by Mariah Wright
about the author:
Mariah Wright was born in 1975 and welcomed into a Duchenne family by adoption. Both her brothers had Duchenne Muscular Dystrophy and her mother passed away from heart conditions likely connected to Duchenne. Mariah is the youngest and sole surviving member of her nuclear family.
The Sole Survivor
I am the youngest and sole surviving member of my family of five.
I have two brothers, and they had Duchenne Muscular Dystrophy. Benjy, the eldest, was born in 1968, and Danny arrived 18 months later in 1970.
My mother wanted a daughter to complete the family, but my parents were concerned about having additional biological children. They made the decision to adopt, and I arrived in 1975 – a healthy, 10-day-old girl.
Unique Was My “Normal”
When I share stories about my childhood, I often hear how “cool” or “weird” it must’ve been to grow up the way I did; but I never thought of my life as being that different from anyone else.
It never dawned on me that it was unusual to drive power chairs as fast as possible down the hallway as part of my nighttime routine – a benefit of getting to plug the wheelchairs in to charge overnight.
I never gave much thought to the fact that other kids didn’t climb into the sling of a Hoyer lift, push the lever, and quickly lower themselves to the ground like some sort of an amusement ride. The day we traded our manual Hoyer in for the ceiling-mounted, electric version on a track system was a happy day for all of us. That thing could really fly if you knew how to do a trick with the remote control!
For well over a decade, I was their little sister who was also their hair stylist, PT/OT assistant, medical records clerk, itch-scratcher, lift operator, chef, caregiver, and snack sneaker extraordinaire. We were a happy family. Life always comes with challenges. Every family has their share of hard times; it just so happened that our challenges were a bit unique, and being unique was my “normal.”
My mom was a special education teacher and loved learning. She never stopped going to school, and she sparked a love of life-long learning in me, too. Her students were incredibly important to her, and sometimes I got to help her in the classroom. Some of my earliest acquaintances were her students.
I was particularly fond of a little girl about my age (8 at the time) who had Cerebral Palsy. She was non-verbal, and our mothers taught me how to communicate with her by reading her body language, asking her yes/no questions, and then watching to see if she’d blink once or twice.
Just being around my mom was a learning experience; she educated people without trying. Early in life my mom was a ballerina, tap dancer, and cheerleader. She and my dad grew up in the same small community and were high school sweethearts.
My dad was a salesman at Morton Buildings and was one of the corniest people I’ve ever known.
He loved practical jokes and teasing me, fishing, building things with his hands, picnics with Kentucky Fried Chicken, bonfires and roasting marshmallows for S’mores, peanut buster parfaits at Dairy Queen, and the salad bar at Pizza Hut. In his younger years he worked on his family’s farm.
He was incredibly dedicated to our family and found solace through church. As Christians, both my parents had a strong relationship with God and leaned on their faith daily.
Benjy, Danny and Me
The stars of our family were undoubtedly “The Boys.”
Benjy was extremely introverted and anxious, but also one of the funniest people I’ve ever met.
He introduced me to Monty Python and the Ministry of Silly Walks. I would’ve done (and probably did) anything to make him smile. (Tip: You’d be amazed how well one can perform a Silly Walk around the house in leg braces that weren’t made for them.)
His laugh was one of greatest sounds I’ve ever heard. It took a lot of effort for him physically, so a really good gut-laugh was rare. Each laugh was precious. He was very smart, and I’ve never met a more patient person. He loved reading, computer programming, video games, fish tanks, museums, watching movies, and was a “foodie” long before it was cool.
Danny never met a stranger and was outgoing to the point that we would get exhausted just watching him interact with people.
He was out and about socializing as much as possible and easily had more friends than the rest of us combined. He loved sports, drawing, going to the mall, and shopping for anything and everything that was name brand. He laughed frequently and was rarely without a smile on his face.
Benjy and Danny were both incredibly kind and compassionate, they loved life and found the good in everyone, and never complained. Sharing a diagnosis of DMD created a bond between the two that was palpable.
