I am Caroline Cooper
a family member of someone we've lost to ALS
I miss my dad every day. I thought I was going to have him forever. I wasn't prepared to see him go. I encourage you to tell your loved ones how special they are to you. To take pictures of everything, all the time, for they will one day be so important.
My father grew up in the Bronx, the eighth out of twelve children in an Irish family. He was known as “the best lefty to ever pick up a basketball” in the schoolyard. My father ran the NYC Marathon, was an avid cyclist, and when we put the pool in the ground, he swam laps because “you have to cross-train.” He mirrored out the walls in our basement and made a home gym equipped with all machines and weights you could think of. The man was RIPPED!
To see him start to develop a drop-foot over the years became concerning. He had a physically demanding career, a lineman for the Verizon phone company. Throughout his career he had seen chiropractors regularly. When the spasms came, and the muscle atrophy began to set in despite his rigorous workout regimen, we didn’t know what to think. My father eventually had a surgery on his neck to alleviate what doctors thought was pressure in his discs from his training. In 2014, tests confirmed the worst for my mother, sister and I- ALS, Lou Gehrig’s disease. We had no idea what this monster would do to our family, to our daily routine, to our thoughts of the future.
Although nothing about this disease is ever good, I was thankful it started in his lower body. My dad started with a brace and a cane, then when we would go to events and outings we had a pretty basic wheelchair, towards the last year we had a motorize wheelchair and eventually needed to purchase a handicap accessible van. ALS had come with a vengeance and disrupted our life. Favorite restaurants and friends’ homes became difficult to enter, our own home needed remodeling a bit to accommodate the chair. He lost the ability to walk, but as stated, since it began in his lower extremities he had his voice, he had the strength in his lungs. I would do my own research and Googling- more than I should have probably- and I began to have him leave voicemails, for I never knew when the day would come where he wouldn’t be able to speak.
My family was from a small community in Rockland, where the support of others was constant and strong. My father had many friends, to know him was to love him, so he still remained social and we had many visitors wanting to spend time with Danny. He even met Cardinal Dolan on a few occasions, and they chatted like old buddies each time.
My father was a spiritual man. He believed in his Catholic religion and would attend church regularly, in the later years of diagnosis with his aid by his side. I admire my father so much, for being faced with this disease, always praying for “strength for this day.” He listened to God’s Promise by Ellis Paul daily.
In 2014 the year of his diagnosis, I connected with The ALS Association and I went on to fundraise and run the NYC Marathon in honor of my father. I ran those twenty six miles for him. Having my dad see me do this was the proudest moment of my life. I will forever remember that smile on his face and his embrace as he hugged me on the sideline.
On December 21, 2016 I saw my father go to Heaven with his wife, two daughters, his best friend, and some siblings by his side. He was 55 years old. I swear my dad looked up at an angel. We had the most beautiful, most spiritual funeral services held on Christmas Eve at his church in the Bronx, St. Barnabus.
I miss my dad every day. I thought I was going to have him forever. I wasn’t prepared to see him go. I encourage you to tell your loved ones how special they are to you. To take pictures of everything, all the time, for they will one day be so important.
I pray for the future of this disease. I hope one day the gut-wrenching feeling of hearing a diagnosis can be followed with a doctor saying “Don’t worry, we have a treatment for this” Until then, I wish strength for this day to all who are suffering, of all ages, all creeds and races.