Chapter 1. Diagnosis
How can we improve the patient experience and journey? Well before I answer that question, I wanted to share my experience and maybe some of this resonates with you. This is the breakdown of how this all started:
Geminid Meteor Shower in 1998
I was out with my friends in high school to view the meteor shower of the year. As a nerd, I had gotten special permission to lounge out on the rooftop of music class to view the meteor shower. We set ourselves up with EANABS and our favorite snacks and abruptly my friends turned, gasped, and marveled at the reverse, firework spectacle above us. It was gorgeous so they say as I doubted whether my friends were teasing me. I felt the explosion of confusion and pain flood inside me as the surrounding wonderment slowly drowned out. It was clear what was happening because I honestly did not know what did happen. But I walked home that night silent and alone among my good friends.
Since then, I nagged my optometrist every year about that night without the vernacular or comprehension of what happened. I did my best to explain my observations, “I just couldn’t see the stars.” And for 10 years, I was told that I had to adjust to the darkness a little longer. The advice made sense except after a long hour of sitting in the dark, my eyes never adjusted and my center of gravity felt disoriented instead. Or maybe it was my lenses was not corrected enough, so we again changed my prescription, and still 20/20 vision. In an era of AOL, I relied heavily on my optometrist (remember AIM?). So searching for “special eye doctors” and content was accessible as encyclopedia books. You heard me right, there was a time before Wikipedia because the internet was barely learning how to walk. While navigating the infant stages of Facebook and MySpace in college, I became the reverse vampire exploring campus life between the hours of operation 9-5 pm, and having an exclusive social life no later than dusk.
Even then I had tried to party which ended up being a flower wall because of exquisite dim lighting that was every bar and every party scene go to the mood setter. It was a buzzkill as I realize my preferred or vision-friendly settings are cafes and boba places.
These “life adjustments” were just a short preamble to the modifications I endured when I begin my journey into grad school.
Diagnosis
Orientation week at Stanford was a rush and full of excitement. I had just spent two weeks prior partying with my friends and family at the NIH and SoCal, so I was ready to be a serious graduate student and learn the ways of academia. After getting myself acquainted with the social structure at Rains, I had one more thing to check off my list which was setting myself up at the Vaden Health Center. It was painted with Stanford's iconic cardinal colors and it felt more like a tech office than a health center with the front desk dressed with educational pamphlets on self-care. I remember my first visit to my optometrist there and after so many years of saying the same thing, I figured I just note that I can’t see stars. I remember his uncanny response, “Oh, we need to refer you to an ophthalmologist.” I have never heard of ophthalmologists and I was both excited and scared. I was for the first time being referred to a doctor that knows something about me not seeing stars. I felt taken care of.
After several hours of retinal scans and visual field testing, this was the rub: I had retinitis pigmentosa and there was nothing I can do about it. In that hot moment, the adrenaline of joyful validation completely electrifies my muscles while instantly a dark shadow of depression sunk that validation into the deep abyss. There is not much that has been known about it. I asked do we know what genes are involved and can I get sequenced? My ophthalmologist replied, I think there are some guys in Oregon who are doing that but nothing available to patients right now. There are places like the Lighthouse that can set you up for a vision cane. You don’t need it now but the next step is for you to measure your progress on an annual basis. There is this one study that demonstrated that 10,000 IU of Vitamin A slows down the progression but it’s not statistically significant.
A bombardment of questions pierced through my interrogation: do I need a vision cane? I just drove over here and I have a car, should I stop thinking about driving? So 10,0000 IU of Vitamin A to slow down the progression of my disease? I will take what I can get. Anything to buy me some time to think about this. Am I going to be blind tomorrow?
Leaving the clinic more confused than validated, I began to reconsider my clear career path of becoming a professor. Would becoming a professor help me further the work that needed to be done. I couldn’t even get the care I needed and let alone find the support and communities. I did consider it. I went to all the talks and my first one was from Dr. Daniel Palankar he developed Argus, a cyborg CCD camera implant onto the optical nerve that replaces your complete loss of vision. There was also Dr. Stephen Hicks who was one of the first to implement google glasses technology and augmented and enhanced. It was the closest thing to helping those who are still suffering from loss of vision and still have some vision left and amplify their existing vision with the help of some augmented glasses.
Before I knew it, I had already shifted course. I began switching my life pursuit from a career mentality to developing a cure mentality. How do I begin to help myself and those who suffer from the same infliction? Where do I begin? Or do I just accept my fate and learn to adapt? How I answered these questions defines the life ahead and most importantly transforms it into the mission I’m working on today.