As a child I was shy, very silly, feared nothing, loved to read and cook, spent hours upon hours in the woods by our house, and was very involved in gymnastics. I also had a deep love for all living things – dogs, cats, chickens, raccoons, fish, rabbits, snakes, lizards, bugs… If it was alive, I loved it and wanted to take care of it.
Much to my mom’s horror, she discovered just how deep my love for living creatures went when we lived in Arizona.
I had a “secret” friend that my mom later told me she thought was an invisible friend, so they didn’t think much of it until one day I referred to her as “Charlotte.” One night my mom asked me where Charlotte lived, and I pointed to my window. There between the two panes of glass was Charlotte, my favorite Black Widow spider. She was beautiful! (And the next day she was gone.)
Some of My Favorite Years
Benjy and I connected through our love of museums and food. We loved going to Shedd Aquarium and the Museum of Science and Industry in Chicago, IL. He let me ride on the back of his power chair so my feet didn’t get tired as we explored. He also helped me learn how to cook by reading recipes to me and guiding me as I followed the steps.
Danny and I had a shared love of shopping. He could pick clothes out for me better than I ever could and was hands down the best shopping partner ever. He was, however, slightly less enthused about me riding on the back of his power chair – something about it not being “cool.” He still let me do it for a price though; he’d let me “fly” if I’d feed him some sweet snacks our parents would not have approved of. Naturally I obliged.
Some of my favorite years were when I was old enough to be with them by myself, and the three of us could hang out – just the three of us. We saw a lot of movies together. Helping take care of them was one of my greatest joys, and I was proud to be their sister.
We also had our fair share of fights. Fighting with siblings in power chairs was notably different than how my friends fought with their siblings.
My brothers liked to roll one of their wheels on top of my foot and just sit there for a while until I gave in. Or, if they were particularly angry, they came at me as fast as they could and rammed their footrest into my shin. Spitting was also a favorite (and my least preferred).
I often retaliated by giving them a good smack or by removing their hand from the controller, driving them over to a corner, and disengaging their chairs so they couldn’t move.
Stronger and Weaker
As time ticked by, I grew stronger; the boys grew weaker.
When I was in Jr. High, Benjy’s health deteriorated to the point he had to have a trach and a ventilator. Our lives completely changed after that. With his ventilator came home nursing, and our dining room table turned into the nurse’s station practically overnight.
It was a huge adjustment for all of us, and my reaction to it was less than stellar – though I suspect it was hardly a surprising reaction for an introvert in Jr. High. Our home was where I recharged and found peace, and in the blink of an eye that was gone. I begrudgingly adapted over time and grew very fond of a few of the nurses.
By this time I was developing a healthy love of all things healthcare related, so learning how to use medical abbreviations, document medications and nurses notes, and how to stock and store all the medical supplies was a lot of fun for me. Then they taught me how to suction, which meant the three of us could do things together again without a nurse in the immediate area.
Danny eventually ended up having a trach and vent, too, and the home nursing shifts became longer and more frequent. Benjy grew increasingly anxious and stayed home more and more. Danny, on the other hand, wasn’t about to let a little thing like a ventilator get in the way of his social life, so he spent more time out and about.
Numb, Invisible and an Only Child
DMD brought our family together and, in the end, it was the thing that tore us apart.
Benjy passed away in April 1992 at the age of 23.
I remembered being really worried about Danny because they shared the disease that took Benjy’s life. I’m sure it impacted him, but he just didn’t focus on things like that. I always envied that about him. For the first time in Danny’s life he wasn’t sharing his bedroom, and for the first time in years he’d go to bed without hearing Benjy’s ventilator or the sound of the hospital bed as the feet were adjusted up or down.
The visitation and funeral were grueling, but in true family fashion we used morbid humor to get through it.
My dad was very frugal about some of the strangest things, and the visitation was no different. He specifically requested the “cheapest casket” and when they reviewed the difference in “seal” options he turned to me and said, “you’ll be the last one standing. Think you’ll make it 100 years to see if we got our money’s worth?” Mom nearly fainted.
