My niece is 22 years old. She has Cystic Fibrosis. Ginny’s life has bent towards a timeline. When she was born, CF patients lived until they were 14. When she was 14, the number was 22. Two months ago the number was 28-ish.
That was then. In the last few months things changed.
If you haven’t heard about it, now is the moment to read some good news out of Washington. On Halloween, The Washington Post reported that a drug called Trikafta was approved for people with CF, turning the terminal illness into a lifelong condition. It’s completely beyond my scope to explain, but it has the potential to make CF something that Ginny lives with for as long as life allows, rather than what she will die from in the next few years. Ginny was approved for the drug last week. She received the prescription this week and started it yesterday before our Thanksgiving holiday together, which starts today.
I can’t imagine what she is going through as she looks out on the now vast horizon of life — her life. For me, the news has changed me. I felt it. I felt it physically reading the Washington Post. I saw it in her shining face on my iPhone. And I realized, Ginny gets to open a 401K.
Managing the mundane is a constant issue for me. The daily stuff makes me grind my teeth and whisper obscenities (ok, sometimes I shout them). I try to find zen in the daily, but mostly I’m just battling my irritation. I have such a beautiful life but as I fill out yet another form for open enrollment, followed by opening Excel for my budget sheet to make sure I can pay the mortgage next week, while using the Walmart Grocery app to order Thanksgiving sides as I sit waiting on my husband’s prescription to be filled — I experience my life as a series of connected irritants. I remember Garrison Keillor once calling life the ‘daily decline of appliances’.
Ginny’s horizon has excluded things like buying a washing machine with a 15 year warranty. Now, these irritants are hope. There is victory in the mundane of the daily. I hope Ginny will do things she’s never had to even think about before — save for retirement, decide on a career, make a career change in her forties, call the plumber on a holiday, fill out tax forms every January.
Take my most dreaded task — doing the dishes. It feels perpetual. It will never be finished. I’ll do them and then have to do them again. At 50, I imagine another 30 years of dishes doing and it makes me want to thrown in the towel. Now, take it in. Breathe it in. Imagine Ginny at 50 years old doing the dishes. She is doing the dishes!
Tomorrow, clean up after the turkey dinner, wipe each plate. Place them in the dishwasher. Soak the casserole bowl. Watch my hand move the Clorox wipe over the countertop. Back and forth. I am doing that. That task is life. My life. Hope and victory.