In early 2019, artist Susan Aldworth put out a call for 100 embroiderers to stitch the personal testimonies of people living with epilepsy onto antique Victorian garments. The garments would be hung from a gallery ceiling by wires, programmed to move in the neural patterns and pathways associated with epilepsy, and lit by blue light and intermittent UV light. Susan’s installation is a testament to people who live with epilepsy and is part of the larger exhibition Illuminating the Self, at The Hatton Gallery in Newcastle, January 2020.

I spent time each week over a couple of months with my garment, digesting the words, planning a design, and finally writing on and stitching into the garment. I was deeply moved by the text I was given and often thought about the person who wrote it as I stitched. I felt a certain responsibility to the testimony — I wanted to do it justice. I was at first hesitant to alter the nightdress — it is likely one of the oldest objects I’ve held (aside from fossils), and certainly the oldest I’ve worked into as an artist! This was an intimate process and a long one.

Susan’s final installation is incredibly moving and inspiring. When I saw my individual piece as part of the larger installation, I was struck by a strong sense that the piece I’d sewn wasn’t mine — and never was. Not my garment. Not my testimony. Not my materials. Not my voice. Not my work. I was hands and energy and time. I was a tool to help bring those words to light: “My son Luke…” To help bring Susan’s vision to light. To play a very small part in helping bring diverse voices and experiences to light. I show images of my contribution here within that light — as a record of what I’ve done, but not as the author.

To see video of Susan’s beautiful installation, check out her Instagram @susanaldworthstudio or website.