Out of network

This morning an acquaintance and I were discussing a medical issue and she suggested, “You should probably go see a geneticist.”

And my brain (being my brain) replied, “No, see, I can’t, because she’s dead.”

And that’s how three years on grief still occasionally kicks you in the teeth.

It turns out there are hundreds, probably thousands, of people who have medical degrees and specialities in genetics who could answer questions about Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS), all of which drift right on the edge of being good explanations for some of the wackier hijinks I’ve gotten into… but none of them are Aunt Ginny.

That specific combination of DNA genes and chromosomes, nature and nurture, experience and reasoning that I identified as Dr. Virginia Proud is not currently available to advise me on matters of heredity. I will have to suffice with some other MD and geneticist who, while not my aunt, can fill in the gaps of my knowledge, and who — I hope — is loved as fiercely and would be missed as long as the geneticist I would prefer.

She’s not really gone. She’s just moved out of network. Some day I pray my insurance will be upgraded, and I’ll see her again.

Two tales

Once upon a time, I wandered too close to the edge and almost fell. People who loved me caught me, dusted me off, and put me back on my feet. The end.

Once upon a time, later, some folks began to nudge me toward the edge, little by little. They didn’t want me to fall per se – but the closer I get to the edge, the better things are for them, so hey as long as I don’t actually fall no harm no foul, right?

Today people who love me — a lot of people who love me a lot more than I can even process — surrounded me, picked me up, and carried me away from the edge. They dusted me off and put me back on my feet.

My legs are a bit wobbly let and that other group with the nudging habits aren’t necessarily rendered harmless. Still, even a day on solid ground means something.

I love you all.

I will do what I can to repay in love and kindness what you’ve given me.

Thank you for watching out for me.

The end.

To fertilize lawn…

Reading the instructions on the lawn fertilizer. Let’s sum up:

  • Do not mow for two days.
  • Apply to dry lawn.
  • Allow 24 hours before mowing again.
  • Make sure the product has been watered in.
  • Do not water for at least 24 hours after the application.

It is spring in Pennsylvania, which is a shorthand way of saying it torrentially rains every 3 days, and in between the grass grows two feet an hour.

I’m pretty confident I can never actually use this product to its specifications unless I move my entire house and property to another state.

I am a bag of meat

I am a bag of meat.

I am a collection of bones and water in a protein and fat based cover.

I keep my true self in my brain box up on top of a ladder of unreliable sensors.

It can’t be extracted.

It can’t be pointed to on a scan.

I’m not confident it really exists.


I spent nine months in a meat incubator

Then eighteen years in meat apprenticeship

To learn how to interpret what my bag of meat tells me

My fingers tell me about hot and cold

My nose identifies honeysuckle pollen

My mouth reports fried chicken.

Piece of cake.

My eyes and ears report the body language of another bag of meat,

Report the sounds and gestures,

Send messages to my brain box using both electrical and chemical signals

Pass the interpretations through a sea of mind-altering hormones and steroids who are busy just running the shop

My grey matter receives all of it

Compares it to past memories, degrading them

Tries to fit it into a framework

Increases or decreases other chemicals as a reaction

And then somehow instantly and interminably I “understand”

Sending new messages from the brain box to other systems to reply


It’s a wonder we get anything done


Every system has cells, every cell has memory.

My thighs remember things.

How to stand

How to run

My fingers remember complicated sequences.

Take away their memories and my brain box’s orders can’t be completed.

Is my true self in my fingers?

I guess so.

I don’t feel like me when I’m re-learning how to something my injured hand forgot.

I host an ecosystem.

Eyebrow mites.

Probiotic bacteria.




Possibly even a parasite or two.

I like to think my true self is independent of my meat farm

But studies of toxoplasmosis say “probably not”


I am in a totally different meat bag than I was seven years ago

Every part of my meat bag is under construction every minute of the day

I am the city that never sleeps

It takes seven years to swap out the oldest parts

So at best I change a little each day

At worst, the meat bag’s intricate systems fight to keep me alive

I prefer the slow change, to be honest


We are all bags of meat.

We are each a collection of bones and water in a protein and fat based cover.

We are all changing ecologies of life

We are all trapped in cells

Trapped by cells









“How are you today?”


Damned if I know.

Let me check with the meat and get back to you.

Historical nightmares are new. 

Things I saw in my dream last night:

  • The remains of a 12th century highway overpass, which was standing over a 12th century cottage, both made of medieval plywood. 
  • An ancient frying pan which was glazed in a salmon pink coating with my great great great great grandfather’s initials (in fancy script) molded into the bottom. 
  • A set of kitchen canisters and salt and pepper grinders made of glass and pewter that stacked around each other like  matryoshka dolls from the 16th century. The far-flung relative of mine who was showing them to us on the family estate wanted to have recreations made so we could have some too. 
  • Scenes from said relative explaining our (totally dreamed up) family history including the doctor who cared for a now-poor family from the aristocracy. 
  • An ancient microscope hooked up to a 15th century touchscreen that allowed said kids to discover and draw extremely small details of natural things, and somehow also the whole town, but with extremely small lines. Sorry Antonie van Leeuwenhoek but we got there first, with better tech. 
  • The beginning of a plague that made people vomit extremely large volumes of something that looked like pepto  bismol 

I am relatively confident that during my next trip to England (whenever that is) my cousin and I will not be able  to locate any of these family heirlooms. 

Standard Transmission

It starts as a purr

then a hum
then a growl
then something deeper than a whine, but just as frantic

And you can feel it coming up
through the bottoms of your feet
the engine vibrating against the soles
the rattle and growl of the pistons meeting explosions
of such great force

three thousand rpm
thirty five hundred
four thousand
faster faster faster
get where you are going

until you’re aware of the vibration
of your pillowy lungs against the
casing that protects them from your
steel ribs and
the whole of your skeleton humming along
with the yowl of the machine
from the top of the steering wheel
to the gearshift cradled in the palm of your hand

Seeing your chance
you change lanes, swing to the right
then slam your left foot into the clutch
all the way to the floor

the machine




expectantly waiting





the engine sighs

you sigh.


you start the car, idling the engine warm and texting a note
“I’m done work, I’m heading home.”

(Apologies to Irving Berlin)

Blisters, blisters,
Never were there such devoted blisters
Covering the surfaces of hands and feet
I only shoveled out the sleet

Popping, peeling
Proving that my nerve endings have feeling

When a certain storm drain clogged up from the plow
I cleared it off and then said ow

My skin is like tissue
It’s got some issues
Blisters from every run
I get dog hair splinters
And in the winter
It wrinkles in wind or sun

Blisters, Blisters
Trying to toughen up
so no more blisters
Many socks have promised to protect
But nothing can

Lord help the blisters
From walks with my brother or sister
And Lord help the blisters
Covering both of my hands

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