April 17, 2014

I was studying in my dorm room my sophomore year of college when my parents called me on their way back from a doctors appointment. My mom broke her foot almost a year before and was still having trouble with recovery, so a friend from Duke called in a favor to get her an appointment at the medical center. They were driving the four hours back to Maryland when they made the calls. First to my brother and then to me.

 

“Your mom has ALS,” my dad choked out. “Is that bad?” I asked in return. He started explaining this disease, one I had never heard of minutes before, a disease that would come to define my family and who I am today. I was 19 years old and had never lost anyone close to me. I didn’t know how to process the fact that my mom might not help me pick out my wedding dress or be a grandmother to my children. Or maybe even be there for my college graduation.  I held on to the chance that maybe she would “beat the odds” and surpass the average 2 – 5 years, but I couldn’t quiet the ticking clock in my head.

 

The months after her diagnosis were a blur, and I feared coming home every few months because I didn’t know how her disease had progressed. First there were the subtle speech slurs, then a cane, a walker, and a wheelchair. A former dancer, my mom became a prisoner to her own body. The hardest part for her and all of us was losing communication. She did not want to use any of the technologies available to help her speak, so we devised an alphabet chart where she would blink as we moved our fingers to each letter, spelling out what she needed.

 

As you can imagine, she only communicated the necessities but it was difficult to have any conversation. I moved home after I graduated from Boston College, but she knew my heart was always in Boston. When I decided to accept a job offer miles away from home so I could help take care of her, she spelled out “Boston?”

 

She passed away almost three years after her diagnosis, three days after my 22nd birthday that we “celebrated” in the hospice. I still have moments that I can’t believe she is gone, but I’m at peace knowing she is in a much better place now.

 

When I had to tell people that my mom had ALS, I could always judge by their reactions whether they knew anything about this disease. I certainly didn’t before it affected me, and I still find that people do not know what it is unless they have a personal connection. We need to change that. There is an extreme lack of awareness and funding to find a cure for ALS, and races like the Harpoon 5-Miler are a step in the right direction. I hope you’ll join me with my brother, sister-in-law, and friends this May to run for all those who can’t.

 

Thank you for listening to my story, and always remember that “There will come a day that you cannot do this. Today is not that day.”

Donate to Jana's fundraising page here.