Tag Archives: ataxia

FIGHT LIKE A GIRL

I start a new workout program today. I have always loved the launch of a new Beachbody workout. It motivates me. And I need muscle confusion for my body to stay fit. I am not personally on a weight loss journey but Im always looking to get stronger and tone up more. A new program called Core de Force starts today for me. Its MMA. You know- fighting. Punching, kicking, weaving, jabbing. I have not looked so forward to a new workout program in a very long time and I was trying to figure out why.
When you have someone close to you die, or suffering, or diagnosed with a degenerative disease, or you’re just going through a tough time…there are emotions that people expect from you. Sadness, depression, confusion, despair. But Im not sure that we talk enough about the anger. Because as happy as I am, as much as Ive embraced life and every moment…Im pissed the fuck off. And I think that not enough people understand or even think about that. Not all the time. Not even most of the time. It just hits me like any other emotion- without warning.
And punching a door isn’t exactly cost effective. I am 5 foot 1 inch. OK 5 foot half an inch. I weigh between 103-105 pounds depending on the day. Im not huge. I’ve spent my life getting out of people’s ways in crowds, not being able to see the stage, jumping onto high places, not being able to reach the top cabinet, wearing pants that were way too long, having people pat me on the head like a pet and crossing my fingers that a bar fight would occur when my taller friends were with me.
But you know what 6 feet and 200 pounds and big muscles and physical strength can’t do. It can’t beat up cancer or Brain Rot. It can’t get you through each day. It can’t make you less sad (Ok maybe it can in certain situations 😉 ). It can’t make you less anxious about doctors visits or progression reports or ease your mind about your kids’ futures. I stood on a ladder recently to change a bulb and couldn’t reach it. Fuck. I couldn’t fucking reach it. My husband cannot stand on a ladder. My daughter wasn’t home. My son’s shorter than me. And I’ll be damned if I will NEED someone else to change it for me. I got it done….dont ask how it wasn’t safe. But it fucking pissed me off.
So I realized why Im so excited about this program launching today. Its not about weight loss for me. Its not a fitness thing or a nutrition thing for me. Its a chance to feel like I can kick some ass. Like all 5 feet of me can do it. I can punch and kick and weave and bob and get tougher and stronger and angry and its all ok. Its all ok. You don’t have to be 6 feet tall to kick life’s ass. You just have to be willing. And never give up.
I start Core de Force today. And the one sample workout I did made me feel like a bad ass, I am a bad ass. I changed a light bulb!
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CROOKED PATHS AND BEAUTIFUL PEOPLE

Someone once told me I was doing it wrong. DOING IT WRONG. It doesn’t matter what “IT” was. I saw a quote that says “Just because someone is on a different path than you does not mean they are lost.” That person who told me I was doing it wrong….she was wrong. She was very wrong. I have made a million mistakes, some bad decisions, said some words I regretted, hurt some people I shouldn’t have, and all of it has me right here, right now. And there’s no place else Im supposed to be.

My High School reunion was pretty cool. I saw people I hadn’t seen in a long time. And I realized they have each taken a different path to where they are. Some married, some divorced, some widowed, some with kids, some with no kids. Some who had tackled alcoholism, abuse, heart break…and some dealing with Brain Rot. And you know what…not one of them is doing it wrong. We are all doing it exactly how we know how. Exactly how we can. Exactly they way that is best for us right now. And a bunch of years of stupid, immature, judgement fell away. Just like a robe that falls to the floor. And my shoulders felt light and I knew all that had ever happened to me, around me, was all exactly what brought me there. And the trip was worth the kind words I got from an old friend about how my blog had helped them.
I am not super proud of every decision I’ve ever made. But I think you get to an age where you reflect a lot and my best friend & I hiked yesterday and did some reflecting. I work with teenage girls and people with weight issues. Self esteem and self acceptance are hard to come by in those two groups of people. And for me…it might’ve been hard to come by for a long time. But time has a way of rolling some pretty cool people into your path. And Im reminded of a Cheryl Strayed quote (of course) “PUT YOURSELF IN THE WAY OF BEAUTY MORE OFTEN”. And instead of dodging the scary things, the new people, the new experiences…I choose now to stand and let all the beauty that can possibly be, roll right into me. And Ive learned to like me…just the way I am. All the good. All the bad. All the weird.
All paths aren’t straight. All rules aren’t meant to be followed. All destinations don’t have a one-way-only-to-get-there map. In fact…I now know that most of the fun and most of the lessons and most of the love happen OFF of the path, on the roads not on the map, in the way of beautiful people who have something to show you. Crooked paths are so much better than straight ones. You scoop up all the interesting when you venture off the path.
Feeling grateful today for this moment in my life where I can jump on a plane to Texas when I want to. Go hiking when I want to. Stop into a tattoo shop on a Monday afternoon and get a tattoo when I want to. Maybe the good moments don’t throw themselves at you- maybe you have to look really hard to see them…but man…its worth the effort to look.
Maybe I was lost. Maybe I am lost. But I tell ya what….lost and wandering is a much better place to be than on a straight path to the same place everyone else is going.
Stronger than yesterday.
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WHY I HIKE

