Inside Martyn's Thoughts

Presence vs Participation

2026-06-28T01:30:00.000+01:00

Over the last few months I’ve written about equality and equity, accessibility and usability, independence and autonomy, and survivors and victims. These are topics that people often confuse, yet the gap between them is where disabled people live. Those gaps are important. The difference needs to be discussed. This time, I wanted to discuss presence vs participation.

I love cooking. I’m a feeder, much to Hannah’s annoyance. I went to university knowing how to make a basic pasta bake from a sauce jar and not much else. Mum had always cooked for me. Marriage forced me to learn more, although living in the shadow of a professional chef / father in law meant I never quite measured up.

Everything changed when I became a single dad and had to learn to cook properly. I bought a basic cookbook and worked through each recipe. Six years later I was confident, creative, and teaching Will through our My Little Chef series and home ed lessons. When Hannah and I started dating, she loved my cooking, but didn't eat anything spicy and was suspicious of everything, mostly due to he gluten and dairy intolerances. Cooking became part of how I cared for the people I loved. My health changed that.

When I became a powerchair user, we lowered the kitchen surface so I could keep cooking. Hannah and the kids hated cooking. I loved it. We all enjoyed the food I made. It was independence, creativity, and joy.

Recently, I’ve gone from independently cooking to being present in the process. I still prep ingredients and monitor the food. We had spaghetti bolognese, including a homemade sauce, last night by doing exactly that. Once everything was ready, my part was over. I couldn't open tins, lift saucepans, drain pasta, season as I go, hold a handle and stir at the same time, or reach over heat without risking harm. Hannah or the kids do it.

Some may argue that this is still participation. I understand why. I’m involved, contributing, and guiding the process, but participation isn’t simply being part of something. It’s equally sharing the activity, safely and independently, with those who are also participating. My role has shifted. I’m in the kitchen, but I’m not cooking. I’m present, not participating in the task.

Sometimes my presence becomes troublesome. My chair gets in the way. I move to make space. The other day I even rolled into the hallway so they could work in the small space, diminishing my presence further. I was there, but not part of the process like I was before.

This happens a lot. My graduate theology modules were in person in London, which I physically couldn’t do. A hybrid option was offered. I logged in, listened, and took notes. Yet the group discussions happened in the room. I was asked for my thoughts at the end of the lesson, but most of the time I was the face on a laptop. I was present. I wasn’t participating. My peers were shaping the conversation. I wasn’t.

It happened again in Wrexham. I wanted to watch the match in the Turf, the pub from Welcome to Wrexham. We arrived three hours before the match to avoid crowds. Wayne, the owner, stopped us from entering. He said I was welcome, but I wouldn’t be “comfortable” inside. It was standing room only. Hannah, Will, and Arty could go in. I could sit outside. I wanted the football atmosphere, but was isolated. We found a community hub down the road. It wasn’t the same, but at least I was participating in the shared atmosphere.

Disabled people understand this. We are welcomed, invited, included, and counted with good intentions, but the structures, layouts, expectations, and habits around us decide whether we participate or simply exist on the edges. Presence is easy. Participation requires thought, adaptation, and understanding.

Presence says you can be here, in this room, visible, but not much else. Participation says you can belong here, contribute, and have personal agency.

This difference appears everywhere. Churches, schools, workplaces, community groups, and social spaces often pride themselves on being inclusive. Yet the environment still assumes able bodied norms. Disabled people navigate around furniture, inaccessible layouts, accessibility issues, rigid processes, and unspoken expectations. We are present, but our participation depends on workarounds, explanations, or someone bridging the gaps.

Presence isn’t participation. Someone being included doesn’t mean they have equity within equality. This misunderstanding forces disabled people to face these barriers. Tokenism isn’t representation. Many don’t understand that.

Participation requires more. It asks people to see barriers, communities to adapt rather than disabled people adjusting themselves to fit, and institutions to move beyond visibility and towards genuine inclusion.

I don’t need to fight for presence. Most disabled people are already here. We deserve the right to participate fully, safely, and with dignity, have spaces shaped with us, not around us, and for everyone to understand that inclusion is not about being in the room. It’s about being able to take our place within it.

Presence is the invitation. Participation is the belonging. It's time we participate more.

Finally Understanding Myself: My ASD Assessment and Diagnosis

2026-06-24T01:30:00.000+01:00

Anyone who has followed my mental health posts will know the journey hasn’t been simple. I’ve shared my breakdown in 2012, the years of rebuilding, the Dependent Personality Disorder diagnosis, the slow climb back to stability, and the long process of understanding who I am. I’ve also written about communication differences, sensory needs, routines, overwhelm, and the traits I recognised in Will and James long before I recognised them in myself. It all led to this moment.

On Friday I had my two‑hour ASD assessment. Hannah and I sat online while the assessor discussed my childhood, adulthood, school life, friendships, communication, sensory needs, routines, and emotional responses, capturing everything I’ve written about for years.

We started with communication, because it’s always been the hardest part of being me. I either say too little and confuse people or say too much and overwhelm them. I accidentally interrupt because the thought arrives fully formed and I misjudge the gap, I spend hours editing and shortening text, and my friends either carry on regardless or wait for me to reach my point. Hannah even stopped me in the assessment. The irony was strangely reassuring.

We talked about childhood. How I struggled following the adults and child hierarchy. I was raised that if I didn’t know something I stayed quiet. If I did know, I spoke with confidence. Mum created guides and systems to help me function, cut clothing labels out, bought soft jumpers instead of blazers, washed my pound puppy and favourite bedding while I was at school so I wouldn’t notice, and bought a book called But Martin! about an alien trying to fit into a human school but doing everything differently. It wasn’t just a story. It was a mirror. Looking back, she did so much that I now recognise as her way of supporting my unknown, undiagnosed, and unmanaged ASD as I navigated the world.

[Image 2. The image shows the cover of But Martin!, a children’s story about a little green alien who tries to fit into a human school but experiences everything differently from the other children. The book was written to help children understand and accept difference. For me, it became a mirror—my mum used it to quietly teach me how to recognise and navigate my own differences long before I understood my autism]

We talked about sensory needs. Shoes. Textures. The way I chewed my sleeves as a child and still chew items now. How hair washing felt like needles on my scalp and how showers still overwhelm me. We talked about food too. I eat everything but I’m fussy, separating foods on my plate, avoiding ketchup touching vegetables, and refusing crisp sandwiches because the textures don’t mix.

We talked about emotions. I can recognise crying, smiling, anger, and boredom, but not always the cause, which Hannah often explains. I described emotions physically, like how anxiety, overwhelm, and sadness sit in my chest and happiness sits on my face. Hannah said afterwards that this was a common autistic trait. I never knew that.

We talked about routines. Order. Predictability. The items I still have from childhood, like my pound puppy that still sleeps with me. The writing rules the school created. The extra time given for exams. The stimming I do with my hands that Hannah notices and I don’t.

By the end of the assessment I received the diagnosis, surprising no one except the version of me that believed a misdiagnosis for over a decade.

The biggest shift is not the label. It’s the clarity. I no longer have a diagnosis of Dependent Personality Disorder with emotionally unstable traits. It makes sense looking back, as 2010–2012 were some of my worst years. I was grieving, drinking, overwhelmed, struggling, and burnt out. The traits they saw were crisis responses, not personality. The years before and after tell the real story. My childhood screamed autism. My life after thirty stabilised. I rebuilt. Masked. The personality disorder signs didn’t reappear. It was always autism.

I’ve carried the weight of being “difficult” through childhood, school, friendships, work, and even into the ordination process. People often misread me seeking clarity for attitude, overwhelm, argument, or manipulation, like the incident with the bishop. I raised discrimination concerns and the risks created by pausing the process because of my degenerative condition. I was explaining a structural problem, evidenced by the Fearfully and Wonderfully Made report, to avoid institutional harm. It was taken as confrontation. She focused on the personality disorder diagnosis and saw instability instead of a potential misdiagnosis, unlike my DDO and ADDO. I was framed as difficult when I was trying to protect myself from a historically ableist system. She even said that all she heard was “ordain me now because I am disabled.” I was communicating for clarity. I appreciate she doesn’t have the mental health training to approach this well, but it should have been handled differently. Instead she embodied the examples raised in the report and mischaracterised me because the wrong story dominating my life.

I learned to recognise the facial expressions that means “here we go again,” to shrink myself to avoid being misunderstood, or to apologise for things I didn’t do or couldn’t help. It’s something I still do. I need to do it with the bishop to move on and reconcile the situation.

This diagnosis names me, explains my life, connects to my children, and gives me the language for the things I’ve written about for over a decade. The misdiagnosis shaped how people responded to me and how I saw myself. I spent years fixing something that wasn’t broken. I wasn’t unstable. I was autistic. I finally have the language to explain it and see myself clearly.

World FSHD Day: The Day After

2026-06-22T01:30:00.000+01:00

World FSHD Day 2026 is over. Many people worldwide with FSHD, spread across countries, cultures, and communities came together for one cause. Not all 8,000, but enough to make me feel united. They shared their stories, photos, orange‑segment smiles, and honesty. I have loved it. I’m not alone.

Reading other people’s reflections mattered. The FSHD Society shared stories from across the world, each one different but all speaking with the same honesty. They talked about identity, refusing to be defined by the disease, strength, humour, and the determination to keep going. Others shared the emotional impact on families. The insecurity, grief, frustration, anger, purpose, responsibility, and the shift from passion to adaptation. Parents advocated for their children. Children advocated for their parents.

Every story was different, yet familiar. I recognised myself in their words, photos, and life, even when experiences weren't identical. We share the refusal to let FSHD become the whole story, the resilience without pretending it's easy, the way acceptance becomes strength, and how daily life turns into a series of adaptations. Within each story the same emotional, relational, and physical toll, the willingness to speak openly about vulnerability, the rejection of pity in favour of dignity, and the belief that awareness is a lifeline.

Here are the Voices of FSHD that the Society shared.

[Image 2. Esmeralda’s Story. She one of three children out of seven in her family. She reflects on how, being a sporty person, that FSHD has turned hobby to responsibility]

[Image 3. Valerie’s Story. She reflects how every day pains were symptoms. How it was a journey to acceptance and fighting it]

[Image 4. Ben's Story. Reflects and inspires, sharing that FSHD doesn't define who we are or what we can achieve]

[Image 5. Andrew’s Story. He also inspires like Ben commenting not to give up]

[Image 6. Kathy's Story. She reflects as a wife to a husband with FSHD. How FSHD impacts every aspect of life]

[Image 7. Tracy's story. She reflects on wasting time on insecurities and not embracing life as great. Live for tomorrow]

[Image 8. Erin's Story. She reflects as a mother to her FSHD child and how it affects families]

[Image 9. Colleen’s Story. She reflects on her life as a whole from work, family, and FSHD. Remembering she's not alone]

These stories reminded me that even though FSHD is rare, the experience is shared.

There were moments of kindness too. A friend and his wife joined in with an orange‑segment selfie.

[Image 10. T and K inside their house facing the camera. Its a hot day and T is not wearing a top. In both of their mouths are orange segments for the selfie spread on World FSHD Day]

James’ girlfriend, T, did as well. It’s nice that the next generation cares about awareness.

[Image 11. T is indoors, she is wearing a black top. She faces the camera posing with a orange segment for her orange slices selfie]

Three friends messaged to say I am an inspiration. It was lovely to hear. Awareness is the main point, but I do hope that my presence brings awareness. Others shared my posts, helping it spread a little further. I really appreciated that.

Rochester Cathedral also helped spread awareness by lighting their spire orange. Hannah contacted them as they periodically change the LED lighting system to celebrate occasions and commemorate causes. That meant more than I expected. A place tied to my faith, calling, and disability, illuminated together.


[Image 12. . Hannah and I are standing together at night with Rochester Cathedral glowing orange behind you. The full building and spire are illuminated, marking World FSHD Day.]

[Image 13. I am positioned in the road at night, facing the cathedral as it glows orange for World FSHD Day. The full building and spire are not visible ahead oof ms jts just the orangespire with houses around me]

[Image 14. I am facing away from the camera, looking up at the cathedral’s spire glowing orange in the dark. The focus is on the illuminated spire rather than the whole building.]

There is a harder side to all of this. Even though I'm in the top severity, I saw people who are further along than me. Some are bed‑bound, have lost arm or hand control, or can no longer keep their heads upright. Some had facial masking and myopathic facies, where facial muscles have wasted and weakened and they’ve lost expressions, or lagophthalmos, the inability to fully close the eyelids, and oral incompetence, where the mouth stays open.

I’m not there yet, but I recognise parts. I already sleep with my mouth open. I slur more now and struggle with certain letters. My resting face looks grumpy even when I am not. I’m putting more effort into smiling. I can see the degeneration beginning. The arms and legs don’t frighten me. Aids and support exists. The face and speech I'm not ready for. Thankfully, I think I'm still a good decade away from that, so I’m choosing to enjoy what I have now.

These individuals still show me that a life can be led. A story can still be told. Adventures still happen. Support is still there. Adjustments, inventions, technology, and new ways to help are constantly evolving.

The current drug trials show this.

[Image 15. An infographic explaining the current approaches in FSHD drug trials. It shows three categories: therapies that suppress or silence DUX4, treatments that support muscle growth and strength, and drugs that reduce inflammation in FSHD muscles. The graphic highlights that several organisations are working on these approaches and that some drugs are already in clinical trials.]

Some therapies try blocking DUX4, the toxic FSHD gene, by silencing or reducing its muscle activity. Others support muscle growth, helping weakened muscles cope better with the damage. A third group tries restoring immune balance by calming the inflammation within the muscles. More than twenty organisations are working on these ideas, with several drugs already in clinical trials. None of them are cures yet. There is still a lot to learn but for the first time the science is progressing, not just dealing with symptoms. That brings hope.

