I don't have any photos to share with you today, just my heart. My bio says this will be a place for stories, so here's a story.
It's been almost five years since I first discovered the awful truth behind the numerous bruises and "I didn't see them coming!" car accidents — I am, in fact, slowly going blind due to an extremely rare retinal disease called retinitis pigmentosa. There are literally no proven treatments available to stop or slow the cells from dying for me and the many others worldwide that are stricken with RP. Vaguely, hope beckons from the future, but for today, this is my new normal. I am an artist losing her vision — more than that, I am a human being losing her vision.
While not yet legally blind, I made the personal decision to stop sitting behind the driver's seat several years ago when I learned how little vision I had left. Probably the most frustrating thing about having RP is paying for the repercussions of what the disease may involve in the future... today. It's like, okay, give up driving but I can still see well enough to ride my bike? Go snowboarding? Go for a hike in the wilderness? Some freedoms are still available, no problem, while others are off limits? RP is a waiting game. Slowly, ever so slowly, year by year I lose a tiny bit more vision. It deteriorates so slowly that it's difficult to really measure the changes. A lot of doctors who diagnose patients with RP send them on their way without connecting again... you're going blind and there's no cure, have a nice life! Which is why I have renowned UCSF researcher and ophthalmologist Dr. Jacque Duncan on my side.
A year and a half ago, when I emailed Dr. Duncan to probe her for an interview for the book I was writing, she agreed and then asked if I would like to contribute to a four year research study she was conducting. Take part in finding a cure? Sign me up.
On Sunday I flew to the Bay Area to stay with my parents for a few days, and attend Year 2 of my ongoing clinical trial at UCSF. Dr. Duncan's research study is a fascinating one. She is recording short, high quality video snippets of specific cone photoreceptor cells in the retinas of 300 patients, over a time-stretch of four years. Through the dozens of recorded 15 second videos (in which the patient is required to sit extremely still with their head perfectly in place to the contraption), a map is built of the patient's cone photoreceptors. Each year the same cells are photographed, giving Dr. Duncan and her team a comparison chart of sorts, to learn more about the disease and the way it degenerates. So once a year I fly to San Francisco for 8 hours of testing, poking, prodding, photographing, measuring. It is not a fun day — some of the tests are quite miserable, as a matter of fact — but I am thankful to not only be a part of what could someday lead to a successful treatment or cure for RP, but to see with my own two eyes a team of people much smarter than me who are working tirelessly to make sure I see my grandchildren someday... and more importantly, that if I carry on this disease to them, they will be cured.
As I sat in her office Monday morning, the test about halfway done, I asked Dr. Duncan how the research was going. She sighed and quickly answered, "It really is far too early to tell, but we certainly have high hopes." A generic response, a kind response. I could tell her answer was rehearsed, that she's had far too many overly hopeful patients begging her for a cure, and suddenly, my heart broke a little for her — not the patient whose eyes are cheating them, failing them — but for the doctor, who feels like the medical community is cheating and failing the blind.
If we can send people to outer space, if we can invent the Internet and Facebook, we should be able to help blind people see.
My disease is so incredibly tiny. A tiny strand of mutated genes is communicating to my retinas they must die and stop working. And they're plugging away at it. Yesterday Dr. Duncan showed me my peripheral vision as it stands today compared to five years ago. In 2009 when I first visited her office, I was at around 30 degrees of vision in each eye (with a normally sighted person having a little under 180 degrees). Today, I am down to 25 degrees, making my vision deteriorating at approximately a minimal one degree per year... the math is pretty easy to do from here. "Legal blindness" won't come until 20 degrees. It was the first time I had some rough understanding of a timeline; a vague answer to the haunting "How much time do you have left?" question people invariably will ask. The effects of RP vary greatly from individual to individual; some people go blind early on in their disease, some much later in life, some none at all. Now I know where my eyes stand.
Sometimes I don't actually believe I am going blind. I stare at my eyeballs in the mirror, at my eyelashes and blood vessels and tear ducts and blue-green irises. Everything seems to be in working order. It is mind-blowing that something so tiny, deep in the far recesses of my eyeballs, could have wreaked so much havoc on my life. Years of questioning my identity and purpose, years of lying and telling everyone I was okay, years of avoiding God. RP has changed me beyond recognition; miraculously, for the better.
I am so much stronger now.
I recently stumbled across this verse in Exodus, a verse I've somehow never seen or paid attention to before. But now I think it's a lifer for me. I hope it encourages you as much as it did me: