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Journeys

Touch it. Experience it. Own it.

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I started out on life’s journey too impatient to read the training manual. I completely disregarded the red bold type on the cover that cautioned new travelers that life’s journey is risky business. My life took on the character of a car racing down the freeway – a ride zooming full speed ahead with no thought of a pit stop until I reached the end of the road. Not a problem for me. I held on and enjoyed the ride - potholes, speed bumps and all.

 


 

In 2003, I celebrated my 60th birthday and was still having fun hurtling through life - until I woke one morning to find my thrill-filled ride had slammed head-on into a pile of debris. What happened? The last thing I remembered was falling asleep with the moon shining through my bedroom window. Now I found myself strapped to a gurney being rushed into a hospital trauma center. I heard an ominous word nobody wants to hear, and knew it was a stop sign – a forced pit stop – on my journey.

“Back up!” I cried. “Stroke isn’t on my itinerary!” I tried to speak out in protest; I grabbed a pencil and paper and scribbled my complaints. It seemed no one could understand what I said or read what I wrote. Before I could connect with someone, I lost consciousness.

Two weeks later I came to and learned I had suffered a debilitating stroke known as an AVM (arterio-venous-malformation). It robbed me of my reading, writing, and speaking abilities – a disability called aphasia. The disability made the alphabet and numbers become nothing more than meaningless scribbles, and the only word to survive the catastrophe was ‘chicken’. Chicken? Why chicken? The only thing you can do with that word is order dinner – a lot of good that did a vegetarian such as I!

My communicative faculties had vanished, but my thought process remained intact, allowing me to understand everything going on around me. But without the ability to express myself, I was locked into the solitary confinement of my own mind. It was terrifying. I was desperate for answers I knew I was surrounded by. But whether I needed to ask questions about my health or about the trauma I just endured, or find answers to something as simple as which bottle held the shampoo, the answer came in words and numbers I could not decode.

Some say eyes are the windows to the soul and I tried to reach out to the world through mine. I still understood what I saw of the world, but it no longer understood me.

Many of those around me, friends and medical practitioners alike, had trouble grasping the devastation of losing communication. A common approach to reach an aphasic is to shout. Some shouted into my ears demanding to know if anyone was home. I longed to shout back, “I’m NOT deaf, I just can’t speak!”, but the only reply I could form was ‘chicken’. Some stared into my eyes and saw nothing. Some people shook their heads sympathetically. Others stated cruelly that I was just “another 60- year-old woman who lost her mind”.

But I hadn’t lost my mind, just my ability to communicate. I could have chosen to believe the doomsayers who predicted I wouldn’t read or write again. Instead, I chose to believe in myself and decided to put Humpty-Dumpty back together again. The choice to do this- and the difficult work that lay ahead- was mine and mine alone.

Before I knew it, 2004 passed. Through hard work, my words had begun to return. This crack of light in my dark tunnel gave me my first sense of autonomy since the stroke. I used some of my first words to approve the brain surgery I needed, as well as to choose my surgeon. The surgery was a success, and it eliminated the risk of another bleed in my brain.

But it could not and did not repair the portion of my brain already damaged by the AVM. That was my job.

Although my speech continued to improve, my reading and writing abilities lagged far behind. Even some of my closest friends said they might never advance. “Be happy with what you’ve got. You’ve come as far as you can with your reading and writing.” I thumbed my nose at the negativity and announced I was going to be an author.

Another year passed and on February 15th, 2006, my first book, Let Me Die Laughing! Waking From The Nightmare of a Brain Explosion, was published.

With the first reached, I set my next goal: to prove I was capable of taking care of myself and, in doing so, find the last pieces to my puzzle of recovery. Two weeks later I set out from California on a major bicycle odyssey, determined to reclaim my sense of wholeness.

The journey took me a total of 12,000 miles through 27 states. I reached Omaha in mid-July and was invited to visit a rehabilitation center called Quality Living, Inc. Despite the fact that I was extremely tired and wanted to be left alone, I went. And the moment I walked through the doors of QLI, my irritability vanished and was replaced by inspiration. What I found there was a wonderful blending of reality, hope and optimism. Residents were, and still are, encouraged and assisted in reaching for their new, best selves - and their caregivers are made part of the program.

During my eight months on the road, I ran into many brain injury survivors gallantly striving to get their derailed lives back on track. It is they who inspired me to continue working on my reading and writing limitations and in my second book, 12,000 Miles for Hope’s Sake, I share some of their stories. My hope for this book is that it will bring encouragement to all those facing a life crisis, as well as laughter - for it is the greatest medicine of all.

I still have much to learn and many difficulties to overcome but I’m back on life’s highway, speeding down the road and laughing at the potholes and speed bumps, reminding myself humor keeps hope alive!

-end- metroMAGAZINE

 

 

 

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