Freelance writer Jesse Ferguson shares his story in a four-part series
By: Jesse Ferguson
The following story is the second instalment in a four-part series chronicling writer Jesse Ferguson’s experience living with an acquired brain injury. Read Part 1 of the series online at www.bscene.ca.
This story is in part dedicated to the memory of Josh Demeulenaere who lived with an acquired brain injury. He passed away in his thirtieth year from complications of the injury.
In Part 1 of this story, we introduced the topic of brain injury –and the horror of waking up with one– before we left off with the misconception of brain injuries and the fact that issues incurred may not be temporary…
A 1999 novel by acquired brain injury (ABI) survivor Kara Swanson called “I’ll Carry the Fork” includes several eye-popping facts on acquired brain injury that deserve attention. The most disconcerting one, unquestionably, is that victims of brain injury do not necessarily recover. In fact, a full recovery is rare.
Other quick hits as of 1999?
• Every 16 seconds a head injury is sustained in the United States
• Head injuries are the number one killer of Americans under 40 and they kill more people under the age of 34 than all diseases combined
• An injured person’s brain works two to three times as hard as an uninjured person’s and yet produces only half the output
• After the victim awakens –and not all do– they can be in for a long-term hospital stay where they attempt to repair their acquired deficiencies through therapies –such as physio and speech– or counselling sessions
• However, the maximum effort from the brain-injured individual doesn’t ensure maximum success for recovery
Kevin Anstee, an ABI case manager, reports that the most common method of injury is from motor vehicle accidents with persons between the ages 18 and 25. I fit into both categories.
So do Josh Demeulenaere and Chris Burggraeve. We all lived around Brantford when the three of us, separately, fell victim to terrible weather at just the wrong time.
I don’t remember my accident and neither do they. “The first thing I remember is waking up and having my mom’s head on my chest,” Chris said. “And I think that was six weeks after. I didn’t know where I was.”
Josh took even longer before he was able to recollect or communicate. “I think it was something like four months before I was able to say anything,” he said.
Kathryn Graham, a registered massage therapist of Hands-On-Healing in Paris, explains: “I think when a traumatic incident occurs, the brain doesn’t remember as a survival mechanism. If your brain held onto it cognitively, it would be too much with the trauma and emotion to handle. It has to focus on surviving.”
The three of us were told repeatedly how lucky we were. At first, I could not fathom how anyone could consider me lucky. I had just been in a major car accident and had my physical repertoire revoked in full, including walking and talking. Not so long ago, I had machines breathing for me through a trachea tube in my neck. It was a shock, for sure, going from everything to nothing.
I get it now: lucky to be alive. It took a while to process, especially because I was a star athlete, playing rep hockey (Burford), high school basketball (Paris), AAA baseball (Brantford), golf (Burford), among others. I lived for sports, but I can’t play any of them anymore. The competitive spirit is combusting inside me, and now I can’t extinguish it…
On the contrary, mentally, I retained all of my abilities from prior to the accident. For that too, I am lucky… as this is a rarity among brain injured persons.
The other guys aren’t quite as fortunate for that aspect. However, Chris and Josh are both very logical. As Dr. Flor Muniz of Chedoke Hospital in Hamilton explains: “Brain injury can sometimes be called a ‘hidden disability’, as people have problems, but they don’t always show.”
Mentally, the most common problem resulting from brain injury are memory issues. “It’s like my brain turns off at night,” Chris explains. “In the morning, I can’t always remember the day before.” He leaves sticky notes around his house as reminders.
Josh said his injury was 50 percent physical in the beginning, but became 90 percent mental as he recovered physically. His father, Joe Demeulenaere, agrees with his assessment. When Josh came home his memory problems were evident, as Joe reported that Josh once showered 16 times in one hour. “He’d still be wet,” Joe recalled. “But he would forget and shower again.”
The physical issues for Chris and I are evident. Chris has difficulty walking and is inclined to use a cane. He used a walker previously and was earlier confined to a wheelchair, as was I.
Doctors said the left side of my brain had damage so extensive I would permanently lose physical capabilities. Upon my diagnosis, doctors told my parents I would never walk again. None of the doctors that attended Chris, Josh, or myself, suggested that we would be much more than “vegetables” for the rest of our lives. All three of our lives then, out of necessity, became about defiance of doctors’ expectations.
The Everlast song “What It’s Like” comes to mind: God forbid you ever have to walk a mile in my shoes, ‘cause then you might really know what it’s like to have to lose.
– Read Part 3 of Jesse Ferguson’s story in the next edition of BScene
Jesse can be contacted at firstname.lastname@example.org