A Guest Post By Juli Ochs

As an adopted kid, I couldn’t understand why physical endeavors were so difficult or why I had trouble sleeping at night because of the pain.  I was told it was growing pains and that it couldn’t be that bad, but honestly, it was.

While I didn’t let the pain or weakness stop me from participating in sports, cheerleading and eventually marching band, it was a struggle.  I valiantly tried for years to pass the Presidential Physical Fitness test but could never make the minimum marks.  In college in the 1980’s and early 1990’s, I struggled with taking notes in class and finishing tests, especially those requiring a composition book.  I literally couldn’t hold onto the pen or pencil long enough to finish.  I came up with a lot of compensating tasks, learned how to write with my left hand, begged/borrowed notes off others and the teacher, but I know for a fact that my grades were impacted because I couldn’t always finish exams.

My first love has always been horses and I finally got my first horse when I turned 18 and had one for the better part of 10 years afterwards, but when my cherished horse died suddenly, I lost my heart.  I still loved riding but for years, I couldn’t bear to be near horses.  On the bright side, during this time, I rode on the back of a motorcycle which was exhilarating but I didn’t think I’d have the strength to command a motorcycle…ever.

Life moved forward and not only did I find my natural family, I learned the reason I struggled with pain and dexterity, was Charcot Marie Tooth (CMT), a hereditary genetic neuromuscular disease; I was diagnosed with CMT 2A in 1996.  At first, I was depressed and physically gave up.  But that’s just not me, so I chose to live life to its fullest.  After many trials in the early 2000’s, I found a pain medication that worked for me and truly embraced life which had become full with 2 kids, 3 dogs and a husband to care for, so I had minimal time to pursue my own interests.

That said, I knew I had to stay physically active to stave off atrophy and weakness, so I learned yoga, Tae-Bo and went on a lot of walks in the woods.    As each of my kids were diagnosed with this genetic disease, I felt I had to show them we can not only survive but thrive, so while pain was and is my constant companion, I didn’t want pain to run my life, so I pressed on.

As days and weeks turned into years, I found myself divorced with a grown daughter and a teenage son.  I realized I still loved to ride…I would often ride horses, but after sitting on a motorcycle at a Harley Davidson dealership, I had started harboring a secret desire to ride/drive a motorcycle.

It took me 6 years and a new boyfriend to get up the nerve to sit for my permit and then take the basic rider course to get my endorsement.  Honestly, I wasn’t sure I could physically handle a motorcycle.  I mean, I can’t stand on my tippy toes and my foot slaps when I walk; how could I ever muster the leg power to do the things necessary to shift or brake?  But I decided it was now or never.