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 23, 2015

Two Year Anniversary

FEAR.

I wake startled and disorientated, much like after having a nightmare.  Instantly, I sense that something is very wrong.  An intense pressure fills my head and its weight is so insurmountable that I am not sure if I can muster the strength to lift it.  My left arm and leg, equally as heavy as my head, have a tingling sensation coursing through them.  I panic as I realize that my face from the nose down is also tingling.  Instinctively, I open my eyes and immediately regret my decision.  It seems as though the room is spinning.  I cannot keep my eyes open long enough to determine if the objects in the room are moving or if I see numerous images of each object.  The baby, I think as my hand reacts to my thought and settles on my stomach.  It's so early.......I quickly push the thought away as I am too scared to even think about it.

In effort to distract myself, I try to maneuver myself in bed to grab my phone and check the time.  I reach once and fail.  I shift a bit further in bed figuring that I have just missed it and try once more.  I still miss.  The third time I open my eyes.  I quickly realize that I haven't been missing, but rather my left hand is physically unable to feel or grasp my phone.  I look at my hand; it looks like my hand, but it feels foreign and disconnected.  Something is severely wrong.

Patrick.  I need Patrick.

"Patrick." I say loud enough for him to hear me from the living room, but soft enough to hide the panic I feel.  "Yeah," he says as he walks around the corner.  "Something is wrong.  We need to go to the emergency room," I say flatly.  "My left side is tingling, the room is spinning, and I can't pick up my phone."  Patrick begins to move with urgency.  He quickly carries Seeri to the van and packs for the trip to the hospital.  I remain in the bed, stranded and helpless.  Violent nausea consumes me if I try to move or open my eyes.

Patrick returns shortly after with my shoes.  I feel my leg being lifted, but I cannot feel the touch of his hand.  Instead, it feels as if a ball of small nails are being rolled along my leg.  "Is my shoe on?" I ask, dreading the answer.  "Yes," he says softly.  I hear the fear in his voice.

CHOICE.

My mom kisses my forehead.  I hear her breath catch as she tries to fight back her emotion.  My dad goes next, silent and stoic, just like on my wedding day.  As they leave, they both tell me they love me and to rest.  I can sense that there is so much more that they want to say, but can’t.  My nausea has finally subsided, but I still can’t move or open my eyes.  I know there is something seriously wrong with both my vision and my left side at this point.  I can’t even feel the blood pressure cuff tighten around my left arm.   

At this point, I have no idea what caused my stroke.  I have listened to doctor after doctor come in and tell my family members about my bleak prognosis all while I lay in my hospital bed, eyes closed, and unable to even roll over on my own.   How can I possibly comfort them?

“I’m going to be okay,” I blurt out.  “I am strong and I am a fighter.”  

This will NOT be my life.  I WILL fight.  

HOPE.

I sit at the edge of the bed.  I take pride in that.  The steady growth of my belly from my pregnancy in combination with the deficits from my stroke makes every movement labor intensive, mentally challenging, and uncoordinated.   The last two and a half weeks have taught me more about myself than anything I have ever experienced.  My faith, mental strength, courage, and positivity have all been challenged.

My PT asks me to stand; an act that becomes a bit easier every day.  He secures the gait belt around my waist as Patrick, him, and I exchange pleasantries.  His final tug gives me the cue to start walking to the physical therapy gym.  This too is becoming easier every day.  My sensation is starting to return a bit and all of the exercises we have done have helped me regain some of my balance.  As usual, Patrick and my PT talk all the way to the gym as I focus quietly on the task at hand.  The nurses, doctors, and therapists all greet me with happy hellos and big smiles.  This is not anything new, but I see their eyes linger a little longer than usual.

Could it be?  Am I really feeling what I think they are seeing?  I don't think my PT is holding on.  Am I really walking on my own?

We arrive at the gym and I walk to the bench.  I turn in a 180, back up until I feel the back of my legs touch the bench, and slowly sit.  I look up to the glowing faces of Patrick and my PT.  Instantly, I know.  I did it.  I walked on my own.

BLESSED.

My eyes are closed.  I think only of taking deep, slow breaths to regulate my heart rate and blood pressure.  And I pray.  I pray fervently.  I feel the warmth of Patrick's hand and hear the hustle and bustle of the operating room.

Then I hear her.  

