"Pride is a luxury of the strong." -- Patrick Rothfuss
I remember it like it was yesterday. It was just another exhausting day of medical school, full of painstaking lectures and copious note-taking, my brain overflowing with essential facts and figures. I was mentally drained and craving a welcome jolt of caffeine. But in walked a relatively young, well-dressed doctor, cool and confident as he strolled up to the front of the room. As he started talking, I started listening, attentively, for the first time in weeks. He told us about ALS, and I was never the same.
I remember the chills down my spine as he told us about how a diagnosis of ALS carries with it a life expectancy of two to five years. I remember flashing my friend a look of shock as he revealed that this brutal neurological disease could strike anyone of any age or background. Most of all, I remember the horrible nightmares that night, as I thought about the actual existence of a ruthless disease that systematically took away pieces of your body and soul, until you had nothing left. ALS progressively shuts down all of one's muscles, breathing, swallowing, and speaking, until one is locked inside oneself. It sounded like some sort of horror story. The medical world wouldn't allow such a devastating disease to exist, would it?
A year and one sick twist of fate later, I was lying in an ICU, with all of my muscles, breathing, swallowing, and speaking shut down, locked inside myself. I did not have ALS, but I had another awful neurological condition called Locked-in Syndrome (LIS). I was forced to hopelessly lie there and watch the world swiftly and unapologetically pass me by. When you desperately need machines and other people to care for you and keep you alive, there is absolutely no pride left in yourself, and that feeling is shattering. All of the intricate communication devices I attempted to use were from the ALS department of the hospital, but nothing seemed to work. My voice had to just stay trapped in my mind, screaming to get out. But eventually, my voice did have a chance to get out. All of my muscles, breathing, swallowing, and speaking were set free and able to recover. An ALS patient's body does not have that chance.
I am really touched and overwhelmed by how much money, support, and love people from Hollywood to Bollywood are showing towards ALS through the ever-famous (and infamous) ice bucket challenge. However, it is unsettling that most of these videos don't mention anything substantial about ALS, and some of them don't even acknowledge the disease at all. I don't mean to be a buzzkill, but I want everyone to remember that there is a terrifying, heartbreaking illness behind this passing, seemingly frivolous fad. I want people to know that learning about this scary disease is arguably as important as donating. I want people to realize how helplessly vulnerable we all are to the unforgiving wrath of Mother Nature. But most of all, I want people to acknowledge the fact that our health and our lives are so fleeting and fragile. I want people to understand the unfairness, cruelty, and devastation involved in losing complete control of one's body. I want people to appreciate the luxury of every second that they can breathe easy.
ALS has no cure. Please donate.