Tag Archives: ataxia

MORE THAN A MOUNTAIN

Well I was wondering when it would hit me. Today is the day. The first week of August has sucked for 9 years now. NINE. YEARS. Shit that went fast. My husband is out of town all week. The kids have a TON of stuff going on with soccer and cheer and school about to start. I’m planning to hike Pikes Peak Saturday. Oh- and its the 9th anniversary of my Dad’s death. I was hoping this stupid August thing was over. I think it’s just a combination of nerves about the climb, worrying about the weather that day, not wanting to disappoint anyone, my husband being gone all week and the craziness of end of summer.

But I was rifling through some old boxes the other day that I had never unpacked since we moved here and found some CD’s. Music CDs. And they were homemade and had my Dad’s handwriting on them. I had never listened to them before. I guess it’s one of the things of his I took. I had never heard of the artists (Im ashamed to say) on these CDs so I listened to a few. BLUES! It’s blues music. Crazy. The dude who introduced me to Led Zeppelin and U2 and The Beatles and Pink Floyd liked BLUES music. Who knew? Kind of nice to discover things about someone you never knew. And I may never have known had I not come across these CDs. This week. Funny.

Im nervous and scared and worried and anxious today about my climb. I just want to finish it. And the weather calls for rain. Which would scrap our climb and that would suck. Lightening is a real danger at that altitude. And maybe its the fear of disappointing myself that is the most bothersome. I really don’t have anything to prove to anyone else. But I have something to prove to me. I HAVE to do this. I wont be that girl that cannot do scary things alone. I wont! The deaths and brain rot and Hashimotos and thyroid problems and joint disease and move across the country and all of the other bullshit did not happen so that I could curl up and cry and complain and wait for someone else to help me. That is NOT the person I am. That is NOT what I want my daughter to see. Funny—I don’t have any female friends like that. That curl up and cry. And that makes my heart happy. Surrounded by amazingly strong women who can do anything has been a blessing.

That mountain stares at me daily. I remember how much my Dad loved Colorado. He died here. And I get to LIVE here.

Im nervous and scared and anxious and excited and hopeful. Because I need to climb the mountain. And its so much more than just the mountain Im climbing. I think I know that. I think that’s what makes me anxious. But man oh man…the view. I just imagine the view in my mind if and when I reach the Summit. What an amazing view I will have. And what an amazing view my Dad will have! 4 Days!!

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F you Monday

Did you ever have a Monday you just wanted to go back to bed. Curl up in a ball. Disappear?

I hate complaining. I hate complainers. I hate excuses. I’ve made no bones about that stuff. So this blog goes against everything I say I stand for. I wasn’t going to write this. Or at least not post it. We’ll see if I do. I think its important, though to share our struggle. To be honest. To let anyone who might be suffering out there know that they are not alone.

When Im stressed I hold it in my shoulders and neck. It doesn’t help that I have some cracked vertebrae in my neck that flare up once in awhile. So when stress is at an all-time high I can barely move my head. It hurts. Like SHIT. I still workout- because I need to and want to and it is what I do. I woke up today with tears rolling down my face the pain was so bad. But I wake up next to a dude who’s brain is shrinking. Complaining seems idiotic. And selfish.

My business is growing quickly. That is NOT a complaint. I could not be more thrilled with that. I am ecstatic. Its amazing and a blessing and Im so grateful. My “why” for doing this coaching thing isn’t just to “help other people get healthy”. Thats a big part of it. I love fitness and exercise and feeling great. But lets be honest- there’s good money to be made. And with Patrick’s very unknown work future I feel a serious obligation to my family to keep us financially secure. He makes very good money. I have not worked in years. I cannot express how grateful I am to him and to this situation for allowing me to be home with my kids all of those years. I am one lucky girl. So it feels so ungrateful to bitch about the pressure I feel when I know there’s single Moms out there that have been dealing with this for a LONG time. Who never had a supportive partner. But I can’t help but feel the pressure. Im sure my husband has felt this pressure to provide for 18 years. It’s my turn. And lets just say Im great at the “people and parties” part of this job. I love socializing, I love working with my team, I love working with people to find the appropriate fitness program and watching them succeed. The stupid ass taxes and administrative shit can kiss my ass. I don’t do “business stuff”. And now Im forced to. I know- poor poor me…business is doing well so I will deal. Its just me having a bitch session about the fact that I HATE dealing with numbers and taxes and accounting and crap. I went to a party college- and got a degree in Psychology because it required the least amount of math classes. And holy hell I need help because I don’t want to end up like Wesley Snipes and make a bunch of money then lose it because I DON’T KNOW WHERE THE HELL IT IS! OK- rant over about that.

