Introducing Snowfox

I have at long last launched a creative writing project. This is something I’ve really wanted to do for a while now but ironically enough could never find the right words. The idea for a writing project came to me almost a decade ago now whilst working in the great outdoors. The concept of a music album consisting of its separate tracks that intertwine to create a “bigger picture” really intrigued me and was something I wanted to apply to writing.

I’ve launched this project today alongside a small collection of new entries entitled “Apollo”. It’s about things that have stuck with me over the last decade of my life, some of which are based off ideas and early drafts that have existed for some time now.

Thank You for your continued interest and support in what I do. It means a lot.

My AMN story so far

I recently shared my experience of being diagnosed with AMN in my early twenties with Alex TLC - the charity that represents me and many other people up and down the United Kingdom who have leukodystrophies.

It was important to me to be transparent about how it started to present itself, what’s transpired along the way and some of the things I’ve learned from the whole shebang in the hope that it might be of use to someone in a similar position, as well as to raise some awareness around it too.

I’ve reproduced the text from the website below so that if the link ever goes offline it’s still viewable, but if you’d like to read it directly on their website then you can do so here.

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It was around late 2017, aged 22, when I first started experiencing issues. Life was otherwise good; I was in a stable relationship, we had a son together, I was working part-time and studying part-time with The Open University for a degree in IT & Computing. I worked outside in the family tree surgery business in quite an active role so it was immediately noticeable when I managed to trip up and fall over several times due to a slight variation in ground height because my feet had been dragging. I remember thinking it was strange, and because I’d knocked my legs or knees at a funny angle against the ground I was unable to get up for five or ten minutes because they had gone completely numb. The first few times it happened I tried to downplay it to myself as a coping mechanism but as time went on it continued to occur, and before long it was clear I needed to get answers so I contacted my GP a few months into 2018.

It was swiftly triaged and the first appointment I had was with the muscoskeletal specialist at my doctor’s surgery. Going into the appointment, I thought it was perhaps a slipped disc or something like that because my older brother has had problems with his back before. Those expectations quickly dissipated as it was apparent it wasn’t that. I left that appointment starting to wonder what it could be. Next was an appointment at my local hospital at the Bone & Fracture clinic; again, no answers, only more questions, so this was followed up by an appointment with a neurologist who ordered an MRI and a short synacthen test. At this point it was obvious something was up but I tried not to dwell on it. I still vividly remember catching the train to the MRI appointment and using a trekking pole to help me retain some stability; it must’ve been a twenty minute walk from the station to the hospital, although it felt way longer because when each step could potentially be a pitfall any length of time feels dangerous and stressful. 

I found out I had AMN through receiving a clinic letter in the post sometime in July… not an in-person appointment or anything personal like that, just a letter confirming the diagnosis (based on the findings of the short synacthen test / MRI) and a leaflet for Alex TLC (which at the time was called ALD Life) so that I could find out more information. I remember reading it through several times just so it would sink in but by that time I was in such a state of shock that I really didn’t know which way was up anymore, or what I was going to do, or how I was going to share this with my loved ones. Looking back on it now, it was an especially devastating thing to find out in a period of your life where you’re trying to put the puzzle pieces together.

The next few years post-diagnosis were difficult to navigate. I don’t have brain involvement currently, so the areas to target with therapy were my back/legs/feet and bladder. I ended up trying a few different things to help; for a few years I was receiving Functional Electrical Stimulation (FES) on my legs to help with the foot drop but it didn’t make enough of a difference to continue having yearly check-up appointments. Instead, I try to work out my legs as much as I can and use a combination of crutches / a rollator to get about inside the house. Outside of the house I use a wheelchair to get around as it takes the anxiety and risk of injury completely out of the equation and gives me the confidence to go further afield. I get foot spasms in the evening when laying in bed so I take 300mg of Gabapentin a night to remedy that. For bladder urgency I take a 50mg Mirabegron tablet each morning which helps alongside monitoring the things I drink and eat to make sure they’re not too spicy or acidic. I did have a Botox injection once to help with the overactive bladder but it was an experience I’m in no hurry to repeat. In 2021 I fell over and broke several bones in my foot which although it was a setback was also a learning opportunity to be more careful. I continue to have yearly brain MRI’s and short synacthen tests to monitor things. In terms of where I live, we had some alterations done to the house to make it more accessible (downstairs wet-room, level access, etc.) thanks to a Disabled Facilities Grant from my local council.

