No Amount of Time With You Would Be Enough
Living with chronic illness & extending the human lifespan
“We’re all here together, AND WE DON’T KNOW WHY.”
― Jenny Odell
How would you live if you knew you only had a short time? How would things change if your life was unexpectedly elongated? Julia Rae and Somer Love talk about editing their dreams to fit with new reality. Not only for people with CF but potentially us all with the advent of CRISPR. If you knew you would live longer or shorter, what would you change? Who would you be?
I didn’t know about Cystic Fibrosis really until my daughter Margaret was born with it in 2019. When she was diagnosed, they told us NOT to google it. That the treatments were changing and the future for M was unknown but extremely hopeful.
This week, I invited two of my idols, Julia Rae and Somer Love (two adults living with CF) to chat with me, selfishly, because I wanted to hear how they were doing. I also have been having a hard time myself dealing with the uncertainty of life (I cry through this whole interview) and wanted some hope that I knew both of them could provide simply by the fact that they are getting older.
I wanted to hear from them about what it was like being told that their life would be dramatically short, filled with medical interventions, and then now having to rethink their lives because of the recent drug advancements.
Time and clocks seem to be all around us in the natural world, part of us on every level, including our cells. Each cell has a clock that fades around the same time, ages and eventually lets go. For people in the US, generally speaking, our expected lifespan is in flux. It basically doubled from the 1920’s to 2020’s. People are now saying that we should be planning on living beyond 130 with several life-elongating therapies and drugs on the horizon. Along with ending things like poverty and maternal fatality.
This is a super hopeful interview, both women are choosing to live in the moment, follow their dreams - Somer’s is to help parents and kids with CF and paint, and Julia Rae is moving to Nashville to sing and write music. She also stars in her first feature film that comes out next year.
Getting old is a gift - no one really knows how long we will all be around, but I am feeling hopeful for us all today. And the future. How are you doing today?
Fine
I’ve been thinking about this topic a lot lately. I read something Joseph Campbell said about (summarizing) witnessing your body go like letting a fender fall off an old truck. But I kept thing how do you do that if you’re in pain? It’s hard to write while in pain. It’s hard to parent in pain. It’s hard to think while in pain.