It took a while to recognize my dad wasn’t trying to be a morbid jerk; he was just trying to get through one of the worst experiences of his life the only way he knew how – humor and sarcasm. Nonetheless, if there was a dollar to be saved, Dad was going to find a way. I ended up doing Benjy’s hair to save $23.
The visitation was a constant stream of people for 4 hours. I was told repeatedly to “take it easy on your folks; they need you” and to “be there for Danny.” I couldn’t help but notice nobody told my parents or Danny that I would need them, too.
Benjy wasn’t my son, and I didn’t share the DMD bond that he had with Danny. But he was my brother, and I was utterly heartbroken. The song “Tears in Heaven” (Eric Clapton) had just come out, and of all the songs to hear on the radio between the funeral home and the cemetery wouldn’t you know it…
Over the next several years I graduated from high school and moved out of the house, and Danny was able to move out and live with a roommate. My parents got their dining room table back and became empty nesters.
Danny left us in November 1999 at the age of 29.
That visitation was longer and busier, and I wasn’t sure my mom was going to make it. By that time she had developed cardiac issues, which I now understand were likely connected in some way to DMD.
We were surrounded by Danny’s friends during the visitation and funeral, which I recall feeling both grateful for and bitter about. I was feeling very numb, invisible, and I didn’t want to be an only child.
With Danny gone, I lost the only other person who shared so many of my favorite childhood memories. I was beyond sad and incredibly angry.
Life’s Natural Course
Mom’s cardiac issues worsened, and she passed away in her sleep in 2010.
My dad was lost without her and went on quite a personal journey. Without Mom around he changed, and it felt like I lost both of them. We had to learn how to relate to one another differently, and it took a lot of time and effort for both of us.
A few years after Mom died, Dad developed leukemia. There were several month-long hospital stays for treatments and a lot of doctor’s appts. We had a different style of communicating, which more closely resembled two siblings fighting than a father and daughter conversation. Mom was our buffer; she was the glue that held everything together.
Unfortunately, the treatments stopped working after a couple of years. He had a complication and became unresponsive most of the time. Being the morbid, sarcastic duo that we were, he had already paid for his funeral and told me his wishes – “cremate me and put me in a cardboard box. Don’t get anything fancy.”
When the time came that it was clear he wouldn’t make it, I made the decision to put him in hospice. One of the last things he said to me during a rare moment of clarity was that he was ready to see Mom and the boys and that he loved me. I knew then I made the right decision, but it was by far one of the more difficult things I’ve ever done.
Several healthcare providers asked me during those last few weeks if I had someone they could call to sit with me, and that always baffled me.
I was fine. I was doing what I knew I needed to do, and I’d been preparing for it for most of my life. I really wouldn’t have known how to go through that experience with anyone else. My husband would’ve gladly been there every second of every day if I wanted him to be, but I needed to do it alone and he respected that.
I vividly recall where I was when I realized that if life took its natural course, I would be the last person in my family.
I was 10 years old, and I was alone in the woods behind our house. I spent a lot of time in the woods. I learned to be comfortable without my family in those woods. I learned how to be at peace in the solitude.
My Last Link
I wouldn’t trade my life for anything. My life’s experiences made me who I am.
Yes, there are downsides. I still spend a lot of time alone. I find it very difficult to be around a lot of people for long periods of time, but I’ve learned tricks to cope. I have a few close friends; for me, quality is much more important than quantity.
Recently though I realized there’s something that’s been missing since my dad passed away; the disease that shaped everything in my life is notably “gone.” I’m not around people who talk about “MDA” or “DMD.” We no longer have unplugged refrigerators filled with sterile medical supplies (they make great storage).
The most impactful experience in my life is something that nobody I spend time with can relate to. I lost my last link to that part of my life when my dad died.
Imagine my surprise one night when I ran across the Family, Friends and Duchenne page on social media. I read a few of the articles, and it was the most comforted I had been in a long time. There are friends that can relate; I just haven’t met them yet.