As I write this now in 2024, life is really rather wonderful. I’m grateful that I was young when I received the news because it’s allowed me reinvent myself and adapt pretty well to obstacles that AMN likes to throw up from time to time (it can be really frustrating, but I have to remind myself to have empathy for what my body is going through). Six years on from diagnosis, so much has happened on a personal level that it feels almost like a lifetime of memories that have been compressed into something much smaller. There really is no rulebook to pull from when dealing with something like this. I wish I knew back then the strain it would place upon others, the plans it would uproot and the toll it would take on my mental health.

It’s a journey, a process, and one I’m so thankful to have not been alone on. Though the relationship I was in at the time has now rescinded, I’m indebted for all that it taught me. The bad times were like going through fire but it made me a better and stronger person — and we successfully transitioned into a fruitful, cordial co-parenting arrangement too. To all the support from my parents (without whom I would be nowhere), my two brothers (who never cease to inspire me), my son (who will forever be my best achievement in life and who I love immensely) – to all of my extended family and friends who have helped / continue to help. Spiritually, I’ve felt the guiding hand of each of my grandparents on my shoulder at various times too; their teachings remain and are something I will always champion. I choose not to compromise my morals and standards because underneath the AMN, I’m the same person I’ve always been – and always will be, too.

I really truly love my life now. It’s been a strange experience to say the least (one I often compare to crash-landing in the ocean, washing ashore on a deserted island and learning to survive from scratch) but one I wouldn’t change. Life is more fragile than we realise and we don’t know what the tide will bring in, but that’s totally okay. It’s so important to cherish the small moments. Be present. Be thankful. Continue creating new traditions and learning a new normal… it remains an adventure — but man, I am all for it.

I am so, so grateful to live in a universe where Alex TLC exists. Their knowledge and support throughout has been invaluable. They really provide so much to the entire leukodystrophy community at this point with the breadth of their connections and the resources they’re able to provide. I particularly enjoy reading through their research summary emails as it helps retain a sense of hope through being reminded medical research is ongoing, the online workshops they provide, the annual Community Weekend events and more. The sense of community and belonging is really very strong and it’s a wonderful feeling to know you’re not alone in dealing with the hardships a long-term illness can place on the patient as well as those around them.  

“Lost Now Found”

The following is something I wrote maybe seven or eight years ago over the course of a couple of evenings. I haven’t edited it before publishing it here, so it is completely untouched and is very much a product of its time. Despite this, I’m proud of what I did with it. It describes the journey of a kid who leaves his home in the middle of the night to go on a bit of an adventure. It’s not so much meant to be taken literally; it is more of an emotional adventure, into the depths of sorrow and making it out the other side. It seems that even back then I was writing about emotive matters. Enjoy!

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Old Ghosts

It's getting late. There's a downpour outside and it's only getting heavier as time goes on. It's going to be another sleepless night. I have my bedroom curtains drawn right back so that I can see all that is going on with heavy eyes as I lay back on my bed, deep in thought; the constant beating of rain against the windowpane a harsh reminder I'm still awake.

I've made many messes and have so many regrets… too many to count now; so many that I wish I could travel back in time and fix before… well, you know how it goes. My arms are scarred from every bad experience and they never seem to heal properly either. I've become numb to the world around me. I feel like I'm constantly shrouded in darkness nowadays… every night home to a new nightmare that feels everlasting; lost inside my own head, shipwrecked at sea, surrounded by the submerged ruins of a once-pristine society with nothing to hold onto to keep my head above the level. It's kind of funny, really. It's ALWAYS when you're finally convinced yourself that you've beaten your demons that those fleeting bad memories and ghosts find a way of coming back and getting you when you're least expecting it; my many failures, messy ends and missed opportunities.