The science still depends on awareness. Awareness leads to funding, and funding pushes the science forward. That's where yesterday becomes harder. While those like me share our experience and voices, the conversations around it often fall silent. When I share FSHD posts the engagement drops, making support quieter. That contrast is difficult.

People want a happy news feed. Pictures of birthdays, good news, photogenic landscapes, or achievements. When I post about FSHD, even on World FSHD Day, the posts struggle.

People don’t want to see this side. It makes them uncomfortable. Without likes and comments, the algorithm swallows the post and awareness doesn’t spread. I see it in real life too. Friends and family have distanced. My life hurts too much when they see FSHD progressing. It’s easier for them. The problem is that the longer they stay away, the bigger the change. It hurts, even if i understand why they pull back.

Yesterday, people with FSHD came together, united, and raised awareness about the hardest parts of our lives so research improves and futures change. Without that awareness, our lives progress in silence.

This is why every share, selfie, message, and moment meant so much yesterday. It shows that even in something so rare none of us are truly alone. Bring on World FSHD Day 2027.


[Image 16. A orange square graphic for World FSHD Day 2026]

World FSHD Day: A 2026 Reflection

2026-06-20T01:30:00.000+01:00

World FSHD Day has arrived again. Despite posting on Facebook each year, I last wrote about it here in 2018, and looking back now is like opening a time capsule. I knew my condition and feared the future but didn’t understand it yet. I walked, even when it was difficult, constantly fell, experienced pain and vulnerability, and felt trapped in my body.

My FSHD is different now. I no longer walk. I still fall, but it’s progressed to my core. The pain, vulnerability and trapped feeling have deepened in ways I never imagined. Everything I was worried about has now occurred and I've been living with it for several years. That’s the nature of FSHD. It’s not just degeneration, but progression.

Back then, I understood muscular dystrophy in simpler terms: weakening muscles, pain, and a slow decline that no one could quite predict. The science was broad and vague. FSHD was just one MD strand that affected muscle groups, led to wheelchair use and crippling disability, and followed a personal map. After twenty years, prognosis felt like a list of possibilities where no clear pattern emerged to validate worst-case scenarios. I lived in a tension between frightening predictions and determination to carry on regardless.

The picture is sharper now, but more complex. FSHD is divided into types and understood through greater genetic understanding. With new research, rediagnosis, and advancements, we now understand why my "expected path" never matched. It's gone from rough guesses to detailed genetic explanations, even if treatment remains impossible. The progress matters. It gives future generations, including my boys, a clearer, better, and hopefully more effective future.

What is FSH Muscular Dystrophy?

FSHD affects around 1 in 8,000 people worldwide and roughly 2,500 to 3,000 people in the UK have been diagnosed with it. Most people have never heard of facioscapulohumeral muscular dystrophy until someone they know is diagnosed. People search for answers, wanting to know what FSHD is, its symptoms, progression, and what life with it feels like. It's why I write. Awareness matters.

FSHD is a genetic muscular dystrophy that weakens the face, shoulders and upper arms, then moves uniquely through the body per person. It has two types. FSHD1 is when a section of DNA is shorter than it should be, allowing the damaging protein called DUX4 to switch on. FSHD2, which I have, is when a gene that should keep DUX4 switched off stops doing its job. It's less common, more unpredictable, and severe because the faulty switch affects more areas, giving DUX4 more opportunities to activate and cause damage.

My progression started in early childhood. I was bad at races, couldn’t whistle, and struggled with calisthenics, like push-ups. By thirteen I developed a foot drop and started falling. I used a walking stick in my twenties, a wheelchair occasionally in my early thirties, and became a permanent powerchair user at thirty‑eight. By forty I couldn’t stand independently unless lifted, but my ankles or legs give way quickly. My core has weakened, my neck has slouched for years, and my face strength and speech have deteriorated. FSHD even takes your smile, which I'm finding harder to do now.

Over the last year my core began to fail. I wobble when I sit, collapse if unsupported, and struggle to stay upright. Eating is difficult because my body folds in on itself. The fear of falling has returned, the same fear I had when my legs would collapse, leaving me vulnerable again during transfers. Pain has increased. Weakened muscles pull bones and joints out of alignment. Deep stabilising muscles deteriorate. Everything strains to compensate. Every muscle and joint painfully pulses, day and night.

Despite support from my wife, family, and friends, FSHD feels isolating in a country of 69 million when only 0.003% share the deterioration, progression, and pain. I have Facebook friends across the UK but had never met anyone with FSHD in person until our church Christmas fair last year. Emma, a PTA member from our local school, recognised and asked if I had FSHD. Her dad had severe symptoms, her sister moderate, and Emma mild. She saw the posture, movements, facial weakness, and “FSHD look” from living with her dad. Meeting someone locally with FSHD was incredible, especially considering the odds against it. Her family shows the breadth and variety of this condition and reflects my experience.

This is why awareness matters. Not for pity or inspiration, but understanding, recognition, and making a rare disease less isolating. It helps those who search “FSHD symptoms,” “FSHD progression,” “FSHD1 vs FSHD2,” “FSHD life expectancy,” and “living with FSHD,” hoping for clarity in a world that rarely offers it.

Prognoses around FSHD are scary, including my own, but after thirty years, the biggest change isn't my degeneration or the shifts in diagnosis, science, and future progression. It's in me. I no longer measure my life against missed death dates, worst case scenarios, or ever-changing markers. My story sits within a wider story of disability, faith, justice, and belonging that I refuse to step out of. World FSHD Day isn't about presenting a life worth pitying so support is offered. It's helping people make a connection with the person, explore the world we live, and understand the reality behind the diagnosis.

Hopefully, this reflection helps understand the condition and me better.

FSHD’s cruellest feature is losing your smile. Each year, orange‑segment selfies are shared to raise awareness, using the colour of Muscular Dystrophy and the part of the disease that hurts the most. As my face changes and my resting expression looks more grumpy, this small act has become even more important. Today my family are joining me so every smile still shines through, and if you want to join in, you can.

[Image 2. I'm indoors, in front of a cabinet, wearing a dark green top holding a segment of orange in front of my mouth. Matching the muscular dystrophy colour orange while representing the lost smile the condition causes.]

[Image 3. Hannah is indoors, wearing pink glasses and a black top as she's holding a segment of orange in front of her mouth. Matching the muscular dystrophy colour orange while representing the lost smile the condition causes.]

[Image 4. Midge is indoors, wearing a black top, in the background is a pink cat picture. Leigh is holding a segment of orange in front of her mouth. Matching the muscular dystrophy colour orange while representing the lost smile the condition causes.]

[Image 5. Will is at college, wearing a green top and blue lanyard. He is holding a segment of orange in front of his mouth. Matching the muscular dystrophy colour orange while representing the lost smile the condition causes]

[Image 6. Arty is indoors in a green room in front of brown doors. He has a segment of orange in his mouth. Matching the muscular dystrophy colour orange while representing the lost smile the condition causes.]

[Image 7. James is outside the house wearing a white top. He is holding a segment of orange in front of his mouth. Matching the muscular dystrophy colour orange while representing the lost smile the condition causes.]

The FSHD Society are also inviting people living with facioscapulohumeral muscular dystrophy to share their stories through #VoicesofFSHD, giving space to the lived experience behind the diagnosis and helping each voice raise visibility, strengthen advocacy, and connect our global community. This post is my voice. This is me.

A Sunday That Felt Like Coming Home

2026-06-19T01:30:00.000+01:00

Some Sundays at church are work. Some are worship. This week was worship.

It’s not always easy to enjoy church when you serve there. There is always something to do, someone to speak to, and a task waiting. The Sunday before was like that. I had much needed work conversations before the service. The service itself was fine, but I wasn't uplifted. The sung worship was good and the band did well. The lead made me laugh with a story about her competitive streak when naming her childhood bear, which suited our teddy bears picnic theme.

Then I did the talk. It was the first week of the second section of our sermon series. The series started too quickly and has been difficult in places, so the congregation didn’t always understand what was shared. I felt pressure to deliver something clear. It seemed to go well and people said positive things afterwards. That was encouraging, although it was still ministry and work.

The service ended and more conversations followed. By the time I finished, I needed to leave to catch my train, which as a wheelchair user must be booked for assistance. I was disappointed because there was a picnic after church. I saw the small group eating and laughing, yet I couldn’t join them. A friend messaged later to check if I was alright as I didn’t seem my usual peppy self.

I hated that, but she was right. It was a week where I didn’t feel refreshed or renewed by church. My service was needed, but I felt drained. A few sleepless nights hadn’t helped. I was exhausted and needed an up that didn’t happen. It happens. It is part of the calling. Smile and serve. It was one of those weeks where I needed something for myself and didn’t find it on Sunday. Thankfully, I connect in other ways. I sang with my headphones on while I rolled to the station, listened to worship music, read scripture, and prayed at home, and joined my weekday study group later that week. Importantly, I knew that one week doesn’t define every week.

This Sunday proved that. I wasn’t serving. It was our more formal communion service where we don’t tend to get many families in. It’s not a problem. I love the sacraments. The sung worship was perfect. It reached the places it needed to reach. I closed my eyes, sang and worshipped. I really felt the connection. The talk was good. It continued the series and built on my talk from the week before. It felt easier to follow. The series was back on track and despite knowing the content, it’s delivery reached me in ways I hadn’t expected.

There was more. We had fifty two adults and children, not our usual thirty two regular and consistent-inconsistent members. The church felt vibrant. My children have grown into the youth group, where there's now seventeen young people aged twelve to eighteen. The children’s group has been running low on numbers with one family’s three children and two others who come occasionally. We normally have a small amount of children and youth inconsistently attending depending on the week. Being a communion Sunday, I expected fewer families, but more attended than expected.

We had teens, preteens, children, and toddlers. Eight children and three youth. It felt like a lively all age church again. The children were brilliant. They did their craft, which tied in with the series, and came up and showed the church what they had created. It made me smile and remember when my own children did that.

The fellowship afterwards was the best part. I’ve been at my church for sixteen years and for a long time I've felt like the odd one out. There is a generation above and below me who are old enough to be siblings. In some cases those above are the parents of those below. I fit right in the middle. We also have the youth, children, and generation who could be my parents. My own age group has been missing for so long.

That has changed recently. A couple, who are the same age as Hannah and me, joined with children similar ages as ours. The friend who checked on me last week is one of them. Another couple have started coming who is a lifelong friend. She wanted a friendly church that wouldn’t judge her son for his needs but if the church accepts me, Hannah, and our children, then they can accept anyone. Another couple I have known for years have been attending more since October but inconsistently due to co-parenting arrangements. The final couple have been there a while but also serve, leaving little fellowship time. This Sunday everyone arrived, with their children, and filled the church.

It was the first time I have ever felt my generation were present. I was so happy. The service was wonderful. The church felt truly all age. I was surrounded by friends and my generation. It felt like a hopeful glimpse of a growing church, active, and alive church.

I know it is not perfect. There are problems, like any organisation, activity, and family, especially since losing our priest, Rev Sue, last month, but this Sunday was different, joyful, and felt like home.

Bring on this Sunday.

Stories That Were Never Asked

2026-06-18T01:30:00.000+01:00

My dad’s eighty‑sixth heavenly birthday was last Wednesday. I didn’t mark it. I didn’t post on Facebook, visit the crematorium, post here, or even tell the kids. The words never came. I spent the day and the days after remembering him quietly instead.

Dad died in 2022, ten years after we lost Mum. Time is strange. It doesn’t feel like four years have passed, despite so much happening. We got married. I began the ordination process. My health changed. Losing Mum still feels close, but looking at James shows how long it’s been. He was fifteen months old when she died. He is fifteen years old now. Life just moves on.

I thought I would forget them or that my memories would blur. That never happened. I just wish I had more time, built more memories, and learnt more about them.

Back in February, James and I went to Canterbury for his ASD assessment. He had been struggling for months and wanted one‑on‑one time. I was happy to give it. I went to university in Canterbury. It was full of fun. Studying, nights out, pubs, girls, adventures, trouble, and the places his mum and I spent time together when we started dating halfway through my first year, even though we met in Sixth‑form. I showed him everything and the stories flowed. At one point he said, “You have such good dad lore.” It made my day.

We also talked about Mum and Dad. He said they had good lore as well. I didn’t show it, but it hurt. There is so much about them that I will never know. Some things came out after they died, but most of their lives remain a mystery.

I just didn’t care enough to ask when they were alive.

I remember being in my mid‑twenties, sitting in their garden with Dad and my uncle. A plane flew overhead and Dad said, “That’s going to Amsterdam.” I challenged him, convinced he was talking nonsense. I mean, how could anyone know where a plane was travelling to unless you were on it? Mum also had a fear of flying and of being on boats and ferries. There was no way she would have done this.

So, I asked Mum. I stormed inside, repeated the conversation, and Mum confirmed it. She had been on a national ten‑pin bowling team and travelled to compete. I knew Mum bowled when she was younger, but I never knew this. Dad went to the loft and brought down her uniform, trophies, badges, and a box of photos. I was stunned. I was in my twenties and only just learning this. What else didn’t I know? They adopted my brother when Mum was thirty‑eight and Dad was forty‑one, and then me three years later. I knew they had a life before parenthood, like we all have, but I’d never heard about this. There were decades of their life before we arrived that I knew nothing about.

Years later, after Mum died but before Dad’s Alzheimer’s and dementia fully took hold, I asked why Mum stopped flying. He told me the return flight from Amsterdam was on an old, unstable plane. They were seated apart. Mum gripped her seat the whole way, terrified she would die without Dad beside her. It was a horrible thought, but it comforts me that she eventually died with him by her side.

