Wednesday, July 18, 2018

It's Going to Take A Gutsy Literary Agent And Editor For This Writer

Dear Lit Loves,

Greetings!  Well dear readers I am querying, querying, querying my life away, looking for a better day, and doing everything except attempting a back flip off the roof of my house to obtain literary representation.  Seriously,  it has been a heck of a week in the literary world for this writer. And to top it all off I discovered over the weekend both my ears are infected and the I additionally have the sinus infection from hell which has additionally caused my throat to feel like its on fire.    In the meantime, publishing imprints are shuttering, some new imprints are emerging, and everyone appears to be holding their collective breath to see if Barnes and Noble can indeed keep its doors open.  What happens when this kind of collective fear takes hold of an industry?  The powers that be in that industry begin to think:  Okay, let's stay with the tried and true authors who are bankable and God forbid, do NOT let any new writers/authors even approach the door much less allow them to enter and stride into the lobby of a publishing house. 

And this kind of fear of the "new"in publishing breeds a total shutdown of new voices, varying prose, relatable subject matter becomes overlooked, and all the prospective talent never gets a chance to even get to a starting line with a pen and a damn good, real story.  Hello?  Ring any bells??  Even the small presses appear to be hunkered down and no longer answering the door.  I mean, seriously?  One small press in the last two months has never even bothered to answer emails that I have sent to their sales department and founding publishers.  They say they want the bold, the challenging, and the empowered women writers, but um no, they really do not because well, no one appears to even be commanding the ship.  For crying out loud, get out from behind the damn rock and try discovering the talent that is standing right before you!

And would someone please enlighten me about when there became a rule that editors at big traditional publishing houses or editors at small to mid-sized publishing houses could not connect or consider speaking with or acknowledging potential new writing talent?  Sometimes when friends, acquaintances, or book club members ask me about the publishing process, I feel like saying it's a knock down, drag out, no-holds-barred cage match.  And for those that ask me about potentially seeking publication, I am almost scared the truth of what I am witnessing would cause them to run in the opposite direction screaming.

And furthermore, let me go on the record saying that if you are a published author, particularly in the genre in which I focus my efforts, and I reach out to connect with you via Goodreads, LinkedIn, etc. and you do not even acknowledge me, I will not buy your book and well, when other readers ask me about you as a published author, I am not going to be shy about your lack of a helping hand or ability to be professional and personable.  For heaven's sake, Karin Slaughter's books scare the hell out of me, but she gets props for being supportive and open to those of us who are trying to achieve a tenth of what she has achieved.  So yes, I regularly read Karin Slaughter even though I know I may be scared out of my wits because I have immense respect and admiration for her as she gave me a welcome handshake and not a rebuff and cold shoulder. 

Oh, and let me just say a huge thank you to this new author whose memoir is going to be published in January 2019 called MAID.  Her name is Stephanie Land.  Compatriot, I shall be there rooting for you any and every day of the week as you were a welcoming soul to a struggling writer.   And where are the many others in the publishing world like her??  Which rock are you trying to hide behind, eh??

Till my next post,
Grace
(Amy)

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.

Best,
Amy
(Grace)

Friday, June 29, 2018

Uveitis: Inflammatory Eyes Are Watching You

Dear Lit Loves,

Greetings literature lovies!  Well, I keep rambling about how traditional publishing needs to get with the program when it comes to the memoir genre and start locating some bravery and publishing those of us with patient narratives regarding unusual chronic illnesses.  Truth Be Told:  I think traditional publishing is timid and scared to take on any narrative/memoir author who is NOT a Kardashian or Trumpster so I have decided to just go ahead and relate some of what is inside my memoir manuscript of chronic illness here on my blog.  Until I am able to uncover a literary agent with enough intestinal fortitude to sign a relatively unknown Southern writer, this is the only way I have of getting my story to the world at large and hopefully helping people who may discover that they have the same chronic conditions I have.

So today, let's discuss Uveitis.  Say What?!  Specifically, I have an eye inflammation disorder named Uveitis and so far it has only occurred in my right eye.  My left eye is completely normal.  Stone cold truth.  The part of my eye that has chronic inflammation in the right eye is called the uvea which is the middle layer of the eye between the retina and the sclera (white portion of the eye).  And here's the real fun part:  I never really know when Uveitis is going to decide to become active, but I most definitely know when it is quiet and not creating havoc with my sight.

I first discovered I had Uveitis when I was sixteen years old, sitting in the back of my Geometry class and suddenly I started seeing black squiggly lines, dots, swirls, curlicues, etc. in my line of vision. Plus, my vision became blurry.  So I was able to see an opthalmologist in High Point, NC who had studied at Johns Hopkins.  He was the most laid back yet gifted eye specialist with whom I could have gotten an appointment.  I explained to him what was happening with my vision and even drew a picture for him of all the strange lines, swirls and dots I would occasionally see.  At this point, my right eye had turned red, it ached, the vision was blurry and whenever I went outside my right eye would become watery and I would don a pair of sunglasses.

