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The Challenges of Working With SMA

Posted on December 23, 2021
Article written by
Lisa Velez-Batista

With a newly earned degree in speech pathology, I began my career as a school-based speech therapist. I was a 32-year-old single mom living with spinal muscular atrophy (SMA) type 3. At the time, my greatest hurdles were climbing stairs and walking long distances. I was fortunate to work in a newly built, accessible building. Public transportation was out of the question, so I purchased a car and was able to get to and from work with ease.

I worked with children with disabilities and enjoyed helping them enhance their communication skills. Second to being a mom, it was the most fulfilling role of my life. In addition to working full time, I was also earning my master’s degree. I was so proud to be doing it all and not allowing SMA to stop me from living my dream.

Adapting to the Loss of Strength

My mobility began to wane ever so slightly with each passing year. At first, I was able to walk down the stairs, but eventually I needed to take the elevator between floors at work. Walking a block or two from my car became strenuous. I needed to park closer to work, so I applied for a special parking permit that allowed me to park directly in front of the building. Although the building had two elevators, I had to scurry around the building picking students up and returning them to their classrooms every 30 minutes. After witnessing me falling, my supervisor hired a school aide to escort my students to and from my therapy room.

Even with the extra accommodations, my legs would occasionally give out and leave me helpless on the floor. I was blessed to have wonderful coworkers who were there to lift me up when I needed help. As the years rolled on, I continued to lose strength. Twelve years into my career, I fell at work. The fall left me with a fractured tibia, torn meniscus, sprained ACL, and two hairline fractures on my knee.

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Difficult Decisions

Six months after surgery and physical therapy, I returned to work. The progression of SMA along with the loss of strength from the injuries made getting around very difficult. Using a cane was my new normal. I was in constant fear of falling or being knocked down and sustaining additional injuries. Finally, after 15 years of service, I decided to retire. It was a bittersweet moment. I was relieved to avoid travel and not have to worry about safety, but it saddened me to give up a career that I worked so hard to realize.

At first I felt a loss of identity. I would no longer be the speech therapist at my school. I wondered who would take my place.The absence of teaching in my life seemed like it would create a void that I didn’t think I could fill. Staying productive has always been my way of fighting SMA. I wondered if losing this battle meant that I would soon lose the war against SMA.

Starting a New Chapter

Socrates reputedly said, “To do is to be,” and Plato said, “To be is to do.”

I realized that it was “doing” that made me feel productive and alive. I wasn’t giving up or losing anything by retiring. I was ending one chapter and starting a new one. I was grateful to have had the opportunity to help children enhance their language skills. I decided to do something different and new, something that I had dreamed of doing when I was teaching. I wanted to write a children’s book.

A few years into my retirement, I became the author of a series of children’s books about idioms. My books were a way to continue helping children develop their language skills. I learned that although SMA may put boundaries on my mobility, it can never limit my goals.

Columnists on mySMAteam discuss SMA from a specific point of view. Columnists’ articles don’t reflect the opinions of mySMAteam staff, medical experts, partners, advertisers, or sponsors. Content on mySMAteam isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.

Lisa Velez-Batista is a member and ambassador on mySMAteam. Learn more about her here.

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