♤
Two days before I left my job at the high school working with intensive needs students I had an episode around noon and forgot how to tell time.
It had been three weeks since my terminal diagnosis - Compensated Cirrhosis, stage 4/4. Liver is dead but the body is an engine and it'll work around a faulty filter until the toxins shut it down.
Terminal, but you're dying the long way around.
♤
I was sitting at my desk with my back to the classroom, staring at the clock on my phone when the signals in my brain glitched:
ii:AT
ii:at is not a time.
where is the time.
blink.blink.
ii:AT
this is ridiculous. what time.
what TIME.
ii:AB
I hunched at my desk, panic-stricken, hoping the students wouldn't noticed my distress.
Time dilated.
is:OS
please.. please stop.
is:OS
WHAT THE FUCK
12:03
The numbers stopped waxing alphabetical and I seized the momentary clarity to text our teacher.
Could you take me to see Nurse Kathy? I don't want to concern anyone.
♤
From the classroom to the hallway to the satellite nurses office. Nurse Kathy worked with the medically fragile and intensive needs students, less traffic and less gossip than the main nurse's station.
"Do we need to call an ambulance?"
The rent a cop entered the way cops do, out of fucking nowhere, next to my supervisor and the head teacher and the librarian who was passing by and saw me stumble against the wall.
"NO. No. Not an ambulance. My daughter. Please?"
The cop jumped at a chance to justify her presence in the situation, thumbs hooked in her belt loops and shoulders snapped back.
"A student?"
I shook my head and stuttered.
"No, but don't. No. She's not a student."
The librarian got up from the bed next to me, unclutching my hand.
I didn't remember her sitting down.
I didn't remember sitting down.
Queer as a two sided dice and even more rare, the librarian collected rubber ducks and nametags from her students brought her from their old jobs, one of which she wore every day. That day the nametag was Javier from Michaels.
Her eyes flashed at the idea of Betty Badge going to her library for not a student.
"She's one of mine, I'll get her."
My daughter had graduated a few months prior, but the donation room where students discreetly shop for gently used clothing and accessories without intrusive eyes or platitudes was in shambles and the librarians didn't have time to organize it, so she volunteered her afternoons to keep it tidy while hunting for her first job and applying for scholarships. It was a familiar job, her entire senior year was spent with free block folding clothes and facing shoes so it looked more like a second-hand store and less like a closet.
The librarian returned with my daughter, and I stared at the earthquake puppets quaking in my lap, hands and fingers that made as much sense as ii:AT.
The nurse explained to her that I shouldn't be left alone until the doctor called back.
♤
I was sent to the ER.
My labs came back normal.
As normal as they needed to be.
I went home without answers.
That was November 19th.
♤
The next four months were spent trying to convince anyone who would listen that my fatigue, cognitive disfunctions, and memory loss were getting significantly worse.
My family at home noticed but there was little they could do but help me cope, or avoid me altogether when the confusion led to frustration led to anger led to despair.
I know why my doctors didn't want to hear it.
They don't want to hear any sign that I'm decompensating.
I turned 40 a few months prior to my diagnosis.
They don't want to tell the homeless mother of a disabled nine year old and a burgeoning young adult that she could be on the brink of deteriorating in front of her children.
It's so much more comforting to assume I'm scared and hyperbolic.
♤
Almost exactly four months after my episode that last week of work, I got lost in the massive medical complex housing the Hepatology clinic and arrived 20 minutes after my scheduled appointment time, too late for the ultrasound I'll be getting in May instead.
The doctor was kind, tip toeing toward my history of drinking until I told her I knew it was a factor and had already started peth tests to establish a history of sobriety.
She went on to explain why I'm going to die without a new liver, and why I'm not sick enough yet to be put on a transplant list. It's inevitable, I'll get there sooner or later.
My body will die without a new liver.
But they have to keep the list short. There's only so many organs to go around.
The sickest with the highest chance of recovery are prioritized.
I'm neither.
Yet.
She described the liver as a sponge that cirrhosis turns rock hard, rendering it useless for filtering toxins effectively. Those toxins travel to the blood, then to the kidneys, the intestines, the heart, the brain…
A MELD score of 15 or higher get you on the transplant list.
Sometimes it’s sooner. Sometimes later.
It depends on how sick you get.
There's four signs they look for when determining if you're decompensating.
1) Esophageal Varices.
Blood flow to the liver gets blocked and new abnormal veins form that can rupture and lead to internal bleeding and shock. They're only diagnosed with imaging.
2) Ascites.
Increased pressure of portal hypertension causes fluid collection in the abdominal cavity, removed through a process called paracentesis utilizing an ultrasound guided needle to drain the fluid. Fatal if left untreated.
3) Liver Cancer.
The change in cellular structure during cirrhosis increases the likelihood of developing cancer. Most patients with liver cancer have a history of cirrhosis.
4) Hepatic Encephalopathy.
Build up of toxins in the blood causes serious brain dysfunction including changes in behavior and personality, confusion, memory loss, loss of impulse control, motor difficulties, and in late stages coma and death.
♤
When she got to hepatic encephalopathy, I said "that notion is messing with my head".
She missed the joke.
By then I had convinced myself that I was leaning into hypochondria, surely a natural reaction to the extreme circumstances I found myself in. I had also been diagnosed with half a dozen auto immune disorders that could also contribute to the symptoms I was experiencing.
She told me to hold my arms out straight, hands up and palms out. Her face softened as she studied my pinkie and ring fingers, twitching of their own accord.
A sign, she told me, of nerve damage from hepatic encephalopathy.
"I'd like to try you on Rifaximin"
♤
Within the first three doses I noticed a difference.
I'm still moving through quicksand but I have some footing again.
The fog is still present but I can focus.
And now I can't keep hiding from what this process is doing to me.
I'm angry. I'm sad. I'm terrified.
I am struggling to reach for joy.
♤
I know many people cringe at that phrase and that’s okay.
We aren't the same.
My fear, my misery, the apologetics for my existence started the day I was born.
I learned very early on that in a world with no safe space and no one to save me, the only way I was guaranteed happiness was to create it myself.
In the quiet moments when I found myself alone, in temporary retreat of psychological warfare, I would reach for joy.
I would make fairy houses in the woods.
I'd draw spirals and grids and stars.
Bake cookies and play Elton John.
Spinning in circles til the world fell away.
I reached for joy so I wouldn't succumb to despair.
But I'm struggling now.
It's new.
The curve is expected.
I'll adjust.
Healing isn't just linear, it's constant. You never stop healing. It gets easier, but you never stop.
♤
I summoned the function to create something over the weekend.
A necklace.
It's simple, start small, but I started it and I finished it.
That felt amazing.
♤
I will not succumb.
I have elevated myself past the need to wallow in despair and I won't go back.
I will reach for joy.
♤
I got myself ice cream.
I made a bouquet of dried flowers for my daughter’s room.
I listened to a song that makes me smile.
…And I set up a desk
in the backyard away from the distractions of the house and the RV, where I can write in the patience of a gentle breeze and pretend that life is sunlight and eternal.
♤
And, tears. Fuck. I love you.
Nothing to say but thank you for your ability to share this. I am glad the medicine is working.