"I am jumping for joy with all the happiness it has brought"

21 April 2020

Julie Stevens - AKA Jumping Jules - turned to poetry to help her make sense of MS and, over 100 poems later, she says it has brought her incredible happiness. Here she tells us about her MS journey and her dream to publish her own book of poems.

My MS started when I was 19. I was at Homerton College in Cambridge training to be a teacher. I specialised in music and found I couldn’t play the piano with my left hand. I couldn’t coordinate my fingers, nor press the keys. This recovered after a course of steroids and rest. Being told you couldn’t go to your first end of year ball was hard! 

Two years later, my legs became very weak and I had to stop all sport. Again, I recovered. I could now play hockey, sprinting down the wing, and went swimming every week. I later developed optic neuritis and this led to being diagnosed with MS in 1995, three years into my teaching career. It was a shock, but was good to have an answer to all these problems. 

After 14 years, now in the secondary progressive stage, I took ill-health retirement. MS was leaving me with extremely weak legs and awful fatigue. My balance was causing problems too. A hard decision to make, but with a young son, this enabled me to spend time with him. I concentrated on that. 

Thirty years after onset, I have two children, walk with sticks, and use a wheelchair, or mobility scooter when going further. I wasn’t sure about mobility aids, but am so glad I have them. They make a huge difference. I don’t have to worry about my legs giving up on me on a shopping trip or day out. My poem 'MS and Me (My Song)' came from this change. 

I started writing poems just over a year ago and now have well over one hundred. MS has given me so many ideas! Going into my own world and putting thoughts down is very relaxing. I have now even started sharing some of them on a website and social media. Reading comments about how people relate to them and enjoy them is great. One lady told me how my poem explained a symptom so well, she was going to show everyone. “You have the words I cannot find to describe how I’m feeling,” she said. It’s amazing that I’m able to help someone with a poem. 

A lot of my poems are based on my experience of having MS and they really have got people talking about it: “I didn’t know it affected you like that” I’m often told. Having been published now in several poetry magazines, I hope it’s not too long before I can publish a book of my poems. MS has led me into the world of writing, open mic events and much more! Jumping Jules is the name I publish under and I definitely am jumping for joy with all the happiness this has brought. You can read more of my poems on my website at jumpingjulespoetry.com with links to all my social media platforms.

MS and Me (My Song)

I’m not going to hide inside
Not going to toe the line
MS and me are going out today
I’m sure we will be fine

First, I’ll take a shower
Feel truly refreshed
But it zaps me all that heat in there
Still got to get myself dressed

My feet are too far down
For socks to easily find
Legs want to have some wrestling fun
With jeans I’m trying to unwind

Going places is ever so hard
Preparation I have to do
Fetching and carrying, dressing and eating
Wearily trying to wade through

Sticks are what I’ll take
Scooter’s charged and ready
MS and me are going out today
Feeling so tired and heavy

With everything I’ve done
I’m really not feeling sure
If I hit the shops weighed down like this
I won’t be carrying anymore

Feeling tired I step outside
Head out for somewhere near
MS and me are going out today
But should I be staying here?

Copyright © 2020 Julie Stevens (Jumping Jules)