I am slightly obsessed with the movie “WILD”. You know the one with Reese Witherspoon where she treks across the Pacific Coast Trail to find herself. I’ve seen it a few times and for some reason I cry though the entire movie. I do not share the same “colorful” history as Cheryl Strayed. Well….not QUITE as colorful. But the theme of her hike. The reason behind it was that she was trying to “walk back to the woman her Mother thought she was.” And I get that.
I grew up in Texas. I lived there for 41 years. In case you’ve never been we don’t exactly have what you’d call “mountains”. So the fact that I’ve literally fallen in love with the mountains, with hiking, with trees and trails and dirt and long hours on the side of a mountain and boulders and gravel sliding and outside is pretty weird. I had no idea 3 years ago what the word “fourteener” meant. No clue. Im now obsessed. I think that when we are growing up, at least for me, there’s this plan you are expected to follow. College, job, marriage, kids. House with garage, a few pets and a mortgage and a schedule. A schedule. And it was what I wanted. I got it. I wanted kids so terribly bad and when we lost so many pregnancies I was devastated. I am beyond grateful for my kids. They are damn amazing. Funny, smart, witty, strong, smart-asses with opinions. All I ever want is for them to be happy. Thats it. And if that includes college & marriage & kids then great. If it doesn’t then thats great too. Happy is what matters.
Moving to Colorado was so scary. So. Scary. We knew no one but one friend. No family here. Moved across country to new schools, new weather, new people, new jobs, and the knowledge that I might be alone here someday. That’s some scary shit. Military families are amazing.  But as I’ve said before, when you wake up to a diagnosis like Brain Rot there are two paths you can take. And we took the one that was right for us. The scary one. The unsure one. The one where we just had to throw safe to the wind, grab on to the idea of not knowing. And there is not one single moment of regret. There are moments here and there that I tear up because I miss home. Texas is my roots. My family. My past. The place that built me. I am who I am because of Texas.
But moving to Colorado has opened a part of me that I think I knew was always there I was just scared. The part of me that wants to roam and travel and not have responsibilities and not have a mortgage and just write and wander. Hiking found that for me. Its funny my son says “isn’t hiking just walking?”. I suppose you can look at it that way. But…I grew up at about 500 feet above sea level. I don’t know how to explain what altitude sickness feels like if you haven’t had it. But I now LIVE at 7,400 feet elevation and my hikes most often take me well above 8,500 feet. It can do quite a number on the body. And climbing to 14,000+ feet elevation is QUITE an adventure. The lack of oxygen alone makes it difficult to say the least. Gasping for air WHILE bouldering over scary rocks and maneuvering barely-there-trails is exhuberating. Almost dying makes you feel very alive.
And there’s the terrain. Enormous boulders the size of which Ive never seen. The views. God I would hike JUST for the views. Never in my life have I seen such views. And I get to see them daily. The accomplishment of summiting a mountain cannot be explained in words. It is not a team event. You don’t rely on others. You can’t out-smart or out-perform a mountain. You can’t train for fear. Pure, raw, animal, biological terror that comes when you have to cross a very sketchy part of a trail that very well may lead to your death. People die hiking & climbing all the time. You bargain with the large rocks you step on…”please stay sturdy, please stay sturdy”. As you place your life and trust on this piece of nature that just doesn’t give a shit about you. Doesn’t it sound fun? And when you ascend to the top you know that YOU got you there. No one else. No team, no equipment, no shortcuts. Just you and a mountain and on THAT day the mountain decided to let you climb. Nature is bigger than me. I am just a speck of dust on the side of a mountain.
And searching for the words to answer the question WHY I hike I guess maybe theres a million reasons but perhaps its just that….that I am nothing on a mountain. I don’t have to be Mom, Wife, Business Owner, Leader. I don’t have to pay bills up there or think about Brain Rot or worry about all the things we worry about. All I am responsible for on a mountain is getting my ass up and down alive. No clutter. No homework. No technology. No noise. No complications. And I can feel small. There’s no ego on a mountain. It doesn’t care if you have great abs or are a Two Star Diamond Beachbody Coach. It doesn’t care. One bit. And I like that. No pressure to be all of those things. No pressure. Its funny but I breathe deeper and fuller and slower and more purposefully when there’s less oxygen. Makes me slow down.
I don’t know why it means so much to me. I dont know why exactly I love it so very much. I like Starbucks and cute jeans and dressing up as much as the next girl. But I have never in my life felt more at peace, more whole, more happy, more home, than on a mountain. I absolutely LOVE not knowing. Not having a plan. I LOVE it. And every time she lets me get up and down unharmed I say “thank you”. For all that I leave up there and all that I bring down.
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ALONE ON A MOUNTAIN