People are relying on me. My kids, my husband, my customers, my coaches, my team. I love that. But it is stressful. My husband has been VERY wobbly this past week. And his speech is worse. It seems to be progressing. I knew it would. But for some dumb reason I ignore it. I love the little world I love in called Denial. It serves it’s purpose. It keeps me sane. It helps my neck. It helps me continue functioning. But he’s getting worse. And there’s nothing I can do to stop it. And it fucking sucks. And 99% of the time Im ok and happy and embracing life and knowing each moment is precious and appreciating it. Today is a 1% day. Fuck you Brain Rot. And I want to call my Dad for help. He’d run here. He’d move here. He’d be here to help me. But I don’t have him. I have me. And when I Iook around for the grown-ups to FIX this. For the support of a more mature person. For a place to fall down and cry while someone else cleans it up I realize there is no one. Its ME. Im the grown up. Fuck.

I got some sweet messages from people about my video I posted on Facebook last week of me dancing in my driveway to my new CIZE workout. Very sweet. And some saying- “wow I could never look that good dancing” or “wow you’re in great shape I could never live up to that”. And I feel like some people get a picture of a perfect girl with a perfect life who’s thin and in shape and happy all the time. I want those people to know that there’s REAL shit in everyone’s life. I am thin. Born this way. Im the bitch who can workout twice and have muscles. I’ve never been overweight. I was too thin at one point due to severe IBS and stomach issues. I feel great now physically- Im healthier than I’ve ever been.. I can climb a mountain. My husband can’t.

And he texts me that the wobbliness is even worse today. And I have 500 things on my list for work to do. And I have 35 messages to return. And a new coach basics group to help run. And new coaches to train. And a kid to take to the orthodontist. And a light bulb to change. And dishes. And laundry. And a health check up for school athletics. And a workout to do and video and post. And so, so , so many other things. And all I really want to do is cry. And go to sleep.

And that is me bitching unnecessarily. Because I know that there are a million Moms, a million people out there who have it WAY worse than me. I get to travel. I have amazing friends. I have a nice house. A great family. An amazing “job”. And it all looks perfect. Perfectly perfect in that dance video. And maybe thats why someone WONT think they can get fit or find their healthy or “look like me while dancing” (good lord aim higher). Dont do that- dont think its all roses. I am one tough ass girl. I am strong willed and capable and I never give up! NEVER! I love my work and I will pour my soul into that. I love my family. I know how damn lucky I am. I don’t dance because my life is perfect. I dance INSPITE of the shit and BECAUSE it is so imperfect. Now Im going to have a cry. Then Im going to put on my big girl Nike Pros and kick this week’s ass. I hope you all do the same. Thanks for letting this girl bitch a little….or a LOT!

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BRAVE

I think when I was younger I just assumed I’d never leave Texas. I am a 5th generation Texan. Seriously- thats a LOT of years and a LOT of family born and raised there. There’s this sense of security and safety that comes from staying near family. From living where you are familiar. From knowing there are a 100 relatives within arms reach. Especially if your parents are there. And when Patrick & I bought our last house in Texas it was 2.5 miles from my parents house. I cannot express to the degree at which I was certain, CERTAIN it would remain that way.

No matter how old you get having your parents near is a very cool thing. Well….most of the time. We had built in babysitters when we needed them. And the thought that if I ever needed anything or had to “escape” or feel like a little girl again for just a bit-was supported by the fact that in 5 minutes I could be at their house. My parents’ house.

