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. 

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.

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.

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.

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.

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.

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'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.

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 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!?’

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.

‘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.

I know that my view of myself piloting my wheelchair, the Rocinante, is dangerously quixotic. I love the vision of myself as something of an extreme sportswoman, flying downhill, skidding around corners, chasing the high. But that view of myself makes me a little too comfortable with risk, possibly even reckless. I think the closer I am to trouble the more invincible I feel, and that pushes me to try ever more dangerous feats of wheelchairing. I'm wheeling on a new route today. This one is just over 10k and navigates in a full circle around the city. The first couple of kilometres are uphill beside a busy road.

And it is here that disaster finds me.

I wheel on a pavement beside the road. It is narrow but passable and I don't feel at risk even with the cars flying past nearby. The pavement ends at a wooded offroad trail. The problem is how the pavement ends. There is no curb cut. The pavement ends in a curved drop to the road. The autumn leaves obscure the edge and I know deep down it would be risky to attempt it. But that vigilant part of myself draws her sword and we approach the curb with confidence, caution, and control.

And we fail.

The left wheel slips on the leaves and plunges off the edge of the pavement, leaving the right wheel behind with me sitting at an angle. For a brief moment I think I might be safe, tilting but stable. I roll my eyes and consider how to proceed. 

The chair tips.

The chair tipping sideways is a crisis. There is no way to compensate, no way to rescue yourself, and it’s a long way down. I become a total passenger as the chair falls and throws me into a busy road. I land hard on my left side and roll onto my back. 

The workout, the adrenaline, piques my body temperature and I lose core motor function. I test my movements but can’t sit up. So I lie in the road for a moment, the Roci prone nearby.

Cars stop, men rush out and hurry over to me.

With time I could cool down, find the strength to rise independently. But I'm in the road. Cars can't pass me. I need to move now and even the vigilant part of me knows we can’t do this alone.

Multiple Sclerosis forces you to become someone new constantly and today I don't recognise myself. For all my strength and strident independence, for all the belligerence and defiance, for all my quixotic idealism, when I hit that road I find that I am suddenly totally helpless.

I keep a mind to my voice. Especially when I‘m this vulnerable I can't let anyone spot that I'm trans. Even spontaneous moans of pain need to be in a femme register. Intersectionality threatens to hit me harder than the tarmac.

A kind man finds me, reaches down to help me off the ground. I put my arm around his neck and he lifts but it becomes clear to us both that my legs will not function and he can't lift my dead weight alone. He calls to a stranger. I put one arm around each of them and they lift me wholesale into the air, my legs dangling. I have never been carried before and I giggle my surprise as they lift me back into my seat.

I’m hit with a weird sequence of emotional reactions in succession. I first feel grateful. I can’t believe two strangers have put hands on me so quickly, eschewing social norms to rescue me. They are so careful, so thoughtful, they check in with me, and there’s no doubt in my mind, as my legs dangle uselessly beneath me, that they are saving me. Against my better judgement being lifted by strong men is also… oddly affirming. I know it’s not the most feminist act to play into the ‘damsel in distress’ trope but… it was kind of awesome, what do you want from me? I also feel suddenly deeply vulnerable. I’m being lifted into the air, and if these kind men put me down on a log rather than my chair then I’m staying sat on that log for a while. I know they’re not going to put me on a log… but they could… and that’s a lot of control to relinquish.

And I feel like a fool. It is nothing but fortune that no cars were passing when I fell into the road. Today I was in real danger of serious injury. Today, I really fucked up.

Back at the helm of the Rocinante I feel my freedom again. I explain how this happens from time to time, thank my heroes profusely, and get myself and my ship back into shape.

In one sense I'm proud that I didn't decline the help of these kind heroes. And I'm so deeply grateful that they moved so quickly, so selflessly, to help that I'm misty just thinking about it. 

In a whole other sense I'm relieved that these amazing people didn't clock that I was trans. I know that shouldn't matter but it does. If, while carrying this helpless woman, these kind men clocked me, I don't know what would happen next. This is a low level anxiety experienced by all trans people, I’ve no doubt, but when two men are within inches of your face that fear becomes acute quickly. 

