I’ve a pain in the face from talking
‘Some days you just think, God, really? Are we doing this again today?’
SO it turns out I’m not the only one with a pain in my face. I mentioned here recently about the neuralgia or atypical odontalgia, or whatever it is that has had my gums and teeth on fire on and off for the last 20 years. And of course we all think we are individuals, but really, there is nothing unique about us. It turns out that face pain is some kind of modern-day plague. And thank you to everyone who wrote to me with the various things you and your loved ones have tried, and to tell me what worked and what doesn’t work.
Common things across many people included years of inconclusive dental examinations and often extensive dental work. Many people were basically told there was nothing wrong and it was all in their heads. Many of you are clearly driven to distraction by it, unable to sleep or to concentrate or to be happy. For some it is a minor irritant while for other people it’s a major chronic pain issue that defines your lives.
Cures that people swear by include everything from acupuncture to mild doses of anti-depressants and anti-convulsants to Botox to various surgeries, with many people, in desperation, having tried many different routes. No one who wrote to me was actually claiming a complete cure but different things seem to offer varying levels of relief. Lots of people seem happy just to get some bit of relief and many people seem to have pretty much given up on the notion of ever getting ‘cured’.
For those of you in the club, my update is that I had the cortisone nerve-block injections and they’ve given me some relief. I think there are more good days than bad days now. Funny though, now that I’m thinking about it and talking about it right now I can feel it actually flaring up. The head definitely plays a part, so right now I am basically deciding I’m cured, so I don’t feed it with my head. Let’s move on, fast. I woke up and got into the shower the other morning with the radio on and something came on about the Special Olympics and I actually thought, “Oh God. I can’t do this today” and I zoned out. I know I shouldn’t and normally I get a great buzz out of seeing or hearing stuff about the Special Olympics. But some days you just think, “Oh God, really? Are we doing this again today? Do I have to think about DS today?” I suppose it’s been a very DS couple of weeks. I wrote a bit about it and ended up talking a bit about it, and you get worn out. And then I’ve been doing bits and pieces of publicity around the return of Cutting Edge and inevitably some of them want to talk about me talking about my Mary and the situation in general about supports with kids for disabilities etc. I recognise that this is my own fault for bringing it up in the first place and also I recognise that as a parent who gets an opportunity to remind people that our kids exist and that they get fucked over by society, I have a duty to take any chance we get. I also recognise the tremendous goodwill that media outlets have in wanting to help get this story out there.
But I get sick of listening to myself sometimes, as if I’m setting myself up as some sort of spokesman for people. I try to make sure I don’t moan, but it’s hard not to sound moany. Also, there’s some sort of implication when you talk about this stuff that you are in some way a good person, and that you know what you are on about. Neither is true in my case. I’m just muddling along. And I speak for no one but myself. And actually we don’t have it that hard in my house. And Mary is a great girl. And in her own way Mary has set us all free. Because when you have one person in the house who is never going to do a PhD, it makes you realise that actually PhDs aren’t that important. And that all I want for both my girls is that they would be happy. And if that involves the Leaving Cert well then that’s fine but if it doesn’t that’s fine too. And that goes for both of them. And Mary helps us all realise too that there’s no point in thinking too far into the future because we never know what’s in store. So we should just try and lead our lives now, and try and be as happy as we can now, and look after the future in the future. Mary is free in ways you and I are not, and thanks to her so are her family.
Brendan O’Connor’s Cutting Edge returns for a new series on Wednesday on RTE 1 at 9.35pm after the news