Wembley Woes

Ambushed by a wheelchair

When will I learn?

I’ve had a long time to get used to having MS – 22 years since the first symptoms – but I still overestimate my ability to walk for any distance. Maybe it’s because the weakness in my legs has had a creeping malevolence, making the reduction in the ground I can cover easy to ignore sometimes. Simpler to imagine a world where I have MS but can do the things I could do for the first 10 years post-diagnosis, like play football.

Speaking of which – and this may be a larger part of the reason for this particular episode – I was heading to watch my team, Leeds United, in the Championship Play-off Final at Wembley. The excitement, the scramble for tickets, the logistics of getting there were all effective distractions from my Dark Passenger.

So we were on our way. My son, E and I, and two of my good friends, on the M1 at a time when I would normally still be in bed on a Sunday morning. And I was driving. Mistake No.1, probably, though cruise control is a godsend to anyone with weak legs. Shame the speed was set to 50 for so much of it, as we waded through mile upon mile of roadworks.

We got parked in a disabled spot, right outside Harrow-on-the-Hill station, as planned. After a pint and a burger, the tube took us to Wembley Park in no time. By pure chance, we bumped into another couple of friends at the exit barrier. Fans were in full voice, the arch of Wembley suddenly dominated the skyline and everything for a moment felt right with the world.

Then it all began to go wrong.

We lost the two new members of our party in as quick a time as it took to find them. After scanning the crowd for a while without success, we ploughed on up Wembley Way till I began to feel tired and had to rest. The friends that had travelled with me were sitting in a different area of the ground, so we decided to part company at this point. Yeah, enjoy your corner view boys, I thought. It seemed like I’d secured E and I great tickets in comparison. But there was something I’d stupidly overlooked: unlike their corner tickets, our position on the halfway line entailed the very furthest walk around the stadium that was possible.

I made it nearly to the end of Wembley Way, but then we were diverted towards the blue zone, which entailed a walk of several 100 metres. I had my stick, but soon that wasn’t enough. E’s shoulder came into play on my other side, then another rest on the pavement. Another walk for five minutes, then another rest.

That I wasn’t going to make it began to be a real possibility. But there was still 45 minutes till kick off. I’d come this far. I’d crawl on my hands and knees if need be. My right foot began to drag. Without E’s support, a face plant was not out of the question. I stumbled on, very slowly, moving like a Thunderbird with a couple of strings cut.

 

And then we’d made it. Or so we thought. There was a gangway where we had to show our ticket, but this only took you to some steps up to the massive concrete concourse outside the stadium. I’m fast forwarding through the story though. First, I had to make it up around 20 steps just to get to that concourse. I may as well have been climbing the 107 steps the players have to climb in Wembley to be presented with a trophy.

I’d deserve a winners’ medal if I made it to the top. I clutched the handrail in my left hand while trying to persuade my right leg to make it up to the next step. The only way I could do this was by grabbing my jeans and physically pulling my leg up. I’d lost all feeling and strength in that limb. E looked round at me in disbelief. He’s never seen me this bad. No surprise there as I’d never seen myself this bad either.

By the time I’d made it to the top I was a mess. Ever seen those two female marathon runners at the end of the race where they’re trying desperately to make it over the line? That was me, and it looked like there was at least another 200 metres to go.

It was at that point that I made the decision: this would require the intervention of wheels. I sent E to talk to a WPC about getting transport for me. On speaking to the WPC, she duly went to find a steward while I sat down on the cold concrete.

The steward couldn’t have been nicer and, in another ten minutes, I found myself sitting for the very first time in a wheelchair. It felt like this particular chair had been waiting to pounce on me for a while, but I still wasn’t ready. I thought it was still a good few years off, yet here I was about to be ironsided into England’s national stadium.

However, prior to that, I experienced something else I was ill prepared for, but which most wheelchair users are probably used to. The steward stood behind me, about to transport me, and began talking to my son as if I wasn’t there. There was paperwork to be completed for my inaugural ride and apparently, he couldn’t come round the front and talk to the senior adult here. I thought of that episode of The Office where Brent pulls the disabled woman’s wheelchair back from the table without asking. That felt like it was going to be his next move.

Soon, however, we were ready for take-off and I was being pushed through the throng of fans heading to the turnstiles. We were taken to the accessibility lift, our tickets scanned by a mobile device. I tried to divert my thoughts from having my disability passport stamped with the brightest ink colour yet. Instead I gave in to the daydream that I was a VIP being smuggled into the ground, away from the flashes of the paparazzi.

In the lift, we shot up the five floors. As the doors opened again, a disabled man appeared who was very thankful he hadn’t had to attempt that climb by his own steam. But now another problem became apparent. We were in the bar area and the crowd was dense. How were we going to get through to my seat. The steward behind me seemed reluctant to raise his voice to ask for people to clear a path, so we muddled our way through via a combination of me tapping people on the side and the corners of the chair digging into ankles.

Of course, even the half cut and those with bruised ankle bones were very accommodating once they realised what was happening, but it still depressed the hell out of me for some reason. We had finally arrived, though. God, we were high up! My mind flashed to that scene when Leslie Nielson sends the wheelchair-bound OJ Simpson down the steps with a backslap in Naked Gun. I got out of the chair and thanked my helper before anything like that could happen to me.

