Tuesday, June 28, 2016

I Never Thought I'd Cry So Much Before Lunch

"I never thought I'd cry so much before lunch". That was the remark of the young man I was sitting next to at lunch. Jennifer Brea was the speaker who brought him to tears.

Jennifer was one of the first TED Fellows in 2009. (See here for more about the TED Fellows). When Jennifer became a TED Fellow, she was an aspiring Ph.D. student in Political Science at Harvard. Then, after a severe infection with a very high fever, she was left with devastating symptoms which amounted to her barely being able to walk.  Gradually she developed neurological symptoms as well. She showed us a slide of her attempts to draw a full circle - it was a crude half circle.

Jennifer gave her talk sitting in a wheel chair. She had several lengthy pauses to collect her breath, or to refer to her talk on her iPhone ('My brain doesn't work like it used to'). Because loud noises are painful for Jennifer, we were given instruction in sign language for applause: wave your hands in the air with spread fingers. The 'applause' was thunderous during these pauses. The TED Fellows were waving their hands wildly, and everyone seemed to lean forward to try to transmit their energy to her.

Here's the rest of Jennifer's story.

As ill as she was, isolated in her home or even her bedroom, multiple specialists were unable to pinpoint the cause of her problems. Eventually Jennifer was handed a diagnosis of conversion disorder, which attributes physical symptoms to psychological stress. Jennifer characterizes it as a renaming of the old concept of female hysteria, or attribution of symptoms arising from a repressed memory of a childhood incident. Her condition was deteriorating and the medical profession was not providing any help at all.

Jennifer says that the Internet saved her.  There, she found a community of people who shared her symptoms. Gradually she was able to figure out she had Myalgic Encephalomyelitis (ME), a disease affecting  15-20M people worldwide and 1M in the US, the majority of whom are women. As well as debilitating physical symptoms, which render some victims bedridden and isolated, it also has neurologic affects to a point where some sufferers can't tolerate sound or tactile stimulation, and experience cognitive losses.

Sadly, people with ME also frequently suffer from a denial and misunderstanding of their symptoms. The disease is badly under- or mis-diagnosed, as was Jennifer. Patients can be disregarded for showing symptoms that are 'all in their head'. Very little research money has been directed to studying the disease, but the scant data points to it being an autoimmune disease triggered by a severe viral infection.

After her self-diagnosis, Jennifer finally found a doctor who prescribed a strong antiviral drug regime, and she is improving. She is no longer restricted to her house because she can now walk short distances. The trip to TED is a huge undertaking for her and she will take weeks to recover. However, the chance to address the TED audience was very important, because she wants to bring attention to ME.

Jennifer made a powerful impression on everyone in the room. She was authentic, powerful, and articulate. She touched everyone deeply (even one scientist who had earlier told me she hated all the 'touchy feely' stuff!). And as my lovely new friend Sam said, "I never thought I'd cry so much before lunch". Neither had the rest of us.

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