This eye specialist and surgeon dilated my eyes and inserted numbing eye drops.  Fifteen minutes later he arrives back in the patient room to examine my eyes.  I heard the following, " Uhhh  humm. Okay."  Then he took a look in the left eye and immediately reverted back to analyzing the right eye.  Suddenly he slided backward in his rolling chair, pushed away the eye examination instrument panel, and said, "You have Iritis or what's technically known as Uveitis.  The interesting news is that it only appears to be occurring in the right eye and not the left eye." Then he showed me a picture of the inside of the eye and pointed to the uvea which is the portion of my eye that was inflamed.  He assured me that I was not losing my mind or hallucinating.  He explained that this chronic eye inflammatory disorder is usually first seen in people older than me; however, I should not worry because it was a treatable condition.  Whew.  So the eye specialist started me on an eye drop called Prednisolone Acetate !% whereby I was to place one drop in the right eye four times daily for the next month.  In addition, to soothe the eye he prescribed an eye drop named Atropine whereby I placed one drop of it twice a day in the right eye.  Fortunately, after a month of extensive eye drops my sight was back to normal; however, I could not just stop the eye drops instantly.  Both eye drops were tapered back over several months time.

Now here's the interesting part:  there is no cure for Uveitis.  It flares up when it chooses.  Most of the time, my Uveitis flares when I am stressed, sick, or have just had an eye procedure or if the eye is injured in some way like when I stepped off the school bus at my high school one day and two males were throwing a football back and forth and the football hit me above my right eyebrow. Did I ever mention I did not attend school with some of the brightest people in the world?   Inflammation overload began almost immediately.  Each time the Uveitis condition would become active, I would generally be prescribed the same steroidal and dilating eye drops.  Here's the part that is intriguing:  the eye drops used to treat Uveitis cause development of cataracts and eventually Uveitis also caused me to develop Uveitic Glaucoma in my right eye.  At the age of thirty-two I had surgery to remove a cataract from my right eye and insert a new lens.  At the age of thirty-five I was informed I had developed Uveitic glaucoma whereby fluid would build up in my right eye and not be able to drain adequately resulting in my eye pressure going sky high.  Suddenly, I was experiencing not only seeing the cells of my right eye, but also flashes of light, eye pain, nausea, and stabbing headaches.  At the age of thirty-seven I had what is known as Baerveldt Implant Surgery on the right eye.

Baerveldt Implant Eye Surgery involved the skilled hands and veteran experience of a glaucoma surgeon who inserted a silicone implant in the far right corner of my right eye which allows the excess eye fluid to drain and thus lower my eye pressure.  No.  It was not a simple surgery,  In fact, I had to have four additional surgeries in order for the implant to work at its optimal capacity.  And every ten or more years, Uveitic glaucoma patients generally have to have the silicone implant replaced because scar tissue develops and can block the implant from draining the eye fluid at an optimal capacity.  Oh, and a patient cannot be completely knocked out for the surgery; the patient can only be sedated as you have to follow instructions during the surgery to move your eye up, down, right or left. 

Thus far I have been lucky that my original silicone eye implant has not had to be replaced as I have not developed serious scar tissue.  Recently though, my retina specialist noticed that my retina was swelling and he placed me not only on Prednisolone Acetate 1% for Uveitic inflammation, but also a new eye drop called Ketorolac.  I place both sets of eye drops in the right eye four times daily.  And I pray that this decreases my retina swelling.  So far so good.  I will know for sure how well this new eye drop is working in August when my retina is once again mapped or photographed to determine if the swelling is decreasing.  I have not asked what happens if the eye drops do not decrease the retina swelling because it most likely involves surgery and why stress myself before I know for sure what will happen, right?? 

I guess some of us are just blessed with varying forms of chronic illness that plague us our entire lives.  I did not do anything to cause Uveitis.  It just happened to decide to show up in my right eye when I was sixteen years of age.  I often wonder if I will eventually lose the vision in my right eye as that scares me since I love to read and write and drive my Mustang.  And there is always the lingering thought that Uveitis might suddenly develop in the left eye as well.  Most people who are diagnosed with Uveitis have it in both eyes, but I have been a strange case in that mine has not.   According to The Uveitis Organization more than 2 million people in the world have been diagnosed with Uveitis.  In the United States, Uveitis afflicts 109,000 or more people. 

How do I cope with this strange eye condition?  I make sure that I have both veteran retina and glaucoma specialists at one of the best university medical institutions in the country.  I regularly visit those eye specialists for rechecks of my eyes.  I never just stop any eye drops cold turkey because I know those eye drops must be tapered or bad things can happen.  And I roll with the punches whenever something new occurs like this recent swelling in my retina.  All you can do is all you can do, but all you can do is enough.

Till my next post,
Grace
(Amy)