This story is dedicated to my one and only brother, Robin. You always said I should write your story; some day.
My name is Robin and I’m an alcoholic. Let’s try again. My name is Robin and I am an addict. Let’s give it one more try. My name is Robin and I am an alcoholic and an addict! Fine, fine, let’s try one last time; the truth is that my name is Robin and I am disabled. Better yet, my name is Robin and I have Duchenne Muscular Dystrophy. Although, alcoholism and addiction seem to be less worse considering they are curable. My name is Robin and I have an incurable muscular disorder called, Duchenne Muscular Dystrophy and…I hate it. I hate it! I hate it! I-HATE-IT.
I hate it as little as most kids hate broccoli. I hate it as much as watching someone on their deathbed. Oh, wait…I am actually on my bed. I will skip the word “death,” here. I literally just sit or sleep in my bed all day, all night. Not depressing enough? If you want to compete with how miserable my life is, then imagine DMD, the abbreviation for my disease, like a house fire:
You and your family have just had the most delicious dish of lasagna for dinner. You go to bed, unaware that the oven, in which that delicious dish was baked, is still on. Imagine hearing the fire alarm in the middle of the night. You wake up to see that everything and everyone is surrounded by smoke. That smoke is slowly cooking you; it attacks your lungs before the fire can even attack your body. That is DMD. It is slowly cooking me alive until I become burnt.
I already feel burned out as it is. My parents, sister and I discovered my disease when they realized something was wrong with my legs. I used to walk normally before the age of four. That is like having lasagna for dinner.
At the age of four, I began waddling like a duck. It wasn’t long before I needed to support myself against walls in order to stand on my own two feet. That is like going to sleep at night, unaware that the oven is still on.
By the age of seven, I was mostly in a wheelchair. That is like waking up to a fire alarm.
By the age of ten, I was completely in a wheelchair. That is like seeing smoke surrounding my entire family and myself. Eventually, I couldn’t breathe completely on my own and needed an oxygen tank at home. That is like the smoke attacking my lungs. One of my lungs eventually collapsed and I now have a hole in my neck and a tracheotomy. I would say the fire is attacking my body, but I am not there…yet. I am at the point where there is a fire burning within me and it’s not the normal kind of fire; in other words, it’s not the fire of passion, although I am very passionate about a lot of things. That fire is not full of goals, ambitions… not even dreams. Rather, my heart is melting in this fire called, Rage! I am outraged, mad, angry! At DMD.
Sometimes, I have had enough. I scream. I cry. I talk about what I want to do without being able to do it. I want to throw things, but my hands are too limp to lift up. I want to run into something, but my legs are too stiff to stretch them. So…I scream. I cry. I talk about what I want to do without being able to do it. There is progress, though. I don’t ask the trillion-dollar question anymore: “Why did God do this to me?” I don’t even ask anymore, “Why…ME? And, why not…?” I have an older sister, by the way. I don’t fully comprehend what it must feel like to be a family member of someone like me. But, I suppose it’s like being able to walk, but not really being in the mood for it.
The most interesting part about my DMD is that I still manage to have a social life, if not on the Internet, then in-person. Nowadays, I have relatives and family friends who visit me quite often. Knowing I am a “food connoisseur,” they will bring me just that…food. I even get to meet new people. I ask each one a lot of questions, perhaps because it is easier asking questions than it is answering them. It would be as dry as a desert if someone were to ask me questions like, “Do you go to college? Do you work? Is there someone special in your life?” The answer would be “No,” “No” and “No.” As I interview new guests, I memorize their faces and our conversations, together. That way, when we meet again, I can ask them follow-up questions, hoping they might ask me something I can answer.
If someone were to ask me about my hobbies, the sand would suddenly fill up with water and maybe, even…fish. For example, “I love to sing!” I’d say, followed by, “I sang a Justin Timberlake song for my high school talent show. My sister helped me rehearse it at home.” She also taught me how to read. She also left me…not on purpose. She got married. On her wedding day, I wanted to cry. She cried and cried and cried. Meanwhile, I swallowed balls of tears down my esophagus. I wanted to be brave for her just as she had always been for me.
I could still get married and have children. However, my parents feed me, shower me, take me to the bathroom, change my tracheotomy, take me to my doctor’s appointments, and take me to my therapy sessions. I even have a night nurse. Sometimes, she comes during the day to take me out to the movies or to the mall. I would never put what my parents are going through, on someone else. The closest thing I have to experiencing love is my family. I accept it like a gift wrapped up into a cylinder box and upon opening it, I would find a nest…my nest.
Nest. That reminds me of my name and my name reminds me of a bird. The problem is that I can’t fly like robins do. Although my wings are clipped now, they weren’t always. I can tell you that I have met Beauty and the Beast, backstage, after their performance in Disney World. I’ve even ridden the rickshaws (bicycle carriages) of Bangladesh. Not to mention, I have seen how tall the Eiffel Tower and the London Eye are. I have ridden the boat toward the Niagara Falls and wandered the markets of Montreal. Washington D.C. has the best museums! Furthermore, the most meaningful experience of my life was circling the Kaba during the Muslim holy pilgrimage in Mecca, Saudi Arabia; although my father had to carry me most of the journey.
Evidently, I have flown, but it has been many, many years since then. Regardless, my parents knew that it wouldn’t be long before we couldn’t fly anymore so we lived in the “now,” then. I say, “we” because where I am, they are. Even my sister and nieces visit me all the way from Sweden and stay for at least two months at a time. I have never seen Sweden, but that is just one of the many reasons why my chest is fiery red, like a robin.
As I said earlier, my name is Robin and I have an incurable muscular disorder called, Duchenne Muscular Dystrophy. Despite DMD being its initials, I would have called it something like, “Dumb and Mad Dumber,” “Dark Morose Depressing,” or better, yet, “Disastrous Monstrosity of a Disorder.” And…I hate it. I hate it! I hate it! I-HATE-IT.
Let’s try this again. My name is Robin and I have a loving family, relatives and friends. My name is Robin and I have a collection of toy model cars displayed in my bedroom. My name is Robin and I love good food with good company. That puts me in a good mood, which gets me singing! Even more, watching my nieces play and grow is the highlight of my life. I love it. I love it! I love it! I-LOVE-IT.
Rumki Chowdhury (Winner of the June 2020 Writing Contest)
Country: United States of America/Sweden
June 2020 Writing Contest