After twenty-seven years of arrested hydrocephalus (water on the brain), I thought I was done with brain surgeries. My memoir tells of my experiences (2013-2016) when my hydrocephalus re-awakened, and my experiences living daily eith a hidden disability. This is a transformational memoir, I had to realign my future; from believing I’m done having brain surgeries, to slowly realizing I’ll be facing brain surgeries for the rest of my life.
I’m part of the “First Generation”; this generation runs from 1955-1972. It represents the first children to receive shunts to manage hydrocephalus, and live to adulthood. Fifty percent of children from the First Generation of hydrocephalus survivors score 80 or below on standardized intelligence tests. Most don’t live independently. Many suffered noticeable physical or mental disabilities. However, for the past sixty years the First Generation has suffered both visible and invisible disabilities, as well as countless complications and brain surgeries.
My disabilities are invisible. I live with my husband, I received my Bachelor of Arts degree in 1992. Between tales of my brain surgeries during the years 2013-1016, I’ll describe each of my invisible disabilities, and others’ reactions to them.
Why am I the expert to write this book? Who more intimately knows my thoughts and feelings when my hydrocephalus reawakened? Who else can reflect on how hydrocephalus affects my day-to-day life?
There is a prolific anxiety that comes with hydrocephalus; when will the next brain surgery be, because whether it’s in six months, three years or twenty-seven years, there will ALWAYS be another one.
Lastly, who else can explain the sense of mourning I feel for the person I could never become due to hydrocephalus? Who else but me is better qualified to pontificate what my life may have been like had I never developed this condition? How can one be mindful, live in the present, when one’s past currently and will forever shape their future?
In addition to my current memoir I’ve written a number of short stories and poems; and am working on a suspense fiction series. I was also I columnist for a small newspaper, The Country Courier, based in Kamiah, Idaho.
Part of my story can be found at StoryCorps, a division of the Library of Congress.