MS Horror Story

I hope everyone had a Happy Halloween! 🎃 👻

I very much enjoyed mine, my daughter rode her bicycle without training wheels for the first time! We had dinner and a movie, The Wizard of Oz. My daughter dressed as a Hulder Maiden from d’Aulaires’ Book of Trolls. (As always click any blue text in this post to be taken to a website with more information. )

A Hulder Maiden and A Ghost asking Death (Nana) for Candy

My four year old son is still enamored with ghosts, as he was last year. (He sleeps with a stuffed “ghosty” every night. )

My last blog post I had promised a scary story. I wanted to share it here with you this week. It is still the Day of the Dead, and All Hallow’s Day after all. Thank you so much Dan and Jennifer Diggman, Kari and Julie for coming to the zoom party last night and giving me a change to read it, and put it out there. Thank you for everyone who has given me encouragement in this story, and my writing. Thanks to my family for helping me pull it off, and my kid’s for letting their Grandparents out them to bed on Halloween. 🙂

CAUTION: The following story is a work of fiction, based on real life situations. It involves tight spaces, and another description that may make individuals with claustrophobia, Trypanophobia, or those with anxiety around the process of the MRI, this story may not be for you. This story is meant to be a scary story, but it is meant in a lighthearted tone, and to spread awareness of the anxieties we face with MS.

The Drawl

“Relax, lie still.”  I feel my fingers brush the textured plastic of the MRI platform.

“Would you like to listen to any music?”

I start at the question.  Fifteen years of MRIs, and I’ve never been asked if I would like to listen to music.  I’ve read mention of the possibility of music, to soothe the awkwardness of the MRI, but no facility had actually had the metal free headphones that made it possible.

“Sure”, I look at my Mri Technician’s name badge.  “Yes Daryl, I would like that very much,” I smile. 

Daryl brings me foam ear plugs, and the padded headphones.  He returns this time, but now he has a Hannibal Lecter style cage. He is going to lock over my head.  It’s designed to keep my head still so that the images of those lesions in my brain are  crisp and clear as possible.  I wonder to myself if there are any new ones?  Probably not, my current B cell modulator treatment seems to be working.  

After I hear the clamp of the cage Daryl slips a bulbous call button in my hand.  It feels like a blood pressure pump, round, fits snuggly.  My hands don’t have to work to hold it, I can let the object rest and it will be there just in case.  

” This first set of images will take about 20 minutes, then we will pull you out to inject the contrast dye.”  

They had secured an IV earlier, piercing my skin with that “little pinch here.”  I’m amazed that I still feel that quickening of pulse before the puncture.  I’ve lost count, or haven’t kept it, all the times I receive an IV or a blood draw over the last 10 years.  Well, I guess it never gets old.

I feel the platform roll me underneath the that lovely hospital blanket..  Daryl comes on the intercom, this first set of images will take about 7 minutes.   Try not to move.

It is crazy how this always triggers the irresistible urge to swallow.  I can’t move, they are taking images of my spinal column, or wait was in my brain first?  Play it safe and don’t swallow; don’t swallow.  Muscles contract into a swallow.  No one’s ever mentioned my involuntary swallowing ruining an image.  I guess I’m not penalized for normal, human subconscious movement.  

I concentrate on my breathing.   There is nothing to do in this tube.  It feels like sensory deprivation pool in which thoughts wander and float, but instead of being surrounded by water I am encircled in a device to roll a Tesla 3 MRI around my brain and spine.  BEEP BEEP BEEP GRRRRIIINNNNN SHEEESS VMMMM VVMMM VMMM

My favorite part of an MRI is the end, when the whole MRI machine verbhriates with sound, vibrating my skin, my insides, the magnet taking over.  

The sound and reverberating stops.  Ok Elizabeth, you’ve done a really great job.  We are going to pull you out and inject the dye.  “The platform starts to move, my hands feel the gentle glide of that textured plastic beneath them, soon the world will again be around me.  A break between the magnets. 

 Abruptly the motion stops.  Maybe they needed more images.  I wait, awaiting the voice, my connection to the world.  A few more moments…

I press the tubular thing they gave me to communicate. What is it called?  Brain fog is something fierce when you’re trying to describe an object your not all that familiar with.  

 There’s no response.  

Thoughts flash through beneath my closed lids.  I don’t like to open my eyes during an MRI.  I find myself afraid I’ll develop claustrophobia.  The only time I ever felt claustrophobic was when my boyfriend used to trap me under the covers and hold me there.  How did I get a boyfriend that likes to tease like my older brothers?  What would Freud have to say about that?

Thoughts, back to thoughts, I am present.  I still don’t hear anything?  Why?  I am still in that resonant state of mind that comes from being a patient in patient’s garb.  The loose robes that steal your identity of who you were before you entered their world.  This uniform doesn’t fit well, no one likes it. Moments before those ties were slipping though my fingers.  The unconscious movements that come with tying the bunny ears of a bow.  MS hasn’t taken everything away from me.

Now it’s time to just speak up.  I break the silence.  “Hello?” 

 Silence.

“Hello, I think something happened to the platform…”  “Hello????”

Where is everyone?  This isn’t supposed to happen.  Someone is always on the other end.  This is a hospital.  Where is everyone?   Did something happen?  They wouldn’t forget me…

Suddenly I hear the crack  of the intercom and a voice comes on the other side.  It’s not Daryl’s voice.  I hear a long, low draw of breath… then an inhuman growl, movement, a drawl, like a settling of flesh and space, and an oozing of gas and movement from out organic material,  like a pile of leaves crumbling in upon itself.  

