This post appeared on Courage To Shine and was reprinted with permission.
I'm going to talk about me. I should clarify. I’m going to talk about me, and my experiences of bladder exstrophy. I don’t have M.E. and bladder exstrophy.
I should also point that I’m a stand-up comedian and while the above isn’t intended as a joke, it’s an example of how accidental humour can creep in when you’re dealing with unusual medical conditions.
For example, although I’m a stand-up comic, I’ve never actually done any stand-up urinating. I intermittently self-catheterise, I’m a sit-down pee'er. In fact, the only time I’ve stood up to pee was when I came out of the hospital and went straight to a gig wearing an indwelling catheter and a leg bag. Some very baggy trousers hid from the audience that their comedian for the night was secretly having a wee in front of them while telling jokes. Who says men can’t multi-task? At least it saved me queuing for the toilets, and it’s good to know I wasn’t the only one that night taking the p…
… Isn’t it best to start at the start though?
If you don’t know about bladder exstrophy, we’re something like 1 in 50,000 births. It’s congenital (which I only found out a few years ago means "since birth" rather than "with genitals"), and is an abnormality that essentially means my bladder was born having an out-of-body experience. Like belly buttons, most have an innie, but my bladder was an outie. I believe mine was splayed on my tummy, a bit like a spatchcock chicken. To be honest I can’t really remember. I just know it was a surprise to my parents back in the late 70s, though nowadays scans generally pick up this kind of thing.
I hear too that they fix these things much more quickly now. I had dozens of operations in the first few years; an epispadias repair, a colocystoplasty at the age of five, and a couple of bouts of peritonitis. I’m forty now, so I look back on those years being in and out of Great Ormond Street with relative fondness. My parents are the ones who went through hell. My memories are good ones, and maybe because I talk about it in my stage act, I think of it positively, even flippantly. Since my bladder was patched up with bits of bowel, I view as I wasn’t born with it, but it’s now mine… it’s my step-bladder.
I’ve been a stand-up comic for fifteen years and I’ve self-catheterized for thirty. Taboos on the comedy circuit come and go but when I’ve used the word “catheter” onstage, you can tell the audience doesn’t know how to react. The word is surely the butt of a joke, not the set-up. Perhaps “catheter” is the new C-word? The truth is, the catheter is not just a punchline or a stereotype of the old or ailing. For some of us – more than people think – this personal plumbing can join at any age. And it’ll be okay. Whether it’s something you’re born with or the after-effects of an accident or another medical outcome, cathing is just another quirk. I don’t see it as an ailment to be endured, rather, having to use one is like having to duck your head through doors if you’re a bit tall.
My kids asked me what era I’d like to have been born into. It has to be this one. If I was born a Victorian or a Tudor or even in the mid-twentieth century, I wouldn’t have survived more than a few days. So I’ve been lucky to have been born when I was and to have encountered experts like Philip Ransley, the brilliant urologist who essentially tried his ideas out on me and got it right. Thanks to great minds like him, I’m here to tell the tale despite one or two 50/50 moments on the operating table.
The physical help I’ve had over the years has been second-to-none, and I’m ever conscious of parts of the world where such healthcare isn’t freely available. Understandably though, a condition like exstrophy is still relatively new. Being such a sensitive area, more emotional help would've been most welcome, especially in the teenage years but also going into the twenties and beyond since many of us urologically challenged are late bloomers. The focus was always on getting the waterworks working, yet there could've been more attention and acknowledgment of my plumbing’s other, more fun use. Thankfully, there are now Facebook groups where my fellow exstrophites can share woes and advice.
I’m now happily married with two children (conceived naturally) and a dog (conceived… well that’s not relevant), so it’s all worked out well in the end. It took a decade or two to get here though. We tried a two-pronged approach, nagging my GP for access to a psychosexual counselor, as well as haranguing my consultant in London each year. I’m sure that today’s teens get a more holistic care package, or if they don’t, they fight for the chance to get their bodies working as they want.
I do feel lucky in all this, and aware that many with urological conditions have suffered far worse than me. That said, I’ve self-catheterized for more than thirty years, endured dire infections, emotional challenges, and cruel mockery from classmates and lovers (those are two separate categories). It’s certainly made me a stronger, stoical person. And it’s given me a ton of material for my stand-up act!