They said, “Put him in an institution. He's going to die anyway. Or he'll be retarded. You're young, you can have more children. Just forget about him.” This was the advice my mother's older sisters gave her when I was born with spina bifida. It was 1949. Spina bifida treatment was primitive compared to what modern surgery and care can provide today.
I was born with a meningocele, the rarest form of spina bifida. My parents were factory workers in a small Pennsylvania town. I was a deeply troubling complication for my family. Considering all the factors surrounding my birth, my social and medical prognoses were fairly grim. At the time, my oldest aunts worked in a state institution. Although neither was medically trained, they had seen the harsh reality of birth defects. Their advice was based on their experience and surely grew out of loving concern for their baby sister. It was powerful counsel: my mother was the youngest of nine children, and, as was typical at that time, the eldest siblings often cared for, even acted as surrogate mothers for, the younger children. For that time, their advice was not to be quickly or lightly dismissed.
I do not know how my mother—who passed away years ago—came to fight “common sense” and choose to take care of me at home, no matter what.
Reportedly, I didn't walk until I was 33 months old. I never developed hydrocephalus, as many children with spina bifida do. In elementary school, I had bouts of bowel incontinence. In time, it became clear that my right leg and foot suffered sensation impairment, which led to numerous childhood injuries. Both my feet ended in “hammer toes.” By my late teens, I was diagnosed with bladder problems as the result of spina bifida and had to regularly consult with a urologist. By my early thirties, I was using a catheter to drain urine from my own bladder.
My symptoms have progressed over time because of spinal cord tethering, a symptom of spina bifida that limits movement of the spinal cord within the spinal column. I can walk, but my legs have some functional weakness and consequently my balance is poor; I use a cane when I am tired or need to move around for extended periods of time. I cope with chronic back pain. As a young adult, I spent too much of my life trying to be “normal.” It isn't usually apparent that there's anything significantly wrong with me. I can walk, and those bodily functions that need special attention are invisible to the general public.
My mother always told me that I had to go to college because I couldn't do manual labor. Being nudged into college, I gravitated into science teaching and later nursing; both reflected my interest in the human body. I taught high school science for 30 years. I fathered two healthy children and eventually became a registered nurse. In 2001, I retired from teaching and nursing. In 2004, I resumed teaching as a faculty member in biological sciences at Kent State University at Ashtabula, OH.
I've done okay, but only because I wasn't institutionalized as an infant. Additionally, although my family imposed certain restrictions on my childhood behavior, they never treated me as a victim. My life serves as a testament to the power of one person's truly unconditional love, uncommon bravery, and optimistic trust. I wish my mother were still alive today to see the ongoing outcome of her especially imperfect baby.
Happy Mother's Day, Mom!
Thanks for everything. Really, I mean everything.