My husband has Brain Rot. OK its technically called Spino Cerebellar Ataxia but we call it Brain Rot. His cerebellum is shrinking. There is no cure. There is no treatment. It is so crazy rare that there is no money for research. The doctors have said “enjoy life while you can”. Thats always a good thing to hear. My daughter has a chronic pain disorder, Hypothyroidism and Hashimoto’s disease. My son has terrible ADHD and struggles with school. I have an autoimmune disorder that causes stomach problems and caused MANY miscarriages…some I had very late term. There are definitely days I crawl under the sheets and cry. And want to just sleep. There’s days I cuss. There’s days I want to punch people who are lazy and complain but have no real reason to. But most days…MOST days…are amazing.
Immediately following Patrick’s diagnosis in 2012 we decided we were going to move to Colorado. Ive always wanted to live here. My Dad loved it here. We vacationed here as kids. And Patrick wanted to be outside doing OUTSIDE things for as long as he was able. And in the process of this move I found mountains and hiking and friendships and myself.
We all have our shit. All of us. There’s not really anyone who escapes suffering or loss or pain. Its part of life. So I have, we have…choices. Choices when you are dealt a crappy hand. It is definitely a CHOICE to be happy everyday. Damn its a CHOICE to get out of bed every day. A choice you make. Somedays I cuss a lot. Somedays I cry. Somedays I want to get in my car and drive. Far! But thats just somedays. What makes it all worth it is the OTHER days. The MOST days. The good ones. And there are a lot of them. Hiking, friends, trips to Cabo, mountains, lunches, moments with my kids, watching her cheer watching him play soccer, watching deer walk across my yard, talking to a friend….all the little stuff. Thats actually the big stuff.
When I was young I used to sit and watch my Dad change the oil in the cars in the driveway. I actually never knew until college that there were places that you could pay to change your oil. I thought all Dads just did that. And the garage radio would be on blaring CCR or Led Zeppelin and I remember feeling this sense of comfort and safety and HOME. HOME. I don’t think its a place anymore. I think its a feeling. I love when I get that feeling.
Patrick is getting worse. Slowly. Slowly. It is little things. Balance is worse. Speech is slightly worse. But God dammit he is fighting it. He lifts weights and modifies and does the workouts we have and builds muscle strength to help with balance. But we know the reality. So there’s an update. Some have asked. Im not yet to the point Im thankful for Brain Rot. Not sure Ill ever be. It’s a tough one. But I am to the point that Im grateful for what its taught me. Patience. Love. Acceptance. Ok Im working on that patience thing.
Life is so beautiful. So sad and tragic and heart breaking and gorgeous and full of joyous moments and beautiful people. You just have to choose to look out for the GOOD things. Find the pretty people, the people who are beautiful INSIDE. Find the gorgeous moments and the places that make you happy and go there. GO THERE! Dont wait. Dont hesitate and god dammit stop thinking so much.
When I went public with Patrick’s brain rot in July of 2014 someone wrote me a very rude letter about how I was handling it wrong. I saved that letter. I wanted to throw it away. It was pretty bad. But…I kept it. It is a reminder of how NOT to be. How NOT to act. What Un-kindness looks like. I may be “handling” this all wrong but its the only way I know how. And Im happy. Very VERY happy. And THAT is what matters. I think this growing up thing can suck sometimes. But I have become a different person because of Brain Rot. Because my Dad died. And I see the good in that. Learning to find the good within the bad is a pretty cool thing.
Love life. Enjoy life. Grab life by the balls and run! LIVE!!! I choose happy.