Writing, working and young-onset Parkinson's - Kimberly's story
"I describe my approach to life as inhabiting the space between carpe diem (seize the day) and che sará sará (whatever will be will be),” says poet, novelist and Professor of Poetry Kimberly Campanello.
It’s a philosophy which is especially suited to someone living with a condition like Parkinson’s, which can vary so much from day to day.
But she is quick to stress that it’s not only people with Parkinson’s who are subject to daily change: “I am ‘myself’, and this is always in a state of flux, as is the ‘self’ for everyone.
We change according to where we are, who we’re speaking to and what is said, the weather, the books we read, the food we cook…flux is life, with or without Parkinson’s.
“This insight has made me much more empathic and impatient for more empathy all around. All our lives depend upon it.”
Moving Nowhere Here
Although she first noticed symptoms including tremor, arm pain and slowness of movement as far back as 2017, Kimberly wasn’t diagnosed until 2021, when she was still just 42. Her poem about the experience of diagnosis, called Moving Nowhere Here, was published in 2023 in the online version of Granta magazine.
It describes some of the paradoxes of Parkinson’s - movement and stillness, effort and rest. And it seems to have described a feeling that many people recognise. Kimberly says: “I’ve had many messages from people with Parkinson’s and other illnesses and their supporters. It was also the most read poem in 2023 in Granta and is now included in my new poetry book An Interesting Detail.”
Parkinson’s works in strange ways - not only making easy things difficult, but sometimes unexpectedly making difficult things easier. Kimberly calls it paradoxical kinesia.
For me, the rocky inclines of a mountain village in Italy and steep stairs are far easier to manage than the ‘accessible’ spaces of airports, sidewalks, and flat cities like York where I live.
Finding the right tools
Knowing how to adapt, and make the best use of the energy she has each day, has been crucial. “The most useful bits of kit have been my electric foot warmer mat and hot water bottles of various sizes. Shoes with ankle support and stiff soles seem less likely to trigger dystonia (involuntary movements). I also use voice notes (short audio recordings) if I am having trouble typing.”
She’s also been sure to get the tools and support she needs to continue working: Access to Work, Personal Independence Payment and a Blue Badge. “These all ensure I can work as long as possible and not become isolated. The ongoing advice from my Parkinson’s UK Local Adviser and my trade unions has been invaluable too.”
Kimberly does a lot of research from her bathtub (which she refers to as ‘my water office’). “I recently put the message ‘typos courtesy of Parkinson’s’ below my email signature,” she says, which gives her the freedom to spend time on more important things than fixing mistakes in administrative emails. “Plus it raises awareness, including of young-onset Parkinson’s among women,” she adds.
At various times she has used dance, yoga and weight training to help manage symptoms and improve her mood: “I also find that online high-intensity interval training (HIIT) classes are really effective at helping with stiffness and low mood in the immediate term,” she says.
An eye for the unusual
Many people with Parkinson’s are inspired to go back to creative hobbies, or try something new, after their diagnosis. As someone whose work and life are tied up with creative writing, Kimberly has a theory about why Parkinson’s drives people towards poetry. “It could be caused by the medications or Parkinson’s itself, or a combination of both. I really like the notion of ‘atypical salience’,” she explains.
“We notice some interesting, perhaps unusual things and bring them together. Then we refine what we take in to become something for others to experience. This is why I’ve begun creating a new version of Dante’s Divine Comedy. Rather than an ‘accurate’ translation, I am drawing connections between my experiences (including of Parkinson’s) and what Dante depicts – the hellish, the heavenly and everything in-between – to create something new.”
If she could go back and talk to the ‘myself’ who wrote Moving Nowhere Here, what would she tell them now? “All that is important to you now still will be in 4 years. And you will continue to share it with others, perhaps even more so because it matters so much."
Inspired to start writing?
Are you new to creative writing, and not sure where to start? Read Kimberly’s tips for flexing your creative muscles.
Tip 1
Don’t worry about writing ‘about Parkinson’s’ or anything specific. Try instead to look or listen to something in your environment and to respond to it in some way. For example, take some time to look at a photograph or a painting, or listen to a piece of music without writing anything down.
Then, if it’s a painting, put it aside and see if you can describe it using as many sensory features as you can. How does what is in the painting look, smell, taste, touch or sound? Write as much as you can without worrying about grammar, punctuation or spelling. This can be shaped up later.
Or, if it’s music, describe who is listening to it, where they are, and what happens next. This person can be invented, a made-up character, or yourself.
Tip 2
Read contemporary poetry to see the range of things that can be done with words. There are lots of great resources available from the National Poetry Library. You can even check out books online and by post regardless of where you live in the UK. You can become a National Poetry Library member for free.
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