I am a crier. I have always been. I don’t shy from a good ol’ fashion ugly cry- the kind where you look in the mirror after, all puffy and shrunken and think, “Who stole my face?”
It’s a good thing I dont mind a cry. There have been days where I’ve wondered how many tear ducts I have and how much saline can one person produce.
I cry a lot.
Today was no exception. Last night I read that Charlotte Figi died from complications due to COVID-19. Charlotte was the ‘Charlotte’ behind Charlotte’s Web; a form of medical marijuana formulated to control epilepsy and intractable seizures. Charlotte had a devastating disease call Dravet’s Syndrome. She went from having 300 grand mal seizures a week to 3 a month while taking Charlotte’s Web.
Intractable seizures are hell. The brain has waged a war against itself and the entire nervous system. As Charlotte’s mother said, “You hold her and feel her seizing and wonder if this will be the last movement you feel from your child.”
The Figi family changed outcomes for so many families. They enabled us to ask our epileptologists the hard questions, “Why not CBD oil?” “Why not try this?”
They pushed the medical community and in turn enabled us desperate parents to push too.
Dr. Sanjay Gupta has written a beautiful tribute to this family: https://www.cnn.com/2020/04/08/health/sanjay-gupta-weed-charlotte-figi-tribute/index.html
We love these pioneers. Rather it’s fair of not, the special needs community attaches to these families; we watch and learn. They give us hope that someday we too can be pioneers; find that secret cure or a therapy.
I read the news last night and cried; cried for a family that fought so hard. And of course because it’s me, I posted my sad on Facebook.
“Are you okay?” A friend texted me.
“Oh. What? No, I’m fine.”
Well okay, I’m not fine.
I am struggling as I think many of us are right now. But as I stated in my last post, there is an undercurrent of grief in my life that I am familiar and comfortable with. I can talk about it because it really is a part of me.
We should be sad, shouldn’t we? 88,000 people have died since December- almost 15,000 in the US alone.
It is during these times I inhale
and breathe out a collective fffffuuuuuuucccccckkkkkkk.
I just did it. Try it. It feels awesome.
I’m going to do it again, even though this is a family blog
We are not broken if we are sad. Sadness does not mean we are depressed. Sadness does not mean we will never be happy again. Sadness holds no blame. Sadness just lets you feel the feels.
We have been raised to silo our emotions. People ask how we are and we reply with one word answers; good, fine, sad, mad, happy………But we are not one word humans. We are so much more than fine.
We can be sad but still be grateful for what we have. We can be mad but still love. Emotions are not either or. We are not an x/y equation that must be solved.
Our society doesn’t help with our emotional fluidness. Media is filled with either stories of great sorrow or great triumph; peppered with all of the reasons why we should try to do what we can to be happy and find joy. We have become emotionally schizophrenic- lead by what triggers a response, not by what we really feel.
You ready? Inhale deep and do it again…..fffffffffuuuuuuuuuccccccckkkkkkk.
Am I okay? I can only be the best barometer of who and how I am today and what feels right for me. How many tears? How many kleenex? Oh yeah, it was an okay day.
And sometimes, its okay not to be okay.
Love and light to the Figi Family. We hold your sadness too.
And love to my friend. Thank you friend.