Monthly Archives: September 2015

THE GOODBYE BEFORE THE GOODBYE

September 25, 2015Uncategorizedataxia, brain disease, brain rotfallingbackonfunny

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!

A MILE IN MY SHOES

September 8, 2015Uncategorizedhiking, mountains, shoes, trailsfallingbackonfunny

Marilyn Monroe once said “Give A Girl the Right Pair of Shoes and She’ll Conquer the World.”

I’m pretty sure she meant some amazingly beautiful high heels that were so sexy only SHE could walk in them. And she conquered the world in her way. I love beautiful shoes. Its one of my downfalls. Love them. Some gorgeous Jimmy Choos or Manolos or even a crazy sweet pair of riding boots. One of my favorite shoes of mine is my Steve Madden cowboy boots I wore all during Beachbody Summit in Nashville. When you put on a pair of shoes they transform you. They decide what you are going to be that day. Most days I live in my workout cross trainers. They are comfortable and stable and they make me feel strong and healthy and remind me of what I am. What I do. How I help people and keep my physical body fit and well. Putting them on my feet makes me know I am going to either dance or lift weights or do Isometrics or push ups or any and all of the above.

My old school Converse are very me. Laid back, casual, able to be worn with anything. And I am most me, most comfortable in a t-shirt and old jeans with my Converse. I know lunch with friends or running errands or shopping or going to the kids school functions or a drive with the husband or a football game or soccer game is in the cards.

Flip flops are more common in Colorado than you’d think. And mine are glittery- of course. And they remind me of Texas and hot weather and swimming pools and lakes and 4th of July and shorts and make me smile. I know I pay more attention to my pedicure during sandal season. Love my flip flops.

My cowboy boots are awesome. And beautiful. And rustic and weathered looking and black. And they make me feel good. They make me feel like I live in the country and they go with dresses and jeans and shorts and pretty much anything. And there is something strong and grand about a good pair of real cowboy boots. Something quiet and strong.

I never owned a pair of trail shoes, hiking shoes, Merrels, until I moved to Colorado just over two years ago. When we first moved here my husband decided we needed to “Colorado-fy” ourselves. We bought thick coats and real mittens and scarfs and crazy gear for cold weather I’d never seen before. We didn’t need that stuff much in Texas. One of the purchases was a pair of hiking shoes. Because he decided we were going to hike a lot. One of the reasons we moved to Colorado was to live more outdoors. We did not know how much time brain rot would allow for him to be physically active. And we were 100% in. Lets do this Colorado thing. All the way.

So I started researching hiking shoes and asking people and had done a few short hikes in my Nike Tennis Shoes enough to know that THAT was not going to cut it. I needed REAL hiking shoes. And I was clueless. Again….not many mountains in Dallas. I think I tried on a million pair. Until I found mine. These Merrels. These brown, ugly, old lady looking Merrels. They sure felt good and in this case form & function was way more important than looks. So we invested. I got the good hiking shoes. And for two years I have worn them WAY more, exponentially more than I ever dreamed I would. I had absolutely no idea how important hiking would become to me. How huge a part of my life it would become. What it would represent and lead to. I cannot count the number of hikes I’ve been on in two years.

I’ve hiked with my kids, with my husband, with dear friends, with strangers, and alone. And always…always….with my Merrels.. The one constant. Every hike is different. Some are for escape from reality. Some are for friend time and gossiping. Some are dates. Some are to listen to my kids TALK. Some are because I NEED to be outside. And maybe a few are for exercise. They all feed my soul. They’ve all been necessary. Some hikes are short and easy. Some are treacherous and scary. Some hurt. Some take me way longer than I expected. Some slap my ego down a few notches. Nature can be a bitch. I am no match for her. Just grateful she lets me play on her playground.

My shoes are two years old. I hiked Friday and one of the friends I was with said its a good idea to get new hiking shoes once a year if you hike often. I kind of got quiet and thought about that. Before my Pikes Peak hike I had thought about getting new shoes. But I didn’t want to worry about breaking them in and I KNEW my Merrels would get me through. I knew I could trust there’d be no blisters, no tired feet, no aching, and even when they are wet and muddy they still keep my feet dry and happy. So my Merrels took me up Pikes Peak. When my groin muscle pulled and screamed and my neck hurt so bad I cried and my shoulders were burning and my head hurt…..my feet kept going. My feet never hurt. My hiking shoes were rockstars.

