Category Archives: Poetry by Survivors

Survivors are invited to share their poetry here.

The Sun In My Heart ~ An Arachnoiditis Survivor’s Ode to Spring

(A Poem about coping with Chronic Pain Inspired by the warm morning sun and The Cat In The Hat by Dr. Seuss) 

© Sheila L. Kalkbrenner

Spring Morning Flowers
Morning Sun

The sun, how it shown

It was too bright to stay

In the dark in the house

On this warm, warm, spring day

I sat there with wonder

On the deck, in the sun

And I said, “How I know

There is much to be done!”

The seeds did just sprout

And the debris from the fall

Still sits over the lawn

So, I wrote a new list

Found my yard shoes and all.

So, all I could do was to





And Oh! How I loved it!

Every little bit!

And When

Something went Buzz!

And I heard a loud Chirp!

I looked!

Then I saw them hovering About

The Bees!

And the Robins!

Spring! I had to shout!

And they chirped and buzzed

As I worked with the dirt in and out.

I know I’ll be tired

But the sun is so sunny

And I can have

Lots of good fun that is funny!

I know some new ways that I can rest

In Between

I know some new tricks

So it won’t be so mean.

A lot of new things

I can do just for me

My Body

Will not mind at all what I do.

But, that Voice said, “No! No!”

Make that urge go away!

Tell the Sun and the Seeds

You just cannot go to play.

You should stay down here.

You should NOT move about.

You must be still here

When your Body’s worn out!”

“Now! Now! Have no fear.

Have no fear!” said my Heart.

“These things are not bad,”

Said the Heart that is smart.

“Why, we can have

Lots of good fun, if we move,

With one step at a time

We will get in the groove!”

“Lay me down!” said the Pain.

“This is no fun at all!

Lay me down!” said the Pain.

“You do know I could fall!”

“Have no fear!” said my Heart.

“We will go slow, start small.

We will do little bits

And rest to keep tall

With our tools in one hand

And our mat on the ground

This work is not all we can do!

When the sun is around!

“This is great!

Moving right now!” said my Heart.

“With my hat on my head

And my gloves in the dirt

I can plant these new seeds

I can work with my hands

And find edible weeds!

To be food on my dish

And know

I got up on my own, in the sun

Careful not to fall

But I knew

That was not all….

Slow at first

Nothing worse

Pacing the time

It is fun in the sun

But you have to know how.

I can slowly get out

With the plants and the trees

I will rest in the grass

I will do as I please.

At the pace to enjoy

All the warm things around

And Look! With Good sense

I can breathe with the Pain

I can work or have fun

And it’s keeping me sane!

But that is not all.

Oh, no.

That is NOT all…

That is what my Heart said…

It’s not all in my head.

I get up. I get down.

From the Spring to the Fall

And Pain is NOT

The One Boss of it all!

And my heart can sing, too

With Bees and with Birds

I will know all the words.

I work, then I rest

I know when it is time

I will stop when I should

Shining is good!

Now look what I’ve done

I have found a new way

Inside or outside

I can choose every day!

I worked and listened

The pain, it will stay

But my heart is here, too

It can come out to play.

It should not be stuck

When my body cannot

I am out of the house

And I like it a lot!!

And it likes to be here

My heart, likes it a lot.

The green and the sun

It really hits the spot.

“I will NOT hide away

When the pain makes me slow!

And so,” said my Heart in the Sun




I will listen

And do this the way that we know!”

My Body gave out.

But then strong as an ox

The faith in my Heart

Said, “Get out of this box!”

“It’s a hard dark box.

It is shut with a hook.

But look at this trick,”

Said my Heart.

“You can look!”

There is a hole in the top

The sun shines through this part.

It gets you out of the dark box,”

Said my Heart.

“In this spot there are things

That will show you just how

To reach through these walls

But, you must want to now.

Love will pick up that hook

You will see something new.

Two things. And I call them

New World and New You.

These things will not bite you.

They want to have fun.

Then out of the box

I walked into the sun!

My breath it came fast

It said, “What will you do?

Would you like to find hope

With New World and New You?”

My Body said I

Was not sure what to be BE

But I chose to find strength

In New World and New Me.

I looked at them hard.

And my heart said, “Go, Go!”

They will let you get out but, slow you must Go!”