I had never lived outside of Texas. I was born and raised in North Dallas. I went to college in East Texas and Patrick & I lived in Austin for a few years before kids. That is as far as I had ventured…Austin. Damn cool city by the way. Although I don’t have an NRA card or know any farmers or have ever ridden a bull as all the stereotypes would assume- I am Texan through and through.

When my Dad was killed I was 33. My kids were 4 and 5. And my plan went to shit. How dare he die. How dare my ideal image of life go up in flames. God damn deer. It’s funny that a lot of people I know live what I’d call a “charmed life”. They do not know tragedy or loss or illness or any of that crap. And I would be lying if I didn’t have a tinge of jealousy over that. That ideal life is pretty cool.

When I left for college it was 3 hours from home. I cried. I was nervous and scared and I’d never lived in a dorm or away from home before. But as I’ve blogged about before my second Mom, Lynda, convinced me it would be the right thing. And she was so very right. Im so grateful for leaving home and learning and failing and falling and getting back up on my own. SO. GRATEFUL.

So my Dad died suddenly and Patrick got brain rot and my pretty little plan unraveled. And when your husband has brain rot and asks how you feel about leaving your home and heading for the mountains you pause a second and then remember Lynda saying “GO”. Because why not?

So up and moving your life across the country is quite normal for a lot of people. Military families do it all the time. They are better than me, though. And to this girl- moving to Colorado was HUGE. HUGE. And the honest truth is I had to have a conversation with myself about my future. If my husband is no longer around and my kids are off at college am I going to be OK in Colorado with no family? Alone? It’s just a question I had no choice but to ponder. I never considered myself all that strong or independent. I liked having family around, I liked having support, I didn’t like being alone or left to handle things on my own. But that was before. Before motorcycle accidents and brain rot. And that girl had to grow up.

In the days and weeks after Dad died I was sick to my stomach at the thought of my Mom alone in her house. I hated that for her and wondered how she was going to survive. Now I know I was an idiot- she is a very strong person. And so am I.

I cry and worry and get anxiety and hate brain rot and have my bad days. But I KNOW I am a tough girl. Unfortunately I watched my Mom be that. Fortunately I got that from her.

It’s funny the things you think about as your kids get older. Maddie starts High School in the Fall…Andy wont be far behind…God willing….and that means in 5 years it’s just Patrick & I. That is crazy to me. CRAZY. The time flew. And I know…I know and am acutely aware that it could be just me. Of course not one of us knows exactly the amount of time we have on Earth. Tomorrow is not guaranteed for anyone. Im so grateful for the wisdom and strength and bravery and fortitude that was passed down to me that gave us the courage to move at the very time we probably should have stayed close to family. But life is short and opportunities arise at the strangest of times and if Im going to pass down to my kids the strength, the courage, the fortitude, the “why not” attitude….I needed to shit or get off the pot as my Grandad used to say. Actions speak loudly. I have embraced every part of Colorado. It has been the perfect place for my family. It is. Patrick is happy. My soul is happy and my kids are happy. Texas will ALWAYS be home. ALWAYS. But sometimes I think that fate or God or whatever you want to call it knows exactly where we are supposed to be at each turn in our lives. I am right where I am supposed to be.

My hat’s off to all the single parents out there, to all of our military families, to those who’ve lost loved ones, to the ones who have felt “all on their own”….YOU are the brave ones.

As I get older I realized that the things worth doing, the things you SHOULD do are the things that make you nervous and scared and anxious. If it doesn’t make you those things……is it really worth doing? Do scary things. You are braver than you think.

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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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A DIFFERENT KIND OF EASTER

I grew up a few miles from both sets of my grandparents. I had both parents in my house growing up. My parents stayed married. To each other. In fact I don’t think there was one divorce anywhere in my immediate or non-immediate family. I grew up in the middle class suburbs with two awesome parents and great neighbors and wanted for nothing. Norman Rockwell shit. Seriously.

