Can a Disability Become a Friend? It Has for Me.
Seeing Duchenne as a constant companion and welcome addition to my life
As a person with Duchenne muscular dystrophy, I’ve always felt socially deprived and isolated. It’s been an extremely painful and lonely journey for me. Many of us with Duchenne also have undiagnosed anxiety and depressive disorders, adding layers of complexity to our already arduous paths.
Most adults with Duchenne, like myself, grow up as typically developing children due to our functioning neurotrophin (an important regulator of nerve cells) before birth. However, muscle decline starts to occur once we’re born because we lack dystrophin, which helps strengthen muscle fibers and protect them from injury. Slowly but surely, we lose our independent mobility and physical strength, followed by declining lung and heart health.
I had a happy, active childhood and a positive family environment. Not one of my developmental milestones was delayed. It was the best time of my life, and I loved spending quality time with my family and friends at group meets and vacations. But as time passed, I grew weaker and weaker on my feet and could no longer fit in seamlessly with my community. That was the beginning of my pain.
When I was 3, I had a severe separation anxiety episode akin to childhood trauma. I fell asleep on my parents’ bed with them by my side, only to wake up at midnight and find that they were no longer there! I freaked out, sobbed uncontrollably, and gingerly climbed down the three flights of steps leading to the ground-floor dining room before finding my brother’s nanny in his bedroom.
That was my earliest childhood memory, and the first time I felt alone. I didn’t realize how dangerous and unsafe it was, as I only wore socks. All I could think about was finding a family member to comfort and reassure me.
As a young child, I played with my neurotypical sister because my brother couldn’t interact very much with us due to his nonspeaking autism. One time, when I was 4, my parents had a pastor friend couple come over with their son and got my sister and me to play with them. However, I didn’t realize I was slowing down on my feet and couldn’t keep up with them, feeling left out as a consequence. That was the first time I realized I was different.
There were a couple of twin sisters who accepted me as part of their childhood lives, but I didn’t have any close friends until after my brother passed from heart failure, more than 18 years later.
Learning to cope without any meaningful friends was excruciating. I only had my nanny and mother for company. My favorite cousin from Australia would travel with his family to play video games and spend quality time with me. I cried buckets every time he had to return home.
Thus, as a young child, I had to adapt and redefine what friendship meant to me, often finding it in the unlikeliest of places. There was my bolster pillow and a couple of canaries we kept that got tragically eaten by a stray cat. But there’s been nothing quite like my disability, Duchenne.
Duchenne has been with me through thick and thin. We cannot be separated, literally. Even though I didn’t fully realize it as a child, it has been my constant buddy. However, although it’s always been with me, I haven’t always regarded it as such — not until I caught the 2018 film “Venom” and read a review that queered the relationship between the human host, Eddie Brock, and his alien symbiote, Venom, forming the Lethal Protector. That made me see Duchenne as an invisible sidekick who resides inside me and cannot exist outside my body.
Since then, my life has improved, and I feel much less alone and isolated with my newfound friend. I like to call my Duchenne “Duke” to differentiate it from the neurologist who discovered the condition and the impairments it inflicted upon me. Duke has a mind of his own and is constantly in my thoughts. He has been a welcome addition to my life. I am thankful to finally have a friend who’d never leave my side until death separates us.
So can a disability become a friend? A resounding yes!
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.