When I was 15 I had my first “boyfriend”. Then I had a boyfriend every year for the rest of my life. Before I met Patrick I spent some months alone. Going out with friends and to parties as a single girl. But other than those months there has been very little time since I was 15 that I did not have a boyfriend.

 

This past week was our Spring Break. What an amazing friend I have that let us use her family’s vacation house in the mountains, on a river for a few days. It was my idea of a dream. Hiking all day, beer at night, quiet, peaceful views of a full moon. And a lot of alone time on a mountain.
I think I always had a boyfriend because I thought being alone wasn’t ok. Or maybe I was insecure. Or unsure enough of myself. That I “needed” another person to confirm that I was worthy or lovable or whatever. I know there’s a lot of psycho-babble crap that applies. Im not sure I really liked myself all that much. I guess we all struggle with our self esteem. At least I did. Ive said this before but dear God I love my 40’s so much more than my 20’s or 30’s. I told my Mom yesterday before she left to go back to Dallas that I am happier now than I think I’ve ever been. Then I took the long way home from the airport. And turned the radio up very loudly and drove. Just drove. Alone.
There are not enough words on the planet for how much I miss my Dad. And how much I miss my Grandfathers. And how much I miss the guy I married. Lots of men gone. Or going. When Patrick & I first married we lived in Austin and hiked and biked every single weekend. We were very active. He did some biathlons and lots of bike races and we went to the gym a lot. I loved having a partner that enjoyed the same things I did. He is not that guy anymore. He is different. I love that he has a trike and can get out there on his own or with me chasing him on a 2 wheeler and do his thing. Have some freedom. But it is different. And I look at couples and sometimes get sad. Or hope they realize life is not promised.
It is the strangest thing to grieve someone when they are still alive. Your physical body is so much a part of who you are on this Earth that as it changes and fails you there is a grief. A loss. I remember when I realized I’ll never hike with my husband again. I’ll never climb a mountain with him. Ill never go mountain biking with him. Ill never do a lot of things we used to do. And even though you know Brain Rot will take those things it is still shocking how fast it all happens. It makes me sad. I rarely hike alone. I have a posse. My girls, my sisterhood of women is unbelievable. I cannot imagine life without them. I don’t know how a woman doesn’t have other women in her life. How lonely. I’ve always said…if a girl doesn’t have some seriously loyal friends, and I mean the kind that would bury the body and never tell, then she’s not the kind of girl I’d be friends with. I’ve buried some bodies. With some sisters. And it will die with me.
So I am so grateful for those hiking partners and friends and women and trouble makers. But I’ve never really REALLY hiked alone. I even took a partner up Pikes Peak. So this past week at the vacation house I decided I was going to go on a real hike alone. And let me clarify. I get the feeling some people think “hike” is synonymous with “walk”…. IT. IS. NOT. I ascend 2,000 feet in elevation at times, scurrying and bustling over large boulders on edges of cliffs. I am ready for mountain lions. I am at times lost. I lose the trail at times. I HIKE.
I took a long hike one day this past week. Alone. I got lost. I bouldered. I crossed the Arkansas River. I got scared. I lost the trail. I sat and had a cry. Then I got up and kept going. When I wrote about my climb up Pikes Peak last summer I wrote that instead of “finding” whatever I thought I was looking for on that mountain that I “left” some things instead. Things I needed to leave. Well. I think maybe I found some things on my Spring Break solo hike. I found out Im really strong. I found out I never “needed” a boy. I found out I like myself. I found out I will be ok. I. Will. Be Ok. Sad things are ahead. But I can hike alone. I can survive alone. I can do “alone”. I don’t want to. I didn’t want to lose my hiking partner, my biking partner, my security. But sometimes we don’t get the things we want. And falling down in the middle of a mountain to cry about it is ok. It is ok. As long as you eventually stand up. And keep moving. And I came out at the end of the trail, the hike, the bottom of the mountain, stronger than when I started the ascent. I went up that mountain alone. I came down that mountain alone. And I’ll do it again.
I wouldn’t change things about my early life. But I would certainly tell that girl how incredibly capable and strong she will be some day. And that she CAN. She can do it. When you can be alone with yourself, no one around, no one to share the moment or the view or the scenery or the feeling with and still be genuinely happy, genuinely filled with joy, contentment and PEACE….you have learned to live.
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NO PLAN B

