Next Level Extreme Fitness

How I am learning to "Do Better. Be Better." after the cavernoma malformation in the pons of my brainstem bled.

Friday, October 24, 2014

ONE YEAR ANNIVERSARY!

Do you know what today is?  No, it's not hump day.  ;)  Today is my one year anniversary!  I have lived one year stroke free.  It has been one year since my life changed forever.

I wrote the above paragraph on October 1, 2014.  I panicked as soon as I finished it because I thought I would jinx myself by jumping the gun on my anniversary date.  So I quickly logged out.

Today is October 10, 2014 and I find myself feeling the need to write.   I am not sure why.  I feel good, life is good, everything is good.  I was just drawn to my blog.  I read the first paragraph of this post and laughed at myself.  Really, Jamie??  Really.  You want your one year anniversary post to begin with a hump day joke?

The funny part is that I have been staring at my computer screen for twenty minutes since I reread that first paragraph.  When I ask myself what the last year has meant to me or how it has changed me, my mind instantly fills with a million memories, my heart aches as it relives the emotion, and my eyes well with tears.  I am not overcome with words, but rather feeling.  I am unsure how I can adequately describe this entire experience.  I should probably start by calling my stroke something other than an 'experience.'  Because it is not this 'thing I did once,'  It is my reality.  It is my story.

It is my life.

I have the popular Timehop app on my phone.  Everyday I receive a notification on the history of that day in the past years.  Lately I have obviously been notified about events that occurred very close to the date of my stroke.  These pictures and the words that accompany them make me smile because they are happy memories.  But they also break my heart and even make me tear up a little.  I look at these pictures and I see the time when life was easy; when I stressed about normal, irrelevant things.  A time when I looked normal and was healthy.

A time when I thought I was invincible.

Don't we all think that sometimes?  The infamous thought of, "That would never happen to me."  I did.  Especially since I was doing everything in my power to ensure I would have a healthy, long life.  I exercised, ate well, and got plenty of sleep.  But yet in one second everything changed and there is nothing I can do about it to change it back.

One of my greatest struggles to overcome this last year has been the loss of power and control over my own body.  The first few days I was in the ICU and stroke recovery floor I knew that my senses, functioning, and vision had been affected immediately.  However, I had no idea how bad until I had my first OT and PT session at the U of I toward the end of that first week.  In my first OT session, the occupational therapist asked me to tie the draw string on my pants.  For one minute I tried feverishly to tie that string and was sweating by the time I finished.  I looked down and just watched my hand
fumble.  My fingers couldn't even hold the string, let alone manipulate it.  I couldn't sense or feel the string in my hand.  I was trying to tell my hand and fingers how to move but I didn't even know what to tell it to do.  I had never had to instruct my hand on how to function; it always worked on its own.

What do I even tell it to do?

Right after my OT session came my first time with physical therapy.  We walked a total of maybe 30 feet and I was gassed by the time we finished.  I couldn't feel my left foot impact the ground and I could not hold myself upright on my own without falling to the left.  I have been very active and decently athletic my entire life and I couldn't even walk myself 10 feet to the bathroom without feeling like I had just ran a marathon.  

How am I going to do this?  What if I never get better?  How am I going to care for my kids and be the mom they need or the mom I want to be?  How am I going to be the wife and partner Patrick needs?  How is our family going to survive this?  How am I going to return to work?  Will I ever be able to exercise again?

How am I going to live like this forever?

Then came the first time I looked in the mirror.  My right eye was turned in towards my nose, wouldn't move laterally, and barely would blink on its own.  I had to wear a clip on my glasses to prevent double vision.  I was mortified.

How could Patrick even find me attractive anymore?  What will my girls think?  How am I ever going to be able to face anyone again?

But these things didn't even hold a candle to the debilitating fear I had about what my stroke had done to the innocent baby growing inside of me.

It is now October 15, 2014.  I broke down after I wrote the sentence above.  I started crying and couldn't stop and gave up on this post for a few days.  To this day I haven't really wrote about that part of my story yet.  I never will.  It is the part of my story that is only for Patrick, me, and our girls.  But today I scrolled through my Facebook news feed and noticed that it was Pregnancy and Infant Loss Remembrance Day and it brought me back to my blog.  I have never miscarried or lost a child so I cannot relate and will never pretend to.  But, I do understand the agonizing fear of the waiting game of a high risk pregnancy. Nervously staring at the ceiling at every pregnancy check-up and ultrasound praying that growth is normal.  Panicking for a two hour car ride to the hospital because your scared you may not make it through delivery and never meet your child.  Waiting anxiously for every doctors checkup hoping that now that they are here, they stay healthy, develop normally, and live a happy life.

