Accessibility & Awareness

This year has been an uphill battle, but I have always tried to find a way to catch up on and complete my online classes. School has always been so important to me, and I truly adore learning. Throughout all of my medical struggles this school year, I have always found comfort in my schooling. I have pushed through indescribable pain to complete just one school lesson, and it takes hours to complete what I could normally finish in fifteen minutes due to the distracting pain and blurry vision. The thought of not being able to conclude my courses or take AP exams is absolutely heartbreaking. Unfortunately, although my vision rarely works, I can’t sit up, and I have had two neurosurgeries this year, I have not been able to receive many accommodations for school. My mom informed my teachers of my medical situation at the beginning of the year and has since pleaded for extensions, yet no extensions have been allowed. Millie and I worked voraciously on my five online classes, but I could hardly look at a screen, so it was impossible. I felt so defeated. 

Mid-April my classes closed. With the great assistance of Millie, I was able to finish AP Environmental Science, AP Spanish Literature and Culture, and Research Methods. Unfortunately, although I had done most of the classes work, I was not able to completely finish or receive any credit for AP Calculus and AP US History. I was crushed! Throughout the year, I had maintained high A’s in each of these classes and studied voraciously for the AP exams. I even recorded myself reading the textbook so I could listen to my classes while in the hospital. Sadly, I will likely have to repeat these same courses next year in order to take the exams and receive credit. I remain incredibly frustrated at the lack of accommodations given to me during this time. NO ONE should be denied schooling because of a lack of accessibility.

In dealing with my complex medical issues, I have found a passion for telling my story and spreading awareness. There is a major lack of education among medical professionals and the general public regarding EDS as well as many chronic illnesses. In fairness, I had very little knowledge regarding chronic illnesses until I was diagnosed with one. I had never even heard of EDS or CCI. My personal number one goal is to educate the people around me so that fewer people will be accused of making up an illness for attention and those with EDS can reach a diagnosis faster.

It is the worst feeling in the world when you are getting sicker and sicker without an explanation. No one wants to be diagnosed with a chronic illness, but a diagnosis can bring an explanation and validation for persistent symptoms. I am a firm believer that everything does not happen for a reason. There is no “reason” that young children die of starvation or are killed by cancer. Terrible things happen in this world. I believe that in order to survive hardships one must find meaning and purpose out of tragedy, but there is no single reason behind tragedy. 

Operation Upright has helped me find meaning in my medical struggles. This fundraiser helps me feel like I can make a difference and help other people going through similar situations. If I could just help one person by raising money and writing all of this, that would be enough for me.

No one should have to endure doctors saying they are crazy or a hypochondriac simply because their case is complex. There are amazing physicians out there, but the sad truth is that many don’t like to take on complex cases. It is much easier to perform wellness checkups on healthy people than to follow a difficult case that involves many different specialties. Some of this is personal preference, but I fear much of it has to do with the existing payment mechanisms in US healthcare.