Every Holiday we spent together. Both sets of grandparents and the occasional cousin or aunt or uncle and their family if they were in town. We had a “formal dining room”, You know…the one you are not allowed to go in. My Mom and grandmas made all of the big southern meals at Holidays. Be it Thanksgiving, Christmas, Easter, there was always a house full of people and hot rolls and salad and ham and green bean casserole on the table. And very often football in the background….Cowboys of course. I loved all of that. We stuffed ourselves and then all fell asleep scattered like full-bellied bears across the floor, couch & Lazy Boy recliner. Papaw even snored sometimes.

I think I just assumed at the time that all families were this way. That every kid had this life. The security of food and a house and family. I knew I wanted that for my own family one day. I imagined living near my parents and having most Holidays spread out across a large formal dining room table and ham and rolls and kids running around and football.

And until my daughter was 5 I had that. We had that. Bikes and trikes in the driveway and music blaring through the garage and sometimes a picnic table in the garage to accommodate extra cousins or aunts or whomever showed up. Bliss. Happy. Crawfish boils were introduced to the mix once I introduced a Cajun boy into the mix. My Dad loved that. My Dad loved him. My parents had an acre of land and my Dad would take turns giving the kids rides on the riding lawn mower. In Texas you could wear shorts on Thanksgiving. We had a dirt bike that even I would drive around the property. I recall (kind of) tying rope and shovels to the back of the horses that the neighbor owned and riding the shovel while the horse would run full speed. OK just a tad WT here but whatever it was fun. And stupid. And fun.

And I think I just assumed it would always be that way. Living a few miles from my parents and always having them there. That my kids would have the same experience with there grandparents as I did. You know what they say about assuming though…

And shit happens. And Dad dies. And brain rot starts. And things change and worlds are turned upside down and inside out and good God its shitty and not fair. And you stop. And you decide you can cry and be sad forever and bitch about how NOTHING is the same and your life is not turning out like you expected and where the hell are all the Norman Rockwell paintings now? OR…..

You can change too. You can pick up your family and move across the country where you know NO ONE! NO ONE. And have no family. And you’ve never baked a ham in your life. And your house has no formal dining room. And you wake up on Easter morning and go shopping for clothes and hang out on your deck staring at the mountains because football is not on and you take your almost 15 year old daughter to learn to drive your Jeep with music blaring…and it ain’t so bad. Its NOT in anyway how you thought it would be. At all. And there are a few moments that is sad. And you get a group text from your brother in Dallas, your Mom in Washington, your sister in Austin…all saying Happy Easter. And maybe the table and the hot rolls and the physical proximity of them is not there….but the memories are. And instead of mourning what your kids WONT have you look around at them giggling in the parking lot trying not to drive into a pole and you think….”this is ok”.

New memories, new traditions, new acceptance, new stages of life. I still get sad at what might’ve been. But I don’t want to be so sad that I miss what IS!

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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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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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SILVER LININGS, COOL DOCTORS AND HOPE

Silver Linings: A Short Brain Rot Update

The definition of a silver lining:
silver lining. Use the term silver lining when you want to emphasize the hopeful side of a situation that might seem gloomy on the surface. The common expression “every cloud has a silver lining” means that even the worst events or situations have some positive aspect.

Staying “hopeful” can be hard for people with a rare disease and no known treatment. For two and a half years my husband has been tested for every disease known to man kind. He is absolutely healthy. Perfect cholesterol, perfect blood pressure, low body fat, perfect weight, great heart, no Parkinson’s, No MS, No ALS, no cancer. He is the healthiest person on Earth who’s brain is shrinking. Very frustrating! FIVE neurologists have had his case. Some in Dallas and some in Denver. They all were old. OK not to insult but they were all over 60…older not OLD. They all wore white lab coats and had ZERO sense of humor. I was beginning to think Neurologists were born without personalities. Not ONE of them found my use of the term BRAIN ROT funny…until now.

