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.
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.
[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.]