Hi reddit I'm glad to share my personal story. It is genuine.
"I’m one of those people who are very cautious about what they watch on TV or Cinema. No matter how realistic it might get, everything I watch on the screen seems fake to me. I never expected that I would one day tell you that a film, or rather a scene from a film, changed my life. Those who know me well also know that I suffer from a congenital disorder. I have been using a moving wheelchair since I was a kid and I never walked. I had no idea about the name of the disability that had been my companion for over two decades. I never felt that I had limited abilities, and the thought of sitting on a moving wheelchair rarely entered my mind. It was at the age of 23 when I was studying in Toulouse that I first discovered the name of my disability. Like any young man, my dream was to travel the world and discover what’s beyond the Atlantic. I wanted to study at the Georgia Institute of Technology in the United States and had many other dreams that I wanted to fulfill. My curiosity pushed me to dig deeper into my disability, so I contacted experts in genetics, neurosurgery, and respiratory diseases and conducted tons of tests to diagnose the disease. I will never forget the day the mask of my disability fell and revealed its identity. I didn’t expect the words of the doctor that day to be cold and difficult to grasp. All I was looking for was a name, but I got more than that. “You are suffering from Ullrich congenital muscular dystrophy”, the doctor said. “There are 50 documented cases in the whole world”, he added. “That’s nice. I’m a rare breed then. I’m unique, what a wonderful feeling!”, I replied. My life changed forever when the doctor gave me a smile that was a small gesture from him to ease the pain of what he was about to say: “Choe… I will tell you the truth, there is nothing to hide here. You are an adult and a responsible person, and I hope you will accept what I am about to say. Your breathing capacity is really bad, you only have 30% of normal human capacity. We need to take good care of what’s left of your muscular respiratory system. From now on, you must use a mechanical ventilation machine in order to relax your respiratory system at night and potentially live a normal life. You will have to use it every night for the rest of your life”. It was the first and only time my illness got the best of me and I felt as if someone was strangling me. I remembered a famous saying we use in Tunisia when we are surrounded by problems and calamities: “We thank God even for the breath”. The word “even” indicates the near impossibility of losing such grace. But here I was in the brink of death. Is there a more intuitive life function? Will I live enough to achieve everything I dreamed of? Do my dreams still have a meaning? What about the United States? What about my PhD? What about my lover in the southern shore of the Mediterranean? I had many questions that took me back to square one and made me think carefully about my next step. I was able to hide my anxiety and confusion from my surroundings. I carried on as if nothing had happened, I was merry as always, I participated in some association activities, and made sure to excel in my studies. I finally received the mechanical ventilation machine and tried using it at night but couldn’t. How can I live with this strange gadget hovering around, with its compressed air pushed into my lungs without any synchronization with my respiratory rythm, with its annoying noise and lights that keep me from sleeping? For a whole year, the machine stayed on my desk and I never used it, until I watched a movie that changed my life: The Theory of Everything. It’s a biography about the life of the famous theoretical physicist Stephen Hawking and the many important phases of his life, such as his relationship with his former wife and his suffering from motor neuron disease, which prevents him from moving, speaking, or swallowing food. The scene in which the doctor informed him about the nature of his disease and its development had a huge impact on me, since I lived the exact same thing. For the first time, I can say that a movie changed my life. I was surprised with Hawking’s reaction to what the doctor said. “How much time do I have left, Doctor?, asked Hawking. “Two years”, replied the doctor. “What about my brain? Will the disease affect my brain?” asked Hawking again, to which the doctor replied, “No”. Then Hawking said, “Well, then I have two years to prepare my doctoral thesis.” We all know that Hawking did not die after two years and contributed significantly to theoretical physics. In fact, he is still alive and married twice and has three children. I was amazed by his strength, then I wondered, “Your condition isn’t worse than Hawking’s! What’s this cowardliness? Enough of this attitude! Live your life to the fullest!” I decided to face my fears and use the ventilating machine. In order to convince myself to do so, I started seeing it as a technological gem that represents what humans could achieve using their knowledge instead of seeing it as a treatment method. Fluid mechanics, thermodynamics, complex control theories, ideal gas law…. I am now seeing the machine with the eye of the engineer who I am, the science buff. I did not just accept the machine, I fell in love with it…"
Submitted March 03, 2018 at 01:33AM by chou404 http://ift.tt/2HYSPTR
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