50 years ago today, neither parent nor Kaye munchkins had any idea that in a couple of days, we would be setting up an assembly line in the downstairs kitchen in the former boarding house that became our summer home in Liberty, New York. Styrofoam cup, Sanka packet, creamer, napkin, I don’t remember the other items. The Red Cross had contacted area residents to empty cabinets and give whatever they could so the hundreds of thousands of stuck and stranded people attending Woodstock would have access to, at the very least, basics. That was our small part.

I wrote most of this in 2016 for a Lyme support group. Happened upon it this evening. It still resonates. Likely will forever.

This evening, I’m reflecting back to the early ’90s. I don’t like to visit it often. It is when I acquired Lyme Disease. And…Am back there….

An image of my friend Beth Ann yelling at a girl that I am sick, not drunk, and to get out of our way.

An image of my youngest sister not leaving me, even though she has a plane to catch, later telling me she wasn’t leaving because my feet were blue and she wanted to make sure I didn’t look down and see that, and wouldn’t leave till Mom was home…

An image of a sister visiting from Los Angeles, asking me why I am not in the hospital. Next day, telling my doctor she said that. A day or two after that, being admitted.

Needles.
Tests.
More tests.

Hashimoto’s Thyroiditis. Hypothyroidism. Neither of which would have been causing the symptoms, but lifelong treatment for those began…

Three -oscopies in as many months…most every test of every kind showing something a little bit off, but nothing integral. Lots of incidentals….

And then I go forward two years, phoning a sister at work, saying my temperature is 95 something and I am cold. She leaves work to take me to the emergency room, where I had been within the last week. The Attending so arrogant, I wrote a letter to the hospital advising that, “We all make mistakes, but rudeness is a choice.” My gallbladder was removed the next day.

He was not the first of dismissive doctors…

The odyssey went on until 2008, when a doctor finally ordered a Western Blot.

Then, the current odyssey began.

I hope we with Lyme are cogs. I hope our partial stories somehow serve. I hope that, now that Lyme is one of the Flavors-of-the-Month on the disease menu, no one will feel as alone and scared as I felt; that no one will lose their friends, closeness to and with family, employment and future employability, social life. I hope that losing control over one’s body will be the “tell” – that treatment will arrive sooner and that no doctor will ever make a patient suffer because they either did not see, or did not have, an expletive rash somewhere on their body.

Finally, I hope that whatever symptoms we each experience from this one-size-does-not-fit-all disease, this mapless strain of strain, do not take away our respective abilities to have a quality of life, regardless of what cards we are dealt.

Am thinking of each of you, none of whom I have met, and with only my version of hope, am sending out thoughts of imminent healing to your entire being. Pollyanna is channeling through me. She does that from time to time.

From
SEED VIGILANTES
A CATHARSIS THROUGH HAIKU
DECADES POST-ASSAULT – J. Ruth Kaye

We were a scene from the Keystone Kops
As we fumbled our way
Into the Vet’s office,
One dog pulling in one direction,
Two pulling in the opposite.

They barked and cried.
I tripped, moaned, and
Humans looked on, nodding.

After they settled,
The Dog Owners’ Schmooze began.

Chit-chat, as Scooby shrugged out of his collar
And hid under the bench.
Chit-chat, as I backed away from
The enormous brown Newfoundland duo.
Chit-chat, as the Yorkie happily exited.
Chit-chat, as the Pomeranian
Circled and circled and circled in his anxiety dance.

Far off, the sad couple petting their Pug looked up,
Made eye contact.
I wandered over, inhaling grief on my approach.

“She is old,” the woman said, tissue clutched.
“She is deaf and blind,” said the man.
“She is beautiful,” I said,
As the doctor came out into the waiting room,
Motioning them into Exam Room #1.

Only the man and the Pug exited.
“She’s thirteen,” the woman said, resigned.
“She really is beautiful,” I repeated.

Chit-chat, they moved to the area
To be closer to their children.
Chit-chat, mountain living is challenging.
Chit-chat, distract me while one of my best friends dies
Is what I heard, though was not what she said.

The woman did not circle and circle and circle
In an anxiety dance.
I did not back away.
I sat within eye-contact distance,
Inhaling grief,
When another doctor came out into the waiting room,
Motioning to the Keystone Kops.

Yesterday, I inhaled grief
And, after they sniffed it,
Escorted our dogs into Exam Room #2.

 

I have found the perk of middle agedom!
Appointment with a doctor I’d never seen – his office person taking information, said, “You’re retired?” I said, “That’s a lovely way of putting it.”
Beats ill-functional; disabled; Lyme-racked.
Who knew that LOOKING old enough to be retired would soothe my soul!?

It never occurred to me
That your exit would be voluntary,
That you would leave
Without kicking and screaming.

That you would have thought,
“Yes, I’ve done all I can,”
Or worse,
“Yes, Pain. You’ve won.”

There is some awareness of surroundings on a subconscious level – else, would we not jump every time the phone rings? Would we not roll out of bed every night?

What a shame that, as my memory fades, every stupid thing I ever said not only remains  verbatim, but with visuals of who was present when the words were said. At least I am not like a dear friend who remembers her life events by what she was wearing at the time…

I find consolation in that, having been an atrocious dresser.

The sick girl went to the Women’s Health Conference because who doesn’t love irony? Laughter is the best medicine for some – making THEM laugh is the best medicine for ME. I did so and it felt great. Good to be away, great to be back. Now, where did I put that good night’s sleep?

My favorite postmaster was working today, and as I opened my mailbox, I found a yellow ticket, indicating that a package had arrived.

“What is it! What is it?” I asked.

“A cheese wheel,” she responded from behind the mailboxes.

“A cheese wheel?” I repeated, as the postmaster came forward with my package which, in fact, did look like a cheese wheel.

I opened it in front of her. In the package were the rolls of priority mail stickers I had ordered.

“No one loves me enough to send me a cheese wheel,” I said.

Exit, stage left.

I wasn’t diagnosed for 14 years. I live a Jekyll and Hyde existence – one of sometimes functioning in a passable fashion – other times, incapable of finishing a sentence. If you are lucky, you only see me when my brain is firing or my body is following commands. On great days, I replace the “or” in the previous sentence with an “and”.

Am tired of people saying, “But you look well!” and having to respond, “Well, I can’t help that.” I am tired, period, but I love the life gig. It is more exhausting for those around me who have to see the malfunctions, incapable of doing anything to heal that which has invaded and destroyed.

When I am functional, I do so with a vengeance and go like a bat out of hell, not knowing when my next gift of a brain and body concert will be.