Ehlers-Danlos Syndrome: Charlie Fitz On Using Art to Reclaim the Medical Narrative

In this episode, we talk to Ronaé Fagon, a sustainability thought leader, illustrator, fashion designer and co-founder of the sustainable e-commerce platform SlowCo. We talk about Ronaé’s experience living with a mystery chronic illness for which she’s yet to receive a diagnosis, how grinding at a demanding job contributed to burning out in 2018 and what it’s like to navigate the medical system when you don’t have a diagnosis. Follow us on socials:InstagramTiktokYoutube Get full access to Serenity Never at noralogan.substack.com/subscribe

In this episode, Nora talks to Claudia Rose Walder, a London-based editor and creative director working within the realms of styling, image direction and journalism. She is also a disability activist, model and the founder of Ablezine, a magazine dedicated to disabled and chronically ill communities, young people and creatives. We talk about Claudia’s experience living with Myalgic Encephalomyelitis, the difficulty of finding appropriate care, her creative outlets and what led her to create Ablezine.Follow us on socials: InstagramTiktokYoutube Get full access to Serenity Never at noralogan.substack.com/subscribe

In this episode, Nora talks to Matilda Ibini. Matilda is a Nigerian Londoner and an award-winning bionic, Queer playwright and screenwriter with Limb Girdle Muscular Dystrophy. Their work often centres women, disabled people, Queer people and the Black British experience seen through a magical realist lens. Today we talk about their work as a playwright and screenwriter, what it was like to grow up with Limb Girdle Muscular Dystrophy, the 90s and finding Black role models in girl bands, the Sugababes, Matilda's creative process and their play on BBC Sounds, Little Miss Burden.You can listen to Little Miss Burden here. You can find Matilda's website here. Here is a link to donate to Tonya Ingram's memorial fund.Follow us on socials:Instagram Tiktok Youtube Get full access to Serenity Never at noralogan.substack.com/subscribe

In this episode, Nora talks to Alexa Wilding, a writer, musician, and mother of two whose cancer and caregiving experience has both built community and informed her creative life. We talk about what it’s like to be a caregiver and mother of twins, dubbed on her Instagram #twinmagic, her own breast cancer experience, her writing practice and what it means to reframe resilience. We talk about the book Between Two Kingdoms by Suleika Jaouad, the writer Kate Bowler and US Poet Laureate Joy Harjo. Follow us on socials InstagramTiktokYoutube Get full access to Serenity Never at noralogan.substack.com/subscribe

In this episode, we talk to Charlie Fitz. Charlie is a UK-based sick and disabled artist, arts practitioner, writer, co-director of the remote artist studio TRIAD³ c.i.c and medical humanities postgraduate at Birkbeck, where she is a recipient of the Wellcome Trust studentship. Since becoming sick, Fitz has turned to her art practice as a meditative process, a form of disability activism, and as a means to understand and reclaim her experiences of illness and trauma. In today’s episode, we talk about Charlie’s experience with Ehlers-Danlos syndrome, her time in the hospital, and having to outsource care and fundraise for surgery. We also discuss mental health, interdependence, collective care and her art practice. Content warning: We talk about death and suicide in this episode. If you or a loved one is experiencing suicidal ideation or needs support, please reach out. Help is here for you.Charlie's InstagramCharlie's WebsiteResources: UK:  Samaritans: Call: 116 123 free National Suicide Prevention Helpline at 0800 689 5652 USA: The National Suicide Prevention Lifeline is: 988 Follow us on socials: InstagramTiktokYoutube Get full access to Serenity Never at noralogan.substack.com/subscribe

In this episode, we talk to Tonya Ingram, a poet and mental health advocate living with Lupus. During our conversation, we discuss Tonya’s experience being on the kidney transplant waiting list, the darker side of the organ transplant process and OPOs, her poetry practice, and choosing to blossom — despite the conditions of the soil. Follow us on socials:InstagramTiktokYoutube Get full access to Serenity Never at noralogan.substack.com/subscribe

In this episode, Nora talks about her illness, what happened when she went into liver failure and her subsequent liver transplant surgery. Speaking to her friend and former colleague Christine Cestaro she talks about why she wanted to start So, Life Wants You Dead, the power of community and what this show is all about.Follow us on socials:InstagramTiktokYoutube Get full access to Serenity Never at noralogan.substack.com/subscribe