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Blake E.

March 1, 2015

I am ... A Survivor

The beach sand was soft and beautiful, the ocean laps against my feet, the colors of the sky are vibrant and stunning, and I am at peace and alone on the beach. Alone except for a man who is silently behind me. I feel calm and happy and then suddenly the man claps his hands and says, “Time to wake up!”

I awake groggy and confused, I’m late to pick up my best friend for school but I can’t get out of bed. I moan the word “mom” and suddenly she is by my side. She seems happy to hear me and then there is a flurry of activity in my room. I don’t understand what is happening, why is everyone so happy to see me, why do I hurt so much and why am I in the hospital? The next few days brought even more confusion, I struggled to make my right side move, I struggled to say the words that were in my head,  why are there so many tubes flowing from my body and what are all these machines? The days pass by and there is a routine of doctors coming into my room asking me to lift my left leg, left arm, right leg and right arm. My friends and coaches come to visit me and all I can manage to say is “yes” and “no”.  I recognize people, but I don’t always know their names. A few days later, the nurses came in and said it was time to get out of bed and go for a walk. As I walked around the hospital floor, the doctors and nurses cheered me on and gave me high fives! What was the big deal, I was just walking? My next big moment came when the EMT’s arrived to drive me to Nebraska for rehabilitation. Seriously, what is happening?

I arrived in a new place and my grandma was there to greet me. She seemed so excited to see me and said mom would be here shortly. The weekend was foggy, meeting new people, completing a variety of tests and why do I have to wear this stupid helmet? Monday arrived and the nurse came in to remove the staples from my head, my mom held my hand and when it was over, she said, “Blake, I need to explain what has happened to you.” The next words were a blur, I’m sixteen, and sixteen year old girls do not have a stroke. How did this happen?

On Friday, November 1, 2013, I awoke with ear pain but went to school. Shortly after first period started, I told my teacher I didn’t feel well and needed to see the nurse. The next thing I knew, my friend woke me up and said it was lunch time. I called my mom and she met me at the pediatrician’s office. The doctor said it was probably the beginning of a cold and with a few medications, I would be okay. I went back to school, cheered at the football game and made it back home. My head was pounding and I just wanted my bed. I remembering getting sick a few times in the middle of the night and waking up with my head still hurting. I laid in bed most of the day but by 4pm felt good enough to get up and get ready for my competitive cheer teams “parent show-off”. With competition season just three weeks away, we were performing our routines for family and friends. I didn’t feel great and told my coach but as we all know, if one person can’t perform, the whole team can’t perform. I went on and we did it, the routine looked great, we were almost ready for our first competition. When it was over, I found my mom and she knew it was time to go back home.

Several hours later, the pain was excruciating, I was crying hysterically and I wanted to be sick. My mom was lying next to me trying to console and comfort me. My step-dad came in and said it was time to go to the hospital. I made it downstairs and wanted to be sick again, my step-dad was next to me telling me to get on my knees but I couldn’t understand what my knees were and how to bend down. I remember walking into the emergency room and being led to a hospital bed. The nurse gave me some medicine and that is the last I remember until waking up in my hospital room.

My mom reviewed the days leading up to my stroke and explained I had been rushed to the hospital that Saturday night and Sunday morning, an angiogram and MRI confirmed that I had a hemorrhagic and ischemic stroke. The stroke team determined cerebral venous sinus thrombosis (CVST), a rare condition most often seen in young adults and requires a high degree of expertise to diagnose and treat caused my stroke.  On Monday, November 4th the doctors performed an emergency decompressive craniotomy to remove part of my skull allowing my brain to continue to swell and slowing the degree of damage. The doctors kept me medically sedated for several days, only pausing the medication long enough for them to ask me to raise my left leg, my left arm, my right leg and right arm. It had been a frightening week for my family and friends. As my mom continued to share the details of the last two weeks, I sat in disbelief. I was scared, confused, and sad. I made her tell me the story over and over again.

I spent the next three weeks at the Madonna Rehabilitation Hospital in Lincoln, Nebraska. I had physical, occupational and speech therapy twice a day. Physically, I could feel my body getting stronger but mentally I was so sad. I had been smart, now I wasn’t. Why couldn’t I read simple words, why couldn’t I say simple things, and why am I so far away from home? My team of therapist were great, they believed in me and encouraged me every step of the way. Once I could finally grasp what had happened and that I was in control of my recovery, I found the strength to do what was necessary to begin my journey back. We had a target date, I wanted to be released from Madonna on December 6th so I could attend competition for both my high school and competitive cheer teams on December 7th.

Mission accomplished! My mom and I left Madonna on Friday morning and I surprised my high school squad during their practice. It was one of the best moments I could remember. I missed my friends so much and I missed being with them each day getting ready for competition. Saturday morning, my family and I surprised my KGDC competitive team and arrived in time for me to walk out on the mat for their performance. It was a great moment, walking hand-in-hand with my team who loved and supported me through the last five weeks. Later that afternoon, I walked out on the mat with high school squad as they competed and took top honors.

Soon winter break was over, I had surgery to replace the piece of skull that had been removed, and plans had been made for me to return to school. I was apprehensive, nervous and excited about seeing my classmates and teachers. What would they think of me? Will they be afraid of me, will they still be my friends? I wasn’t excited about the classes I was going to have to take, I just wanted to be normal. I wanted to be who I was, I wanted my old life back. Once again, I had an incredible group of people to support me through the next semester. The best way I can explain it, I started that semester at a 4th grade reading level and with a lot of hard work and determination, I was back on grade level by May.

Today, I am just a few months away from graduation. I have been accepted to Pittsburg State University where I plan to earn a nursing degree and someday be a Neuro ICU nurse. I have become an advocate for stroke awareness. I have partnered with the Kansas Medical Center and my neuro surgeon to speak with people about my experience, I have reached out to other stroke survivors and organized a Pediatric Stroke Awareness night at my high school. I have met other stroke survivors who inspire me and one day, I hope to be very involved in the education of stroke awareness, its effects on both the survivor and their families and most importantly stroke recovery.

To learn more about my stroke and continuing recovery, follow my blog at www.BEStrong1997.com

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