19th May 2005.
Fifteen years ago.
Half of my thirty year life ago.
5,491 days out of the 11,276 I have somehow managed to get through ago.
I was diagnosed with Multiple Sclerosis (MS) that day.
I was fifteen years old.
The other day I tried to write a little something about it but, as is the case for many of my aims these days, I couldn’t manage to complete it. I’m trying again today as I hope a handful of you may be interested.
I’m trying again today as today is World MS Day.
That day arrived during the middle of my Standard Grade exams. It had hung over me for what felt like forever, like a mysterious black rain cloud, floating there. One of those ones where it’s either going to break up to reveal the glorious sunshine behind it or decide to forcefully relieve itself the moment you try to sneak out beneath it without a coat. I had no knowledge to be able to predict what was to come.
I had spent weeks off school before that day. Weeks not being able to see properly. All things hazy and everything double. Staggering around like I had had one-too-many underage drinks. Lying in bed, watching the 2005 World Snooker Championships while my friends were out playing. I never knew there were so many balls on a snooker table…
That day fell just six days from the end. My first ever exams almost negotiated. You probably know the feeling yourself. Unpleasant doesn’t really cut it. A stressful and daunting time for any young person.
Those anxious feelings you feel during times like those were bombarding me ten-fold. Those emotions that had spun around my head for months and months leading up to that day battered me. And exams were only responsible for a minuscule fraction of that stress, dread, worry, fear and anguish that rumbled inside me. I had too much on my proverbial plate. I was fighting to deal with it.
Don’t get me wrong, I worried about the exams. I worried about them just like anyone does when they know that intimidating paper is going to be slapped down infront of them and that large, white, analogue clock at the front of the hall is going to tick and tick and tick again. The one that pulses through your chest and thuds against your heavily graffitied desk. The one the vibrates through your pen as you try to keep it gripped to your perspiring hands. Another second less. Get yourself together. Test begun. You don’t have time to waste. No more time for worry.
But the tests I had faced had been around for months. Long before exams. Strange scans. Bloods taken. Eyesight tests. Walking and balance assessments. Knees and other joints hit with that strange rubber hammer.
Can you touch your nose?
Can you walk up and down?
Can you feel this?
Can you feel that?
Can you follow my finger as I spin it around the room?
Which one of the two should I follow, I wanted to ask…
Scans completed. Examinations ongoing and further assessments to come. Brave face securely pasted on.
I was flapping around scrambling to put words to the questions that didn’t make any sense. Why didn’t I feel the same as everyone else? I’ve obviously stepped into the wrong exam. I didn’t study this. I can’t make sense of this. Tick. Tock.
I had sat an exam that day. Another hurdle negotiated. Nearly there.
After my exam I found myself sandwiched in at the hospital for yet another urgent appointment. It had been a whole ten days on from escaping the previous one but, despite the busyness and the angst, it felt like an hour. After nearly a month of being bombarded by questions on a page and even longer from the blood-thirsty media in my head I ached to know the answers. I read the sensationalist headlines and scavenged beneath for the facts. I tried desperately to filter out some of the frenzy.
What was going on? What were all these strange feeling I kept having? The ones since my early teens. The ones from even earlier than that. The numbness. The double vision. The vertigo. Why was I so tired? Why couldn’t I complete a full day at school? Why couldn’t I kick a ball with my mates? Had I really had a stroke the other week? The assembled circus in my head suggested answers. My skull ached with the strain. I hurt with worries.
I hoped someone could give me the answers. Someone who knew what they were talking about. I closed my eyes in the waiting room as my name was called. I peeled my sweaty legs from the blue plastic and made my way towards the voice, practicing the best normal walk I could muster. I sat down stiffly and the clock began ticking. Ten minutes for this one, if I’m lucky, I thought.
A locum neurologist broke the news to me that day. Showed me pictures of my brain. Pointed to the areas of ‘damage’. Told me about the scans I had had. Made some comparisons. Did some more prodding and some more poking. Probably to pad out it out a bit. Add an extra sprinkle of tension to the whole situation.
