My Vestibular Story



It was a hot late-May morning in Tucson, Arizona, 1990. I was visiting in the home of my future in-laws for the first time, with Mark. I jumped into the family pool’s deep end. When I re-surfaced a few seconds later, nothing was the same, and it never would be. There was a loud roar in my right ear, like a train. I couldn’t hear and my head “felt off.”

I wanted to make a good impression so I continued as well as I could, I got changed and went with Mark to a wildlife park. On the return drive, the roar in my head had gotten louder and I had to lay down in the back seat. During the night everything was spinning and i was vomiting. By morning I was in a hospital emergency room with no health insurance. After a week of anti-nausea and anti-vertigo treatment, I boarded a plane back to Austin, Texas. I could barely walk, it was like gliding, my feet unable to find the floor, drugged with transform scopes. I was unsteady, frail.

Symptoms settled down eventually, not perfectly, but enough to keep going. I continued to have the vestibular attacks; I was still deaf with the roaring tinnitus on the right side and a hyper-sensitivity to noise on both sides. Seven years later, after taking a full-time job at a museum art school, the vestibular attacks increased and I was sick more often.

In desperation, I followed the advice of an Otolaryngologist and had surgery, a sub-occipital vestibular nerve section. The vestibular nerve (cranial nerve VIII) was cut on the right to prevent damaged signals from getting to the brain. The surgery was not a success. I was worse; 5 days post-op my face, eye, tongue was paralyzed going down my neck into my right arm. Shingles in the form of Ramsay-Hunt Syndrome. Now the otolaryngologist and surgeon say that they are 98% sure the 1990 attack was viral. Six weeks after surgery, I began vestibular rehabilitation. This is where I met Bridgett Wallace, a PT working for Kendall Stewart, MD, Otolaryngologist, Austin. It was a long “recovery” and my face is now paralyzed on the right. I’m still vestibular with a monster face.

I applied for disability in 1999, but I was denied. Two years later I was diagnosed with endolymphatic hydrops in both ears, a condition causing too much fluid in the inner ear. A new otolaryngologist diagnosed me with bilateral Meniere’s disease in 2002. In 2003 I began a series of gentamicin injections in the right ear. This didn’t help, in fact I got worse from the medication.

I switched my focus to diet, acupuncture, Pilates-based physical therapy and general exercise. It helped. Today I am still prone to severe attacks, unable to move. I used valium under the tongue followed with Phenergan to help ward off the vomiting for many years. Now it just use Phenergan to stop the severe vomiting during an attack. I began taking Betahistine, daily, in August 2016, It helps prevent vestibular migraines. Still, an attack with its residue of vestibular symptoms can last from days to weeks. I no longer see an Otolaryngologist. I can get what I need from my primary care. Specialists have nothing to offer me that is not invasive.

Losing the drive to make art


Beginning in November 2016, after the election results came in, I began losing the drive to create. Not immediately, but slowly, silently, barely noticeable at first. Some artists went right to work, jumping in to make their mark, hoping for monetary returns or making political commentary. Not me.

Oh, I did a painting early in the year and finished another, but ultimately, I slowly shut down. No reading or writing; no sketching or painting. It has evolved into a nothingness, as if being in a constant state of darkness. Oh, I continued my seed collecting and hired a gardener, something I had not done, to landscape my yard. I put creative energy into my front and back yard. But mostly, I was empty.

I took photos. I meditated.

I think about creating constantly. It is like being in a creative hibernation.

I know it only hurts me. I know.

Comments


You write with an honesty that allowed me to experience your journey along with you.  I could really feel your longing and yearning.  It is very brave to share that, since most folks think there is something wrong with us if we feel the pull of some things. Things which we perhaps cannot even name. I could also identify with being overwhelmed with so much beauty.  —Jenifer Pinchinson

Lovely writings.  Very introspective and lyrical. Great job!  —Tom Maddox

I really like it, felt like I was there, felt the emotions too. Keep writing!!!!
— Susan Sternberg

As I read this…I am right there with you, with your emotion…and it made me cry, especially when you talked of freedom..you deserve that !! —Caroline O’Brien

Very good, very touching glimpse of the layers of your feelings about B and the experience of Italy.  I totally understand that paradox since I lived in Italy for 14 years enjoying the awe of the place while at the same time mourning a marriage that was dying.  So bitter sweet are my memories of those days.

Keep going – only respond to your own feelings about your writing, never about someone else’s feelings about it. —Bonnie Peavy