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When I Needed My Doctor to 'Take a Chance on Me'

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“If you change your mind, I’m the first in line.  Honey, I still have a disability, take a
chance on me.”

I borrowed this popular ABBA lyric and added a bit of a Mighty twist to describe my most recent experience with my new neurologist whom I’m seeing for ongoing traumatic brain injury issues.

I’m on head injury number four. Number one was pretty bad and recovery never fully happened; number two was minor in comparison to number one but certainly put a temporary dent (both
literally and metaphorically, considering I got hit with a milk crate) in my life plans. By number three I knew what I was doing. But number four was a whole new ball game.

A few weeks after my fourth head injury, I started to experience symptoms that were new to me.  After 10 years of having a brain injury, it’s hard for a symptom to shock me, but this took a huge toll on my health and life. I’m no stranger to the odd sensation that follows a hit to the head, but
there were no words to describe what I felt for five months after my last head injury.

The best word to describe them was “episodes” and they happened multiple times a day — shaking head, fast blinking, stiff arms and blurred vision preceded by an aura-like tingling sensation in my legs, all the while remaining conscious. When I wasn’t shaking all over, I was walking around more fatigued than I had ever been with increasingly concerning brain injury symptoms, both old and new. I insisted on working through these episodes, which meant a lot of people saw them.
Based on their observations and everything I’d read, they looked like seizures.

It’s not uncommon for people with traumatic brain injuries to develop seizures/epilepsy whether that is a day, a year or a decade after the initial injury.  This made sense until all of my EEG tests were normal.

When my tests came back clear, I was devastated. If it isn’t epilepsy, what is it and how do I
get it to stop?  If I have no test results to back up my story, is it even true to doctors? That’s when my neurologist recognized that even though I may not have epilepsy, I still have a disability — and took a chance on me.  When he asked if I wanted to try something anyway, I was the first in line (get the ABBA reference now?)

My neurologist prescribed me a low-dose of anti-seizure medication that works by calming the brain, and it worked! After I got over the slight hump of side effects, I felt like myself again. I
have had no episodes and while I still have brain injury symptoms, they are my usual ones that I have learned to manage. My co-workers have commented that I got my personality back and I have way more energy that I did before. I also have more time in my day considering I don’t have to stop to have these weird shaking episodes that take time to recover from.

This has also given me a renewed sense of safety. A medic alert can only do so much when you
live alone in a big city like Toronto. Speaking of big cities, I was able to recently take a trip to New York City by myself; without this medication, I would have spent more time in the hotel room resting that I would have seeing New York.

Disability is understood to come with symptoms and side effects that can often not be explained by medical technology or med school books. Any time medication was brought up as an option by doctors before my current one, they mentioned unpleasant side effects.  My life was already unpleasant, so I was willing to risk the side effects of medication if they were willing to pull out the prescription pad and let me try something new.

A common barrier for people with disabilities is getting doctors to take our symptoms seriously and understand how greatly they impact our lives. We are the first in line when you change your
mind about us; we still have disabilities and we want you to take a chance on us.

Getty image by Utah778.

Originally published: June 24, 2018
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