Living with Chronic Pain – A Poem



I read this quote recently at a time when I was suffering with my health. I’ve been living with Ulcerative Colitis for almost 5 years. The first 2 years were the worst – filled with several week long hospitalizations, uncertainty, new medications, and pain. It’s an autoimmune disorder with no clear cause or cure. Towards the end of that dark period I met my husband who fell in love with me and insisted on getting married regardless of what was to come. After getting married I had a wonderful 2.5 years symptom free and reduced or got rid of most of the medications. I had a healthy pregnancy and gave birth to a beautiful healthy baby boy. But now it’s back. And I’m struggling again but I have hope and I am patient. Everyone has their challenges. I felt that writing about it would be cathartic for me so I wrote a poem, something I haven’t done for a while and here it is. My religion, Islam, really has helped me to stay grounded and maintain perspective in times of darkness in my life and I am forever grateful to God for all that has happened in my life and the wisdom behind it all which I’ve only come to appreciate after the fact more completely. 

I want to say to anyone out there suffering with chronic health issues – live your life to the fullest. Don’t give up or give in or let people place limits on what they think you can’t/can’t achieve or what you should/shouldn’t be doing. I thought at one point I would never get married or have children because of what people actually did and said to me about my health and I almost pushed away my husband when he was interested in getting to know me because I didn’t want him to suffer or hurt him with my suffering. It was an Imam from California who I went to for consolation about another issue that answered questions I hadn’t even asked but had been burning away at me. He told me to get married, have kids, live my life. He told me his wife and her sister both have Lupus and I saw how happy he was when he lit up and spoke about her. And that gave me the courage to move forward with my own life and go after what I wanted in spite of being made to feel less deserving/less human by some people’s attitudes in our community towards illness – especially when it comes to marriage. 

Everyone will be tried and tested with things in life – what defines us is how we deal with those challenges. 

Poem:

Living in chronic pain

A thousand lifetimes in the blink of a second

A dessert to cross

One scorching footprint at a time

A purifying cleansing inferno

That which completely consumes the self

Until nothing exists but Him and you And you are in His presence always

Walking alongside Him

A transcendent honor, a taste of otherworldliness 

That temporarily frees you from 

The timeline that bounds you 

Towards an unknown destination. 

In your mind you’re screaming

For that relief after hardship

The ease that’s promised. 

The embrace of mercy

A release into an ocean of weightlessness. 

Existence without pain. 

You yearn for a finality that feels elusive in spite of knowing its unquestionable certainty. 

Patience. 

You know it’s beneath you

To disturb the harmonious peace of the world. 

For that which is discordant within 

And you must strive to pace forward

Inch by inch

With every last ounce of dignity 

However much longer there is to go. 

Brace yourself with prayer and patience

And shine your light on the world as long as your torch may burn. 

Strive to guide and give warmth 

Not destroy and scorch. 

For the end is near always nearing. 

And what we leave behind shapes our destiny. 

Pain and mindfulness. 

Live your life in the spaces between the sentences – if it must be so. 

Let your light shine from behind the cracks. 

Your shell is but a shell. 

Your soul is a graceful thing

So let it sing.