I
was so honored to speak at a hearing at the National Assembly on Friday morning. This is the South Korean equivalent of our U.S. Capitol. It was such a special day for me and very personal. As you know, my visit a year ago had a tremendous impact on me, especially when I met with the neurologists who had a concentration in epilepsy. The stigma is horrible in South Korea toward people living with epilepsy. This was the subject at a hearing with over 100 people in the room. The President of the Epilepsy Society, Seung Bong Hong, M.D. spoke, along with other doctors, and me. My speech, and the entire program, was about breaking the stigma associated with epilepsy in South Korea. As an example, people with epilepsy can be fired at work immediately if they have a seizure. Women hide the fact that they have epilepsy from their husbands. When husbands find out, they frequently divorce the wife. Children have been expelled from kindergarten when the child had a seizure. Employment is impossible for people with epilepsy. Epilepsy is considered shameful.
It is such a great honor to be part of the beginning of change in South Korea, with breaking down barriers of shame and stigma. This means more to me than you can imagine. The young woman I met last year who was living with epilepsy and had impacted me so much came back to see me. When she told me that since she met me she had started studying harder and that I made such a difference in her life, I was overwhelmed. She and a few of her young friends, who also have epilepsy, followed me throughout the day, and they wanted their pictures taken with me. This is why I came back. This is what it is all about.
After the morning hearing, I had lunch with the assemblyman and the doctors. The entire conversation was about how we need to work together to create change and how much it means to them that I came back. The assemblyman really impacted me when he said, "You came here to help us. Now I have to do my part."
After lunch, I participated in a press conference with the doctors, with a room full of media. We each spoke again. There were four of us, including a social medical counselor, and then we answered questions. What really got me is when they asked me to stand up and shake hands with Dr. Hong and agree to partner to help people with epilepsy.
The doctors had a VIP room for me to wait before the gala and brought in refreshments. We also met with the CEO of Starkey Korea, Richard Shim, who heads up the parent with disabilities group. He is a wonderful man and a new friend.
The evening ended with the gala celebrating the 22nd Anniversary of the Korean Epilepsy Conference. It was a beautiful dinner with unbelievable entertainment, including classical pieces played by some doctors and two patients. Their performance included five individual pieces, Chopin, Debussy, Mendelssohn, Beethoven, and a South Korean piece.
It was a beautiful evening with my new friends.
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