Freelance writer Jesse Ferguson shares his story in a four-part series
The following story is the third installment in a four-part series chronicling writer Jesse Ferguson’s experience living with an acquired brain injury. Read Part 1 and Part 2 of the series on 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 30th year from complications resulting from the injury.
By: Jesse Ferguson
In Part 1 of this story, we introduced the topic of acquired brain injury (ABI) while Part 2 introduced a few victims and left off with some of the possible problems left in the wake of the injury. Continuing:
As a direct result of my accident, my ability to move was literally forgotten.
I would have to learn to move all over again. Speech and physiotherapy were amazingly tough to deal with, especially at first, because I knew exactly what I wanted to say and do and yet, like a jammed gun, I just couldn’t fire; I couldn’t do or say what I wanted.
In many cases, I couldn’t say anything at all.
It’s comforting knowing I defied doctor’s expectations and can walk again. However, if you see me walk, there is clearly something wrong. It isn’t what anyone would call smooth. My knee snaps back erratically when I step and it’s ugly. But I can walk…
Speaking is more of an issue. There are times when my voice just doesn’t activate. Josh Demeulenaere and Chris Burggraeve, other ABI victims, also experienced speech issues stemming from their injuries. They both speak better than I do, but their pitch and inflections aren’t normal. All three of our voices turned nasal, volume deceased, pace of speech slowed, and words tend to blend together.
Speech is an area where we notice a heavy barrier to the outside world.
“It really annoys me when people ask my mom about me,” Chris said, “when I’m right there.”
I, too, find it demeaning when the person I am talking with feels the need to resort to whomever I’m with to “translate.”
We definitely notice when someone doesn’t hear us correctly. The tendency is for people to panic when they’re unsure. ABI rehab therapist Gordon Leenders explains: “When people first don’t (understand), they become uncomfortable. To alleviate their discomfort, they may leave. But if they just be patient, more often than not, they’ll understand.”
If I’m not understood after a few tries, I’ll bust out my phone and text for understanding’s sake.
Josh, Chris, and I also noted that we benefit from people trying to listen. Perhaps it’s an unconscious thing that we know our efforts to talk stand a chance of being heard (literally).
It was hardest to cope when we were first injured and our deficits were new and most pronounced. One major obstacle, physically, was the stairs. If there weren’t railings, there’d be no way we could climb them.
Another issue is apprehension. Due to my injury, I’d be so afraid to slow people down on the stairs, I’d let everyone go ahead of me. If people were around, my body would get so tense I’d be prone to take missteps (no crowds for me for a long time…).
The hidden disability factor applies here. I look normal so it seems I should be able to do things like climb stairs. Some people are baffled when I couldn’t. I’ve received many WTF-looks as a result.
The assumptions can get pretty hurtful. “In general, people assume the worst,” Chris suggests.
Norman Doidge, in his novel titled ‘The Brain That Changes Itself,’ explains: “(We) long for a connection to people and feel hurt when normal people don’t look (us) in the eye.”
People are usually unaware of all of this, unless they get a reaction. For me, verbalizing this discontent is difficult when emotions are flowing and the verbal outlet is blocked. Josh, though, wasn’t afraid to point out when people screwed up. “This is just an effect of the injury!” Josh expressed in boiling frustration, responding just like he had in the past.
“I just want people to give me a chance,” he said candidly after. “Some people act like I have some kind of contagious disease.”
I understand that. Myself, I’ve been asked if I’m on illicit drugs when it’s just the effects from my injury. One dude exclaimed to me “I want some of what you got!”
Oh yeah? Trust me man, you really don’t. Now get out of my face.
Chris, too, feels the sting of uninformed assumptions, but he has a strategy: “Over the years, I’ve built up an immunity. Now I just brush it off,” he said.
This takes years off tolerance and experience. And we all know there’s no great way to deal with this.
Ultimately, any assumption having to do with something as complex as brain injury is ludicrous.
– Read the gripping fourth and final instalment of Jesse Ferguson’s story in the next month’s edition of BScene. Reach Jesse at firstname.lastname@example.org.