I am Miguel Young

My dad thought he had slipped a disc in his back and the hospitals in the Virgin Islands were not equipped. His company sent him for a complete evaluation to Mayo Clinic. He waited about a month for the results of all the tests he had taken. He received a phone call from the doctor – It was ALS and he was 42. He was at the top of his career as a Chemical Engineer working for a refinery in the Virgin Islands. I was 14, my other siblings were 16, 12 and 9. No one had heard of ALS but I remember that somber meeting in the living room like it was yesterday. I heard “terminal” and “3 years”. It was progressive and fast. Our family had to be split up because he wanted to return to Aruba and wanted myself and my older brother to remain in US school and live with guardian families. My younger siblings moved back with them. By this time, he was already in a wheelchair. It had been a year. His company flew him in a private jet for his dignity and for their gratitude for all the years of service. We visited summers and Christmas. I missed 3 months of school so I could help my mom and I wanted to just be with him. ALS is cruel. Back then, we communicated with him via eye movement. Looking up meant yes and blinking meant no. Reciting the alphabet until we got to the right letter of the first word was a common occurrence as was the suction machine we were each taught to use to clear his throat.

ALS is cruel. In moments when he couldn’t breathe, we had to jump and move his body to an upright position to catch air. Moving one leg at a time to help him walk to the wheelchair.

ALS is cruel. We had to move him regularly to minimize the bedsores. We told stories to keep him entertained. He wanted to know everything. The desperation in his eyes said so much. Feeding him baby food out of the jar was our dinners together.

ALS is cruel. At tender ages of 9 and 13, my younger siblings became caregivers on a regular basis. They had no childhood – it was school to home to relieve my mom with dad duty. They never complained. I longed to be there but he insisted I stay in school. I had to leave – I didn’t want to but I had no choice. I knew that would be the last time I would see him. I cried a lot. ALS is cruel.

On a somber night 2 months after I went back to school, I found my guardian dad sitting in the dark waiting for me to come home. I knew. He was gone. It was a little over 3 years. ALS is cruel. One of his last messages to me through my mother was “A good father never dies….he just fades away”. I loved that man with all my heart and I have missed him every day since the last time I was with him. He was that kind of dad. He made each of us feel special. My mother would not let me go to the funeral…she said I want you to remember him the way you left because it was so much worse after you left. For 5 years after his death, I could not bring myself to his resting place because that would make it real. It took courage to accept that ALS took my dad and left us to fend for ourselves. ALS is cruel. I cursed at the heavens because i prayed so hard and so long for a miracle. I felt that no one heard and I was so mad. How was it possible? Family split apart by this cruel disease. We wondered if it was genetic. All we ever were told is that “No one knows how ALS starts and there is no cure. It affects more men than women and around the age of 40”. What I have seen since is that there seems to be no rhyme or reason why anyone would receive an ALS diagnosis, that it is affecting more women now, that there are familial cases and that there are people being diagnosed at younger ages. ALS is cruel. But… ALS will not win because ALS patients are resilient and their demand is growing louder for those in power to authorize medicines that can help and reverse this awful disease. I am overjoyed that after so many prayers, there is hope and resolve.