The game where I constantly pray that my stroke did not harm Myah.

And that was and always will be my greatest fear; that my stroke will ruin the lives of the ones I love.  I am mentally strong enough to handle the limitations I experience.  I can live with my double vision and crooked eyes, the stiffness in my left hand, the heaviness of my left foot, and the slightly impaired functioning that I still experience.  It is what it is, I can't change it, and I am just learning to make it my new normal.  BUT, if any of those things EVER affect my family or friends negatively, I am not sure I would be able to deal with it.  If I ever get to the point where I am disabled enough that I cannot pull my own weight or my deficits cause my daughters to be embarrassed of me......well, I would have become a whole new kind of mentally tough to be able to survive it.

It is now 3 a.m. on October 19, 2014 and I can't sleep.  Yesterday was one of the worst days I have had since my stroke.  I have begun to call my bad days, 'stroke days.'  I have not had the courage to write about a stroke day yet for many reasons.  And after yesterday I realize I am still not ready for that yet.  Yesterday was a stroke day on steroids and by the way the night is going I am afraid it might continue into tomorrow.  So in true fashion I am writing and praying that it will help me shut it down.

I have tried very hard to remain positive, uplifting, faithful, and strong throughout this last year.  I like to end each post on a positive note and with a fighting spirit undertone.  People have responded to that and, as a result, many blessings have been brought upon our family that I will be eternally grateful for.  But on the other side of that coin is the pressure I feel to constantly be 'on'; to never show the fear or worry that I occasionally do.  Sometimes I just need to have a bad day.  A day where I can admit how shitty it was to have a stroke, fight to get my life back, and live with a rare brain condition that could potentially cause it to happen all over again.  A time where I can feel it for a bit without seeing the pity in people's eyes or having someone immediately suggest I go to therapy.  I am allowed that after everything I have been through. 

Tomorrow begins the week that my life forever changed.  The Sunday prior to my stroke the Garbes side of the family celebrated Jaelyn and my mom's birthday.  That night is when Jaelyn started feeling ill which was what led me to believe that I had contracted the flu from her.  Low and behold we are celebrating their birthdays tomorrow which has me a bit freaked out.  Monday morning, at 9:35 a.m. will mark the one year anniversary of when I felt my head pop and about passed out as I walked through the weight room at school.  Parent teacher conferences are also this week.  Last year I didn't attend them because I was beginning to experience stroke symptoms.

Please.  Please God just get me through this week.

It is now October 20, 2014 and my 'stroke week' has started.  I made it past 9:35 a.m.  I was leading my students through a yoga routine as I watched 9:35 a.m. come and go.  I held my breath to fight back tears.  I returned to my office to find a text from Patrick at 9:36 a.m.  I am sure we were both watching the clock at the same time.  This is admittedly going to be a week full of tough memories for both of us.  Him and I will undoubtedly need to hold each other up to make it through it.

To say that the last place I want to be is at work this week in an understatement.  But life goes on.  Time passes, the seasons change, and we all age and change right along with them.  I can't be stuck in that week of October 2013 forever.  I need to keep moving forward and living my life.  I need to focus on the present rather than the past.  I can visit those memories, but I can't unpack and live there.

So I am going to do my best this week to celebrate my accomplishments, my health, and my family instead of drown myself in memories of the scariest week of my life.

It is now October 24, 2014. I have the day off of work today and I am began my 'strokeaversary' weekend with a full day at the spa.  This weekend Patrick and I will be heading to Clear Lake to spend some quality time together memorializing this last year.  Monday begins a new year.  A year that is full of happiness, blessings, and rejuvenation.

It is probably apparent at this point in this post that the last year has not been all butterflies and rainbows.  It is has been hard.  Harder than what most probably realize.  But, here's the thing: I am a fighter.  I have learned to take a challenge (if that's what a stroke is called) and kill it.  

Every step of the way I have had to start from the bottom up.  My physical limitations were stifling but my focus had to remain on everything I still had.  I had my memory, my cognitive functioning, my family, and my friends.  But, most of all, I was alive.  I could have died, but I didn't.  I didn't die.

I sure as hell wasn't going to act like I had.

I had a very clear picture in my head of what I still wanted my life....Patrick's life, my daughters' lives.....to be and I wasn't even close to ready to let it go yet.  I was 32--I had just started.

In the early stages my doctors always told me that I would experience the most improvement in the first three months and by the time a year hit any remaining deficits I had would be permanent.  I remember laying in my hospital bed dreaming of what my life would be like in one year.

How normal would I be?  

