When someone dies instantly and tragically and unexpectedly it is so damn hard to come to peace with it. A lot of times things are left unsaid. You may feel guilty about the last conversation you had. Or the fact that you never got to say goodbye or tell them how you felt about them. Or you are left to wonder forever what their last moments were like. It’s such a gut ripping, heart piercing, mind numbing thing to go through. To have someone you love die suddenly. Unexpectedly. There on Earth, walking talking, laughing and being in one moment….then in the blink of an eye- gone. Gone physically. Gone from the Earth. Just gone. In the snap of a finger. Thats how my Dad went. Thats how a lot of people go. In accidents. In tragedies.
And then there’s those that go slower. That die slowly. That have an illness that we know will take them eventually. And we watch them suffer. In pain and tears and become someone we do not recognize. Having experienced both I can honestly tell you there is no better way. There is no way that hurts less. There is no “closure” to be found. Thats a dumb fucking word anyway.
When my Grandad had Parkinsons disease it was a gradual process. But we knew for 8 years what would take him. Eventually. And the man standing on the deck over the lake and throwing me into the water and teaching me to fish and driving us around in the boat and carrying us on his shoulders just wasn’t. He became frail. He became weak. He became lost in a body that his mind no longer functioned in. The Grandad I knew and loved was gone long before his body quit working. It sucked. Cancer does that to people. Cancer is a bitch.
Brain rot is doing that to my husband. I don’t think people talk about this subject. I don’t think people talk about a lot of subjects that I talk about. I guess they are supposed to be “taboo” or too sensitive or not appropriate or may hurt someone’s feelings. I did not get the memo on that. I don’t know how to pretend it doesn’t happen. I don’t know how to hide how I feel. And I damn sure know if theres someone out there going through this that I want them to know they are not alone. That all of the shitty ass terrible things you think are perfectly normal. Perfectly human.
I never knew anyone as athletic as Patrick. He is very lean. Pure muscle. No fat EVER on this guy. He was muscly and in great shape when I met him. Still is. He used to do Bi-athalons and Du-athalons and mountain bike racing and running and weight lifting and could hike me and anyone else under the table. He’s never smoked or done half of the stupid shit I did. He has always been extremely healthy. Until his brain started shrinking.
Im pretty sure I don’t exactly look like the 23 year old girl he fell in love with. I mean Ive held on pretty well for a 43 year old I guess but things have fallen and changed and aged if you know what I mean. The usual things that happen with aging have happened to me. I fight it everyday by staying fit and eating well. But its just getting older. I wouldn’t trade this 43 year old body & mind for that idiot 23 year old one I had for anything in the world. So there’s the normal aging that comes in a relationship of 20 years. And then there’s Brain Rot. And it does some shit-tastic things to your body. I remember when we got the diagnosis a few years ago my first question was “How will this affect his cognitive abilities, his memory? Will he still know me?”. I was 39 when I first asked that question. Too young to be asking questions like that about your husband. Too fucking young. The doctors have all assured us that Patrick’s cognitive abilities and personality will not be affected by Ataxia. That he will always remember me…it was such a huge relief. I remember thinking…”Well, I don’t care what physical condition he is in as long as he knows us and is the same person”. How damn naive.
So it turns out when your walking gets shitty and your balance goes and you can no longer do athletic activities and you cannot write and your speech is extremely slurred and you cannot move fast and riding a bike and throwing a ball are long ago history that it does just slightly affect your personality. Dumbass. How could I think it wouldn’t. And Lord I am so eternally grateful he is still HIM. He still leaves his damn underwear on the floor and is sarcastic and rude to dumb people and smart as shit and puts up with me. But I think the thing we are supposed to avoid talking about is that he is NOT the person I married. I know- people are judging and thinking “what an asshole” she is. And I guess I am. OK. But because when I started blogging I promised an un-edited version of this life, this journey, this crazy-ness, I will keep that vow. Because someone out there is going through it too. And speaking the truth is all I can do.
He is not that athletic, superman, studly weight lifting boy I married. He’s still incredibly handsome though. I’ve told him if the looks go he’s out…so he’s still got that! He wobbles. He slurs his speech. He’s very slow which frustrates the shit out of me. He cannot write so every check or note or paperwork or ANY thing has to be filled out and done by me. I literally told him to hurry up the other day. Literally. I know. Asshole.
When you are a physical person, an athletic person…it IS you. I know, I know, its whats on the INSIDE that counts and all that bullshit. Im eternally grateful he will always remember my name and that he’s smarter than me….whatever. But your legs, your speech, your ability to communicate, your ability to run and dance (he could never dance well so no loss there)….its all a part of you. And to watch someone’s physical-ness go, to watch it die, is sad. And there is a mourning for a person who is no longer with me. That boy I married is gone. But so is that dependent 24 year old girl who couldn’t do much on her own. I have looked around often at the women I surround myself with. They are BEASTS. They raise children alone and work and never rely on men. They are strong and confident and don’t bitch and complain about shit. Those women rock. Brain Rot has made me who I am too.
When you die suddenly you die in this form of a body that everyone knew. My Dad was strong and very healthy and could run and dance and do all of that. I can’t imagine him any other way. Patrick’s the smartest person I’ve ever known. Even with half a brain he’s smarter than most. He is still him in there- so crazy grateful for that. But to ignore the fact that he grieves the body he once had. To act like Im not sad about that boy being gone. To tell him “at least you have your cognitive abilities” is to minimize the loss. We grieve the physical body he once had. And that is perfectly ok to do. Saying goodbye to someone who is standing in front of you is a horrific thing to do. But its part of grieving. And Im long past giving a shit what other people think anyway. He’s a pretty kick ass guy who recently scaled a rock mountain that most able-bodied people wouldn’t attempt. Maybe when your physical body starts to go your Strength of Spirit takes over and gets stronger.
I’ll take strength of Spirit any day!