The Timeline of a Rare Girl

Winner of the Doughty Essay Competition!

From then on, I was in and out of hospital, at one point for almost an entire year, much of that time in isolation, fighting against some unknown condition. When I finally got diagnosed, my situation began to stabilise, but my battle continued. By then, I was a young student at a french public school and instead of learning basic mathematics and grammar, I was regularly in hospital with pneumonia. I was constantly missing school for isolated stays in hospital, trying to stabilise enough so that I could rejoin my classmates for the week. I was absent for about half of the school year until around age 10, and felt alone for a really long time. It’s funny how spending so long in a secluded, isolated hospital room can make you feel like your life is a bubble.

I was a young, quirky and different student, so naturally I became a target. I remained close to my few good friends, and felt like I was fitting in, but I always felt as though I had to hide who I was. I felt that I already had so many different challenges and distinctions that I did not want to make my school life any harder than it already was. How is a six year old supposed to understand that it may just be kids being kids? How could I be expected to just “forgive them because they may have their own challenges”? I spent my childhood fighting for my life a lot of the time, and never truly got to experience being a little kid. I felt as though I had this voice inside my head, looming over me. It told me that it was not worth the effort, as I was going to be sick, or absent, or simply unlucky the next week. I had this dark cloud that kept masking the light that was my early years. How was I supposed to know that much of it would subside in the end?

You know that feeling when you meet someone who makes you see that your entire life could become something different in a single moment? I am not talking about anything relating to psychic images or magic predictions, but the idea that a new creation, person, or discovery could change everything? I have had three of these special instants in my life. The first was finally getting a diagnosis for my condition, which was, simply put, a thousand pound weight that had just been taken off of my family’s shoulders. The next is our relationship with the researchers at the National Institutes of Health. The team, based in Maryland, has a research project surrounding my disease, and has been our saviour since we began our annual visits almost seven years ago. I believe that I can credit them with changing my life by, among other things, suggesting a new medication. IVIG is an infusion that provides the antibodies and immune system supplements that my body does not naturally produce. I have been on this infusion monthly for several years now, and it is due to this that instead of spending months in hospital, I spend half days. Long hospitalizations are now uncommon for me, and I finally have a sense of security in the world. 

The last one of my major life shifts was the end of my swallowing condition. For a decade, whenever I drank thin liquids, such as anything you may be drinking as you read this essay, they went into my lungs instead of my stomach. I had to carry around premade bottles of thickened juices or applesauce to drink and felt, once again, as if I did not belong. I received thin liquids and medications through a G-tube, a tube surgically implanted into my stomach. Not being able to drink made me obviously different. So to me, being able to swallow was not only the end of this era, but also the biggest miracle of my life. After yet another swallow study, the technician told us the astounding news that there appeared to be no sign of aspiration, and that I could begin working towards drinking “thin liquids” or, as you would call them, liquids. My throat and tongue had built up strength, just like the rest of my body, and helped me weave my way around yet another obstacle. My life seemed to be changing. I became stable and started to live a normal life. I can assure you, if you ever see me on the streets after the pandemic passes, I will likely have a Starbucks beverage in hand. I have ten years to make up for, so I have to start now, right?  

I have been writing about a fairly bleak subject so far, so I think it may be time that we follow the strand of light that my life was beginning to have. When I realised that I was finally able to live a normal life, I started looking back on my life of challenges. Ironic, right? I knew that I was one of the lucky ones; one of the ones who became stable enough to engage with her friends, attend an amazing school, pursue her passions. I was lucky, and that is saying something. I was lucky not only due to the medical staff and medications that I have in my corner, but the rest of the community that proved so vital to my survival, and especially that of my family. From meal deliveries, get well videos, and offering to take me to appointments or watch me for the day, I have had an army by my side as I have fought all of my obstacles. I have always had these people, swords up, ready for whatever task was ahead. Whatever we needed, wanted or could not do, someone was there to help. All of these strong people have seen me at my worst, and they have remained an anchor of strength through my entire medical life. Even today: every appointment, surgery, hospitalization, these people have stood by us. This is the medication that I think has had the biggest impact on who I am today. 

Since my life-changing events and realisations, I have been able to participate in everything I would have liked to earlier. I don’t have enough time to sit by and not make up for those years in hospital. I have always worn a lens through which I would try to raise awareness about rare diseases and disabilities. I have organised fundraisers and awareness campaigns, as well as travelled internationally to speak at various events. From service dog awareness to what medications I use, I have discussed my life to a great extent, and have always viewed things differently than others. I have always been very outgoing, my friends may say that I am almost too extroverted, so why not use that personality for good?

I have experienced my share of traumas, but I have also been fortunate to have a community by my side. I have spent years with them on speed dial, as they awaited their role in the battle. I do not know what our world is going to become, but I do believe that in order to survive the COVID-19  crisis with as little pain as possible, we all must come together, as others have in my life. Though my game of life has had its rough patches, I believe that all the same rules are needed in this new global round. Through my eyes, even though a decade has passed, the expectations have not changed. People are expected to become active, caring members in their community, and it is about time that they recognise their responsibilities. So many people are taking the necessary steps towards flattening the curve today, and for all of those people, I applaud you. Despite their remarkable efforts, carelessness has remained a major protagonist to this pandemic. I have become so concerned that when I go outside for my one cautious walk of the day, soon to be none, I can’t help but ask myself one question. Why? Why have they not recognised the crisis in our world today? Have they not considered the people who are suffering or at risk? 

As a part of my condition, I have 12 diagnosed illnesses. I have spent too much of my time alone to be left in jeopardy again. I can’t afford to lose my health while my life has seemed to be just taking off. I can’t afford to have people ignoring the rules and playing as though no one will be affected. I need our entire community to pull together and fight. I am relying on you. I, along with so many of my vulnerable peers, can’t afford the consequences of this threat in our society. I can’t afford it, not today.