So began the battle of fighting back.  The struggle to remain faithful in God and believe my doctors when they would reassure me of Myah's health and the probability of my recovery.  The constant effort and mental strength needed to concentrate only on my improvements rather than everything that was still broken.  The desire to want to live even though my life had taken a different route than the one I had mapped out.

My will to LIVE was stronger than any challenge I faced.  I am happy to report that a year later I would classify myself at 95% normal functioning.  My largest deficit is still my double vision.  I do have stiffness, decreased sensation, and slight loss of fine motor functioning in my left hand.  My left leg is still a bit heavy and mechanical but doesn't prevent me from doing much of anything.  I am back to work full-time.  I am also the same wife and mother I always was and dreamed of being, if not a better one.  I am back at Next Level Extreme Fitness with no modifications other than I do not pull as much weight as I used to just to be safe.

Simply put:  MY STROKE HAS NOT STOPPED ME.  And if it is within my control, I WILL NEVER LET IT.  

I realize that I am incredibly lucky to be alive and be as well as I am.  My hemorrhage was very large and occurred in the most critical part of the brain.  I understand how damaging and life threatening another stroke and brainstem surgery could be.  I would like to believe that my outstanding health and mental strength carried me throughout my recovery, but I also recognize that there was a lot of luck and God's mercy involved.  I have no idea why I was spared or why I was blessed with an unimaginable recovery.  I do know that I am not going to spend the time I have been given asking why. 

I want to spend my time doing better and being better everyday.  I want to see the beauty and positivity in every situation.  I want to learn and grow as an individual, wife, mother, daughter, sister, and friend.  I am going to appreciate every moment I have and every person that fills them.

If you have followed my story and have been reading my blog, you know of all the blessings that have been bestowed upon my family and I.  This post would go on for many more paragraphs if I mentioned them all, so I will refrain.  My writing has been a tremendous form of therapy for me and I have learned much about myself with every word I have scribbled.  You may have even learned a few lessons right along with me as you have read them.   

I do not know where I will stand medically a year from now.  What I do know is that I have an amazing support system; an amazing army.  If you would have told me that my life would look the way it does now a year ago after having a severe stroke, I would have laughed at you.  Life has taken such an inconceivable turn.  A turn that is better in many ways than it is worse because of all of YOU.  You have all made this year better than what I could have ever imagined it to be.  I am forever grateful for your support, encouragement, and love.  I will never be able to repay you all for everything you have done for my family and I.  What I can do is show you through my actions how much you have all inspired me to change and grow.

I can DO BETTER.  I can BE BETTER.

Cheers to ONE YEAR beating my stroke.



Some of our family photos taken October 2014 by my brother, Nathan!




















      

Tuesday, October 14, 2014

First Annual "Do Better. Be Better." Color Dash

Saturday, October 11 was the first annual "Do Better.  Be Better." Color Dash.  Portions of the proceeds raised will go towards a scholarship for a graduating senior at Dunkerton High School, my alma mater, and Cedar Falls High School, my place of employment.   The race will be hosted by Cedar Falls High School next year and held in Cedar Falls.

Before I go too far, I would like to thank Justin Urbanek, Dunkerton Leadership, the City of Dunkerton, Dennis Magee, Kelli Snyder, Erin Gardner, and Cedar Falls Student Senate for all of their hard work organizing this event.  I also want to thank everyone who participated in the run or donated.  

In my previous post, Jamie Smith's "Do Better.  Be Better." Foundation, I wrote about how I learned of the color dash and how absolutely humbled and honored I was.  It is just absolutely wild to think about how much my life has changed!

The day was absolutely gorgeous and perfect weather for a run.  My family and friends all picked up our registration packets and got suited up.  Then, of course, the picture taking began!





Shortly before the race, Dunkerton's principal, Justin Urbanek, welcomed us all, explained the purpose of the event, and introduced me.  I said a few words about my condition and recovery and it was time to start the race!

The route took us through town.  Spread sporadically throughout were students from the Dunkerton Leadership Group and Cedar Falls Student Senate armed with color packets that they threw on us.  Seeri rode her bike along side Patrick as he ran.  Jaelyn and Linden walked with me, my mom, sister-in-laws, and brother.   The girls were a bit reluctant to run through the color at first but quickly grew to love it!  Eventually, Jaelyn decided she wanted to run and took off with my brother.  At the end of the race everyone who participated threw a bag of color in to the air to create a giant color bomb.

 

IT WAS SO MUCH FUN!  I enjoyed the quality time with my family and friends and reveled in the giggles and excitement of our girls.  It meant the world to me to have all of them there supporting me and the scholarship fund.  It was simply perfect.  That is the best way I can describe it.

It was a perfect day.