Rett syndrome as a windowless warehouse, and my daughter inside
A doctor's analogy has helped us visualize how our child's brain works
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The area where I live in central New Jersey seems as if it’s becoming the warehouse capital of the country. For a decade or two, warehouses have been springing up like dandelions, some with recognizable names like Amazon on their signage, others offering no clue to passersby as to who owns them or what goes on inside.
Whenever a new one is proposed, lawn signs sprout in the neighborhoods nearby: “Stop the Warehouse,” “No More Trucks,” and so on. The warehouse generally gets built anyway.
When I drive by these buildings, many of them windowless, all of them blandly ugly, I don’t think of the warehouse wars. I think of my daughter Abby, who has Rett syndrome, because of an analogy one of her doctors offered us decades ago as a way to conceptualize how Abby interacts with the world.
When you see a shaft of light
Abby was born in 1997, when Rett syndrome was still largely unknown and certainly had not been studied in depth. These days, countless studies have been done not only about Rett syndrome overall, but about specific aspects of the condition: auditory processing in people with it, weight gain and loss, biliary tract disease and Rett syndrome, and so on. Just this week, we got an email from the Cognitive Neurophysiology Laboratory at the Albert Einstein College of Medicine in New York, where Abby has participated in previous studies, to see if she wanted to be part of a new study “to better understand how EEG measures change over time in individuals with Rett syndrome and how they relate to Rett symptoms and everyday functioning.”
In short, the picture of what it means to have Rett syndrome is much fuller today than it was when Abby received her diagnosis more than a quarter-century ago, shortly before her second birthday. Back then, becoming a new Rett syndrome family largely meant flying blind. We knew she’d lost speech and hand use, of course, and we vaguely understood that she was cognitively impaired, but it was hard to get a handle on what that meant, because sometimes she seemed to be “all there,” but often she didn’t.
Then one of her doctors, a woman who had seen a number of Rett syndrome patients and was a godsend to us in those early years, told us how she had come to think of what was going on in the minds of her patients.
“Picture yourself inside a windowless warehouse that’s full of boxes,” she said. “It’s pitch black inside, but it’s daytime outside. Every once in a while someone opens the door to the warehouse, and if you’re standing in just the right spot among those boxes, you see a shaft of light. Then the door closes, and before the next time it’s opened, someone moves all the boxes around.”
That simple explanation has continued to ring true through the years. Usually when something funny is going on around Abby, she seems oblivious, but once in a while she’ll burst out laughing. Generally, when we’re watching a TV show she’s not already familiar with, she zones out, but now and then she’ll focus and clearly “get it.” That fickle shaft of light has found its way to her through all those boxes.
Now will someone please prop the danged warehouse door open? And whoever keeps moving those boxes around, knock it off.
Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
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