Real. Raw. Heartfelt.
Dear Meniere's Letters & Art
A global Meniere's project by people living with Meniere's disease.
An insightful and revealing collection of letters and art about the journey of people living with M ni re's disease. Take a look inside and see why it is the most livable disease that no doctor wants, and why many celebrities and people are unable to continue in their careers.
Collated by Julieann Wallace, Anne Elias, Heather Davies and Steven Schwier.
Proceeds donated to M ni re's disease research.
You f@&$ing suck
Dear M ni re's,
I wish I could stand at the ends of the earth, where the winds blow swiftest, and feel the gentle sway caused by the blowing, not by my lack of balance, and have the winds blow away the tinnitus and the brain fog. To have, for just one moment again in time, the silence of sound. The clarity of mind. To feel energised by life and not drained by it. I imagine standing on a windswept shore. The noise I hear is the rustle of seagrass, the blowing of the southerly wind, the heave and heft of the ocean. Sea salt and sand pepper my skin. The incessant ring in my ears is quiet, drowned out by the oceans song or swept away, I neither know nor care, I cannot hear it. The salty air fills my lungs, its brusqueness blows away the ever present fog in my brain. Thoughts, swirling vaguely in my brain, come to the forefront. They take shape, as clear and sharp as the broken shells beneath my feet. I'm not moving through a miasma, I'm as clear as the sun shining through the water that rolls onto the sand and back out again. Each deep breath clears more fog from my head and returns more of me to myself, as if the real me lives out there in the ocean, waiting to be breathed in on the winds.
I miss who I was.
M ni re's disease since 1998
Dear Meniere's Disease,
Because of you ...
Last year my neighbour asked my girlfriend if we had separated because he hadn't seen me for months. That hurt.
Last year I couldn't make the fl ight that enabled me to say a proper goodbye to my dying Gran. That hurt.
Last year you took away my creative soul, and most of my hobbies until I could just stare at nothing but four walls 24/7. That hurt.
Last year I counted to 73. Th at was the amount of times I was well enough to leave my door. That hurt.
Last year my girlfriend spent time in a hospital bed and I couldn't visit and be by her side. That hurt.
Last year I had to learn how to walk properly again as I'd been stuck in bed for so long. That hurt.
Last year my mental health made me believe I was a worthless waste of space to myself and those around me. That hurt.
Last year so many times I was ready to give up, and leave behind my gift of life and those I love. That hurt.
Th is year, I'm trying so hard to take back parts of my life from your grasp, and next year I'll take back a little bit more. Your full control over me is dying away and my inner strength is slowly growing. I hope that REALLY HURTS YOU
Colin (That Monster M ni re's)
Diagnosed in 2019