The rain is still pouring outside and it's so noisy now - but ironically enough, that's when it suddenly strikes me, and clicks in a way that it hasn't before: the past REALLY is in the past. I can't change it no matter how hard I try. Yesterday is dead already and all the heartache associated with it ceases to matter now… today. 'Til the day I die, I swear I will wear these scars life gave me as a badge of honour; of perseverance; as an everlasting reminder that I made it through those nights I had convinced myself I wouldn't. I feel so tired…

I open my eyes. The rain has stopped. The windowsill is damp, as is the wall around the pane, but it's still night. I feel different… like something has fallen by the wayside finally. Maybe all the hurt I've been harbouring for all this time has finally decided to leave me be. I check my phone and it's 3:02am. I tiptoe my way out of bed and stand by the window, staring out into the night sky and beyond. Maybe things are changing now after all…

Togetherness

Never underestimate the strength of our connection with the natural world; the power and influence it can have on us as mere bystanders, in comparison to its grandeur, if we take the time to sit down and bask in all its glory.

I'm closing the house door now, and locking it, at around 8am. I'm wearing my favourite boots for I know that today, I'm going to go out and have some fun for a change! The almost-cliché abundance of gross leaves that accompanies Autumns arrival line every dirt track, road and pavement that I can see around me. I slip and slide underfoot, but I chuckle to myself, for the unexpected movement caused by my weary trainers are making things way more fun than they otherwise would have been.

I've been SO blessed with all of the good that's happened in my life up to this point. I must always remember and cherish that feeling of complete and utter contentment whenever it appears, for I know that feeling cannot and will not last. The good and the bad… if we never experienced loss or bad things, we'd never appreciate the good. We are only human, after all - and we require that gentle nudge every once in a while so that we're able to recalibrate our efforts and make lifestyle choices where necessary. Life, in its simplest form, is a fight for survival; those who thrive live a balanced life.

I'm skipping between the trees now, covering considerable distance in the process. The sun hasn't yet broken through the clouds, colouring everything cold and damp, yet I'm happy because I'm outside the house. Locking myself away for hours upon end in my bedroom is something, I learnt, that never really helps matters because it simply isn't healthy for your mental state to isolate yourself away from people and things that actually DO matter. It's tempting, sometimes - sure - but it sends you down a path that can often be very difficult to break from. A life spent alone is a sad, daunting prospect, and I think it's invaluable to remind yourself of that particular outcome when you start isolating yourself away from the people that love you.

I think that's the trick to life. On a line chart, our happiness can be represented by a series of peaks and troughs and can be interpreted in an almost binary fashion. Life is what you make of it ultimately, but it's always worth reminding yourself to keep fighting the good fight; whatever that might be. You are alive, and that's a beautiful gift, not a right or a burden. Instead of fixating on all of the bad, or the ways in which a situation can blow up, it's good just to take a deep breath and remind yourself on what you already have; not what's next.

Take a deep breath. Blink. It's amazing, all the good that you can see, if you only take the time to.

When We're Called To Go, We Must

The black, cold iron gate sends shivers down by spine as I open, and then close it, behind me. It's probably around half-past nine now, after frolicking through the forest. I had to climb a steady incline to reach this place, tucked away on the outskirts of town; against the rocky outcrop that borders my town with another. It's very uncommon to see anybody here due to its remoteness, and today is no exception…

I come here to remember the people who aren't alive anymore. I can count the names of the people that've gone on two hands in an awkwardly trivial fashion, yet the pain I feel when I remember the past is as strong as it's ever been. I come here to feel - and it hurts… it hurts a LOT to think back and to mull over what could've been, and the ways things should've gone. It's one thing for people to check in and out of your life over the course of it, but for someone to check out of this world altogether… that's a whole other thing. There's nothing you can do or say or think or act out to change events when that happens. Everything that once could've been… lost forever. It's strange, almost numbing, the way that feeling of loss can follow you around and turn everything you once loved doing to stone.

