This was a letter I wrote to Huey Lewis after his appearance television. Many warriors were disappointed and wanted to be heard. I decided to be the voice. It has liked several times by his manger for social media, sent to representative and handed to the governor of Albama.
Dear Mr. Lewis,
I am the Administrator for “Meniere’s Without Borders” here on Facebook. I, with my team, inspire and help over 1.5k (edited) people global (edited) everyday. Our group offers inspiration, advice, support and HUMOR. Why humor? Well because you and other sufferers will unfortunately soon find out that you need it. Meniere’s Disease is not a choice, how we handle it is. I am truly sorry for your recent diagnosis.
I thank you for your appearance on the Today Show however, Menieres is so much more than it was probably preceived by viewers. Hearing loss and Tinnitus (roaring) is only two symptoms of this monstrous disease. A disease that not many know how to spell, let alone, understand. Vertigo, ear fullness, head pressure, balance issues, vomiting, drop attacks are just a few I’ll mention. Some lose jobs, marriages, relationships, friendships and normal every day activity. You were right that we all experience this disease different. I am going to assume you are unilateral. I am 17 years bilateral (both ears). I don’t feel the true nature of this disease was exposed and us warriors want nothing more than awareness. We don’t want pity or sympathy. As you will learn, you will start to “play well” while some think you “play sick”. You are an amazing musician and I have no doubts that your fans will always stay loyal. Understanding this demon MD (Meniere’s Disease) is going to take much more than 4 mins.
I tell my group this and I want to extend it to you: you must stay positive in the mind. It is key to being a warrior. You don’t know this yet, but MD wants it ALL. It wants your life. It is YOU who must chose to fight. It will, I promise, knock you down. But don’t you dare let it knock you out! There is nobody Mr. Lewis that is going to go as hard for you as YOU. It’s like a boxing match. You will take hits. And when you go “back to the corner to rest” know that that is also fighting. Yes, resting is part of the fight. Just know there are so many in your corner on this same journey. On bahalf of my team leaders and members, we wish you the best as we are sorry to say that no, “you don’t get better”. You just learn to get better at living with it and finding a quality of life. Xx
Gina Marie -Meniere’s Without Borders Administrator
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