The Mockery Continues

Canto III: Past medicines reviewed

He knew Tysabri was temporary;

Another med’s search became primary.

Fearing that the dreaded PML would rise,

Leaving Tysabri was not a surprise.

5 He spent that year searching for something to

Replace it. He then found one to rescue

Him: Tecfidera, once called BG-12.

Deep into this medicine did he delve.

He found anecdotes and many reports

10 Lauding it. Switching to it, his doctor also supports.

Tecfidera does its job well for a year,

Then the threat of PML did appear,

And another medicine was needed

So the pill Aubagio succeeded.

15 And it appeared appeared to be working.

Well.Yet another problem was lurking

Under the surface, waiting for its chance

To strike, allowing MS to advance.

Soon the cane became an obsolete tool,

20 And switched to a walker. Like an old fool

His steps were few and his falls severe.

All too quickly it was made very clear

That he could not drive, and he could not walk.

He met with his MS doctor to talk

25 About another medicine that could

Better slow this regression, doing good

Work and weakening its grip on is life. 

He hopes Rituxan will settle the strife.

Now, he waits six hours for it to cease

30 Infusing through his veins, the final piece.

-Josh Evitt 2019

Canto II: More Mockery

Once all of the pre meds have run their course,
It is time to begin this visit's true source:
Rituxan. Now, he waits for five hours
With his phone, he fights as boredom devours
5 The slowly dwindling hours of the day
With thoughts of the meds he’s met on the way.
Betaseron, with its odd injection
Schedule. It offers hope of correction.
The symptoms abate, and the falls decrease.
10 Happily, he had a four year surcease
Of symptoms while betaseron worked.
But, unbeknownst to him, a relapse lurked
Beneath the surface of his failing med
Taking him off of his feet, bound to bed
15 Betaseron’s time is now at an end.
It’s now copaxone’s turn to try and mend
This relapse with a daily injection,
And take MS to a new direction.
For three more years copaxone fight MS.
20 Soon, a greater relapse causes distress.
Losing a teaching job, driving, and sight
Copaxone’s failure left him in a blight
Of spirit, body, and his failing brain.
He knew then that he’d never teach again.
25 But then Tysabri arrived, and with it
Appeared an unexpected benefit:
He was able to walk without his cane!
Then he became a teacher once again.
It seemed that tysabri had halted the
30 Progression of MS through his body.
His life felt restored, and hope did return!
But yet there was still one lesson learn.
But for now, he exults in Tysabri,
Unaware of his future misery.
35 Fondly, he remembers the joy it brought,
In spite of it being with danger fraught.
Then, he remembers tecfidera’s rise
To save the day and its evil disguise.
Tecfidera’s relief went not too well,
40 Awakening the threat of PML.

March: A Mock Epic

A Mock of a Mock Epic

     For the month of March I was inspired by: the length of my rituxan infusions, six hours; the distance to get my infusions, 90 miles one way; and the difficulty of getting there, Atlanta's traffic, to attempt a mock epic that tells the story of Rituxan.

So, of the trials and deeds of Ritiuxan, sing in me, oh muse

Canto I: The Journey Begins

Awake before the illustrious sun
Sends shiny tendrils, waking everyone,
He sits, guiding his chair into the van,
His cell phone charged and displaying a plan.
He climbs from his chair to the driver’s seat. 5
Wheelchair secure, he drives onto the street.
In Toccoa, traffic is quiet, calm.
But, he knows, that like a ticking time bomb
Rush hour traffic is ready to explode
Spreading a mess of cars over the road.  10
Comfortably, he drives through Gainesville’s sleeping
Rush hour before the traffic starts creeping
Onto the highway. Now, he drives warily, for he knows
That as the morn progresses, traffic grows
From the slight flow of vehicles wanting  15
To beat the oncoming rush, so daunting.
The sun is awake, and his journey’s end
Looms off the highway, just around the bend
Off of Eighty-five’s exit: eighty-six.
Help with his MS is what it predicts.  20
Finally! The Shepherd Center appears,
The home of his relief for many years.
Cheerfully he steers the van down Peachtree
Road, and then greeted by security.
Arriving early allows him to park  25
Closer, so that he can disembark
From his van and easily he can roll
Into the Shepherd Center, a nice stroll.
His chair parked and now he waits for the call
That will summon him down through the long hall  30
 And place him in the infusion center,
Where all of the ‘pre-meds’ wait to enter
His veins. The pre-med injections are done.
He thinks about how this trip had begun.

How I've Evolved

Evolution or Adaptation

Thanks to this MesS, I’ve learned new ways for doing old things.
From bathing to walking, from driving to writing, so much has changed.
Sometimes I feel as free as a bird-with clipped wings.

