“Learning to Waltz Again” with Boston Mucker, Jennifer A.
Guest post written by Boston Mucker, Jennifer A. She is Boston Strong, an MS warrior, and an amazing mother and wife. She returned to team “Just Keep Smyelin” at the 2018 Boston MuckFest® MS.
2013 proved to be a year of heartache and triumph for the city of Boston, as it did for the Almodovar family, as well. My husband, Archie, and I welcomed our daughter into this beautiful city only a few days after the Red Sox won the World Championship at home. After she was born, the entire left side of my body was paralyzed. Growing up, I remember dancing on the toes of my father as he held my hands. It was a childhood memory I suddenly didn’t think I’d get to share with my own little girl. My pregnancy had its hiccups along the way. In the beginning of my second trimester, Archie and I stood at the finish line of the Boston Marathon, appreciating the blue sky and joyful exclamations as the first runners began passing by. My morning sickness drew us away from the crowds until we found a place to sit and rest. We were two blocks away when the bombs exploded and sought shelter in the W Hotel downtown for the next 9 hours.
As the pregnancy progressed, my legs experienced weakness and my back spasmed uncontrollably at times. That summer, I fell while stepping into the shower as my left leg gave out beneath me. A careless mistake, we assured ourselves. Months later, both of my legs collapsed as I walked hand in hand with Archie after celebrating our first wedding anniversary together. Surely, it could only be from the fatigue that comes with being eight months pregnant.
It was a regular Tuesday afternoon, like any other New Year’s Eve before it. A day full of anticipation for new beginnings and a sense of relief in kissing 2013 behind us, with one exception. We had my follow-up neurology appointment at Beth Israel Deaconess Medical Center to review my brain and spine MRI results. As a graduate student at Harvard University, my studies focused on neuroscience and neurodegenerative diseases. I knew all too well what it meant for my physical examination to have revealed bilateral clonus and hyperreflexia prior to having scans done. This appointment was what could be called, “the moment of truth,” in every MS patient’s story.
My husband looked to me to answer the millions of questions that come along with scan results depicting demyelinating plaque at C4 and T2 in my spine. I held my 6-week-old baby in a chest carrier when we received the diagnosis and I remember kissing the top of her head, trembling with fear of the battle awaiting us. The days following the diagnosis were lived in silence, with only the occasional crying of a tiny baby, a distraught husband, and a new mom who no longer felt she could be the hero her daughter needed.
In April of 2014, we made the decision to move our small family to my hometown of Jacksonville, FL, where Mayo Clinic’s sister campus was located. From wheelchairs to walkers, to IV Solumedrol treatments and spinal nerve root ablations, it would take three years and a village of family and friends to learn to walk again on my own. For three years, I felt as if I sat on the sidelines of my daughter’s life, watching everyone else able to help her. The only time I felt immersed in her little world came when she began learning the alphabet, her numbers, and reading as a toddler. I didn’t know how to be a mom in a wheelchair, but tutoring young children was a passion of mine that started as a high school student volunteering at Hope Haven, an after-school program for children with physical and developmental disabilities. Finally, I realized a way to connect with my daughter and help her grow the way any parent wants to contribute to their child’s life.
Multiple Sclerosis can not only rob the body of physical functions, but also significantly strain the mind of the patient. Within the first year on medications I dropped from 135 lbs. to 118 lbs. Being 5’10”, the weight loss quickly showed on my ribcage and emaciated facial appearance. In addition to navigating the labyrinth of PTSD symptoms from the Boston Marathon, I struggled with clinical depression, fatigue, muscle weakness, spasticity, and chronic pain. The hardest symptom to overcome, however, was in my own head. The majority of my self-identity up to that point revolved around my photographic memory. As a student, it was my single greatest point of pride. MS stripped me of that ability as I suffered a series of grand mal seizures in January of 2016. The seizures turned out to be a blessing in disguise though.
After beginning medications to control them, I regained a portion of my previous ability to form new memories, organize my thoughts, and even hold a fairly normal conversation again. It was the beginning of a wonderful series of hopeful events. Being able to organize my thoughts meant I could remember my physical therapy routines more easily, I followed a strict medication routine and diet, I slowly became stronger as an MS patient, a mother, and a partner to my husband. I began to resemble the woman who cheered on the runners at the Marathon, and blue skies were certainly above us once more.
In March of 2017, we moved back to Boston. We found the perfect home in the town of Stoneham, walking distance to St. Patrick Catholic Church and School, where our daughter begins Pre-K 4 in the Fall. As newcomers to the community, we were often asked why anyone would leave Florida to face the brutal winters of Boston? That, to us at least, remains a no-brainer.
Because we are Boston Strong.
Our daughter was born here. This is the city we call home. Boston gives us strength to keep fighting, not only for a cure for MS, but also this city reminds us of what it means to never give up.
And yes, my daughter laughs when I hold her hands as she stands on my feet to waltz in our kitchen. Her name is Aida Medina and she is the reason why I tirelessly fight to end this disease.