Thursday, July 5, 2018

Meniere's Disease And Me: A 30 Year Ride On The Merry-Go-Round From Hell

Dear Lit Loves,

Dear book loves, I am diligently attempting to locate a literary agent for my manuscript about discovering empowerment and healthcare advocacy through my experiences juggling four chronic conditions beginning from age sixteen.  One lesson I have quickly learned is that just because a literary agent professes to be hunting for narrative nonfiction that changes lives or makes a difference does not mean that there are not strings attached such as demanding a ginormous platform (aka you are a household name), you have an MFA from Harvard and you've written for esteemed publications, you currently write for The Times, you blog daily and have ten millions followers, etc. etc.  One essential point keeps running through my mind and that is this:  even before social media unknown writers were writing memoir and narrative nonfiction with success.  Not every writer who holds an MFA is able to write a memoir that a good majority of readers can relate to and walk away from having learned something new.  I am losing faith in publishing, particularly traditional and independent (small or medium) presses.  Literary agents are not at the top of my most loved list as many of them do not even bother to respond to a writer's query or book proposal.  It is truly becoming a sad state of affairs. 

To continue my efforts to educate and explain the various chronic illnesses with which I have been blessed or cursed depending on your perspective, I have decided to write about my thirty plus year journey with an inner ear disorder known as Meniere's disease or technically, Endolymphatic Hydrops.  When I was eighteen and skipping joyfully away from my high school locker for the last time as I was more than ready to leave high school in the rear view mirror, I proceeded down a school stairwell and promptly watched my entire surroundings begin rotating.  Not me rotating, but the stairwell, the steps, the walls, the railing, other people, etc.  Grabbing hold of the stairwell railing in an extreme panic as I tried to steady myself, I actually had no choice but to drop and sit on a step as there was no way I could continue walking without falling down two sets of stairs.  I sat on a stairwell step, clutched my backpack and purse, and closed my eyes.  Surely, I had stressed myself to the max and this was my body's way of revolting.  Fellow students were whining about my sudden stop, but they had no idea what I was experiencing.  After sitting for a couple of minutes with my eyes closed and trying deep breathing exercises, I opened my eyes and the rotation I was seeing began slowing and then stopped. 

Little did I know at the time, but that was my first experience with Meniere's disease.  As I proceeded to my freshman year of college, I found myself having these same dizzy experiences while I was driving my 1981 Camaro which landed me in a ditch on a two lane road until the spinning surroundings in my visual field ceased and I could find some help. (We didn't have cell phones back then).  I would be in the middle of a class and the dizziness would commence suddenly.  Naturally, I tended to panic when this occurred thanks to high anxiety and would often try to clutch the sides of my desk until the spinning ceased once again.  Next, I realized that I was beginning to notice the hearing in my left ear would suddenly diminish.  I would occasionally hear shrill buzzing in the left ear and often my left ear would feel like someone had stuffed a water balloon inside it. 

The dizziness only became worse as time progressed.  One afternoon I had just returned home from my college classes for the day when I realized my hearing was off in the left ear, the ear felt full like it was swollen, and I suddenly broke out in a cold sweat with goosebumps.  Oh God, I remember thinking, what the hell is happening now?  All of a sudden as I sat on the couch my surroundings began slowly rotating and then the rotation became faster and faster until I stumbled back to my bed, grabbed a trash can, and proceeded to regurgitate through my mouth and nose.  This definitely had not happened before as I retched for ten hours.  My parents arrived home, became alarmed, and I informed them I thought I had a serious case of the flu and would see a doctor once I survived this hurricane force episode of dizziness.  Ten plus hours later, the room had stopped spinning, I had nothing left in my stomach, found myself to be quite pale and realized I had nose burns from regurgitating so often.  On top of all this, I was extraordinarily weak and profoundly scared witless. 

I called my aunt who worked as a nurse in pediatrics at a local hospital, discussed my symptoms with her, and she referred me to her ear, nose, and throat doctor.  After my appointment with the ENT specialist, I was even more freaked out as he wanted a CT scan completed to rule out a brain tumor?!!  And back in those days, most places including some hospitals did not even have access to a CT scan machine.  So I waited for the mobile CT unit to arrive in the parking lot of the medical village where the ENT specialist was located and kid you not, it was an 18 wheeler decked out with a waiting room, a CT scan machine, and a technician.  This was one of the worst medical experiences of my life essentially because the scan technician had virtually no experience with obtaining a vein from a person who has very little veins and veins that tend to collapse.  It actually took as much time for the technician to obtain one vein in my left arm as it did to perform the CT scan.  I think the guy stuck me six times before getting a vein on the seventh try.  At that time there were no open CT scans, they were all enclosed capsules and I am claustrophobic, but I had experienced so much trauma leading up to the scan I finally just tried to relax, endure the scan and its loud banging noises along with having contrast fluid injected into a vein, and then get the hell out of the truck.  Results?  I had no brain tumor thankfully, but the ENT specialist thought I had an inner ear disorder he had never seen before but had read about called Meniere's disease.  At the time I thought he was full of it, but he insisted I see an otolaryngologist at a university hospital an hour and a half away from his office.  We did not have the internet back then so I had no idea what the ENT specialist was referring to as I could not just go home and google "Meniere's disease". 

So I promptly went home with a copy of my CT scan and medical file from the ENT specialist with a referral to the next specialist I would see at a major university hospital.  That would eventually lead to me and my dad driving to see one of the up and coming medical gurus who had seen and treated patients with Meniere's disease.  And it would also be the beginning of a lifelong need for the best otolaryngologists throughout the course of my life. 

I'll never get all my experiences with Meniere's disease documented in one blog post so until my next uninterrupted period of what I call free-writing, I will close for now.


No comments:

Post a Comment