As part of Alexandrina Hemsley’s July Guest Editorship, artist and writer Clover Peake discusses experiences of hidden illnesses, the refuge of her imagination and living with continually interrupted creative processes
I have hypermobile Ehlers Danlos Syndrome, fibromyalgia, hemiplegic migraine, advanced keratoconus, advanced osteoporosis, asthma, endometriosis, Postural Orthostatic Tachyardia and a vascular defect. Also, symptoms of CPTSD.
I have never known a way of life unaccompanied by these conditions. Difficulty with how my body functions has always been the case. I am 44. I had a hysterectomy at 40 because of endometriosis. Since the surgery, which was meant to improve my pain, I have been diagnosed with many of the other conditions. To the naked eye it’s not possible to see the difficulties I have unless I use my walking stick.
I had no idea that this would be an inflammatory thing to do. To appear able-bodied but using a mobility aid can really annoy some people.
I spent many difficult years functioning with a multitude of unrecognised conditions. The absence of clarity became part of my personality. It was easier to be seen as unreliable, flaky, lacking in stamina and perseverance as I had no idea what the problem was.
Everything was placed under the umbrella of depression. This never felt accurate to me. I’m sure I was depressed, but a mental health diagnosis became a barrier to further medical understanding.
All my symptoms could be passed off as anxiety or a low mood state. It was as though mind and body are incapable of meeting. Frustratingly, many of my conditions do not show up in regular clinical tests. Armed now with more understanding of my health, I am forging a new identity. I was convinced that I was feeble, lazy and a bit useless. However, now I realise that I have been fighting secretly for a long time.
I can experience any set of symptoms at any point during the day. My joints dislocate very easily and all of my internal functioning is defective. It is hard to go too far from home without a serious back-up plan. A large part of my day has to include lying horizontally so that my vascular system, blood pressure and heart rate can repair. I try to prioritise a reserve of energy for my son who is 10 years old and has autism, severe dyslexia and short-term memory dysfunction.
It is possible in certain social situations to conceal my impairments, though very often it is easier to stay at home because my unpredictable symptoms can sometimes cause me embarrassment. Not only are these symptoms invisible to the naked eye but it is ironical that if I want to take part in a social or professional event, the effect on my health will be felt several days later.
I have been writing poetry, dancing, singing and making work since childhood. Being an artist with a disability means that one’s endeavours can be relegated to an amateur role, as it is difficult to live and work in the way that art demands. Creative work is not a luxury. It needs a consistent discipline and sustained commitment.
My progress is checkered – focus is interrupted by weeks of pain or illness. I am constantly starting my work from scratch. I have to adapt, if my hands are hurting, by dictating ideas. If I can’t think, due to fatigue and oxygen depletion, I might embroider or scribble. I create haphazardly and have to engage with my work in short bursts. There is little appropriate support for the chaotic unpredictability of working with hidden illnesses and I am still learning to live with constant interruptions.
Creativity came to me early as it was a way of fully living out my desires as a human being. As a child I was both physically dynamic and fragile. Often in hospital or recuperating I spent periods of time watching other children take part in activities knowing that I couldn’t join them. In my imagination I could create a freedom that transcended physical ability. I was brilliant at detaching from the pain and terror of not being able to breathe properly. Once, my heart stopped beating but an adrenalin shot restarted it. My skin was raw with eczema and often bandaged. I had daily injections of prednisolone from the age of three. I lived big in my imagination though, often from my bed. Over the years the balance has had to change. I am learning that in my slower more restricted physical life I have become more hidden but my creative practices become more visible.
From Beasts and Volcanoes
The poetry and tapestries produced for Archetype, which was published last year were a body of work predominantly created through the limitations of my health and domesticity of single motherhood. The tapestries were a half cross stitch in ox blood wool. It’s a ruminative and meditative medium. The poems were written often a word at a time on my phone while pushing my son in a swing with my other hand.
The themes and influences stemmed mainly from my studies of the classical world and languages. I reflected on texts that survive only in fragments like the poetry of Sappho and from Aeschylus’ Agamemnon, in which weaving, tapestries, thread, stitching is referred to as an edumbration of the impending blood revenge. The power of familial life, motherhood, childhood, and loss were the driving thoughts within the work. I used the work as a lament, a catharsis of aspects of loss within mine and my son’s life.
At night when I lie down
falls through my face
Sleep is a stroke over my thoughts
rupturing when you cry
The un-twinned sounds drags me to my feet
That first night
talking in my sleep
I saw the stars shine
My mother stacked pillows
instructing the angle of my breast
I forgot about the cow parsley
along the lanes
The sun hung replete
over the horse-chestnuts
bearing white conkers
split early from all the rain
I wanted you to hear with ears
real as sea shells
scraped from my brain
You curl into my palms
I keep your soundless
name carved on my skin
These words are the gulf
where we drift
Clover Peake is a writer, artist and designer. She has two published poetry collections Archetype (Spuyten Duyvil, New York 2018) and Beasts and Volcanoes (Knives Forks and Spoons Press, 2019). She works in fabric, tapestry, embroidery and drawing. As a designer, she contributes bespoke clothing to numerous specialist clothing outlets. From 2016-2018 she developed her own boutique ‘Peake boutique’. She also designs costumes for short films and other performances, including, Florence Peake’s Rite, at Le Palais de Tokyo, Paris. Her work is displayed in private collections nationally and internationally.
For more information go to www.cloverpeake.com