They looked down.

The red rock beneath their feet, crumbling and dusty, ended abruptly at a sheer cliff edge. The silence of the air beyond breaking only for low cloud and the rumbling of a sallow and strychnine storm within. Beneath that lay the distant promise of verdant forest below. Above them the sky was clear and blue, the sun doing battle with the cold air of altitude. Their vantage was deceptively peaceful, beautiful. 

Violet felt the touch of a hand brush against her palm, searching absently for a gentle grasp. She responded in kind, fingers interlocking. Hesitation gave way to a comforting clutch, firm enough to feel like someone was holding on.

They were all holding on.

Violet permitted herself a glance to her side, to see the familiar warmth of Talia, her wild curls floating around her perpetually immune to all gravity, including that of their current situation. Talia’s smile only somewhat hid her trepidation.

‘We could just stay here…’ Talia almost whispered.

Violet grinned in response, a gentle chuckle released in a soft sigh. She shook her head.

‘I wish that we could’ Violet exhaled as she looked back out over the open air before them ‘...so much’

Talia responded with a little squeeze of her hand and Violet could feel the tremble beneath it.

Against the warning of her heart Violet stole a glance behind her. Red stood back, tall and dour, his arms folded. He still met Violet's gaze and his face cracked a solemn smile. Kai rested an arm on Red's trunk as he pulled off one boot, started to shake out a loose stone. Kai's blonde hair was as tousled, wild, and carefree as Kai himself.

And Misha, who saw Violet's expression and smiled reassuringly, her eyes creasing, before following her gaze back toward the encroaching darkness. A short distance off, the green lands broke into decay and desolation. The trees had withered and dessicated, the ground cracked, all life snuffed to silence. A dome of entropy within which even hope died.

And the dome was spreading.

Almost imperceptibly the lifeless boundary crept its way toward these five friends standing in their crude wing suits. The plan had come together perfectly. They would jump. They would fly. They would soar through the storm and hope against hope that their luck held out. 

They arrived supporting each other. Kai encouraged Misha when she tired, she found her resolve in his belief in her. Red caught Kai when he nearly fell into a ravine, and never let him forget it. And Talia. Talia laughed at Violet's jokes, freely giggling in a way she seemed to reserve only for her. Talia was wholly impressive, vastly overqualified, and somehow remained profoundly humble, almost annoyingly so. Violet had to stifle the urge to celebrate her too effusively, for fear she might actually upset her, a fate she thought quite possibly less emotionally survivable than the entropy they now had to flee. Not that accolades mattered now. The wall had seen to that. Now the moment was all they had. 

The moment before the fall.

Kai stumbled on one leg and giving a single rumbling chuckle Red held out an arm to steady him.

Misha stepped forward to look out over their destination, her face marred with concern. Violet reached out to her with a free hand, squeezed her shoulder. Misha rested a hand gently on hers. There were no words now. Violet searched for them anyway.

‘I…’ Violet hesitated. Misha looked at her and as Violet stumbled over consonants Misha hugged her, held her close. Violet felt Talia's body press against her from behind. Before she could say anything she heard ‘room for one more?!” as Kai bundled into the group. Red followed, his big arms encircling his friends. Kai made a noise like he was struggling to breathe and the tumble of arms and bodies jostled with laughter.

The laughter slowly subsided, but no one let go. They all knew what was coming. The dread of the storm. The roll of fate's dice. The silent chance they might not all make it. 

Violet wanted to say so much to these people. To tell them what they meant to her. To lay bare her heart. To reveal how frightened she was. To decry their fate. But all she could do was hold on. 

They were all holding on.

She couldn't bear to let go. The moment she let the world back in she knew it would consume her. This hug promised to defy gravity, for just a moment more, as though they might be able to just hold on forever.

But entropy approached and the cliff edge awaited. 

They stood together holding hands, staring out into the storm below. Red's face darkened, though Kai noticed and took the opportunity to question how someone so muscular wasn't about to drop like a stone out of the sky, and Red couldn't help but smile. And Misha took a deep breath, always mindful of the moment especially when the future was so uncertain for all of them.

And Talia. Violet felt Talia's hand squeeze hers and her tears were falling freely now.

‘I'm so happy we found each other’

And she spoke for all of them.

A moment passed. And they let go.

I’ve been watching Pluribus recently for the third time and while I freely admit that I totally have a screen crush on Rhea Seehorn, she’s outstanding in this show, it’s the story that keeps me refilling my popcorn. Avoiding spoilers, Carol Sturka was married, lived a privileged life, and was concerned with the little insecurities, exasperations, and mundanity that such a life afforded. Until one day she finds herself suddenly completely alone in the world. To begin with Carol adapts, but beneath the surface the foundations of her psychology are eroding. Carol experiences a sharp, desolate isolation that grows a deep and abiding need within her. That need is what the story is really about. It is unspoken, disguises itself as a kind of sadness, and is only revealed to Carol as she begins to find ways to meet it.

It is a need for someone else.

Carol has one being with whom she can have something of a relationship. They are morally questionable, responsible ultimately for the death of her wife. But they are the only company she has. Under the hood the show is about what you are willing to sacrifice to keep someone, anyone, in your life. It explores how love is a need so fundamental that in isolation you will find ways to meet it even in otherwise deeply unlikely places. 

Unlike Carol's, our world is replete with people. We are so populous that we have had to build walls to keep each other at sufficient distance. I live in this little rented flat with people within a few metres above me and to either side, with literal walls and floors between us keeping us apart. Beyond bricks and mortar we erect metaphysical walls of quiet, where we each keep our actions from unduly influencing the lives of the people around us. We are compelled to act in ways that minimise how much our lives brush uncomfortably against the people in our close proximity.

This is not how Humans are supposed to live. 

We are surrounded by people but we keep ourselves alone. The walls between us risk isolation. But in that isolation there is opportunity to find connection, even in the unlikely places. 

I went wheelchair racing on Saturday. I wanted to meet people, find friendship, and to work out my body in a way that means I can barely walk for days after. 

One of the two men running the event, whom we’ll call Logan, was deeply kind. I mean they were both incredible men, this isn't the good person Olympics, but Logan really stuck with me. I saw him helping people in and out of chairs, asking them before he placed hands to help them, considering their needs, responding to their requests. He was also funny and charming and, I'll be honest with you, I found myself flirting with him a little. 

Now I know what you’re going to say, dear reader, you’re going to remind me that I’m married. I’ll not say much about this here, but please know that I flirt with my partner's consent and she’ll be the first person I tell excitedly when I get home. I also know what you’ll say next, dear reader, you’ll say with some incredulity ‘aren’t you gay?!’.

Yes. I mean I think so.

For sure I’ve always been attracted to women. But there is something about Logan. He is kind, compassionate, willing to put his body under strain and, I suspect, no small amount of pain to help his disabled kin, myself included. Somehow I find that pretty attractive, I’m not going to lie. But this isn’t a sexual attraction. Well it’s not not a sexual attraction. But it’s also a source of a much more precious resource, desirable well beyond sexual fulfilment, that of affirmation.

As I enter a phase of my transition where my gender history slips further into the background of my life, I am starting to embody my whole self more comfortably. I think less about my transness, hardly feeling trans at all, and instead I just inhabit the world fully as myself. During wheelchair racing a woman I found abundantly hilarious was making me laugh and at one point she held out a hand toward me. I spotted the invitation for what it was, the opportunity to wiggle fingers at one another in a show of femme solidarity. I went one step further, reaching over to offer to hold her hand for a beat, and she reciprocated. The moment of intimacy we shared was lovely. I’m learning to just be who I am in the world. 

But this occurs in a country, in a world, where being trans is considered an enormous secret to keep. Being trans is seen as fundamentally invalidating, as though not telling people is a clandestine act. Being legibly you as evidence of a good disguise. That conception smothers our identities. In this world affirmation is precious because it reminds us we’re real. It is water to our withering self-concept, nurturing it back into being. In this world affirmation is like oxygen to a dying flame.  

Enter sexuality. 

When it comes to affirmation there is one form that is more powerful than any other, that of romantic intwinement. When someone likes you, they like you, the version of you they see before them. It is very difficult to discount the affirmation garnered by attraction.

Logan found me attractive, or at least I think he did, and his flirtation was its own invitation, one I am again just learning to identify and accept. And for those moments where we were flirting, he made me feel like myself. He saw me. When he helped me up. When he was worried about the weakness of my wobbly legs, holding me gently to steady me. When we shared a little joke. I started to breathe as if for the first time in a long time.

Now I know that if I were to take our little flirtation further, I’d have to tell Logan about my gender history. I’d have to come out to him. There’s no other option in this country unless you want to get arrested. And that would suddenly make my transness immediate and apparent even if it didn’t change how he saw me. Though I’m sure he’d search my features for signs, question whether I was indeed femme enough to maintain his sense of his own sexuality, consider whether I was passable enough to satisfy his friends and family in their perceptions of his sexuality. And there’s always the possibility that this knowledge would more immediately threaten his sexuality, and the risk that he’d be angry.

Being a girl is exhausting. Being a trans girl is outright knackering.

But this interaction teaches me something about affirmation. These moments with Logan are special for what they are, evidence of a little attraction between us, and full of the affirmation that brings. Playing with this attraction is risky I know. And I still don’t generally feel attracted to guys. But like love, in a world devoid of validation, in the context of a sharp, desolate denial of your being, you will search for and find affirmation even in the unlikeliest of places. 

And so I go on. In search of that spark that gives life to the parts of me exiled by an invalidating society. I find that fire wherever I can. 

And hope that my life can stand the heat.

I’m out in my wheelchair, the Rocinante, on my usual 5k route. This route pushes me past a river on which folks frequently feed the ducks and geese that periodically swim by. I push my way past this river, graced with dappled sunshine searching through the leaves above, and up to a bridge that spans it. It is here that I find a pleasant gentleman.

A man is crossing the bridge as I approach. He sees me, smiles, and gestures to me vaguely invitingly.

I slow down and take off my headphones. He’s wearing a herringbone cap and waistcoat that give him the aesthetic of an Edwardian gentleman. He is almost apologetic as he starts speaking. He tells me with some assertion that I am beautiful. I hesitate to agree, unsure of how to respond really. Mercifully he continues on, filling the awkward silence. 

‘It’s just that, it’s not easy…’ He gestures widely toward the wheelchair.

I nod sombrely, not wanting to dispel his deferential illusion. I realise now that the compliment might be a reflection of his pity, but it’s a long workout, my hair has burst into long winding trails like a premature firework, and I’m effusing an aroma that I’m pretty sure killed two bluetits and a curious squirrel on the last bend. So I can use the pick me up. 

I tap the wheelchair softly, with gentle lamentation. Of course in reality I move the Rocinante with all the concentration it takes to break wind, with similar habituation, familiarity, and satisfaction. And I anthropomorphise her enough that I’ll take time to apologise to her later for this offence, tell her I’m proud of her.

He continues…

‘You’re just very beautiful’

It becomes clear to me that this gentleman is slightly the worse for drink, not least because I’m not absolutely certain he is fully able to focus on the subject of his adoration. His eyes periodically meet mine before wandering off, making me want to lean to remain in view, though I’d need to choose which one to follow, they left cooperation behind a few pints ago. He’s so deep in his cups that he looks close to unlocking the secrets of the universe. Or of making significant mistakes, among which this may very well be.

‘You’re just, so brave’

I reply: ‘Well… I’m no Disney princess!’

It is at this moment that a group of pigeons sees us in their favourite feeding spot and flock in a circle around us. Music starts playing in my mind as this spiral of wings and feathers slowly comes to rest at our feet. One of these pigeons swoops up toward me and lands squarely on my knee. 

I and my admirer both look at the pigeon and at one another. The pigeon blankly returns our stares. I quietly proclaim ‘maybe I am a Disney princess…!’

This, of course, prompts my admirer to begin to move in circles in what can only broadly be described as a dance. He twirls in a rather loose pirouette and finishes with a flourishing bow in my direction. I look at the pigeon, who looks at me in return, understanding passing between us that this rather generously imbibed gentleman likely has no bread and thus offers few prospects for either of us.

