The Eye-Opening Experience of Writing about Vision Loss
By Nicole C. Kear
I was nineteen when I was diagnosed with retinitis pigmentosa, a degenerative retinal disease that I was told would leave me blind. The very bumpy journey of acceptance that followed (and continues even today) is the subject of my new memoir, Now I See You.
In my early twenties, I hid from the disease in denial. I made the most of the vision I had remaining -- living life boldly, seizing every day – and I convinced myself that doing so would make it easier to watch my vision fade. In my late twenties, after I became a mother, I realized I’d need to confront my vision loss and learn how to live with it. But realizing I needed to cope wasn’t the same as actually coping and it still took years for me to work up the courage to get help from organizations like the New York State Commission for the Blind, Visions, and the Lighthouse. Receiving training and joining support groups were invaluable in helping me come to terms with my vision loss, but it’s still a process I’m in the thick of, and I will be, I’m sure, for some time to come.
Soon after I finished my training, I started writing my memoir. I wrote it for the same reason most writers pen books; because it was a story I felt compelled to tell. My biggest hope was that it would shape up to be a great book, one that resonated with readers, a book that would make people laugh, and cry, and possibly prompt insights. On a personal level, I hoped the process of writing it would be healing, would offer me a chance to make peace with something I’ve had a tough time reconciling myself to. And it did. Revisiting memories I’d tried to ignore liberated me from them. I was able to make some sense of things that felt senseless. At the end of the experience, I felt like I’d found some valuable perspective
But the part of the process that was really healing came after the book’s publication, and was totally unexpected. Even before the book was officially released at the end of June, I began to hear from eager readers, most of whom were people whose lives were impacted by vision loss. The messages trickled in at first, and then, once the book was published, they poured in. Men and women who struggled with visual impairment and their mothers, fathers, aunts, uncles, sisters, brothers, friends. Retirees and middle-aged folks and young adults. People wrote from all across the country and from other countries, too. Readers were excited to discover a story that was so similar to theirs, to that of people they loved, and they thanked me for writing it. In fact, I feel like it’s me who should thank them. Hearing from readers has opened my eyes to a diverse and amazing community of people I’d only glimpsed before.
I am awed and amazed by the folks I’ve heard from. Blind and visually-impaired people are running families, firehouses, corporations, marathons. They’re teaching kids and healing patients and singing opera and editing books. They are living full, spectacular lives, and I’m profoundly inspired by their stories. An ancient proverb, which I quote in my book, reads, “It is better to light a candle than curse the darkness.” I can only hope my book lights a small candle for those who read it; I know that their stories have done just that for me.