Suffering in Silence

Let me start off by saying that I am very aware that I've used the term 'suffering' loosely. I know that there is proper suffering in the world, and I have experienced almost none of it. So don't let this post be confused for a cry for sympathy; it's not. I'm sitting in a heated house, with superfast broadband (in rural Wales!) and a bottle of ice-cold beer from my fridge. On a world-wide scale of suffering, I'm pretty close to the bottom.

What it is, or tries to be, is an attempt so share with you what it's like to live with Recurrent Respiratory Papillomatosis, or RRP, and how living with RRP has impacted my life and the lives of those around me. What's RRP? It's a massive pain in the ass, that's what. If that's not medical enough for you, look here. Not really sure how I got it, but after several years of losing my voice periodically after a night out (one too many YEE- HAAAAAA!s), one day I went to Dublin for a Five Nations (ah, the good ol' days) game and came back without a voice. And it never came back. It was only after a long while of waiting (too long, probably), that I asked to be seen by an ENT specialist, who confirmed that my vocal chords were covered in papilloma. Around 25 years and at least  as many surgeries later, I still don't have much of a voice - though, to be fair, it's much better than it was when I was known as the 'Hoarse Whisperer,' and basically had to mime my wedding vows.

For those of you who know me personally, you'll be aware that my voice is - interesting. I've got a very low, gravelly voice - think a white Louis Armstrong without the talent, charisma, or pot. I've returned home to the US a couple of times, and my old friends who may not have seen me in 20 or more years are always shocked - who is this froggy voiced Mr Bean? To the casual observer, it usually sounds like I've either got a bad cold, been on a huge bender, or smoked 40 a day since I was nine. Most of the time, none of those is true. But that doesn't stop people - lots of people - from offering me throat lozenges, or commenting that I sound like I have a cold, or out-and-out asking, 'What's wrong with your voice?' It got to the point one time, many years ago, when I replied to someone who asked that with, 'I've just been diagnosed with throat cancer - thanks for asking.' Her face went white and her jaw dropped to the floor. At the time, I felt a little bad - I mean, I (thankfully) don't have cancer, and to say that I did is disrespectful to those who do suffer. So, apologies. But I was SO fed up with having to explain my 'condition' to people, that I opted for a cheap and easy way to shut up a stranger. Not my finest moment, but it was very effective.

And I guess that's where this post is coming from. Although it sounds like I've just got a croaky voice, living with RRP is actually pretty inconvenient and, often, very frustrating. Again, I get it: 'inconvenient' and 'frustrating' are not the hallmarks of true suffering. 'My wallet's too small for my 50s, and my diamond shoes are too tight,' right? I get it. But hear me out (you'll have to listen carefully - see above). Having limited vocal ranges has some pretty serious implications on my daily life, especially as a father of three young girls. For instance, without pitch, I only have volume to work with. As such, it is very hard for my voice to convey any emotion other than anger. I cannot change the tone of my voice to express sarcasm, or humour, or levity. I have one note, and I can say words at a 'normal' level, or at a slightly increased volume. That't it. Think about trying to read a story to your kids, and not to be able to do any character voices. I tried it the other night and I just ended up coughing violently. My poor kids have to endure pirates, fairies, talking vegetables and crime-fighting iguanas all with the same voice. And you can forget about singing. I have developed a very skilled set of expressive dance moves in the car, simply because I cannot sing along. And that is one thing I really miss. I was never a good singer, but that can't stop people like me (and Adam Levine, apparently). So everything I sing is either down six octaves and in a range between 3 or 4 notes, or it's jazz hands, air punches and Broadway-level sweeping arm gestures. The kids are instantly mortified, but it's all I've got. Don't worry girls, as far as Embarrassing Dad Things that I'm Bound to Do in your Lifetime, you ain't seen nothing yet.

There is, of course, a practical element of this condition, and it can be quite serious. Imagine being in a busy and unfamiliar place, being responsible for small children, and not being able to use your voice. It can be frustrating, terrifying and futile. When the girls were learning to ride their bikes and it was just me out with them, I got so nervous/stressed about them riding off that I brought a whistle with me a couple of times, just to have a way to communicate. Because, again, any time I try to increase my volume, it sounds as though I'm angry. Which isn't really want you want when your 4-year-old is learning to ride a bike, or cross a road, or wants to run off into a crowded supermarket. Or, think about any public function... ever. Lots of background noise, poor acoustics... a voice like mine doesn't carry and soon gets lost in most pubs, restaurants, train stations, etc.  Coping with that means either becoming less engaged in those types of situations, or avoiding them altogether. Which really isn't me - or it didn't used to be.  But now, I find myself really dreading being in those places because I know that I will either literally have to shout in order to be heard, or sit quietly and just listen. I avoid phone calls because I spent many years of not being able to be heard - and still cannot speak on a mobile phone if I'm outside or in a busy place. All of this had led to me becoming more socially withdrawn and less publicly confident - out of just sheer frustration. And let's not forget the people on the other end of my voice - they've dealt with this, too. Over the past 25 years or so that this has been going on, the constant straining to hear, asking 'pardon?', or trying not to think you're being yelled at takes its toll on human relationships, and has made it all too easy to just stop trying to communicate altogether.

You can, if you look, find the positives. As a coach it was always a very useful tool to get people to be quiet and listen. And, according to lots of really helpful - and slightly inappropriate - strangers, I have been convinced that I'd have a very lucrative career as a phone sex operator. And thanks to today's uber PC-world and Kathleen Turner, I can call customer services and claim to be my wife without being questioned. So it's not all bad.

But, and maybe this is the simple point I'm trying to make by writing 5000 words, don't assume that because you can't see my condition, or that it manifests itself in way you think you recognise as a result of my own misbehaviour, that it's OK to mock me or to make light of what I, and those in my life, are going through on a daily basis. Would you offer a crutch to a stranger with a pronounced limp, or ask them how they did it? Maybe - but probably not. And not because you're not a helpful or kind person, but because you probably recognise their condition as none of your business. You have no idea what happened, why they are how they are, and what impact that might have on their life. And unless I have panda eyes and reek of donner kebab and Snakey-Bs, you probably don't know why I speak the way I do, either.  So please don't offer me a Strepsil. Just bear with me, listen closely, and understand that this is the best I can do. I haven't lost my voice. This IS my voice.