Beginnings, Part II

So, here I was, a freshly-minted deaf baby with hearing parents who, like maybe 90% of everybody else out there, knew nothing about deafness whatsoever.

Mom gives me different versions of the story every time I ask her, but this is what I gather: we started off with Signed English, from which the entire family developed a working vocabulary. We have Christmas home videos of mini-me scolding my mom in sign, “don’t step on the [gift] box!” She still has the huge dictionaries that she bought to teach herself sign language. To this day I still communicate with my siblings mostly in a smattering of Signed English and talking, although both of them know the Cued Speech system and can use it haltingly. Dunno why; that’s just how it turned out in our family.

My parents didn’t have much faith in their local school system, so they opted to homeschool me first. Mom, in particular, felt that I was far ahead of my peers academically; she tells me that even as a toddler, I showed high intelligence. Mom had read about the dismal literacy rates among deaf children, and she did not think that I would have the means to reach my fullest potential in our local programs.

When I was four, she read “a big book on Cued Speech”[*] that featured Benjamin Lachman and the Alexander Graham Bell Montessori School in Mount Prospect, Illinois. Now, being from Chicago, Mom knew where the school was and called them. After a conversation with one of the directors there (Ann Bleuer?), Mom decided to enroll me in AGBMS. At the time, we lived near Milwaukee, Wisconsin.

She tells me that almost instantly she saw progress in my reading and spoken language skills. Mom learned the system in one week or one month (again, different versions), although it took her a few more months to attain fluency; and she became a transliterator for another cueing kid in the Chicago district. So for the next five years, we would wake up at 5am to make the hour-long drive down the I-94 to Mount Prospect, where she’d drop me off at school then go to her job as a transliterator at another school. When school went out, I’d wait for her to come pick me up so we could make another hour-long trip back home.

Looking back on it, those early morning memories seem so surreal. I remember dawns full of fog so thick, we could only see the red tail lights of other cars. A pheasant running out in front of us in pouring rain, its plumed tail held high. Whiteout blizzards, and the little red doodle toy that I drew compulsively on, and donuts from the bakery near the school. I liked the rectangular ones with vanilla frosting. Still do.

[*] I’m guessing it was The Cued Speech Resource Book for Parents of Deaf Children by Dr. Orin Cornett and Mary Elsie Daisey. The more recent version, the one I call the Cued Speech Bible because I can never remember its full name, is Cued Speech and Cued Language Development for Deaf and Hard of Hearing Children, by Carolyn LaSasso, Kelly Crain, and Jacqueline Laybert.

Beginnings, Part I

I was born hearing with Hirschsprung’s, a disease that makes you stop pooping. In slightly more scientific terms, part of your intestine stops working. This means your body can’t eliminate waste, so it just builds up. Without treatment, it can be fatal.

So I was in and out of the hospital for the next two years, and underwent five surgeries. On the last one, at eighteen months old, I got an infection. I became profoundly deaf from the antibiotics they gave me to treat it. My mom thinks it was the kind of thing you can’t know about until it goes wrong. Twenty-some years later, I took a college class on genetics, did some research (read: very intense googling), and now I figure I carry a genetic defect that made me more susceptible to ototoxic medication. This is the long, boring explanation that I wrote in my final paper:

The most common of these mutations is the A1555G variant on the MTRNR1 gene, accounting for 1% of hearing loss in Caucasians and higher percentages in other ethnic groups. The A1555G mutation substitutes an adenine base for a guanine base, interrupting mitochondrial protein synthesis and impeding OXPHOS production. Though A1555G does not always directly cause hearing loss, it does make affected individuals more susceptible to the ototoxic effects of aminoglycoside, which is used in several medications. Kokotas et al. speculate that the A1555G mutation changes the 12S rRNA gene so that it resembles the 16S rRNA gene, which is a target of aminoglycoside action; this may explain aminoglycoside’s pronounced effects on the A1555G mutation (384, 387, 388; Guan 1792).

Anyway. The diagnosis. My parents were stunned. My grandma wanted to sue the doctor and the hospital; my mom didn’t see the point in it: “Money won’t bring back her hearing.” Now me, I’m glad we didn’t sue. The doctor who treated me died of cancer a year later and left behind a wife and two children. Had he lived, I think I’d have liked to go visit him, and tell him I was never angry at him. I didn’t forgive him, because there was nothing to forgive.

The truth is, I can’t miss what I never really had. I grew up deaf. It’s what I know, and it helped shape who I am, and how I see the world. At the same time, it doesn’t define me. I’m me, and that’s all there is to it.

At the time, my parents couldn’t have known that. They knew nothing about sign language, Deaf culture, auditory-verbal therapy… my mom’s only experience with deafness was a deaf girl in college that she barely understood (then again, my mom is terrible with accents). Their introduction to Cued Speech would come a few years later. In the meantime, they had a newly deaf baby, and no idea what to do with her.