In the last few weeks I've been asked questions I couldn't answer, an odd feeling considering they were questions about me.
From the time I can remember it was something I was told never to talk about. "People won't understand you, they will judge you" Not even close family knew the secret. I thought everybody went to doctors and therapy every day of the week. It was the 1970's and 80's and I guess times were different....but I have never understood my Mom's need to keep an obvious secret.
I have wanted more information about me and my diagnosis for a long time, but where would I find it when the only people with the answers are long dead and the medical records are two thousand miles away in a different country.
Last week after more questions I couldn't answer, I felt to look through some of my mom's personal papers again.
A beige binder labeled 4403- Developmental Disabilities in green sharpie. I've seen it before but this time I read the 30+ pages printed off an old dot matrix printer that were inside. My life story of sorts, written by my secret keeping mom as part of the completion of her special education diploma the year we came to live in to Canada in 1988.
Answers....in her words....
I was devastated, more by the not knowing than anything else. I remember my mother's advice as I stood sobbing over the crib, "Call the doctor. Tell him what you think, and see what he says. Whatever it is , once you know, you can begin to deal with it. " Funny now to realize that once we had a name we never told mother.
At seven weeks was the orthopedist was the first to confirm the diagnosis, at 9 months the pediatric ophthalmologist reaffirmed the diagnosis, approaching two the pediatrician reaffirmed the diagnosis and I began orthopedic, physical, occupational and speech therapy.
Would we label Robin for the world? What would happen in school? Would teachers use the label as an excuse for their failure to teach? We knew by know how teachable Robin was even though we could not anticipate where she would plateau. Would she be able to keep up?....
Distance from family and our jaded perspectives as high school teachers, coupled with past records of seeing others deal with their own children, played part in the decision to keep separate public life from medical life. No labelling... A decision not taken lightly. A decision that sometimes left us between a rock and a hard place. A decision that called upon our ingenuity. But a decision never regretted, never doubted. Those who had the knowledge and expertise to deal with Robin's needs would recognize and deal with them, label or not. Those who could not see the problems would only use the labels as an excuse. This was proven over and over. Our decision validated! The anonymity of a large metropolitan area facilitated the façade.
Congenital spastic hemiparesis. CEREBRAL PALSY. Right side effected more than the left in a child that is right dominant. Nystagmus, Strabismus, Hyperopia (+5), Equino Varus (left foot), Valgus (right foot), Ataxia, speech involvement, fine and gross motor involvement, no protective defenses, estimated bright normal intelligence
I had to look up nearly every word as I read this. Big words for things I still live with every day.
The first three are vision issues and explain why I have no depth perception.
The next two are foot deformities caused by muscle contractures by ten my feet were pointed 45 degrees inward with my heal bones curved under. Major surgery released the contractures in my arch and took out the curve to the heal bones pinning them back into place.
Ataxia means lack of coordination, and explains my ease of falling and stumbling, and a bunch of other things.
The other four things are self explanatory.
I have gone through many emotions as I've read her words. Her justification of the secret keeping hurts more now than I imagined the truth would. Who was she protecting more me? or her? Fear and shame do funny things to people.
The secret didn't change my reality of cerebral palsy. It made things more difficult for me as a child...Imagine being shamed in front your entire class for peeing your pants for the third time that week by a teacher who didn't know. Or being more than a lap behind everyone on the track and being called lazy across the field. Or having to do an assignment over and over again because your penmanship is horrendous. Or being sent to detention because the muscle spasms in your feet and legs were so bad you couldn't stay still in your chair one more second.
Mom went to great lengths to keep the secret. She hid my casts or orthotics in pictures. There are no pictures of me in a wheel chair, even though I spent two different school years in one. Therapy was accessed privately an hour away from our home in orange county. I was not allowed to participate in any resource services offered through the school.
Mom's words again....
CP is a life long condition. There are no cures, only coping strategies. For children like Robin, its implications will be different at times different times in their lives. And Robin will become aware of it in due time. She has learned to cope and all indications are, that she will be a normal teenager. One only needs to look at where Robin started to see how far see has come, to see the payoff for the tremendous investments...
To the unschooled eye Robin is "normal" -or should we say "without disabilities" And the implications of this are not lost.
There is gratitude for all the time and tenacity Mom poured into my treatment and care, the achievement in that will never be lost on me . The heartache for me comes in her need for a secret kept. We never talked about it. By the time I was old enough to know what questions to ask the answers were lost in her troubled mind.
CP still is an ever present friend. I am affected every single day with a body that doesn't always cooperate.
But the secret never needed keeping...and I never plan on achieving normal anyway.