I am Cathy Nally
living with ALS
While ALS will forever be a part of who I am, I refuse to let ALS define me.
My goal has always been to one day retire from the job I’ve loved & dedicate myself fully to charity work. Little did I know that day would come far sooner than expected and that the charity would end up being me.
I was raised in a paper mill town in Massachusetts and moved to Boston at the age of twenty. Within six months of my move, I met the man of my dreams whose first words to me were “I think I’m in love.” We were married the following year, blessed with two beautiful and loving kids, and settled into a wonderful life looking forward to our dreams of the future.
Unfortunately, life had different plans for us. In 2001, my athletic, compassionate, and devoted husband, John, died of a heart attack, leaving me to raise thirteen year old Danny and eleven year old Betsy on my own. With no life insurance on John, I traveled across New England every day as a manufacturer’s sales representative to support them financially, and I always found my way home to make sure I was there to support them emotionally as well.
As difficult as it was for me to raise them alone, and for them to have lost their dad at such a young age, we faced it with strength, dignity, and an unwavering positive spirit. Our bond is so strong because of what we have endured together.
Life took yet another turn when I noticed a slur in my speech following sinus surgery. Multiple specialists finally diagnosed it as muscle tension dysphonia, and I was referred to speech therapists for weekly appointments. Though I continued my therapy and prayed that I would improve over time, in my heart I strongly suspected it was more than a speech issue. After two years of searching for answers, I was finally diagnosed with bulbar ALS in October of 2020.
Nothing could have prepared me for ALS. I had always eaten healthy, worked out daily, and was an eternal optimist that filled our home with positivity and laughter, even if my kids would roll their eyes at the wheatgrass smoothie in the fridge, the offers to join a Zumba class, and the assurances that their braces didn’t really look that bad. I always believed that my purpose on Earth was to meet John and raise Danny and Betsy, and I did everything in my power to achieve that goal no matter what obstacle stood in my way.
That’s why the hardest part of my diagnosis was having to break the news to my children. Memories came flooding into my head of when I had to tell them their father had passed away, and it broke my heart that I would once again be delivering such devastating news. We were numb for weeks, but then, like everything else we had faced together in life, we rallied. It was not in any of our personalities to sit back and hope that my progression would be a slow one. I made the decision right then to accept this as a new purpose in life.
My previous knowledge of ALS was largely driven by Pete Frates and his inspiring Ice Bucket Challenge, and I wanted to find a way to leave my own mark in this fight. I became engaged in learning about legislation in my home state of Massachusetts, and was shocked by the lack of awareness that people had of ALS. Some people didn’t even realize that ALS and Lou Gehrig’s Disease were one and the same! Despite the efforts of Pete Frates and Lou Gehrig, the unfortunate reality was that in a region steeped with cutting edge research and biotech, there were still very few people talking about ALS and even fewer taking action to end it. I found my new passion and have never looked back.
My goal is to follow in their footsteps and those of other brave pALS (people with ALS) by expanding ALS awareness, working on bills that will impact generations of patients with this and other debilitating diseases, and putting a focus on Expanded Access Programs so that more patients will have the ability to participate in research when clinical trials are no longer an option to them.
While ALS will forever be a part of who I am, I refuse to let ALS define me. I will continue to keep my fighting and positive spirit strong as I look forward to those same dreams for the future I had years ago, whether it be dancing with my son on his wedding day or holding my daughter’s first child in my arms this February. In the end, I will embody the words of a poem that my husband always kept in his wallet and that has been a rallying cry for our family over the years: “Stick to the fight when you’re hardest hit; it’s when things seem worst that you mustn’t quit.”