Diagnosed at 3 Months
Story Written by Author/Self
My first shunt went in when I was three months old. I was born in a small town in Northwestern Ontario, where the local hospital was not equipped to treat me, so I was taken by air ambulance to the Children’s Hospital in Winnipeg, Manitoba. That was in the early seventies.
My original shunt was a VA shunt, which was changed to a VP shunt in 1980, during an emergency revision following a toboggan accident. In 2005, after a few bouts with severe abdominal pain, it was discovered that the lower end of the shunt was irritating my liver, so it was decided the shunt should be relocated to the pleural cavity, near my right lung. A week before that surgery was to take place, my shunt failed completely, and I went from a planned revision to an emergency procedure.
That’s when my life took a dramatic turn.
The day after the emergency revision in 2005, I wasn’t recovering as well as I normally did, and I ended up back in the O.R. for another revision. When I woke up after the second revision, I could only see light and shadow. Upon investigation, it was found that the occipital lobe of my brain had been damaged from a restriction of blood flow to the area, meaning my brain could not process what my eyes were giving it.
Over the year and a half that followed, I regained some of my sights, but to this day, twelve years later, I am still legally blind, with 30% field of view in each eye, and visual acuity of 20/200 in both eyes.
Adjusting to what I call, “life in low resolution,” was not easy. I kicked, I screamed, I experienced periods of depression, and naturally, I thought, “Why me?”
As time went on, I learned new ways to do things, changed careers, and regained much of my independence. But I didn’t do it alone. Right out of the hospital I was connected to the Canadian National Institute for the Blind (CNIB), whose staff taught me how to do things around the house, and got me back into the community. Most importantly though, I had amazing support from my family, close friends, and especially my wife, Cindy. It was not easy for her at times, but she stuck by me, and for that, I will be forever thankful.
One thing Cindy encouraged me to do was keep a journal of my thoughts, feelings, and experiences, to record my progress as I recovered. Those journal entries formed the basis for a book I wrote about my experience called Life’s Not Over, It Just Looks Different. The book was published in October 2016, and to date has sold in 5 countries. You can see more about it here: www.lifesnotover.com
The doctors tell me I likely have many more shunt revisions ahead of me, in fact, I had my most recent operation 18 months ago. It went smoothly, and hopefully, future ones will too.
Having a shunt has made my life anything but boring, and living with vision loss changed my life’s path, but it hasn’t ruined it. I decided long ago that I am on this planet for fun, and that’s how I try to live my life every day.
DISCLAIMER: “Life’s Not Over, It Just Looks Different” is not a publication of the Hydrocephalus Association (HA). HA is in no way responsible for the content contained therein and cannot vouch for its accuracy.
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