Her beautiful cry fills the room and tears immediately fall from my eyes.  Patrick squeezes my hand, kisses my forehead, and whispers, "She’s here.  You did it."

PURPOSE.

I feel her shoulders shake softly and her voice quiver as she whispers thank you after thank you to me.  She pulls away, holds my hand, and begins to say a prayer over me.  I struggle to hold my composure.  Every piece of me knows in this moment that this was God's plan for me.  Finally, I surrender and let the tears escape from my eyes.

******************************************************************************

I wrote the above on October 7, 2015.  It is now October 8, 2015.  It is a beautiful day; it is Jaelyn and my mom’s birthdays.  This is also the anniversary of the day that my friend’s son was diagnosed with cancer.  And as of an hour ago, it is now the day where I found out that my dear friend had a brain aneurysm and will be undergoing surgery this afternoon. 

Life can change in an instant.  I have lived it.  And when you have experienced something like that, the memories, the feelings, and most of all, the fear that it could all happen again is ALWAYS with you.  

Hearing the news this morning took me to a place I hadn’t visited in a while.  My heart broke when I heard; I was speechless, I was numb.  This woman is one of the people that would send me the kindest, most beautiful messages nearly every day after my stroke.  She is, without a doubt, the kindest soul I have ever met.  She has been through so much and still remains faithful, positive, and kind.  She is my hero.

I cannot take my mind off of her.  I am desperately worried about her well-being.  But, I have the curse of being able to visualize her there.  I have met the same neurosurgeons and had the scary conversations.  The same ICU nurses cared for me and I remember the exact layout of the ICU bay and individual rooms.  EVERY memory from the first week of my stroke came flooding back and it is extremely overwhelming.  Even after two years, those memories are as clear as if it happened yesterday. 

And those memories brought back to me the FEAR that it could all happen to me again.  That fear is always with me.  

My first thought every morning is, Is today the day?  Is today the day I have another stroke? I panic every time I get a headache or feel sluggish.  Am I experiencing symptoms?  Whenever I exercise, Listen to your body, plays on repeat in my mind.  

It can be exhausting.  I have to make a conscious CHOICE every day to live.  This is not to be confused with life as in living or dying.  I have to choose to enjoy life, be present, realize my blessings; I choose to live.  I have slowly learned to allow myself to listen and acknowledge my fears rather than let them rule me for an entire day for fear, worry, and self-pity only take away the precious energy I need to live.  I have also learned it’s all about perspective.  It was not fun to suffer the initial pain of a stroke, relearn how to walk, balance, and move my hand, retrain my eyes to blink and move, or be pregnant through the entire process.  But, it could have been much worse.  Through it all, I still had so much that so many others do not.  I was incredibly grateful for that.   

Yes, God has truly BLESSED me.  I have recovered well, Myah is healthy, and we are finally starting to settle back in to being us.  Not only that, I finally feel like myself.  My slight lack of functioning and strength in my left hand and leg are my new normal.  And I finally took the plunge and had eye muscle surgery in April.  I will never forget the pure joy and relief that I felt when I opened my eyes and only saw one image for the first time in 16 months.  My vision was restored, but the surgery also took away the one visual tell-tale that I had suffered a stroke.  I now can look in the mirror without seeing the constant reminder of my stroke and I am not self-conscious when I meet new people. That alone has been a game changer for me in the recent months.  

I have not recovered by myself, though.   My family, my friends, my co-workers, my fellow gym rats, MY ARMY, all have motivated me along the way.  The amount of love, friendship, and support that we have received from others over the last two years has truly changed our lives.  YOU all gave me the powerful gift of HOPE when I needed it the most.  Your kindness helped me to believe in myself.  Your compassion inspired me to do more.  Your generosity helps me give HOPE to others who need it.  

YOU have all helped me find my PURPOSE.  YOU have all helped me make my stroke matter.  I cannot adequately explain in words the enormity of that gift.  

Every 10 weeks I have the honor of organizing and implementing numerous fundraisers to help families suffering from medical emergencies and the Do Better. Be Better. Scholarship program.  Since January we have gifted 12 families $1000 each and given two $400 scholarships (they will be $800 this year!).  We are currently hoping to help 2-4 more families this session with our efforts.  And as of last Thursday, Do Better. Be Better. received $10,000 from the 100+ Men Who Care: Cedar Valley Chapter to be used to help others (blog post on that to follow!).  I CANNOT WAIT to finish the year helping so many families!   

