How I'm Using Photography to Teach Others About Meniere's Disease
Never thought I would be a photographer, never thought I would have Meniere’s. I should have realized I would someday end up being a photographer; my sister is one, my first cousin is one and my son is beginning to become one; so I guess it was my turn.
My mother has Meniere’s. So, I guess it was bound to come together at some point. My goal in life was to be an art teacher. As I went through college, I was told there were too many art teachers and was directed toward becoming a special education teacher. It was the best of both worlds. I could still do art with my students and teach. It couldn’t be any better.
One day in the spring of 2000, I borrowed my sister’s camera and became instantly hooked through the lens. That same day I started to notice something was not right. It started out feeling like it was the flu coming on. Being a teacher, you are bound to get some type of “bug” along the way. The “bug” turned out to be Meniere’s and it hasn’t left.
It has made a permanent home in both of my ears. I have bilateral Meniere’s. With Meniere’s in both ears, and the trials and errors of medications, I thought I had finally found the right combination of medicine that would allow me to continue my career and my life as I had known it. I figured I would just take these medications, watch my diet and life would be fine. Looking back, I wish it were that easy.
My left ear was the first to have an operation, “the shunt” in the fall of 2002. Two weeks later I was on top of the world; I felt great. I was beginning to wonder how I managed to teach, drive, have a life and take photographs, let alone do laundry before I had this surgery! I was me again! I was me again for three months when my right ear went into full-blown Meniere’s. I was devastated.
After redoing all the testing again, the doctors suggested I should have a vestibular nerve section on my right ear. I was against it. I continued with my regimen of medications. I continued to teach. I continued having vertigo. I continued being in and out of the hospital, and I continued having to be confined to bed for numerous days or up to a week. This was not my life anymore. My life as I had known it would be changed forever.
Changed forever: short for, “You are not allowed to work anymore. Period.” After 25 years of teaching, I had to take early medical retirement. My life as a teacher was over. Over so fast that I never finished the school year, never had a chance to clean out my classroom, never had a chance to say good-bye to the students and staff. Teaching was my whole life besides my family. I still have my family but I thought I had lost teaching. Vertigo had taken over my life so severely that the medications were not helping, and the Vestibular Therapy was making me so sick that I could not recover from the treatment. I was left with no choice but to have the Vestibular Nerve Section.
In December 2005, I had the surgery on my right ear. I am now left with vertigo in my left ear and all the other Meniere’s symptoms, plus the added problem of trying to walk, stand up straight and bend over without losing my balance. Drop attacks (Tumarkin’s) occur without warning, and I fall backward for no apparent reason. So far I have broken my wrist, ended up with a few big goose eggs on my head and bruised all the muscles in my lower back when I fell backward into the stove.
As of January 2007, I am diagnosed with Meniere’s and migraine associated vertigo. Through the internet and other Meniere’s sites, I began to learn I was not alone. There are a lot of people out there just like me. I met someone that would change my life and allow me to teach again and continue with my photography, but now with a purpose.
As of September 2016, my camera sits in its bag. I am no longer able to capture images and use a walker at the same time. My simple point and shoot camera is always at my side, and of course the camera phone. Most of my time now consists of bird-watching through the window, playing fetch with the dogs, and manipulating photographs I have taken to provide visual representations of Meniere’s for others to share. Creating pictorial words of wisdom for the outside world to see into ours – those who struggle with Meniere’s, vertigo and other vestibular disorders.
Photography, Meniere’s and me… we have come a long way. Through the use of the camera, cyberspace and computers, I am still teaching. I am teaching others about life as a person with Meniere’s. I am giving those with Meniere’s a chance to show and explain to their families, their co-workers, their friends and others what it means when we say, “I am dizzy.”
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