At nineteen, I was blindsided by the news that I had a degenerative eye disease called retinitis pigmentosa that would erase my vision. First, the disease would eradicate my nighttime and peripheral vision, the doctor explained, and eventually, it would destroy my central vision, too. The process would be gradual, he assured me, and though it was impossible to guess how long it would take, I’d probably be blind, to some extent, in my thirties.
I spent a decade and a half running away from this bad news. In my early twenties, I thought I’d outsmart eventual blindness by cramming in tons of sights beforehand and I lived with reckless abandon, seizing every day. By my late twenties, my response evolved into a more straightforward denial; I had one child, then another, and the thought of not being able to see them filled me with such sadness, I decided to just banish the thought from my mind and pretend the whole thing wasn’t happening. I hid my growing vision loss from others, and from myself.
But as the years passed, my tunnel vision grew more constricted and then, thanks to cataracts, blurred. I lost depth perception and grew color-blind. With each year, the prospect of blindness crept closer, and keeping my back turned to it didn’t make it less scary. In fact, running from my disease made it even more terrifying, and afforded it more power over me, too. I was mother to two children but acting a lot like a child myself, hiding from a Bogeyman.
Ultimately, it was the thought of my kids that prompted me to stop running and confront my vision loss. I wanted to teach them, by example, how to handle the curveballs life throws at you; I wanted to impart strength to them, and resilience. So I signed up to receive training from organizations like Visions, the Lighthouse and the New York State Commission for the Blind. I learned how to use a mobility cane, and adaptive technology, and I joined a support group. Still, I received most of this training in private, and I continued to keep my vision loss concealed.
Until I wrote a memoir. It was the book I’d always hoped to write, ever since I was diagnosed at nineteen, but until I was thirty-five, I didn’t have the emotional capacity to tackle that project. I knew publishing a book which divulged every detail of my experience with vision loss would make it impossible for me to keep it a secret, and in theory, I knew this was a wonderful thing. But in practice, the process of baring myself was difficult.
Friends and acquaintances would ask what my book was about and for a long time, I was evasive, not wanting to let go of the secret I’d clutched so tightly. I found that I had to force myself to lean in -- not just once, or twice, but day after day pushing past the moment of discomfort and fear, and just telling the truth. The more I did it, the easier it became, and the less I had to push.
Once my book was published, I began to hear back from readers, many of them visually impaired, many of whom shared stories that sounded startlingly similar to mine. More than a few women confessed they’d kept the disease hidden, but wanted to start being honest about it.
These women are leaning in, too, and it’s a privilege to be even a small part of that process.
Nicole C. Kear is author of the new memoir Now I See You (St. Martin’s) and she lives in Brooklyn, NY with her husband and three children.