I fired all 5 of them and got a new Neurologist recently in Denver. She is 40 years old. And cute. And wears cute clothes- no lab coat. And cusses. And laughs at my jokes and stole my term for Spinocerebellar Ataxia and now says “brain rot” to us. She ROCKS! She runs the Ataxia Clinic in Denver. RUNS IT! And not ONCE in our initial 3 hour meeting did she make us feel hopeless. In fact it was the exact opposite. She is all about fixing this. She made it very clear we are going to keep looking until we find out WHY and then HOW to treat it. I like her. So when she ordered a spinal tap last month to test my husband’s spinal fluid I understood why Patrick said “no”. He’s been poked and prodded and through a bajillion tests that were QUITE painful with no results. All clear. Every test he takes reveals that he’s perfectly healthy….only he’s not. So I knew he would not be gung-ho about a SPINAL TAP! SHIT…who would?

But our new Dr. Cool Lady explained some very rare disorders than can lead to Ataxia that she has come across in her research and she had a “hunch” she wanted to follow. So I of course was all “oh ya- let’s stab a needle into your spine and suck fluid out”. FUN STUFF!

So we did it. Well….he did it. I watched. I didn’t want to watch but I sort of felt like it was the least I could do. The results were shipped off to The Mayo Clinic and we were to sit and wait. Sort of used to that by now. Patrick was not the least bit optimistic- who can blame him. I sort of was. And for a “glass is half empty” kind of gal that was surprising.

And ONE MONTH LATER…the results. For the first time in well over 2 years a test came back abnormal. Do you know how weird it is to be ELATED about an abnormal test?

So I won’t go into detail but she immediately put him on a medication that has worked for one of her previous Ataxia patients. It has only been 3 days. But I am hopeful. She talks to us as if there’s no gloom and doom. As if there’s no reason to expect Patrick doesn’t have a long future ahead of him. God damn it he’s gonna have to live with me a LOOOOONG time. Poor guy. At least we think so. Who really knows how long they have. Life is short and making the most of everyday is a MUST!!

I want to thank Dr. Cool Lady for being the greatest doctor we could ask of. For being hopeful. For being positive. For looking in places no one else thought to. For going above and beyond. For making me smile. Oh- and Patrick too of course but we all know this is about me ;). Here’s to HOPE….

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A SLOW MOURNING…MOUNTAINS AND BANDAIDS

I have posted a few times on my fitness page that I have a goal to hike up Pike’s Peak this coming summer. It’s 13 miles up a twisty, turny, technical Barr Trail to the summit of the Peak at 14,114 feet. I can do it. Mentally Im good and if my knees will hold out I think I can do it. Im in “training” now working on building my endurance. I casually mentioned to my husband that I was going to hike it alone and he flipped out.

Apparently it’s “not safe”. Honestly there should be other hikers on the trail especially if its good weather. Ill file a plan, carry bear mace and not talk to strangers but he insists that some crazy mountain man might drag me away so I need a partner. So I TOLD my friend Susie this past Saturday that she’d be hiking it with me. Without flinching she said “I’d be honored”. I love her for doing this for me.

You know what sucks…as much as I love Susie I wish it were Patrick. I wish my husband could hike with me. It was never even an option. His fucking brain rot makes his balance very off and maneuvering such a technical climb is not possible for him anymore. And that sucks big fat ass. There was a time not long ago we wouldn’t have flinched. We would have already hiked that sucker by now. Patrick was a triathlete. Biking, climbing, swimming, running…many miles at a time. When someone dies suddenly and tragically you mourn so instantly. Its like a sledge hammer hits your chest and a knife stabs your heart. You scream and writhe in pain and hurt so badly so deeply and so quickly its like being struck by lightening. I feel as if brain rot must be like cancer or other long term illnesses…you mourn for so long. And its like every little thing that slips away is a new sledge hammer to the chest. Its exhausting.

It’s not quick. Its very gradual. Slowly and steadily and methodically the physical body starts to fail. And it’s day after day after day of mourning and being sad about yet another small loss. Most of the time we are fine. Some days I am pissed. Maybe today I am pissed. Pissed that instead of ripping the bandaid off quickly and efficiently so the pain is intense but hits you fast, the bandaid is so so slowly being peeled off against his will that you have to suffer through each hair it pulls on. And why the fuck did he have to have a band aid pulled off in the first place.

