Not before it happens the world will never really appreciate the seriousness, pain and agony of having T. There will never be focus on us as a patient group, cause were all weird psychology cases with some silly noises inside our heads, They will never value us correctly, we will never receive the respect we deserve for having to live our days with this horrible illness (!) every day of our miserable lives. They need to be exposed and I think we should put ourself out there so we can be seen!
A great final collective mass suicide would do. I'm in. Better to do something for my illness than to just sit passively taking it up the ass by ignorant doctors and other that doesn't even wanna know about progress. Let's kill ourselves to make a point and to clear path for future victims of T. We need to get some attention to T so a cure can come for our next generations at least, and they come in big numbers.
I want to tell you my story, all about my life before and after T, hope that will help you in some degree.
Before I got T 2012 June 22nd, I am a very outgoing man. I got the guide of God and entered the top 1 Univeristiy here in China luckily, then fell in love with a good girl, my first love indeed. After graduation, I got a good job opportunity in Tokyo, but for our love, I decide to stay in Beijing. 2 years later, my ex went to the Northwestern University Kellogg School of Management for her MBA degree, I went to the States together with her, took the luggage
. After coming back to China, one of her friend want to rent her house so I went there to help move the house.
It was that day, June 22nd, 2012, I slipped down because of the mess room, and my right ear poked by a very sharp thing, I don't want to mention that any more. You could imagine what happened, super hurt and I got severe hearing loss and T onset immediately. After that my hearing recovered with no clue about 80%, but T remains, not very loud. I got a sound generator in Evanston and somehow habituated, but Jan 8th 2013, I did an MRI in Beijing, and the loud noise made my T 3 times louder until today. Very loud, how loud? Sometimes I hear it over the jet engine when I take a plane.
My ex fiancee left me because of my T related depression, 5 years love, and I got injured when I helped move her house, you know the feeling, yes, suicidal, every second.
I continue working in a very busy and tough industry(management consulting, always work until 11 pm or so), and unfortunately I am working in the same company same office with my ex now(actually 5 meters away from her seat), and the office is super silent, you know the feeling when I saw her face and heard the loud T at the same time, yes, suicidal. That is my everyday working life.
But why I am still alive and even traveled around the world to enjoy my life most of the time? 3 things:
1. I trust God, and have hope, faith and love.
2. I am the only son of my parents because of the stupid one-child policy in China, I cannot leave.
3. I have you guys, the TT members, who really understands, and always be with you.
Today is the Chinese new year eve, maybe the worst one since my born in 1987 , but I am typing here to encourage you
@Per, there will be a cure in about a decade, I keep contacting with all top scientists and doctors. You could read my post that today I received an email from Harvard which I thought the best gift for me to begin this new year.
And the worst hypothesis, if you really can't burden the T, if your T is unilateral, you could ask a doctor to cut the 8th nerve, 50% chance to stop it totally, I know a man did that in the hospital, he is very good now with only one ear works, but avoid taking his life instead.
Sorry for the long reply, I am only 26, have no right to educate anybody, but just want to express that we are all with you and understand what you are thinking and talking about, sincerely, hang in there.
Best,
Aaron