”
Those are some pretty powerful words that apply not only to cystic fibrosis, but to ADHD. Our ADHD does not define us, but we take care of it so we CAN drive that car/life in the direction we choose.
Thanks for the reminder, Victor. Love you madly!
You do an amazing job of keeping CF in your back seat or rear view mirror! IT FOLLOWS YOU! It doesn’t lead you around by the nose! I hope to see you again soon!!! Stay well as you can! ?
Wonderful reminder! I probably let it define me too much! Love and hugs to you both,
Amen, Victor! Love the ” keeping it in the backseat” idea-
Really nice blog. My cousin has CF and she just turned 50. I also know a 75 year old ( she had a lung transplant). Best to you all!
Hi Victor & Linda,
I like the way you said that you put CF in the back seat and relating that to ADHD. I try to do the same (with ADHD & GAD). Victor, you have a good attitude & outlook on life. 67 and living with CF, heck you’ll be 87 and living with CF!
I included below the website of the Annual Joey O Bocce Classic which raises money towards finding that CURE for CF. The bocce classic is held at Cardinal Gibbons High School in Raleigh during the last weekend in April. I just thought that you might like to see the website.
(Joey is the son of a friend of the family.)
(I was at your home for an Addiva meeting about a month or so ago. You had a great taco salad that night.)