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