» On 9/01/2025 12:05:00 AM Mountain Standard Time, Alan wrote:
The Eyes Have It. 

Perfection. The parents want it. The teacher wants it. But the kid's a screwup. Trip to the eye doc. Read the top line. Cover your left eye. Cover your right eye. Which looks better? One or two? Here's your prescription. They're not "Four Eyes," they're glasses. You look like a Brainiac. OK, he'll try to be that, just to spite the jerks. Later, the specs are a pain in the butt. So... radial keratotomy. Scratch the eyeball at ten, two and four with a sharpened paperclip. Olden Days, before Lasik. Removed restriction from the drivers license. Perfection. Much later, cataracts. Get the "Cadillac of implants": three focal planes. Pirate patches. Arrgh. Perfection. Afterwards, seeing double. Droopy eye. Third nerve palsy? Slurring. TIAs, mini-strokes? MRI, MRA, CT, blood, urine, EEG, EKG, X-rays, cerebral angiogram (roto-rooter, up through the crotch). Allopath, osteopath, homeopath, acupuncturist, hypnotherapist, neurologist, neurosurgeon. Double vision, depth perception, peripheral vision, balance: staggering, lurching and stumbling like a drunken sailor. A friend says the "Special K" pill at a rave cleared up his double sight. Got prescription for ketamine therapy. Aimed for the K-hole. Nothing. Hands cold, always exhausted, face doesn't work. Exacerbations are terrifying. Finally, after three years, a neuro reluctantly gives the Myasthenia Gravis diagnosis. Expensive treatments. They never tell you retirement will cost this much, when the shysters are stealing from your paycheck. IRA, my foot. And Medicare ain't free, especially when you get past the "A" part of the alphabet soup. Is it worth investing even more money to keep fixing up this worn-out wreck of a body? But then "Bette Davis Eyes" pops up on the ol' YouTube, and he can't help himself... with sincere apologies to Kim Carnes [1981 video below]:

Her hair is greasy gold
Her lips, a snarled surprise
Her hands are always cold
She's got Myasthenia eyes
She'll turn her gaze upon you
And she'll see you like twice
She's pure as Jersey snow
She got Myasthenia eyes
And she'll squeeze you, she'll appease you
All the better just to freeze you
She's atrocious and she knows just what it
Takes for diagnosis
She got a neuro doc's weary sighs, she's got Myasthenia eyes
She staggered to your home
'Coz of her droopy lids
She hogged the La-Z-Boy
She got Myasthenia eyes
She slurred her pickup patter
Nudged you like you were lice
Until her snores began
She got Myasthenia eyes
She exposed you, when she froze you
Exacerbated the crumbs she throws you
She's ferocious and she knows just what it
Takes to spark prognosis
All the boys think she's so fly, she's got Myasthenia eyes

Other versions of Bette Davis Eyes:
1974 Jackie DeShannon (1982 Grammy, 24th)
2000 Gwyneth Paltrow
2011 Taylor Swift
2022 Where The Waters Meet (Megan O'Neill & Paul Kenny)
2024 Ethel Cain
2025 JoJo Siwa

Myasthenia Gravis Playlist:
1978 Double Vision Foreigner
1980 Crosseyed And Painless Talking Heads
1989 Hold Your Head Up Uriah Heep
1958 (Hang Down Your Head) Tom Dooley The Kingston Trio
1963 Walk Like A Man Frankie Valli & The Four Seasons

2025Aug12: tennis legend Monica Seles...

2025Oct9: Oh geez, they really butchered it...

Labels: me, mg

 
» On 9/01/2025 12:01:00 AM Mountain Standard Time, Alan wrote:
Invisible Incurable Disease. 

Myasthenia Gravis (MG) is a rare autoimmune neuromuscular disorder that causes weakness in the voluntary muscles, often impacting those I rely on for everyday activities, like breathing, blinking, swallowing, and moving my arms and legs. In MG, antibodies mistakenly attack the receptors on muscles, preventing essential signals from reaching them and causing significant fatigue and muscle weakness. MG is an incurable illness that limits physical strength in unpredictable ways, but many symptoms are not always visible.

Perhaps the most destructive thing we can ever be told when battling a chronic illness are these simple words; "we have medicine for this and most people lead a nearly normal life, don't worry!"

They are words a patient never forgets, forever etched deeply into the subconscious grooves of their mind and heart, words that will negatively shape their newly forming identities, relationships and so much more.

You see, there is a natural instinct as a human being to protect and insulate against brokenness, to fashion a safety net, spun against our own fragility, ensuring our protection from the rejection and slander of others. There is a deeply penetrating need to hide away our flaws from those around us.

Just as this instinct thrives in our daily subconscious in all other matters, it reaches new heights for those with chronic illness.

During the formative first few months that our identities as patients are being shaped, the reverberating echo from doctors that we can, and indeed should, be able to achieve normalcy as prescribed by those who are not impacted by illness and when we cannot, there is an innate sense of shame.
--Rebekah @ facebook.com/share/p/1GJ1b8q9R4

The neurologist treating my MG has administered a Myasthenia Gravis assessment. I scored 10 on the MG-ADL, which he said was not great. He has also prescribed medicines that have horrific side effects, like unpredictable explosive diarrhea. But I was already wearing Depends for urinary tract issues after a botched prostate operation, so now the diapers do double duty, covering all bases. Lucky me. 😉
#acbmg on facebook

Labels: mg