Through many years living with severe illness, I’ve come to know a lot about emotions. From the sorrow and regret of a life lived so differently to anything that might have been chosen; to the beams of happiness found in unexpected places. From the pain of feeling forgotten by the world; to the relief when … More On Gratitude and Grief
Recovery stories have been popular in the media lately. Most prominent has been actress and comedian Miranda Hart (a past supporter of this blog), sharing her experience of living with ME and Lyme disease. Her account of her illness and recovery has been widely shared across print media, talk shows and in her new book. … More The Trouble With Recovery Stories
Maeve Boothby O’Neill was a young woman with great hope for the future and a wish, in her own words, “to advance the cause of human flourishing.” She was a gifted writer working on her first novel, and a treasured daughter and sister. It is her family’s wish that she should be remembered primarily for … More Why Maeve’s Death Must Bring Change
Nearly four years have passed since the outbreak of the covid-19 pandemic. As the world fell still and silent in the spring of 2020, there were times when it seemed as though normality might be lost forever. Today the darkness of those times feels both a close and distant memory. The world is a very … More Why the Pandemic Isn’t Over for Me
We all carry narratives within us: stories about who we are and the life that we’ve lived. They shape our identity and influence our sense of place in the world. When these stories are our own, they can be empowering. But when they have been written by other people, the very opposite can be true. … More Reclaiming the Narrative: Finding the Real Me
From the darkness of the pandemic, the world is reawakening. Previously empty streets buzz with life. Friends and families are reunited, and people once again travel the world. It’s like seeing spring burst into unimagined life after the harshest of winters. Almost two years have passed since I published Life in Lockdown: What Matters When … More What It Means to Be Clinically Vulnerable in a World of Covid
Can illness and disability be overcome through the power of positive thinking? One could be forgiven for thinking so. In newspaper and magazine articles, social media posts and television programmes, a powerful message is constantly delivered: physical impairment need not be a barrier to dreams. You can be whatever you want to be. A familiar … More The Truth (and Myths) About Positivity and Determination
This summer I touched the sea for the first time in over thirty years. I sat on the shore and saw waves lap around my wheelchair. I felt the rush of sea air against my face and tasted salt on the breeze. It was magical. For a long time, I believed I would never see … More The Day I Touched the Sea Again After 30 Years
Freedom Day. It’s hard to imagine a name more starkly at odds with the reality faced by so many of us. I, along with millions of other clinically vulnerable people, have been shielding for sixteen months now. I have no idea when that will end, but it will not be today. With covid cases … More What Freedom Day Means for Those Who Aren’t Free
Life with long-term illness is uncertain. The immediate present is unpredictable; the future unknown and often frightening. When living with a body that cannot be relied upon, it takes time to reach a place of fragile equilibrium. For me, that hard-won balance has been tested over the past year. I’m not alone in being … More Seeking Peace in a World of Uncertainty
A Life Hidden 