Because of the adaptations I’ve made, a voice in my head sings:
“Trying to adapt rather than just sitting seems quite deranged.”
Thanks to this MesS, I’ve learned new ways for doing old things.

One adaptation that multiple sclerosis brings:
Whether short or long, the details of all trips must be pre-arranged
Sometimes I feel as free as a bird-with clipped wings.

At times the reality of this MesS is so clear that it stings
To look back at that I have lost. How much I’ve exchanged.
Thanks to this MesS, I’ve learned new ways for doing old things.

Yet there are also times when, in my favor, the pendulum swings,
And I realize that rather than gone, some skills are just interchanged.
Making me feel as free as a bird-with clipped wings.

From all of these adaptations, one important thought springs:
My resolve will need to remain unchanged.
Despite this MesS, I’ve learned new ways for doing old things.
Someday I hope to feel as free as a bird-without clipped wings.

Full Time PT

Physical Therapy

This MesS has taken so much from me.

I now must complete old tasks in new ways.

Hope for a little of what I have lost lies in physical therapy.

At the beginning, a difficult path is my only guarantee,

And, despite how much I try, my body still disobeys.

This MesS has taken so much from me.

Despite so much failure, I am starting to see

That this commitment is for life,not just a few days.

Hope for a little of what I have lost lies in physical therapy.

Falls used to require mere seconds for recovery. 

But, now what took minutes takes hours in a daze.

This MesS has taken so much from me.

I’ve gained some new skills, providing a new discovery:

Falling and recovery now have entered a new phase!

Hope for a little of what I have lost lies in physical therapy.

It hasn’t been easy, not a pleasant journey,

But learning has helped fight this malaise.

This MesS has taken so much from me.

Hope for a little of what I have lost lies in physical therapy.

-Josh Evitt 2019

Giving A Hand

As MS is progressing, I have had to modify some of the simpler things that I used to do: Writing, a switch from right to left; folding, using just one hand; and many more as well.

A Helping 'Hand'

MS has given me a sudden and unfortunate turn.

I knew to expect it, just not yet.

I will not quit; what the right side did, now the left must learn.

Without a pencil or pen, the keyboard allows me to return

To writing again, but still I cannot forget:

MS has given me a sudden and unfortunate turn.

Along with my weakened hands comes another concern:

Falling and recovery causing so much regret.

I will not quit; what the right side did, now the left must learn.

All these difficulties are leading me toward a life quite taciturn.

I cannot deny or ignore how my path is set.

MS has given me a sudden and unfortunate turn.

Walking is a thing for which I still yearn,

But the weakness in my legs remains a threat.

I will not quit; what the right side did, now the left must learn.

I still, one day, hope that my ability to write will return.

For now, I must adopt a new mindset.

MS has given me a sudden and unfortunate turn.

My hope is that what the right side did, soon the left will learn.

-Josh Evitt 2019

Wheels or Feet?

In 2018 I began to use a wheelchair. 

It's been interesting.

My New 'Feet'

While I am relatively new to being in a wheelchair, it has become a thing to which I've adapted rather easily.

The days of using my feet are now done,

Now I am confined to my chair.

I still can move, and MS hasn’t won.

My life in this chair has just begun;

Socks and shoes are now things about which I no longer care.

The days of using my feet are now done.

For a while I wanted see no one!

But, in my new chair, I can now go anywhere.

I still can move, and MS hasn’t won.

In mere moments, it seemed I was undone,

I’d be confined to a powered wheelchair.

The days of using my feet are now done.

Wheels replace the feet, and, yet there’s still fun;

Stubbing my toes is no more an affair.

I still can move, and MS hasn’t won.

So, a new chapter of my life with MS has begun,

And for a while, I had to fend off despair.

Accepting that the days of using my feet are now done,

I still can move; MS hasn’t won!

-Josh Evitt (2019)

The Left Hand of Driving

Driving Without Feet

My weakened legs led to a disastrous mistake.

A vacation from driving I had to take.

Searching and looking, I did finally see

A way to restore my mobility:

Now, one hand steers, the other for gas and brake.

What Did You Say? How Do I sound?

GIF
APHASIA

Sometimes a word enters my mind,
But a path to my mouth it won’t find.
So, instead of, “Hello,” “Goodbye,” or, “Come here,”
A garbled mess is all that you’ll hear.
Aphasia is unkind.
-Josh Evitt (2019)

A Huge Hug

In keeping with my goal for the year, 

here is the next addition.

MS Hug

Once an affectionate squeeze,

It's now maligned by this disease.

The ribs are tight and breathing, a fight.

At times, I can barely manage a wheeze.

-Josh Evitt 2019