I’m not going to lie. That 👆 sounds like a very messed up porn.
Which is why I don’t feel a lot of people could do an EMG test. Because if you’re not “good with” needles, or have an issue with claustrophobia or with being electrocuted, or being essentially naked on a bed in the company of a group of men who are filling the entire space of the tiny room with their bodies…
this could be a very traumatic test for you.
Not to mention the test is to establish whether your body is failing aka you already have ALS which would make the EMG diagnostic and not just a benchmark.
So there was the potential I could have walked down the hospital skywalk trying to process how I had just been diagnosed with ALS.
And, honestly, if you’re not somewhat on top of your game, just finding the fucking clinic should be considered a cognitive achievement.
But I’m getting ahead of myself.
An electromyography (EMG) is a diagnostic procedure that evaluates the health condition of muscles and the nerve cells (motor neurons) that control them… so they listen to the signals these nerves send out.
So I did the EMG Monday afternoon to determine whether my muscles were making the right noises.
Now, as an epileptic, I’m used to seeing the electrical waves which our brains transmit on screens.
But I’ve never heard the electricity… and I also had no idea that our muscles/motor neurons make a sound when they’re being used.
And not just any sound… no, our muscles sound just like radio static.
It’s like we are walking, talking transistor radios.
That is so cool.
Right. So that’s the test. They shock you and then stick needles in you and see if you’re making the right noise.
But before any of that happened the tech questioned whether I was dead.
When this happened, I know these were my people.
I generally run very cold. My hands are often blue. Even when I’m feeling fine, I’m very cold to touch.
So the tech first had to warm me.
And how he did this was… he stuck my hands and feet into warm water.
So, as more doctors filed into the room, there I was, in my gown with the back open, sitting there.
And then the only person I knew walked through the doorway – my “no lie!” neurologist – and, happy to see him because I already knew his sense of humor, I called out:
He misheard me and responded, “Yes, I know you’re good.” As in… you’re in good hands.
And so I corrected him by saying, “No, I’m dead.”
He still didn’t hear me (neurologist) and responded, “We used to have to use barrels (to hold hot water into which a patient would put their hands and feet instead of the awkward double sink)!”
In any case, since this is a rather elaborate test and there were so many people in this cramped room, I felt how celebrities must often feel because the nice tech kind of just did everything for me so I wouldn’t mess anything up.
When it was time for my hands and feet to come out of the water, he laid a towel-pathway on the floor to the bed.
And then he got down on his knees and gently dried my feet, legs and hands with towels.
And then he helped me to the bed as if I was very old and fragile and couldn’t do it on my own.
I don’t get out of the house much and I really don’t interact physically with many people so this was all quite a trip.
And then the tech wrapped me in dry towels and blankets and heating pads.
It was like I had died.
If I was about to suffer, at least it was a comfortable prelude.
“This is as close to a spa experience that I’ve had in a very long time,” I said to my small audience.
And then my doctor left and I was back with the tech and the two other doctors but only one of the two doctors was administering the test.
PART ONE: ELECTRODES
The nice young doctor started to place — one by one — electrodes on my hands and arms and then he electrocuted me.
And… it was weird to feel my body hosting an electrical charge and to be conscious for it. I was a little worried I’d spaz out because my epilepsy is a jealous beast.
But I didn’t spaz out and my upper body was very responsive to the charge. In fact, I was jumping all over the bed.
Like a hyperactive ninja.
But, when the doctor moved the electrodes down to my legs and feet… there was less activity.
This caused him to frown and stop telling me about how his mom felt Harry Potter was evil and grew quiet and preoccupied and…
…and I started to freak out on the inside.
Oh no oh no oh no oh no… my lower half doesn’t work.
Then the doctor took out a tape-measure and measured my legs as if I was furniture.
Afterwards, he looked up and asked how tall I was.
When I responded and said “5’10”, he laughed and said, “Oh! Then you’re perfectly normal!”
Since no one has every said that to me, it was a shocker but I appreciated it.
Apparently, the taller you are, the weaker the current… it’s just too far for the brain to reach.
