Understanding how a patient makes sense of chronic or disabling illness can be critical to the effective treatment of that illness. Repairing the body doesn’t necessarily repair the life. Patients must confront changes to their bodies and in how they live their lives, psychological dimensions of disease physicians and allied practitioners have appropriately tried to address more vigorously. But human beings, perhaps uniquely, not only live in the here and now but also in a larger narrative of their existence that includes their past and also projects a future. Our identity and self-esteem are not only tied up in what we see in the mirror, but in what others see, and in who we see ourselves becoming: our plans and expectations for ourselves in the context of a long and healthy life. All of this helps us tell the story of who we are. The term “biographical disruption” has been applied to the pernicious ability of disease to damage this narrative. To fully treat disease one must also treat the damaged story. There is evidence that poetry can be part of such treatment, allowing patients to creatively frame and perhaps modify their story through dialogue with themselves and with others.
Below is a poem written by a young woman afflicted with severe arthritis, reprinted from Cases Journal (Cases J. 2008; 1: 153).
Where have I gone?
Where’s the woman who weighed less than 9 stone?
Who wore a dress size 12 and didn’t need to wear shapeless clothes or jogging suits?
Who had shaped and tidy eyebrows that would complement her latest hair colour and style?
Whose painted nails, with manicured hands and feet, were perfect for holidays in the sun?
Where’s the woman who had a vocation not just a job, but who exists on benefits, a step away from poverty?
Where’s the woman who owned her own home that gave her safety and privacy, it was her pride and joy?”
Where’s the woman whose hobbies include travel, gardening, decorating, furniture restoring, sewing, reading and studying at home?
Here I am and life before my impairment has gone, the only thing I can do is hold a pen with a special grip and writing is agony.
Where has she gone?
Where has she gone?
WHERE HAVE I GONE?
Do you see me?
How can you ever know me, when all you see is my chair?
My limitations are all you see and you say they complicate your life.
Will you ever see the deep pools of love in my eyes for you?
When you half close yours with pity and turn away from me.
The beating of my heart in expectation of your closeness isquickly cooled by your fleeting hug or, worse, patting my shoulder.
I wait in anticipation remembering the taste and softness of
your kiss, you offer me a warm ‘peck’ on the cheek.
I smell your aftershave … you say I smell clean!
I remember running my fingers through your hair,
Ripping buttons off your shirt but that’s difficult when you
stand behind me pushing my chair, we can’t even hold hands anymore.
The power of my emotions makes me feel strong,
Then I catch that pitying look in your eye,
They die in my heart.
I do not speak, my smile fills my face but you will never know …
You’ll never see the real woman who is me
Who sits and is seen by the world framed by a wheelchair
Cut off emotionally just because I cannot stand or walk.
Thank you to those who take the time to listen to difficult and unclear speech, for you help us to know that if we persevere we can be understood
Thank you to those who walk with us in public places, ignoring stares and whispers from strangers, for in your friendship we find enjoyment, laughter and happiness
Thank you for never asking us to ‘hurry up’, but even more special is you don’t snatch our tasks from us or offer ‘Care’ in such a way as to make us feel that we are still children, with no control and respect
Thank you for standing beside us when we enter new experiences and try new adventures
Though our success may be outweighed by our failure, the experience will stay with us forever and there will be many occasions when we surprise ourselves and maybe even you!
Thank you for asking for our help and expertise,
As self-confidence and awareness come from being needed by you and others
Thank you for giving us respect
You acknowledge our value as experts in our fields and that we require to live with equality in society
We shouldn’t have to ask or have laws to enforce it or remind you
Thank you for assuring us that the things that make us individuals are not our medical impairments, as everyone has those and they don’t define ONE’S SELF, it’s people’s attitudes that create barriers that exclude us from you.
Treat us as we treat you.