You need to be there

The old body it’s not

Take it slow. Let it show.

It’s the one that you’ve got.

“No fear of the pain,”

Said the love in my heart.

“Can stop these Two Things.”

And then slowly I sat.

“They are strong. Oh, so strong

They have come here to stay

They will give you much love

On the best and worst days.”

“See Them. Just There. Next to Old You?”

Said my Heart.

“They work for new life,”

Said the Sun in my Heart.

“Yes! The pace is slow

And your body is on the cot

But you should not stay

In the BOX! You should not!

Oh, the things you will miss!

Oh, and miss you they will!

You have got to try it!


Then my Body said, “I

Cannot run down the hall.

I will try these new things

And get up when I fall.”

Bump! Thump! Thump! Bump!

My hands broke down the wall.

New Me and New World

They woke up! They sat down!

Like the string of a kite

It all floated around.

The light of the day

The warm blue, green, and gold

Lifted the lid of the box

And renewed what was old!

Then these things walked about

With deep breathes, and short steps

And with hope and small dreams

In search of New Tricks

And I said,

“This is NOT the Old Way that I played

My body may fight it

But, it’s moving today.”

Then my Heart said, “Look! Look!”

And I knew something was near

“Your body is hurting now!

Do you hear?

Oh, What will you do with it?

How will you stay?

Up in this Life, like this

Will you hide it away?”

“You must decide fast!” said my Heart.

“Do you hear!

It’s your Life. Your Moment.

Just getting shorter

While you waste it right here.

Think of something to do!

You will have to work hard

For New World and New You!”

So, taking a small step

I reached out for the rail

And I said, “With some help

I can get there I bet.

I bet if I ASK

I will find those Things yet!”

Then, I held tight to the rail

Moved forward from the top

Pain, it came back. A rest.

These Two Things would not stop.

Then I said to the Pain,

“Now, I know you will stay

But, step to the side

These things can make a New Way!”

“Okay” said the Pain.

“I will stay by your side…

Oh, dear.

I can’t go

I can’t go

But you know

Your Two New Things opened

That dark box with the hook

And we both can get out

If we know how to work

Together, It’s good.” said the pain.

“We’ll do it your way, Yes.

But your body will hurt.


And it may be so big

And so deep and so tall,

We cannot pick it up

There may be no way at all!”

But, then!

Who was back for the day?

Why, my Heart!

“Have no fear of that mess,”

Said my brave little Heart.

“We’ve lived through this thing

And so…

There is always another

Good trick you should know.

Then, I felt it reflect

On the times I was down.

It remembered the pain

With cold snow swirling ’round

And the shakes, and the grief

And the aches, and the burn

And the looks, and the wish

For some sleep, and the night

And it put them away

And it said, “Now it’s Time.”

And it showed me the grace

And the joy in between.

Then my Body and Heart

Said to the Pain,

“Without any Fun?

Tell us. What does it mean?”

Tired of pain I did not know what to say.

Can I look for

The grace and the joy of each day?

With this Pain will I see it

Now, what will I do?


What would you do

IF your Body asked YOU?


© Sheila L. Kalkbrenner

About Square Time

Time stands still as it passes us by
parallel lives
wondering why
wait and watch
get to know
rehabilitation moves so slow
sweating, shaking, holding time
in trembling hands
pages align
the muse
falters and flashes
adhesion brings ashes
stifles the spark
struggle to know
adjusting the pace
wasn’t a waste
resigned, refined
a new design
today, tomorrow
tainted with sorrow
blessed by hope

As I assembled the work for A Round Now In A Square Time I was forced to revisit the phases and stages of my own physical rehabilitation. The internet has the power to be an incredible rehabilation tool for conditions which leave the patient isolated from society. Parallel lives meet in the support groups there. They share resources and frustrations. They grieve in empathy for the time that was and the now that is. Together they inspire enough hope for tomorrow because there is strength in numbers. The internet links us to the outside world while we virtually live within the confines of adhesive arachnoiditis. Until we adapt and find a way to live independently in real time we are forced to survive vicariously and at the mercy of the people around us.
Active members of Life With Arachnoiditsand Arachnoiditis Society For Awareness and Prevention kept me in touch with virtual humanity while I was re-defining my physical presence in the world.Image