This was my last day of work in Okinawa with Richard and Makiko; it is always sad to see it end. I love the people with disabilities I have met during my time in Okinawa! The people are warm and seeking hope!
That brings me to the program today and how personal it was to me. It will be of no surprise to many of you that I had the Consulate arrange a meeting with the epilepsy community. It is so important to me when I travel to meet people in the area, like me, living with epilepsy. As a woman living with epilepsy, I want to reach out to others in the community and share my story to help them to understand that epilepsy is just part of who they are – it is does not define them.
In many countries, it is so incredibility difficult for people with epilepsy to live without shame or to live a hidden life. The stigma is horrific and the views of family members only perpetuate that stigma. About 15 people attended this meeting including people with epilepsy, parents and other supporters. The epilepsy advocacy community in Okinawa is very small. The epilepsy society is run by women—mothers of children with disabilities, and they were so thrilled to meet me. The one young man with epilepsy who attended has something very rare – he has a job! He works at a bank, but had to get a slip from his doctor telling his manager he can work. Everyone must declare their disability on the company application. If the employer finds out you did not disclose you have epilepsy and you have a seizure, you will be fired for not being truthful on the application. He said he is so lucky to have his job. He told us how long he looked before someone would give him a chance. I was thrilled because he said he is not ashamed he has epilepsy. Once again, this is very rare.
The other man with epilepsy who came to hear me speak was so sad. He does not work, and he is so ashamed he has epilepsy. He told me his two daughters have epilepsy, and he is ashamed he caused this to happen. He also said he believes he is weak and not worth anything. I almost cried when I heard him and others speak. We have so far to go in the world to conquer stigma, and it will be hard. If we can help even one person, that is a success. At the end of the program, this man told me he now felt differently about himself and his daughters. He said now that he met me and listened to my message, he knew he had worth. I have no words to tell you what this did for me. This made my entire trip a success!
I will always fight for others living with epilepsy. No matter where you live—a seizure is a seizure!