Christian Joyce lived 28 years, 4 months, and 11 days. That’s not nearly long enough. He was five when we found out he’d been born with Duchenne Muscular Dystrophy, a genetic, incurable, progressive muscle wasting disease. It was unchartered territory for us. There was no family history of the disease and we didn’t know any other families touched by it.
Christian was a private person, so I won’t go into details about his condition other than to say doing routine tasks became progressively more difficult until one day the ability to do them was completely gone. These were losses he had to deal with his entire life. Sometimes he got angry, but most of the time, he channeled his abilities into a new direction. He read and researched things that interested him like music, sports, and video games… politics, animal welfare, and the environment. He could converse on almost any topic and if he didn’t know something, he always turned to a reliable information source online.
He was smart and funny. He could make me laugh or push my buttons like no other person. I spent most of my time with him. Sometimes we got on each other’s nerves, but most of the time we shared a wonderful friendship. I loved my son and he loved me. He also loved his brothers and his dad, and he loved his cats. He especially loved being an uncle. When my grandson comes to the house, Uncle Christian’s room was and still is his first stop. Christian spent hours searching online for the perfect gifts. He was generous with his time and resources and loved finding bargains.
Christian graduated high school with honors. Along the way he had three exceptional aids, Charlie Seymour, Sandy Fetterman and Nancy Rigano. Nancy was with him from 7th grade until he graduated. Our families became friends and Christian spent many happy hours playing video games with her son Pete. Nancy is the first person I called outside of our family members when Christian passed away. He had wonderful friends from as far back as 2nd grade when we moved to Pittsburgh. I have heard from so many of them and their parents and it is so comforting to know they remember Christian for his sense of humor and his kindness instead of his disease.
Graduation was bittersweet for Christian. He was proud of his accomplishments and eager for new challenges, but it meant he wouldn’t be eating lunch everyday with his friend Max and talking with his friends. He wouldn’t see Nancy or his favorite bus driver or his aid on the bus. He had the grades to go to almost any school, but because of his physical needs, he chose to start at the local community college, CCAC. Most of his friends were packing their bags to begin a new chapter of their lives, and that was hard for him, but he never resented it.
After he graduated from CCAC with honors, his physical condition prevented him from completing his bachelor’s degree. Christian stayed active. He played Fantasy Football and Fantasy Hockey with a group of his Physical therapists and staff members from David Physical Therapy. He listened to Giant Bomb podcasts – they review video games and talk about the video game industry and life in general. He listened to music and searched for new artists and bands instead of listening to whoever was popular. I was so excited when he agreed to start writing a column on music for This Awful Awesome Life. I hope you have enjoyed reading about and listening to the albums and artists he chose.
He followed sports and watched television series from around the world – sometimes in different languages with the help of subtitles. He tolerated HGTV because he knew I was planning some much-needed renovations to this house. When COVID19 hit, we had to delay those plans and though he won’t get to see them, Christian helped plan and select materials for what I will eventually do.
Some people might think he didn’t live a full life. I know he left us too soon. There were so many things he never got to experience, but Christian lived the life he was given on his own terms. He made his own decisions and always accepted the consequences of those decisions. Those are qualities most of us take a lifetime to learn.
I would give anything not to be writing this, but I want everyone to know about him. Hug your loved ones and never take a single day for granted.