There was a girl who never left the sidewalk. There was a girl who never colored outside of the lines. There was a girl who stood on the sidelines while others jumped. And judged them. I could’ve fallen off the curb, gotten a bad grade for the bad coloring, gotten hurt because I didn’t know what was over the cliff if I jumped. She was cautious and timid and nervous and anxious and sad. I don’t miss her.

Ive written about this before- Im sure I have. But I’m not going to go back through my blogs to see if I have because I don’t care. It doesn’t matter. When I want to write, I write. Whatever comes out. I promised myself that years ago when I started this blog…NO EDITING.
I am aware that my lack of schedule, lack of planning, lack of organization drives some people crazy…especially my Beachbody Team. God Bless them. Without Lori, Traci, Amy and a few others I’d forget my head. Grateful for amazing friends that compliment my craziness. When I decided to become a Beachbody Coach two years ago I made a DECISION. There will be NO PLAN B. My husband has brain rot. I don’t know how long he’ll be able to work. Or walk. Or talk. And there’s something about looking at your kids in the eyes and knowing…I AM THEIR FUTURE. IT IS UP TO ME…that gets your motor spinning and your pride thrown out the window. Balls to the wall or nothing at all. And that is how it has been for the most part. There are days…Lord there are days I curl up, cry, climb a mountain and want to never come down. But I do. I always do. When you’re a Mom you just don’t have a choice. And I don’t have a Plan B.
Years. YEARS I spent poo-pooing this whole “scam” of marketing and “selling” to your friends. I guess I just didn’t understand what it all was. I know I didn’t. Plus I was afraid. I have worked out to Tony Horton since 2008. I could’ve joined this Coaching gig 9 years ago. If I’d been braver. If I’d been less skeptical. If I hadn’t been afraid of taking leaps of faith. Could I kick myself for that? Yes. BUT. It has all worked out exactly how it was supposed to. A passion for fitness and helping others get & stay fit help motivate me. And the people I work with….not co-workers…FAMILY. They motivate me as well.
I spent last weekend being spoiled in Los Angeles by a company that TRULY cares about the health of this country. That knows there is no magic pill or shake or anything else that will make you healthy. Its hard work. Its getting off of your ass, moving more, eating less, and eating well. Thats it. Thats your magic pill. And I can get behind that 100%.
Now in 3 days my upline coach is treating me and a few other coaches to a weekend in Cabo San Lucas. Holy WHAT? For doing my job. I honestly think I might be dreaming some days. Unorganized, forgetful, technically challenged me…who would’ve thought it? You know who? ME!! Because I decided. I decided to jump before checking. Leap before looking. Stop worrying about the details. No one gives a shit if your pictures look perfect or your family looks all loving and sweet or your fitness is on point or if you have perfect wording or time things perfectly. No. One. Cares. You know what they care about- that you can relate to them. Thats it. I tell my coaches who are worried about making mistakes that they should be more worried about NOT making mistakes. Those that make no mistakes are never going to succeed. I make a 1,000 mistakes a day. And I own them. And love them. And learn from them.
I am absolutely no one special. No one who knows anything more than anyone else. So giving advice is a bit over confident of me. But I will anyway. If there is anything Ive learned. Anything Ill teach my kids. They’ve watched this journey first hand you know…its DO NOT HAVE A PLAN B. If you have one, you’ll know its there. Its a safety net. Its a back up plan. I no longer believe in those. At all. I know I wouldn’t be where I am if I’d had a Plan B. It is so beautiful, so freeing, to walk through life NOT KNOWING whats ahead. No plan, no spreadsheets, no time limits, no having to answer to anyone else but ME. Life is way TOO SHORT for me to be making plans ;).
Balls to the wall or nothing at all!
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LEAP BEFORE LOOKING