I bid him farewell as he doffs his cap, and push over the bridge on my way, barely resisting the temptation to softly sing to summon my flock to my side. 

I could, though.

I am a Disney princess.   

I have very nearly reached my goal of 100k in May, raising £250 for the MS Society. Today I pushed 5k in the Rocinante, my trusty manual wheelchair, and tomorrow I push my final 5k to reach 100k, on the very last day of May.

I was a little behind my plan owing to climate change and the record breaking May heatwave the UK has endured in the past week. Last weekend I was at a wedding and I could barely walk with the temperatures so high, and pushing the Roci in the heat is a considerable challenge. So I decided to take a few days off and then push 10k yesterday to catch up.

Right at the end of my 10k adventure, a couple of friends were waiting for me at the local pub, which helpfully features right on the last hill I climb home. I pushed myself up the little hill the last few hundred metres and finally reached my destination, a well-deserved pint waiting for me at the table. My friends spotted me from inside and started waving to get my attention.

And watched as a man we didn’t know, smiling, kidnapped me. 

Sitting in the chair, having just arrived, I am looking for my friends when I suddenly feel hands on the chair and the unmistakable force of acceleration as the chair flies uphill. I know this feeling instantly for what it is. Some kind hero has taken it upon themselves to take control of the chair for me. The sheer speed is unusual, though, and I quickly realise this kind gentleman is sprinting us up the hill toward… well who knows where we’re going. I shout: ‘I’m actually heading to the pub!’ but he can’t hear me over the sounds of traffic and I assume his heroic blood pumping in his ears. 

We get a good 50 metres up the hill before he realises he has no idea where we’re going, and he slows a little to say ‘I realise I actually don’t know where you live!’

This is a fun interaction for me, because when he realises the series of bad assumptions he has made he’s going to feel pretty weird and I’ll get to enjoy his awkwardness. This kind guy has assumed I’m heading home, presumably from going to a local shop to buy disabled-people food, and he’s confident that helping me home can only help my day become a little easier. Of course I’m at kilometre 95 of a charity roll and also on my regular workout and I’m not sure I can count these 50 metres toward my goal or toward my workout. In fact it’s like him seeing someone riding a stationary bike in the gym, deciding that it looks difficult, and jumping on the seat with them to peddle for a bit. Thumbs up, my good man, no notes. 

This kindly stranger has also assumed that I’m going home, even though I have slowed to a stop at the door to a pub. There is no world where I might be going to see friends, or to get drunk, or to make bad decisions. You know, the kind of things that most people do at the pub.

This dude also assumed that he could put hands on the chair without my consent. This one is a bit trickier. The chair is an extension of my body, literally. The Rocinante is a part of me in a fundamental sense. When someone wants to put their bag on my chair when I’m not using it, I’m generally pretty affronted. For me, it’s like seeing someone seated and putting your bag on them because their lap doesn’t appear to be in use. Touching the chair is an act of intimacy. To this guy, the chair is like any other and taking hold of it is akin to moving furniture even if someone is sitting on it at the time, but to me it’s closer to grabbing hold of the wrist of a woman and running uphill with her. The experience really is that strange.

But it’s also so weirdly familiar. When the chair accelerates I instantly recognise someone I don’t know has grabbed me by the wrist and is taking me somewhere else. It happens all the time. 

As we fly uphill at full sprinting speed, this guy beaming the whole way, I take off my headphones and when he slows enough to ask where I’m going I say ‘actually I was heading to the pub’. He looks a little awkward and offers to push me back down the hill, to which I tell him that I can push myself, and he hesitantly asks how fast I can go. I leave him at the top as I fly at speed back down the hill it’ll take him a little while to descend, wheels are so much better than legs downhill. 

When I reach the pub there’s a step inside, so I get out of the chair to push it inside and his face reveals his final thwarted assumption. He did not expect that I could walk. In fact, I regularly walk the Roci up this hill because it is pretty steep and my shoulders appreciate the break. 

The final 5K tomorrow ends this mighty 100K challenge in May, just before I head to a retreat next weekend to make fellow MS friends. 

And for sure they’re going to laugh when I tell them this story. 

There is still time to donate to my 100K effort in May: https://www.themay50k.co.uk/fundraisers/corasargeant/the-may-50k

Last week the government laid out the EHRC statutory guidance to Parliament.

The guidance is a stark reflection of where the UK is at with regards to trans rights. I have been out for 15 years. 15 years ago I could not have imagined the place we have now reached. I am heartbroken.

The guidance states clearly that trans folk are to be excluded from gendered spaces almost entirely. Trans women are to be excluded from women's toilets, communities, sports, changing rooms, wards. The same for trans guys, who are to be excluded from men's spaces because they aren't considered men (ugh) and excluded from womens’ because - get this - they look like men.

I want to put this into perspective. A couple of weeks ago I went to a disabled adventure day and met some wonderful disabled women there who, like me, were using wheelchairs. A group of them were wheelchair rugby players and they were trying to encourage me into the sport, to join the team. Of course my gender history didn't come up in conversation. I'm pretty open professionally but I don't go around telling people I'm trans in my personal life, it just isn't usually all that relevant. I was hesitant in response to their invitation, and they knew it, but couldn't understand why. Did I just not like them that much? Maybe I just didn't like team sports? And I couldn't tell them that shortly it was going to be unlawful for me to join. 

I have been a girl in this world my whole life. I knew, growing up, I didn’t look like it. When I was in primary school I remember praying to some unnamed deity that I would wake up with a different body. And one day I did, it just took 20 years and the help of a specialist medical team. I have been visibly a woman for 15 years now. I’ve had estrogen flowing through my veins in place of testosterone that whole time. I’ve worked in schools as a psychologist, spoken at countless events including at Google’s HQ, I’ve published 20 scientific articles all as the fully realised Cora. Even my birth certificate says ‘female’, changed when the government admitted they got my original assignment wrong.

And yet I can't join the team.

And now I am to be excluded from all of these spaces. If I get sick I'll be placed on a men's ward or segregated to a room alone. If I shower at the gym or the pool I'll have to shower in the men's, even the accessible showers at my gym are inside the gendered showers. Every time I go anywhere and ask where the toilet is and someone points me toward the ladies’, do I now need to ask if they have a gender neutral option, instantly outing me to all in earshot? What if I'm in a dangerous place, where remaining secret is how I stay safe, do I head to the accessible toilet hoping that no one watching is too curious?

I use the accessible toilet a fair amount generally, I periodically use a wheelchair, but with gender diverse folks all now forced to use the one accessible cubicle available, I’ll need to queue more often. The last time I got caught in an accessible toilet queue it was during the intermission of a play, and I could either sit in the queue and miss the start of the second half or stumble into the ladies loo. Now, my neurogenic bladder isn't known for its patience. So when things are urgent and the one accessible cubicle is in use or out of order I will have to break the rules to use the women's, risking challenge, or use the men's, risking harassment.

And I have to now make the impossible choice if a service provider, a hospital, or even my employer, ask me to stay out of the toilets, groups, and spaces I have been using without issue for well over a decade. Do I conform and betray myself? Or do I thwart the rules and risk persecution?

I guess we're about to find out.

I went swimming for the first time in a long time today. I haven’t been swimming since my diagnosis with multiple sclerosis seven years ago, and I haven’t been to a public swimming pool in the UK since transitioning some fifteen years ago. There are certain places considered fairly high risk for a transgender woman to tread, and the showers at a UK public pool definitely feature in the upper echelons. I looked it up in the transgender handbook and the level of risk is slightly above ‘aaare you sure about this?!’ and narrowly below ‘maybe we get our affairs in order first’.

I drove to the pool and sat in my car outside. My heart was racing in my ears. Strange that if I was presenting to a few hundred people in there I’d feel totally comfortable, but using a public shower breaks me out in a cold sweat. In my car I practiced my voice with my voice analyst app. It resonated at a comfortably femme 200hz. I reminded myself to keep the resonance in my head rather than my chest, to ease into the start of harder vowels, to be softer, lighter. If you experience a guttural flinching at the notion of making my voice more stereotypically feminine, hastening to remind me that women sound different to one another and that my voice, my natural voice, shouldn’t impede my being in this world, know that you’re in good company. It sits weirdly with me, too. But if I didn’t do this, every time I opened my mouth someone in the vicinity would question my gender and in this place, in the showers in particular, someone ‘clocking’ me could quickly become unpleasant. When keeping hidden is how you stay safe you do what it takes to remain invisible, and stereotypicality is a hell of a cloak. 

I headed inside. 

I got changed in a cubicle, took a shower, and was shit scared the entire time. I don't even know what I was afraid of. I wasn't singing baritone. I wasn't even speaking. And all evidence points to people seeing me wholly as a girl like any other. And I know that there is no secret to discover, not really. When people think of me as a girl, I am in a truly fundamental sense exactly what they see. But somehow I still feel only ever a heartbeat out of place from discovery. That I used to be visibly a different gender is somehow still a really big deal, and someone working it out feels like a Benoit Blanc level of revelation, like they’re discovering you're the head of your own religion, or that you were once the Secretary General of Nato, or that you are really three attractive ferrets in a trenchcoat. 

I stayed quiet, slunk my disabled ass out of the showers and sunk myself into the slow lane of the pool. I pushed off. My arms now strong enough to power the water behind me in one long stride and I glided through the water like a nymph. 

And it was at this moment that I remembered that my legs don’t work. 

I can walk. My legs can keep me upright. But I’m a manual wheelchair user because they are weak and uncoordinated, and moving them is a little like trying to conduct an orchestra of toddlers. There is for sure movement, but it is only vaguely deliberate, and always on the edge of chaos. 

One of the fun features of spinal cord lesions is that they don’t quite know how to respond to physical sensation. The impulses travel up from the legs toward the brain like a courier taking a delivery to the President. It gets intercepted by the secret service somewhere on the front porch, the White House goes into lockdown, and despite her protests the President is pushed into a security bunker long before anyone realises she’d ordered Uber Eats and there’s now an innocuous burger and fries strewn about the manicured lawn. The impulse hits a lesion and the legs go into lockdown, cramping, flinching, spasming. They totally ignore my signals to relax, much less to do the walking thing, or indeed the swimming thing.

I found that the water essentially communicated a constant stream of sensory impulses that traveled up the legs that they couldn’t interpret. I realised, while gliding through the deep end, that I needed my legs’ cooperation to swim forwards, or to keep myself upright in the water. 

My arms are strong, and I used them to pull the water back in a form of breaststroke, doing my best to keep the legs outstretched behind me to offer at the very least aerodynamic support. It was hard to stay afloat with just the power of my arms but I managed it… barely… while inhaling a little water with my much needed air.

I coughed and spluttered as I caught my breath.

And amazingly I took the effort to ensure that I coughed and spluttered in the right vocal register. The thing that I thought immediately wasn’t that I needed to avoid dying here, but rather that if I did start to drown, I’d better make sure my last moments were femme enough. If I suddenly awoke from unconsciousness receiving mouth to mouth on the side of the pool, you can be damn sure my first gasps of breath would be recognisably girly inhales. 

This is intersectionality. 

That vigilant part of me drew her sword… donned her flippers? And we got to work, pushed the water aside and threw ourselves forward with force, hurtling us onward and surfacing with each stroke. I found my rhythm. I found my resolve. 

600 metres later I tried to get out of the pool and remembered that my legs get weaker with use, and though they had quickly become little more than glamorous floatation devices, they were still technically in use. I climbed out of the pool and my legs could barely keep me upright. No Rocinante poolside I shuffled my way to a nearby bench and sat my collapsing ass down to wait for the legs to recover well enough to be able to do the extraordinary work of… leaving.

Getting showered and dressed was nearly as much of a workout as the swim was, and took forever. My foot wholesale cramped while I was trying to put my sock on, and the soreness from the cramp caused it to cramp further as I spiralled toward the event horizon to a black pain hole doctors have warned me about. Trying to put socks on a cramping foot isn’t too tricky, it’s kind of the right shape, but trying to put a sock on while the other foot cramps requires Olympic levels of gymnastics. You play a game of footwear chicken, trying to get the sock past your heel before you tip over like a felled redwood, with a similar likelihood of being able to get back up. Slowly I got myself into clothes, got my detritus organised, and shambled my way back to my car.