A dead Oak continues its residence in the middle of this overly-small cemetery. It's a huge tree, but has been clearly decaying for a couple of years now, and has dropped dead branches straight down onto a couple of tombstones below. I bring nothing but my thoughts and prayers to this 'yard, too scared to buy anything nice for my relatives' graves in case it's broken or possibly even stolen. My head hurts… I've been thinking way too much about the ins-and-outs of life, and our unstoppable onward march toward death. It begins to rain, and without a moment's notice I run toward some shelter in the form of what looks to be a cavern.

I trip over right in front of it, crashing through a line of support planks painted with hazard colours - and quickly realise that it leads only one way… down. I tumble down the steep incline with alarming briskness - and then, suddenly… I stop.

Down

It takes a few seconds for the dust to settle before I realise I'm underground, in what looks to be the town's old dis-used mining facility (if you can believe it!). It must have been left deserted for around twenty years now… and you can definitely tell, from all the scattered lanterns placed on rotting old oil barrels and the way that the wind is howling through this narrow cavern… a place lost to time indeed. I think I remember seeing somewhere in the town magazine that people occasionally gather here for archaeological purposes every once in a while…

I pick myself up off the floor and quickly realise there's no way I can walk back up where I fell from. I walk toward what I believe to be light emanating from a crack in the rock a few metres in front of me. I reach it, and it is golden light seeping in… but it's coming from a caved-in entrance into a different part of the mine. My hopes dashed, I try pushing the rocks away, attempting to clear a way through… but I'm not strong enough. I sink to the floor once more and think about everything and cry.

I miss my family. I miss all the people that I've pushed away because I was too lazy to help myself get better again. If I died down here, would they miss me? I saw that happen on a video game I played once… Firewatch, I think it was? A boy fell down into a cave, couldn't get back out and ended up dying down there… yeah, probably best not to think about that given my current situation. The Dad was left devastated… is that going to happen here? Or what if it starts raining, and the mine fills up with water and I drown?  Okay, now it REALLY is time to stop…

I'm stood at a junction that splits off into half a dozen different directions. I hear the faintest single footsteps behind me, and I quickly turn around onto to see a silhouette - off into the distance - looking at me from behind a rocky outcrop before sliding away out of view. Alarmed that I am now not alone down here, I pick a direction and run. I pass all sorts of different, interesting objects on my brisk journey to freedom, but I'm too scared to look back in case of what I see staring back at me. I feel like I'm going around in circles, somewhat.

I feel cool air blowing back in my face and through my hair, so I continue running and sprinting until suddenly, I'm outside again. This time I'm stood atop the rocky out-cove I fell into… I feel like a God, looking down on the entire town.

I Will Meet You There

The sun has made its debut appearance, and everything is glistening as if by starlight. I feel like a different person now… even though I was in the darkness for roughly half an hour, I made it through it alone and feel braver than I ever have done before. But it's not the same for everybody… some have no choice but to go through life alone, but to those that do have one: reach out to your loved ones and tell them that you need their help and love.

I've made that mistake a fair few times now… but I'm trying to be better. This isn't the first time I've been on this journey of trying to heal from the past, but it could've been if I had sought proper help after the first time it happened. I was stupid, I was wrong, I didn't want to accept that I needed help… but now I do. I think that's normal, and it typically takes me way longer to realise things than most people, but that's okay for every person is different.

I'm still not sure why I get unhappy in the first place. It comes and goes like the evening tide. I wish I didn't suffer with it… but then again, if I didn't, I don't think that I would appreciate all the good in my life as much. I guess what I'm trying to say is: it's okay to not be okay, sometimes. If it's near-constant or worse, then it's absolutely imperative that you seek help. The time has finally come that I move forward and take back control of my life.

It's time I get back home… I wonder if anyone missed me?