Dear Maddie & Andy,

So there’s a few things adults were wrong about. Things they told me when I was young or things I heard. Quite a few things actually but I can’t name them all. A few stick out. And I tell you these things now. That may be wrong. Whatever….as we all know I long ago surrendered my “parent of the year” award. First of all…YOU WILL NEVER EVER USE ALGEBRA. Unless you become some sort of mathematician, teacher, or some career Im too dumb to know the title of…you. will. never. use. it. And trust me….if by some crazy, rare situation occurs that I cannot foresee right now in which you DO need Algebra…..you can google it.

Second…brussel sprouts are disgusting. They are NOT needed for survival, should never have been meant for human consumption and if someone claims to like them you should not hang around that person.
That saying…”sticks and stones may break my bones but words will never hurt me”…..completely wrong and BACKWARDS. Physical wounds heal. Words hurt. Sometimes so deeply that they never heal. Choose your words carefully.
And most importantly….that saying “LOOK BEFORE YOU LEAP”. OK this is where I may get hammered. The following opinion is just that…an opinion…MY opinion. Its taken 43 years to come to this conclusion so maybe you should take 43 years to make up your mind about it but I do want you to know what I’ve learned.
I looked before I lept for a LONG LONG time. In fact…I often looked so long that I never lept. I mulled things over, thought them through, weighed pros and cons of leaping, had panic attacks over what if I made the wrong decision and lept when I shouldn’t….years of this. Years of anxiety over not knowing what decision was right. Worries and concerns about the repercussions of the decision I’d make. What if the leap failed? What if what was on the other side was awful. Or scary. Or worse…what if I FELL? How embarrassing. What if I regretted the leap? What if I hurt somebody or made a mistake or…..lord have mercy what if the PLAN failed. You always needed a plan. A well- laid- out- plan. And spreadsheets and graphs and charts and reasons to and reasons not to….it all needed an order.
And then a motorcycle accident and then Brain Rot and then Hashimotos and all of a sudden the leaping part seemed so easy. How silly. Why in the hell had I wasted so much time on the safe side pondering the “what ifs”. Time….its a funny thing ya know. One day you are 17 making out in the backseat of your car (I hope  my Mom doesn’t read this) and worrying if your “cool jeans” are clean for the next day then BAM…you’re 43 with 2 teenage kids a husband with brain rot and a WHOOOOLLLE lot of responsibilities. Time flies. It. FLIES!!!
So Im telling you there is not time to stand on one side and ponder and wonder and think it through. Im telling you to JUMP. LEAP. LEAP before looking. I know its counter-intuitive. I know it goes agains all of your instincts. I know its scary. But it took me 43 years to realize that you will NEVER EVER regret leaping. You will only regret the time you spent on the safe side wondering……trust me. It may hurt, you may fall, you may get your heart broken, you may fail, you may be embarrassed…in fact I can almost guarantee ALLLLLL of these things. And good Lord I hope them for you. Those are things that life is made of. THOSE are the things that make a heart a HEART, a human a HUMAN, and fill your soul with character. I have no regrets…minus any hurt I may have caused others. I have no regrets about the leaps I DID take. It is VERY true that the only regrets in life you have are the chances you DIDN’T take. So take them all. You may move far away…that hurts my heart…you may date people I don’t approve of…I know that, I accept that…you may make decisions I don’t agree with…as it should be. Find yourself, jump, leap, stray…I will always and forever support that.
LEAP BEFORE LOOKING. Because for all of the scary, horrible, frightening possibilities that may lie on the other side….there just might be something way freaking cool too…and its worth the risk to find out.
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LAWN CHAIRS AND BIRTHDAYS