Back using my old faithful mobility aid, my stick, I now just had to negotiate a few steps to get to my row in the stand. When I got to my row a relatively new way of helping my progress was utilised too. I’ve recently found that if I have to move along a row of seats at an event, I have to pre-warn the people standing up for me that I may have to lay a hand on them to steady myself as I shuffle past. Thankfully, the shoulders have so far always belonged to adult men. I wouldn’t feel quite so comfortable telling a woman or child I may have to touch them as I went by. Even more so with my lack of balance. A mishap would not be out of the question and suddenly I might find myself signing a register at my local police station once a month. Anyhow, so far at least, when people have seen my stick, they’ve been happy to be of assistance.

The view from my seat when I finally made it there. Told you it was high up.

So that was my journey from Wembley Park tube station to my seat. As

Neil Armstrong might have said in an alternative reality, ‘That was one small step for an able-bodied man, one giant leap for a man with a progressive disability’. The leap in this case was from a walking stick to a wheelchair. I’ve imagined that day many times, but it was still shocking when it happened. Hopefully, I won’t be seeing it again at least for a year or two.

As for the match, well, another failure by Leeds in the play-offs welcomed normality in once again. The disappointment at the final whistle and the strong desire to vacate the stadium as quickly as possible meant we didn’t bother trying to find a steward to get another ride in the lift. In a daze of discontent, we just headed down the stairs, all five flights.

Much easier to go down, of course, and my legs were feeling fairly strong again after their break. Like I said at the beginning of this account though, when will I learn? I didn’t think the descent had taken that much out of me, but back on the ground, the weakness soon took control again. The walk back to the station was as harrowing as the walk from it. We also got rained on this time, just in case we weren’t feeling miserable enough. Several pauses were required to make it back, plus the intervention of a steward, who allowed me a short cut through the crowd to the station.

The seat on the tube and then the car were only marginally less welcome than the site of Leeds scoring the winning goal in a play-off final (something that will forever be denied me, apparently). I rested my legs for 20 minutes, then I merely had a 276-mile drive to negotiate. But then what is a car but a glorified, motorised wheelchair. Bet you’ve never thought of a car like that before. In my head, thoughts of wheelchairs were suddenly everywhere.

Positive mental attitude and all that

Don't look up

A couple of years ago, I did that thing most of us MS folk are guilty of at times – I ignored the fact I have MS and went steaming into a task that was quickly going to finish me off.  I had a large rabbit pen to build in the garden at our new house. Yes, it was a hot day, but it couldn’t be put off any longer.

Of course, it quickly became clear this was not going to be a one-day job. Fetching tools and dragging the box the pen came in down the considerable slope of our garden rapidly did me in. I sat on the garden wall for ten minutes, staring at the parts in the open box. Ten minutes used to be enough for me to feel ready to go again, but not any more. Recovery times are now measured in hours.

Well, it was a start. I began to climb the slope again, but was overcome with fatigue. I collapsed to the ground. And that was when my wife found me, crawling up the slope of the garden on my hands and knees because it was now the only way I could move.

Now this may have been a time to think about everything I had lost. I was a man in only his early 50s and here I was, crawling in my garden like a lame tortoise because I didn’t have the strength in my legs to walk. But then my wife did something that made me feel much better. She laughed. I started laughing too. The absurdity of MS laid bare.

I was looking up physically, due to the slope of the garden. But not metaphorically. A good way, I’ve found, to cope with MS is not to think about what you’ve lost. Much better to think about what you still have. It may sound trite saying “count your blessings”, but I’ve found it’s what I need to do whenever I feel the pressure of MS bearing down on me.

I was frustrated by the thought that I couldn’t just get on with this task I’d set myself and that I was likely to be out of action for a good while. But at least I had a nice garden to crawl in and a nice house in which to recover. And a wife to laugh with and support me.

My condition could be so much worse too. I may not be able to play sport any more, which is a big loss, but I’m still able to get around by my own steam mostly, which is a real plus. Having to use a stick is annoying, but it’s better than the alternative. I’m lucky enough not to experience any pain either. Spasms mean I don’t sleep well, but being kept awake by pain would be awful. Rather than feel sorry for myself, I try to empathize with those that are hurting.

There’s nothing wrong with my vision either, or my hearing (other than normal age deterioration). Easy to take these things for granted, but MS has taught me not to take anything for granted when it comes to your health. So I can still read, watch TV, go to football games, listen to music – all activities I love. MS hasn’t managed to rob me of these yet.

*

I feel obligated to say here that rabbits should not ideally be kept on their own. I’ve always kept them in pairs, but one of this pair had died the year before and after twenty years of keeping rabbits, this part of my life was going to have to end. Increasing disability meant looking after them was becoming too much. Another part of my life shut off by MS, but it was fun while it lasted.

And whilst I'm on it, please don’t keep them in a hutch all day.

*

I had another go at the rabbit pen later that day. I got the parts out of the box and fitted a couple of poles together, then started to struggle again. My wife took over, while I mused on that famous quote about work, which goes something like, “Work fascinates me. I can sit and look at it for hours.”