In the car I put on my music and cheered my success. A thing that would have been easy to the point of being casual before, a task so simple you can get distracted while doing it, is suddenly one of the most difficult things I will do today. And we haven’t even talked about how I needed to refrain from drinking too much water beforehand to avoid needing urgent visits to the toilet, and how I hid a few catheters in my towel poolside in case I did. 

But today was a huge victory. Today I went swimming. And it’ll be hours before I can competently walk, and days before my leg soreness stops causing them to cramp and curl. But MS doesn’t take a difficult day off, and neither can I. 

This was also… a lot. There are many moments in my life now where I can almost forget that I’m disabled. I can go miles in the Rocinante, I can muster leg strength enough to manage nearly any incline, pushing the Roci ahead of me, and I can self-catheterise nearly without thinking. But there are still moments where I’m reminded just how disabled I really am. When I get a fever, when I’ve walked too far, and now when I’m swimming, my abilities become far more limited and I’m exposed to the full scale of the damage my brain and spinal cord have sustained. I was hoping to swim in the medium speed lanes, but just getting across the slow lane without drowning was more an ambition than a plan. And I am suddenly unrecognisable to myself.

But here I am, someone new. And maybe this new person doesn’t swim so well. But maybe the measure of this new girl isn’t in how easy she finds things, but in how she reacts.

So come and get me MS. Your girl is strong. And while she knows she will ultimately lose this fight, she’s going to make you earn every inch of progression you seek to take from her. Eventually, this will be my end…

…but I will make it such an end…

I was talking with a fellow MS-er today about the lifestyle changes we have had to make to manage the disease. We both feel an instinct to rebel against the rules imposed upon us by this disease, especially the strict specific diets that purport to help. I told her that our rebellion against MS is a good thing, that it's how we have survived. She challenged my use of the term. To her, MS is a part of her and fighting it is akin to fighting a part of herself. She told me she rebels with MS, rather than against it. I totally understand this perspective, and I respect it, but I also find it abrasive. 

MS is a part of me, literally. It is my own immune troops mistaking my nervous system infrastructure for enemy troop movement and opening fire. In that sense, my MS companion is right, fighting MS is really an example of fighting yourself. 

I’ve heard people say to me before that I should maybe ‘make friends’ with my immune system, or with MS itself. That all we need is some level of collegiality, an uneasy alliance, negotiations, tea and cake in nomansland. And to this I say, kindly, and with great understanding…

Bollocks. 

To me, MS is a monster. It prowls the edges of my defences, waiting for opportunity to strike. When it attacks, it takes whole chunks out of my nervous system, leaving me in pain, with limited vision, with spasms and numbness and spasticity and the total inability to control when and how much I pee. It makes swimming a battle with my own limbs as we fight between physical strength and absolutely drowning in defeat. 

I get strong not so that I can lift a heavier muffin to the lips of my enemy, but so I can withstand its strikes. I work out, I eat right, I drink enough cranberry juice and prune juice and eat fibre and apricots and blueberries so that when this monster comes for me my body is ready. When I stumble around the kitchen to cook a home meal it isn’t to invite my enemy to dinner, it is to be better fuelled for when it lunges at me across the table.

This foe will strike me again. There is no doubt of that. And we don’t break bread with an enemy we know will forsake any truce we draw up. We ready for the inevitable betrayal. 

The question for me isn’t about whether we fight, but how. 

I do ready my body for the physical conflict. When this monster strikes again, and strike again it for sure shall, I will have the strength, the agility, to give myself the best chance I can that I will get out of that encounter alive and in one piece. 

But I also fight on a totally different front. MS doesn’t just attack your nervous system. The constant threat, the loss, the symptoms themselves, the shrinking of your world, all represent an assault directly on your psychology. MS threatens your mental health at least as much as your physical health. 

But mental fortitude cannot be strengthened with a barbell. This is essentially the premise of an outstanding film Everything Everywhere All At Once. Our protagonist, Evelyn (played by the incomparable Michelle Yeoh), is used to fighting. Her whole life has been one long battle. But despite her best efforts she is losing her daughter, both her relationship with her, and perhaps much worse, she can see that her daughter, Joy (played by the incredible Stephanie Hsu) is losing hope. She uses every skill she has to save her, but this is not an enemy she can fight with her fists. Luckily she has Waymon (played by the legendary Ke Huy Quan), whom she has considered weak, something of a pushover, a hopeless optimist. The story is told through the multiverse, wild martial arts, and a bagel with literally everything on it, but beneath the hood the story is deeply Human. 

In the height of combat, Evelyn is ready to do ceaseless battle again with endless opponents to save her daughter. But knowing this enemy is not one that will fall to physical blows, Waymon reaches out to her. He says:

‘When I choose to see the good side of things, I'm not being naive. It is strategic and necessary. It's how I learned to survive through everything. I know you see yourself as a fighter. Well, I see myself as one too. This is how I fight.’

We need Evelyn’s strength. We cannot hope to defy such an imposing foe without the physical power we’ll need to stand against it, to literally push ourselves off the ground when we stumble, to rise up when we fall. But we also need Waymon’s optimism, his kindness. MS is going to take our heart as much as our skills. And fighting MS requires love as much as it does a sword. 

So while that vigilant part of myself will always draw her sword. And while when our freedom and life is on the line, fighting is all there is, fighting is who we become. Maybe our sword isn’t our only weapon, and maybe we must also fight by seeing the good side of things, by laughing, wielding kindness like a shield, and connection like a spear.

Maybe my friend has a point. Maybe I am Evelyn, trying to strike an opponent that will not fall to physical blows, and she is my Waymon, telling me that there is more than one way to fight. I'm not ready to lower my sword quite yet, but I can be kind, I can laugh.

And become a totally different kind of warrior.

Pilot Hill is the highest hill in Hampshire. My first attempt led to two falls, climbing the steepest incline I have ever attempted, getting rescued by carpenters, doing a wild wee, nearly passing out from dehydration, speedrunning new friendship, and the most refreshing drink at the pub imaginable. 

In our ‘rolling up that hill’ series, this was our first failure. But it was so much fun I'd happily fail it again.

I do my best to keep other people private on this blog, but I was joined by a new friend who saved me on this attempt. A lot. With water, kindness, companionship, unfailing enthusiasm. We did this thing together. Or rather we abjectly failed to do this thing together. And I am beyond grateful to have found such a friend and to have shared this experience with her. 

We began our adventure at a car park in Faccombe just outside a stunning pub in sunshine so strong it could melt concrete, so strong it could illuminate Saggitarius A, so strong that you could cook churros in the seat of my wheelchair. 

We looked at the map. The route to Pilot Hill didn’t look prohibitive. It was a few miles in a big circle through fields and alongside roads. The inclines were steady, steep at the start and manageable the rest of the way. We were confident. We set out. We immediately arrived at an unexpected crossroads. Left turned us up a road, right promised a footpath. The route planner seemed to suggest we head right. We double checked. We went right.

We should have turned left.

The right and deeply wrong footpath broke into fields and tractor paths not at all designed for a wheelchair. I stood and used the Roci as a walker as much as possible, sitting where I could and standing where I needed to. The first mile was challenging but manageable. The paths were difficult to navigate by chair but not impossible with my trusty MKII flywheel attached turning the Rocinante into a three-wheeled offroad machine. 

But even the Rocinante has her limits. 

I hit a large stone on the path with my central flywheel. The Roci bucked and turned suddenly into the grassy verge on the side of the path. The verge picked up my main right hand wheel. And it threw me off the left side of the chair. I hit the ground and rolled onto my back, the Rocinante tipping onto the dusty ground with all the pomp of a dry fart. I tested my movements. I had no major injuries with the exception of my pride, that for sure would take some time to heal in front of a new friend. With no injuries I pulled myself back into my chair. Not deterred, we continued on.

Without a toilet within range my bladder decided that now was the time to pee. Like a nuclear reactor in perpetual crisis, it indicated that it was probably about time to go with a sudden yet familiar meltdown alarm. There being no toilet on this route, I decided to try my hand at wild weeing. This was an adventure in itself. I have weak legs, which means that crouching is challenging. So I leant my back against a tree, bent my legs, and went to squat and squirt. But the heat meant that the messages couldn’t get to my bladder to open. Ironic, really, that I’m at risk of wetting myself while also being unable to pee. I can’t catheterise out here, I can’t sanitise my hands, so I attempt my best move ‘the jiggle’ to get my bladder to open. So there I am, trousers around my ankles, squatting against a tree, agitating my bladder with my hands to get it to open to squeeze out just enough liquid that I’m not at risk of wetting myself spontaneously en route.

It had become abundantly clear that we had taken the wrong route to the summit. The journey West was a fairly straightforward trip up to the hill, with the majority of it featuring smooth road. The Eastward route we had taken was a good couple of miles longer and across fields and paths, with steeper inclines and declines, and all challenging walking terrain that was basically impossible to wheel on. The forward progress we were making was slow and difficult, taking more energy, making us sweat in the heat, and pushing my legs more than anticipated. We decided to stop in the shade of some trees, work out our location, and decide where to go from here. We gave our animal companion water, rested, and took in the rather breathtaking sights. 

We worked out we were totally in the middle of nowhere. And we started to identify a problem. Our supplies were designed to last us the shorter route, not this longer and much slower trek. Our water was running low. My legs were in some trouble too, having used more of their limited energy resources than planned, which meant more rests to recover their strength, which used more supplies, which we didn’t have. 

It was at this point I realised that we were in some danger. 

I’d like to say that the vigilant part of myself drew her sword, but I couldn’t find her anywhere I looked. Instead I was met with a slowly rising panic that we might be in genuine trouble. The heat was too high, the distance too long since our initial wrong turn. Our water wouldn’t last. My legs wouldn’t last. We were in farmland and there was no one around. Whether we survived this adventure would depend entirely on our next moves.

But this was also the moment I craved. My life is always in danger and MS imposes a consistent threat that is usually abstract, the hypothetical danger of an imagined future that absolutely threatens your quality of life, but that isn’t physical enough, immediate enough, to fight here and now. If I relapse today my life as I know it could be over tomorrow, but what would take its place is entirely unknown.

Knowing that my legs failing means genuine risk, knowing that the lack of water and the need for more rest creates a perfect storm in which we might actually be unable to reach safety, is a very tangible kind of danger. And this kind of danger is one that I can fight. We were out in the wilderness with only our problem solving, only what we had with us, only the strength we could muster, only our laughter and companionship and the strength we could summon in one another, to survive. The risk brings my whole world into focus. I might die out here. But not if I can help it. And out here, I can help it.

Our wrong turn took us back upon ourselves accidentally, and we found an earlier part of the trail we recognised. So we decided to follow that trail back to the car. Miles further offroad. With a wheelchair. 

Somewhere around mile 2.5 I fell from the chair again.

Somewhere around mile 3 we ran out of water. 

Somewhere around mile 3.5 we found the steepest climb I have ever attempted.

At this point we should have failed. My legs should have been made of sponge and forcing the legs to climb that hill when they were overextended should have been an act of paradoxical futility, like trying to harden glaciers by leaving the freezer door open. But something happens in moments of genuine urgency. The adrenaline, the impending disaster, forces power through legs that would otherwise surely fail. And I found strength. I mustered all of it and forced the Rocinante uphill. My companion and I pushed each other onward, against all expectation, against near-inevitable failure, rolling these final dice against impossible odds. 

And somehow… we made it. 

We continued the incline toward the road. There was a pub up there, I remembered, and the car, and safety and water and success. 

We climbed the last of this hill. 

And there was no pub.

In fact, as we crested this hill we realised that we had no recollection of this little summit at all. We checked our maps, tried to get our bearings, and realised that somehow we had arrived at a totally different place on the route, somewhere on the path we should have taken by turning West at the start of the journey. 

