Growing up with Death sounds so weird, right? How can I possibly grow up with Death, something that is the total opposite? But that’s how I feel. Death has been in my life since I was in kindergarten. If you’re immersed in the world of people with physical disabilities, death might have been with you throughout your entire life.
From pre-K to fifth grade, I attended a school in Albertson, New York now named the Dr. Henry Viscardi School. I remember it was a school for kids with physical disabilities. It was a place that was no stranger to Death since many of the students had disabilities that guaranteed a shorter lifespan than the norm, but I never remember feeling anything but alive in that environment. We sang, we played, we drew, we colored, we laughed and we learned.
When I was in kindergarten, one of my best friends died. Her name was Connie. I don’t know how she died. I can’t remember much about that time but I remember I had lost a friend.
My mom said that the school asked her to tell me about Connie’s death so that I can help my friends when they found out. Supposedly, I told my kindergarten classmates that Connie was playing with the angels in Heaven. It was my first memory of how Death at an early age and living with a physical disability would go hand in hand.
Later on, Death took away my friend Dale. She was adorable with her freckles and jet black hair. She was so tiny. That’s saying a lot from one shorty about another shorty. Dale’s Osteogenesis Imperfecta was more severe than mine. I was still a little girl and I had no idea about different types of OI. Severe, less severe, mild, moderate…who knew about that stuff at the age of 10? I only knew that Dale had what I had and now she was dead because of it. Could Death be after me?
Fortunately, I didn’t give Death much thought because in our school we laughed and played and learned. We did everything that I thought happened in other schools where the kids weren’t in wheelchairs or crutches or canes. It turns out that the biggest difference between my school and my sister’s school was Death.
Death seemed to visit our school more than other schools. My younger sister who attended public schools never came home to tell us that one of her friends from school had died.
Yet, after losing Connie and Dale, Death took some more of my friends. If there was a tug of war at my school with Death, Death looked like it was winning. But if you saw us playing in the school’s accessible playground or drawing in art class, you’d never know.
At the end of fifth grade, my family and I moved to Miami, Florida. I attended a public school much more different than the one in New York. Although I had left the school, Death chose to stay there. Death took my friend John Shultz who also had my disability. I lost several friends with Muscular Dystrophy like Jimmy and Maria Compaccia, Nannette and Nicholas S. to Death. Even one of the sweetest guys ever, Adam Gerson left us to be with Death. Death had no boundaries. Death had no shame.
Don’t know if you have been keeping track but before the age of 18, I had lost at least eight friends with physical disabilities to Death. It was sad.
I think that is one of the reasons there are parents out there who don’t want their children with physical disabilities to socialize with other children who have physical disabilities. They don’t want them exposed to Death at such a young age. I can understand that. It’s not always easy to be cheery when those around you are dying.
Later on, I found out that many of the kids couldn’t deal with Death and having a physical disability. They turned to drugs and alcohol to numb the pain away. Depression was Death’s ugly brother and for some of my friends, he was there to stay.
Some of my friends with physical disabilities would drown in booze and drugs and say, “Tash, we got the short end of the stick in life. Fuck it!”
I could hear the pain in their voices. I could feel their sadness. It was like a wet heavy blanket over my shoulders. I felt helpless. What could I do to help my friends? How could I make them understand that Death was for everyone, sooner or later? But it seems Death likes to tap on the shoulders of people born with physical disabilities much earlier in the game than in others.
Death found my friends with Osteogenesis Imperfecta like Peter Webster who was a writer for Audacity Magazine and Becky Sisco who made me laugh at OIF Conferences. Death took my cousin Frankie who had Muscular Dystrophy and my friend, Richard de la Pena who had Spina Bifida.
There have been times when Death has knocked on my door. When I was about nine years old, I had an operation to place a rod in one of my limbs and I stopped breathing for awhile during the operation. That was Death! He was asking for a dance. But I had the strength to say, “NO! I will sit that dance out!”
In my 20s, Death asked me to dance again. The doctor said I almost went into respiratory arrest after battling a pneumonia. I knew it was serious when a priest asked me if I wanted to pray. I prayed and Death went away.
Every now and then, Death peeks in to see if I’m ready to dance my life away but this is one dance I’m going to do my best to avoid for at least a few more decades.
In the meantime, I keep the beautiful memories of my time with those who have gone on to be with Death.
Have you grown up with Death? What has been your experience?
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Email me Nathasha@audacitymagazine.com if you are interested in writing for Audacity Magazine.