Life Goes On (Part 1)

by John Buchbach

about the author:

John Buchbach is 45 years old Duchenne Muscular Dystrophy. Despite DMD, he has kept busy over the years with attending business school, working, owning his own business. Nowadays, both John and his wife stay busy – raising their young son together.

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Life Goes On: Part One
My Story and My Journey

I was born in Pasadena, California in 1977.

At this time in my life I was by all means a “normal” developing child but just born a couple weeks premature. As a child I was able to walk, run, play and pretty much all normal developmental things until around the age of 5-7yrs when I started to present with larger calves than normal (hypertrophy) and visible weakness/ struggling that caused difficulty when walking up stairs or ambulating long distances.

At this time we had just moved to Virginia and I was seen at Georgetown Medical for diagnostics and testing. After a couple months and some torturous tests, I was diagnosed with DMD.

The doctors had absolutely no bedside manner and I fully remember them informing my parents, in my presence, that I had DMD and “he wouldn’t live to be 13-15 yrs” because of known complications in children with DMD. There were no treatments at the time and really nothing that they could offer.

I was honestly still too young to comprehend that this doctor had just given me an expiration date, but my parents were understandably devastated. My father, who was a very old-school strong man, never showed me his emotions during this challenging time but I do remember him consoling my mother because the explanation was that she was the carrier and the reason for my diagnosis and prognosis.

A lot of families struggle with blame after a diagnosis but honestly now I look at my disability as a test and gift from God (I’ll explain more).

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A Teen

Growing up with DMD, I was able to ambulate functionally till I was about 11 years old and then struggled between 13-14 yrs suffering from constant falls, fatigue and eventually some introverted behaviors because I was afraid of falling.

This was when I received my first motorized wheelchair which not only changed my life tremendously for independent mobility but also opened my personality and expanded my world of possibilities. I was able to keep up with all my peers and stop worrying about falls and focus more on my friends and individualism.

My parents were always very supportive and helped to push me to remain as independent as possible. They never treated me differently from my siblings and expected me to accomplish typical childhood chores. They disciplined us equally and never let me use my disability as a reason that I couldn’t do something. I just had to adapt and make a way to get things done with my ever-changing physical abilities.

As a kid I felt this was unfair (of course) but now, looking back, I am blessed they raised me this way because it never enabled my disability to limit my life decisions, or to define who I was as an individual.

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After High School

After graduating High School, I received my business education from Mason University with the goal of one day owning my own business.

While working on my education, I had my first job working for a furniture company as a receptionist and then eventually in sales. I would drive my wheelchair through the store and would work with clientele just like all my co-workers.

This was yet another huge step in my personal growth because I learned sales. I learned how to accept criticism and know it wasn’t related to my disability and most importantly I learned how to “eat crow” and not talk back because at the end of the day the client is always right and this was a job.

At the same time as working and educating myself, I worked with a local state resource to obtain my driver’s license and eventually my first joystick driven accessible van so I could independently maneuver myself to and from my job, school, and life independently. The feeling of independently driving was one of the best experiences of my life. I now did not need to rely on public transportation or my parents for driving me around.

Don’t get me wrong, my first vehicle was by no means a brand-new fancy vehicle, but this 1987 Ford Cargo Van was my “Mercedes”, and I was proud of this old rusty van and all the places it took me. I paid $350 a month for five years for this van and every day I loved it more and more because it was mine and I worked for the independence it gave me.

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2002

Several years had passed and in 2002 my life had taken many turns.

I had graduated with my business degree; I had stopped selling furniture and was selling medical equipment for a small shop near my house. At this point, I had really found my calling and loved working with pediatrics as a medical sales representative. I loved meeting so many different people with so many different diagnoses and helping them to build and obtain the best wheelchairs, walkers, bath equipment to meet their specific needs and desires for continued independence.

This same year (2002) my father became sick and passed away. This was and still is one of the hardest things I could have ever imagined and the hardest thing I ever had to overcome. He was my superhero and had always been there to teach me, help me, and figure out ways to modify my life to overcome obstacles. He was a very talented engineer so he helped to provide me a mind set that if it doesn’t work or isn’t available then we will make it work.

Late 2002 I had decided that I now knew that selling medical equipment and helping families was my long-term career but if I was going to be able to help people the way I wanted to, I had no choice but to leave my current employer and open my own business. I had just lost my father and I was in a realistic mind set that if I don’t work hard now and make it possible to afford life as a disabled adult, I would end up in a nursing facility or something because I was losing strength, stamina, and physical movement.

I left my job and opened East Coast Rehab in late 2002. It took a lot of hard work, long days, and networking but I was able to build a successful business with a dedicated small staff helping both pediatrics and adults, but my primary focus was and would always be pediatrics. I operated my business for 15 years and then, with the right offer, I was able to sell the business to a much larger corporate company.

It was a hard transition for me because having been my own boss and having been able to do things “my way” for so long it was hard to hand over my business and see it dissolved into a big corporation. At this time, I didn’t know what was next for me because money wasn’t an issue, but I had lost my happiness, and my physical abilities were running me into the ground with overall fatigue and loss of independent movement.

Click here for Life Goes On (Part 2)