For the first 20 years of my life, I was oblivious to what SMA was. At a young age, I realized that I was different and wondered why my body failed me. I was in college earning an Associate’s degree with plans to go on to obtain my Bachelor’s when I got my diagnosis.
Adult with SMA
I was excited to finally learn what was causing me to fall frequently, have difficulty walking, and climbing stairs. When I arrived at the hospital to get the results of my muscle biopsy and EMG testing, I was greeted by a team of professionals with sullen faces. I was confused as to why their expressions didn’t correspond with the joyous event of solving a 20-year-old mystery. After the neurologist presented me with the name, spinal muscular atrophy, I smiled with ignorance and asked, “So how do we fix it?” He went on to explain that there was no treatment or cure. My smile faded and my expression mimicked theirs as my hopes for being normal were quashed.
The first thing I asked was, “So I’m always going to fall and have problems going up stairs?” One of the doctors chimed in with, “So your husband will buy you a ranch house.” I replied with, “How will I be able to get married and have kids?” She reassuringly stated, “Lots of weak people have children.” The genetic counselor explained that my parents were carriers and had both passed the gene on to me. I asked the doctor to write the name down. I stared at the letters written in his small, crooked handwriting as they informed me that it was progressive and that I would continue to get weaker. This knowledge caused me to frantically enter into a lifelong game of ‘beat the clock.’
After I graduated, I decided to put my education on hold to pursue motherhood. The clock was ticking and the threat of trading walking in heels for being pushed on wheels was constantly on my mind. Unlike Cinderella, who was warned that her carriage would turn into a pumpkin at the strike of twelve, I had no idea when my luck would run out.
I was married at 21, and had 2 healthy sons by 23. The marriage that I rushed into ended shortly after my second child was born. Caring for 2 children under the age of 2 was challenging. For 5 years, my sole existence was to care for my children. When they started school, the clock in my head had begun to tick a little louder. I was lucky that I hadn’t progressed much since my diagnosis, but was afraid that my fairy godmother would wave her wand and put me in a permanent seated position. My children watched me fall and eventually began picking me up. Being their only role model, I wanted them to look up to me and see strength. I had to return to school to earn my Bachelor’s degree before it was too late. If I was lucky, I might be able to work for a few years before the inevitable happened.
A year after earning my degree, I got a permanent position as a school-based speech therapist. I was thrilled to be working and supporting my family. A few months later, I met my current husband. Four years later, we were married and for the first time, I had a partner to rely on to make things easier. As I settled into married life, the clock began to tick again. It was time to acquire my Master’s degree. It was going to be difficult working full time and going to school in the evenings with 2 teenage boys, but the ticking pushed me forward.
I fell often at work but I always got up or was picked up by kind coworkers. Every day that I worked was a blessing and every year was a gift. I often wondered when my clock would strike 12 and end my career. After 14 years, a severe knee injury led to my retirement. I traded my heels in for a cane and eventually got a scooter for vacations and trips to the mall.
I decided to embrace the idea that I may need the scooter full time one day soon. I thought about all that I had accomplished and realized that I didn’t have to beat the clock anymore. I was ready to hear it toll 12 times. It was acceptance rather than defeat that I felt. I’ve since learned to live in the present and enjoy the abilities that I still have without listening to the constant ticking of a clock.
I grew up in Brooklyn. My first job was in an office in Manhattan. The trip to the train station meant that I had to walk one block and one long avenue to get to the train, then I had the arduous task of climbing 3 flights of stairs to get to the elevated platform.