I now know fragments of her bowling years, but so much is missing. I don’t know when she started, how long she played, who she played with, or why she stopped. It didn’t matter then. I thought I had time. After Mum died, I still didn’t ask enough. I was recovering from a breakdown, climbing a mental health mountain, adjusting to a personality disorder, potentially ASD, misdiagnoses, divorce, learning to parent alone, learning to co‑parent, building a home school style and environment, and staying afloat. By the time I cared, Dad’s memory had gone. Forty years of their life disappeared with it.

All the questions I wish I had asked is what consumes me on anniversaries or birthdays each year. I shouldn’t be surprised. I have had half of my life erased by my parents. That doesn’t make it any easier though.

It has made me think about my own life and the stories I leave behind. I don't want my children to be in this position with me.

This blog has always had three purposes.

1. To document my life as a parent, capturing everyday moments, challenges, and joys with the boys.

2. To share my thoughts and work through whatever life throws at me, whether that’s home schooling, parenting, disability, health, general topics, or Christian and church posts.

3. To record who I am so the boys, and now Midge and Arty too, have somewhere to come when I’m gone and they want to hear my voice again.

A time capsule of my life.

So I’m starting a new weekly series, "The Stories I Leave Behind." A space to share my life. Everything I can remember or know. Almost a thousand posts exist already on this blog, but there’s still so much I’ve never written. It’s time to fill in the gaps.

Independence vs Autonomy

2026-06-16T01:00:00.000+01:00

Since college matured my writing, I’ve been revamping old blog posts, but it’s been hard seeing how my disability degeneration has stripped my independence.

Independence is important, but not as much as autonomy. Many able‑bodied people treat independence as the goal for disabled people and often misunderstand it in disability conversations. Autonomy, as control, choice, dignity, and the right to shape your own life, should be the real goal.

What do disabled people mean by autonomy?

Autonomy is the ability to make informed decisions about your own life. It’s the right to decide what support you need, how you want to live, and what gives your life meaning. It’s not about proving your ability. It’s ownership over your life. It’s the freedom to choose, to say yes or no, to change your mind, and have your decisions respected because you’re a person with dignity, not a managable task, even when support is involved.

Our wet room was recently converted and it happened then. Occupational therapy has one viewpoint. Keep the client safe, even if it removes independence and autonomy. My health sits in a fine balance between doing too much or too little physicality and exercise. I maintain my ability through creating unique “Martyn‑specific” aids and ways of staying independent. These have worked and changed over thirty years, but for OT’s they’re “dangerous” because they’re not officially approved.

Transitions are a problem. When I’m not using custom‑made aids, Hannah lifts me. This isn’t great. I’m ten stone of deadweight that lacks the muscle strength to assist her, which weakens or risks injuring her back.

I understand the OT’s want to secure me, keep me safe, have me transition safely, and keep Hannah healthy. If she injured herself, my overall care would plummet.

Their solution is a hoist. I hate the idea because they look undignified, remove current independence, and increase muscle degeneration that I’m finely balancing through my custom aids.

I’ll need it one day, but not yet. Just like I knew I'd one day need my powerchair. Throughout this wet room conversion, the OT constantly pushed it, despite me repeatedly and respectfully saying no. She didn’t listen. She wanted my health secure at the cost of my independence, which removed my autonomy.

Saying no didn’t matter. I breached their safety guidelines. After months of consultations, meetings, and the two weeks fitting the wet room, it was repeatedly mentioned. I eventually had to say, “If you mention a hoist again, I’ll kick you out of my house. I’ve been clear and you’ve constantly ignored it.” That shouldn’t have been necessary.

My independence was being framed as “pride” and my maintaining “highest achievement,” but one I had to surrender. That wasn’t the case. This is where society misunderstands independence as a moral expectation you do alone rather than a personal preference on what you can choose.

Once you’re judged to have lost independence, autonomy often disappears. People stop listening and assume support means control. Real autonomy does the opposite. It recognises that everyone needs help through different moments in life and still gives the person dignity. It’s about having the right support at the right time, guided by the individual’s decisions, not managed for them.

Autonomy isn’t isolation. It’s relational. It sits within community, responsibility, and how our choices impact others. It’s not absolute freedom. It’s freedom within the expectation that decisions are informed, rational, and uncoerced. It’s the belief that vulnerability doesn’t remove your right to choose. It’s the principle that people should be treated as ends in themselves, not as means to an outcome. It’s the understanding that autonomy must be protected by safeguards, not overridden by them.

This is where autonomy overlaps with equality and equity. Equality gives everyone equal provision. Equity gives what is needed to have the same chance. Autonomy sits firmly with equity. It recognises individuality through the variety of support, tools, or adjustments to gives the same agency as everyone else.

It also links to accessibility and usability where autonomy assures practices are usable. You can offer support, but if it removes choice, control, or dignity, it isn’t usable support. It’s a barrier dressed up as help.

This is why disabled people fight for accessible housing, personal assistants, adaptive technology, inclusive healthcare, and social care that listens. These increase autonomy without lessening independence.

College discussed this last year by highlighting autonomy as everything listed above and its importance in society, morals, and laws, like how assisted suicide and end‑of‑life care are currently debated. It showed how deeply people value control, dignity, the right to shape personal stories, and how disabled people understand this more than most.

We know what it feels like to fight for agency over our own lives. Decisions get made for us. Choices get filtered. Risks get removed. Voices get softened. Autonomy gets replaced with protection, even when it harms us.

I see it in online disability groups. Disabled people don’t need to be independent to live full, meaningful, dignified lives. We need autonomy, choice, control, support that respects us, systems that listen, and a society that understands the difference. We need to be trusted to know what matters in our own lives, to take reasonable risks, and say what we want, not what others think we should want.

Independence is a preference. Autonomy is a right. A moment when our voice and choice make a difference.

Struggling to Sleep

2026-06-13T01:30:00.000+01:00

Night often means rest. It used to mean the end of the day, the quiet moment when everything slowed down, but that hasn’t been my story for the last twenty years.

I have always struggled with pain and sleeping. Back in my twenties, despite having medication from the doctors, I would self‑medicate with alcohol, but my drinking got out of control.

Being sober now for fourteen years has meant that I’ve had to up my medication and find other coping mechanisms.

I listen to audiobooks. They are my escape. The voice becomes a steady companion as I drift off, lost in someone else’s story. Breathing techniques also help. I breathe God’s name until I find comfort and my mind surrenders. Finally, if that doesn’t help, I play the alphabet game, working through names, places, and animals through all twenty‑six letters as I hope that my body will cooperate this time.

That’s not recently been the case.

Every night begins the same way. Hannah helps me settle. Cushions, bolsters, and plush are placed around me so my legs are supported. It looks simple, but it’s a system we’ve worked out. Each item has a purpose. Each position is calculated. The goal is comfort, although comfort rarely comes. Without these, my body fights. Muscles twitch. Joints lock. Legs move just enough that any adjustment attempted increases pain rather than relieving it. Pain reminds me that rest is not guaranteed.

When that happens my coping mechanisms fail. I lie awake enough to notice every sentence of my book. My breathing, instead of pushing me into sleep, becomes a coping mechanism for the anxiety that runs through me, knowing I won’t be sleeping tonight. The techniques don’t work. I’m not drifting. I’m surviving the night.

Then there are those moments of a physical and emotional whiplash. The times when I do fall asleep, dream able-bodied dreams, and wake up to a body trapped in inaction, unable to move without help. That's so unsettling that falling back to sleep after is impossible.

Sleep is not refusal. It is resistance. My body resists the idea of stillness. The muscles that hold me together are too weak to relax. They tighten instead. The irony is that exhaustion doesn’t lead to rest. It leads to more tension. The body that cannot move cannot release. I lie there, half‑awake, half‑waiting, knowing that movement will bring pain and stillness will bring more of it.

The mental toll is harder to describe. It’s not just tiredness. It’s depletion. It seeps into thought and emotion. It makes concentration harder, patience shorter, and everything heavier. Even faith feels quieter. I still pray, although the words are slower as they become pleas for endurance and peace. Sometimes I simply say, “I’m still here.” That is enough.

Sleep deprivation changes the body. It slows recovery, amplifies pain, makes joints feel heavier, and turns small tasks into obstacles. The morning after is not a fresh start, but a continuation. The body doesn’t reset. It carries the night into the day. Tired, aching, and planning when I can rest before the day ends.

There is a loneliness in the night that is difficult to explain. The world outside is silent. Everyone else sleeps. The house feels suspended in time. I hear the audiobook, the faint noise of Hannah sleeping next to me. I count the hours, wait for Hannah to stir, and the day begins again. It’s not like I can wake her for a night‑time chat. That would be cruel. The night isolates. It turns the body into a private world that nobody else can enter.

Rest is not a position. It’s a state the body allows. Mine rarely does. Even when I take bed rest in the morning or afternoon, it’s not rest in the true sense. It’s recovery, maintenance, and the pause that lets me continue later. I’m still moving, even when I am still. Muscles twitch. Pain pulses. The body never stops working.

Acceptance helps. I have learned that fighting sleeplessness only makes it worse. I cannot force rest. I can only create the conditions for it and hope my body agrees. Some nights it does. I have a bedtime routine, use my mechanisms, and I drift off. Other nights I don’t. I have learned to take what I can. A few hours here, a short nap there, and enjoy the small victories.

There is a theological truth hidden in this. Rest is not earned. It’s given. Scripture speaks of rest as grace, not achievement. “Come to me, all who are weary, and I will give you rest.” It’s not about sleep, but being held, knowing that even when the body refuses peace, the soul can still find it. Sleep anxiety sometimes challenges that peace, although I believe it exists. It’s the quiet assurance that I am not forgotten in the hours nobody sees.

Morning comes eventually. The light through the curtains feels both relief and reminder. I made it through another night. The body is heavy, the mind slower, but I am still here. I start again. I recover. I prepare for the next night.

Sleep may never come easily again, but endurance does. That’s the rhythm of my life now. The balance between movement and stillness, exhaustion and persistence, pain and peace. The night is not my enemy. It’s simply the space where I learn, again and again, what it means to keep living when the body will not rest.

Living With Pain In A Body That Will Not Settle

2026-06-10T01:30:00.000+01:00

Pain has been part of my life for thirty years. I thought I understood it. The aches felt sharp and heavy and I believed that was as bad as it could get. I was wrong. The more my FSHD progresses, the more pain changes. It’s now deeper, constant, and woven into every part of my body.

I used to describe my muscles as feeling clamped. It was as if something pressed down on them and became tighter. The more I did, the more the clamp tightened. That image no longer feels enough. I feel every muscle now. It’s a strange thing to say, let alone imagine. I feel the painful pulse in each muscle, from finger and toe, from calves to my neck, and even when I smile. It sits inside the muscle, inside the fibres. Throb. Pulse. Deep ache. Building.

FSHD pain is complex. Research shows that people with muscular dystrophy experience a mix of nociceptive pain from strained muscles and joints, neuropathic pain from irritated nerves, and central sensitisation where the nervous system becomes more reactive over time. It explains why the pain feels layered, why it spreads, and why it doesn’t switch off.

The joint pain with FSHD is relentless. It’s a grinding ache deep within the shoulders, knees, elbows, and lower back. It builds throughout the day and settles in as if it owns the space. My knees are the worst. They feel solid and hard, as if the bone itself is heavy. The pain is sharp and deep and it doesn’t care if I’m resting or moving.

This doesn’t stop at night, despite my magnitude of medication that should help. Where I cannot move myself, the lack of movement causes its own pain. Many people with FSHD experience static posture pain or immobility induced joint stiffness. When muscle weakness limits your ability to make small adjustments, your joints carry the static weight of your body. Local circulation is reduced. Joint cartilage is starved of fluid. Pressure builds and builds.

Joints rely on movement to pump synovial fluid through them. That fluid is the body’s natural lubricant. When you’re still, the fluid stops circulating. The joint feels stiff, locked, and intensely pressurised, particularly weight-bearing joints. The ache becomes suffocating. It doesn’t fade until you’re adjusted.

Even when I am resting, my weakened muscles are working hard to stabilise my skeleton. Remaining in one position causes these muscles to cramp and lock. It creates a frozen feeling, although inside everything is straining. It’s a strange contradiction. On the outside, I’m lying quietly. Inside, nothing is quiet.

This is where the feeling of being trapped has grown. When I wrote about it before it was from a place of fear and vulnerability. Now it’s a reality. I live inside a body that will not obey me, that hurts whether I move or stay still, and has narrowed my choices to the point where even comfort negotiated.

People often assume that being in a powerchair solves everything. It doesn’t. I might not be walking, but I take the physical consequences of movement all the same. Nothing is flat and perfectly accessible. Pavements are patched, filled, and repaired. Every surface is uneven. The chair may be built and shaped for me, but I still get knocked and thrown about. My legs are strapped to stop them collapsing. My back and core cannot hold position. Every journey is a mountain of bumps and divots that make my body jolt.

Sloped kerbs are never flat. There are still two inches steps that the chair must climb and fall. My back takes the impact. My neck strains to keep my head upright. The more it strains, the more it twitches. The twitching sends pain across my shoulders. The same deep, rooted pain that never leaves. People joke about jumping on the chair for a ride as I’m lucky not to walk. My body doesn’t rest. I may be sitting, but my body is running a marathon. There is nothing lucky about it.

The straps keep my legs still, which prevents injury, but the lack of movement creates its own pain. The more I do, the more it costs. I take days of bed rest to recover. Some days I can’t so I negotiate resting hours. If I move or don’t move, pain still comes. There is no middle ground. I am either trapped in the chair with supports holding me together or trapped in a motionless body that grows pain through inaction.

Living with this kind of pain affects everything. It shapes my days and my nights. It changes how I think, feel, and move through the world. It’s the part of my life people don’t see. They see the wheelchair, smile, and presence, not the hours counting muscle pulses that refuse to be quiet.

