About Lupus

Poetry Can Help Cope With Lupus

April is National Poetry Month. This is a column about coping with lupus.  To me, the connection is clear -- poetry can help people cope. The way a poet captures a feeling or a moment can make us feel less alone. Sometimes a poem seems to express exactly what we feel. Poets sometimes share their experiences that teach us life lessons. These are some of the reasons why I have used poetry in my support groups.

Poems and their Messages

Below are two poems that I have used in my groups. Remember there is no right or wrong way to respond to a poem. Each reader will have a different response because we all have different life experiences and different ways of taking in the world. After you read the poems, ask yourselves:
  • What are your favorite lines?
  • What do they say to you?
  • Can you relate them to your life with lupus?


The Gift
By: Czeslaw Milosz

A day so happy
Fog lifted early, I worked in the garden
Hummingbirds were stopping over honeysuckle flowers
There was no thing on earth I wanted to possess
I knew no on worth my envying him
Whatever evil I had suffered, I forgot
To think that once I was the same man did not embarrass me
In my body I felt no pain
When straightening up, I saw the blue sea and sails.


One way to look at this poem is as a description of a perfect day. Milosz describes doing simple things on this gift of a day. He worked in the garden. He noticed the hummingbirds and the sea. He let go of resentment and bitterness of the past. Milosz’s perfect day is simple and without physical or emotional pain. He experiences the present moment of his surroundings. These are things that he might value most in his life. What do you value most? What is a perfect day for you?  Is it a day where your body feels no pain, like it is for the poet?

I encourage you to also watch the video of the poet Milosz reading the poem. It adds another dimension.



The next poem I'd like you to think about is "The Journey."

The Journey
By: Mary Oliver

One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice --
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"
each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations --
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do --
determined to save
the only life you could save.

The poet reminds us that we are all on a journey. What is your journey like living with lupus? The hope is that the road to knowing how to live with lupus eventually becomes clear -- clear about things like what steps to take to cope with lupus. For example, people find ways to overcome fear, keep life simple, or keep stress as low as possible. Maybe those steps include eating healthy and getting enough sleep and exercise. Perhaps it has to do with going to support groups and finding other people with lupus to connect with.
But the road is not always so clear, especially early on when the diagnosis is new. Maybe those voices shouting “bad advice” feel too loud. Whose voices are they? Are they inner voices? Are they from people in your life? Or both?
What old house is that – the one that trembles? Is it your body trembling in fear? Or does it mean something else?
People in my group particularly related to the lines “You knew what you had to do, though the wind pried with its stiff fingers at the very foundations….” For some, the stiff fingers of the wind reminded them of joint pain and lupus, and also the way weather impacts how much pain they feel in their joints. But they knew what they had to do, even while the pain tried to stop them. Have you experienced that? Pushing through to live life the best way possible even when the stiffness, pain, and fatigue try to stop you?
The journey is not always easy. Living with lupus is not easy. The road is often “full of fallen branches and stones” that try to get in between you and your destination. What are those fallen branches and stones in real life? What are your personal obstacles with a life with lupus? Maybe they were those first few doctors who missed your diagnosis. Maybe they were those loved ones who you thought would be there to support you, but weren’t. Maybe they were medical complications that took you by surprise.
But “little by little” things begin to change. There were those old voices that used to shout bad advice and demand things from you when what you need to do most is to take care of yourself. Taking care of yourself is not an option when you have lupus. It is a must.
Because you kept focused on what you needed to do for yourself, those old voices start to fade. Your true voice emerges, and you can hear and understand it clearly. That inner truth is what guides you and helps save your life. That is now what guides you in your decisions and on your journey.

Your Own Interpretation

I shared how my group members and I interpreted these poems and related them to living with lupus. But maybe you interpreted them differently. Did something stand out to you that I didn’t cover here? What do these poems mean to you?  Tell us on the S.L.E. Lupus Foundation Facebook page. Or share a poem that means something special to you.