We hurried to a group of carpenters nearby, they were working on a house, and we asked for directions. The pub wasn’t too far, but we had to travel down the road to get there. I asked for water. I knew I was badly dehydrated and with that climb, pushing 25kg of wheelchair uphill, I was overheating. Parts of me were worrying that we were at risk of heat exhaustion, heatstroke, or rhabdomyolysis (they catastrophise a little). These kind men found us a bottle of water and while my companion wasn’t dehydrated much at all, even though she had shared her water with me, quite possibly saving me, I drank hungrily. 

Quenched and with a downhill roll toward the pub, we arrived at our destination somewhat giddy, got ourselves drinks, and laughed loudly at how much fun we had nearly slipping into genuine crisis. There’s nothing like a shared endeavour to bring people together, and my friend and I are speedrunning friendship, she’s suddenly my ride or die… literally.

And we failed. We didn’t make it up pilot hill on this run. But we did learn some valuable lessons. First, I need to take more water, a lot more, to manage unexpected eventualities. I’m so grateful for my friend, for those craftsmen, and without them I might have genuinely not made it back. I enjoy being spontaneous, but I could plan a little better. OK I could plan a lot better. I also need to invest in a route map on my phone, Google maps just doesn’t cut it on these profoundly offroad endeavours. And I need to get stronger. My legs are clearly strengthening, and I’ve no idea how, but that gives me opportunity to become even stronger, to go further, to discover what I’m truly capable of.

For now we rest. We recover our strength. We let our wounds from the falls heal. We get stronger. We plan. 

And we try again. 

Before I began mounting the monster truck of transition and wheely-ing through the ring of fire of my life like it was Thunder Thursday, I listened to the podcast ‘Transponder’ with Mila and Jayna. These two hosts were funny and charming and eminently relatable, representing a step on the transition journey of which I was envious and to which I aspired. They were out, living as women in the world, with lives and careers, and the love of good friends, living fully and authentically. I had good friends. But my friendships formed a network built around a version of myself with cropped hair, a deep voice. A rumbling sadness covered by extroversion and humour. Existential dread disguised as trapped wind.

I frequently sat listening to Mila and Jayna on the edge of my bed with a face full of stubble dreaming of the day when I could be like them.

And now, somehow, I am. 

Mila and Jayna helped me to understand who I was, because I was like them. I had never met anyone like me before, spending much of my childhood believing I was the only one. My resonance with these women suddenly exposed my nature to me in a moment we in the community call ‘cracking your egg’. Now, years later, I am the person with a podcast talking about being trans with audiences, living as my authentic self. I’ve become Gwen Stacey, the friendly disabled girl bitten by a radioactive transgender spider. I've experienced radical physical changes, gained a whole new perspective on life, and if I'm stuck inside for too long I start climbing the walls. I’m swinging across UK conference stages, not the New York City skyline. I'm scaling hills instead of buildings. But I am that girl.

When Transponder came to an end, as podcasts do, Mila and Jayna reflected upon a phase of their lives with which I remain, to this day, unfamiliar. These women described how being trans had become so much a footnote in their lives, so distant a memory, that they no longer felt trans at all. They had become superheroes who no longer held a secret identity. 

They were just spider-women in the world. 

Last night I started watching the L-Word. And while this was not a show I’d have watched when it was released, not least because it would have shattered my egg like it was dropped from the international space station. I suddenly find myself really enjoying it. Now… it’s relatable to me.

I think this means I’m beginning to change how I see myself. Maybe I have found myself finally entering this elusive phase of my transition.

In a previous post I described how MS imposed itself at a time in my life when I was discovering who I was as a woman. I’d been learning about my interests, fears, aspirations, desires. Like carving a mandala out of painted sand. It was beautiful, incomplete, capricious. And MS is a hurricane.

Suddenly the pattern of my being I was learning changed, and would need to be learned anew. What you desire, aspire to, even what you fear when the world sees you as a man is not the same as what you fear when the world sees you as a woman. And this is not the same at all as what you fear when the world sees you as a woman in a wheelchair. MS makes changes to your life so frequently that you’re on a perpetual journey of self-discovery. Now that my MS has stabilised for the moment, I have enough room to begin to learn who I am now.

And that process might have taken an unexpected turn as the dramatic changes of transition slip further into the horizon. Masculinity, normalcy, becoming the memory of distant shores I once visited, long ago.

When I was up on Butser Hill with the lovely woman, Luna, who came to my aid with prayer and company on my climb, there was a strange moment. When Luna first approached me she was bubbly and curious, but when she approached me a second time she was cautious, described that she was out of her comfort zone here, and trepidatiously hesitated toward a question she clearly wanted to ask. In the recent past I’d have been concerned that I’d been ‘clocked’, that she’d realised I was trans and wanted to ask about it, at least to ask me to confirm her suspicion. But in this moment the possibility didn’t cross my mind. When she asked me whether she could pray for me, I didn’t feel relieved. I completely forgot, even, that I was trans at all.

Walking up the hill together Luna mentioned that it was nice to see another female face on the climb. And I didn’t feel particularly affirmed, even, it just felt… true.

And now here I am watching the L-Word. And I’m a little amazed. I don’t instinctively see myself as radically different to the women on screen. I don’t see myself as a trans woman watching a show about women. I am a woman watching a show about other women who, like me, are attracted to women. 

I’m heading to a hen weekend on Saturday, of a member of a family I have known and loved for well over a decade. We went to a wedding together in Goa, we’ve been to festivals singing and dancing into the night, and we went to a hen weekend together in Ibiza. When I went to that last hen do I felt like an outsider. Everyone was abundantly welcoming, it wasn’t because of anyone else’s actions, it was my own poison. But I felt like I didn’t belong, that my womanhood was almost a costume, a lie I desperately wanted to be convincing because it told a deeper truth of my identity.

Now, though, as I’m binging the L-Word and realising there’s a ‘Gen-Q’ spinoff I can’t wait to move on to, I realise that I am one of them. I’m on stages, on podcasts, making friends, finding connection, establishing myself wholly as the girl I am.

And with this change in how I see myself comes a change in the relationships I can build. Shon Faye describes the loves of her life as her friends. I recently spent an evening sat on a couch with friends, snuggling together with a load of cushions, talking and laughing. It was honestly a beautiful night. And this kind of affection and closeness is not something I would ever permit myself while I experienced my identity as a costume. But now I have come to see myself more clearly, leave my secret identity behind, this closeness is suddenly something I thrive on.

And these closer, more intimate friendships form a web of relationships that connect me, the real me, to the world, make me whole within it.

I no longer feel out of place. I no longer wear a costume. This is who I am. I’m embodied. I’m here…

I'm Spider-woman.

Multiple Sclerosis targets the optic nerve with frustrating frequency. MS’s cousins Neuromyelitis Optica and Myelin Oligodendrocyte Glycoprotein Optic Neuritis, which are names only useful in answering the most esoteric pub quiz questions, also feature this same challenge, a favouring of the optic nerve as a target for attacks.

Attacking the optic nerves is a challenge because like the spinal cord you’ve only got one set and there’s no alternative route if the information superhighway they represent is damaged. The optic nerve is a particular challenge because while you have one for each eye, they converge into a single cluster of nerves at a junction known as the optic chiasm, which sounds like the site of a climactic battle in d&d. Damage before the chiasm affects just the one eye, damage after it can affect both. 

I have had attacks three times before the optic chiasm, affecting both eyes separately. The worst of these was one of my most severe relapses, which we’ll call ‘the big one’. Honestly as I read my symptom diary they were all pretty big ones. My right eye was one of the first effects of this relapse. The vision became wholly unclear, with massive areas that suddenly looked like I was peering through frosted glass, with little areas of clarity about half the size of an outstretched thumbnail. This was paired with pain and flashing lights in the eye on movement, a telltale sign of inflammation in the optic nerve. 

The eye never improved and I now can see clearly out of only my left eye. 

Less than a year later I had a relapse, with pain in my left eye and a new patch of missing vision just above and to the right of my central vision. That little patch is still a little blurry. 

It’s fair then to say that I am pretty terrified of relapses affecting my vision. Perfectly normal visual disturbances can fill me with a certain immediate dread, as though slenderman has jumped into the backseat of my car and asked me for a lift to the woods. 

Then something happened which has only happened once before. A visual disturbance so dramatic that it broke my emotional state entirely, snapping it like a breadstick between the firm fingers of an impatient diner. 

It happened while I was watching Traitors. Ironic, really, that the real traitor…

…

Was my brain.

I suddenly realised that I could not see people’s chins to look at them. The brain filled in the gap with whatever was around, often bare wall or a loosely skin-coloured surface, with the lower portion of the face gone entirely. I played around with my one good eye, realising quickly that a huge portion of the field of my vision below and to the left of centre was entirely missing. I had a hole in my vision where information should be.

Panic.

This is exactly how a relapse starts. No dramatic arrival, just the passive noticing that a skill you had but a moment prior suddenly isn’t there any more. Like when your car is stolen, you go to use it only to suddenly find it isn’t where you parked it. And you slowly realise it isn’t anywhere you look.

I go to the toilet. This is to where I retreat when things get scary. It’s not exactly comforting, but there’s a mirror, I can talk to myself, and I can slip into catastrophisation in some peace.

Gradually I realise that this patch is actually enormous and that if this is a relapse I won’t be able to drive, I’ll find it hard to read, to see people I’m talking to. No one has chins any more!! How will I know if someone is sporting a beard?! I love beards!!! 

As I’m mourning the wrong thing in the bathroom I try to calm myself down. It’s far too early to panic. We don’t need to worry until this is the case for 24 hours, and even then short-term severity isn’t always indicative of long-term disability. 

I return to the lounge to attempt, in total vein, to enjoy the Traitors while experiencing a panic attack. Then I notice the patch of missing vision is larger than before, much larger. It has started to affect my central vision. I lose the ability to see in detail entirely. 

At this point the panic ends abruptly. The part of me that manages difficult situations draws her sword, snuffs the emotion like a candle, and we get to work. I run through the diagnostic possibilities, opening countless tabs in my mental browser and searching my brain for possible explanations. The worsening is relevant. It gives rise to some possibilities and makes others impossible. Importantly I realise that this is unlikely to be a relapse. Relapses tend to start really really bad and get slowly better; they can get worse but it tends to be over days and weeks, not minutes. 

While I’m thinking, the vision loss expands further and takes on the shape of a crescent moon of missing and distorted vision.

I stop on one mental tab. I know what this is. The crescent moon shape thwarts most other possibilities. It’s indicative of only one diagnosis. This is a visual migraine. It is scary, and frustrating, and basically harmless. It should pass on its own within the hour.

I return to the bathroom to break down more fully. The relief that this isn’t a relapse rolls through me like morning rain, and with it goes the last of my resolve. 

I begin to cry in earnest. 

My vision returns slowly over the coming hour and I regain the ability to see clearly, at least through my one good eye. And I take some time to marvel at the psychological torture I just went through. That someone with MS, and vision loss, should experience a temporary and ultimately harmless effect that, to begin with, looks exactly like a relapse that could leave her blind, is a kind of personalised torment that makes me wonder which deity I must have royally pissed off. I really hope the fates got a kick out of this one. I hope it was worth it. 

And I take some time to be grateful for that part of me who snuffs out the feeling when it isn’t useful, who draws her sword, who gets us to work when things are looking dicey. 

And I am so thankful that this wasn’t a relapse, so relieved, that I feel the weight I carry, that all disabled folk, especially those with degenerative diseases carry. The weight of knowing that moment is coming one day, when what is happening really is the next relapse, the next milestone of progression on this journey to… a nameless dread. The weight of knowing that destination even if we don’t have words for it. 

But I remind myself it is not today, not yet. And so I plan to go out with friends, to laugh and dance, and find intimacy and flirtation and life and remind myself that everything is going to be alright…

…even if just for a moment…

…everything is going to be alright.

This hill is a beautiful beast. 271 metres and an incline of 12.5% considered strenuous for people who can walk competently and ‘are you kidding me?!’ for someone using a wheelchair.