I cannot believe you would be 63 today. That’s old. You’d think it was old. I guess I didn’t realize how young you really were. Im 43 years old now. FOURTY THREE. You died at the age of 53. Damn that is so young. So. Young. Not sure I can even picture you being 63. Less hair, more sentimental, more emotional, more nostalgic, still riding that Harley and RETIRED. Its sucks shit you didn’t get to enjoy retirement. I mean really. Thats just not cool. You’d have gone on a lot of rides with Dennis Im sure. You’d have taken Mom on more trips. You’d have gotten that damn pool because Mom would’ve won that argument and your grandkids would’ve loved it. I wonder if I would have left Texas.

As all great conversations are held over beer in a lawn chair on a driveway…..we’d have had an hour or so one today. We would have had red velvet cake and beer and turned the garage radio on and sat in the lawn chairs on the drive and solved the world’s problems. Dad there is a great possibility that the presidential race next year will have 2 women. Yes Im serious. I think its badass. I don’t care what your politics are its about time! Its funny I used to care more about politics. I don’t really give a shit anymore. Life’s too short and meant to be lived outside, away from the tv. I just don’t care about that anymore. We often disagreed on political issues but it was so fun arguing/talking to you about them. I have a feeling your granddaughter is going to change the world.

You would’ve been sad about Patrick. More than any of us I think. You were very much the most emotional one in the family. Well, except Kelly…you know that. Poor thing cries if you look at her funny. She got that from you. I’ve cried a LOT in the past 9 years Dad. Brain rot sucks. It so totally sucks. And motorcycle accidents suck. And cancer sucks. I don’t cry as much anymore. It doesn’t mean I don’t miss you. I do. Every single day. The pain of loss gets less INTENSE over time but it never ever goes away. And the funny thing is the longer you are gone the more I miss you. You would’ve offered advice on the driveway about saving enough money for me and the kids to be ok without Patrick. You’d have said “you’ll always have a place here”. I would have felt that security. I don’t have that now but Im ok. I promise. I often wonder if I’d have left Texas if you had lived. I don’t know the answer. I really don’t. But I do know I am right where I am supposed to be now. I found a strength in me I NEVER knew was there. You’d be proud of that. You would.

When UPS trucks drive by I think of you. When CCR comes on the radio I think of you. When Harley’s drive by I think of you. When Coors is around I think of you. When I open the spare room closet and your 3,000 Harley t-shirts are hanging there I think of you. When I start a conversation with “well lemme ask you this….” I hear you. Its funny. When I find myself standing on my couch with a clenched fist screaming at those damn Dallas Cowboys and everyone is looking at me like Im crazy…yep…I came by that genetically. By the way- you don’t even want to know how its going this season. I like all those little reminders.

Colorado is as beautiful and amazing and awesome as you always said. I wish you’d gotten to live here. Last year I went to where you had your accident. What a beautiful last sight you got to see. I see why you loved it here so much. Im going to climb every damn mountain, walk every trail, stare at every beautiful sight for ya. For Patrick. Because I can. Dad- I climbed Pikes Peak. Pretty sure you knew that. Leaving Texas was hard. Not as hard as it would’ve been to live the rest of my life and wonder. I hope you get that. I hope you know. Im sure you do.

Dad music is still shitty. The classics are still better. I choose Bob Segar and Fleetwood Mac and Zeppelin over current pop everyday. You’d be glad. Somethings just cannot be done better. I still choose beer over fru-fru drinks. I still don’t wear white below the waist after Labor Day. I still let the other cars leave the line first when the light turns green. I still check my oil consistently. I never leave home without money. And my friends laugh but I take toilet paper on every hike. I learned the importance of that from you and your sock story!

