Monthly Archives: February 2015

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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PERFECT MOMENTS

I think I’ve gone through life thinking there is a perfect whole I am aiming for. A goal. A final destination. So Ive hurried through time trying desperately to get to that perfect destination. It took 41 years to realize there is no perfect final destination. There is no final perfect whole. That dumbass saying about life being about the journey and NOT the destination is true. Dammit. It is. There is no perfect whole final destination. But there are some very perfect moments. The secret to life is recognizing them, slowing down, and enjoying them.

Sunday night I drove home from the cheer competition alone with Maddie asleep in the car next to me. It was dark and very, VERY snowy and slick and a bit scary. Just me and the radio for a few hours was nice though. And I looked at her curled up in a ball in her cheer uniform with a blanket and thought…this is one. This is one of those perfect moments. She’ll have her drivers license in just over a year and she won’t need me to drive her anywhere. That is such a weird realization.

I remember when I had Andy and Patrick had gone back to work and it was one of the first days I was home alone with an 18 month old and a 2 week old infant. And I remember rocking him in a chair while Maddie toddled around and for the first time in my life, at age 29, I felt like a Mom. Im not sure why it didn’t hit me like that with Maddie. Believe me I would have killed anyone who harmed my kids. Still would. But that overwhelming feeling of “God I am someone’s mother…I am two people’s mother” hit me in that moment. It was one of those perfect moments of panic and joy and fear and gratefulness all in one.

A few years later I was sitting in my parents driveway in a lawn chair drinking a Coors Light with my Dad. We were the only two outside and Charlie Robison was playing on the stereo (yes the garage stereo). We were discussing politics and music and how to change the world. It was important shit. All the important shit is figured out over Coors Light in a lawn chair. We sat well past dark and stared at the stars. Perfect. PERFECT. Moment.

In the past few years I’ve slowed down. Mentally I mean. And no jokes please. Im just as quick witted as I’ve always been so shut it…I mean Ive slowed my brain down, calmed the rush up there. Its been so nice. I truly honestly enjoy the moments more now. I don’t rush through things like I did. I don’t wish the days away. I don’t hurry. And I like it. Its ironic that this most beautiful and favorite time in my life is also filled with crap. Maddie’s health problems, Patrick’s brain rot. But somehow in the midst of all of that…and maybe BECAUSE of all of that Ive come to accept that there is a sadness in acceptance that your ending may not be the “Happy Fairytale” that you dreamed of or expected. It is sad. But acceptance is good because it leads to new discoveries. There may be no perfect ending…but there are absolutely perfect, beautiful, amazing moments that take your breath away if you let them. If you slow down and SEE them.

I’ve been lucky enough to have many. I had one in college, with an old friend. I had one at my wedding. I had one in high school at a football game while cheering. I had one on a mountain recently. I’ve had 42 years of many perfect moments. I know I’ll have many more. And now I know Ill actually be RIGHT enough and happy enough and slowed down enough to recognize them. And I’d give up a perfect ending any day for a million perfect moments.

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INSTANT GRATIFICATION…A FAMILY OF “RIGHT-NOWERS”

So in the car yesterday my husband…you know the one with brain rot, says “this medicine isn’t working”. I wrote a month ago or so that our new Dr. Cool Lady Neurologist had run some very specific testing on Patrick (that apparently none of the other 5 neurologists thought to run) and found a certain deficiency in his brain. She put him on a very high dose of said vitamin and said “IT WILL TAKE 6-8 MONTHS TO NOTICE ANY CHANGES”. So in Ellis/Nugent language that translates to “you should feel totally normal in 2 weeks!”

We can’t help it. All 4 of us are that way. And I think we are not alone. Society as a whole is pretty keen on instant gratification. I know I am. When I started using my wrinkle/face cream (which I love by the way) I woke up after one use and expected to be wrinkle free and look like my 22 year old self. Ummmm…not quite. But 1 year later Im loving it. And the day after I started drinking Shakeology a year ago I expected to look like a super model and have ZERO sugar cravings. OK maybe not a super model but you know, whatever. Guess what? It took 3-4 weeks to REALLY feel the effects of Shakeology. Its taken a year to clearly feel totally different, full of energy, have better skin and hair, sleep better, etc.

My daughter is currently dealing with A LOT of health issues and injuries. She fights through it all very bravely. And yesterday on the way to one of her many doctors she said “Im not going to any more doctors unless they can fix all this…I mean what the heck did they go to medical school for anyway?” Oh Lordy…apple…tree…she is truly my child.

And my sweet, cute, ADHD inflicted almost 13 year old son….well….he came by it honestly. Trying to have patience in a world that doesn’t move as fast as you need it to is difficult for this 42 year old so you can imagine how it is for a kid. He is so impatient. Bless his heart. I may kill him before he graduates (God willing he graduates) but he just can’t seem to find the use in Math. Or Social Studies. Or science. Or English. Or school. Honestly…most days Im with him!

So I got my 1099 from the government last week before my trip. I was VERY pleased with what I made last year as a Beachbody Coach. But the glass-is-half-empty gal in me was thinking “what the crap I need/want/should have more money”. You know…because…MORE is always better! Always!

And I went to my Diamond Coach retreat in Los Angeles and got to talk to some of the other coaches who are EXTREMELY successful and been around a few years longer than me. Needless to say their 1099’s send their accountants into panic mode. But they all reassured me that what I made my 1st year as a coach was exactly what they made. Then it quickly began to compound over years 2 and 3 and WOWZA! Big money…in years like 4 and 5. And I thought for one second “I don’t want to wait 4-5 years to make MORE”. I want it NOW! I have no patience for this. Then I shuddered at myself.

What a dummy. I work with people who have a LOT of weight to lose. Like…A LOT! What if on week 3 I said “well shit Sara, sorry, you’ve only lost 3 pounds I guess its over for you and you will never lose anymore”. Ummmm… not how it works. My clients, customers, and friends who are on a weight loss journey are working their asses off (literally) and doing it one day at a time. They are consistent. They stick to a routine. They spend weeks and months grinding away at their goal. And over long periods of time with small changes they see HUGE differences. Its a marathon NOT A SPRINT!

I tend to be a “giver upper”. That person who says “well, I see a lot of hard work ahead and I’d rather go shopping than work hard”. At least I WAS that person. This past weekend with 13 amazing, business savvy women I saw first hand what HARD WORK, consistency, determination and TIME can do for your life and your finances.

So Patrick will keep taking his vitamin, Maddie will keep going to the doctor, Andy will keep doing “useless” homework and I shall keep plugging away everyday. I have a dream. I have big goals. And by God I have patience DAMNIT! Did that sound believable?

NEVER GIVE UP!!

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