As if middle school wasn’t awkward enough, I was starting to realize something about me was seriously different from my friends. When we would play "man hunt" or chase fireflies, I lagged behind, sat out, or went home teary-eyed and confused. I just couldn’t see. After a few doctors shuffled me around and ran tests, my parents were told that I had something we’d never heard of before—retinitis pigmentosa. The genetic disease, which is essentially a gradual dying of the rods in one’s eyes, was causing my night blindness, and would also slowly start robbing me of my day vision starting from the peripherals. They were also told there was nothing they could do at the time. I was 13. We didn’t talk about it much then; in retrospect, it was probably a combination of denial and desire for me to lead a normal teenage life.
When you’re living with something like an incurable illness or a disability, there’s a unique form of stress that arises when you realize a major part of who you are is out of your hands.
It wasn’t long after my diagnosis of RP that I was also diagnosed with anorexia, depression, and anxiety. I battled the eating disorder and took varying amounts of Prozac to numb myself for a decade, but the drugs just addressed the symptoms, not the root problem. I had developed an uncanny knack to seek out issues at every turn. If I could find something wrong with me, I did. If I could control something, I would. It was my favorite game of distraction; a subconscious effort of crafting troubles so that I didn’t have to think about what was really wrong with me—that I was slowly going blind and there was nothing I could do about it.
As human beings, we like to have control. But when you’re living with something like an incurable illness or a disability, there’s a unique form of stress that arises when you realize a major part of who you are is out of your hands. That, with no justification as to why, the deck of cards you’ve been dealt by the universe is vastly different. People generally like to take bad things and make them better. We like to mend things when they’re broken. But when a fundamental element of your existence is unfixable, an array of emotions bubble up to the surface. Sometimes they break through, or sometimes, I’ve found, they can lay dormant for a really long time, bubbling like hot lava underneath volcanic crust.
How do you deal with circumstances you can't control?
The way I see it, there are three ways to look at the hand you've been dealt. One way is to dissociate from them—that’s that boiling lava I’m talking about (Pro Tip: It never fails to burst through the surface later on). The second is to acknowledge them but with anger or sadness, living a life full of complaints, driven by worry, and fear. The last, and most difficult, is to acknowledge them with grace and gratitude for what good lies within.
I wouldn’t say I had a light bulb moment. Over time I began to recognize that I couldn’t control the things that were happening to me, but I could control how I responded to them. I came to accept that my condition wasn’t going anywhere. It wasn’t going to change—aside from getting worse—so I would have to change from within.
When I chose to start finding the good buried beneath the bad, I knew I had to figure out a way to see the beauty in life. This meant living in the moment, not in the fear of my future. For as long as I remembered, I’d been bad at being present. And it’s not surprising as to why. Living with RP, there is constant worry: When will I lose my vision entirely? Will I retain a small central pinhole of sight? What about all the places I need to see before then? Should I have children? Will I be able to see their faces if I do? Even day-to-day things like taking a walk, shaking someone’s hand, or going out to dinner can remind me of my imperfection and bring up the fear of how much worse things might get. As with any incurable or progressive condition, these thoughts can run rampant and take a paralyzing hold of our days and our lives.
Here's how everything changed when I chose to be present (again and again).
Knowing that being in the moment was really difficult for me, I decided to get more serious about my yoga practice. During my first teacher training, I learned more about meditation and began to practice mindfulness. Mindfulness is generally regarded as the act of being in the present moment, without judgment. When we are more mindful, we are more insightful. We become more anchored in the here and now.
After a while, senses other than my vision were enriched. I began to taste my food more. I started really listening and hearing what people were saying in deep conversations. I took note of the feeling of the sun on my skin or cold air on my nose. It was like I began to see life more clearly—not in a literal way, of course, because if anything my vision was becoming more cloudy and dark—but in a way that I could truly witness and connect with all of life's precious fleeting moments. Mindfulness has taught me to slow down the time between sensory inputs and reflect before I react. It has enabled me to notice when I am creating a problem to distract myself instead of addressing what’s really at the heart of the problem. Having lived for so long in a hyper-stressed state with mental and physical ailments feeding off one another, I can look back now and say that being more present has transformed my body, mind, and soul.
Today, I choose to see my deck of cards through a very different lens. What once looked like a dark curse has transformed into something light—a blessing, even. Without my visual disability, and the journey I embarked on because of it, I wouldn’t have ever been able to find the gratitude nested behind my eyes, seeking something so real and so helpful. I might not ever have become a yoga teacher, now professionally helping people who feel trapped or alone in their incurable conditions. And I certainly wouldn’t have created the online community I co-facilitate, a space for people with any kind of chronic illness or disability. Being an individual with an incurable illness is a fate that I’ve accepted—doing this led me to my purpose, and that’s something I would never change.
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