This is my body, but I carry on regardless. Pain is constant. So is the choice in how it’s managed. Paul says (Corinthians 12:9-10) that he would boast in his weakness so that Christ’s power could rest on him. I understand it. Weakness and pain are neither failure or punishment. He’s not celebrating or hiding suffering, but recognising that in the hardest moments self-reliance isn’t enough. Living in pain strips away pretence and leaves you with reality. I didn’t chose pain, yet it’s the place where I can say who I am and how I live.

When Service Styles Clash and Church Identity Drifts

2026-06-08T01:30:00.000+01:00

I’ve seen my church grow, change, survive and thrive over the last sixteen years, but recently I've seen how fragile our identity has become when different backgrounds form and push different expectations of church and service styles. When those expectations clash with other leaders and congregation members, it splits the Church’s direction.

Preaching is a good example. People connect with different sermon styles. Some prefer expository preaching, which explains a passage in its original context. Others respond to pastoral or conversational preaching, which uses questions and reflection. Some enjoy narrative or testimonial preaching, while others prefer topical or biblical‑theology sermons that trace themes across Scripture. Visual or object‑based preaching helps some people grasp ideas more easily.

My style is a blend of expository and pastoral preaching, shaped by mini‑exegesis, narrative, and occasional visual illustrations. I begin with the text, explore its background, and offer clear application with focused takeaway points. A style I learnt through college assignments. One colleague leans toward inductive, conversational preaching, using questions and personal experience to guide reflection. Two others preach a more academic‑topical and biblical‑theology style, drawing on multiple passages, outside authors, and liturgical themes. Their sermons often attempt expository depth but rely heavily on cross‑referencing and personal interpretation, which naturally requires more time.

Mine and my colleague’s style fits a ten‑minute sermon, while the academic and biblical-theology approach needs twenty minutes to explore deeper teaching. Younger and modern congregations often prefer shorter, focused sermons, while older or more traditional members prefer longer and deeper preaching.

Our church has always had a clear identity, even when it reopened under our curate. She accepted everyone who came in, whether they were wearing their Sunday‑best with high church expectations or wore casual clothes and wanted contemporary services. Our church is a mix. It’s casual, child-friendly, with short sermons and modern worship, and maintains all key traditions that are recognisably church, but doesn’t follow Catholic‑style liturgy, multiple Scripture passages, traditional clothing, or classic hymns.

This year has shown me how easily that identity can slip when the team isn’t aligned. Our Curate was there from the start. She retired when Simon arrived, came back to officiate when he left, and a local priest guided us before moving to a different parish last year. Without a guiding priest, those with different preferences have tried to shape what they want, leading to different preaching, worship, and service styles in our leadership. None of them are wrong, but they don’t merge comfortably. The congregation feels the tension. They moan about sermon lengths, understanding what a preacher has said, being bored, feeling lectured by an old fashioned school teacher, or that songs have gone backwards to 1980s styles. We've even lost a handful young families because of it.

Various styles exist across the Church of England to create a beautiful patchwork identity under one organisation. Every church, while holding faith in God, following Jesus, and sharing the life of the church into the world, expresses faith differently. There are high traditional churches, modern casual services, conservative and liberal beliefs, and even fresh expressions like Messy Church, Skater Church, or Forest Church. Understanding these styles and where they fit within that patchwork is a key feature of the Carousel Conversations that is looked for in a person before ordination.

Understanding helps people follow a thread between weeks, months, and years, creating a community of faith around where people are, a space that begins with encounter, relationship, and context, not with inherited structures, traditions, or feeling like they’ve stepped into a different church each Sunday.

Holding that thread is difficult. I want to honour the vision we’ve carried for years, protect the identity, keep things accessible for everyone, whether new or experienced, make sure preaching helps people understand Scripture rather than feel lost in it, and recognise that identity can change and grow. This is important. Leadership needs awareness of what your congregation and community needs. Without reflective awareness, we could force an old identity to stay and miss active growth in front of us, and stop the church moving forward. It’s also not about changing the style immediately. A forced and quick style change clashes against the existing identity, loses congregation members, and misses what the community needs, which has happened for centuries throughout church history. These things matter to me.

Leadership isn’t a straight line. It’s a group of people with different experiences, training, and ideas of what church should look like and can then apply their strengths to serve their community. When styles clash, the work becomes heavier. Time and energy is spent holding things together and carrying tension than moving the church forward.

I’ve felt that recently and it’s been frustrating. I want to lead well, stay humble and aware, and honour the people who stepped up when we needed them, even if their style doesn’t match the direction we’re going in.

Leadership is about staying steady when everything feels stretched. It’s choosing patience, not frustration. It’s trusting that God is shaping us, even through a messy process. It’s about holding and carrying a church while protecting and guiding it.

I don’t have all the answers. I am still halfway through the ordination process. I’m still learning how to lead while the team is misaligned, grieving, muddling through, and surviving gauging how to speak truth without causing harm, sympathetically shining a light on issues, and balancing being assertive and combative when it’s necessary.

For now, I’m choosing to stay steady, trust the process, and believe that opportunities to challenge it will occur. Churches grow through tension and peace. It’s uncomfortable, but it’s shaping us. It’s shaping me.

A Positive School Meeting

2026-06-04T01:30:00.000+01:00

Two weeks ago I wrote about an incident with a staff member at Arty’s school. A week later, after my complaint, I met with the Head teacher. It wasn’t the best day. Miss L, offered to move the meeting but I wanted it done.

My nerves weren’t just about Arty or what happened that morning. After eighteen months of fighting for James, I knew school meetings can turn against you fast. I’ve watched schools hide mistakes rather than fix them. I’ve seen the system break my child. Those experiences entered this room with me.

This meeting felt different. They had a staff member take notes because I cannot. That alone was a small victory after everything that happened with James’ school.

We started with Arty. Four years of school and negative behaviour patterns meant this wasn’t unfortunately a new situation for him, despite him being significantly better now. We reviewed his four exit passes for movement breaks, regulation time out of class, sensory uniform adjustments, and early exits to avoid crowds. The last one was the one that caused the incident. Four passes are too much. If staff cannot understand them, how can he? I suggested a two‑card system. Yellow for school‑based actions. Red for dysregulation. A simple system that helps staff respond and keeps Arty accountable too. Miss L liked the idea but will speak to the SENCO.

Then we moved to the phone call.

Miss L apologised. Their calls are recorded for staff safety, accountability, and training. She listened to the call and was not happy.

She explained the school policy. If a call becomes difficult, staff must stop and book a meeting with the parent and the child’s head of year. This didn't happen.

The staff member asked for my wife. She didn’t acknowledge me answering instead of Hannah, but launched straight into her agenda. No greeting, no recognition of who she was speaking to, and no awareness of my disability, Arty’s profile, or his exit passes.

The Head heard me respond politely saying, “Miss, I have listened to you. Can you let me finish my sentence?” She heard me say “Miss” repeatedly while her staff member cut off me again and again, escalated the situation, ignored my attempts to ground the call, patronised me, and said “ok” when I asked for senior staff, as if she was untouchable. Miss L heard my distress and how it grew. It wasn’t ok. There was no empathy or apology.

She said the call broke school policy and staff expectations. She didn’t say it broke the SEND Code of Practice, but she didn’t need to. I said it in my complaint. She knew it.

I gave four possibilities to why it happened.

1. Implicit ableism (I experience this daily).

2. Gender bias (As Dad I’m not the regular parent that discusses Arty).

3. Power imbalance (Staff vs parent)

4. A combination of any and all above.

Miss L nodded at the power imbalance. It was possible, but I asked her to ask one question. Did she know I am disabled? If she did, then ableism is part of this, whether complicit or implicit. If she didn’t, then she failed in her pastoral role to Arty and in her actions to me. Either answer is bad.

The head then raised something I didn't know. This staff member never contacted a senior staff member to call me. I waited all day before sending my complaint in, I sought a fair process, but nothing happened. Miss L wasn’t happy. She praised me for my patience and how my experience as an ex-teacher helps them. I hold them to best practice. This was nice. I have always found it difficult to balance the role. I see what they should do, but as a parent, I see too much of what they are not doing.

She was right. If Hannah answered, Arty would have had a detention. No one would know the staff member mishandled the situation and the phone call or that the policies and profiles were ignored. I, however, know what should happen and what was wrong. This allows them to improve.

So, what now?

I asked for specific outcomes. The staff member needs Disability‑informed training, policy training, pastoral training, and a review of how this was handled. I wasn’t seeking her to be sacked, but I asked for this to be recorded on her file. If it happens again, a pattern forms. Miss L agreed. She also wants to arrange another situation between her and me to see if things are handled better. I am weary. I also asked for all staff to be reminded of Arty’s profile. He’s a young carer and child who deals with my health. A bad day for me means a bad day for him. Staff should know this alongside his SEN profile and family history.

Miss L then surprised me.

She wants the staff member to write a written apology. The type of apology that they expect from a child when they have done wrong. She also wants to use the call recording in staff training and address and shine a light on the wider issue of rushed calls that create unhealthy conflict.

Half term has passed. I expect the written apology, transcript, and a way forward to be here soon. When it arrives, I will update you. For now, this was a productive and positive school meeting.

Living With Photosensitive Skin: When Sunlight Turns Against You

2026-06-02T01:30:00.000+01:00

I have written about almost every part of my body and health over the years. I have covered ASD, various diagnoses, mental health struggles, FSHD at every stage, disability, harm, thirty years of lived experience, and even personal battles like alcoholism and staying sober. Yet somehow, I have never written about the one condition that has followed me quietly through most of my life. It affects me all year round, although far more in warm weather. Polymorphic Light Eruption.

[Image 2. A patch of skin with redness and small raised bumps. The area looks inflamed and irritated, showing the typical reaction pattern of my photosensitive skin condition.]

[Image 3. The back of my hand shows multiple small red spots and bumps. They vary in size and appear inflamed, representing how the condition affects exposed areas like my hands.]

[Image 4. The back of my neck and scalp area show redness and irritation with small raised spots. This is one of the most sensitive areas when my photosensitivity flares.]

[Image 5. A close view of irritated skin showing redness and scattered bumps. The uneven colour and raised spots highlight the inflammation typical of polymorphic light eruption.]

[Image 6. A close view of my arm with scattered red bumps and areas of irritation. The skin shows mild inflammation and uneven tone, which is typical of how my photosensitive skin condition appears on my arms.]

These red bumps, spots, blisters, and patches of irritated skin have been with me so long that I do not remember when it started.

My first clear memory of it was a trip to Margate when I was twenty. I was sunburnt, peeling, uncomfortable, and covered in bumps across my hands and arms. They were angry, raised, and impossible to ignore. Nothing helped. I may have had it earlier, but that was the first time I remember thinking, “This is not normal.” I am forty‑three now. That was a long time ago.

The pattern has stayed the same. Red, thick bumps and spots. Small blister tops that ooze clear, sticky liquid when they are popped, scratched, or accidentally caught. Swelling. Heat. Itching that wakes me up. I try not to scratch, although I do it in my sleep. The photos above were from 2020, and they were not even the worst. They were simply the ones I captured on a day they were inflamed.

The condition is a form of photosensitivity, like polymorphic light eruption (PMLE). PMLE is one of the most common reactions to sunlight. The skin becomes hypersensitive to UV light, even in small amounts. It can appear as red bumps, spots, raised patches, or blisters. The clear fluid is serous fluid, something the body produces during inflammation. It is unpleasant, although normal for this kind of reaction.

What makes it harder is that it does not only happen in summer. I get it all year. Heat makes it worse. Even travelling in a car with sunlight hitting one small area can trigger a flare. UV‑A light passes through windows, so “not being in the sun” does not protect me. My hands and neck are the worst, although it appears on my forehead when I am not wearing a hat, on my arms when they are exposed, and anywhere that gets direct sunlight.

Clothing becomes a strategy. I do not wear shorts or T‑shirts. Covering my body is the main plan. Jeans are my balance between warmth and coolness, especially when I am in my powerchair and my legs do not move much and a breeze hits them. Long‑sleeved cotton shirts are my best option. They cover my arms, keep me cool, and protect my skin. Cardigans are impossible in this heat, although if it is sunny and cooler, a thin cardigan can help. Sun cream helps, although it has to be high, like the factor 70 I am using. Aloe vera and Cetraben soothe the skin, reduce itching, and calm the most swollen areas. I do what I can, as often as I can.

Living with FSHD means I already balance my days carefully. Adding this condition makes everything harder. It is not the same as my muscular dystrophy pain. I am used to that. I know how to sit, adapt, and manage it. This is different. This is the kind of discomfort that gets under your skin, literally and emotionally. It is like earache or toothache. It is small, but relentless. It becomes a nuisance and an irritant. Pain is pain. Everyone has their limit. I never compare one person’s struggle to another’s. I measure by tolerance, and this tests mine. Anything that anyone has to go through that is not part of their daily battle is always worth acknowledging.

The medical explanation is simple. The lived experience is not. Photosensitive conditions can flare with:

• UV exposure

• heat

• sweat

• friction

• stress

• certain medications

• reflections from water or glass

They can appear hours or days after exposure. They can last for weeks, can scar, and disrupt sleep, routine, and confidence. They can make you feel like your own skin is working against you.

This is why I wanted to write about it now. Not because it is new, but because it has been part of my life for so long without ever being spoken about. Most information online is medical rather than lived experience. It is important that I document it. These bumps and blisters are not dramatic. They are not life‑threatening. They are not the headline condition in my story. Yet they shape my days, my clothing, my comfort, and my choices.

I live with a progressive muscle disease and disability that causes chronic, daily pain, although I also live with this. It is time it had a place on the page.

Accessibility vs Usability

2026-05-30T01:30:00.000+01:00

People often believe that if a space is accessible, it must be usable. These words sound similar, but they do not mean the same thing. Accessibility is the presence of something. Usability is the ability to use it safely, independently, and without barriers. The difference becomes clearer when you live with a disability and spend your life navigating the gap between the two.