 

Soon a frame had appeared. I was full of gratitude I had someone who could help me out and that this wasn’t going to turn into a three-week epic. I’d recovered enough by this time to help fit the chicken wire all around it and a rabbit was hopping about in the pen later that evening. I have a feeling it was blissfully unaware of the effort it had required to build its new home. But I remained aware that, despite MS, life wasn’t that bad.

Postscript: the rabbit died only five months later. I was very fond of that bunny. I was sad for a while, but then thought about how she’d had a good life. We’d just come out of a pandemic; other people had lost so much more. I didn’t look up.

Balls to standing up

Confessions of an Ms-Er

There’s a beautiful Eels song called ‘It’s a Motherfucker’ about being without the person you need to be with. The title could so easily be applied to the story of a life with MS. Which brings me neatly to the tale of an Eels gig I went to in the early 2000s. Now that more than twenty years have passed, I feel able to confess the small sin I committed in attending this concert.

I don’t believe in such wishy-washy, unscientific notions as karma, but this episode could certainly be described as ironic. Prior to me ever giving a second thought to multiple sclerosis, me and my girlfriend (and wife to be) had tickets to see Eels at Leeds Uni. We were both only in our early 30s, yet neither of us fancied standing up for two hours, pressed amongst a load of sweaty strangers, listening to the songs of our favourite American indie-rockers.

We knew there were a few seats on the balcony in the venue, but how did you secure a place up there? It seemed you either had to be on the guest list, or disabled.

A plan was hatched. We didn’t know of any way we could get on the guest list, but… what if we said one of us couldn’t stand for that amount of time? Faking disability to gain advantage would obviously be wrong, but what if a temporary injury was introduced to proceedings that necessitated the procuring of a seat for this rock ‘n’ roll gig? Yes, I know, it doesn’t cast the most favourable light our way, but we were young and thought it would be a laugh. Just to see if we could pull it off seemed like it would be an adventure. And what harm would it really be doing? The only reward for our deception would be a seat and a better view.

It was ‘Kate’ who really wanted to sit down, but it was me who took the decision to fake the injury. I had a pair of crutches in the attic from when I’d twisted my knee. These could now be the basis of my sprained ankle story. I called the venue and explained my problem. Would there be any possibility that a seat could be found for us on the balcony? Yes, no problem, came the reply. Just report to the ticket office and someone will sort you out.

The evening arrived. The tickets were in my pocket and the crutches were in the boot — everything the music fan with insufficient respect for themselves requires for an evening at a concert. We parked up a few hundred metres from the venue in the university car park. I’d bravely done the driving with my sprained ankle, but made sure as I exited the car that I was fully in character. Just in case anyone going to the gig was taking any notice of me, I leant on the car to get to the boot to retrieve the crutches. I then faced the first challenge — trekking to the venue entrance with me hopping on my crutches, my right leg bent to raise my poorly ankle from the ground.

I’d forgotten that using crutches was not that easy. The pressure it puts on your hands and the pain it delivers to your arms was making me instantly regret entering into this little ruse. This whole thing was to avoid the trouble of standing for two hours. Making progress pretending to be someone temporarily disabled was proving to be just as much effort. But in for a penny. Half the reason behind this decision was simply to see if we could get away with it.

So, I was now climbing the steps at the front of the building and we were heading for the ticket office. By this point, I was feeling worse for wear, which helped me maintain my persona. Staff were called and we were collected to be taken to the gallery. This was challenge number two. We were led down steps, up steps, down corridors, round corners, the lot. Where the hell was this lift that would take us to the first floor? We were getting a full tour of the building. Fortunately, no one was questioning me much about my apparent misfortune. The staff weren’t interested. I’d got some injury. That was all they needed to know. I mean, it’s not like anyone would fake such a thing just to get a seat on the balcony. That would be the behaviour of a madman.

Finally, we were in the lift and within seconds, we were in amongst the VIPS. I had no reason to suppose they were really VIPs — they may all have been feigning injuries themselves, for all I knew — but my internal dialogue was bigging us up. We were VIPs and now were sitting on a bench, high above the hoi polloi. My performance as an invalid had been Oscar-worthy. We had done it and I could relax and enjoy the show.

Watching from up there, it felt worth it at last, particularly as we had the glow of having got away with something. As the band played, I looked down every now and then at the crowd, squashed together, imagining the heat and their discomfort. None of that up here. I may have briefly pictured what life would be like if I suffered more than just a sprained ankle, living with a permanent disability. Hell, who am I kidding? Of course, I didn’t give a second thought to that. I was too busy enjoying having a seat and listening to one of my favourite bands.

Disability was something that happened to other people, anyway. I was young and fit. I looked after myself reasonably well. I had a girlfriend who was altering the path of my life in so many positive ways and was still prepared to indulge my daft schemes. Life was looking good. A continual upward trajectory till old age was my undoubted destiny.

The concert ended, once the charade of all those ‘unexpected’ encores was over*. We headed back to the lift, my ankle once again raised from the ground as I dutifully employed my crutches. The rest of those leaving gave me some space, as I projected myself along the corridors towards the exit doors — another clear advantage of my fictitious accident. We were outside; I’d done it. I levered myself down the stairs and began the long journey back to the car. 