Maddie & Andy are amazing. You’d love watching them play soccer and watching Maddie cheer. I can hear you saying a thousand times how much you “loved watching me cheer” and this is “deja vu” and “time flies so enjoy every minute”. I am. I am.

I know you’d also say work less and play more. Im working on that. I get it now. I hope there’s a long winding beautiful road where you are and access to a low rider today. I hope you get to have a Coors too. I will. Happy Birthday old man. Until next year.

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THANK YOU

I am seldom at a loss for words. Last Friday night at a football game I was left that way. My daughter’s cheer coach secretly organized a surprise for my family. In all my life I’ve never, we’ve never received so much love and support. It is beyond over whelming.

The shit that comes with brain rot or any chronic, degenerative disease is enough but when you add the medical bills it only adds to the stress. To be honest I don’t think about the bills anymore. We try to concentrate on LIVING. And laughing and loving and traveling and appreciating the moments. Because when I think about the asshole at the Insurance company who decided Ataxia didn’t really require MRI’s or CAT scans or blood tests or a spinal tap or any of the other plethora of barbaric tests Patrick had….that this asshole gets to decide they wont pay for this stuff because its just not really necessary and they have no fucking clue what Ataxia is…I’d like to punch him or her in the face and ask how they can live with themselves. I cannot go there. I just can’t. No room or time for that and it does not promote a peaceful heart.

I instead focus on the fact that we have an amazing, caring doctor and time. TIME. More precious than I ever imagined it could be.

As I age I have let forgiveness come easier. I let “thank you’s” roll off my tongue without pride now, I let the little things go, I choose to concentrate on the good. But receiving is a new one to me really. To us. The amount of money that was raised for Patrick’s trike in such a short time is beyond description. And for both of us it is uncomfortable and weird and strange and joyous and crazy. It can seem a tad uncomfortable when people are GIVING to you. We are slowly learning to gracefully receive.

And we cannot express how grateful and appreciative we are. This trike is a physical way to have freedom for Patrick as well as a mental one and we’ll never EVER be able to express how kind , thoughtful, loving and appreciated this trike is. THANK YOU!

I may sell workout DVDs and Shakes and help people get fit but I know my job is much more than just a “coach”. That lives change and confidence grows and clients battle and win against depression when their physical body is healthy. That woman with major food issues come to ME for help in overcoming that. That fitting into your “skinny jeans” is much more than just “wow Im skinny now”. Its why I do what I do. Because it changes people much more on the inside than it ever does on the outside.

And a little cheer squad in the middle of Colorado might go unnoticed in most circumstances. We are not much different than the million other cheer squads in small town America. Friday nights, football, pom-pons, hair up in ponytails, tumbling, parents watching in the bleachers. But to me this little cheer squad is much more. Im betting most of them are. They are family and amazing and gracious and self-less and a major support system for my daughter. And together, in just over 24 hours, they raised over $7,000 for a trike. So one guy could taste some freedom again.

Inside most people is much more than you’ll ever see on the surface. Thank you to our community, family, friends, and to Jessica & the Palmer Ridge Varsity Cheer Squad and their parents! Ride On, Patrick! 🙂

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THE GOODBYE BEFORE THE GOODBYE

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!

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BECAUSE YOU ASKED ME TO

What do you get when you climb Pikes Peak? I think that was my question before. My goal. My destination. My whole purpose (so I thought) was to climb that beast and get some answers. Whether it comes across or not I do believe in God. I am not religious- never will be. And I don’t do “the God thing” like most. I used to care what others thought about that. Some people certainly let me know I wasn’t “doing it right” in their opinion. And I certainly do not care any longer. So maybe I thought God was going to magically fling down some answers at me. “Speak” to me through the mountain. Let me know WHY. WHY I had so many miscarriages. WHY my Dad was killed so young. WHY my daughter has a chronic condition. WHY my husband got brain rot. WHY my second Mom, Lynda has cancer. WHY. I needed answers. And I thought the mountain would shout them to me.

