The Deal with My Voice

I feel like I'm having this conversation like twice a day lately, so I'm thinking an out-in-the-open blog post might help to fill everybody in on my situation. At the very least, maybe one or two people might not have to ask why I'm so inaudible. 

For those of you who haven't seen me anytime over the last year or so, I've been having some issues with my voice. Mainly, it doesn't work like a voice. If it were a fish, you'd throw it back. That is to say, it doesn't project, it's often raspy and it's just not... loud enough.

For those of you who have seen me in the last year and knew something was up with my voice, you may not know this: I have a diagnosis. It's a condition caller Recurrent Respiratory Papillomatosis, or RRP. It's not horribly common, but it's not unheard of. Basically, it's a virus on my vocal chords that causes persistent growths that interfere with my vocal chord vibrations, thus inhibiting my ability to speak. There's actually a foundation for it here, and a neat video on a possible treatment here. I actually spoke on the phone with Dr. Zeitels, who is in the video. Dude's worked with, like, Steven Tyler and Cher and he took the time to call me back, which I thought was pretty nice.

While this issue sort of come to a head in May of last year, this isn't necessarily a "new" affliction. You may remember tendency to clear my throat and lose my voice, which has been the case for as long as I can remember. While I can't say with certainty I've had this for years, I don't think It's unreasonable to assume my previous throat issues are probably related.

Now the next question is generally, "what are they doing for you?" The answer is, there's not much they can do. The regular treatment is using a laser to cut the growths off (not as invasive as it sounds). That's why if you saw me in January or February, you may have noticed my voice was better. The issue with that is, the growths generally tend to come back. There are some drug treatments (eg. Avastin, the one they used in the video), but according to my doctor, treatments are generally quite spotty and there's not much good research. 

The tough part about RRP studies is that it's such a sporadic condition that the growths could just not come back one day. So in the case of the video, that could have happened anyway without the Avastin and it's impossible to know for sure how effective the treatment is until they do a double-blind study with some decent numbers (which in and of itself is not an easy feat, since it's fairly rare).  

On the plus side, I just went back under the knife (well, laser--there's actually no knife involved) today. So I will be better for at least a little while, and hopefully a bit of a longer while. And while it's impossible to say, I'm honestly just thankful I know what's going on. There's something about having a name for a condition makes it feel so much better, even if it doesn't tangibly change anything. 

On a more personal level, yeah, it sometimes sucks having to repeat your order three times in a restaurant, or wanting to have a conversation and stopping yourself because of the difficulties involved. But there's definitely something to the idea of gaining perspective through loss. Yeah, I can't always talk, but at least I can still go for runs, or type in my blog, take a photograph, strum a few chords, or any of the other millions of other things that bring me joy.

I heard someone say once that having a stake in something you have no control over is good for you. I think this is definitely one of those situations. I am prepared to deal with this thing,  or cope with it, if need be and I'd say I'm no less joyful a person because of it. 


While my life may not be better because of this thing, but it's not significantly worse. So don't feel bad. While your head tilts and concerned looks are certainly appreciated, they're not horribly necessary. I'm A-OK. And as the vocal polyps are growing, so too am I. 

Thoughts on My Gradual Loss of Voice

Those who have seen me over the last little while probably have at least some knowledge of this, but for those who don't, I've been having some major issues with my voice as of late. It's to the point now where if there's more than three people in a room, you probably can't hear me talk. The question that invariably follows my squeaky attempts at talking is "what is it?" or "is it laryngitis?" The answer to that is, frankly, I don't know. My doctor seems to think it's some sort of virus. I tend not to agree with him (I've had a tendency of losing my voice for years). But really, no one knows. I'm going in for a biopsy in December, so hopefully that yields some answers.

My early response to this affliction was a mix of optimism ("it'll go away!") and feelings of minor irritation. It's just something I have to deal with for now and then it will get better. And then, after a couple of months of things not getting better (but rather, worse), I started to consider the possibility that this wasn't a temporary affliction--that even if whatever was bothering me was fixed, I still may never have a full voice again. Always the optimist, I thought "I'll always have the written word." I recalled The Diving Bell and the Butterfly. That guy wrote a book and all he could do was blink. I can still take pen to paper, type, send communications by way of punching... "Loss of voice? Is that the best you can do, universe?"

After a little over six months of this, I'm still in a similar place. But I've also started to realize the full implications of being voiceless. Things like quips, for example, are a thing of the past. Nobody laughs when nobody hears you. I'm also more selective about what I say. I have to avoid complicated social exchanges with people I don't know, to prevent any confusion or the inevitable awkwardness of someone not hearing you three times. I'm often the subject of pity, which is a mixed blessing. It is kind of heartwarming to see total strangers being so kind and empathetic towards something even I don't fully understand. But on the other hand, being on the receiving end of pity has a way of making you feeling a certain kind of pathetic. It's also made me a less attractive person (not in the sexual attractiveness way, because no affliction in the world can hide this raw sex appeal). I've noticed good friends hesitating to start a conversation because of the vocal barriers involved. Meeting people for a beer or a tea or just having a good, thoughtful conversation, which are usually my favourite things to do, are now almost not worth it. Furthermore, written communication has a number of barriers, like a misunderstanding of tone, the absence of accompanying body language... and the fact that some people just aren't great at communicating through reading and writing.

I'm very aware that things could be a lot worse and I'm quite thankful for every other part of me that is fully functional. I can't even begin to count the number of ways in which I'm lucky, and I'm certainly not trying to complain. I just thought some people might want to know what is going on and what my thought process has been on it, since I haven't been too vocal about it (pun intended).