I got an answer that day. Another one ticked off from the month. Another mark in the bag.
But I had to doing the working out. I had to try and form the solutions and the explanations. I created new questions. But ultimately, and finally, the findings were revealed.
The neurologist released the words “You have Multiple Sclerosis” that day.
Medical terminology proceeded to spill from her mouth, crashing hard against my weary remains. Out the corner of my eye I stared at the pictures on the plastic film on the projector. Her words fell quieter; increasingly drowned out by a cacophony of thoughts in my head. In my brain.
My damaged brain. The one that stared back at me haunting me from the flimsy plastic laid clumsy across the lamp source.
Bits being pointed at with a pen.
In my own head.
I squinted again.
Is that really mine?
My abnormal brain.
That’s not normal, is it?
What’s that all about, Doctor?
The thick, heavy concrete had been poured into the base of the life-long relationship of me and that brave face, securing it firmly in permanent position.
I was tired that day. I had been for weeks. Actually, tired is a bit weak if truth be told; I had been consumed by it for weeks. I had wondered what had been going on for months. Years, perhaps.
I had missed school. I had lost my eyesight. I had cancelled plans. I had lost feeling in my body. I had struggled to sleep. I had drifted apart from friends. I had hardly revised. I didn’t want to eat. I purposely hurt myself. Punished myself. I’ll pause.
Life continued and I clung on. I couldn’t pause. No option for that.
I clung on.
I clung on by every last millimetre of my ever-shortening fingernails.
But at least I had an answer.
Finally, an explanation.
Everything will be ok. It’ll be better in a few weeks. Finally got a solution.
I’ll be back to normal soon.
Won’t it, Doctor?
The brave face twitched. It slyly shuddered with dread.
“You have Multiple Sclerosis.”
Didn’t mean anything to me.
I couldn’t even repeat it, never mind spell it. I’d write it down if I knew where to start.
The rest of the appointment went by in a blur. I left the room tired. I left the department with questions. I had no idea the weight of the news that had just been placed in my backpack with the tag : “Do not remove”. “Must carry at all times”.
“Do not remove for the rest of your life.”
I staggered silently through the wet car park with my dad that day. In that month of being peppered with questions some more fluttered around my head all fighting for my undivided attention. Why wasn’t I staying in hospital to get some drugs to get me better or something to that effect was one of the thousand or so. I sat and stared out the passenger seat window, my exhausted head cushioned by the glass.
My life was crumbling before it had started and I didn’t even know the half of it. Not even a quarter of it.
I’ll get some medicine and get over it and get back to normal. Maybe a bit of time in hospital but at least now I know what it is, now I can get better…
I had no idea.
I plodded into the house followed by my dad. We hadn’t said a word. I was too exhausted. Too uptight. Too worried about tomorrow’s exam. Too concerned with my performance in today’s. Too curious as to what this was all about. I guess he must be tired too or something. Not a word.
The silence was swiftly broken.
Hysterical is how I would describe it. I can’t even put it into any more words to this day. My dad was slumped in the wave of emotion that had overcome him. I was in his arms. He was in mine. I was holding him. Clutching him.
What the hell is going on?
I joined some dots that day.
I found out that day that my auntie also has Multiple Sclerosis. His sister. I knew for years that she wasn’t well but at my age I wouldn’t know what MS was. I mean – MS must be for older people, right? I’m a boy.
My chair wailed as I threw my backside down as I began flicking through the papers on my desk, shutting my door. Wasting time. Distracting.
I wouldn’t just take some time off and get myself cured for next term.
I wasn’t some sportsperson curtailing the end of their season for a routine procedure in order to be recovered and refreshed in time for pre-season.
I wouldn’t just “get some drugs and be alright”.
Fifteen years old.
Through my own eyes, just a boy. Compared to all this, just a little kid.