So when I’m having a tonic-clonic/grand mal seizure, this is why my upper body flails around like a rag doll in a dog’s mouth but my lower body is relatively still.
Brains are lazy.
PART TWO: NEEDLES
Since I had done so well with the electrodes, the doctor said he was going to use the thinnest needle he had for the poking of my muscles.
I then realized that, if your body didn’t react well, they would probably use thicker needles and it would suck so much worse.
For me, the needle didn’t hurt at all. And I liked how the doctor would say “Poke!” just before he inserted the needle.
And this is when I heard the amazing sound of my body’s radio static. When I would flex my muscles, they would create an almost overpowering, thunderous sound.
I felt so powerful.
But, while I was flexing so hard the sound was GIGANTIC, the doctor had to genuinely yell — I was so powerful and loud — to flex less.
And then the sound would lengthen and become more like the volume and sound one hears when scanning radio channels.
I learned how to, in a way, play my muscles as if they were a musical instrument.
Over and over, he poked me and I flexed my muscles just right, listening to the sound.
My neurologist came and went but he returned for the noise and, to see him sit there with his eyes closed, listening to the sounds being transmitted by my body, like a trained musician,
it was a new experience for me and I liked it.
The needles went into my neck, groin, face, thighs, legs, ankles, arms, calves, hands, feet…
one by one, and it didn’t hurt but it was surreal and I again doubted a traumatized individual’s ability to sustain this.
Credit to the attentive and likely trauma-informed doctors for making me feel safe because, otherwise, those couple hours could have been very uncomfortable.
The doctors even got chatty and so, when I told them about how a neurologist had told me I’d die in my sleep soon after analyzing my EEG because he felt I was constantly experiencing seizures, both of the doctors in the room looked up and they both excitedly said, in unison:
The doctor administering the test turned to me and said, “You were status.”
Then he looked at his colleague and said, “Status electricity is so crazy to see. Now I’m used to it but it’s really something.”
I don’t know what they were talking about because I thought status seizures are the kind of tonic-clonic/grand mal seizures which don’t… stop… without medical intervention aka drugs… and I didn’t have any medical intervention the one time I had a status seizure…
…soooooooooooo… uh, okay.
Status brain electricity.
By the end, I kind of weirdly felt I shared something with these strangers but they poke needles into and electrocute people all of the time so I’m sure it was just another test to them.
When exiting the room, I waved goodbye to the doctor who had administered the EMG and who was now standing in a narrow hallway across from my room.
Since I so rarely interact with people these days, I gathered up all he probably half-consciously told me and compiled a nice little profile which I’ll keep in my brain bank for an unknown period of time.
I could make a New Person playing card for each of the four doctors because you spend that much time packed in a room with people you learn things about those people.
Yet, I’m also aware that paying attention to people’s details and then writing them down could be seen as a very odd and even threatening practice. At the same time, it seems a waste to get an idea about people and then just walk away. I will never know if Dr. Shampoo strategized a way to get Allan the EMG tech to come with him to his next hospital.
In any case, as I walked out of the room to leave, Dr. Shampoo looked up at me but, since he hadn’t yet seen me standing up with my hair down, I wondered if he even know who I was as he just stared.
In my mind:
Conclusion: Dead Girl Walking
I passed the EMG.
That’s awesome but it only means now they have a benchmark.
So, if I start exhibiting symptoms (a change in my voice, being out of breath more often and other really subtle things), I’ll have to do another EMG so they can compare the results to determine whether my music is dying.
But at least I haven’t been diagnosed with ALS... yet.
Now I have to schedule a day long clinical test that tests my cognitive ability so they can also establish that benchmark or diagnose me with FTD and/or ALS.
I’m working up the confidence/will/ambivalence to schedule that.
Because, if it’s for an entire day, then are there snacks or what exactly do we do about lunch.
In the meantime, this Thursday I have an interview to be a librarian in a small Wisconsin town and that’s kind of fun because it will simply be nice to get out and go inside a library instead of a hospital.
Because stasis is bad
and change is good.
Happy St. Patrick’s Day, everyone! This very unlucky 25% Irish Protestant girl wishes you a very happy/safe/healthy week. 💚
Hold on… spring is imminent.