It seemed a long distance, anyway, for someone who couldn’t walk normally. The goal had been achieved and I was struggling to summon the effort required to continue this pretence. But there were a lot of people leaving with us. I couldn’t just tuck the crutches under my arm and continue on my merry way. Could I?

Once we had reached close to the car, I thought fuck it. My ankle miraculously healed itself and I was able to walk unaided again for the last stretch. I didn’t look back, but I like to think I left a few jaws gaping. It was like a sketch straight from Trigger Happy TV and provided an entertaining finish when the story was later told in the pub. The crutches were thrown in the boot and I prepared to drive home, a perfectly able-bodied man once more.

^

Thing is, I think it was that very same year, or maybe it was the year after, that I first experienced the mild, intermittent symptoms of MS. Pins and needles in my leg, the same leg I had lifted from the ground to fake an injury. Only this was real and the start of something rather worse than a sprained ankle.

Like I said earlier, I don’t believe in wishy washy nonsense like karma, but some would say there’s a certain poetic justice in this turn of events. Those people, though, are idiots. A silly prank pulled for nothing more than the chance to add a little interest to an ordinary life and to get a seat at a concert bears no relation to the destruction brought on a life by multiple sclerosis.

MS means I have to think about the effort involved in walking every time I go anywhere, no matter how short the distance. MS means I have to have a seat at a concert now, no arguments. MS means I always have a walking aid in my hand whenever I am heading somewhere under my own steam, dragging my feet, tripping over anything as high as a tree root. And MS means never miraculously recovering, even for a moment. It’s with me for life and that Eels concert all those years ago, in my able-bodied days, is an evermore distant memory.

So poetic justice, no. Just a good story from another time. And the story today is one framed every day by MS.

It’s a motherfucker, that’s for sure.

*Actually, Eels at the time were a band who could surprise you with an encore. We know that almost all bands will depart the stage and return within seconds, whether the crowd is demanding it or not. Often, they may even come back for a second encore. But Eels might do this three or four times, and sometimes that fourth one would be a good ten minutes after they last left the stage and all the house lights had come on. I saw them at Hammersmith Apollo once and half the audience were already out on the street by the time they came back on to play their biggest song of the time, ‘Mr E’s Beautiful Blues’.

Extract from the book Balls to MS

Visions of the Future... and of Cocks

Wondering if buying Balls to MS is a good idea? Have a read of this and see if it's for you. As we join the story, I’ve just been talking to Roger, a guy at my workplace who also has MS. He was diagnosed around three years after me, but his progression has been quicker. For the first time, I’ve just seen him use a wheelchair at work. He says he’s been using it more and more. It’s made me worry about what the future holds…

I start to back away, as a method of extricating myself from this exchange. It doesn’t appear to be heading in any interesting direction. Certainly not any direction I wish to travel and besides, I really need to pee, having left it and left it in order to give myself a chance of emptying the bladder this side of lunchtime. We say bye and I enter the disabled toilet. We’ve moved building and here, for added humiliation, the disabled doubles up as a ladies toilet. Two plates on the door – one showing a stick man with a Kim Kardashian-size arse and another showing a woman with an afro and a single fat leg. Neither appears to be aimed at me, but how little people know or could understand. Firstly, there’s the privacy. No one in the room or parked in the next cubicle making arse noises. Then there’s the metal bar I often hold onto, as well as a cistern at the right height that my phone and I can rest upon. It’s a bit of a walk and I have to descend the stairs to get here, which is ironic, but this is my sanctuary from a world that never has to give a second thought to the process of peeing.

Dark reflections have entered my sanctuary, however. Poor old Roger. Who am I kidding? Poor old me. Were his troubles just a vision of the future? Is that where all this is heading? I try to concentrate on the matter in hand while simultaneously relaxing but achieve neither. As usual, the first drop of pee is showing its usual reluctance to appear, even though I can feel the tank is nearly full, and this makes me think of Roger even more. From previously frank discussions, I know that his problem is the opposite. When he needs to go he really needs to go, otherwise he might piss himself. As a result, he once tried the old catheter as recommended by his MS nurse. The frankness continued as he described how the pain involved led him to giving it up as a bad job before the tube had made it halfway up, which made my mind picture his cock in HD, despite my best efforts to visualise tits and only tits. I wonder how he’ll get on now he’s using a wheelchair on a regular basis? When the urge comes will he leap from the chair and start pacing quickly to the bathroom? If he’s in a public place, will it seem like a miracle, or will bystanders wonder if he’s a malingerer who’s just too lazy to use his legs most of the time?

I bore a hole in the white wall before me with my stare. When will this future visit me? Witnessing Roger in that wheelchair has got me thinking more clearly on the numbers and when it comes to MS, thinking clearly is the last thing I want to do. I’m unlikely to be retiring for twenty years. I’ve had MS for less time than that, so logic suggests... I want to travel more in my retirement. Where could I comfortably travel to if I’m on crutches or in a wheelchair? I wonder if this worms its way into Kate’s thoughts? Does she ever consider that in her retirement she’ll be pushing me rather than us walking hand in hand? At least I’m not Hannah’s sister. At least I’m not Hannah’s sister. But I could soon be a Roger. One major relapse, that’s all it would take. Or just the passage of time, a few years of time.