There’s also a defiance. That curb should have had a curb cut, it’s a path people commonly use. That it didn’t have one left me with a difficult choice of turning on a dime and wheeling back down the hill to a curb cut, crossing the road, and then climbing the same hill and crossing again further up, or attempting to wheel down the curb. 

Was I wrong to make the attempt? I think so, yes. 

Would I make it again? You’re goddamn right.

I tried my best. 

We were out late at clubs dancing with strangers, back at first light. I was destroyed by hangovers in a way that felt like my soul had evacuated my body. I'd had hangovers before but this felt like my bones were staging a protest. MS fatigue before I knew it was MS fatigue. But I loved every moment. 

Yet I looked at that photo today and tears streamed down my face. I realise I write a lot while crying and you may well think me emotional. In truth I rarely cry. But when I do, I write. 

It took me some time to understand my feelings. Why in the world would seeing me that happy evoke such a reaction? 

Well… I just don't feel like her right now.

Let me explain. When I first felt like I had arrived in my transition it was only about a decade ago. I was in schools regularly, doing the job of Educational Psychology. I was on the waiting list for surgery. I didn’t know I had MS. I was presenting at conferences at the start of my career, laughing with audiences, loving every moment. 

It was at that time we went to Ibiza. It was one of the first times when I did something so… girly. We got made up, dressed up, went out late, fought off overenthusiastic men, found female kinship. 

That was the first time I felt fully realised. When I look back on that photo, she’s smiling from every cell, and I envy her. Not that she didn’t know she had MS. Not even that she looks confident, I know she was anything but confident. She felt like her invitation was a kindness, that she didn’t truly belong, and my confidence has only since grown. 

I envy her for the world she inhabits. 

A decade ago the world was so different. People thought of trans women as women far more readily. Harassment of trans women was common but not as common as it is now. And we didn’t have a human rights watchdog seemingly wholly set on removing our rights, that invalidates us as women in such a fundamental way. 

And then there is the hate online. I have been receiving A. Lot. Of. Hate. For some reason a group of people have made a mission of calling me a man, including one very influential person with hundreds of thousands of followers. I'm used to it. And I'm receiving far more love, more solidarity, than I'm receiving hate. 

I want to be impenetrable. To own who I am to the point that their words cannot affect me. This is why I’ve been so open about my gender, because if I own who and what I am then I become invulnerable to its weaponisation. But this hate has pushed its way in, its insipid effect proliferating through my system like psychological sepsis.

It’s like I’ve stopped breathing. I only realise when someone offers a sliver of affirmation. A guy came to my door yesterday and we got talking, of course, and I know he was aiming to sell me something, but he referred to me, totally off the cuff, as a ‘gamer girl’. Suddenly oxygen. I breathed it in deep. The moment poured into me. To this guy it was a Wednesday afternoon and this woman just wasn’t going to buy anything at the door, a bad afternoon for him. To me I suddenly came to life again. 

It keeps happening, the little moments of tender affirmation are like a breath of wind in a stifling room. I pursue them, seek them out, and fleetingly try to live inside them. 

And that’s what I envy in this version of me just a few years ago. To her, she felt like she didn’t belong, like her invitation was a kindness, that she might be just a facsimile desperately trying to be and never quite realised. But the world affirmed her. It welcomed her, and she flourished under its gaze. Now I am realised, confident. I know I belong. But the world has begun to exclude me. In dark and quiet moments our Supreme Court, the Government, the EHRC, and countless commenters online whisper to me ‘You’re no woman’. 

I realise now what a contest my emotional wellbeing has become. On one side we have the entropic corrosion of a world telling you that you're a man. On the other you have the life affirming experiences of being a woman in the world, of being seen, liked, as the person you are.

While I’m typing this post my computer pings that an email has arrived.

No word of a lie, an email literally just popped into my inbox from the Gender Recognition Panel. I’m literally sat here in tears as I write about that wholly indescribable feeling of being so fundamentally invalidated and an email with such profound implications for my validity is now sitting in my inbox. 

I open it. 

The panel have granted me a full Gender Recognition Certificate. In the midst of so much invalidation I am here, beaming, as I’m validated by the only body in the UK that can. They’ve come to recognise me as a woman so profoundly that they’re going to change my birth certificate.