I want to emphasise that I can walk for a few hundred metres without assistance, but after a thousand metres my usually dextrous legs make the steady decline from walking a runway Fall collection to stumbling a runaway fall collection.

And those thousand good metres are on the flat. Force them to climb an incline and my legs will quickly deflate like a punctured bouncy castle, with urgent final bounces decaying slowly into sadness and disappointment.

I calculated this incline at 4.5%. I calculated wrong. This hill is easily twice the height of my last climb, nearly three times the height. Any higher and I'd need an oxygen mask and to take a break at the local ski resort.

At the base of this hill I sat in my wheelchair looking up at the height I would need to travel. I laughed a little. My heart thudded. This was not going to be easy.

I stood, helmed the Rocinante's handles, and began.

Half way up I had to stop for a break. My heart thundered, my body focussed and ready, but my legs felt increasingly weak. Uphill, strength is needed to both lift the leg and to drive the Rocinante upwards and mine were moving with all the structural stability of an underbaked souffle.

With my legs spent for the moment I slid to the ground, locking her wheels in place and resting my back against the Rocinante. And it was here that Luna found me. A woman approached to say hi. She let me know that she had been a wheelchair user some years prior and that she was now an athlete, and that indeed this climb was the fourth time she had reached this hill’s summit… today. She told me about her journey, about her family, and most critically about her evolving spirituality. This was a woman who credited her recovery to divine intervention.

After our little conversation ended we waved each other farewell as I sat resting against my chair wheel. A few moments later I saw her approach again, a touch more cautiously. She told me that she considered her own recovery as due to her faith and she asked whether she could pray for me there and then.

I have experienced people offering to pray for me before. I’m usually frosty in my reception to such an invitation. I’m deeply, unhelpfully, beligerantly independent. My life isn’t one that requires the assistance of any caretaker, much less one of divine origin. And I don’t super enjoy the image of myself reflected back in the eyes of the worshipper. Motivating the offer is a view of me as suffering, a victim of circumstance, bound to fate’s providence as much as to my wheelchair. I know there is some truth to it. This monster will never stop hunting me. And maybe my defensiveness is borne of this same defiance. But I don’t see myself as the victim of its attacks so much as the blade that meets its advance.

This woman’s approach was different, though. She was so cautious and careful and her request came clearly from someone recovering from her own disability. She was a warrior, and if I aspire to become a shieldmaiden she approached me as a paladin. I was warmed by her presence. Today, I felt happy to consent.

She placed a hand on my bare shoulder. And she prayed.

I didn't feel a deific surge of strength, or sudden spiritual power. My legs didn't jolt to life. No angels visited to carry me. And I didn't mind that I wasn't so moved. The journey I am on is not one where I am looking to be fixed. Save the divine intervention for those seeking it. I am happy, nay overjoyed with who and what I am. But I nonetheless appreciated the moment of connection between us, however veiled in religiosity.

Luna kindly kept me company on the last of the incline and we met up with her adult children and husband at the top of the hill. I spent some time with them before they went off to trek somewhere to find food. I sat in the sunshine to take in the outstanding views.

Butser Hill surmounted I wheeled myself recklessly down the hill, holding my arms out and flying for the last 50 metres, whooping and laughing to the bemusement of nearby walkers.

As I reached the car park I flew downhill past Luna and her family. I had beaten them back to the carpark. I mean it was no race and if it had been I'd have lost but maybe divine winds had filled my sails after all. Though it was downhill so gravity might have had something to do with it.

Where next, then, dear reader? I thought that Butser Hill was the highest peak around. But there is one yet higher. Pilot Hill stands at a height of 286 metres and is the very highest natural point in Hampshire.

Come, Rocinante, adventure awaits.

This week I went to Exeter to give a keynote presentation at the Mentally Healthy Schools Conference. This was an outstanding event, exceptionally well organised, and I met so many wondeful people that I was beaming all the way home.

I journeyed up the night before. I stayed in a nice hotel. And I visited a rooftop bar in the evening to get a lychee martini, take in the evening sights, and meet anyone gregarious enough to match my energy.

I spoke with a bartender, flirted a little. My martini was strong enough to resonate around my extremities and emboldened by its spreading warmth I exchanged glances with a man in a distant booth a few times until his companion joined him - a little awkward. And never a confused stare in my direction, no poorly disguised scrutiny of my features, no whispers of confusion or the mocking chuckles I once heard so frequently early in my transition. Instead I find the consistent affirmation of a world that sees me. And under its gaze I am made manifest.

I haven't felt this well, this able to participate in my life since I was first diagnosed. With this adventure I realised that I’m even restarting a process of self discovery that was badly interrupted by Multiple Sclerosis.

When you transition, you have to learn who you have now become. The activities, interests, preferences you had denied yourself for so long because they weren’t ‘typical’ for someone the world thought was a boy, now suddenly become open to you. But without the trial and error, the testing the water, the repeated failures archetypal of puberty, you are somewhat adrift on this new sea. And you must now chart a course. The direction you want to sail depends on desires, interests, fears, that are all suddenly new to you. What you want, what you are capable of, the person you have become, you now get to discover.

Even something as familiar as touch is suddenly a new ocean to chart. Before transition I’d not be able to tolerate physical touch, feeling it alien and even threatening. Early in transition when women would put a hand on my arm or shoulder I’d flinch in response, unable to interpret the act accurately. Now, I’m discovering just how wonderful it is to be touched affectionately. Given that, I begin to wonder whether I am, in fact, quite a tactile, affectionate woman. 

Transition changes your emotions, too. Before I transitioned I’d rarely cry, as though I had forgotten how, and trying to force feeling felt like I was as likely to rupture a blood vessel as squeeze a tear from a duct. But now with estrogen coursing through my veins I find that I am emotional. Shrinking (an incredible show on Apple) will make me cry pretty consistently. So now whether I enjoy crying, whether I want to cry and so enjoy the acts that make me emotional, is one that only discovery can answer. 

With all the foundations of who I am as a person suddenly profoundly unfamiliar I had to learn my own characteristics. At the same time I needed to learn who I was in relationship. Could I be a good female friend?

Did I know how to be?

I started to internalise the complex language of social interaction as a woman. Learning the sophisticated social rules of femme friendship, making mistakes and constantly improving. It was joyous as I began to learn to spot and respond to subtle social invitations, to even make a few of my own.

I was right in the middle of my discovery when a monster I had not noticed in my peripheral vision leapt upon me.

I was barely conversationally competent in my new womanhood, let alone fluent, when MS set off shaped charges throughout my nervous system.

Multiple sclerosis is like any monumental life change. The context of your life diverges from familiarity so significantly that you are forced to become someone new. I wasn’t someone who liked extreme sports. I was too scared to enjoy rollercoasters all that much, let alone activities that were genuinely life threatening. But MS suddenly forces you to live your entire life on a razor’s edge between life and loss. Being constantly close to catastrophe is terrifying, but for me the choice was between either shutting my eyes and wishing against inevitability for this ceaseless ride to end, or throwing my hands in the air and screaming. I now know fear, I know what to be truly afraid of, and because of that I now fear nothing else. 

I wasn’t the kind of person who enjoyed working out, but now here I am climbing St Catherine’s hill pushing my wheelchair in the middle of a 10k roll around the city. MS has made me love friends harder, accept invitations instantly, plan adventures immediately, and just throw myself at life with both hands, knowing that one day I will look back on these times as the ‘good old days’.

But MS didn't just change who I was going to be, it interposed itself right at the moment when I was learning who Cora was, as a woman. And now I need to learn who Cora is as a woman with MS.

So now I find myself sipping a martini in a dark booth in a quiet hotel bar, flirting with the bartender, exchanging glances with someone across the room. I presented in Exeter to a room of 70 people about ‘flourishing through fire’, with the option of telling them I was trans if I so chose, or of keeping it secret. I went out with a new friend to a cocktail bar last night and we chatted and laughed for hours and at the end of the night I hugged her, realised my headphones around my neck were getting in the way of a closer hug, took them off and offered another. Rolling up St Catherine’s hill I met a bunch of people admiring the Rocinante, thinking of her immediately as the mount of an adventurer. And with each interaction I see a version of myself reflected back to me. 

And each and every time I find that reflection entirely unfamiliar. But with each interaction I’m learning a little more of the language in which I can narrate my new life. And I'm meeting the characters that will come to define it.

I know roughly how this story ends, and I know that ending will be tragic, as are many. But the ink isn't dry. And in writing this next chapter…

…I'm just getting started.

Last year I climbed one of the most challenging hills I’ve ever attempted in a wheelchair: Baggy Point in Devon. Narrow dirt paths on a cliffside route in the rain created an ultimately insurmountable challenge. The slippery path became so narrow and steep that my wheels would spin with each push threatening to slide me down the cliffside mere feet to my left. I had to turn back 50 metres from the summit. I still very nearly fell into the ocean. 

I have also been building my strength. My legs can now carry me for much further before slipping into gelatinous failure. I still need my wheelchair, the Rocinante, for long distances, but when the terrain becomes challenging I can get out of the chair to push her further before faltering. And with my arms so much stronger than they once were I can trek for 10k without too much difficulty. In fact the main barrier to longer routes is now not my strength or stamina but my bladder’s hair trigger that threatens me periodically whenever I’m too warm. The urologist has agreed to see me at his earliest convenience… in 7 months. 

The question now is to where I might use my new strength to trek. Having pondered my options I have decided to go and see the sights of England from high up places, journeying in my wheelchair and pushing to the summits to see the views, take selfies (I am a millennial… barely), meet people, and be out in the world. 

This week I began this series of adventures by journeying to the highest point in the very hilly city of Winchester, one that overlooks the entire city: St Catherine’s Hill. This hill has a height of 318 feet (just shy of 100 metres) and has 380 steps you can climb to reach the summit. I discovered to no one’s surprise that these steps are not wheelchair-able. 

Within a few pushes along the gravel path at the base of the hill I realised just how impossible this climb would be while seated. So I stood, shook off my legs’ stiffness, and pushed the Rocinante up the side of this hill. The hill is far too steep to climb directly, especially with a chair, so I circumnavigated the hill while climbing to reduce the incline. 

Through the bushes, the long grass, grinding the Rocinante uphill, I felt my legs start to buckle. This was a considerable workout for legs that rarely take such strain. But I made it very nearly to the summit. I was about 10 metres from the top when I stopped to take in the views. I realise that I didn’t quite make it all the way, and I will return to finish the job, but for now I needed to conserve enough leg power to return to the bottom of the hill.

I mean I was always going to get to the bottom of the hill, but I needed to get there without broken bones. Even with some conserved strength at one point the Rocinante went ahead of me and I caught up with her a little later in a bush.

I managed to get to my destination just in time to watch the sunset over the city. Here’s my shot from the (nearly) summit. 

So what did I learn from this endeavour? First: my leg strength is fundamental to the climb. I could not, even with limitless arm strength, climb this summit while seated. Even if I could manage the Sisiphian task of muscling my 100kg of mounted ass uphill the Roci would tip backward with each stride. It is possible to prevent this by turning and hauling the Roci in reverse, but without being able to see where you're going, you're as likely to wind up in the living room of a local sheep farmer as you are your destination. I think there might be a way to climb crawling with the Rocinante towed behind me by a rope around my waist, but it would be… challenging.

While climbing this hill even I was surprised at how well my legs performed and I’ll be forever grateful to my MS team for giving me the window I needed to build my body muscle. I’m on a virtuous cycle, where my strength permits greater acts of defiance, and those build greater strength. But frequent MS relapses threw me off this cycle every 18 months, for 4 years, and now that I’m not relapsing at all I can take the opportunity to become an MS fighting machine.

I also learned that considerable feats of arm strength will make your arms tired for a few days, but your arms aren’t holding up your body weight. With MS leg weakness, your legs becoming tired means you can no longer walk. For two whole days after the journey I was far more disabled than I am familiar with, being far unsteadier than I’m used to. Over those two days I had to have a great deal of trust that the weakness was due to the exertion and that not only would they improve, but they would be better than before as the muscles repaired and strengthened.

