Sarah's story

My name is Sarah Luxton, and I am 47 years old. I live in North Somerset and was 44 years old when I had my stroke. Prior to my stroke, I worked as a full-time primary school teacher. Unfortunately, due to my condition, I am unable to continue this profession, which breaks my heart not being able to teach every day.

I love to take part in craft activities. I fuse glass and have my very own ‘She Shed’ where I escape to and make my creations. I love anything crafty and will just give it a go. To me it doesn’t matter if things don’t always work out, I just like to ‘play’.

I share my home with my two beloved cats, Poppy and Willow. Also, I cherish spending time with my husband, Will, who has been an unwavering pillar of support throughout our challenging journey. We’ve been dealt a hard hand but he’s supported me throughout without any hesitation. He’s caring and understanding, yet knows precisely when to provide grounding and perspective, reminding me of how things could have been much worse.

Presently, I volunteer with the Brain & Spine Foundation (BSF) and assist Kate with the Brain and Spine Foundation Neuro Creatives group. It was through Kate’s suggestion that I’m sharing my story here.

I have Lateral Medullary Syndrome, which is the result of a tear in my brain stem. This has left me with no temperature gauge or feeling on my left side, while my right side is weaker. I describe myself as a bit of a harlequin due to the way my body responds post-stroke. The effects of the stroke manifest in various ways: muscle weakness, fatigue, eyesight issues, difficulties with swallowing and breathing, challenges with reading and writing, and occasional battles with depression and anxiety. My body’s two sides seem at odds with each other. The absence of feeling or temperature sensitivity on my left side is concerning, leading to instances where I’ve unknowingly burned or cut myself. Conversely, the nerve endings on my right side are hypersensitive, often resulting in unexplained bruises. My right eye lacks any feeling, although I can see through it, tears do not flow, resembling the sensation of having dental anaesthesia that hasn’t worn off. This inability to sense temperature restricts me from consuming very hot or cold food. I’ve adjusted my shower temperature to avoid accidental burns. The pathways within my brain seem entangled and disordered.

I experienced my stroke while at work, engaged in a chat about the Christmas party and Covid restrictions with the Head and Secretary in the school office. Initially, I felt what I presumed was a mere neck crick, not attributing much significance to it. Returning to my classroom to continue work, I felt fine for a few minutes. Suddenly, I began feeling unwell and sensed a migraine emerging. I told this to a colleague present with me. Soon after, I started slumping to my right side. My colleague offered me water, which I attempted to drink but found I had lost the ability to swallow. Panic ensued. By the time the paramedics arrived, I was unable to stand. Rushed to the Bristol Royal Infirmary, I underwent CT and MRI scans, confirming the stroke. After three weeks in the BRI and an additional four weeks in rehabilitation at The South Bristol Community Hospital, I came to terms with the fact that returning to teaching was no longer viable, which was a heart-breaking realisation.

I’ve found ways to fill my time with activities that I can cope with. Fortunately, I’ve been able to express myself and maintain good dexterity, allowing me to continue doing things I love. My ‘She-Shed’ serves as a sanctuary where I create fused glass art pieces. Whether it’s crafting mirrors from scrap glass or making Christmas-themed decorations and decorative waves, I love working on various projects.

I became involved with the Brain & Spine Foundation through searching for stroke groups. The BSF had been familiar to me from years ago when my father was diagnosed with a brain tumour. Encountering them again and seeing their online group activities sparked my interest. Initially, I was apprehensive about joining the group sessions, but after meeting the members, I felt secure, accepted, and found a sense of belonging. For about two years, I’ve been actively participating in these sessions. When Kate proposed the idea of me volunteering to create sessions, it felt like an opportunity to give back, a chance to support others. The group has been a lifeline for me; it’s a space where I can find solace and devote time to myself. As I’ve bonded with the other members, it’s evident that we share mutual respect and support one another. Despite our different challenges, during our sessions, we come together in our shared love for crafting, leaving our individual struggles behind.