Tag Archives: brain rot

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!

BECAUSE YOU ASKED ME TO

August 10, 2015Uncategorizedataxia, brain rot, dreams, hiking, mountains, pikes peakfallingbackonfunny

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’

F you Monday

July 27, 2015Uncategorizedataxia, brain rot, family, kids, life, momsfallingbackonfunny

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!

BRAVE

May 5, 2015Uncategorizedataxia, brain rot, bravery, colorado, family, moving, texasfallingbackonfunny

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.

SILVER LININGS, COOL DOCTORS AND HOPE

January 13, 2015Uncategorizedataxia, brain rot, doctors, hope, SCAfallingbackonfunny

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….