I listened to music during the night on that day. It remains my go-to attempt at escape – even more so now if truth be told. That evening I, rather ironically, elected for ‘The Earth is Not a Cold Dead Place’ by one of my favourite bands ‘Explosions in the Sky’. The droning, heavy sounds punched and rattled my headphones until the early hours. It was a deeply memorable experience – and something I love about some music – that it can take you places – even if just for fourty minutes or so. Fourty minutes or four minutes – either would do for me that night, and most nights for as far back as I can recall. I will always remember that particular listen. An cauldron of boiling emotions raged beneath the frequencies crashing into my eardrums.
As the final few notes trickled away and I rejoined earth I tried to resist flipping the home laptop open, firing up the first search engine and typing in “fucking hell what is going on” “MS” “What the heck is MS” and “how many fingers on one hand represent the number of hours until my next exam starts”. And some other combinations.
I lay down, the laptop pulsed on my pounding chest as I clicked through the pages and pages of results, the white light burning through my eyeballs as I squinted to see the letters. I opened the first ten search results. Read slowly, tab by tab. Read with sadness. Read with fear.
” W H A T I S M S ? “
“MS is an autoimmune condition. This is when something goes wrong with the immune system. The immune symptom mistakenly attacks a healthy part of the body – in this case, the brain or spinal cord of the nervous system.”
“The average age which at which people develop MS is 30 years old. About 70 per cent of people with MS develop the disease between the ages of 20 and 40 years. It’s about two to three times more common in women than men.”
“It is estimated that for all MS patients the chance of walking unaided in 15 years following disease onset is 50%. 1/2 of the patients will need assistance in walking or will be wheelchair bound; another 1/2 of the patients will be able to ambulate unaided.”
“Frequency of death by suicide was found to be 7.5 times higher among patients with MS compared to the general population. It was found that in suicidal patients, suicide rate did not correlate with disability.”
“The average longevity in the population of patients with MS is very difficult to estimate because it varies widely from patient to patient. Average life span of 25 to 35 years after the diagnosis of MS is made are often stated. Some of the most common causes of death in MS patients are secondary complications resulting from immobility, chronic urinary tract infections, compromised swallowing and breathing. Some of the complications in this category are chronic bed sores, urogenital sepsis, and aspiration or bacterial pneumonia.”
I hadn’t even lived.
I hadn’t even got a job. I hadn’t even completed school. I hadn’t even completed my exams. And on it went.
I hadn’t done anything. I hadn’t achieved anything. I hadn’t had a life.
And I wept a bit more.
And another deluge came.
The bright light of morning pierced through my curtains as I lay exhausted in my own salty outpouring. My face was full. My eyes felt raw and for some reason, I remember my teeth felt tight like I’d eaten too much sugar. My ‘fleshy’ figure knew that taste well a little too well. But no sugar had crossed my lips this time. Salt, however, I couldn’t deny. Before I knew it I was on my way to school again for the next inquisition. Five days from the end.
My head felt heavy. My body weary. I longed to let the tears flow again but I fought them back. To be honest, I think I had used up my seasonal reservoir anyway.
I’ve cried less than a handful of times since that day. I wish I knew why. I wish I knew why as almost every day for the past few years has been full of the most immense physical and emotional distress. Buried inside. Locked away.
It was the end of my childhood that day. The end of what had been a difficult childhood for many reasons. I became an adult overnight. A grown up. I had to work out how the hell I was going to navigate this.
I continued on to school. Nearly done. Just some more questions to think about. Just some more answers to find.
My mind was unforgiving. My thoughts were bleak. The exam hugely important but, in the grand scheme of things, did it really matter? What was the point anyway?
Creating my own exam in my head. For twelve marks. And a couple of extension marks.
Can someone answer? Can someone else sit this one for me?
Nearly at school.
You’ve got five minutes. All the best.
