I have been wanting to read Ryan Knighton’s memoir about his first year of parenting as a blind man since I heard an interview with him on NPR in 2010. Unfortunately, the book proved hard to find here in the States, and when I put it on my Christmas list this year, I didn’t have high hopes. Consequently, I was amazed and thrilled when my in-laws were able to find it for me, and it ended up in my stack of must-reads for this January.
Admittedly, my memory of the book was limited to its topic, and to the compelling section read on This American Life – a passage about Ryan and his infant daughter, alone in a college campus parking lot early one morning in the moments after the girl utters one of the few words she knows (and that her father knows she knows). That word was bear. Very little could sum up the hysteria and helplessness that plagued much of Knighton’s first year better than that scene, and it stayed with me over the last four years.
His storytelling was in equal parts hilarious and frightening, and when I finally got a chance to read about the rest of his experience, I also found it heart-wrenching. In fact, I cried at least once every chapter. I also cried when I finished the book, and when I considered how many obstacles face parents with disabilities. It’s hard to admit, but I’d never given it much thought before. As a teacher, my mind has always focused on the experience from the child’s perspective – how the child, and his or her abilities, fit into the classroom, the wider family unit, and the world at large. It had never occurred to me just how frustrating and frightening it would be to perform simple tasks with a baby without sight, mobility, hearing. While I have been trained, over many years, to recognize the signs of abuse or neglect, of emotional instability in parent or child, of the challenges that exist for a child with special needs, I haven’t given enough thought to how a condition, such as Knighton’s degenerative blindness, would strain a couple and their new child.
Blindness has taught me to move through space exclusively by memory, even in my own home. Rats navigate this way too. Their movements are patterned, and the patterns are remembered by their muscles, not their minds. If a rat runs along the edge of a particular wall on a feeding route, and that wall is removed, the rat will continue to run along the phantom edge. Rats map the ghosts of bygone buildings. I move likewise through my home, habituated to its different turns and timing. That’s why, if I move too fast, or lose track of my angle, I can actually become disoriented in my own home. I live in a habit, not a space.
This is why, as I bolted through the doorway carrying Tess and her soother, I clipped the threshold with my arm. And with Tess’ little head. The sound was like the strike of a hammer on wood.
At that moment, I was introduced to her pain cry, which I thought I knew, but had actually never been heard before. It may have been her first pain from without. She was inconsolable. Me, too.
The ember in my skull felt at its brightest, and the most searing, and suddenly I saw the fear for what it was. Tess, whom I couldn’t soothe, represented the greatest pain I would ever know, should something happen to her, and worse, should I be to blame. Parents endure a constant, low-grade anxiety, it’s true, but the love that fills us is made of equal parts terror. I wasn’t afraid of Tess, but afraid of my love for her. It could, and will, hurt me one day, and so I’d stood back from it, so wary, so taken by self-preservation. I was in awe of this love. I was also ashamed of how I’d received it.
“I’m so sorry, Papa’s so sorry,” I pleaded as we sat on the couch.
Of course Tess couldn’t tell me she was okay, nor could she forgive me. My own pain cycled through my body, as did hers, unable to find an exit. A sadness clung. I couldn’t shake the thought that I’d hurt her. Didn’t matter that it was an accident – I was the cause. My blindness had shown the smallest example of what it could do to her, and to me as a father.
Knighton, as a man and a father, is not any better or worse than the average first time dad. The difference, though, is how hard he has to work for it. Every task he takes on is more fraught. Every task he can’t do is a greater burden on his wife. He is caught constantly in that struggle, twitching between independence and fear, ability and its natural limitations. His struggles and successes are familiar ones, but they’re painted with a new brush here.
For more about Ryan Knighton, head over here.