I write about brain rot quite often. I write about the fight. The will we have to find a cure. The lack of trials and funding and interest in such a rare disease. I know more about the cerebellum than any regular person should ever know. I know about every alternative treatment, oil, vitamin, exercise, acupuncture, diet and crazy voodoo spell there is..we’ve tried them all. I talk a lot about it. I laugh about it. I joke about it. I am proud of our strength…the strength of my little family as we navigate this shit. But I would be remiss if I didn’t talk about the times its not so funny. The ugly truth of it.
I don’t want to. None of this will paint me in a very good light. I feel like a monster even thinking some of the things I think. So to write them down and admit them feels yucky. But…BUT….its the truth. Its the peeled back, naked, nasty real truth of this.
Patrick & I are attending the National Ataxia Foundation’s conference in 2 weeks. Its in Denver. Convenient. Its a 3 day symposium thingy with all kinds of doctors and nurses and researchers talking about the latest and greatest and newest news and research on Ataxia. And a room filled with hundreds of people with Ataxia and their spouses/families. Sounds like a fucking party to me. And to top off the weekend there is a dance. Yes you read that right…a god damned dance…for people with ATAXIA. For people with a disease that greatly affects balance and coordination. Don’t think I won’t have my iPhone set to video to tape this shit and put it on youtube. Yes. YES- I am aware of how horrible that is. I just don’t care.
Its so easy to judge other people. SO EASY. I do it all the time. We all do it- its human nature. And I know everyone handles things and situations differently. And I know I said “in sickness and in health” and I know only an asshole makes fun of brain rot. I am an asshole. I admit it. I can honestly say you have NO IDEA how you would feel or react to this if you have not been through it. And very few have. Its a rare disease. And dear God in Heaven I wish I could handle it with grace and sweetness and be that catering, doting wife that quietly fights and is grateful just for the moments we have together. I REALLY REALLY do. I hate that wife. I hate her because she has her shit together.
I write about this once a month or so. My friends ask about it now and then. Our parents visit sometimes and ask about any updates. And then they get to walk away. They get to go back to their lives of perfect balance and clear speech and normal-ness. I do not. We do not. We live it every single damn second. Every moment of every day of every week of every month it is there. It never EVER goes away. It slaps you in the face in the morning when you wake up. It weighs on your mind as you fall asleep. It affects absolutely every single fucking thing you do. Everything. And the ugliness is Im sick of it. Im tired of it. I want to run away sometimes. I want to scream and punch something. I want the guy I married back and its not fucking fair. None of this is fair.
And I sit in my car and wonder how far I could drive before anyone would notice me missing. And I don’t want to be solely responsible for him and our kids and our finances and the medical shit and my sanity and his happiness and keeping things “normal”. I just don’t. Im not equipped and I did not sign up for this bullshit. I can run up Pikes Peak and back down. I can. He can’t. I married a guy that could. He could run fast and bike and swim and did triathlons. He never smoked he ate well and was extremely healthy and fit so FUCK you fate or whatever bullshit gene went haywire and caused this. IT IS NOT FAIR.
So this is a bad day. He is far away on business. I am here. At home doing soccer practice and cheer practice and high school registration (good god) and running kids to school and picking up prescriptions and doing laundry and working and being resentful of it all and the fact that I may have to do it all alone someday. And I know Im an asshole for these thoughts and feelings. I also know Im HUMAN. I know its ok to have a bad day. A sad day. I know its ok to get angry…at him…at the world…at healthy people who take it for granted…at people who CHOOSE to be unhealthy. Its all OK. And even if its not oh well…its how I feel and I cannot change that. Theres a lot I can’t change and for a total control freak that is difficult. So I deal. I shut down, I shut people out, I cry, I laugh, I joke, I work, I exercise, I do whatever the hell I have to do to cope. And if you don’t understand that I got nuthin’ for ya. Except to say I wouldn’t wish this shit on my worst enemy.
I love my life. I love my family. I love my job. I love my friends. And I have bad days. Where its all about me and not about him. Where he may HAVE the shrinking brain but I feel like Im shrinking too. And I know that tomorrow will be better. Because it will. Because I will. I am a VERY strong, tough girl. I always have been. But strong girls have weak moments too. Thank you for letting me share mine. Thank you for letting me be openly human. I hope that maybe MAYBE maybe someone won’t feel as shitty about their raw thoughts if I share mine.