Striving for Ordinary

(This post was originally shared on the Smart Patients Blog 5/13/14)

“Courage is never to let your actions be influenced by your fears.”  ~Arthur Koestler

Last week I was invited to participate in a meeting in NYC with some of the CF centers in the state. I’ve been traveling more lately than I had ever really intended to as a stay at home mom, sharing our story and journey from awareness to participation, contribution, and finally ownership. I had the great fortune to have lunch with another amazing CF mom, whose children are now in college.

She spoke about how back in the early 90′s, right after the CF gene was discovered, she had created scrapbooks for her children to chronicle the cure that was about to be found. She clipped headlines from the NY Times and Wall Street Journal, magazines articles and photographs about the cure that was right around the corner. She shared her intentions to rent out Veterans Stadium in Philadelphia when they finally announced that a cure had been found.

And then, even with all of that hope, blow by devastating blow the realization came that there might not ever be a cure. The novel treatments that they were exploring weren’t working. The gene therapy that had promised to end this instead ended the life of the first person that it was injected into. The excitement about the discovery of the defective CFTR gene slowly died, as did much of her hope. She ended her scrapbooks and put them away. She’s still fighting, but it’s a different fight now.

When I returned home from my two day trip, it was the middle of the night and I was exhausted. As I always do, I went in to the rooms of my sleeping children to kiss them goodnight before going to bed myself. As I pulled up the covers and touched his sweet forehead with my lips, I could taste cystic fibrosis. He was sweating in his Toy Story pajamas, and a little crust of salt had formed around his hairline. In fact as far back as 1857 a passage in the Almanac of Children’s Songs and Games from Switzerland warned that ‘the child will soon die whose forehead tastes salty when kissed’, an idea that was proven in 1953 when Paul di Sant’Agnese revealed the increased salt content of sweat in people with cystic fibrosis.

I got into bed and was unable to sleep, having just experienced a moment of real clarity. When I’m away, speaking at conference about cystic fibrosis, telling people that we don’t have time to wait, that my patience is not an option, I consider myself all consumed with this disease. But the reality is that these trips, these times away from my home, these are times that I get to live without the disease. I’m not administering medicines or listening for a slight change in his breathing or cough, fighting with insurance, or remembering to pack enzymes or hand sanitizer. I had considered myself to be completely engrossed in the disease when I’m willing to leave my family and take time away to share our story with others… but I was beginning to realize that these trips, subconsciously, were an escape from it.

It was a really humbling awareness, and then it hurt because I realized that I wanted to be away from it all the time. Not from him, but from the disease. I’m happy and energized and hopeful when I’m advocating. At home, I’m working all the time, frustrated and annoyed at how little control I have over the path this disease takes. I started to think about how my advocacy is perhaps providing important balance for me, allowing me to be a part of the disease while separate from it. While this is a healthy escape, the way that I wanted to escape again after kissing that salty head made me feel terrible. I love this family more than anything. I strive for ordinary, but the subtleties that make us extraordinary aren’t invited and add so much complexity. How can something that brings so much joy also bring so much pain?

Balance is important and it comes in many forms. Experiencing these emotions is helping me understand how I can achieve balance. I make it through my days with a humble awareness of shared humanity. While it feels good to run away, ignorance will swallow up the best parts of us. We are all fighting battles and we all need balance.