Tag Archives: illness

I DONT HAVE TIME

I remember my Dad getting more teary-eyed as he got older. Shit he didn’t get to get that old…I mean 53 is pretty damn young to die. But he became a more “emotional” guy as he got older. I remember the same thing about his Dad. My Pawpa. I wondered why they teared up so easily. I figured it was a side effect of aging….you know cuz when you’re 29 you think 53 is old! Moron.

I think I was partly right. I think tears come more easily the older you get. I think a lot of good things come with aging to make up for the crappy bags under your eyes, wrinkles and need to pee every 20 minutes. And one of those good things is an ability to ACTUALLY appreciate things. Appreciate people and time. Time. So funny none of us think we have enough of it. I guess we don’t.

In my line of work as a “coach” I encourage people to get healthy and eat right. I get to harass them every day to make sure they did their workout. And Im also the leader of a team of coaches. I have to find clever ways to motivate them in building their businesses. The very most common thing I hear…ok its not a thing lets call it what it is…its an EXCUSE. The very most common excuse I hear is “I don’t have time”. I hear it MANY MANY times a day. “I didn’t have time to get my workout in” “I didn’t have time to read any new training” “I didn’t have time to make my Shake” “I didn’t have time to cook so I ran through a drive through”. I DONT HAVE TIME”. I know. I know.

I am not trying to be an asshole. I know you have 4 kids and laundry and a job and after school meetings and work crap and your kid is sick and your head hurts and you injured your knee and the store doesn’t have the right fruit selection and your son has soccer and your daughter has swim and your kids come first and you are tired. I. Know.

When my husband was diagnosed with Brain Rot we had to seriously sit down and think about TIME. Headaches and carpools and stress of getting to swim practice or soccer or school functions kind of blow right out of your thoughts when REAL shit happens. I used to never be late to anything. I used to never let my kids miss school. I used to make every single class party and school PTA meeting and I don’t regret any of it. I MADE the time for those things at that time because that is what I wanted to do. When the shit hits the fan. When you are faced with illness and a questionable amount of time you tend to re-evaluate. Re-prioritize. And you realize you may not have time. I think I came to terms with that when my Dad died.

Not one single one of us knows how long we will physically be on this Earth. None of us. The piece we have in common is none of us are getting out of this ride alive. None of us. So when a few smart neurologists tell you “hey sorry we don’t really know what this will do to you or how long it will take” you stop making sense and you stop making plans and stop making spreadsheets and stop being on time and making sure to never miss a dental cleaning. You move to Colorado. Because…why not? And you don’t wear a watch anymore. And that Type A shit kind of falls by the wayside. And you cry more. And thats ok.

I workout for several reason. It is my anti depressant. It gives me energy. It makes me happy. It is my job. And it will make me live longer. Also- I can. I can move my arms and legs and body so I should. Its a gift that I can. Its a gift that Im able to. And if I CHOOSE not to I am an asshole. Many want to. Many can’t.

Same with my business. There are days I don’t WANT to work a lot. There are days we all don’t want to work a lot. I love my job. I do. But Id rather hike all day everyday on mountain with no cell service. I cannot. I have kids and a questionable job future for my husband so I work. I envy those that have choices. I hope you know how lucky you are. But I guess we all have CHOICES. I couldn’t be happier with the ones we’ve made in the past 2 years.

I usually have a plan when I write these blogs. Not today. Just rambling. Feeling nostalgic and teary-eyed I guess. And happy. And lucky. Despite Brain Rot and my autoimmune disease and my daughter’s illness I am so lucky. So fucking unbelievably lucky. I CHOOSE to make time for the things that matter. My health, my happiness, my friends, my family, and ME! Nobody HAS time. They MAKE time. There’s a quote I love that I found when I moved to Colorado. “The trouble is you think you have time” – Buddha.

So if you want to run a marathon- do it. If you want to make a career change- do it. If you want to tell someone something and are afraid- TELL THEM. Do all of the things you want to do. Your soul NEEDS you to do them. Make the time for that. Live with no regrets. Live like there IS not time. Its a fucking great way to live!

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BAD DAY

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.

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