Invalidation meet legal recognition. I know I shouldn’t need validation from anyone to know who I am. But that isn’t how my psychology works. My femininity, my womanhood, vaporously slips through my fingers whenever I grasp at it. And people telling me they see me for my authentic self… is everything. So I hold this little certificate close to my chest and inhale the moment. As though I can hold my breath forever. And as the quiet of night settles around me. I sigh back to the darkness…

‘…I’m me’

The problem with inclines isn’t strength, but balance. 

When I’m pushing uphill my arms are strong enough to bear the weight of the chair and my ass together. But when an incline is too steep, pushing the chair uphill risks tipping it backwards. It’s honestly terrifying when you push forward, lean as far into it as possible, and the chair tips back. The only way to recover is to release the wheels, roll back, and spin round to face downhill. It’d be fun if it wasn’t such a visceral experience.

My stomach is in so many knots by the end I need an experienced sailor to help me relax. I mean I’ll never turn down an experienced sailor to help me to relax. Wait, what was I saying?

One of these hills is, ironically, an installed ramp offered as an alternative to the steps on a ‘shopmobility’ route. This ramp has such an incline over 10 metres that it requires gargantuan effort and a stomach of stainless steel to overcome. But I’m nothing if not adventurous. 

Importantly, I can overcome this hill. I don’t look particularly graceful, there is a fair amount of grunting, sweaty muscular effort involved, and that’s before the experienced sailor shows up, but I can do it.

On my 10k it’s really hard because this hill is about 7k into the push, and I’m already tired. But I can. Do. It.

I take a run-up. A roll-up? I hit the hill and grind my way up it.

About half-way up a man approaches me hurriedly from behind and says something to me. I can’t hear him. I have noise cancelling headphones on and removing them requires my hands, which are in use right now. Without being able to hear him I know he’s offering help, because people are coooooooonstantly offering help, often multiple times a day. I decline instinctively.

I suddenly feel hands on my chair and, smiling, this man pushes me the last several metres to the top of this hill. 

Of course this is one of those fun juxtapositions in perception. To this guy he sees a young woman (let me have this, ok?) struggling up a difficult hill. He hurries over, steps out on the ledge for her, and rescues her from the unfair challenge such a hill imposes. The world should be more accessible, but when it isn’t at least there are still heroes who will help.

To me, I’m on my regular workout lifting weights in the gym, when someone comes over and offers to carry them for me. When I protest, a little confused, and politely tell him I’m ok, he takes them off my hands regardless and, smiling at his heroism, lifts them for me. 

It’s that weird.

We’ve talked before about the challenges offers of help pose to the self-concepts of disabled folk. When I strive to see myself as overcoming, others see me as struggling, and honestly neither narrative is really accurate. I’m just on my regular walk, neither overcoming nor struggling, just pondering whether I can get away with grabbing a coffee on my way home and wondering whether the barista will pay me a compliment today, as she often does. I’m such a sucker for sales strategies. Say something nice about my hair and I’ll buy you a coffee… I’ll even share my experienced sailor with you.

So I reach the top of this hill and, of course, I thank this kind man profusely. I don’t want to have to manage the emotional fallout of me protesting a stranger putting hands on me. When he realises what he’s just done he’s going to feel really bad about himself and it’ll be up to me to reassure him. I don’t have the patience right now. So I thank him and do my best to look relieved. I even consider swooning a little. 

Then I roll myself back down the same hill, turn at the bottom, and start to push myself back up it.

A few moments later I see another man run toward me. He’s offering help. I decline. He reaches toward the chair. I decline a little harder.

A strange dance takes place where the man kind of spots me. He puts hands near the chair, but not on it, in case I start to slide backwards into total chaos. I imagine to him this woman is moments from catastrophe, and when she almost inevitably fails she’s going to fly, somehow, into a nearby river and he could have stopped it. Why didn’t he stop it!? He had the chance to be a hero and he let a little thing like consent get in the way of saving a life!!

I finally reach the top of the hill. I thank this man and, what is now clear, his friends for all protecting me together. I explain that I’m trying to work out here and they look at one another, nod confusedly.

… trying to work out what?

MS had other plans. 