The Equality Act entered UK law in 2010 and brought more than 100 separate pieces of legislation into one framework. Sixteen years later, the world can feel more accessible and inclusive. New buildings must be legally accessible. Old buildings must make reasonable adjustments. Although some skirt around what “reasonable” means, I have seen many thoughtful adaptations added to historic and listed buildings without fuss. This was especially true when Hannah and I took on our accessibility challenge to make Rochester more accessible in 2020.

Yet systems can look accessible on paper while remaining unusable in practice. Policies, roles, and the language of inclusion often create a polished surface that hides deeper barriers. When power sits unevenly and conformity is rewarded, accessibility becomes a performance rather than a reality. Even soft‑power spaces, like friendly rooms, pastoral tones, reassuring words can disguise pressure. They sound gentle but often guide disabled people toward compliance instead of collaboration. It is the difference between being invited in and being allowed to participate, equality and equity, and accessible and usable.

Last Sunday I was preaching at church. The service was shaped by grief after the sudden loss of our Curate, Sue. Many of us were mourning. I had to hold the space, preach pastorally, honour Pentecost, and link it to our current series. I struggled to write something that felt right. The service and the balance mattered.

When I arrived, the chancel was set for able‑bodied leaders. A table had been placed for the congregation to light candles in Sue’s memory. The lectern and mic stand were positioned where able‑bodied preachers stand. My ramp, which I bought so I could reach the chancel and lead like anyone else, was brought out, but it became obvious that I would hit everything. The ramp gave me access. The layout removed usability.

I asked for the table to be moved back more than once. Each time I explained why. Each time the team struggled to see the problem. The lectern had to be moved to the opposite side because my wheels would catch the tripod legs. Logic vanished. I had the equipment out. I should have been happy. Accessibility was present. Usability was not.

A few days later I was at our fortnightly coffee morning. I sat with a group of people who all live with different disabilities. We spoke about the Diocese Enable Team, the new disability office, my advocacy, this blog, and the difference between equality and equity. Many believed we were already an inclusive and accessible space. I understand why. Over fifteen years we have made huge progress: a toilet with disability supports, custom metal ramps replacing old wooden ones, a bridge ramp for the bell tower, and the foldable ramp for the chancel. We are careful with touch and physical contact. I held coffee mornings for disabled people and carers. The church has twenty‑seven disabled children and adults. I have pushed for change for a long time.

This is all amazing. The church is accessible, but that does not mean it is usable.

The toilet corridor now stores stacked chairs, making the turning circle tight. The kitchen counter is high, which means hot drinks are lowered down towards my face. The cake and biscuits sideboard is blocked by tables and chairs. Even if I reached it, the depth means I cannot access anything at the back. I navigate my chair around furniture, pillars, and people while holding a hot drink. Most weeks someone makes my drink and brings it to me. They tell me what cake is available. They serve me. This is kind, welcoming, and inclusive. It is not usability. It is a workaround. An unspoken reasonable adjustment in an unusable space.

Then came Thursday when I went clothes shopping. Some shops were accessible but not usable. One had a ramp so steep — around a 50 to 60 degree angle — that going down felt unsafe. Going up pushed me sideways. If a plant box stand had not been there, I would have fallen. The staff were confused because the ramp “worked for buggies.” It took all my strength not to roll my eyes. I hate wheelchairs being compared to buggies. The ramp showed they had considered parents with prams, which is good, but their idea of accessibility centred on a group that is not disabled. It was accessible for buggies and maybe manual wheelchairs if being pushed. It was not usable for powerchairs or those with walking issues.

They were kind and meant well, but didn't understand. It was my knowledge of Rochester, the 2020 accessibility campaign, the shops with ramps, and which ramp belonged to which shop that solved the problem. They ran to the comic book shop, borrowed their ramp, and it worked exactly as I said it would. I would have been stuck there otherwise.

These examples highlight the difference between accessibility and usability. Accessibility is the presence of a ramp, a toilet, a lift, or a space. Usability is whether a disabled person can use it safely, independently, and without relying on others to bridge the gaps. Accessibility is a tick‑box. Usability is lived experience. Accessibility opens the door. Usability lets you through it.

Most places aim for accessibility. Disabled people, unfortunately, live in the space between the two. Usable spaces should now be the aim.

A Pentecost Study: Wind

2026-05-29T01:30:00.000+01:00

A Pentecost Study: Part 3 - Wind

“Suddenly a sound like the blowing of a violent wind came from heaven and filled the whole house where they were sitting.” (Acts 2:2)

Wind is one of the oldest and most mysterious images of God’s presence. In Hebrew, the word ruach means wind, breath, or spirit — the invisible movement that gives life. In the beginning, the Spirit of God hovered over the waters (Gen. 1:2), stirring creation into being. Later, God breathed into Adam’s nostrils the breath of life (Gen. 2:7). The same breath that moves the air also animates the soul. Wind is not seen, but its effects are felt — it moves, fills, and transforms.

Throughout the Old Testament, wind often marks divine action. It parts the Red Sea (Exod. 14:21), brings rain to the dry land (1 Kings 18:45), and carries the voice of God to prophets in the wilderness. Sometimes it comes as a whisper, sometimes as a storm. Even the very name of God — YHWH, often vocalised as Yah‑weh — moves like breath through the lungs. Ancient teachers noticed that the name itself sounds like inhaling and exhaling: Yah on the in‑breath, weh on the out‑breath. God’s name was heard not only in words but in the wind moving through mountains, deserts, and human bodies. The breath of life was the breath of God.

In the New Testament, this image deepens. Jesus speaks of the Spirit as wind: “The wind blows wherever it pleases. You hear its sound, but you cannot tell where it comes from or where it goes.” (John 3:8) After the resurrection, He breathes on His disciples and says, “Receive the Holy Spirit.” (John 20:22) Breath and wind become one movement — the life of God entering human lungs, the divine presence animating human hearts.

At Pentecost, this breath becomes a storm. The sound of rushing wind fills the house, sweeping through the gathered disciples. It is creation happening again — the Spirit breathing new life into the world. The same breath that formed Adam now forms the Church. The same wind that carried God’s name across the hills now fills the upper room. It is as if the disciples hear Yah‑weh move through the space — the living name of God filling their lungs and their courage. The Spirit’s arrival is not gentle air but holy power, moving through ordinary people and sending them out with voice and boldness.

So what does that mean for us today?

We live in a world that often feels breathless — hurried, anxious, exhausted. We hold our breath through stress, fear, and uncertainty. Pentecost reminds us that the Spirit still breathes. The wind of God still moves through closed rooms, weary hearts, and silent prayers. It fills what feels empty and revives what feels lost. The Spirit’s wind is not a storm to fear but a breath to receive.

Sometimes the wind comes as renewal — a fresh start, a clearing of the air. Sometimes it comes as rest — the quiet inhale and exhale of grace. Sometimes it comes as calling — pushing us gently toward what God is doing next. Many Christians pray with the rhythm of God’s name: breathing in Yah and breathing out weh, remembering that every breath is a gift of the Spirit. The wind of God is always life‑giving, never life‑taking. It is the breath that carries us forward.

Wind is not a feeling. It is a movement. It is the way the Spirit breathes life into creation and into us.

A reflection

The wind of God is the breath that never ceases. It moves through creation, through history, through us. It is the Spirit’s whisper that revives what is weary and awakens what is waiting. Pentecost wind is the breath of new life — invisible yet undeniable, gentle yet powerful, the living rhythm of God’s presence.

Questions

1. Where have you felt the Spirit’s wind or breath — in renewal, rest, or calling? How did it move you or change you?

2. What parts of your life feel breathless or still, and how might you open yourself to the Spirit’s movement there?

3. As Pentecost continues, what would it look like for you to breathe deeply of God’s Spirit — to let His wind fill, guide, and carry you into new life?

A prayer

Spirit of life, You who breathe creation into being and fill the world with Your wind, breathe on us again. Where we are weary, refresh us. Where we are fearful, steady us. Where we are silent, speak through us. Fill us with Your breath and send us with Your wind, that we may live and move in the rhythm of Your grace.

Amen.

If you would like to read Part 1 and Part 2, please click on the links.

When Your Core Gives Way

2026-05-27T01:30:00.000+01:00

Living with a progressive condition teaches you to recognise patterns, the shifts, changes, the way FSHD reshapes strength, posture, and movement. I have written about the years of falling, pain, feeling trapped in a body like this, the early arm weakness, the journey into mobility aids, the fear of using a chair too early, the misdiagnoses, the institutional barriers, and becoming a full time powerchair user. Despite all the years and the ever evolving health, my rare condition continues to surprise me as the FSHD world keeps progressing.

My lower back and core strength has begun to fail. It feels like the old days when my legs used to give way. My back twitches. It shakes with a weakness that screams through the muscle. A weakness I recognise, but not the location. I wobble when I sit. I slouch more. My body cannot hold a structured frame.

It has become noticeable eating dinner, getting dressed, lifts, transfers, in the shower chair and on the toilet. Places where I should feel secure. Where I have felt secure before.

I am blessed with equipment. I have a Vertica Lift Seat over a Gerberit Aquaclean. The riser has been with me for years. The Aquaclean is new. We converted the bathroom into a wet room and it made sense to keep everything in one place. The problem is the toilet itself, where the back is larger. The riser fits, but the space behind is further back to fit the functions. If I lean even slightly, I collapse into that gap and against the tank. I cling and hold on. My back twitches. I brace in case I fall.

[Image 2. A modern bathroom showing a toilet fitted with a Vertica Lift Seat over a Gerberit Aquaclean system. The riser includes padded handles to support safe transfers and sits within a white, marble‑patterned wet‑room. Storage shelves hold hygiene items, and a tall bamboo plant adds warmth to the space.]

[Image 3. A modern bathroom showing a toilet fitted with a Vertica Lift Seat over a Gerberit Aquaclean system. The riser includes padded handles to support safe transfers and sits within a white, marble‑patterned wet‑room. Storage shelves hold hygiene items, and a tall bamboo plant adds warmth to the space.]

It mirrors getting dressed and undressed. Pulling a top over the head is sometimes just enough to knock me off balance. I think the fact that my arms are restricted makes that worse. I can't hold on. I can't secure myself.

In both scenarios, that old falling anxiety hits, like the days when falling was a weekly expectation. Weekly was optimistic. If I fell once, the chance of another increased. When I transitioned to a wheelchair, that fear stopped. I was safe. I shouldn’t fall again. My mind regained security. Losing it now feels like stepping backwards into an old fear I had outgrown.

The shower chair is worse. It is supposed to be a toilet and shower chair. I have no idea how people sit comfortably on it. My muscle loss means I feel like I am sinking through it. The plastic back is easy to clean but not structured. A push forward pulls me back. A push back throws me forward. My core cannot counter the force. The fear of face planting is real.

[Image 4. A shower chair designed for toileting and washing. It has a grey open‑centre seat, padded armrests, large rear wheels with light green tyres, and smaller front casters. The white frame includes footrests at the front. The chair sits in a wet‑room with marble‑patterned walls, a shower hose, and a hanging sponge.]

Eating has become difficult. I have gained weight since becoming a powerchair user. Less movement does that. I try to eat less or when I am hungry rather than at set times. I think it’s working. The MD belly distorts it, so judgement is difficult. However, where my body slouches, it squashes my stomach. I sit down hungry. I raise my hand as high as I can. My head drops to meet the fork. My back curves. My neck arches. I feel like a crumpled ball. My appetite soon goes. I'm full.

This also affects every day transfers. When Hannah lifts me, it resonates deep inside. I grip, cling, shake, and hold on because I don’t know which way I will fall. Every slide and moment where I need my body to hold itself for even a second. Then the tension and wobble return. I worry I will fall back, fall forward, hit the car door or the floor. I hate that the fear has returned.

I am not even sure what has caused this shift. It could be natural progression. It could be years of relying on a powerchair that holds my posture for me. It could be weight changes. It could be the slow weakening of deep stabilising muscles that FSHD is known for. Many people with muscular dystrophy, MS, spinal conditions, or EDS describe similar stages. Some lose the ability to sit upright. Some develop scoliosis. Some experience nerve pain, spasms, or the crushing fatigue that comes when the core stops supporting the rest of the body. Others talk about diaphragm weakness, rib instability, or the way chronic slouching reshapes the spine. These stories are common online. They are shared quietly in forums, support groups, and disability communities. They are rarely spoken about publicly. It’s an uncomfortable topic.

The pain is part of it. For me, it’s a deep, dragging ache that sits in my lower back, while my front feels weighted and pulls everything forward. The typical “MD belly” as the 2020 photo below shows.

[Image 5. A side‑on photo from 2020 showing your torso, highlighting the curved spine and the typical “MD belly” associated with muscle weakness. You are standing indoors wearing red shorts. A shoe rack, wall dispenser, and door storage basket appear in the background.]

My back feels stretched and compressed. My stomach crushed. My breathing feels heavier when I slouch. My shoulders sag. My neck strains to compensate. It cascades. One muscle to another. It worries me. It feels like the start of a stage I thought I had already lived through. A stage I believed I had left behind when I stopped falling.

This is the reality of progression. It is not dramatic or sudden. It is a quiet shift that changes everything. It is the moment you realise that the muscles you relied on have stepped back and FSHD has stepped forward.

This is what living with FSHD and the top severity looks like. It’s not one story. It’s the journey and constant renegotiation of what your body can do.

This is the next chapter.

Stepping Into Disability Communities

2026-05-23T01:30:00.000+01:00

I have spent most of my life disabled. Thirty years of muscle loss, pain, fatigue, and the slow shift of what my body can and can’t do. Thirty years of adapting, slowly deteriorating, and surviving. A life my children have grown up around. Yet I’m not part of any disability community outside the one we've built at church. Not properly.