Let me talk for a minute about the climb. I am in decent shape. My Beachbody workouts, eating well, drinking Shakeology and hiking often got me in pretty darn good shape. Better than in my 20’s. But there is nothing. NOTHING. That can prepare you for climbing Pikes Peak. I live at 7,400 foot elevation. So the trail begins at around 7,500 feet and the summit is 14,110 feet. That’s a HUGE elevation gain and would prove to be the biggest obstacle for me. I pulled my groin muscle around mile 3 and at mile 4 the cracked vertebrae in my neck were screaming. It was horribly painful. Every damn step it hurt. A LOT! I teared up a few times from pain. And let me tell you- a mile on the ground is one step compared to a mile climbing up the side of a mountain. I have never, ever, done something so physically difficult in my life. The last 3 miles above the tree line were the hardest. Treacherous man. Scary and hard and very little oxygen and slippery rocks and it looks like the top of the mountain is forever away and you are just out there. You are a speck on the side of an enormous structure. You feel like nothing. And I realized something at one point when my partner asked me to just “stop”. “Just stop Jennifer and look back at what we’ve done, how far we’ve come….YOU DID ALL THAT”. It makes me cry even typing it. I was so focused on the pain, and the miles and miles of height and rock above me I had not looked back at all. That view. I cannot – I wont even try to find words for it. But all of the symbolism on the many miles of path behind me is not lost. Magnificent views 360 degrees around me. Water and rocks and green trees and desolation and a height you cannot believe surrounded me. I could see snow while I was sweating. I felt exhilarated and motivated while completely physically exhausted. I never had a doubt I’d summit. But I had no idea how hard it would be. And looking back is sometimes necessary because you focus so much on GETTING there, reaching the top, finding a solution, finishing, how much MORE you have to go……that you forget to celebrate all the way you’ve come.

So thank you Susie for reminding me to stop and look back. And be proud. And know how far I’ve come.

So we cranked on. We could not talk much those last 3 miles as we were gasping for thin air and it was hard to breathe let alone talk. So as the summit neared I felt excited. That the top, the answers, the ending, the finality of it all was so close. Just around the corner. And I cried a bit. Just a bit. I walked into a sea of tourists who were taking pictures and eating Pikes Peak donuts and mingling with their families and complaining about their “altitude headaches.” They had driven up here. They barely noticed me. I was one in a crowd. They had no idea I had just WALKED up the mountain they’d driven up. I hugged Susie and I stood there quietly. Waiting for the trumpets and the balloon release and the fireworks and the SHOUT of accomplishment from above. I’ve never been so physically exhausted in my life. My body was just about to give up. It had been pure will power, adrenaline and mercy that got me through that last mile. But there was no shouting. No balloons. No fireworks. And instantly I gained a lifetime’s worth of knowledge. I grew up in that moment. It hit me. Two things really. As Glenda the good witch in The Wizard of Oz said “it was in YOU the whole time”…there were never answers ON the mountain. They were in me all along. And damn it- it was never about what you GET from the mountain. The things you find out or the things you gain…..It was always about what you LEAVE on the mountain. Sometimes….sometimes the things you let go of are vastly more important than the things you grab on to. And you can let a LOT go at 14,110 feet on top of America’s Mountain. A. LOT. And I let a lot go. A lot of things I needed to let go of. And dammit it feels so good. So light.

My body aches today. The day after. I feel every bit of 42 years young. In so many ways. Do you know that sometimes there just aren’t answers to every question. There’s just not. And you have to let go. Let go and be ok that you may never know. And as cheesy as it sounds I TRULY now know its all about the climb. Don’t get me wrong- that SUMMIT IS AMAZING. Nothing like the feeling of that last step. Nothing. A pure raw joy Ive never felt before. One of the greatest physical accomplishments I’ll ever make in my life for sure. And my friend, Erika’s words to me rang in my ear “Girl you fight way bigger battles on the ground- that mountain is NOTHING”. It was never about the summit. It was ALWAYS…ALWAYS about the climb.

I can do hard things. I CAN. I have more tears today than I had yesterday. I think it just took a day to hit me what I’ve done. I cannot thank Susie enough. I cannot thank Patrick enough. I cannot thank those angels I met on the mountain along the way that encouraged me enough. I cannot thank you all enough for your support and encouragement. I gained and lost more than I ever dreamed I would up there! Dream BIG!

I did it, Dad.

“I went up to the Mountain…Because You asked me to. Up over the clouds, to where the sky was blue. I could see all around me. Everywhere. I could see all around me. Everywhere”. ~ Patty Griffin, ‘Up To The Mountain’

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