Should I be crying? Part of me wants to cry, but I’m a million miles from doing so. It always feels so unreal. Even though I have MS, I still hang on to that most human of instincts – hope, or to be more precise, the sense that really bad things happen to other people, it won’t happen to me. Isn’t that strange, because when I look back on the last ten, thirteen years, lots of bad things have happened to me. Maybe it’s useful to be a dreamer, living in my head, living in a sitcom of my own creation, instead of real life.

Real life. What will that be like in three, five, ten years? Will it be a steady progression? If so, at what pace? This one? Working it out, gauging how much better I was three, five, ten years ago sends a shudder through my soul. Ten years ago, I barely noticed anything was the matter. Five years ago, I was noticeably worse, but still fit. Still able to run, play football. Three years ago, tiny bit worse, but still not really any severe restrictions on what I could do. Just a need to be a bit cleverer about certain tasks. Do things in stages. Allow for the fact that MS will affect how long I can move before my body hits the brake.

Now? Well still no wheelchair, no crutches, no stick. But no football. And I did take a quick look on Amazon the other day, to see what was out there in the world of walking aids. It depressed me too much to form any strong opinions, but I know it’s on the way. Just a matter of when. As I run these days, I creak, like the metal hinges that act as knee joints for my wooden legs need a bit of WD40. Running at all will be the next to go. The first rung on Roger’s ladder. That’s probably the wrong word to use. The correct term would be to say I’m on the head of Roger’s snake. No, that just sounds wrong, like Roger has a huge shlong and I’m about to fellate him. Godsake, the point is a simple one. Sometime soon, I’m likely to follow the path that Roger started on before me and that path only heads in one direction – down. Can you have a path that heads down? Yes, course you can. Downhill. I was thinking of a vertical descent but a gradual slope down is probably more appropriate as a metaphor. It certainly works better for me; more palatable.

Is choosing the most apposite metaphor really the best use of my time here? Is that what is really important – how steep is this path? Something has just come to mind that is rather more pertinent. I recall now that Leezou once told me that after about ten years of living with relapse remitting MS, many (or was it most?) sufferers experience a progression of the condition, as it develops into what is known as secondary MS. Not as bad as the primary that Hannah’s sister had but worse than relapse remitting. Secondary is a steady progression of the disease. It’s what Roger has and, in all honesty, what I probably have now.

Bugger.

Secondary. Known in some circles as Roger’s snake. No, stop it. You’re thinking again now about Roger’s cock. If you’re going to think about anybody’s cock, think about your own, the one that’s dribbling piss into the toilet at a wearisome pace. My phone bleeps with an alert. Great, inconsequential bullshit that I could have lived without knowledge of and the jolt has made me involuntarily clench, halting the flow. This will require all my powers of concentration to get started again. Or maybe I’ll use that other tactic, not think about it at all and wait for nature to take effect in all its fucked-up glory.

I open Kindle on my phone and begin to read the book I currently have on the go, a Bill Bryson. I wonder if when authors write a book they ever stop to wonder about the number of people reading their books on the toilet? Bet there’s not many who can get through two or three pages while just taking a leak. But that’s me. Phone propped up on the cistern, cock out, tinkling occasionally disturbing the peace.

I’m often in this position when the phone rings too. I usually ignore it, but sometimes it’s important. So as well as reading, conversations go on with the cock out. And if it’s important, that usually means something official, like E’s school calling to tell me he’s had a bump on the head, can someone collect him? Ah, modern life. Before the age of mobile phones, I doubt many conversations with officialdom went on with one party standing there with his cock out. Now these interactions are going on across the land, every day. And in this very moment, I’m standing here with my cock out, with the image of other men with their cocks out in my head. I try to focus on women with their trolleys down to their knees, everything on show as they discuss insurance claims with faceless individuals in call centres but I have to admit, it’s not as arresting as the image of men with their cocks out.

Oh, thank God, the last few drops have crawled down my urethra and fallen into the bowl. I can put it away and stop thinking about cocks. Great, now I’m thinking again about what life might be like in ten years’ time. Will it be a walking stick all the time, will I be asking Roger where he bought his wheelchair, if he got a good deal? Or will progression be at a pace similar to the one that regulates my visits to the toilet. Maybe I’ll be hanging on to some semblance of normality. Maybe maybe maybe.

I exit the toilet. Fuck! Linda almost falls into me, as she was about to try the door handle. Does she know I have MS? Has she heard on the grapevine? Even if she has, she sees me walking around, apparently without any disability. Is she just thinking, why is this pervert in the ladies toilet? If I explain, it’ll definitely sound like the protestations of a deviant caught in the act. Why can’t there be a dedicated disabled toilet? I just have to step aside and hold the door open for her. Holding the door open to the ladies bog for a woman when you’re a man who’s currently standing inside the ladies bog is not a good look. A part of me is now eager to cry. A part of me at least is dying inside.

Perhaps I should buy that walking stick purely so I have a prop to brandish in this very circumstance. Would it be worth it to avoid this embarrassment? Probably a decision that will soon be taken out of my hands.

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MS, You're Taking the Piss

Tickle My Balls!

Henry Miller, writer (did not have MS)

Henry Miller apparently once stated that to relieve your bladder is one of life’s greatest pleasures. You could never say that if you had MS. You’re either in constant fear of pissing yourself or you suffer from bladder retention and struggle to go (and keep going).