A relapse targeted my spine leaving me with something akin to an incomplete spinal injury, a section of the spinal cord that could no longer communicate consistently or effectively. My legs were weak and I couldn’t walk for more than 12 minutes, and running was only wise to attempt during the zombie apocalypse. I would almost certainly become one of the walking dead. Well, one of the crawling dead at least.

I started using my wheelchair and honestly had no idea where I’d get to. I had become intimately familiar with the profound lack of control I now had over my own life, and the wheelchair was no exception. I would wheel as much and as far as I could, knowing that at any moment a relapse could end my adventures, and we wouldn’t worry too much about the destination. We’d discover what was possible.

Today, I completed my first 10k workout in my wheelchair, the Rocinante. 

We wheeled offroad, through fields and dirt paths, through tunnels of trees and past hills tall enough to see the whole of the city. I took the MkII flywheel with me, pushing on gravel paths and over tree roots jutting out of the ground. I have a little mobile phone holder on the front of the chair with my route glowing and music in my ears. 

I even went through a kissing gate. 

Kissing gates, it turns out, are the biggest challenge I’ve ever faced in the chair. More of a challenge than the entrance to that pub that tried to throw me from the chair. More difficult than the gap between the train and the platform edge on some tube stations, down which I imagine you can find Bilbo trading riddles with Golem. Harder even than the hill known only as the ‘widowmaker’ to overcome. Kissing gates are a true obstacle. 

For the uninitiated kissing gates are designed to prohibit livestock and cyclists from passing through. They require opening the gate from one side, stepping inside, then sweeping it past your body to reveal the exit. For walkers this is straightforward. The space inside is easily large enough for a person to stand within, and steps, stones, unstable terrain, overgrowth, aren’t really problematic. For a wheelchair, this is very nearly impassable. In these kissing gates the space in which to ‘stand’ is only barely large enough even for the sleekness of the Roci. The terrain is usually not stable, it’s overgrown, and sometimes there is a large stone to step up to stand atop.

My approach has become thus. I wheel right up to the gate, remove the MkII. Without the flywheel I can no longer navigate on unstable ground but I cannot fit the Roci inside the gate with it attached. I place the flywheel unstably on my lap. I reach over and open the gate, push it open. It clatters against the other side to let me know it’s in place. The gate will not stay that way. I have moments before it closes independently.

I wheel myself into the opening and grab hold of the rails that hold everything together. I haul myself and the chair into position manually. This is the real challenge, I have to get everything into this small space without losing the MkII, without falling, and before the gate closes on me. Once in place, I pull the gate across, and then wheel the chair over unstable ground to get out of the gate. This means, without falling, I must wheelie the chair and roll on two wheels over obstacles to reach safer ground. Once there, I replace the MkII, cautiously greet the cows that have curiously approached, and push on.

There are four kissing gates on my 10k route, and I went through them all. I did get some help from some kindly passers by for some of them.

So now I am able to go 10k, what is the next adventure?

My ambition is to take the train to a destination, display my offroad route on my phone, and wind my way home fully independently. Oddly the biggest challenge here isn’t the distance, though consistently pushing 16k every day over multiple days is my long-term ambition (I have a secret project I’m working on), it’s my bladder. On a good day, when I can catheterise freely, I can buy myself a few hours before the alarms start ringing. But it’s not consistent. Frequently I’ll find those alarms ringing earlier than expected and rarely I’ve found myself unable to reach a toilet before riverbanks break. When I’m too hot, like when I’m exercising, I have virtually no control over the riverbanks and, when the alarms do sound, we’re in real danger. This is a problem I’ll need to creatively solve as my distances increase. 

The other barrier, which I first discovered on the cliffside routes in Devon, is terrain. Fine, tightly packed gravel is totally wheelable. Larger stones are a huge problem. I can wheel over them, but my poor body was not built for being shaken like I’m in the middle of a mosh pit at Reading festival in the late 90s. Loose gravel is also something of a disaster. The wheels spin on the gravel, and with the force I apply through the wheels the sudden loss of resistance wrenches my shoulders suddenly. Honestly, I’d not be surprised if I dislocated a shoulder one of these days. 