Tomorrow I will feel better. He won’t. I am finding strength as this disease creeps on. I am finding strength in me as a woman and mother and wife. More than I EVER thought I was capable of. It’s a necessary strength. But there’s a guilt that comes with a gaining of my own strength. For I can climb a mountain. I can run. I can speak clearly. I can do anything. And I should. I should do everything for those that cannot. I have no excuse NOT to. I know many who would never attempt to climb Pikes Peak. I mean whats the point? Why? It will never cross their minds. But they CAN. If they want to. Patrick cannot. Someone who ACTUALLY wants to cannot. So I will. And Susie will. And like no other human on Earth she knows me and why I need her to go. She has suffered great loss.

And like my friend Steph says “sometimes we step in for others when they cannot do for themselves”. I’ve had a LOT of friends step in and step up for me. I am eternally grateful. And I will push play on this stupid fucking INSANITY MAX workout that nearly kills me everyday because I CAN. Because I have no excuse not to. And I will climb that Peak this summer. For myself, for Patrick, for those who cannot.

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DOWNHILL SUCKS…BUT IT MAKES ME ENJOY THE VIEW

My husband and I went on a 5 mile hike at Palmer Lake Reservoir Sunday. I was secretly hoping he would pick Santa Fe or Spruce Mountain to hike instead. Palmer Lake has a pretty steep ascent that is quite long which means coming back is a very steep descent. I’ve grown to despise going downhill.

My husband’s “brain rot” (see previous blog from July if you are unfamiliar with the “brain rot”) causes ataxia. If you don’t know what that is it basically means uncoordinated. His balance, gait and depth perception are quite affected now. He walks like he is drunk. Without the fun part. So hikes are a challenge. Going uphill is great. There seems to be less of a balance issue and we trek along at a good pace.

Downhill SUCKS.

It takes quite a bit of effort by the human brain to coordinate all of the bazillion things that must occur for your body to move downhill and not fall. It really is quite amazing. Most of us take that simple event that happens a thousand times a day for granted. Just one foot in front of the other…not giving it a second thought. Patrick does not have that luxury. His brain does not communicate correctly with his feet. In fact…his exact words on the hike were “my brain doesn’t know where my feet are”.

So as we start the descent downhill I put my arm out…he grabs it. It helps for him to balance against me. He said I am like his “stair rail”. Ha. Glad I can be useful. So as all 165 pounds of him LEANS on all 102 pounds of me and wobbles or falls or loses balance or shifts its a bit of a thrill when you are on the side of a cliff with a 200 foot drop!

Now, to put it mildly, I am NOT a patient person. Thats why I find it quite ironically humorous that the universe blessed me with a child with severe ADHD and a husband with brain rot…REALLY? So the downhill portion of the hike is quite a test of character for me. HMMMM…be patient and support my husband down the hill so he doesn’t fall or get irritated and say “dude you’re on your own I just cannot go this slow”. Yes I just re read that. I AM that shallow. Shit- I know how bad that all sounds. I am human. And if I said I love every fucking second of this journey we are on I’d be a liar. Some of this crap just SUCKS! And at times I lose my patience. At times Im not so sweet (if you can believe that). At times I question what the hell we did to deserve this. At times I want to run. I am so far from perfect and I will right here, right now admit that when I said “in sickness and in health” this shit NEVER crossed my mind.

So as I “slow my pace” to match his and keep thinking how many more calories I could burn if I was moving faster I sort of saw myself and thought “damn you’re an ass”. I started looking around at the mountain, the rocks, the trees changing colors, the caves, the blue birds, the lake and my husband. Slowing down. SLOW. ING. DOWN. If he didn’t have brain rot we would walk much much faster. We would have raced each other for fastest time. We also would not have had the 50 great conversations we had. I wouldn’t have noticed the water, the birds or the trees changing. Because I would’ve been rushing to finish.

Now before you think Ive come to find the “REASON” behind him getting brain rot or that I believe everything happens for a reason or that we are done fighting this thing that couldn’t be further from the truth. I quit trying to find “all the reasons why things happen”. It is a colossal waste of time and energy that could be spent doing something more constructive. Like research.

All Im saying is…sometimes slowing down is not such a bad thing. It’s all in your perspective.

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