How my desk job gives me freedom with Pompe disease
I'm grateful that working with a disability is possible in my career
In elementary school, my teacher would often ask the class, “What do you want to be when you grow up?” Many kids responded that they hoped to be a doctor, lawyer, veterinarian, or firefighter. Me? I wanted to be a professional football player — specifically, the defensive end who rushes the edge and sacks the quarterback.
But unbeknownst to me as a child, I was born with two gene mutations that would cause me to develop late-onset Pompe disease. My diagnosis in 2018, at age 50, finally explained the symptoms I’d experienced all my life.
As I grew up, I discovered I wasn’t physically gifted. I couldn’t do a pullup, pushup, or situp. My upper body felt weak for my large size. I had no balance or coordination. My dreams of becoming an NFL player slipped away during my high school years.
Pursuing a different career path
I turned to community college to get things rolling on a different profession. But that didn’t pan out, as my grandfather passed away a month into classes. We were very close. After a few years, I found myself at a trade and technical school learning about electronics. I was on my way to a career in the office equipment industry.
I became a copier technician, driving from office to office, removing paper jams, fixing and setting up copiers. This job led to promotions to be a field supervisor and service manager. I even owned my own business for a few years.
However, the work was physically demanding. I spent a lot of time squatting on one knee or sitting on my tool case while fixing copiers. Sometimes I’d have to carry a 300-pound machine up a flight of stairs because I was in an older building that had no elevator. I’d even have to drive 25,000 miles a year around Washington, Idaho, Oregon, Montana, and California.
After 25 years in the industry, I felt that it was time for a change. My body was slowing down, and I needed to find a position that wasn’t as physically demanding. I was living in Spokane, Washington, at the time and hoped to move away from the snow, ice, and cold weather. Having grown up in Southern California, I could hear the ocean calling me back home.
Finding freedom in a cubicle
An opportunity arose in late 2016 to work for Toshiba America Business Solutions in the advanced technical support group as a senior technical support specialist. It was the desk job I’d wanted, especially as I neared my 50th birthday. I moved back home to Orange County, California, in September 2017 and brought my wife and mother-in-law along for the wild ride.
I was excited to be working in a cubicle with my desk, laptop, and three monitor screens, which enabled me to perform my job of collecting data and escalating issues to the engineers in Japan. Little did I know that this desk job would grant me the freedom I needed to continue working with a disability.
Just a year later, I started experiencing serious symptoms that started me on my medical journey. On Nov. 19, 2018, I was diagnosed with Pompe disease. I wondered if I’d still be able to work, and for how long.
I started enzyme replacement therapy infusions the following month and later began physical therapy. I’m still able to do my job day after day. During the pandemic, I worked remotely from home, but now I’m back in the office three days a week. And if I ever need to use a wheelchair full time, I know I’ll be able to wheel up to my desk and continue to perform my duties.
Thanks to my desk job, Pompe disease hasn’t limited me in my career. After 33 years in the office equipment industry, I’m still going strong.
I’ve faced many roadblocks on my journey — times I just wanted to pull over and stay at a rest stop forever. But I must keep driving. There are many more sights to see and goals to accomplish “On the Road to Pompe.”
Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Pompe disease.