Could I finish my exams? Will I be able to see? Could I go to University? Will I be able to work? Can I complete the rest of school? Will I still be able to play football? Can people notice? Will I be able to talk? Will I be able to run? Will I be able to have kids? Will I be able to walk? Will I be able to eat?
Will I survive?
Will I have the strength to live?
Time up. Papers collected. You’ll find out one day.
My head was spinning. My exhausted brain felt like it was going to explode out of my skull. That damaged brain.
I was run down. I was worried. Confused. Questions swamped my head. I felt so scared.
The load on my skinny shoulders was colossal. That mysterious black cloud wept and wept.
And darkness fell again.
Despite missing much of another school term with crippling side-effects from the medications I was prescribed to try and control my condition I completed my final years at school, with great aid from some outstanding teachers whom I am extremely grateful to. Disease Modifying Treatments (DMTs) – the medications were swankily titled – were to be administered by self-injecting – initially with intramuscular injections once a week, increasing to every second day was my life. Within hours of squeezing that toxic substance into my thigh the most rapidly evolving flu-like symptoms would knock me out. Chills. Sweats. Headaches. Top off. Top(s) on. Thirsty. Aching. Awake. Out-cold. I would miss most of or often all of the next day at school. And then it was injection day again. And then ‘feel shit’ day. And so on. I was utterly wiped out.
My attendance at school was sporadic, my social life non-existent. “Wanna play footy later, Stu?” “Nah I’m
doing my injection washing my hair, sorry. Maybe another time,” I grimaced. Understandably, I stopped being asked places. I couldn’t tell people what was going on. I couldn’t talk. Gotta make out all is well. Pretty difficult after a night on these newly prescribed drugs that had taken permanent residence throughout the bottom shelf of my fridge.
Weeks and weeks into the medication and there was no improvement. I was feeling worse. The medications, in short, designed to suppress my immune system in order to hope that it won’t attack itself, did little to live up to their billing. I was still relapsing. Another relapse despite being on these drugs. Aren’t they meant to stop all this? Numbness down the whole left side of my body. Face to toes. Off school again.
October 2005, months after beginning on treatment, I’d be spending hours in the hospital over several consecutive days receiving intravenous steroids to try and calm the exacerbation. Sweat pouring off me. Eating everything in sight. Eyes like saucers. Impossible to sleep. That plump, round ‘steroid face’. That would have been a difficult one to hide from my classmates and the teachers and the man in the street.
I was miserable. I was losing everything. I couldn’t function. I could not carry on like this. There was no point in me trying to continue with life.
The injections were becoming increasingly challenging. I’d usually do them early in the evening so that I have no major commitments before the inevitable wipeout crashed through me. I’d sit there sometimes for minutes. And some more minutes. Counting down. Listening to music. Just stab it in and squeeze. Simple as that…
I’d even try to get help from my best friend. I’d have him come over and hold the needle and conduct a mutual countdown until, at the last second, I’d bottle it and dart across the room. It didn’t work but I’ll always be grateful for his support and his time. So I’d try a different way – I’d change plan and try and do it before I needed to go somewhere. To force myself into doing it. If you don’t do it now you’re going to be late kind of message to the knackered brain.
I couldn’t take the lethargy. The most overwhelming side effects that would appear within minutes. I can’t keep this up. I can’t miss more life. I need to get my grades. But I can’t admit that this is too hard for me. I need to get over this. I need to feel I still have some strength left. I didn’t. But I made out I did.
I’d nick the skin. Make it bleed. And it spray the syringe – that valuable, expensive medicine down the toilet. Done my injection, look, pointing to the claret dripping downwards towards my kneecap. It was only meant to be once. I can’t do it tonight but I’ll do it next time. I’ll be braver then. Next time, I’ll make sure. I’m ashamed. But it won’t happen again.
It happened for weeks.
I felt so guilty. So distressed. And the longer it went on the harder it became to admit it. I couldn’t even do something that simple. Just stab and squeeze. What a failure. But they’re not helping anyway – a feeble case for defence to the ruthless jury in my head.