Every fundraiser is a lot of work and tons of fun.  I leave with renewed inspiration and a full heart every time.  Even better, they remind me of how Do Better. Be Better. came to be. 

I still remember laying in my ICU bed on that first Friday night.  I was alone, as everyone wanted me to sleep.  How could I sleep?  The constant visits from the nurses and the numerous teams of doctors had completely overwhelmed me.  Plus, I was trying my best to be strong and present in all the conversations I had with all my family members.  And all the messages Patrick had read me throughout the day had left me paralyzed with gratitude.  I needed to say thank you; people needed to know how much I appreciated them and everything they were doing for us.  

So, I grabbed my iPad with my right hand.  I quickly realized I wasn’t going any further than that when I opened my eyes to type and saw more than one iPad.  I called for my brother to come in because I knew that he would be the most strong.  He sat next to me as I recited what I wanted him to write.  I will never forget the first paragraph.

I wanted to say thank you to all my family and friends. Your generosity and kindness has overwhelmed me. I have been praying that God saves a special place for all of you in His kingdom. You have motivated me to do better and be better. I am starting today. I love you all. I love you all from the bottom of my heart.

I still feel that exact same way.  I pray for you all daily.  Your generosity and kindness still motivate me every day to be a better version of myself.  I love you all; I love you for believing in me, for inspiring me, and for supporting Do Better. Be Better. and all that it involves.  You have given me the opportunity to make my stroke matter, not only for myself, but for my children.  You have helped me create something that I hope they will be proud of me for and that they can be an integral part of the rest of their lives.  I will do everything I can to repay your for that amazing gift.

So, I leave you with this.  A month ago, I was awarded the Rehabilitant of the Year award from Covenant Rehabilitation Center.  It was the first time that I had been back there since I finished outpatient therapy in January of 2014.  Wow, did the memories come flooding back!  It was so great to see all the therapists, nurses, and doctors.  It was wonderful to introduce them all to Myah, too.  As we were leaving, the front desk nurse pointed out a flower to me and explained to me that it was ours.  It took a second for me to remember that we had left a few of our flowers behind for the staff because we couldn’t fit them all in our car when we left.   This flower was just a little guy when we left it.  The doctors and nurses have cared for it for the last two years and now it looks like this.  I feel like it is the perfect symbol to represent both my journey the last two years and how amazing the staff is at Covenant Rehabilitation; they amount of love and care they give ANYTHING is truly remarkable.  



And finally, this is a video of Myah leaving Covenant Rehab that day.  She was a part of me the last time she walked out of those doors.  As I took it, I had a flashback of the day I left; walking out on my own, uncertain of what was going to happen next. 

  


To see her walk out of there that day took my breath away and showed me once again that

MIRACLES DO HAPPEN.

LIFE IS FULL OF CHOICES.

YOU CAN WRITE YOUR OWN STORY.  WRITE IT WITH PURPOSE.



Special thanks to all who are involved with making Do Better. Be Better. work behind the scenes:

My husband, Patrick Smith

Next Level Extreme Fitness: Ryan Downs, Creed Harkless, Matt Just, Luke Schuver, Danielle Carlson, Sarah Alborn, Allison Mitchell, Jordan Young, Nikki Carney, Natasha Hadacek, and Stacy Doughan, Mary Jo Vrba

Key West Tanning and Fitness Owners and Staff, especially Heidi Dohlman

Spread The Care non-profit and Lincoln Savings Bank, especially Alan Shakespeare 

Cedar Falls High School and Student Senate, especially Erin Gardner

Dunkerton High School and Leadership Group, especially Justin Urbanek

Dunkerton Class of 1999, especially Kelli Snyder

Sara Fitzgerald, Do Better. Be Better. graphic design liaison

Craft Cochran Screen Printing, especially Keith Sandvold 

100+ Men Who Care: Cedar Valley Chapter
  







Wednesday, October 7, 2015

Newspaper Articles

Rehabilitant of the Year Award

Do Better. Be Better. Color Dash

Our Family after the Rehibilitant of the Year awards ceremony.



Katie Jo Funk (my OT) with Myah and I.
 

The flower that we left the nurses and doctors after we left Covenant Rehabilitation.   Wow, has it grown!