Understanding Brain Injury, One Question at a Time

07/27/2017 11:01 am ET Updated Jul 27, 2017

My first day of eighth grade was just weeks away, and I needed new clothes. As a vulnerable 12-year-old girl, the last thing I needed was to show up to the first day of school wearing last year's boot-cut jeans and platform sneakers. 

So, we headed to the department store, my grandma in the driver's seat, my mom shifting quietly in the front seat. The three of us took the elevator up to the girls' clothing department, and I started browsing the racks, pulling one sweater at a time. I turned around to find a store associate, ready to start a dressing room, when I bumped into a middle-aged woman, eyes wide with curiosity.

"Dear, what happened to your mother?" she asked, her nosiness eclipsing any possible concern.

"What?" I replied. I was back-to-school shopping. Why was this stranger asking me about my mom?

"Well, she's in a wheel chair, and she has that big scar on her throat from a... oh, what is it called?" 

A tracheotomy, I thought to myself.

"...my guess is a stroke, but I'm not sure why..." 

Before she could finish her sentence, my grandma - pushing my mom through the crowded aisles - came over to where we were standing. I think grandmas can sense when their granddaughters are in distress, and I'd found myself in distress quite often since my mom's brain injury earlier that summer. 

"Can I help you with something?" my grandma asked the woman, clearly not interested in offering her any help at all.

"Oh, well I was just wondering..."

"No, you were just leaving."

While this woman had no business interrogating a teenager about her mother's medical condition in the middle of a department store, I would come to find that her behavior wasn't uncommon. At movie theaters, movie-goers watched our family of five take over entire handicap rows. In restaurants, people stared as my mom choked on her food. Wherever we went, silent judgment followed.

Was judgment the right word? These people, staring at my mom in her wheel chair, they were strangers who knew nothing about her condition. Were they judging her and us, or were they simply uneducated?

As an impressionable 12-year-old, it was hard to recognize the difference; but now, I see that most people simply don't have the information they need to understand brain injury. For example, people staring in restaurants didn't understand that my mom choking on her food was a neurological side effect. If they had known, perhaps the stares would have disappeared, or at the very least, lasted a few seconds less.

But I couldn't just lean over in a restaurant, introduce myself to onlookers, explain the neurological details of brain injury, and then return to my meal. I couldn't ask the woman from the department store to sit with me in a dressing room while I explained the cause of the scar on my mom's neck. Educating each stranger in each instance wasn’t realistic. But could we use those invasive questions and uncomfortable stares to create a bigger educational opportunity?

Last year, my two brothers and I decided we wanted to try to do just that. We wanted to ensure that fewer little girls are cornered while back-to-school shopping, or stared at while sitting with a disabled parent, or asked questions they don't yet know the answers to. We wanted to help others avoid the embarrassment and isolation we felt as kids. Most importantly, we wanted to build a safe space where thoughtful questions can be asked. 

In September 2016, we hosted a fundraiser called Let's Put Our Heads Together to benefit Brain Research Foundation, an organization that funds only the most innovative neurological research. We raised almost $25,000, but the most overwhelming result was the reaction from the community. Individuals were compelled to share their own experiences with depression, or a grandparent's battle with Alzheimer's, or a sibling's frustrating struggle with autism. They wanted others to learn from their stories. 

In January 2017, with 15 of these brave individuals, we formed the Brain Research Foundation Young Leadership Board, which will host the 2nd Annual Let's Put Our Heads Together in Chicago on September 7. The board works to support Brain Research Foundation through fundraising, but we also foster a community focused on education - and where asking questions is encouraged. 

Looking back on that afternoon in the department store, I'm not mad at the curious woman. I'm not embarrassed by her questions, although I'm sure I was at the time. Instead, that woman has inspired me to answer her questions, proudly, and as publicly as possible.

To buy tickets to the 2nd Annual Let's Put Our Heads Together fundraiser in Chicago, please click here.

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