Poems from Our Community

“My feeling is that poetry is also a healing process, and when a person tries to write poetry with depth or beauty, they will find themselves guided along paths which will heal them, and this is more important, actually, than any of the poetry they write.”

-Robert Bly

Recently, twenty-five of our community members with vasculitis gathered with poet Jim Elsaesser over Zoom for a Healing Poetry Workshop. They spent nearly two hours talking, exploring, writing, and sharing in community.

Several of the participants have offered to share their poems. May their poems touch your spirit and remind you: you’re not alone.

What illness looks like

by Debra

I stare at the trees outside my big picture window.

Cloistered in my bubble of glass and separated from the buzzing world outside, a stark contrast to the silence of my distinct universe.

I stare at all the ways and means of days gone by

I miss me sometimes.   

My head races with all the things I want to do and as I try to rise,

I am swept back down as an avalanche of fatigue or pain washes over me.

I am better these days,

I tell myself.

I am better,

as I walk and do my physical therapy

My intentions are good.

I have not regained my life back; it is gone like a joyful cruise beyond the horizon. 

I’ve been left on the shore of a bizarre and unfamiliar land.

Forced to create a world that’s new,

Rising from the ashes of what remains.

Waiting … to feel better, to get energy, to function, to socialize.

I rest……………..

Sarah’s poem:

The poems that had been hiding

In the eyes of the skunks for centuries

Crawled out and curled at his feet

I too hide myself

From others

From me

With my illness

Afraid I may not be able to handle what I find

Not sure others can

It is not always intentional

But it is always suffering

Self imposed loneliness

So I must push

To crawl out and curl up at one’s feet

Is courage

Is wholeness

Is honesty

Is

Maybe

by Martha Ann Najera’s

Maybe if we re-invent whatever our lives give us, we find poems.

Poems are everywhere in disguise. Oft overlooked as trivial, lacking meaning, power, virtue.

Let’s take time to notice, truly notice. Let’s take time to breathe, truly breathe. Let’s open our eyes, hearts, spirits to the beauty around us.

Life is what we choose to make it. Let’s uncover the hidden sublime and bask in its glow.

If I Speak

But it’s hard for others to see what you sense and feel. You look fine, they say. So well rested as if you just

holidayed. The welcome backs as if nothing’s changed. Don’t they see or sense the danger that looms ahead with

every twist and turn? Silent symptoms that make my insides scream and tremble. Need I fear? If I speak, will they

care?

Let Me Know

by Bari Murray

Let me know

What you think

How you feel

If you’re in pain…

Today,

Tomorrow

Or some day in the future

Here’s my cell number

Whispered the smiling, caring

Rheumatologist with the

Gold leather shoes

Thick brown glasses

And long white coat

Handing over a yellow

Post-it note

Walking out of the clinic’s room

Just learning about

My life-threatening diagnosis

I thought

Maybe

Life with vasculitis

Will be ok

And three years later

It is…

Jessica’s poem:

Maybe if we re-invent whatever our lives gives us

What a life I can have

I could travel all around the world visiting every country meeting

it’s amazing people and learning its culture

I could  run a marathon like the big one in NYC and feel the breeze pass by me

I could build myself a huge pink Barbie palace with a matching pool

where I can swim all day

I could learn to fly any plane so I can travel anywhere I wanted on a whim

I could become a bakery chef designing the most delicious  chocolate

delights ever seen

I could  become a medical researcher and create treatments to cure all

rare diseases in our world

Back to reality,

I am who I am with love

I thank my family and friends for their endless support

I thank my chihuahua dogs for their cuddles and endless understanding

Lastly, I thank my heart and soul for being my best friend