Hi all!
Yes, I know this title is cliché and it was sort of stolen from a television show but it's relevant I promise! As a spoonie, I've come to the realization that chronic illnesses and their diagnoses are a lot like Pringles, "you can't have just one". When the diagnoses begin to pile up, it is quite easy to become overwhelmed and begin to lose hope. However, a diagnosis is the first step to treatment, and potentially getting better (at least partially). I will share with you all my recent experience with strange symptoms, a new diagnosis, and the effect it had my course of treatment for several conditions.
It started one day at school. I grabbed my "Heart of Darkness" novel from my bookbag as usual, but something was different. I scanned over the pages frantically, because I couldn't read one single word. I looked for Mrs. Murphey, my teacher, who came to my aid. With tears streaming down my cheeks, I explained to her that I couldn't see anything except light. She stayed with me and took me to the assistant principal's office. I immediately got an appointment with my optometrist, with the help of my vision teacher, for that afternoon. He was at a loss. He made a rush appointment with a retina specialist -- WORST experience ever. When I saw him the next day, he was beyond rude. He proceeded to tell me that I was "faking" and "seeking attention" just because I stated how helpful my school was being. He shouted for me to "hold my eyes still" which is impossible for me since I have nystagmus (involuntary movement of the eyes). I left the office broken-hearted.
Soon after, I made an appointment at Emory with their ophthalmology clinic. This was a much more pleasant experience, not still not very informative. I was told I'd have to "get used to" my episodes of blindness, which wasn't an option for me. I refused to think this was going to be a part of my life forever. Maybe that's selfish, or maybe that's what led me to my diagnosis.
I tried to cope as best as I could while waiting for my next appointment. I attended the region One-Act competition with no vision, which wouldn't have been possible without my amazing director, Mrs. R, as well as each of my castmates, who literally led me around everywhere that day. They all made my senior One-Act unforgettable, still I longed to have vision.
As my appointment approached, semester exams came and went. I had to take each one orally, which was a challenge (especially with Calculus)! However, Mrs. Crocker, now Mrs. Murray :), was exceptional! She traced each graph on my palm and slowly went over each problem with me. I somehow managed to pull a 101% on that exam. How? I'll never know. Ok, the moment you're all waiting for... my appointment: It was life-changing. I walked into the exam room, nervous as usual. The doctor, Dr. Morgan - movement specialist, walked in and got my history. He looked me over, turned to his students, and said "You know what's wrong? It's okay, you'll never guess. Septo-Optic Dysplasia". Septo-Optic Dysplasia. Once he explained it, everything began to make sense. The optic nerve underdevelopment, repetitive movements, obsessive compulsive behavior, and the weirdest piece of the puzzle - my missing septum pellucidium, something every other doctor has ignored. I cried tears of joy right in that exam room. He said "You don't want anything for those movements do you? Please don't say yes just because people say mean things to you, because if people make fun of you, screw them. You're you and you're perfect." He even got his student (who looked strangely similar to Peeta Mellark) to videotape me for a national conference because my condition is so rare. I am not scheduled with neurosurgery to begin my journey of treating several conditions that coincide with Septo-Optic Dysplasia.
I am finally getting treatment for the vision loss, as well as my constant migraines and craniocervical instability. Also, he is finally investigating the hydrocephalus and Chiari Malformation issue, which will hopefully set me up for a pain-free (sort-of) future. I am no longer able to participate in any sports but I can still be on stage. I have to constantly monitor my vision with bi-monthly appointments to my specialist, but I am so full of hope. Hope for a semi-normal college experience in spite of my other illnesses, hope for a future, and hope for getting better. I am eternally grateful that Dr. Morgan took the time to get to know my case and didn't make assumptions or pass me on to another doctor. Even with this diagnosis, I am me, and I am perfect. Well, not exactly...
Thanks for reading and remember --
FIGHT LIKE A SPOONIE!
xoxo,
Johna