After those few weeks I admitted to my nurse what I had done. My eyes analysing every last fibre of my shoelaces as my head slumped towards the ground and I felt the shame I deserved. The value was read out to me – of how much the medication costs. Surprisingly, that didn’t help matters but I deserved to hear it. An absolute stupid failure. Those words, my own, by the way.
In the last fifteen years there have been outstanding advancements in the treatments available for MS. Whilst there is still currently no cure, the medication options are increasingly developing in various forms including, for example, oral medication which has been an option for certain qualifying MS patients in Scotland since around 2013 if I remember correctly. But, at that time, it was injection A, B and, possibly, injection C, I think.
So, against the advice of my MS nurse, and my neurologist, I went ‘cold turkey’ in 2007. I stopped the injections but, this time, stopped them officially.
Through the fatigue, the strange ongoing numbness, and the shuddering reminders through my messed-up eyesight I did all I could to finish school and catch up on all I had missed. I tried all I could. My final year. My last chance. The final shot at leaving school with some Higher qualifications after, pretty much, blanket failure from the previous year.
I felt the pressure in my choice. Another load in the bag. Another hidden pocket to shove a bit more torment in. Go on, top it up a bit.
My choice. Against medical advice. “You have ‘Highly Active Relapsing/Remitting MS’. You are putting yourself in danger, Stuart”. Easy for them to say. Against the advice of my family. Easy for them to say, too.
I knew how unliveable life on the medication was. And I had lost faith in its abilities to protect me. But it was also one that if I calculated wrong, and I was hit with permanent disability, I would never, ever forgive myself. After weighing it all up it was a gamble I felt I had to take. I came off all Disease Modifying Treatments.
And guess what, a couple of years later, in 2009 I was smashed with a cruel reminder. I should have seen it coming really. Especially as I could see twice as much as a ‘normal’ person. Again. Again.
This time my symptoms were aggressive. Complete numbness down my life side. Double vision. Poor balance. Pain. For weeks. With no inclination of going away. Some significant cognitive dysfunction fancied some space on the stage, too. Was this it? I guess this was always going to happen. The inner critic, that always pestered me, couldn’t be silenced. It would not be talked down. This is your own fault. You absolute [*insert several expletives here*] idiot.
Thankfully, for me, a lengthy course of oral steroids gradually cleared things up and I was able to put down all the food, close all the windows and reintroduce clothing back onto my sweaty, steroid-kissed skin. The steroid weight gain and the horrible body temperature change were the least of my worries. I knew with each passing relapse irreparable damage was being done. But thankfully, for now I was, mostly, managing to sneak out from the jaws of permanence. Somehow my body had more durability than I thought. Thankfully I recovered. Finally some good fortune. I felt extremely lucky.
I discussed the latest options with regards to treatment. I knew I had to get back onto something. I hoped that something other than the injections was now available. Fortunately, there was.
A ‘new’ medication had just come back on the UK market called Natalizumab (brand name, ‘Tysabri’) – a four weekly intravenous infusion, administered over an hour in an outpatient hospital setting. I was told I would be one of the first patients in the Scottish Highland’s to be on it should I make that decision. “Where do I sign?“, I thought.
I read though the information. As per advice, I researched a bit more online.
“Natalizumab is associated with a risk of PML— a rare, progressive, and demyelinating disease of the central nervous system that can be fatal. It is caused by activation of John Cunningham virus (JCV), which usually remains latent and typically only causes PML in immunocompromised patients.”
Another stressful life decision and another dose of uncertainty. But I went for it. Little did I know ten years down the line I’ll probably never be able to come off it but that is one to worry about another day. I had a medication that ticked some boxes for me and, with the disabling relapse, I could not afford to waste anymore time without feeling some sort of protection. After a couple of scans and couple of assessments to check my validity, I began the infusions in March 2010 and continue to this day. I continue to this day with no new or active lesions since I began.