I have changed that recently. My faith, knowledge, ministry, and life have grown. I am halfway through the ordination process. I’m shaping my calling and building a disability ministry. I have learnt more about disability theology, disability law, the Equality Act, SEN law, the difference between equality and equity, and the lived experience of disabled adults and children. I have been advocating for years, writing openly, and supporting others, but something shifted. I needed to go deeper and belong somewhere that understood my world.

I joined lots of Facebook groups for FSHD, Muscular Dystrophy, World FSHD news, wheelchair users, accessible places and holidays, keep fit and healthy living, disability theology, disabled families, and fellowship. Spaces where disabled people gather, talk, cry, laugh, and survive together, discussing many different types of institutional harm.

You would think I would have done this years ago. I didn’t.

I grew up in the 90s. It was a different world. My Mum pushed me to be more. Do more. Become more. Disability was something I had. A part of my being. I had to prove myself before I “died at sixteen.” I went to school, Sixth‑form, Uni, work, and created a family to show I was more than my condition. It was the right method for a teenage boy in that exclusive decade but I built internalised ableism that I am still unpicking.

I learned to survive. I minimised, pushed through, hid parts of my disability that made others uncomfortable, hid parts that made me uncomfortable, accepted scraps of accessibility, navigated a world that wasn’t built for me, and accepted that sometimes you take the only option you have, even if it isn’t good enough.

Joining the disability groups has not been easy. I read posts filled with pain. Often finding physical pain in every thread. The recognisable aching, throbbing, and pulsing pain that makes touch unbearable. The painful recovery after physiotherapy that for many doesn’t help. The fear of losing more muscle, falling, and waking up weaker than the day before. I know that pain. I live it. I also see pain I don’t know. Pain that reminds me that suffering is always personal. People deal with pain so differently that something one person can easily deal with, another finds excruciating.

There is psychological pain too. The waking from an able‑bodied dream. The pain of being stared at, judged, belittled, patronised, dismissed, spoken over, and silenced. The pain of feeling like a burden and being treated as anything except a person.

It is hard, especially on the days I feel like that too. Seeing ableism across many corners of the world can sometimes feel so overwhelming. Reality is often difficult to swallow. My condition is degenerative. I’m losing muscle and function. I am in the top one percent of severity. Seeing others further along the path is difficult. It worries me.

Maturity, however, has changed my outlook. People often search for the question, “What is the difference between a disabled person and a person with disabilities?” The last few years have helped me answer it.

[Image 2. This visual contrasts identity‑first and person‑first language in disability discussions. The left side, ‘Disabled Person,’ highlights empowerment and community through the social model of disability. The right side, ‘Person with Disabilities,’ emphasizes individuality and dignity before condition. Both sides feature wheelchair users, illustrating the shared humanity behind different linguistic perspectives.]

A disabled person sees disability as part of identity and community. Empowered by the social model of disability. A person with disabilities sees disability as one aspect of self. Centres individuality and dignity before condition. It is a person‑first or disability‑first mentality within identity politics and understanding.

I was raised believing being a disabled person was wrong. I pushed and fought to prove I was a person with disabilities. I no longer believe that. Both identities are valid, real, lived, and deserve respect.

The top trump comparisons are frustrating though. The “I had a bad night” followed by “I haven’t slept in three days.” The “I have new medication” followed by “I take eleven tablets a day.” The constant reminder that someone always has it worse feels at times like wallowing. Yet, it is the reality of how identifying as disabled first can consume every moment for some, but not all, disabled people. It used to frustrate me. I understand it now as the only language some people have.

I needed to step into this world, learn, listen, and understand the people I feel called to serve. When I’m ordained I want to support disabled people more. Someone needs to sit in the mess with them. To truly advocate you need to hear the stories that break people open. I can’t build accessible spaces if I don’t understand what makes spaces inaccessible in the first place.

These groups help me grow, see, and understand the depth of need, harm, resilience, and faith that many disabled people carry. Life that survives pain, injustice, exclusion, and the world as it is.

It is not easy. I will keep building on it. I will learn, show up, step into community, and shape a ministry that reflects who I am as a disabled man and a man with disabilities. All of it held together.

A Pentecost Study: Fire

2026-05-22T01:30:00.000+01:00

A Pentecost Study: Part 2 - Fire

“Divided tongues, as of fire, appeared among them and rested on each of them.” (Acts 2:3)

Fire is one of the most powerful images in Scripture. It is never merely decorative. It reveals, purifies, guides, judges, warms, and transforms. In the Old Testament, fire is often the sign of God’s holy presence. Moses meets God in a bush that burns but is not consumed (Exod. 3:2). Israel is led through the wilderness by a pillar of cloud by day and a pillar of fire by night (Exod. 13:21). When the covenant is made with Abraham, God passes between the pieces as a smoking firepot and blazing torch (Gen. 15:17). Fire marks God’s nearness—dangerous, beautiful, and alive.

Fire also purifies. The prophets speak of God as a refiner’s fire, burning away what corrupts so that what is true may remain (Mal. 3:2–3). Elijah calls down fire on Mount Carmel, not as spectacle but as revelation—God answering, God exposing, God calling His people back (1 Kings 18:38). In each moment, fire is not destruction for its own sake but the fierce love of God making Himself known.

The New Testament continues this imagery but gives it a new centre. John the Baptist promises that the Messiah will baptise “with the Holy Spirit and fire” (Matt. 3:11). Jesus speaks of a fire He has come to bring to the earth (Luke 12:49). Fire becomes the symbol of God’s transforming work—burning away what is false, igniting what is true, and empowering what is weak.

At Pentecost, this imagery reaches its fullness. The Spirit comes not as a gentle breeze alone but as wind and fire. Tongues of flame rest on each disciple, not consuming them but commissioning them. This fire does not destroy; it empowers. It does not burn them up; it lights them up. The same God who appeared to Moses now appears to ordinary people—fishermen, women, tax collectors, the fearful, the uncertain—and sets them ablaze with courage, clarity, and calling.

Pentecost fire is not about spectacle. It is about transformation. It is the fire that turns locked‑room disciples into bold witnesses. It is the fire that melts fear, kindles hope, and warms cold hearts. It is the fire that spreads—not by force, but by lives illuminated with the presence of God.

So what does that mean for us today?

We often imagine fire as something dangerous, something to avoid. Yet the fire of God is not reckless. It is purposeful. It burns away what diminishes us—shame, fear, bitterness, apathy—and ignites what reflects Christ—love, courage, compassion, truth. Many of us carry embers rather than flames. We feel tired, stretched, or dimmed by the weight of life. Pentecost reminds us that the Spirit does not demand we generate our own fire. The Spirit brings the fire.

Sometimes the fire comes as conviction, naming what needs to change. Sometimes it comes as comfort, warming what has grown cold. Sometimes it comes as courage, pushing us into conversations, forgiveness, or acts of love we would never choose alone. Sometimes it is simply the quiet flame that refuses to go out, even in the dark.

Pentecost fire is not a moment to admire but a gift to receive. It is the Spirit’s work in us—slow, steady, holy—shaping us into people who carry God’s presence into the world.

Fire is not a feeling. It is a transformation. It is the way the Spirit refines, empowers, and sends us.

A reflection

The fire of God does not consume us but completes us. It burns away what cannot bear the weight of love and kindles what reflects Christ. It is the holy warmth that steadies us, the refining flame that purifies us, and the quiet light that guides us. Pentecost fire is the gift that turns ordinary lives into living signs of God’s presence.

Questions

1. Where have you experienced the fire of God—through conviction, courage, healing, or a renewed sense of purpose? What did that moment reveal?

2. What might the Spirit be seeking to burn away in you, and what might the Spirit be trying to ignite—gifts, compassion, boldness, forgiveness, or hope?

3. As Pentecost continues to unfold, what would it look like for you to welcome the Spirit’s fire—not as destruction, but as transformation?

A prayer

Holy Spirit, You who came as fire, kindle in us the flame of Your love. Burn away what dims our faith, warm what has grown cold, and ignite in us the courage to live as Your people. Refine us, empower us, and send us into the world as bearers of Your light. Make our lives a living flame of Your presence.

Amen.

If you want to read Part 1 and Part 3, please click on the links.

When a Life Shapes a Church Home

2026-05-20T01:30:00.000+01:00

Yesterday we lost a good friend. Our vicar. Our steady presence.

It happened on James’ fifteenth birthday. That detail sits heavily today. It marks the year I started attending our church and being under her wing. It marks the years she has shaped our family and my journey.

I met her before Will was born, back when I attended our sister church. She was newly ordained then, and finding her feet. Her sermons needed polishing. Her confidence needed time. She had the heart, such a massive heart for God, that never needed work.

She was given the chance to open our church as a small church plant. Building something from nothing is a massive achievement. She would insist it was God, not her. Six weeks after James was born my marriage fell apart. Everything shifted. I was told to move to the new church to ease the social strain I was under. I went. Fifteen years later, I am still there. All because of her.

In those early days a friend and I led worship. He played guitar. I played keyboard. Then my mum died. My mental health spiralled. I stepped away. She didn’t let go. She stayed in contact. She told me to lean into my church family. I couldn’t see that family then. I was hurting, avoiding people, and trying to survive.

I wanted to return to church when I stabilised. By then it was open weekly. We went back. We never left again. It became home.

She welcomed me and the boys. She welcomed the noise, meltdowns, and moments that come with undiagnosed little worlds. Every service began with the same line. “Don’t worry if your children make noise. We welcome all children here.” She meant it. We felt it.

Every birthday the kids had a card and chocolates. “From Sue and [her husband] and your church family.” A small gesture that mattered more than she knew. She even came to celebrate James’ birthday one year. She knew my friendships had cracked under the weight of my health and that things with dad were difficult. She showed up anyway. She always did.

She came when dad died. My brother had his family filling the crematorium. I had Hannah and the kids. I thought I would stand alone. I didn’t. She came with two other leaders. She embodied the truth she lived: church family is more than words.

Bereavement was her ministry. She understood loss. She held people through it. The pain today is knowing she’s not here to guide us through losing her. She would have known exactly what to say and do.

It was our pleasure for her to marry us. She made our wedding perfect. She even joined the superhero theme and created an image of me carrying Hannah through the sky. It sits on our windowsill now. A beautiful reminder.

[Image 2. A personalised wedding artwork combining a superhero theme with a romantic occasion. The groom is illustrated as Superman carrying the bride through the sky, surrounded by pink hearts. The image celebrates Martyn and Hannah’s wedding day with playful, affectionate symbolism and bright colours.]

She fought for me too. Being an alcoholic meant I couldn’t take communion. She petitioned our priest every year. He always refused. She kept going. When the new priest said yes the joy on her face said everything. Years of battle won. All for me.

She backed my theology studies, our social media work, and my ordination process. She wasn’t my mentor. She was my cheerleader. She was everyone’s cheerleader.

I keep thinking about the way she held us through every season. She planned to retire. Then Simon arrived. He abandoned us. She didn’t. She sought her PTO (permission to officiate) and carried on. She held our church together when it could have fallen apart. She didn’t fix things. She didn’t need to. She simply stood with us. She stood when my marriage broke, when my mum died, when dad died, when the boys struggled, when I struggled, and when the church struggled. She always stood with you. That was her ministry. Quiet presence. Steady love. Faith lived in the small things that shaped a life.

She saw me. She accepted my disability without hesitation. She understood that things needed to change. She listened. She let those changes ripple out until inclusion became our culture. Not because I made waves, but because she allowed them to spread. She wanted to learn and understand what to avoid. Even last week she was writing in our WhatsApp chat about the dangers of hands‑on healing. Inclusion wasn’t a stance. It was her. She built a space that welcomed us all.

Our church is her legacy. The people there worshipping every week. The way we welcome, hold each other, show up, and love unconditionally. The way we make space for noise, grief, joy, and difference. She taught us that. We are her work. We are her ministry carried forward.

She never preached the loudest sermons. She lived them in the way she welcomed people, protected the vulnerable, fought for the overlooked, and carried the weight of others without ever making it about herself. Her faith was not a performance. It was a life poured out quietly, faithfully, and without hesitation.

We are heartbroken. We are all changed because of who she was. She built a church, home, and a family. She built us. Our prayers and thoughts are with her family now. She was one incredible woman.

Parenting James: Learning Again, Living With Trauma, and What the Diagnosis Really Means

2026-05-18T01:30:00.000+01:00

James has been with his new tutor for three weeks. We didn’t know how it would go. He spent the weekend before the first session begging me to cancel it. His anxiety was through the roof. He didn’t want to go back to anything that looked or sounded like school.

We didn’t cancel. We adjusted. We started at 10am instead of 9.30am so he had space to breathe. That shift made the difference. He met G. They talked. They found a rhythm and lesson interests. She explained that learning didn’t have to be at a table, actively involving worksheets, or be the rigid routine that broke him. They could go out, explore, and learn in the world. Whatever sparked his interest. Lessons, resources, and routines all built around him.

It was the first time in a long time that an educational adult spoke to him like a person rather than a problem. The mutual respect he longed for was happening. James, like he did all those years ago, is back being home educated and happy again.

The council has funded fifteen hours a week. Monday to Wednesday. 10am until 2:30pm. It’s a flexible type of home schooling that mixes elements of unschooling that home educators know well. It’s the opposite of the traumatising environment that pushed him into EBSA.

He studies English and Maths, but has also chosen Business Studies and RE. He’s showing me his work. He’s proud of it, engaged, and curious.

That’s the hopeful part.

The harder part sits underneath it.

James is still traumatised. He says he’s fine, dealing with it, and that he’s not in a bad space. He also says he doesn’t know what to do with the feelings that sit in his chest. He pushes them down. He carries them quietly. He’s nearly fifteen and carrying more than most adults.