I also learned that gravity doesn’t care if your legs don’t work, it’s not giving you a day off. Coming down the hill is easy. Coming down the hill safely is virtually impossible. There were moments where I stumbled, where the uneven ground gave beneath me, and where my legs themselves couldn’t compensate for a blade of grass out of place underfoot and would collapse like paper straws. It was possible to sit, use the legs to slide my bum downhill, while holding the Roci steady in front of me, but I wouldn’t say it was particularly dignified. At one point I did let go of the Rocinante by mistake and she took off downhill without me, stopping happily in a prickly bush. I will learn.

So what is next, dear reader? Our next challenge takes us to Butser Hill in QEII Park on the South Downs Way. Standing at a height of 889 feet (271 metres) it’s nearly three times the height of St Catherine’s. If one thing is for sure it’s that this one is going to be a challenge. If two things are for sure, it’s that I’m going to wet myself on that journey. 

I will falter, of that I am certain. But I will grow. I will learn. I will overcome.

And I will discover how high I can climb.

I have had a busy week. I love busy weeks. When the MS was at its worst I could not permit myself the luxury. I’d feel good, plan too many meetings, too many social activities, and at some point my energy resources would run dry. It’s like walking upstairs and thinking there’s one more step than there is, putting weight on a foot in mid-air, and stumbling to catch yourself. 

Now, I have much more energy. That I can fill my time with friendship and activities is a huge privilege I will not take for granted.

When things are this good my instinct is to fill my time. To seek out friendship and love. To do everything I can to bring myself closer to other people. To spend the time I have remaining deliberately. With MS constantly reminding me that my time is limited I find myself acting with urgency. I accept every invitation, flying into intimacy like a loving banshee, curling into affection like a stray cat.

Friendship, laughter, flirtation, kinship, all make me feel so alive. I rush from hug to hug, forgetting for as long as I can that I have this incurable disease. As though I can outrun it, as though if I just live hard enough I can live forever.

But MS always exacts a price.

My week ended with a long coffee with a new friend. It was a truly lovely day. We relaxed in a cafe with her dog playing with a nearby toddler, and we had pancakes and French toast and talked for hours. 

I first felt trouble on my drive home. The slow corrosion of a strained nervous system. Nausea sliding inexorably into fatigue. I opened the window and turned down the heat in the car, hoping that my nerves might rest in the cold. But the nerves were strained beyond all recognition and I was possessed by the spasms, spasticity, fatigue and pain that plague all of my kin. I needed rest. Or a priest.

I got home and my wrecked neurological systems started to fail. Nausea pushed me to take deep breaths groaningly, like the last moments of recollection from a night overimbibing in the city. Moving became challenging in the way Squaredle tantalises my academic self-concept, appearing deceptively manageable before rug pulling my self-esteem. My hair trigger bladder even started to stare at me threateningly. 

I rested. I waited. And I wet myself. 

Such a rare thing, sudden and surprising. I stood to fold blankets and simply deposited my payload all over the living room floor like I was an airtanker flying low over a forest fire. I decried the apparent lack of incandescence belying my otherwise obvious heroism and cleaned myself up in the toilet. 

And then it was sleepytime and as soon as I hit the mattress, insomnia. The disease temporarily thwarted my ability to fall asleep and after two cycles of my ‘insomnia management plan’ I finally started to sleep at around 6am.

When I overspend and allow myself to become indebted, the mob boss that is my scleroses always comes for payment with interest. And sometimes wants to break something important when he does just to teach me a lesson. 

However, this organised crime syndicate is surprisingly open to alternative forms of payment, and so a negotiation frequently takes place between me and Al Capone as we find a way to pay that I can afford and that my monster can accept.

The MS is at its worst right now because I haven’t been keeping up my side of this bargain. The deal that “Scarbrain” and I have struck is one where the fatigue, the symptoms, remain manageable so long as I work out for an hour every day. This is known as an obeisance, an act of deference to the disease. It might sound a little fantastic, but my MS fatigue, insomnia, and pain are all responsive to exercise, and so working out is a way to literally keep them at bay. And if I fail to fulfil my end, the MS symptoms will take their payment out of my immobile ass. 

And this is the MS mob. The debt always comes due.

Given that I work out in my wheelchair travelling 5k outside, if it is icy or wet the rims become slick and the chair becomes dangerous to use. I mean I'm ok while moving so long as I don't need to, you know, stop. So if the weather is badly inclement, as it has been, it can be difficult to get outside frequently enough to pay my obeisance. 

I can get away with missing a day, two even, but with pouring rain I missed three in a row. And in the absence of my own offering, the MS took its toll from my soul instead.

When I’m paying I have to rest, I have to get back to where I was. So I cancel plans. I sit here, open a book, and wait. I do my best to quell my anxiety. I understand that rest is important, and that my lack of dependents permits me to rest in a way that many cannot. But I know my time is unpredictably limited and this is time I will not get back. A heavy toll indeed.

So the next day, tired, I push out into the cold morning dew, 5k ahead of me, fate’s contract carved into my essence. I know my end of this bargain. I know my obeisance to these gods. I board the Rocinante, put on my headphones, and glide into the sunrise. 

To whatever end.

Realising you’re trans is a lot like falling in love. No one can tell you you’re in love, you just know it, and once you know it you’re pretty helpless to stop it taking full control of your life. It will make it hard to eat and sleep, it will loom large in your mind at every moment, and the satisfaction of the need it represents is often tenuous, fleeting, and wonderful.

But being trans is also a sacrifice. To much of the world a trans person is unusual, exotic, sometimes even eroticised. And this is never more the case than in the rare experience of trans women who aren't intuitively read as trans.

When I transitioned I did so with full appreciation of the likelihood that my transness would remain visible no matter what I did. I took my first transition steps fully anticipating that my history would be apparent to all who beheld me. But I was willing, perfectly willing, to pursue my womanhood even if it would not be easily legible to the people I met in the street. The pursuit was beautiful in itself, and I knew my gender being hard to read would make space for those that came after, and so I could find meaning in my visibility.

But I found, fairly quickly, that the world began to read me consistently as a woman. And the more time passed, the easier it became. I stopped using makeup to hide features and started to use it as a form of self-expression. I became familiar with my new shape and instead of using necklines to hide the breadth of my shoulders, started exposing them because I liked them. I started choosing clothes that were my own style, that I liked, that fit with how I wanted to express myself. And the more comfortable I became, the less out of place I felt and the less out of place I looked. I became outwardly the woman I had always been inwardly, and I started to feel comfortable, even confident, moving through the world as myself.

But no matter how invisible I have become, being trans isn’t something I can ever truly cease to be. It remains a secret that, socially, feels somehow cataclysmic. Like I’m in deep cover. Like my very nature is clandestine. This is why we call the decision to live without telling anyone about your transition history, living ‘in stealth’.

I went out with a new friend this week. We were supposed to go for a quick coffee and we stayed for over three hours talking over teas and coffees and hot chocolates, laughing together, and becoming fast friends. I talked with waiters and cashiers and customers and of course my companion, and in each interaction I realised just how whole I have become. My voice is smooth and pitched into a comfortably femme register, and I’m confident in how I sound. I was wearing a smart black dress and converse, and had left the Rocinante (my wheelchair) at home. I’d put colour through my deep red hair and have conditioned it so much that it feels full and soft over my shoulders. It isn’t about being pretty, though beauty is a form of armour in the way that clothes and makeup will always be. The joy flows from being visibly, wholly myself. 

We have become friends, my companion and I. And I have not told her that I’m trans.

Now of course my wonderful companion could at any moment Google me and such a search would instantly reveal that I had transitioned, but I’m hoping against hope that she doesn’t. 

I know that how I grew to be the woman others see is a very different story to most of theirs. But with that remaining hidden, people treat me wholly as if I had always been this way. I wish so much that I had. With their interactions communicating this assumption that our experiences are more shared than they truly are, I feel the perfect, euphoric peace of being realized.

I feel the blissful anxiety of such a privileged position. I’m worried people could find out, and that the fragile peace I find in these moments might at once be shattered. I’ve no doubt my companion would treat me no differently if she knew, but I’d see her actions tainted by what she knows of me. I realise that it is my own poison I drink when my status is known. But I drink it all the same.

So what do I do, dear reader? Do I keep this secret safe? Can I? In a world where the internet knows I’m trans all it would take is a curious search and I’d be discovered. Or do I find some way to let her know, hoping all the while that how she sees me will not change, and that I can avoid misinterpreting her benign actions for pity, or hostility toward me for my nature. 

I keep wondering whether there is some magic I have not yet mastered, one where I am confident that my transness does not undercut my femininity. But in this country courts and governments openly declare that our transness does indeed invalidate our womanhood. In this country physical intimacy without first declaring your trans status can be criminal. In this country being stealth is seen as an inherent safeguarding risk, a threat to sport fairness, an imposition on the rights of the people around us.

In this country, stealth isn’t just about feeling valid, it’s about feeling safe. 

But to be fully stealth requires sacrificing everything I hold dear. It means a new job in a new city, with a new name, and worse it requires me pulling up the ladder behind me. Because if no one knows I am trans how can I make space for those who come after to follow in my wake.

So here I remain, both stealth and visible. Hidden in plain sight. And I make friends, and get close to people, and pay for coffee, and get cocktails, and laugh and hug and hope to all the fates that my nature remains secret from them for one more blissful day.

Just one more day. 

Please.

I saw a post from a Redditor whom we'll call StillAir describing the fear of optic neuritis. They describe how they've been blind in one eye since childhood and ask about how people manage the fear of blindness when you have multiple sclerosis.

I'm mostly blind in one eye due to optic neuritis and I have had attacks in both eyes. For sure I know this fear.

But it is true to say that it no longer keeps me awake. I don't think about it often. It’s actually quite a strange thing to think about how different my experience is now. Before, I was constantly mindful of being pursued by a nightmare monster, a creature intent on taking me, blinding me, breaking me. Now I’m still being hunted, but I’ve become familiar with the threat. 

Now that I and this monster have become so well introduced, so intimately acquainted, I have come to understand what it is. I can see it more clearly, the threat it imposes upon our lives, and when I saw Stranger Things I realised pretty quickly how good an analogy it was for this disease.

Having MS is like being hunted by Vecna. 

People who know me well know that I always have headphones around my neck, they’re never far from me. I joke with people that catheterisation takes so long that it makes sense to listen to a podcast while I work. The truth is that periodically I hear the heavy ticking of Vecna’s grandfather clock. When I fumble a catheter, when I bounce off a doorframe, when fatigue grinds me to dust, and indeed when my vision smears and clouds, the scars of our previous encounters flare and the clock echoes down the corridors of my mind. Stranger Things is actually one hell of an analogy, because Vecna finds us through our fear, the memories of our darkest moments, our loss, our pain, and in those moments his voice calls our name and we are reminded we are only a moment from being broken. 

But when I hear his approach, when I start to slip into those memories, into the fear, I put on my headphones, let the music fill me, and find my way back.

Music, of course, is not the panacea it might appear. I can’t defeat this monster with Kate Bush no matter how much the lyrics sound like they could be written about MS: 

If I only could

I'd make a deal with God

And I'd get him to swap our places

I'd be runnin' up that road

Be runnin' up that hill

With no problems

The fear of MS and all it entails are founded in the fear of change, and of loss. But the truth of life is that change and loss are intimate partners to us all. Whether we choose to look at it or not, whether we can tolerate looking at it or not, Vecna threatens us all. And for some of us Vecna is right at the door, and a grandfather clock rings a discordant tone that resonates through our minds far too frequently to ever feel truly safe again. But if you don’t really fear loss, can you ever really cherish what you have?

For me, Vecna’s approach makes me clutch at friendship like a raft in a storm. There are precious moments in my life to which, for the first time, I am fully alive. I don’t have plans beyond a few seconds’ time. And in that time I will seek out and make more of my moments precious. They are where life happens. And my time has become too short to allow any more of them to slip my grasp. But in that knowledge, in that desperation, in the literal holding of a friend just a second longer in that tight embrace, in the tears that tumble when we say goodbye, even in the deepest fear that loving fully means inevitable loss, there is life.

