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A Letter of Complaint to Meniere's Disease

I cannot address Meniere’s disease as “Dear.”

I will say instead…

Attention, Meniere’s disease:

On behalf of an incredibly large, silent and invisible crowd of people all over the world who live with the stress, anxiety, pain and confusion you bring to each of us so freely, I’m filing a letter of complaint.

I wish you, Meniere’s Disease, could know how horrible it is to never have a moment’s peace and quiet from the screaming tinnitus we all experience. I long for a quiet time in my life when I’m not overwhelmed with the constant din of rushing traffic or water shooting out of a fire hose or whistles or jet engines. Add in normal daily sounds — like music, conversation — and imagine the confusion I must sort through just to figure out what to say to the person I’m standing next to.

I wish I could hear better above the tinnitus sounds, but you, Meniere’s disease, also have stolen much of my hearing. Take your medicine, you say? Which one? The medicine that makes me sleep and useless or the one that makes me dizzy and useless? No thanks. I choose to live the best life I can, and it has no room for drugging me into oblivion. I prepare for the possibility of deafness by learning to read lips and studying sign language. I research daily for ways to manage my disease; I’ve found head-positioning exercises and some essential oils that seem to help on the bad days. I wont let you beat me down, Meniere’s disease!

You decided that, after 18 years of my surviving your terrible deafness and tinnitus symptoms, you’d return the full gamut of symptoms to me, and…wham! The vertigo started over with a vengeance, taking my independence and freedom of movement. Now, I’m forced to be homebound when the dizziness is severe or cautiously using a walker on days it’s less severe. On days when you forget to show up, I feel like running and singing; I know I must take advantage of the short time you’re away and not making me dizzy. I run errands, and do all I get behind in when you’re fully present. I can never forget you. You constantly scream, “I am here! I am here!” in my ears every minute of every day and night.

You interfere with my normal active life, even stopping me from time to time in the midst of my activities. You’re unpredictable. And, because its hard to explain this disease to anyone, hardly anyone knows you exist in me. It’s even harder to find treatment. I feel like the doctors and nurses think I’m malingering if I do complain or seek help again. Yet, it was doctors and nurses who gave a name to my hearing loss, my tinnitus and my vertigo all those years ago. The symptoms are hidden; there’s no cast or crutch or bandaged wound for a person to see. I’m always in hopes that a cure is coming.

You, Menierre’s disease, offer no visible sign of any malady. Your outward silence laughs loudly and wickedly in my ears. But I  know you’re there constantly, and I know the game you play, trying to wear me down little by little. I have one thing to say…

You, Meniere’s disease, may win some of the battles, but you will not win the war. The cure is close, and awareness is happening more each day. You may take my quiet away, but you can never steal my peace. My peace comes from within, from my faith and from my determination to not let you win.

No thanks! You, Meniere’s disease, are not welcome.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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