I’m firmly in the retention camp and Number 1 merely represents what I often think is its rank in my stockpile of MS symptoms. I don’t waste the opportunity of my book to have a good old moan about it. Here’s an extract that describes my tiresome routine whenever I’m standing over a toilet:

‘Every visit is like attempting to get a telephone connection between Timbuktu and Outer Mongolia through one of those ancient plug-in exchanges. Cables have been nibbled by the MS mice and it’s the telephone girl’s first day.

The process begins with some enthusiastic flicking of the head – yes, that one – in order to encourage some kind of muscle memory. Then I begin to stimulate nerves in the vicinity, which entails lightly running a fingernail over the skin. This can be pretty much anywhere between my waist and undercarriage. A favourite place used to be either side of the upper reaches of the bum crack, but I seem to have mostly worn this out now, and it takes some searching to find where the connection resides. In the meantime, I will use the other hand to grab the sink or whatever is nearby and at an appropriate height, or I will just lean against the wall in front of me – Kate is always complaining about dirty finger marks on the bathroom paintwork.

The final piece of the jigsaw is perhaps the strangest of all. I have to throw my head back, but not directly, at a slight angle, otherwise the messages from my brain can’t get through to my urethra. And I have to open my mouth in a slack-jaw kind of way, like I’ve been given a heavy dose of ketamine. My expression is exactly like Lou Reed’s on the cover of his lesser-known album, Ecstasy.

Then, if I’m lucky – it’s always worse when I’ve just woken up or it’s the middle of the night and I’m still half asleep – I might manage a single drip, like when Neil is trying to piss in Simon’s mouth at the end of the second Inbetweeners film, only this isn’t the prelude to a torrent about to enter the fray. It just means I’m finally out of the blocks.’

And there’s more, but I’ll leave that cliffhanger for those who go the whole hog and buy the book. I’ll offer this though. The methods employed to empty my bladder is an ever-evolving blight on my life and the latest aide de urination is to tickle my balls. Yes, you read that right. Sounds like it could be Larry Grayson’s new catchphrase, doesn’t it? Ooh, tickle my balls!

Only Grayson is dead, and my recent practice of tickling beneath the scrotum is alive and well. Is this too much information? Probably, but in both the book and on this blog, I’ve always striven to tell the truth. And tickling my balls is a help, right.

It’s just another way of stimulating nerves, giving my brain a gentle prod and saying, ‘Brain, come on, tell my bladder to release the cargo!’ If you’re a man who suffers from bladder retention too, maybe it could help you as well. Or maybe I’m just amused by the thought of hundreds of men standing astride pots tickling their balls.

Only problem is that I’m 53. If this continues for any length of time, my arms might eventually become too short to reach that area. I wonder if Kate would be interested in helping me out when the ballsack starts to bang against the kneecaps.

And with that evocative image, I will bring this latest post to a close.

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Married to MS

Being Best Man is never without its stresses, but being a best man with multiple sclerosis gives you other matters to think about...

I’ve reached that age where some of my friends are onto their second marriage. When my closest friend decided to marry again recently he asked me to be best man. Of course, I agreed, even though the position usually leads to untold stress for the ‘lucky’ appointee. Stress isn’t great for those with MS, but what could I say other than, “I’d be delighted.”

Fortunately, it proved to be more of an honorary title. The stag do was organised without any input from me and he didn’t even want me to do a speech. Just greet people when they arrive, look after the ring and conduct a few toasts at the reception.

So not too much stress. Well, you’d think, wouldn’t you. Half a dozen attempts at tying my tie in the hotel room meant I was late for greeting people. Nothing to do with MS – my arms and fingers are fine. It was just that dressing smartly is way out of my comfort zone and I have to wrestle with a tie once every two years on average.

And the responsibility of the ring! I gripped it tightly in my suit pocket for most of the pre-reception drinks. All the while, I kept thinking about when I proposed to my wife-to-be on a barge in Paris. The box containing the ring was in the very tight trouser pocket of my jeans. As I struggled to pull it out from its hiding place, my hand shot upwards and I almost chucked the ring into the Seine.

What if I dropped this one as I tried to pass it to the groom and it went skittering across the floor into the long grass behind the outdoor stage, never to be seen again?

This scenario was what was playing on a loop in my head while everyone else was listening to the vows and enjoying the romantic occasion. Of course, when my moment came there was no ring mishap and I could finally relax a little.

My greatest challenge, however, actually began once the ceremony was out of the way. Spending time with my oldest friends with a drink in my hand on a manicured lawn on a sunny day at one time would have been my idea of heaven. Now this kind of socialising was coloured by the fact it involved a great deal of standing.

I had elected to leave my walking stick in the room. It would just get in the way and be one more thing to carry and worry about. So I had nothing to keep me upright other than my MS-addled legs. I was coping while we were stationary, chatting, but once we were ushered inside to the reception I became all too conscious of the fact that I was swaying like a drunk.

Being a best man who looked like he’d been hitting the sauce from early in the morning is not the look I was hoping to cultivate. Without a walking aid, guests who didn’t know me (and there were many of these) would have had no idea that I had multiple sclerosis. To them, I must just have been pissed, and possibly an alcoholic. Perhaps they just thought I had been trying a bit too hard to calm my nerves before my speech (which wasn’t even happening).

