I laugh a lot at my “brain fog.”
For example, I was trying to explain the following picture to my dad the other day as he was helping me with groceries. Groceries are no longer something I can do on my own.
And out stumbled the phrase “Jesus and his impossibles…” not once, not twice, but three times. I know it’s funny, but I have my own set of neurological symptoms along with what I and my doctor believe is CFS. I have seizures. I did my hair today and will need 7 hours of rest to recover from that much time spent in front of a mirror with my hands in the air. My family visited today. That means I will be spending the next 12-24 hours in bed. It’s neither good nor bad, it’s the way it’s always been. It is NOT fun.
I still don’t know if I will be able to run again or walk at any distance, or do any of those kinetic things that I can only do in my dreams. I am so grateful for how far I have come.
Progress is slow and it is up, and it is down. But I am getting a little better each day. I remember what it was like when I was stuck in that bedroom when it had been months since I had seen the sun. I thought I would die there. But here I am today, with you, and that is a miracle.
I don’t know what would have happened had I not been one of the lucky ones. Had I gotten sick before the internet. Before I found my community. I probably would have taken my own life, as so many others have done.
How many lives could we have saved decades ago if we had asked the right questions? How many lives could we save today if we decided to make a real start?
If we don’t change our institutions and our culture, we will do this again to another disease. Doctors, scientists, and policymakers are not immune to the same biases that affect all of us.
We need to think in more nuanced ways about women’s health. Our immune systems are just as much a battleground for inequality as the rest of our bodies.
We need to listen to patients’ stories and we need to be willing to say “I don’t know.”
“I don’t know” is a beautiful thing. “I don’t know” is where discovery starts. If we can approach the great vastness of all that we do not know, rather than the fear of uncertainty, we can greet it with a sense of wonder. ~Jennifer Brea, TED Talk
JENNIFER’S TED TALKS VIDEO
Unfortunately, I was one of the unlucky ones. Who became ill before the internet. Who became ill before I found any community. And yes, I did try to kill myself several times. But 10 years after I became ill, I started to find a community.
And now that I have started to network with fellow CFS sufferers around the globe, that community is expanding. Of course, the CFS diagnosis was given to me as a wastebasket diagnosis because I was, in the eyes of my physicians, perfectly healthy. Yet I’d never felt so sick.
One day all my suffering is going to count for something and help a whole lot of other people. I will give a TED talk. Perhaps I shall write a book or make a documentary like Jennifer Brea has, despite complications from her CFS.
This is a TREMENDOUS accomplishment and a STAGGERING achievement for Jennifer.
Jennifer Brea on her film “Unrest,” which premieres in the U.S. Documentary competition at the 2017 Sundance Film Festival.
Learn more about the film here: http://www.sundance.org/projects/unrest
She is an inspiration to me. One day you will see me on that TED stage, with a cane or a comfy wheelchair, being asked to wave instead of clap.