I gradually began to settle. In fact, for a few months I managed to find a way to loosen the load of that backpack. Untighten the straps. Ease the weight. Release the burden.
From 2011, sparked by some force of inspiration, I embarked on a journey that I initially felt was the best thing I had ever done. A combination of my new treatment, the end of a relationship, the recent debilitating relapse, the negative stories I had read kicked my backside into the highest of gears. The realisation that my time was finite was at the forefront. I didn’t know how long I had. How long my body would hold up for. The unpredictability of MS is hugely challenging to live with. It’s difficult to explain to someone in different shoes. You don’t know what is coming and when it will strike. You feel you need to try and stay ahead of it at all times. To run from it.
That’s what I did. I ran from it. After despising running throughout school I decided I was going to run a marathon for charity. Fucking hell, Stu, calm down. You’ve barely ever run the length of yourself. A valid point from the ol’ brain, to be fair. The opinions of others on the goals I had set differed vastly, too.
I bought my first pair of running shoes and pounded the streets for months. It was an escape. Leave everything at home. Just me and the tarmac. Me and the forest. Time to breathe. To get my head a bit more level from the stresses of the day. But never did I expect anything like the rush it gave me.
Confidence in my body soared. My goals became higher. The money on my fund-raising page crept up as the encouraging messages increased. I feared looking back. Feared what might be next. But still I fought to stay in the forward gear.
I believed in myself when others could not see through the challenges. I had an identity. Finally, a purpose was found for me. I was, apparently, an “inspiration”.
I ran a full marathon. I ran several half-marathons. I raised over £50,000 in total for charity. I saved a life. I helped many more.
I raised awareness of MS. I ‘spoke’ via social media to a worldwide audience. People asked me for help. I featured in newspapers, in magazines and online publishings. I was honoured with awards. People praised me for what I was doing. It felt uncomfortable, but so precious.
Life was still far from easy. The daily challenges remained but I had found an escape. Finally, something to release the pressure cooker in my head. Finally, some of those lingering questions were answered. Fear was slowly dissipating. The goals got bigger, my voice got louder.
I thought I was invincible. I felt I had overcome it. 1-0 to me.
The backpack had been slipped onto one shoulder. Loosened the straps that had trenched into my flesh for years. The relief was immense. I didn’t think I was able.
My life became consumed by it as I fought to push all of my many other problems aside. Made out they weren’t there. Tried to leave them elsewhere. I went on and on and on to keep up this new found identity. And I ran and I ran. I couldn’t afford to be caught again.
I fantasised about ultra-marathons. I dreamt about triathlons. I even thought about looking into qualification for Paralympic sport.
And it ended.
In 2013, everything changed.
MS remained stable, but life changed. No new activity in my brain or spinal cord but my health plummeted. I ran out of that tiny bit of luck I got in my life. Never to be seen again. I felt punished.
I couldn’t run from it anymore and it crept up on me with each passing second. A sudden invasion. I didn’t see it coming.
An overwhelming, tortuous pain. An extraordinary challenge to make it to the end of every single day. Total physical and mental exhaustion.
And it continues with each passing day. Life is unforgiving. Daily feelings of absolute despair. 2-1 to it. In stoppage time.
I tried, and try even harder, to keep going. Try to keep doing what I can and when I can. But it feels futile.
That backpack was heavy. It pulled me down. It was heavy for years. Maybe subconsciously it still is. It must be. Maybe I still don’t want to accept it. Maybe I still, fifteen years on, block it out. My default – block it out. Distract. Try and avoid. Short term gain, long term pain I’ve realised. I wish I still didn’t react to stress as I did back then.
I didn’t think anything would ever come close to how I felt on that day. I thought nothing would match the pain from that day. I thought nothing would match the weight squeezed into that backpack that day.
I was wrong.
I was so, incredibly wrong.
My wells of resilience split and crack. They groan with thirst.
Just how much can I continue to muster?
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Thanks, and take good care of yourself x