He carries the trauma from his first secondary school. The physical beatings for dressing differently. The emotional trauma of being bullied, dismissed, and let down by the system. The feeling that as parents we failed him. He carries the trauma from this last school, where punishment was prioritised over needs and accountability, and was pushed to the point of breaking. He carries the trauma from his mum’s home which led to him moving in with us. He carries fear around my health, the years of change and deterioration, his own acceptance, and the way strangers stare at me, make jokes, and the wider, world‑embedded ableism. All alongside the worry that I’m getting worse.

He isn’t fine. He’s coping. There’s a difference.

The ASD diagnosis came through last month with ADHD in December. It didn’t surprise us, him, or anyone who has spent time with him. It explained everything we had been raising for years. It explained the sensory overload, the shutdowns, the panic, and the “behaviour” that was never behaviour.

This is the part that’s hard to write about without slipping into anger. We raised unmet SEN again and again. We explained what we were seeing and what he needed. We explained that his distress wasn’t a choice, EBSA was a response to trauma, not a compliance refusal, and that the strategies being removed were the strategies keeping him afloat. The system, policies, structure, staff expectations, and dismissal against standardised responses hit him hard. They could never meet him individually.

We weren’t believed.

The school framed it as behaviour, attitude, a child who didn’t want to try, a parent who was difficult, and as misunderstandings and “not best practice.” They dismissed the complaint, the evidence, and the impact.

Now we have the diagnosis. The language. The clarity. The proof that everything we said was accurate. The consequences of those misinterpretations haven’t gone away. James is still living with them. He’s still anxious, rebuilding trust, and trying to work out how to move forward.

Section 19 tutoring is helping him learn again.

For those who don’t know, Section 19 is the legal duty that kicks in when a child can’t attend school because of illness, disability, or emotional need. It’s the moment schools say “we can’t meet this child’s needs,” and parents say “we won’t accept that, so provide something suitable.” The council then must provide education that matches the child’s age, ability, and SEN. It’s the safety net that steps in when school has broken down. For many families it becomes the bridge between trauma and recovery, especially for children with EBSA who need time, trust, and the right support before they can learn again.

Section 19 isn’t healing the trauma, resolving the past, providing accountability, or giving him closure. It’s a lifeline, not a solution.

Healing is slow, messy, and not linear. It’s a fifteen‑year‑old boy sitting at the table saying he’s fine while his anxiety calms. It’s a tutor who understands EBSA and takes things at his pace. It’s a parent trying to give space without stepping back too far. It’s a parent who is grateful for the communication he has but worries about what is not said. It’s a diagnosis that explains the journey but doesn’t erase it.

James is learning again.

James is still hurting.

Both things are true.

So, where next? I responded to the Trust representative this morning. James still desperately needs some accountability. I believe it will help him. We’re not letting anyone dismiss the truth, even if he’s in a good schooling situation now.

A Pentecost Study: Together

2026-05-15T01:30:00.000+01:00

A Pentecost Study: Part 1 - Together

“When the day of Pentecost came, they were all together in one place.” (Acts 2:1)

The Bible never imagines faith as a solitary project. From the first pages of Scripture, togetherness is woven into the fabric of God’s design. The Old Testament word most closely tied to this is ’echad—often translated “one,” but meaning a unity made of many parts. Israel was not a collection of individuals but a people bound together by covenant, memory, worship, and responsibility. Their life with God was always communal: festivals shared, prayers spoken together, burdens carried collectively, justice upheld by the whole community (Deut. 16:20; Lev. 19:18).

Togetherness in the Old Testament is not sentimental. It is costly. When one person sinned, the whole community felt the fracture. When one suffered, the whole camp stopped. When one rejoiced, the whole nation sang. Israel’s identity was not “me and God” but “us and God.” Even God’s presence dwelt in the midst of the people, not at the edge. To be God’s people was to belong to one another.

We see this in Esther’s day, when the whole Jewish community put on sackcloth and ashes, fasting and crying out to God as one people in the face of persecution (Esther 4:3). Their shared lament becomes a powerful picture of togetherness — a community holding fear, hope, and faith collectively rather than alone.

The New Testament deepens this vision. The Greek word koinonia describes a shared life—participation, fellowship, communion. It is not coffee‑after‑church friendliness but a radical joining of lives shaped by Christ. The early church devoted themselves to this (Acts 2:42). They shared possessions, meals, prayers, and stories. They wept together, rejoiced together, discerned together, and suffered together. Paul describes the church as a body—many members, one life (1 Cor. 12). No part can say to another, “I don’t need you.”

Jesus Himself forms community wherever He goes. He gathers disciples, sends them out in pairs, eats with strangers, restores the isolated, and breaks bread with the overlooked. Even in Gethsemane, He asks His friends to stay awake with Him. On the cross, He forms a new family—“Behold your mother… behold your son” (John 19:26–27). Resurrection does not scatter the disciples; it gathers them in locked rooms, on roads, and around tables.

This thread of togetherness becomes the doorway into Pentecost. Before the Spirit comes, the disciples are not scattered or hiding in isolation. They are gathered, waiting, praying, holding one another in uncertainty and hope. Acts begins not with power but with presence—they were all together in one place. Pentecost does not happen to individuals; it happens to a community.

Pentecost becomes the moment this gathered community is filled, empowered, and sent. The Spirit does not create togetherness; the Spirit fills the togetherness already present. The fire rests on each person, but the sound fills the whole house. The languages are many, but the message is one. The Spirit honours difference without dissolving unity. Pentecost is the birth of a people who belong to God and to one another.

So what does that mean for us today?

We live in a culture that prizes independence, privacy, and self‑sufficiency. We curate our lives, protect our space, and often carry our struggles alone. We can be surrounded by people yet feel deeply isolated. Technology connects us but does not always join us. Community becomes something we attend rather than something we are.

Biblical togetherness is different. It is not about constant closeness or forced intimacy. It is about choosing to belong, to show up, to carry and be carried. It is the courage to let others see our wounds and the humility to hold theirs. It is the slow, patient work of building trust, forgiving often, and refusing to walk away when things become difficult. It is the shared life that reveals Christ.

Pentecost reminds us that the Spirit meets us not only as individuals but as a gathered people. Sometimes togetherness looks like prayer whispered in weakness. Sometimes it looks like meals cooked, lifts given, tears shared, or silence held. Sometimes it is simply this: “You do not walk alone.” The Spirit who came upon the disciples together still forms us into one body today. Together is not a feeling. It is a practice. It is the way the Spirit forms us into one body.

A reflection

Togetherness is not about being the same but about being joined by grace. It is the quiet miracle of God weaving many lives into one story, where burdens are shared, wounds are tended, and hope is held between us. It is the place where Christ becomes visible in the love we offer and receive, and the place where the Spirit still descends upon a people gathered in expectation.

Questions

1. Where have you experienced true togetherness—moments where someone carried you, stood with you, or helped you see Christ more clearly? What made that moment possible?

2. What does it look like for you to practise togetherness in your daily life—at home, in church, in friendships, or in places where community feels fragile or strained?

3. As Pentecost approaches, what might it mean for you to wait, pray, or hope together with others—trusting that the Spirit still fills communities who gather in expectation?

A prayer

God who gathers, You call us into a shared life shaped by Your love. Teach us to walk together, to carry one another, to forgive freely, and to hold hope for those who cannot hold it for themselves. As Pentecost draws near, prepare our hearts to receive Your Spirit again—not alone, but as one people. Knit us into one body by Your Spirit, and make our life together a witness to Your grace.

Amen.

If you want to read Part 2 and Part 3, please click on the links.

When Survival Isn’t Abstract

2026-05-14T01:30:00.000+01:00

Tuesday morning I published a post about the difference between being a victim and being a survivor. I wrote about naming harm, refusing minimisation, and understanding the patterns that shape how disabled people are treated.

A few hours later, life handed me another real time example.

Arty, while at school, used his early exit pass to leave class. This is a reasonable adjustment that helps him move between lessons without being overwhelmed by crowded corridors and prevent dysregulation. This has been incredibly helpful. Arty often had issues either from his last lesson, during transition, and social breaks, which resulted in either hyperactive or negative behaviour responses within the next lesson. For a child potentially with ASD, on top of Sensory Processing Disorder, dysregulation is normal.

He was approached by a pastoral staff member who challenged for “loitering.” She didn’t check his emotional state or consider that the pass itself is a sign that he needs to regulate between lessons.

She then told him she would speak to the SENCO about using the pass “properly” and whether it should continue. For a child like Arty, this is a threat. Consequently, his flight or fight kicked in and he breached appropriate behavioural expectations. This was expected. He’s dysregulated. The time between transition is reducing. Its being wasted on behavioural challenges rather than pastoral care by a staff member he’s had issues with before. At his age, I would have done the same. I was often in trouble for opening my mouth against staff.

His response was treated as defiance rather than communication. SEN parents know that's not the case.

[Image 2. A clean, accessible quote graphic about understanding behaviour as communication. It highlights how focusing on how a child communicates rather than why they communicate can lead to misunderstanding or silence.]

The law is clear. Schools must use their best endeavours to meet individual needs. That cannot happen through generic behavioural responses and expectations.

I had no idea about this incident until said staff member called round 10am.

I listened fully. I spoke respectfully, calling her "Miss," as I always do. However, when I tried to clarify two points, I was repeatedly spoken over. She became argumentative. Almost as if she expected me to squawk in shock and surprise at what she was presenting. When I didn't, she had to argue with me. I asked politely to finish my sentences. I wanted to shine a light on something she missed. I didn't want an argument. I was ignored. I tried again. The interruptions continued. To be honest, they never stopped. I had to listen, agree, or just be silent. This was not a conversation.

The patronisation then began. I was told that I didn't understand how exit passes work, more than once, and that I didn’t understand. If you're not going to listen, mutually respond respectfully, and consider what's being said, then the problem isn't my understanding or communication, its your unwillingness to hear it. One-sided respect is not acceptable.

I could have explained my teaching background, knowledge of SEN law, and how all of this applies to Arty, who, as my son, I know well.

I was not given the space to think, let alone speak. It became too much. I had to stop it. The conversation was triggering because it mirrored a lifetime of being spoken over, dismissed, ignored, made into jokes, or patronised as a disabled person. The extent of actions I have survived and many disabled people have to endure.

I was told I was wrong.

About what? My disability? My lived experience? The impact of her behaviour? Or, was she still challenging, wanting to continue the argument regarding exit passes?

The hardest part was not the disagreement, misunderstanding, or dismissal of something that sits at the core of my daily life. It was the lack of reflection and apology once I explained it was triggering.

The Equality Act protects disabled people from unfavourable treatment. Communication is part of that. Interrupting, dismissing, and assuming incompetence are not neutral behaviours. They land differently when you have lived your whole life being treated that way. Ableism sits in the background of all of this. Structural, interpersonal, complicit, and implicit ableism exists. It shapes the society around us like an invisible presence, and unless you recognise it, you never see the impact.

Survivor language matters. While I try to shine a light, sometimes things need to be challenged. Ableism is everywhere. The fight between equality and equity still continues. Naming harm matters. Disabled people often feel unheard in systems that claim to support them. Yet, I still expect for these things not to happen. It was not ok.

I did not break, shrink, and internalise it. I named it. I have since raised a formal complaint.

Survival isn't always a big experience. It can become a daily posture. The decision to speak when silence would be easier. It refuses to accept minimisation as normal. It is the choice to hold your ground even when someone pushes against you.

I will always work cooperatively with schools. I will always support staff, model respect, and name harm when it happens. That is not conflict. That is safeguarding. The SEND Code of Practice states that schools should work in partnership with parents to develop a clear understanding of the child's needs. Communication should be collaborative, respectful, and centred on the child's best interests. This is not dismissing, interruptions, making assumptions, or patronisation. I will have to wait and see if they acknowledged this complaint and want to continue to work collaboratively.

Survivor, Not Victim

2026-05-12T09:09:55.478+01:00

Being a victim and being a survivor sound similar, yet the difference determines how people treat you, hear you, and decide whether your story is valid. This difference has come up in several conversations recently, from ordination discussions, the current CoE safeguarding audit, and general chats. This has caused me to reflect on what I name, why I name it, and how I understand the harm I have survived.

We should distinguish the difference. So, what is the difference between a victim and a survivor? A victim is someone harmed by something they did not choose. A survivor is someone who has lived through it, healed from it, and refuses to let it define or silence them. Both matter, but the difference changes everything.

I am a survivor of childhood abuse that led to my adoption, my alcoholism, decades of spiritual abuse, and some I don't name. I have now healed. They are part of my story, but not the whole of it.

A friend, a priest, and my ADDO have all recently discussed reconciliation, moving forward, what do I do with the things I have named, what counts as spiritual abuse or institutional harm, and what is best left in the past. It's simple. Harm is harm. Abuse is abuse. Whether it makes headlines or not.

Reflection, prayer, guidance, and writing about fifteen years of institutional harm, thirty years of balancing my health, February's unsafe meeting, the bishop, not wanting to be alone with her again, and naming abusive priests has given me clarity. A few months back, I didn’t know what to do. I do now.

I am healed from past actions and have moved on. I'm not in danger. Two people I named were in my life fifteen years ago. Both are now far away. I am now different. I have grown as a Christian, matured in age, mind, and body, and would never allow those things to happen again. Years of being dismissed, abused, or diminished taught me to recognise red flags and to speak up. Those years reshaped my understanding of power, responsibility, and harm.

Then came the more recent harm. A priest, “Simon,” arrived in 2021 and was licensed in 2022. I protected his name on this blog. I am not sure I should have. He's back working in church leadership despite his harm. I don't know if the Church knows. He mocked disabled people. A woman’s limp became a joke. As if we don't suffer from being jokes already. He described disabled people as spiritually lesser and how we're possessed with demons and bad spirits. He pushed healing and exorcism without training and openly scoffed about not being authorised by the church. He blamed our “little faith” when miracles didn’t happen. His behaviour towards LGBTQ people is documented on Wikipedia. He also bullied women. Families left. The relationship with our sister church fractured. The damage was real. We’re now dividing our parish to be two independent churches.