Whatever, I had to grip Kate’s hand as we walked in and was very grateful when we reached our seat.

The nerves did soon start again, as the time approached for me to do the toasts. Eighty pairs of eyes were about to be fixed upon me, waiting for a man with no history of or training in public speaking, to smoothly thank all the right people in the right order.

One of the groom’s sons did his best to distract me from my anxiety. He wasn’t acting like he was drunk due to illness. He was properly pissed out of his head. His attempts at cutting up his chicken were comical, as his head lolled and his eyes clearly strained to focus. He must have thought the chicken still had some life in it and was deliberately evading his knife in the hope of self-preservation.

I found this slightly less funny when thirty seconds before I was ‘on’, his fork skidded across his plate as he continued to battle his poultry and he proceeded to splatter gravy onto the three guests to his left. One of whom was me. The suit I had just spent fifteen quid having dry cleaned, along with the tie that was making its debut appearance all got a light dousing. Dexter would have been in his element establishing the source of the spatter pattern, if it had been blood and not gravy.

So I got to do my toasts while all the time wondering if my audience could see the spots of gravy on my tie. ‘Not really surprising that he’s spilt down his front. He was clearly drunk before we’d even sat down. But how did he manage to get gravy down the side of his suit? Poor sod.’

I think I did OK, though... for a pisshead covered in gravy.

*

For the evening do I knew I’d get tired. Fatigue mixed with the drinking of an afternoon session meant I would have to take my stick out with me. As always, it made me feel a little self conscious, but as alcohol took an ever firmer grip, I began to care less and less.

This was particularly true when I realised the advantages it was affording me. For example, when I headed down a corridor to get somewhere, people gave way to me like I was royalty.

And I always hated being pressured into dancing at a wedding. There were a few years back in the late 80s and early 90s when I quite enjoyed getting down to Goth and grunge anthems, but even before MS, as I got older, I generally felt uncomfortable whenever I found myself on a dance floor.

Cheesy wedding disco music was another thing altogether. This always had me running away screaming. Now I couldn’t run, but that was my 'getout' – every time anyone tried to get me up on the dance floor to get down to the cheesy music, I just reached under the table and held up my walking stick, coupled with a wan smile. “Of course, I’d love to, but it’s this friggin’ MS.”

But my friend’s wife had other ideas. She was in a dancing mood and even though she knows I have MS, she was not taking no for an answer. “I have no balance,” I said. “I’ll fall over.”

“I’ll hold you up,” she said, quite reasonably and very annoyingly.

“No, it’s a bad idea,” I protested.

But she was already hoisting me to my feet, which was some achievement as she is only short. I looked down at her from what seemed a very lofty perch. I mean, I always knew she was short but I was literally head and shoulders above her. I flirt with six foot but nothing more. She is very familiar with five feet.

What she lacks in inches, however, she made up for in grip. She was not letting go of either hand. I suddenly felt like Stephen Merchant dancing with a child, the type of dance you often see at a wedding – an adult indulging a toddler. It didn’t help that it was ‘I’m a Believer’ by the Monkees. I associate it strongly with the end of the first Shrek film, a film I watched on repeat with my son when he was pre-school.

Falling over now seemed like the better option. But she was holding on for grim death, something which also seemed like a preferable option to performing this pathetic and childish dance. All I could do was grimace and bear it, counting the seconds till it was over. Hey hey we’re the deeply embarrassed.

It finally moved onto the next song and she released me. I slumped back into my seat. What was the point of having multiple sclerosis if you couldn’t get out of dancing to songs you don’t like at a wedding? I guess she didn’t want for me to think I was being left out because of my disability, but I was actually thinking bloody brilliant. Another hidden advantage of having MS.

Oh well. One song in ten years is not much to complain about, I guess. And I’ll probably never dance again.

I bloody hope not.

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Walking Stick MS Trauma

AULD FAITHFUL TAKES A HIT

I usually only go on a dog walk if my wife, ‘Kate’, is coming too to keep me company. This has the added benefit that she does the bagging up of the dog’s crappage. Well it’s her dog and besides, I find it difficult bending down and picking it up. I need every joule of energy to make it through the walk.

It’s also awkward for me to do the deed because I have a walking stick in one hand. I admit, I’m not exactly fighting her for the right to do it but my excuses are genuine.

I decide to take the dog out on my own for once. Ellie hasn’t been out for a couple of days and I have a banging headache. Probably the result of another night of broken sleep due to the infernal twitching of my leg when I’m trying to sleep, but whatever, I crave some fresh air and need to get out of the house myself.

Ellie refuses to follow me to the front door. ‘Come on, y’daft dog. We’re going for a walk.’

This is another reason why I don’t like going for a dog walk on my own. Usually when I take her out alone it’s either to take her for her hair cutting or for her annual jab at the vet’s, both of which of course she hates. So I have to go back into the kitchen and drag her outside across the tiled floor.