In Vecna’s approach we find the kind of love that can only flourish in the heartbeats that pass between the tick tick tick of his clock. 

And that’s the journey I am now on. I’m on a mission toward friendship, toward intimacy, toward our truest kin. The threat of blindness is just another in a long list of nightmares that come when such a creature decides that his next focus will be you. And of course under that kind of threat anyone would be afraid.

I am afraid. 

But that is Vecna’s gift. When we are afraid, when this monster is right upon us, we pull on our headphones and we find the right music, not because it’s enjoyable, but because it reminds us of the love of our friends. And when we open our eyes it is our friends who are with us, holding us, pulling us home. 

I don't feel grateful to this monster hunting us. And if I could slay Vecna I would not hesitate. But we become a stranger to our past self when we hear the ticking of his clock, when he growls our name. And maybe this new woman is stronger, braver, because she is afraid. Maybe she seeks connection, intimacy, because love is the antithesis of the stagnation and entropy of his domain. And maybe the ticking clock makes more of her moments precious.

Maybe it is the threat of blindness that allows us to truly see what is important.

And when we are scared. We put on our headphones, think of our friends, and find our way home.

I was wheeling on my usual 6k route, rolling on a track that runs alongside a river. It’s rather beautiful. In front of me, rapidly approaching, I see at the last second a dog poop steaming directly in my path. I grab one wheel and turn abruptly to avoid it. It’s a move that will surely inconvenience people, it’s thoughtless, and could even be considered reckless. But I do not want poop on my wheels, my hands go there!

A woman is pushing a pushchair coming towards me when I turn. I suddenly jerk directly into her path. I know I’m clearly in the wrong here. I instantly raise my hands in apology. It turns out that putting your hands in the air while in control of a wheelchair is also pretty unwise and I have to suddenly grab the rims again to prevent myself ending up in her pram. Taking candy from a baby is one thing but replacing them in a pushchair is generally considered uncouth.

The pram pusher is brought to a stop suddenly, she looks at me. 

She apologises. 

I’m so clearly in the wrong that it’s almost comical. I flew into her path, putting her infant at risk, not to save a life, not to avoid injury, but to dodge poop. I'm at best minimising my own inconvenience. I’m a little speechless, and I go to apologise again, but I can’t seem to take responsibility for what was clearly my mistake. The pushchair pusher smiles broadly at me, is effusive, placatory. She’s so quick and firm in her conviction that somehow she was in the wrong that I literally can’t do anything but forgive her. 

This is actually a strangely common experience. When I was in Vienna I was wheeling through a museum at a drinks reception and I wheeled too fast and too close to people standing nearby. I had forgotten that the wheelchair I was using at the time, Firefly, was only barely smaller than a Ford Bronco and I was moving like she was a Kawasaki Ninja. There was a diminutive gap between the back of a woman’s legs and the wall behind her and I figured I could thread the needle. As I approached far too quickly I realised far too late that I could not, in fact, thread the needle.

I caught the woman’s heel with my chair. 

When I hurt her she winced, pulled away, turned abruptly. I was in the wrong, clearly. So clearly that security could reasonably have asked me to leave. So clearly that the international court of justice should probably have issued a formal censure. I couldn’t have been more in the wrong if I’d caught the back of her leg with her car I’d just stolen. She looked around with consternation slipping precariously into anger. I held up my hands. 

She sees me. She sees the chair. Her expression changes instantly from thinly veiled fury to profound understanding, even deference. 

Instantly, she apologises.

The wheelchair, somehow, makes me entirely immune from blame. I don’t really understand why. Maybe it’s the lack of realistically complex disabled representation. The simple sadness or inspiration that we’re always portrayed to invoke means that when people see me they imagine that I’m in need, struggling, in pain, or overcoming the odds, defiant, inspiring. But neither ‘suffering victim’ nor ‘rogueish inspiration’ makes room for the possibility that the person in the wheelchair is just a bit of an ass sometimes. As a verifiable inspiration people assume I must be fundamentally just the very best kind of person.

Maybe it’s more the fear people have with perceiving disabled people negatively. If people see my behaviour as the actions of an ass, they have to reckon with the idea that they might be the kind of person who sees a disabled person as a bit of an ass sometimes. Good people don’t see people in wheelchairs as bad people, that’s something bad people do. The cognitive dissonance is resolved by taking responsibility because if this wheelchair user isn’t in the wrong, they can’t be a bad person.

Maybe it’s the fear of being perceived negatively in how folk treat disabled people publicly. Maybe they secretly do recognise my asshattery but can’t be seen to be angry with a wheelchair user. Being angry with wheelchair users is what bad people who go instantly viral on TikTok do. So they become infinitely patient, limitlessly understanding, and if they do go viral, it’ll be to inspiring music and the applause of viewers. 

Whatever it is, what I’ve come to realise is that when I’m walking I need to take care; I can be considered an asshole if I am one. I’m actually sometimes considered an asshole even if I’m not being one, simply because when I’m walking my disability is much less visible. When your disability is visible you spend a lot of energy convincing people of your abilities, when your disability is invisible you spend a lot of energy convincing people of your disability. 

I went to a show in London and my wheelchair was helpfully stowed until the end of the show. In the intermission I walked to the bar. Maybe it was too hot. Maybe I was too tired. Maybe I was just unlucky. My legs were in a surprisingly bad state, and could barely hold me upright. I stumbled a little to the bar and leant upon it waiting to be served a cup of water, hoping that cooling down would give me a little more strength. There was a queue for drinks that I had cut to lean on the bar, but if I had stood in the queue I’d be literally shuffling on my bum on the floor until I got served. A woman shoved past me to get to the bar, clearly angry that I was cutting in line. I tried to explain to her that the wheelchair in the corner of the room was mine, that I wasn’t intending to cut the line, that I only wanted water, and that I needed something to lean on... But she was having none of it. Her mind was made up that I was some entitled young thing, likely an instagram model, who was happily putting herself ahead of other people, the gorgeous scumbag. 

But when I’m in the chair I literally cannot be in the wrong. I’m suddenly completely immune to judgement. I literally think that if I crashed a car into the front of a jewellery store and started filling my purse with necklaces I’d be in some trouble, but if I first pulled out my wheelchair people would apologise for putting the shop in an inconvenient spot and ask if I needed help reaching the top shelf. 

Either way, walking or wheeling, I’m not a whole person. When walking I’m wholly capable, completely independent, and there are no limits to my physical abilities. When I’m in the chair I’ve never stood in my entire life, my legs are essentially sticks of celery, and there isn’t much point in speaking with me because I probably can’t understand you anyway and, if I can, the main reason to speak to me is to offer help because I’m clearly in need of the most charity anyone in the room can afford. Quick, someone give this poor thing a coat, can’t you see she’s on death’s door here?! She coughed! Somebody call an ambulance!!

Ugh. 

It’s all pretty exhausting, I’m not going to lie. Next week I’m thinking of going to a bar on my own. I’m in Manchester for a night and it’d be fun to meet some people. But the bar is at the limit of my walking distance and if I walk I’ll be stumbling by the time I reach it. So the choice is between using the Rocinante and people only speaking to me to ask if I’m lost, and leaving the Roci at the hotel and the bartender cutting me off for being too drunk before I’ve ordered my first martini. 

At least if I’m in the Roci I might get the drink for free…

I’ve been peeing for a long time, as long as I can remember, and I’ve been using the women’s toilet for well over a decade at this point. It’s deeply familiar. I also know how to stay safe there. I do my best to make myself small, though my 5’11 frame makes it harder to conform to expected diminution. I move quickly, deftly, I don’t hesitate or linger. And I never speak. My voice isn’t deep or gravelly but it’s one of the main ways I feel different to the people around me. I’ve had some ridiculous experiences of women talking directly to me in the toilet, seeing me visibly as any other, admittedly tall, woman. And I do my best to gesture a response, a shrug, pretend I’ve lost my voice, or attempt to answer by tapping out morse code with my nail on the bathroom mirror. 

I don’t think my voice would reveal my transness, indeed I’ve spoken to lots of people and outside of the bathroom no one looks at me strangely. I think my fear is honestly mostly irrational, but being irrational is just a Wednesday at this point and I’m not about to roll the dice on speaking when the context has become so dangerous. The world has become so acutely aware of trans people that I feel suddenly very visible everywhere I go, and never more so than when washing my hands. Washing my hands has become an act of protest. Existing has become a protest.

On Sunday I was out singing karaoke and my friends and I took a break to go pee. Girls and boys are remarkably different in toilets mostly in how we perceive the sociality of the space. Men often wash their hands in total silence. Women speak, compliment each other, offer a listening ear. And my friend spoke to me. 

I had let my guard down. We were having fun. I forgot myself. I spoke aloud.

A woman standing outside a cubicle while her child was inside immediately noticed me, and I saw the tell-tale scrutiny that comes from clockage. She looked at me, spotted my height, quickly eyed my features, and smiled. I know, shocking right? Smiled?! In my direction?!? What kind of clandestine transphobia is this??

It is, dear reader, entirely possible she thought I was gorgeous, or just that I was tall, or spotted that my hair had exploded outward like a dying sun. Paranoia comes with the territory and indeed it’s possible that her entirely benign action is being woefully misinterpreted by a trans woman too familiar with risk. It’s also possible that this woman is writing her own blog about how this tall ethereal woman with incredible hair was looking at her quizzically in the toilet, and that she should mind her own business, the beautiful weirdo.

At this point I do think it would be unwise to ask.

But I find myself ever more self-conscious. I find myself perfecting my makeup, getting the fit right, paying attention to the colours and shapes I choose, to what looks feminising on my admittedly pretty feminine form. The effort is frankly a little embarrassing. And I know life is too short. I know my life is far too short to care so much about what other people think of me, to care how pretty I look. But I do care. I care so deeply. As though I can earn my womanhood with beauty. As though I can only hide within the safety of attractiveness.

No one expects a beautiful woman to be trans. 

This is the predictably upsetting consequence of the public’s changing attitudes towards the trans population. The public statements from authoritative figures. The talking heads online spinning in circles repeating the same refrain everywhere they turn that trans women are no women at all. Each time I hear it, I objectify myself a little more. I look in the mirror and see the unnoticeable blemish, the wrinkle that is as much a sign of all the good jokes told and laughs shared as it is of life’s entropy, the adam’s apple that I refuse to have surgically reduced and that commenters online have literally told me is large enough to hang a coat on, the creak of my voice as it opens to its first sound. I feel like there’s too much of me, that I’m squeezed into my clothes, a simple flexion from my secret masculine Mr Hyde bursting and tearing into view, only barely disguised by my considerable efforts.

I feel monstrous. 

And this kind woman’s smile suddenly carries a huge weight, and I suspect if she did identify me as trans, she knows it too. She has the power in that moment to out me, to draw everyone’s attention to me, to complain about me. In that moment, beneath this stranger’s foot lies my whole world, my dreams, myself. When she treads, will she do so softly, or will she end it all? Without any intention a look crosses my face. My eyes plead.

After this kind woman smiled at me, a totally benign expression mutated by my fear into barely concealed horror, I went back to karaoke. I’m good at singing in a deep register, so I sang in a deeper register. We all laughed together, all sang together, and with my sister we sang Suddenly Seymour almost in each other’s arms. We hugged after. I felt whole.

Today I headed to my therapist’s office. I wore a red knee-length flowing dress with long fluted sleeves, my eyeshadow burnt orange with a gently winged liner. I don’t usually dress up for my therapist, but now I wear my femininity like armour. In place of a long braid wild red hair. In place of a sword my mascara. I walked to a public toilet en route, peeked my head at the signage. A cleaner nearby saw my hesitation.

‘The ladies is over there!’ She pointed. 

‘Can I hug you??’

‘...What!?’

Sometimes I forget that I’m disabled. These last couple of days I really did forget. I know that this is a privilege and I’ll not take it for granted. I went out to see dear friends and I forgot I was disabled to the point that I forgot to take any catheters. I was fine, it was a good day. 