This isn’t right.  Something is wrong.  What do I do?  No one is there?  No one I want to meet is on the other end?  What is on the other end…  

I am held into place by my IV, and the cage above my shoulders, securing my head and neck into place.   I move my right arm first, and try to feel for the unlock mechanism to release the cage.  I can feel it, I can grasp it, but I cannot turn it.  My dexterity isn’t my strong suit.  My fingers are partially numb and I tested poorly at my occupational therapist office when it came to my pincher grasp.  Ironically my right hand’s grasp is weaker, and my left, stronger.  Since I can remember, I open cans with my left, though I am right handed.  Ironically, or coincidentally, my better veins are also in my left arm, where my IV is inserted.  I’m going to have to pull it out.  I always feel a little squeamish at this part too, because I’ve had the IV hurt when a nurse wasn’t careful enough.  It usually stings a little, then there is the relief of not having something in my arm anymore.   

Blood drains from my face as I realize I’m going to have to take out the IV.  I can use my hospital gown to give pressure after I remove it.   I can do it.  I feel the rubber tubing, I feel the encasement of the syringe.  I breath in, my hand freezes.  I try again, breathe in, tug and feel the release of metal from my body.  I press with my gown.  It wasn’t that bad….

What is going on????  I rest for about five frenzied and dizzy moments clutching my arm with the slightly blood stained gown. I lift my arm carefully.  I feel my fingers and the grip, I grab and turn.  Theres a click.  It released.  I move carefully, this is such a small place, but I still don’t want to open my eyes.

As I slowly move the cage, trying to not catch it on the walls of the MRI, the backs of my fingers brush the textured plastic, and my chin catches on the bottom of my chin.  I will have to lift it.  I ease it over my chin, the same brushed plastic, catches my chin.  I do The MS Gym’s patented sexy double chin, trying to bring my chin as close to my neck as possible.  The mask scrapes  my skin slightly with the raised seam of the plastic, but I am clear.  

I shimmy, moving my body slightly left and right as I catch the textured basket and ease myself out of this.  Maybe I should take up spelunking after this.  Why am I still telling myself jokes?  I strive to bring myself out of that passive MRI mentality.  This is serious.  Something that sounds inhuman is in the same room of my MRI scans. 

Before the MRI I took a balanced CBD/THC edible.  It gives me some assurance that I won’t have leg spasms or spasticity during the MRI.  So the world seems odd, and this doesn’t at all seem real.

I try to peer beyond that dark glass.  I see no one in behind it, and no thing.  

I find my cane against the wall.  I don’t always need it, but today was one of those bad days where I forgot how to walk for a little bit.  It will come back, it always does.  No MS specialist or Neurologist has ever been able to tell me why my walking problems are intermittent.  They are starting to recognize, after enough of us voiced our intermittent problems.  But still, its misunderstood and I have had to come to accept that it’s not just me doing something wrong.  In fact, I’ve always thought it is me doing something right, my brain working around the lesion firing signals and detours to avoid the damage and rerouting, taking a different path to make my legs work, help me remember.

I’m disoriented? What just happened?  Did I just claw my way out of an MRI tube?  

I’m fatigued, I’m stumbling I look around the dimly lit room as the lights flash and flicker.  What the fuck?  Seriously?  This is a hospital!  Why are the lights flickering?  

My cane is next to the gurney against the wall.  I grab it from where it leans upon a blue cushioned surface on a frame attached to wheels.  I’m so tired from crawling out of that confined space.  How far will I be able to get? I envision myself using the gurney as a boat to navigate through the flickering hallways, using my cane as an oar to push me along each side.  Hmm, that might be more tiring?  

What are my options?  Using a wheelchair will just fatigue my arms.  What I need to find is a rollator, but all hospitals have is those old school walkers with wheels on the front, golf balls on the back.  It may be my best option at this point. 

I quietly open the door, saying hello.  The hall looks limitless in its length.  Doors leading to unknown rooms.  Things or people are in those unknown rooms.  Agggghhhhh! This is too much! Its a dream! I can’ process this!  Just focus.  All I need to do is get outside, find an uber and get home!!! 

I say softly to the hall… “Is anybody out there????”

Unexpectedly I hear a small, low voice.  “I am…”

Its my MRI technician, Daryl.   He’s tall, reassuring.  He gave me earphones, earplugs and a sheet to keep me warm at the beginning of it.  I could cry and hug his tall comforting frame.  “That wasn’t him, the sound I heard in MRI chamber!”

“What is going on?”

“I’m not quite sure.  I took a break and my associate went in to monitor the images.  Then the hospital went on auto lock down.  Its a protocol incase of a terrorist attack or a shooter.  We have to be very cautious.  I don’t know what is going on, but we are in danger.”

“At this point he notices my stumble and asks if I am ok?”

For a moment I’m outside of my body and looking at myself in this vulnerable position, hospital gown, socks, cane. 

“I think I’d like to go get my shoes, my clothes…”

He puts his hand on my arm.  “It’s ok, we are going to figure this out and get you out of here, safely.” 

He offers me his arm and he’s the same height as my father, though about 10 years younger.  Still it feels familiar as I steady myself on his arm.  We go to dressing room and he tells me he’ll wait outside. 

Inside the small room I exhale and feel safe.  Funny how a little more space makes me feel safer, but not limitless space as the hall.  Not confined space like that MRI tube.  I shiver as I remember the drawl that I heard.  Like static from a radio, saliva laden breath.  Menacing, dead sounding, and wrong. 

I take off one robe and put it in the laundry basket, operating the foot mechanism to open it, a small crank, not even a peddle.  I wrap my socked foot around it and push hard.  They didn’t really make this so disabled friendly. 

It takes about five minutes for me to get dressed.  My MRI tech asked me if I’m ok, I say “I”m fine.” Singly, the way you do when nothing is ok, but it’s easier to just say “I am fine.” 

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