We get in the car and I head to the park. This particular one is near the dog groomer’s and she sits shaking in the passenger seat the whole way, fearing another hair chopping is on the cards. ‘A walk. We’re going for a walk, y’stupid mutt,’ I say stroking her head to offer her some reassurance [legal edit: as I pull over in a safe place and am at a full stop and definitely not whilst I’m still driving]. In case you hadn’t noticed, your fur is still really short. You were only done two weeks ago. Do you seriously think I’d be taking you for another cut so soon at £30 a pop, I think, as she continues to tremble?

Thankfully, we soon arrive. Her paws go up to window level and she looks out. ‘See, I told you, a walk in the park.’

I leave her in the car while I retrieve my stick from the boot before opening the passenger door. She leaps out. Why she’s happy to do that yet insists you pick her up to put her ladyship back in the car is a mystery, but she seems to be undecided whether I’m the boss or just staff.

We head off and I’m soon able to let her off the lead. Another few paces and she begins circling, like she’s chasing her tail, which can only mean one thing – her first present is about to be delivered courtesy of her quivering arse. I don’t mind too much because she’s chosen a spot in the direct shadow of a bin, so I won’t have to carry it around with me like that scene in Borat where he comes back to the posh dining table carrying a little pouch after his toilet visit and announces, ‘I had a good shit’ (guess what’s in the pouch). Well I say I don’t mind, but that’s before I see it. All that nervous shaking in the car must have had an effect and her crap has the consistency of an unappetising mound of chocolate moose. Great. And these bags are not the thickest. I hate picking it up when it’s still warm too. I clear up a few in the garden, but they’re always cold, which seems to make the exercise more palatable, but hey, as a responsible member of society it has to be done, right?

Only this responsible member of society has the added complication of a walking stick in his hand, even though he’s still in his early fifties. There’s nothing to lean it on and I don’t want to put it on the ground. There’s still a thin film of water on the ground after the recent rain and I don’t want to get the handle wet, so I lean it against my groin area at the front of my coat. I open out the bag and lean down towards the light-brown-you’d-think-I-was-just-recovering-from-diarrhea mush on the grass. I look across at Ellie having the time of her life sniffing other dogs’ piss in the nettles further down the path while I’m having to do this savoury job. A man’s best friend? Right. My real best friend doesn’t take a dump in the park and wander off, leaving me to bag it up. Not often anyway.

Well here goes, I think wincing, but my motion is interrupted as I feel my walking stick fall from its angled position. I try to stop it but I fumble my attempt at catching it and only manage to affect which bit of wet grass it’s going to meet. Only it doesn’t come to rest in wet grass. The handle of my walking stick comes to rest, as you might have guessed by now, plum in the middle of the diarrhetic shit hillock.

Bugger.

AULD FAITHFUL

Irvine Welsh's serial shagger character Juice Terry calls his penis Auld Faithful. For me, it's a walking stick.

I hold onto the sliver of hope that maybe the handle is non-stick and will somehow repel this particular texture of shite but it seems unlikely. I lift it up (not by the handle obviously) and assess the level of disaster. Double bugger. If this amount was on toilet tissue in the bathroom, you’d know you weren’t going anywhere for a while.

I search my pockets for tissues. The double bugger is escalated to a for fucks sake. I have one small tissue. Before employing it, I wipe the shitty side of the handle in the long grass, then inspect the damage once more. By the end of this walk I’m going to be gripping this handle very tightly, so this situation is far from ideal.

I get to work with my scrap of tissue. Fortunately, the handle is very smooth on the sides so it’s not sunk into any kind of grain. I remember stepping in a great lump of it years ago in Caterpillar boots. The tread on those might give you a lovely grip of any surface, but it also means that any shite-goo has a thousand crevices and corners in which to hide. I spent over an hour with an old brush and a bucket of water cleaning it out. Pleased with my work once it was done, I walked into town, looking forward now to my night out in my freshly clean footwear. Only problem was, I managed to step in some more on my way to the pub.

On the shoe is one thing though. On the handle of your walking stick is another. I detect a metaphor here used to illustrate what it’s like having to use a stick to go for a walk when you’re not long past your 50^th birthday.

I dispose of the tissue and finally bag up the dump-mound that caused all these problems in the first place. I’m able to make it the short distance to the lake that sits in this park without having to employ the stick, what with it being so soon in the walk, before my legs start packing up. I dip the handle in the water and swish it about. I catch my reflection in the ripples – a middle-aged man cleaning shit off his walking stick.

That’s right, I’m standing here. I can still see my face and the trees all around, the heron that’s coming in to land in the nest in the middle of the lake. I can hear other birds calling to each other. I’m moving my upper limbs freely. My balance may be bad but not so bad that I lack the confidence to stand so close to this water. I can still enjoy scratching the dog behind her ears. And I’m still able to walk a bit, even if I do need a bit of help and plenty of rests.

Satisfied that the handle is as clean as it’s going to get before I get home, I retrieve Auld Faithful from the lake and once again put one foot in front of the other.

[TO READ FURTHER POSTS, CLICK ON THE ARCHIVE AT THE TOP RIGHT OF THE PAGE ON DESKTOP, OR THE HOME BUTTON AT THE BOTTOM OF THE PAGE IF READING ON A PHONE]

[To order Balls to MS: 20 Years of Discovering Your Body Hates You, follow the link below, where you can also read reviews.]