“Nerve endings” 2026
“My PhD will be researching my physical disabilities through large-scale light installations. My practice aims to create interactive, immersive experiences that are informed by the Suffolk landscape, drawing on Merleau-Ponty’s writings on perception, embodiment, invisibility, and experience.”
Last year I was diagnosed with three conditions, one being Chiari Malformation. A Chiari malformation is a structural defect where the lower part of the brain (the cerebellum) pushes down through the skull opening into the top of the spinal canal. This abnormal positioning causes pressure on the brainstem and spinal cord, often disrupting the normal flow of spinal fluid. Basically, a fancy headache. (That was sarcasm)
With this specific condition I have experienced nerve damage, pressure headahasches, that even come on if I laugh too hard and other neurological side effects. Something I have experienced for over ten years. I just now have a name for it.
Utilising fibre optics represents to me nerves, fragility and peacefulness. A medium I have not yet experimented with. This specific experimentation reminded me of one of my MRI scans from last year. With the elongated middle part having a resemblance to my spine.
Last year I was diagnosed with three conditions, one being Chiari Malformation. A Chiari malformation is a structural defect where the lower part of the brain (the cerebellum) pushes down through the skull opening into the top of the spinal canal. This abnormal positioning causes pressure on the brainstem and spinal cord, often disrupting the normal flow of spinal fluid. Basically, a fancy headache. (That was sarcasm)
With this specific condition I have experienced nerve damage, pressure headahasches, that even come on if I laugh too hard and other neurological side effects. Something I have experienced for over ten years. I just now have a name for it.
Utilising fibre optics represents to me nerves, fragility and peacefulness. A medium I have not yet experimented with. This specific experimentation reminded me of one of my MRI scans from last year. With the elongated middle part having a resemblance to my spine.
"Grief" - 2026
“I was chatting with someone the other day about life before and after a diagnosis.
Before the diagnosis, even though I knew that something was physically wrong, it felt like a sense of normality—a way of life to which I had grown accustomed. I couldn’t remember a day free of discomfort or pain.
Receiving a diagnosis provides a label that gives direction to your symptoms, but it also marks a clear division between 'before' and 'after.' It changes the way you perceive life once you realize that what you considered 'normal' was actually anything but.
You grieve for the times when getting off the floor wasn’t a prolonged struggle, when walking any distance wasn’t met with cramps and swelling in your legs, and when jumping off playground equipment only resulted in a tingling sensation in your feet. Now, you fear even the thought of jumping on solid ground.
To me, flowers are a reminder of grief.
The Lily holds special significance in my family; it has been a part of my life for 29 years.”