Yet I don’t regret it. I complained, recognised his actions, and refused to minimise it. That came from surviving earlier harm, learning patterns, studying disability theology at college, listening to others, understanding structural, spiritual, interpersonal, accessible, and complict ableism, and the difference between equality and equity. It came from knowing when to fight, when to shine a light, and when silence protects the wrong people.

Healing narratives are complicated. Physical and spiritual healing, like Simon promoted, is a pandemic sweeping through congregations. Maybe it always has been. Maybe I just see it more clearly now. Either way, it harms people. Despite my issues with the Bishop, she commented on this. She knows its spiritual abuse. Healing should be the slow, steady work of naming truth, rebuilding trust, and learning to face the world again. Survivors understand that.

A friend told me recently that she used to minimise and excuse harm, saying things like “maybe it wasn’t that bad”. She did that until people did it with her struggles with Simon. She hated it. I understood that. I’ve lived it. Victims get blamed, questioned, and misunderstood. Survivors name it and refuse to shrink it. She helps others now.

Small things still continue. My ramp blocked the communion table and the route taken last Sunday. The warden initially didn’t place it out. He thought I could lead on the lower level. He couldn’t see the problem. Later, during communion, he didn’t fold it up for safe passage. He wasn't malicious. He simply didn't understand the barriers either I or others faced. The difference between equality and equity. People do not see what does not affect them. Ignorance is bliss.

Our parish has lived through that. Lies spread. Narratives formed. Our sister church believed them. The diocese and even fellow college students heard them. We became the church that “dismissed a priest”. We became the problem. The truth was lost in the noise. Survivors often are. It’s easier to absorb a rumour than confront uncomfortable truths.

The Church of England is trying to address this. After Archbishop Justin Welby stepped down due to his impact towards abuse, harm has become too loud to ignore. I believe Archbishop Sarah Mullally will make a big difference.

I want to help. I'm a survivor. I advocate, support, write, fight, shine a light, guide disability understanding, not only in church but wherever it's needed. I will not back down from naming abuse and harm.

Survivors do not stay silent. Survivors rebuild, help others, and choose truth over comfort. I am one. Strength that brought me here will continue.

When Your Past Leaves No Trace

2026-05-05T01:30:00.000+01:00

Childhood memories feel like blurry moments once lived. Photos, certificates, medals, and school reports usually prove those moments existed. I do not have that. My past has been erased. Adoption took the first part. Life took the second.

My life before ten months old was written by strangers in a file. No photos, no keepsakes, no stories. No one who remembered me. I grew up knowing I was chosen, although I also knew I had no beginning. My mum and dad became my start. Mum was the anchor. Dad was the contradiction. They gave me a childhood that felt full, although so much of it is now missing.

I have told my wife and children stories about my childhood and teens. I talk about ice skating competitions, karate gradings, Scout camps, Duke of Edinburgh awards, hang gliding, swimming badges, childhood adventures, cycling around Medway, learning instruments, art competitions, the day my artwork ended up in a Japanese museum, and my school and university experiences. I can describe every detail, picturing trophies, uniforms, certificates, and photos. None of it exists now. Not a single piece.

When we cleared Dad’s house after he died, we found a video from my fourth birthday and photos from before my teens. Everything after that was gone. Eleven to twenty one. A decade of life, achievements, and proof. Nothing survived. It felt strange at the time, although grief distracts you. You focus on the loss, not the moments buried in boxes that no longer exist. You simply work through the grieving process.

I have tried to make sense of it. Mum was the fighter. She pushed me to live a full life and refused to let disability define me. She made sure I kept going even when doctors said I would not. She was the one who pushed me to do everything. She was also practical, privately emotional, and protective. She may have removed the reminders of what I used to be able to do, not wanting to hurt me when I looked back. Maybe she could not face the contrast of what I was going through physically. She hated how skinny, skeletal, and ill I looked during my teens. Maybe she wanted to remove that version of me. This wouldn't have been a surprise. She's done it before. I had begged for a mountain bike for so long. I received it on my thirteenth birthday. Then my health kicked in. It stayed in the loft for a few months. Then vanished. Never seen again. Remove it, don't discuss it. Pretend it never happened. That was the way mum worked. However, I will never know why I have nothing now. She died fourteen years ago. The answers died with her.

Dad could not help. Dementia and Alzheimer’s took his memories long before he died. Life became harder when he was diagnosed with cancer and then the stroke. He couldn't recall anything. He was never the historian. Mum remembered the dates, events, and details. She held the timeline and the archive. In some cruel twist of fate, when she died, the archive died too.

This is why the missing decade hurts. It is not about trophies or certificates. It is about validation, knowing who you are, knowing your life happened the way you remember it. It is about having something to show your children. It is about having a past that exists outside your own head.

My health journey adds another layer. I lived through misdiagnosis, fear, and the expectation that I would not reach adulthood. I kept going. I lived a full life. I pushed through everything. I fought because Mum taught me to fight. My body, abilities, and identity changed. The physical reminders of who I was would have shown that journey, the contrast between then and now, and the life I lived before FSHD took over.

What I have instead are memories, stories, and moments that shaped me. I have the life I lived, even if I cannot hold it in my hands. I feel the same ache I felt as an adopted child, where the proof existed before someone chose you. That still stings.

I investigated my adoption. My birth dad was, and still is, a genuinely good and nice man. He’s someone the boys and I are glad to have in our lives. Nevertheless, life, forty‑three years on, has moved in its own direction. My birth mum was completely different. It didn’t matter how much I tried. She was complicated, immature, and at times openly unkind and nasty woman. There were lies, dismissal, ignorance, and petty, vindictive acts, all while hiding the truth and blaming everyone except herself. I never had a willing participant to answer those early years questions. She died in 2024. As with my adopted parents, the truth about me is lost, never to be found. There is no evidence my life happened the way I remember it.

I wish I could turn back time. Maybe I could have collected and saved everything I wanted. None of it felt relevant then. Like everyone else, I assumed my life was kept in tidy boxes in my parents’ loft, a hidden treasure to unearth later. I never expected to feel like my life had been erased.

My past leaves no trace. It leaves me as the one who has to write it down now.

Wrexham, Weddings, and a Family Weekend

2026-05-01T01:30:00.000+01:00

It’s a bank holiday weekend. May bank holidays usually have us taking part in the Sweeps Festival, but this one is different. The six of us are driving to Wrexham to celebrate Hannah’s brother getting married on Monday. The rest of her family arrive on Sunday. We wanted to stretch the weekend into something more than a timetable and a wedding, so we left today.

I have been looking forward to this trip since the moment Hannah told me about the wedding. I love Wrexham, the football club, and the story. I watched every season of the documentary. I have followed the rise from the National League to League Two, then to League One, then to the Championship. The history‑making back‑to‑back‑to‑back promotions. It’s soaked in history. Wrexham AFC is the third oldest professional club in the world, with their ground, STōK Cae Ras (STōK Racecourse), being the oldest international football stadium still in use. I have loved it so much that I even bought the season pass so I could listen live to every match. I cheer, shout, despair, and celebrate. I am a football fan.

That sentence still surprises me.

I grew up in a house where sport was everything. My dad loved football. Every weekend the TV was locked to whatever match and game he wanted to watch. Often watching multiple. My brother loved it. I didn’t. I was the wrong son for that world. Football became a symbol of everything I wasn’t. It was loud, physical, aggressive, and competitive. It was everything my dad thought I should be. I wrote previously about the weight of being compared, the faces he wore, the man he became at the end, and a eulogy that held truth without rewriting anything. I accepted who he was, who I was, and that we would never have authentically met in the middle. We did manage to maintain a relationship after Mum died, enough to be by his side near the end. That meant a lot.

Maybe that is why this weekend feels layered. I am going to the town of the club I chose for myself. I am being the football fan my dad wanted me to be. I’m finally engaging in an area where we would have mutually met. Saturday is also a big day for Wrexham. The Championship is unpredictable. Results swing wildly. Tables shift in minutes. Wrexham are fighting for a play‑off place. Other teams are pushing against them. The day could be joy or heartbreak. I am trying to manage my expectations. At the start of the season I would have been happy ending mid-table. I didn't expect them to be here. I know how football works. I may have hated it growing up, but my dad at least made sure I understood it. Through him, I know that joy and disappointment is part of the experience. It is part of being a fan. I’m embracing it all.

We will arrive and settle into the hotel today. Tomorrow we will explore the town, walk past the stadium to feel the atmosphere, and I, with some of my gang, will visit the Turf and watch the match against Middlesbrough. I want to hear the noise, see the shirts, flags, players, and fans in the element I have watched from afar.

I have been thinking about my dad a lot while planning this weekend. I think about the things he loved, the things he missed since he passed away, the things we did when I was young, and the distance between us. I want my kids to remember trips like this as something warm, something they did with me, and remember that we built memories. Life isn’t easy. The kids carry their own baggage, just as I did with my dad. I don’t always get this parenting thing right. I hate that they have moments where things went wrong and I wasn’t the dad I should have been. I hope they can read this when they are older and appreciate a good and happy weekend away together.

It’s not all football and weddings. On Sunday we are going to Chester Zoo. It will be one of those days where we walk for hours, take photos, and enjoy the UK’s most popular conservation zoo that houses over 30,000 animals and more than 500 species. These are the family moments I miss from when the kids were little. Not the big events. The small ones. The zoo trips, visiting castles, and embracing culture. The feeling of being together without rushing. All before we head to the hotel where Hannah’s family are staying for Monday’s wedding.

This weekend is a wedding, a holiday, and a football match all rolled into one. It is a family of six in a car heading to Wales to build memories. It is a chance to rewrite my youth through my children now that I am the dad.

I am sure there will be plenty of photos that will lead me to write about this weekend and share it here. For now, I’m happy we're together and heading to Wrexham.

Looking Back at a Diagnosis That Never Fit

2026-04-30T01:30:00.000+01:00

I have been blogging consistently again since December. I have been trying to rebuild good blogging habits and have been working through old posts. As I said in my last post, I have noticed how much my writing has changed. I have gone right back to the start, revamping posts and reflecting on the person behind them.

I wrote about the early days of my mental health journey and rebuilding life around my two boys as a single dad. In many cases I have added forward links, especially to my 2015 Dependent Personality Disorder post. Reading it again felt like opening an old diary written by someone I barely recognise. The words are mine. The feelings were real. The interpretation was not. I can see that clearly now through my post on neurodivergent communication and the many aspects that led me to seek an ASD assessment. The distance between then and now shows it all.

I wrote that post three years after one of the most unstable periods of my life. My marriage ended. My mum died. My health collapsed and changed. I was drinking heavily. My routines disappeared. My support network thinned. My identity cracked. I was grieving and overwhelmed. Maintaining my mental health was difficult in a system that failed so many. I had not long completed psychotherapy. I was trying to parent, co-parent, and rebuild my life. I was also undiagnosed and unaware of how autistic burnout presents in adults. It is no surprise that a clinician saw dependency and emotional instability. It is also no surprise that I believed them.

I described myself as someone who could not make decisions, feared abandonment and clung to people. I said I couldn’t choose clothes, was passive, needy and dependent. I read those lines now and see a person explaining distress without the language to understand it. The problem was not my personality but the collapse of every routine and structure that kept me regulated.

I have always worn the same outfits. I rotate the same combinations. I choose clothes based on texture, comfort and predictability, especially as a disabled person. I struggled in 2015 because my usual clothes were not available. The day had already gone wrong. The routine may have shifted. It might have been a day when I would usually have the boys, but that week their mum swapped a day. I was not unable to choose. I was unable to cope with change. That is not dependency. That is autistic sameness and sensory regulation.

I wrote that I needed people to anchor me, even if it cost them. I can see now that I needed routine, clarity and predictable communication. Those things can be found in relationships, but not because I was dependent on the person. That never truly fitted. The difference is that I understand them. I am not dependent on people. I am dependent on structure. I always have been. The 2015 post reads like a list of autistic traits mislabelled as pathology. Routine disruption. Emotional flooding. Shutdowns. Executive dysfunction. Sensory overwhelm. Literal thinking. Difficulty with transitions. These are not symptoms of Dependent Personality Disorder. These are classic signs of autistic burnout.

I even contradicted myself. I said I was dominant in some areas. I said I was confident, set boundaries and was not attached in the ways the diagnosis suggested. I was describing a person who did not fit the label they had been given. I did not see it then. I see it now.

Hannah helped. She read so much about Dependent Personality Disorder and Emotionally Unstable Personality Disorder. It never fitted me. Autism did. For years she kept saying that she did not think I had DPD and that I needed to test for autism. It was only through helping Will and James get their diagnoses that I realised she was right.

The question people search for is simple. How do you know if you were misdiagnosed with a personality disorder. I searched it myself. The answer is in the pattern. Personality disorders do not disappear. They do not lift when life stabilises. They do not vanish for fourteen years. My life stabilised. My routines returned. I formed a stable and lasting relationship. My communication style, sensory needs, literal thinking and autistic traits remained the same. The dependency did not.

I look at the 2015 post and see a man rebuilding life, trying to make sense of himself. I look at my recent posts and see a man who finally understands the map. The communication differences I wrote about were present in 2015. The ASD sensory traits were present in 2015. The routines, overwhelm, shutdowns and emotional intensity were all there. They were just misinterpreted.

I am not replacing the old post because it was wrong or because I want to prove myself autistic. I am not trying to convince myself. I have had over a decade to reflect and know who I am. I am replacing it because I finally have the right language. I can see the difference between crisis behaviour and personality, dependency and dysregulation, and emotional instability and autistic burnout. I can see myself clearly.

Anyone who has followed my mental health posts will know that clarity has taken time. This is part of that journey. The 2015 post was a snapshot. This post is the reflection that makes sense of it.