My ambition to go further on unfamiliar routes is for sure going to be a new series of challenges to face. But this is what we do, we tackle one at a time, try solutions, make mistakes, get injured, recover, try something new. Because tomorrow I could relapse and it could all be over. So today, we plug in headphones, we throw ourselves at kissing gates, we hurtle through gravel…

… and we discover where we get swept off to.

And I quickly faltered.  

There’s a wild juxtaposition between my physical strength and my damaged spinal cord. Pulling out a double bed frame across the carpet is easy. Bending to pick something up from the carpet is nigh impossible. 

I pull out the bed, I'm strong enough now to lift it fully if needed. But I need to get beneath the bed to clean and bending low, especially crouching, pushes trains of impulses through demyelinated spinal nerves. They’ve adapted, and they do their best with the extra sodium channels they’ve created to keep the messages flowing through. But those sodium channels are working overtime and leeching potassium ions as they do, which makes it impossible to polarise. Imagine your car runs out of petrol, but it has adapted to be able to use rubber for fuel, with the upshot being that your tyres are balding as you drive. Sure you can drive for longer, but you’ll be running on the rims before long. I’m running on the rims, sparks flying out of the sides of my body every time I bend over to hoover another mote of dust. 

I bend low one last time. There is so much more to clean and I refuse to stop before the task is done. Somewhere inside I hear a sword being drawn. But there is no more power in my legs and I crash onto the barren rungs of the bedframe.

I start to panic. 

Being unable to move parts of yourself elicits a very particular emotional response. The more you panic, the less you can move, and the more vulnerable you feel. Indeed the more vulnerable you are. And so a cycle begins where your body begins to fail, you begin to panic, and one by one additional systems start to tumble into ruin. So I lie there desperately trying to contain my feelings. 

I hear that part of myself, sword drawn, call my name: ‘listen to me’, she says. And then simply ‘stop’.

I’m reminded that this thing I’m trying to do is not important. That maybe right now, in the way I’m trying to do it, this task is impossible. There are few experiences more disabling than this realisation. A naked resignation. 

I take some moments and just breathe a little. The valves of my respirator, necessary when cleaning while immunosuppressed, click in and out rhythmically with each breath. After several moments I find my resolve. I grab hold of the furniture and heave myself to standing, and I start the slow, sad shuffle back to my desk. I sit. And I start to write. 

Caz messages that she will help me and we decide to book a chance to do some of it together.

And gradually I begin to piece together the fragments of myself. 

As I reflect upon the total disaster that was my effort to clean my bedroom I’m struck with the realisation that this challenge is not like other challenges I’ve faced. It does not respond to effort. 

Getting my doctorate, transitioning, pushing the wheelchair up a mighty hill, were all difficult. But they all responded when I put in the work. I’d be up late at night in the post-graduate room at the University, music playing, drinking coke and eating pasta from the student union, writing my thesis until the sun came up, and I’d get through it. I’d learn how to dress for my changing body, I’d learn to do makeup, I’d train my voice, to look and sound as close to how I saw myself inside as I could, and I’d get through it. I’d look at that beefcake hill ‘the widowmaker’ with envious eyes and I’d train every day to overcome it, and overcome it I would. 

But cleaning my bedroom, walking up stairs, bending low to organise the fridge, are all challenges that do not respond to effort in the slightest. In fact, effort that pushes my body and makes it hotter actually makes it less possible to complete the tasks that require those damaged spinal nerves. 

When I’m confronted with cleaning the bedroom, a task that requires legs, I cannot face it with characteristic determination. My legs will fail despite every effort, and I’ll hurt my back trying to lift without leg strength, trying to stand upright without core strength, and I’ll injure myself long before I get anywhere near finishing the task.

So what is left? When determination fails, what do we then turn to?

Acceptance.

I must accept that despite all of my efforts, despite Saturday pushing myself in my wheelchair offroad, uphill, thousands of metres to a golf course, I cannot stand to drive a ball. Despite being able to carry my wheelchair in and out of my car easily when I’m in hospital, I cannot walk independently so far as to get a simple blood test. Despite being able to lift a double bed with my bare hands, I cannot clean beneath it. 

But I find that really hard. My instinct, even now, when I think about the mess that remains beneath that bed, is to confront it. I’m not built for humility. When I think about tacking the bedroom again I hear that vigilant part of myself slowly draw her sword as she says to me quietly:

‘Let’s do this.’

