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.
Categories: Alice's Voice, Living, News
Alice, this is such a wonderful post. Last week, when I wrote about gratitude and Thanksgiving, I didn’t have time (or space) to write about ways to be grateful for the mundane. I mentioned Ann Kertz Kenyo–I actually went on a retreat where she was a speaker, and she said daily, mundane tasks are an excellent time to practice mindfulness. She said that we’re often living our lives mindlessly, operating on autopilot, marching through our “to do” list, not focusing on what we’re doing. We’re distracted, not really present, and she cited studies that multitasking is one of the worst things we can do for our brains. Being present in the moment when we’re doing chores–like you write, “wipe each plate . . . watch my hand move the Clorox over the countertop”–is a chance for that mindfulness and gratitude that scientists are finding can rewire our brains and make us healthier. She said two things I always remember: “celebrate the quiet miracles that seek no attention,” and “live as if nothing is promised.” These are the lessons I see reflected so beautifully in you post. Thank you so much for sharing, and have a very Happy Thanksgiving!
LikeLiked by 1 person
Thank you, Diane. I was glad your post started the Thanksgiving message for me to follow up. Thank you!
LikeLiked by 1 person
This is one of those rare opportunities to use the big words and mean them. Incredible. Amazing. Fantastic. I feel so happy for her and the life that just expanded out in front of her and other CF patients.
I feel the grating of the mundane too but thankfully I suffer from extreme optimism and cannot go more than a day without feeling overwhelmed by gratitude. Mostly gratitude for this little family of mine which I never expected or saw coming but treasure above all else.
There’s also the very real possibility that I just don’t do my fair share of the dishes.
LikeLiked by 1 person
How amazing that your affliction is extreme optimism! I’d like to get there.