brain fair…

Last Saturday, March 16th, was the American Academy of Neurology Annual Conference and Brain Fair.  This year it was located here in southern California, so I volunteered to help out at the Dysautonomia International (DI) booth (DI is a wonderful organization that promotes . The Conference lasted all week with different speakers on important neurology topics.  However, the Brain Fair was a one day event open to the public. There was food, music, plenty of information and stations where visitors could get certain aspects of their health checked, such as blood pressure, neurological responses, ears, etc.

Many other organizations had booths set up as well to provide information and answer questions.  There were six of us at the DI booth throughout the Brain Fair.  Our booth was quite popular – I’m guessing it didn’t hurt that we had six young, attractive, outgoing ladies to interact with the visitors. People from all backgrounds stopped by the booth – doctors, nurses, other neurological patients – and only one or two had ever heard of dysautonomia. But, that was the whole point of having a booth – to get the word out! Every single person who stopped by our booth listened intently and asked questions. Some stayed for just a few minutes, and others hung out for over a half hour asking all kinds of questions. The response from the Brain Fair attendees was wonderful!

I was a little nervous about being at the booth – even though I have dysautonomia, I don’t know that much about it. I don’t know why I have dysautonomia, or how I acquired it. Although it may be genetic, no one else in my family exhibits any of the same symptoms. I don’t fully understand the intricacies of the autonomic nervous system. After all, I’m an attorney – career-wise, I may be as far from a doctor as you can get. Except that we both go to school for a ridiculously long time. And carry malpractice insurance and buttloads of student loan debt. And are totally awesome.

I was concerned that when people came to the booth and asked that obvious first question – “just what IS dysautonomia?” – I’d stare blankly and mumble something incoherently about pots and brain fog. So, I sat idly for the first few booth visitors to see how my fellow booth babes handled the questions. Finally, an older gentleman approached my side of the booth and asked the inevitable question. My pulse quickened, a drop of sweat developed on my furrowed brow. I looked into his eyes, batted my eyelashes, and my patented (actually, patent-pending) one-sided smirk came across my lips. I hoped to mesmerize him with my obvious charm so he’d forget why he was there. But, to my dismay, no such luck. It was clear I was going to have to answer his question. I opened my mouth to speak, not really expecting anything to come out, when to my surprise, I gave the most impressive soliloquy since Shakespeare. Except that, to my knowledge, Shakespeare never gave soliloquies about dysautonomia, so really the most impressive ever.

I told this nice gentleman (who probably, at this point, regretted his question) about how dysautonomia affects the autonomic nervous system and causes seemingly unrelated symptoms – that, because of the apparent unrelated symptoms, it can take years to get diagnosed. I told him that most doctors weren’t familiar with dysautonomia, and those who were often believed it didn’t really exist. No cure, only treatment, sometimes merely adequate at best, and a difficulty accomplishing everyday minor tasks. I recounted fascinating stories of young women whose lives had been turned upside down due to this condition. The man listened and nodded, waiting for a break in my monologue to ask his questions. How could people work/go to school like this? Why isn’t the medical community doing more for dysautonomiacs? How did I get to be such a wonderful orator? (I may have made up that last question).

I was happy that I had drawn this man in, that he was interested in hearing more about Dysautonomia International and the illnesses it represents.  We talked for a few minutes more, he took a brochure from our booth for more information and continued on his way. I smiled, pleased that one more person now knew about dysautonomia. BAM, nailed it.

The Brain Fair was a wonderful experience. Although I talk about dysautonomia here on my blog and occasionally to friends and family, I’ve never really explained it to perfect strangers, especially in just a few minutes. It’s a challenge to condense a description of a complicated illness to just 60 seconds or less, and to do so in a manner that explains to people why they should care. I actually learned a lot about my own illness that day.

Additionally, we met some amazing neurological patients. It was eye opening to have perfect strangers share their condition with me. I met one woman, Susie, who had suffered a traumatic brain injury while being robbed. The damage to her head was so bad that she had to undergo numerous facial reconstructive surgeries and joked that she sets off airport metal detectors due to all the hardware in her head. She has difficulty talking, remembering basic tasks like how to tie a shoe, and read and write. Yet, Susie had the best sense of humor, especially given the overwhelming challenges she faces.

I was very humbled by my experience at the Brain Fair and look forward to the opportunity to participate again in the future.

“Tell me and I forget. Teach me and I remember. Involve me and I learn.” – Benjamin Franklin

Stay tuned.
– L

Disclaimer: This post chronicles my experience at the Brain Fair and is not intended to speak on behalf of or describe any particular position of Dysautonomia International.