"Stayin' Alive or Freedom 55?" by Erin McCaw
Stayin’ Alive or Freedom 55?
The fact that I was seven years old when this disco classic came out means two things:
1) I am pretty old
2) I am super old for someone with CF!
I thought turning 50 was going to be momentous and weird but it ended up being one of those pandemic birthdays that seemed kind of surreal. Last weekend I turned 55 and that was more than surreal — such an impossibility felt like a slip through a wormhole into another freaky dimension. Mind you, everything about our world feels that way these days as everything about our times seems to get crazier.
So yeah, 55 with a CF diagnosis in 1979 when doctors told my parents that my sister and I might not make through high school. Then at the end of high school the head CF doctor at CHEO here in Ottawa told me that she thought I could maybe make it to age 50. Everyone thought that was completely preposterous and there were a number of times when that hope came close to being derailed but along came better antibiotics, better inhalers, Pulmozyme, Kalydeco, and then 50 did happen! Just as I was declining again along came Trikafta. Trikafta has been far from a perfect medication mind you. Kalydeco wasn’t either. But those “just enough” boosts are big part of why I’m still around, particularly if you take into account adding a lupus diagnosis to the list at age 42.
Other things make this age feel bizarre, the kind of things that I never expected to be able to experience such as feeling a bit blah about birthday parties. Having birthdays with CF comes with a notion that each one should be celebrated with much fanfare and meaningful discussions about the combination of resilience and luck that has led to making it one more year. The thing is, as I’ve grown older I am just not as invested in marking the occasion. Not in the same way that some people dread and then resent aging but just in the way you don’t need to have people make a big deal of you every year. A quiet dinner with a few people, getting phone calls, maybe seeing a nice view are all that I want. And cake. I do need cake. I don’t have a single friend my age who wants anything more than that. I am different from my abled friends in one respect though; I don’t complain about getting older and instead recognize that I am incredibly lucky to do so. Which calls to mind another aspect of being 55 with CF, the sorrow and guilt I feel every time I learn of the passing of those who are much younger. It is hard to accept that I am one of the last ones of the group of CF patients at the adult clinic from the late 1980s and early 1990s. The only other person I can think of who is left is my sister. So for a long time now each birthday I have brings up “why me” questions, not out of complaint, but out of confusion. For all that we know about CF there are always mysteries in how it affects each of us differently. And of course the question that goes along with that is the one that I dwell on more and more — “why am I here?” Not an unusual thought for most people in more-than-middle age but a particularly biting one for someone who has an illness that has gradually taken so many of the things that I believed to be my core identity and purpose. Birthdays used to bring “wahoos!” But now they bring life reviews: Was I as good of a friend as I could have been, did I try hard enough to find another job when I stopped being able to teach, could I have lived on my own instead of moving back home, what if I had gone out with that guy who asked me out every week instead of the ones who always ghosted, what if I had moved out west, is it too late to get my blackbelt?
There are also aspects of reaching middle age that people with CF are just now coming to terms with that we never had to consider before. A big one is the likelihood of outliving our parents and of needing to care for them as their health declines. The idea of caring for aging parents is kind of scary if you yourself need a lot of help to stay healthy. I’ve come to realize that it will be a privilege to be able to help the people who put so much effort into keeping me alive but what if my health prevents me? Aging has also meant coming to terms with never being as “successful” as my peers in terms of careers, health issues like needing reading glasses, hearing loss, grey hair, and wrinkles! Of all things! Then there is the big one for women with CF as they age: MENOPAUSE. Hormones were never discussed in CF clinic when I was in my 20s on up. Pregnancy wasn’t even considered to be an option for most of us. And now with so many possibly living into their 40s and 50s there are some big questions that need to be answered. What do perimenopause and menopause do to us? Because of a lack of research into women’s health the scientific world doesn’t even know that much about menopause in general let alone for people with CF. What does the yo-yoing of hormones in perimenopause do to inflammation in our lungs and all over? How will Menopause Hormone Replacement (MHR, the new term for HRT) affect medications and bodies? Will our bones be that much worse considering that we will have a combination of causes for density loss? How are changing hormone levels affected by medications like Trikafta? How do you know if your night sweats are from infection, inflammation, or just that wonky temperature regulator that happens with “that time of life?” There are so many things we don’t know about how we will age as people with Cystic Fibrosis.
One thing we do know for sure is that we won’t get a “Freedom 55.” My dad thought it would be a funny joke to ask if I was going to retire and at first I laughed — the thought of me doing the things in those cheesy commercials is pretty funny. Ferraris, lavish golf trips, shopping in Paris, drinking champagne in a resort… these are not things I could picture myself doing even if it were an option. As I thought about that saying though, I realized that the one thing I would like to retire from is being sick and having to coordinate so many appointments, medications, tests and treatments. I will never to get to retire from having CF. The big hope is that with all the new medications coming that one day all the youngsters who have it will experience more and more freedom. How cool would it be to know that the next generations might have full-blown careers, retirement funds, grandchildren, and more time doing the things they love instead of spending hours in waiting rooms every month?
I hope that is the kind of thing I see you all doing if/when I reach 65. So how do you all feel about birthdays? Do you all insist on cake too?
Since we are all here for the love of music, I thought I would leave a little playlist of songs that make me reflect on time passing.
Playlist:
1) Stayin’ Alive (The Bee-Gees)
2) Landslide (Fleetwood Mac, or The Chicks)
3) What Was I Made For (Billie Eilish)
4) Both Sides Now (Joni Mitchell)
5) Do You Realize (The Flaming Lips)
6) Dreams So Real (Metric)
7) Change of Time (Josh Ritter)
8) Heartlines (Florence + the Machine)
9) Back When We Were Beautiful (Emmylou Harris)
10) Your Ex-Lover is Dead (Stars)