Imagination is a powerful tool. In many cases, we use our imagination to “fill in the blanks” when we don’t have all the information that we need. Yet many times our imagination concocts a reality that simply isn’t accurate. And in most cases, this false reality is frightening.
When we discovered that our Melissa had a chronic, life-threatening, incurable disease our first reaction was to learn everything we could about her disorder. But in 1988, with no Internet, we were relegated to medical journals and a smattering of articles—all written well beyond any comprehension we had. We knew that at four days old, she had brain damage … but how much was our question … and the answer was “we don’t know” and “only time will tell.” The medical journals used words like “poor prognosis” and “unknown life-expectancy.” So with this limited information, we were forced to use our imagination to fill-in-the-blanks. And that scared the hell out of us!
Flash-forward twenty-two years.
A simple Google search on Propionic Acidemia brings forth a wealth of information on Melissa’s disease. Much of it is written by and for parents in much more understandable terms. And while management of this disorder requires care and diligence, our experience has proven that the diagnosis is not an imminent “death sentence.” What’s more, through organizations like the Organic Acidemia Association, parents can connect and answer questions that help fill-in those blanks. Over the years, we have found that while every person with PA is unique, they are amazingly alike. Through other parents, we have found the same pattern of delayed development, unwillingness to eat, and frequent illness requiring hospitalizations. Being the parent of an adult with PA who has navigated this path, we are able to share our experience, providing knowledge that replaces imagination … and reduces fear!
In many ways, having a diagnosis can be a blessing. That’s because knowledge about the disorder can be sought as a way of alleviating the fear. Yet there are many parents whose child has no diagnosis. Their journey is much more harrowing because they have little information available to them. The parents that I know whose child has no definitive diagnosis spend a lifetime searching for an answer. My heart goes out to them because I realize that they are forced into a state of constant fear because they lack the knowledge the desperately need.
I’m curious about your personal experience. Do you believe, as I do, that fear is the absence of knowledge?
PEACE