It was a really good day. 

But not all days are this good, and today the disease reminded me who’s boss. The day started and my sleep was disrupted. Nightmares and interruptions and dropping in and out of sleep. I knew things weren't right. 

When I awoke my eye hurt and my vision was blurrier than usual. I mean most of the time looking through my right eye makes it look like it snowed… inside… but this morning reading through either eye was something of a challenge.

My left hand is numb. It always feels like I leant on it for too long but right now it feels like the cast of Le Miserable severed it during the night mistaking it for the head of King Louis-Philippe. I guess it does kind of resemble the French monarchy… if you really squint.

I’m a little stuffy, so it could be a super minor infection, the most mild of colds brewing. Such a simple thing that once was so innocuous, now a temporary catastrophe. My immune cells are alerted to the threat and immediately begin charging straight at my nervous system. It turns out that my nerves look a lot like a cold. You know, if you really squint. 

This is known as a pseudorelapse. 

The worst symptom that flares during a pseudo is one that is usually reserved for too much use of the legs. If I stand for too long or get too hot my core destabilises and my stomach pokes out, and the bulging is deeply uncomfortable, painful even. Right now, it doesn’t matter if I’m too hot, I’m splurging out like I’m made of taffy. 

It’s hard to feel at all ok in these moments. When the systems start to fail this badly I start to panic. Is it a relapse? Is this my new normal? Can I tolerate this being my new normal? Please don’t let this be a relapse. Can I afford to take time off if I can’t sit upright? If I hunch over my desk does it feel any better? If I sacrifice a small animal at an obsidian altar at midnight can I summon the fates to give me one fewer sclerosis, please?

But my pleading is useless. No one is going to save me. 

No hero is on the way. 

I’m sorry, dear reader, but sometimes the emotional experience of it all is overwhelming. Today is a MeSsy day, and there’s nothing I can do. I don’t get to choose what happens next.

But I remind myself that our progress isn’t over just because of one bad day. I’m not done yet, and if I want to earn the ability to thrive I’ve got to first get off the mat. 

I find my reso… 

…nope it seems my psychology has replaced my resolve with full panic. I was totally ready to get up and go work out in the Roci, blast music in my ears and remind myself what I’m capable of when I tumbled inadvertently into despair. Sometimes I guess you've just gotta totally freak out and burst into blubbering tears.

I sit on the toilet, music in my ears, catheter in hand, holding my stomach with the other. Tears just begin falling. It's all suddenly just too much. 

People sometimes think me resilient. I’m not sure I feel very resilient right now. Maybe being resilient isn’t about strength, or an ability to not freak out wholesale. Maybe resilience comes from emotionally detonating and then putting the pieces back together. I mean let’s hope.

Resting in front of the tv my body begins to recover. My strength returns. The pain subsides. My resolve crawls back to me, looking sorry for itself. I refrain from asking it where the hell it has been the past couple of hours. 

And I rebuild. I remind myself of the countless trials we have overcome. Dealing with chronic pain, learning to wheel instead of walk, catheterising thousands of times a year, losing the vision in one eye, freaking transition, getting a doctorate… with each fall we have risen again, harder and stronger. And I know there are foes in this disease against which I have not yet been tested. But if nothing else my life has been good practice.

The really scary thing is that I feel like I’m doing so well, but maybe that’s because I’m not in pain. Today I was in pain and I didn’t do very well. Pain is never far away. 

Get out of here, you French revolutionaries, I said pain, not pain!

I guess there is no way to know how resilient I’ve become. Maybe the next relapse is where it all goes wrong. Maybe I’m experiencing the ‘good times’ right now, the times I’ll look back on rosily when my world implodes. 

Or maybe I'm finally inured to the complete unknowns of the future…

…

Nope, not yet.

Time for another quick freakout.

I’m browsing the MS subreddit today when I come across a poster, whom we’ll call ‘The Rookie’ (intended with affection), talking about the totally valid concerns about relationships, with a sentence that hit me in the feels with all the precision and impact of an orbital bombardment:

‘Who will want me now?’

I’m six years into this thing and for sure I hear you. MS destroys confidence in a few different ways. We’re going to count down to the worst of them, mostly because I’m going to need a run-up.

#5 Feeling attractive 

In film and TV people are frequently depicted as attractive, selected for their attractiveness, positioned in stories as desirable relationship options. I don’t think this is a good thing, it pushes upon us a thin, young, polished, idealised femininity, and a tall, muscular, stoic masculinity. These are often unattainable ideals but creating a visible gap between what is and what should be is where products and services go. Yay capitalism.

Disabled people are only occasionally depicted as attractive, selected for their attractiveness, positioned in stories as desirable relationship options. I’ll be straight with you, we’re rarely included at all, much less depicted as a realistic option for a relationship, let alone as a desirable one.

The problem here is that the moment we enter into disabled life we move immediately and wholly from ‘potential date’ to ‘I didn’t even know you could date’. Capitalist beauty standards are designed to be just out of reach to most people. They’re carefully designed that way. But they’re not aiming for these standards to apply to us at all. The products are frequently figuratively and literally out of our reach.

These capitalist beauty standards are designed to mess with self-esteem, to create low-key shame about our bodies and faces, and that’s for most people. But the bodies, faces and minds of disabled folk frequently fall well short of these standards. So while capitalism etches away at the self esteem of most people, it sunders ours entirely. 

So yeah. You’re going to feel unconfident. But the power these standards have over us is something we can choose to deny. We don’t conform to society’s norms, we never have, and we can be free of them. We can find looks that work for us. We claim our place in this world and thwart the expectations of the beauty industry. 

What is beautiful? 

You are.

#4 Fatigue and giving energy to a partner

Disability is a full-time job. If you’re anything like me, with a full-time job (nearly), then you’re doing two jobs. This is fundamentally untenable. I mean it can be done, but it isn’t anywhere near comfortble. 

Take today for example. Today I was due at a school an hour away for an observation. I’d be around a bunch of children for a couple of hours in a primary school. This was a fun level of challenge on a regular day back before MS was chasing me around like an invisible bear. But now? Things are… harder. 

First I need to manage the drive, which requires me to use a catheter to ‘tap the keg’ just before leaving and timing my water intake so that I don’t get dehydrated but also so that I don’t need to pee. If I need to pee I’ll need to stop somewhere and catheterise. There’s no guarantee of a disabled toilet being available, no guarantee there’ll be sufficient soap or available sink space close to the toilet for me to sanitise my hands so I can catheterise safely. Besides, I’ve only got four of those keg tappers for the day, and I’ve already blown through one before leaving. 

Then I’ll need to move around the school. I need to park close so I can then walk to the school, go in through the gate, register, and go do the observation in the playground where seating is by no means guaranteed. Or I take The Rocinante. The nightmare decision is between the chance of running out of leg power during the visit and risking collapse or falls, or needing to navigate around a primary school in a wheelchair. The Rocinante will draw a lot of attention and I’m not there to be the subject of the observation. Primary schools are less accessible than the London underground and if I wheel up in the Roci I’ll spend the next few hours explaining, apologising, wheely-ing through tight doorways, and possibly flattening a child. 

Then there’s the stress of the meeting, liable to spike my body temperature, numbing my hands and slurring my words. A psychologist that stumbles while slurring her introduction is not the lingering first impression I’m aiming to make. 

And that’s all way before we consider that I only have a certain number of spoons for the day. Spoons, for the uninitiated, are units of energy, once replete and now sparse. If I blow all my spoons in the day doing my job then I have nothing left for family and friends. I’ll need to cancel plans, curl up under a blanket, boil some pasta, and rewatch House. Because that’s all I’ve got left. 

Without energy for friends and family, let alone a date, it’s hard to feel confident. When do I meet people? When do I go out and have fun? Fun was once a thing, right? I’m sure I’ve heard somewhere that people have fun sometimes.

#3 Meeting people from a chair

I don’t know how to make friends from a chair, much less a potential romantic partner. I mean I imagine it’s the same as standing but… it really isn’t. I have to stand to hug someone or they have to stoop to hug me. It takes effort to spend time with me. Getting to a place needs me to plan in advance, or for me to force other people to be as comfortable as I am throwing myself at inaccessible spaces. I’m not an easy option any more. And the thousand little frictions become abrasive, as barriers impose themselves squarely between me and potential new friends and partners. 

This one is hard. 

I don’t have any advice. I don’t know how to do this myself yet. I’m a work in progress, what can I say?

#2 Who even am I now?!

MS forces us to become someone new frequently. When you undergo so many changes physically you have to change psychologically to cope. I never saw myself as anything of an athlete and the largest muscle I had was my mouse clicking finger, that bad boy was stoked. Yet here I am pushing 6k every day in a wheelchair, 10k once a week. 

I used to be deeply risk-averse but what started as a flirtation with risk has quickly become a ‘my place or yours?’ kind of relationship as we become intimately acquainted on the regular. I always enjoyed a panic every now and again but now panicking is just a Tuesday, and anxiety is just another friend with benefits… but the benefits are mostly sweating heavily, breathing hard, a racing heart… so, yeah, a friend with benefits. 

The upshot of all this is that the person staring back at me in the mirror is someone who flies downhill to the open mouths of passers by, who flexes, who says ‘yes’ way more often than she says ‘no’. When I look in the mirror the woman I see staring back at me is not someone I recognise. The physical and emotional changes I’ve undergone are as much a transformation as transition was, and both times I was surprised by the person I became. 

The problem is that we can’t become familiar with ourselves. The things we want, that we enjoy, the kinds of friends we pull close, the kind of partners we’re compatible with, and the worlds we inhabit, are so strange. 

The skin I’m in is so surprising that… I don’t know how to be this person. What am I like now on a date? Can I be funny from the chair still? Will I have the energy to be a good person to be out with?..

Who will even want me now?

Right in the feels, I’m telling you.

#1 Disability is bad.

This one’s the real kicker. When people see us, they don’t easily see us. I’m a lot of things. I’m terrible at planning, I’m gregarious to a fault, I love talking to people and consume intimacy like it’s a good baguette. I don’t understand social boundaries and have no time for them. If someone is willing to get emotionally intimate with me they will find me willing, nay enthusiastic. 

And I’m disabled, but on the list of my qualities and faults being disabled is close to the least important.

But it feels all too frequently like my disability is the most important thing about me. It flavours every interaction like a bad smell. I meet someone I haven’t seen in a beat, we say ‘hi’, catch up, but I can see in their expression they're impressed that I'm still breathing. When I do something really complex like… scratching my arse… people are downright inspired. People say ‘you look well!’ with surprise, nearly incredulity. And they ask about my health. I'm healthy, I'm a health machine, I pushed 6k in my chair this morning! 

I’m more than this chair, I promise. I’ve been reading good books. I’ve been playing Dispatch and Invisigal might be into me and I’m totally head over heels for her. Sure I have brain damage but I want to talk about Stranger Things!

Ack.

You see, this makes it hard to feel confident, even to feel like a whole complete person.

…

Oh crap we get to this point in the post and usually around now I say something positive or uplifting, something about thwarting expectations, about taking up space, about proving preconceptions wrong and being an outstanding date. Confidence is key in the dating world, it’s hot as all hell, and being confident with a disability, especially from a chair, only amplifies its effect. 

But, The Rookie, you're not alone. I frequently feel unconfident from the chair.

And maybe that’s ok right now, confidence takes time, and it takes doing the thing to achieve. I’m off out tonight to a show in London, and I feel the unspoken boundary I’ll need to cross to do so. It’s a lot. I’ll need to navigate trains and the tube. I’ll be in the accessible seating area watching from the Roci. I’ll be immediately different to most everyone else, though maybe I’ll meet some incredible disabled girl who gets it, gets me, and doesn’t mind that I’m trans. It’ll be trickier than it should be. But doing the thing, finding connection, making friends, is how we become more confident. 

We do the thing. We put ourselves out there. We open ourselves up to the experience. We pick up our feet. We let go.

And we see where we get swept off to.