‘I’m heading this way anyway, I can push you if you’d like’

I’m met with the slightly awkward smile of a man who is clearly pushing past the usual social boundaries to be kind. He’s taking a step out on a ledge for me here. It is kind. And that I live in a world where strangers offer me help is something I just can’t get over. It’s truly wonderful.

But I’m on my daily ‘walk’ when this guy approaches. I realise I’m rolling, but that’s only because I can’t actually walk. This is still my regular routine. I want you to imagine you’re on your daily walk and some kind stranger taps you on the shoulder, gestures at the path ahead, and offers to push you. 

It’s that weird.

And we both feel it. The awkward little ritual of thwarted assumptions familiar to me and surprising to him, begins to play out. When a well-meaning conversational partner is faced with just how distant their understanding of a situation, of the person they’ve approached, is from reality. When they realise how little of a cliche you are, and how much of a cliche they have just become. 

It’s uncomfortable, but I do my best to reassure him with the thing I say to all who faux pas in this way.

‘You’re ok’

The one-off offer of help might strike you as odd, but you can chalk it up to one of those unusual but benign interactions you’ll tell your friends about later. But if it happened again on that walk, if it kept happening every time you went out for months and years, you might start to wonder whether there’s something up with your walking. You might start to become oddly conscious of it. You might feel strangely visible. You might look for what was apparently wrong with you.

This is the problem I’m facing.

Back when I was using my wheelchair for the first time I was weak and struggling and I could understand the offers of help. I looked vulnerable. I was. I’d roll inadvertently into roads, I’d slide downhill, and I’d fall right off the chair pretty frequently. When this overenthusiastic wheelchair user is splayed out like an upturned turtle, offers of help are totally understandable.

But now, I’m strong. After this friendly guy had offered help, and after I’d declined, I overtook him on the uphill climb. I refrained from stopping to gesture at the path ahead and offer him a push.

Now, in my strength and competence I’m struck by just how dissonant the assumptions about me have become. The preconceptions haven’t changed and people make them with such unconscious confidence. The guy tapping me on the shoulder wasn’t questioning whether I needed help, he was sure of that, but whether I would accept it.

And it isn’t just offers of help. I was in hospital for an MRI recently and the kindly nurse who walked beside me to the machine mentioned that her children ‘are still in secondary school’ with a tone that implied that she thought I was too old for children of a similar age. The woman and I were around the same age as far as I could tell but she was so confident that I was somehow much older.

Then there was the guy in the street looking to engage in some market research, clipboard in hand, who approached me with jazz hands and a musical ‘hiiiiii’ assuming I was much younger than I am, or perhaps assuming that I would have difficulty with language or interaction. 

Then there’s the kind woman who assumed it must be my birthday because there was no space in her world even for the possibility that someone in a wheelchair might be taking her girlfriend out for her birthday. 

Then last week I was out with a friend at a restaurant and the staff bringing the bill handed it to her, confidently assuming that she’d be paying tonight. 

What is being reflected back here is a view of myself I don’t implicitly share, one that doesn’t match my experienced reality even remotely. In their eyes I’m old and infirm or I’m young and incapable. I’m in need of charity or receiving it. I’m suffering, helpless. 

But I’m not any of these things. I’m far from helpless. I’ll take on a kissing gate. I’ll throw myself over the gap between the train and the platform edge. I’ll wheel myself to work, teach from my chair, wheel myself home. I’m a registered educational psychologist, a research director, I have a doctorate!.. 

You might detect, dear reader, my defensiveness. Asserting your self-image in the world takes effort when people don’t easily see you. In most encounters people make assumptions and sometimes they’re wrong given the unconscious biases that inform them. But the assumptions about me in my wheelchair are so deeply wrong, so confidently held, that I feel I have to challenge people just to be seen.

And they then feel guilty. 

Faced with the wrongness of the assumptions they have made, people frequently feel bad about themselves. Well meaning people will make these confident assumptions fast right at the start of the interaction. There’s no time for me to inform their preconceptions. To expose myself in my authenticity before they’ve formed their beliefs about me. So when I do enter the interaction, start to speak, I sunder those preconceptions in a way that is very visible. And they feel guilty, sometimes mortified. 

