Hermine Saunders: Learning is a lifelong adventure

"Lifelong learning" is a term much bandied about for and among an aging population. Along with bodily exercise we must exercise our minds as well. We are told, and rightly so, that keeping our minds active can help our overall health. In fact, it is very befitting that as we age we challenge ourselves to continue learning for as long as we can, to indulge our minds in new explorations and passions, to pass on our knowledge to others.

In writing "Mandy's Story," a book about Amanda Kent, who was born with spina bifida, I can say that I am constantly learning, constantly being challenged to look beyond myself and my experiences, constantly facing my own limitations to write an accurate yet readable and engaging story about someone else.


The things I'm learning can be categorized under certain headings. For example, the health issues brought on by a birth defect challenge my sensibilities. Even as I'm in the midst of writing about Mandy's life, I'm on the roller coaster ride with Mandy and her parents with all the ups and downs of her constantly changing health status.

Along with the health issues are the treatments administered in the hospital by the doctors and therapists who treat Mandy and the necessity to understand the what and why of those treatments. Health issues that have been long-standing and constant for more than 36 years also demand an answer to the question of pain and suffering, a topic that hasn't been satisfactorily answered since the biblical Job.

But for sheer lifelong learning, mastering medical terminology to make this story realistic and true is a real challenge for someone who has studied literature and writing. The terms I'm learning do not roll "trippingly on the tongue"; rather, they require hearing them a number of times, looking them up, and practicing saying them over and over before they become almost second nature. And even if the terms are already known, their medical association must be mastered in order to clarify meaning in context. For example, ventilator seems easy enough but when used in the context of Mandy's breathing and what that ventilator can do to her ability to swallow and talk is anything but simple.

Spina bifida as a diagnosis is bad enough, but hydrocephalus myelomeningocele is the most serious form of spina bifida. Wrapping my tongue around myelomeningocele is difficult, but getting my mind to comprehend its severity is even more difficult. Other terms may not be as difficult to pronounce, but they are equally difficult to comprehend in the context of a person dealing with them.

Can you picture a Chiari malformation in the brain? Do you know what an Ommaya reservoir is and how it is used? Have you ever experienced dystonia or known someone who has? Perhaps you have heard of a valgus deformity or a staghorn kidney stone. Perhaps, too, you know the term stoma. Or, did you know that doctors have collagen for the vocal chords and not just for wrinkles?

I am finding that a little knowledge is a dangerous thing, as the saying goes. Looking up pseudomonas frightened me, but not the doctor treating Mandy.

Yes, I am learning a myriad of medical terms, but they are not merely words. They are intimate to someone's life, even define Mandy's life, and are therefore meaningful to me as the writer of "Mandy's Story."