Merry Christmas! The Late Edition

It’s been a crazy few months. Wanted to dash off a Merry Christmas and Happy Holidays to you all. This is my favorite gift, from Peter of Wombania

My Christmas Card from the delightful Wombies

My Christmas Card from the delightful Wombies

Taking steps to regain my life back, literally. Really not steps so much as generic ambulation. It’s a start and it’s cooler than bow ties and a fez. The fatigue from the disease is akin to being hit by a truck every single day. The pain too. I ask you all to forgive my absence. The only thing I want for Christmas? A cure for Transverse Myelitis and for all of those who suffer far worse than myself.

Was accepted to the Johns Hopkins Transverse Myelitis program. All set to buy the plane ticket and check in for the first appointment. After much back and forth on the phone it was decreed at the last minute:  there is no housing for out-patients in clinic programs.
What the hell? Don’t they know who I am? Will work for treats.
Rents in Baltimore? Out of my league. Assisted living options in Baltimore for six months? Throw that in the ‘Brother Can You Spare A Dime’ pile as well. Tried everything possible to find funding. Nothing could be done. No charities for TM, no way to set up a fund or charity for myself. It’s still a dream.
Hell, I still don’t have an electric wheelchair, but I’m saving the gelt up.

Making strides far beyond the original prognosis -rim shot-. Hard work makes for amazing results. I lay about the house all day and exercise. It’s possible in Rachael Land
Was given a roughly 10% chance of walking again. Really? Don’t tell me what to do. I’m better off that way.

May you all have a wonderful, fattening, laughter-filled holiday iced with love and joy. If you don’t see me much it’s because I’m working on a new project, the most important one ever. Crafting a new life, learning to walk and talk and shake it baby.

Tripping the Light Fantastic. With no net.
Walk like an Egyptian? Never!
Dance like a Rockefeller? Hell yes.
Puttin’ on Riiiitz!

Putting on the Ritz

Merry Christmas to All and to All a Good Night!
~Miss R

A Poem In the Key of Depression

crows in rain LG

I can beat anything. Conquer anything
From intellectual pursuits to stupid bar jokes
From Music to Skiing
It’s a proven fact and my humility is obvious as you can see

Sitting on the bed
Looking at the damned walker
Thinking of the fall last week that
I told no one about. No more hospitals

Knocked me out cold and caused a concussion
Followed by the first migraine ever
Followed the next day by
Electrical shocks all through my body and numbness

Fuck you body! Fuck you disease!

The truth is kicking my ass
Trying to wrap my broken brain around something
Walking again might not happen at a 30% chance
No dancing no man to love my life a nauseating carnival ride

During the third week in the hospital
Psychosis and hallucinations had stopped
Idiot physicians had jacked me full of steroids and was allergic
Read the records last week they note Explosive Personality

Well when I was drinking and in a black-out it was true
As I read through the charts I laughed
Laughter tinged with grim thoughts
There were no notes on a previous steroid reaction

One night I wandered out to the nurse’s station
And asked for a Cabernet and a Cigarette
Don’t Drink Don’t Smoke What do You Do?
Thought I was on a spaceship. With a bar. It’s so me.

My boyfriend of three years came to visit the third week
After the cognitive functions returned
He admitted after diligent questioning and lies
He had been with another for months. My heart, will and soul crushed then.

So I looked at those paralyzed legs that day
Sitting on the hospital bed going on three weeks
Looking at that damned wheelchair
Knowing he had been cheating on me, why he had not visited but twice and quickly

The number one cause of death from TM
Is Suicide.
Not failure of the liver or respiratory system or falls
Those are the silver, bronze and runner ups

Mom calls every day
She drives from California every two weeks
She does the laundry, prepares food for the freezer
Cleans the house and brings me Fresca which is nice

No longer can I cook, clean or hold anything for long
Taking a shower is a bitch. On a chair. Like a geriatric
Please wash my hair I’m so lonely and it hurts
Feel a burden and pathetic whiner to express these words to anyone

These are my thoughts after almost three months
Working hard each day with PT exercises
Trying to take a few steps no concussion please
Never able to get on my tippy toes again

Fuck you body! Fuck you disease!

Mom called last night and asked how I was
Told her about the anger the shocks, numbness the embarrassment of the steroid reaction
The worthless neurologist with no prognosis and no advice
Exhaustion of the body soul and nerve function and tear ducts

So Mom said Be Glad you were diagnosed so quickly
So what if that steroid caused the staff to treat you as a scary diagnosed psychotic
Your boyfriend was an abusive piece of shit. There is progress. There is no longer a wheelchair
You almost lost your life

And I answered
What Life?