“I don’t know how you must be feeling right now. I mean, this has all kinds of implications on your future." Nick's stepfather Larry had paused his show, a half finished glass of wine perched in his hand, and was studying my face intently. I reflected for a moment.
“I don’t know,” I slowly replied. “I’ve always had a lot of hope, so in a way, nothing has changed.” My eyes were finally coming out of dilation. I gazed absentmindedly at the glass of Cab in my father-in-law's hand, trying to figure out what I was feeling. What came to mind were memories. The day someone first commented on my poor peripheral vision. The day my parents sold my car. How for the last six years the word "blind" had been adopted into my vocabulary as effortlessly as double tapping a sunset photo on Instagram.
My ophthalmologist is located on the seventh floor at the UCSF Hospital's retinal department; “Eyes” the sign reminds you as you exit the elevator and wait in line to speak to the receptionist. I’ve been coming here for six years now, and each time the breathtaking view of foggy San Francisco from the windows catches me off guard as I sit in the lobby filling out the same paperwork I filled out the year before.
For four years I have come to participate in a clinical trial funded by the Foundation Fighting Blindness to allow my doctor and other researchers to learn more about retinitis pigmentosa, hopefully leading to an eventual treatment or cure. Seeing as Nick and I are both from the Bay Area, it’s also a welcome excuse to spend time with friends and family and make a little vacation out of it, the timing of which tied in perfectly with Christmas this year.
Each visit has been the same. The same hours and hours of tests, many of them uncomfortable and tedious, the same monotonous words from the same monotonous technicians (“the more you blink the longer this will last”) and most importantly, the annual meeting with Dr. Duncan. Needless to say it’s never been an incredibly joyful visit to the seventh floor of UCSF.
Until last week.
I have been debating how to write this; how to tell people. How to communicate what it feels like to be told my vision hasn’t gotten worse in four years. How my test results were actually better last week than they had been in years, and how that's likely test fluctuation because it’s impossible for my eyes to even be an inkling better, but still… how unusual it is to see no progression in four years. How my doctor had the world’s biggest smile on her face when she broke the news. How I realized, with a painful jolt, how very rarely she’s able to deliver happy news to her patients. How I long for everyone in my position to hear what I heard.
I am visually impaired. I don’t drive anymore and haven’t in many years. I rely on others more than I’d like and boast countless scars running up and down my legs. These days when I tell people about my vision problems they give me a blank stare… not because it’s difficult to understand the implications of no peripheral vision but because being visually impaired doesn’t make sense. It conjures up woebegone images of white canes and dogs in the post office, and here I am posting snowboarding pictures on Instagram and performing in a local play and, well, living.
As they say, mind over matter.
Before the clinical trial began four years ago, my vision had been progressively getting worse. Last week Dr. Duncan said, “I don’t know what you’re doing but keep doing it... it’s working.” In hindsight, it was four years ago that I moved to Seattle and began exercising, eating healthy and making more health-conscious decisions in general. Additionally it’s when I decided to think about my life and future in a more positive light rather than the “I’m going blind I can’t do this” way of thinking I used to embrace. I’m not saying this is proof that a holistic healthy lifestyle and positive attitude have caused my vision to stop getting worse these past few years, but the coincidence seems too good to be true. Whether this truly is God supernaturally intervening or simply working through science, I'm going to do what my doctor told me to do: keep doing what I'm doing. That means a whole lotta prayer with extra doses of kale smoothies.
This Christmas was, in so many ways, one for the books. Snow has been dumping in Tahoe, which means it looks like we're finally getting the El Niño they've been predicting. Nick and I had an amazing time celebrating with our families, and even enjoyed a memorable trip to Crested Butte, Colorado! But through it all, I couldn't help but rejoice at my own personal Christmas miracle. And be thankful.
Happy Holidays to you and yours, and may you have a safe, healthy and happy New Year full of little miracles!
XO LLV
