Me and Mr. Freeze: Why I choose to keep most of my life private
A columnist with CF explains why privacy is important in his everyday life
I am not comfortable peeling back the curtain and letting people see in person what my life is like with cystic fibrosis (CF). I know I write about some aspects of my life with CF, but the audience gets to move on after reading while I must continue living it. That’s as far as I’ll usually let anyone in.
I am comfortable talking about my life, in person or in this column, but I am uncomfortable with letting folks see what my day-to-day life is like. As I get older, though, I’ve found it therapeutic to be more open about my life.
My normal day consists of three Vest airway clearance treatments, over 40 pills, two inhaled nebulizers, six or seven blood sugar tests, and six insulin injections. Is it weird that I relate to a Batman villain?
The first time I saw the DC Comics character Mr. Freeze was in the awful 1997 movie “Batman & Robin,” in which he was played by Arnold Schwarzenegger. The film is undeniably campy and poorly written, but I have a lot of empathy for Mr. Freeze.
He would submerge himself in privacy in a machine that was a cross between a cryotherapy chamber and a hyperbaric chamber. In public, he’d wear a super suit that kept him alive, which was a walking cryotherapy machine. I also prefer to do my Vest treatments, check my blood sugar, and administer my insulin in privacy.
The importance of privacy
Whenever I go through Transportation Security Administration checks at the airport, I’m inevitably stopped and asked to explain my Vest, what its purpose is, and why I’m bringing it. Although I always have a letter from my doctor on hand for the TSA folks, they tell me they can’t look at it due to the sensitive nature of the letter. They say they’d be breaking a rule because they aren’t medical professionals.
If it’s against the rules to read because it’s sensitive, then why put someone like me through the humiliation of pulling me aside and inspecting my medical device? I have no problem doing it for security reasons. After all, I grew up watching the World Trade Center attacks in New York. But there should be some protocol to enable them to do it in private, recognizing that some people may be sensitive to being searched and questioned in public.
Even when I get through TSA, I prefer not to pull out my Vest until I’m in a hotel room. I don’t want to become someone’s sideshow circus.
The loneliness that Mr. Freeze feels from shutting himself off from the rest of the world in order to live is something that I think is relatable to many people with chronic or terminal illnesses. (Hopefully, no one relates to the rest of the villain’s personality!)
My privacy for your privacy
When I was a kid, all I wanted to do was sleep over at my friends’ houses. It’s a part of growing up that many healthy children experience. But I wasn’t allowed to do that due to CF. While I didn’t understand it then, I understand my parents’ reasoning now as a 30-year-old. If anything bad were to happen because of CF, they didn’t want someone else to face a responsibility they weren’t prepared for. That’s why I’m so protective of my privacy as an adult.
When I was in college, I twice stayed in a hotel room by myself during school trips to Boston because I didn’t want classmates to be responsible for me if I had a health emergency. I stayed at my friends’ place only once in college, and of the three friends who were there, I’d been friends with two of them for nearly a decade and the other for close to 20 years. It took years for me to know I could trust them.
Every day of CF can be scary to those who aren’t used to it, and that’s OK. In my opinion, only I need to deal with it. Like Mr. Freeze, I’d prefer to keep the curtain up to the world.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
Another great article Will. Love you
Will, you've written another intelligent, thought-provoking column which even I can relate to although the treatment for my illness is nowhere near as involved as yours. My treatment is limited to 9 pills broken down to 3 pills 3 times a day, a few inhalers and a set of Velcro knee braces. I hate having to walk everywhere with the knee braces and can really imagine what you go through and why privacy is so important to you. After all, why would you want to deal with the vest, blood sugar tests and insulin injections right out in public? I am glad, though, that being more open about it is becoming therapeutic for you. Will, we want for you whatever makes you happiest, so deal with this in whatever way makes you comfortable. Much Love, Helen