My instinct, then, is to protect their self-esteem, to be understanding, limitlessly forgiving, overtly happy, even apologetic.

It can be exhausting.

But I remind myself of their kindness and of the opportunity for genuine connection that can only flourish following their presumptions going up in flames. So we are genuine, we watch their expectations catch and burn, and we say that thing we say to protect them while they psychologically recover…

…‘You’re ok’

I’m not going to name the restaurant because this story kinda offers a gentle criticism of one of the staff there, but I do want to preface this story by saying that the restaurant and all the staff were absolutely wonderful and if we could look at the bill without passing out cold we’d for sure go back soon.

When we arrived I was using my manual wheelchair, the Rocinante, and we’d been rolling around London all day. I’m strong now, capable in the chair, and there’s almost no terrain, no distance, I can’t blast my way down. 

We told staff that we had a reservation, they found it, and they clearly had somehow identified that we were here for a birthday. This is true, what the voucher from our friends didn’t cover I’d be paying for today. I was taking my wife out for her birthday. 

In the entrance room, a member of staff looked at me pointedly. She was pretty, what do you want from me, and I almost blushed at her direct glance. She got closer and clasped her hands in front of her.

I looked up at her. Inside my mind I heard someone say ‘Uh oh’.

She looked down at me, bent low, and exclaimed in a kind of sing-songy voice ‘Happy Birthday!!!’

I’m bamboozled. I looked at her with total confusion on my face. Her face was implaccable, my disorientation did not surprise her. 

We got to our table and several seconds passed before I finally realised that this kind woman had made the confident assumption that I was there for my birthday because I was using a wheelchair. I put the pieces together pretty quickly after that and deduced what this must have meant for how I looked to at least some people. I swallowed my pride for the rest of the evening, promising to write to you to tell you.

We’ve talked before about not feeling attractive in the wheelchair, not really feeling like a sexual being at all, and indeed we’ve talked about the temptation for people to treat me in a kind of childlike manner. It turns out that the sing-songy voice and the clasped hands are the hallmark mannerisms of this kind of interaction that, still, is extremely weird to experience. It’s so odd that it feels like a hallucination or a dream for a moment. It transgresses all the social rules with which I’m familiar so sharply, it honestly takes me a beat to find my words. It feels like saying anything is going to have implications. If I react with confusion, as I did with this woman, it feeds the conclusions they have already made. If I say something like ‘well it was Emerson who said that the years teach us much which the days never knew but on this day the year’s celebration is not in fact mine’ then I assume she’s going to feel really weird and I’m going to look like a bit of a nob. 

So the conversation just… stops. 

I realise this woman meant no harm and I don’t mean to be critical, but her approach tells us something about how she sees me. This isn’t just about attractiveness, though I’ve no doubt she has not considered that I might in another world be dateable, that I’m actually a great date. I like to think I’m funny and charming and frankly amazing in bed, mostly at sleeping, but still. This isn’t even just about infantilisation, though the sing-songy voice and clasped hands did make me want to ask to do some finger painting before dinner. This is something even stranger. I think this kind woman, naive to her own perception, saw me as fundamentally different to her. In this woman’s imaginings there was no world in which I could be taking my wife out to dinner. She was so certain in her assumption that she publicly wished me a happy birthday.

It became clear to the restaurant staff that I was indeed taking my wife out to dinner, and they treated us with the utmost kindness throughout our meal with them. It was a truly wonderful evening. 

But this moment has stayed with me. Recently I’ve had a few challenges to the concept of my selfhood that I work to maintain. I like to think of myself a rogueish corsair, a dragon rider, flying from place to place aboard the Rocinante, thwarting every rule and expectation, dashing and debonair. And when this woman looked at me… all I saw reflected back was… sympathy.

So today I decided to remind myself of who I am. I took the Rocinante out for my 6k workout before heading to my hairdressers for some colour and a sleek blow dry. I did my makeup, got the fit right, wide leg jeans paired with a v-neck. At the hairdressers I took a look in the mirror, tried to remind myself that a woman in her 40s can still be beautiful when I heard a customer behind me approach my hairdresser…

‘Is your client trans?’

Motherf—