Where I’m from, our medical literacy rates just shyly reach 1%. Our country doesn’t get involved with much R&D, especially in the medicine section. Many of the community still believe in pseudo-science just because it sounds ambiguously scientific.
I was 17 in 2015, my senior year of high school, and I was gearing up for a major exam at the end of the year that would dictate where and what I would study for my degree. I’ve always been very studious even from a young age. As it comes with the territory of being Asian, my parents had big expectations of me. So I worked hard, tirelessly, even. I had completely given up on sports and piano just so I could spend more time studying. I even brought along my thick, imposing textbooks with me whenever I went out.
Even prior to my diagnosis, I was already on medication. I was diagnosed with clinical depression and ADHD in 2013, when I was 15. I was already struggling as it is, but I really was not prepared for what was to come.
May 2015, I was seated at our dining table poring over a textbook, preparing for my midterms when the upper half of my right eye started to blur. I thought nothing of it, and took a nap, hoping it would go away when I woke up. Two hours later, I woke up and it was still there. I continued to ignore it.
Over the course of that week, it got worse. The most accurate way I could describe it was as if a curtain was slowly descending on my vision: a blurry, greyish blob of a curtain. I powered through some of my exams in school, because to me, at that point, doing well was more important.
By the end of the week, it had gotten so bad, half of the vision in my right eye was gone. The curtain had covered the top half, and was still slowly inching its way down. I started getting headaches because I was straining my other eye just to see. My mother sent me to the clinic, and they gave me some eyedrops because they had no idea what was going on. Two days after, I returned again, still not any better.
It was a whirlwind of a day. The doctor at the clinic seemed visibly panicked and quickly referred me to a hospital nearby that housed an eye clinic. He said, “It might be retinal detachment,” which such an urgency in his voice. My mother drove me straight to the hospital, while I silently crying in the passenger seat, deathly afraid of what’s to come.
The bright lights of the hospital were brutal, as my left eye was working hard to compensate for the lack of vision in the right. The ophthalmologist examined my eye and said it was all fine. How was it all fine if I couldn’t see? I though. He directed me to a neurologist instead.
When the blood test came back and the doctor told me I tested positive for the NMO-IgG and was experiencing optic neuritis, it felt like the air was knocked out of my lungs. I questioned him why, how could this have happened, and all he said was “we could run a hundred tests and we still wouldn’t know why.” The doctor also humourously asked me if I’ve ever lived overseas, because this disease was more common in the Western world, and in older women. I said no, pondering being Asian and 17.
I was admitted immediately. The nurses pumped my body with IV methylprednisolone for a week straight. I had to miss my midterms. And thus began my life with NMO.
It’s been 5 years and 7 months since then. I am still on immunosuppressants with some prednisolone as a safety measure. I was due to stop my medication as I have been stable for a while, but my doctor (one of the only four specialists in a country of thirty million) advised me not to.
I’ve had flare-ups and relapses since then, mostly triggered by stress. It’s hard being Asian and having this innate (indoctrinated?) sense of wanting to succeed, and having stress as a trigger for vision loss. Despite being diagnosed with a rare, autoimmune disease that sent me spiralling into a world of steroids, suppressants, extreme depression and even more steroids, I managed to graduate at the top of my senior class, with straight As. I didn’t get into my dream school, but I joined a British university that had a campus here in my country, and started my studies in Foundation in Science.
The worst relapse I had was in the tail-end of 2016. Now, remember how I mentioned stress was a trigger? Naturally, transitioning into university, living away from home and alone, I had a lot of stress. In that year alone I had two relapses, once in July and another in December. The one in December was the worst one yet, because suddenly it was both eyes that were rapidly losing vision.
I spent 3 weeks in the hospital: 1 in a private hospital closer to home, and 2 more in a government hospital in the heart of the capital. Following my doctor’s advice, I was to undergo plasma exchange to essentially “clean” my blood of the antibodies. Over the two weeks I was miserable. My hair was falling out, I was so weak. I had to get a catheter lodged into my neck which made eating and even talking impossible, I hadn’t had a proper shower for the two weeks on account of the catheter, and I vomited non-stop after treatment sessions. Not to mention the various medicines they were injecting straight into my bloodstream for pain, inflammation, nausea, etc. I was more or less on bedrest for the two weeks. Oh and yeah, plus the whole not being able to see.
Psychologically, mentally and emotionally, I was an absolute trainwreck. Aside from fear of losing my eyesight, I felt overwhelming guilt over how much my parents had to sacrifice. My mother stayed with me in the hospital to care for me, and my father was slowly reaching retirement age, meaning the insurance was gonna run out soon, and this was a lifelong condition. The medicine was and still is expensive, and I am ashamed to admit that there were times I entertained the thought of stopping my medication and simply letting the disease take me so that my parents wouldn’t be so burdened.
It was horrible experience. But thankfully, the treatment was a success. Since then, I’ve yet to have a relapse. Immediately after discharging, I was on 21 pills a day, including my ADHD and anti-depressants, and countless supplements to reduce the side effects of the steroids. Eventually, it tapered down to 14 pills, which is what I am taking currently.
My diagnosis was a turning point in my life. Up until then, I had no idea what I wanted to do with life, aside from a vague inclination towards the sciences. But going through the fear, the guilt, the fatigue, the depression, and five years later I’m still alive and kicking, and I refuse to let the disease win.
“I want to cure myself,” I realised, in a late night epiphany after taking my night meds. I hated this life of dependency on my medication, and I wanted to do something about it.
So I signed up for Pharmaceutical Sciences as my degree choice. Partly because I was always good at chemistry and biology (sort of trash at physics), but mostly as the drive, motivation and reminder for me to keep going and to kick this disease in the butt. I learned about the human body, diseases, organic chemistry, and I actually got some hands-on experience in the lab formulating medicine. I wanted to use this knowledge to get into R&D, so I would be able to research drug design and get involved in drug development.
And so I studied. So I could one day contribute to developing my own cure.
I just graduated this year. We have been in lockdown since March. I didn’t get a graduation ceremony, which was disappointing but understandable. Surprisingly, I was offered a full scholarship to continue to a postgraduate research degree.
While I didn’t expect to continue my studies, I believe this is an opportunity for me to develop my research skills to eventually reach my goal. My research now, to put it simply, is developing an oral dosage form using a novel method. I think it’s a good stepping stone to ultimately joining the ongoing efforts to better understand and ultimately cure NMO.
Over the years, it’s been a tough ride. Now I’ve only been living with NMO for 5 years, which is quite frankly nothing compared to what other patients have endured. Despite that, the diagnosis happened during my most formative and malleable years, basically stealing a big part of my youth, but has since shaped me into the young adult I am. Sometimes I feel I haven’t accomplished as much when looking at my peers, but then I think to myself, “I’m 22. It’s hard enough to survive as it is,” and I think about all the things I’ve gone through, and how I’m finally on the right track.
So, just you wait, NMO. I don’t know when, or how long it will take, but one day a cure will be discovered and you will be on your way out.
And I will be the one to kick you out.