I have some pretty cool shoes. Some pretty gorgeous heels and boots and I love getting dressed up so much you just don’t know. Thats become more rare since moving to the mountains. And in a million years I never thought that if this Texas girl was asked to pick her favorite pair of shoes it would be my damn ugly ass hiking shoes. But they are. The past two years have brought so many changes. New friendships, progressive disease, new jobs and opportunities, new schools, broken hearts, disappointment, joy, adventure and so much more. And every hike I take is the medication, the stress relief, the antidote to life. And all the shit. I cannot ever imagine again a life without hiking. And I need new shoes. I need new hiking shoes. Mine are worn out. And they’ve done there job. Very well. But I want to keep hiking and breathing and laughing and gossiping and making friends and seeing new trails….so I’ll get a new pair. But I’ll keep these forever. Who gets sentimental over shoes? Damn it. I guess I do. Especially when they are so much more than just shoes.

FRIDAY NIGHT LIGHTS

September 2, 2015Uncategorizedcheerleaders, football, texasfallingbackonfunny

I’ve had a few people tell me us “Texans” think we are a country in and of ourselves. That we think we are special. That for some reason we think Texas is “better than” the other states. And they can’t quite figure out WHY we think that. Of course they can’t. You’re either born in it or you’re not. You can’t explain it.

So living in Colorado has opened my eyes to the fact that there ARE other states in America! Of course this is all in jest and Im mostly being sarcastic. I absolutely love Colorado. I don’t think there’s a doubt about that. I belong here now at this point in my life. It is amazing and beautiful and peaceful and I cannot imagine leaving. I am happy. HAPPY! But make no mistake I am a Texan. Fifth generation born and raised there. There are so many stereotypes about Texans. Pretty sure I bust apart all of those stereotypes. Funny. I don’t think it gets more TEXAN than me and I don’t fit MANY of the stereotypes. I do, however, fit a few…..

On Friday nights, in the Fall, in Texas, there is a religion we follow. A drum beat we all march to. A fellowship of sorts that is hard to explain. And I was beyond privileged to be part of that tradition. Friday night High School Football. Until the age of 40 I thought that all High School Football Stadiums would seat over 10,000 people. I thought all towns shut down on Friday nights. I thought all schools dismissed a tad early on Fridays so the Band, Drill Team, Twirlers, Coaches, Cheerleaders and Football players could board the bus and get to the field early for warm-ups.

I cheered at every High School Football game in High School. And until I graduated from High School and went back I had NEVER seen any other perspective of a game in person except from the sidelines. I never really thought about that. For four years as every game was played I stood eye level to the field. I stood below all of the spectators and parents and watched from behind the team. I stood steps away from stinky, smelly, football-pants-wearing players. And believe me that has it’s positives as well as its negatives ;)-.

I only saw plays THROUGH the gaps in the players as they sat on the bench or stood and ran and cheered as we moved the ball. I heard all of the curse words and speeches the coaches were blaring at the players. My feet only touched that rubbery, knobby red track material…unless we were performing at halftime on the field. I never sat in the stands. I never knew what that experience was. It’s funny how different a football game can look depending on your perspective. I’m lucky I had the one I had. And a few times I got a pretty good birds-eye view when I was on top of someones shoulders or on top of a pyramid. This morning on the way to school I asked my daughter if she was excited about this coming Friday night…she said “yes but I don’t get to sit and talk with my friends in the stands”. She has no idea. NO IDEA how great of a “seat” she will have. She will quickly figure that out.

This Friday night is our local High School’s opening game of the season. I will be in the stands. Watching from a different perspective. And by that I mean I will not only be watching from the bleachers with the other parents now….I’ll be watching AS a parent. My daughter will cheer at her FIRST VARSITY football game Friday night. On NO planet does it make sense to me that I have a kid in High School. How the hell did I get that old that fast. Funny- in my head Im still the same girl. Maybe a tad more mature….MAYBE! :)-

I LOVE football. I always have. I watched the Cowboys from the time I was born. When you are a fifth generation Dallas-ite that is what you do. It is engrained in me. Football really is a metaphor for life. The grind, the hard work, the discipline, the aggression and patience, the team work, the camaraderie, the fighting through the pain. I hope she will love it as much as I did. I hope when the band plays the fight song and the lights come on and the sun goes down and the players run out and the people cheer that she will relish every second. I might be more excited than her about this Friday. Maybe that’s because I now know how special it is. I now know how lucky I was to grow up with it.

I took one of those dumb Facebook quizzes recently called “How hippie are you”. I got 50%. And it did not surprise me. I am a peace loving, pot legalizing, nature loving, save the environment, pro gay rights fighting, German car loving, big mouth. But I am also a football loving, competitive, ball crushing, pray before a game, protect my property, kick your ass in a parking lot kind of girl who once owned a Harley. Now go figure THAT out….because I STILL haven’t. In a day and age where so many things separate us…football unites us. If even just for a few hours on Friday nights in the Fall.