As the more eagle-eyed of you – or perhaps just those of you who are awake, paying attention, and had your medication – will remember in February 2012, during the lead up to Rare Disease Day 2012, I ‘outed’ myself.
Now, before any of you get the wrong idea I didn’t come out as gay as I’m not that way inclined – not that there is anything wrong with that, of course, and not that I possibly wouldn’t be tempted if Ryan Reynolds turned up at my door with flowers and a smile – I just happen to prefer women; and, by women, I do mean woman as I am extremely, happily, married to a wonderful one who may be a tad annoyed if I suddenly became polyamorous though, again, if Sandra Bullock came begging at my door … but I digress. When I say outed I simply mean that I made it publically known that I lived with (not suffered from, remember!) a rare disease or two. If you want to know more about that you can easily find out by looking back through my blog posts.
I’m lucky, I know that. My muscles are weaker than average, I fatigue faster than normal, I don’t have a very good track record with breathing as well as regular folks, and if I get ill it can hit me in a big way. However I lead a relatively healthy and active life; yes, I do have to make adjustments to what I do, and plan activities around how much energy I need to use versus how much I want to risk not breathing … so hills, lots of stairs and arduous stuff is completely out of the window … but, on the whole, I’m not majorly affected (by my terms).
If you passed me on the street you may admittedly remark on how amazingly attractive, witty and urbane I appear (of course you’d be right on that and, in many ways, that is my real disability – being a paragon of awesome in a world that hates and fears us pretty folk) but unless you were very observant you probably wouldn’t pick up on any of my disadvantages – yes, I walk a little slower, my breathing may be laboured, I may not be lifting/carrying as much as you’d expect but, on the whole – as I’m not in a wheelchair, don’t use walking aids often, or have medical devices strapped to me – you’d probably think that I was pretty normal.
However last couple of days two things happened that, being honest, shook my foundations a little. The first was an internal thing; I was baking a cake (a German, sour-dough, friendship cake with desiccated coconut, almond and cocktail cherries – delicious in case you were wondering) which was rather thick and stiff. While stirring and mixing the ingredients I suddenly realised that I actually WASN’T stirring or mixing the ingredients … the spoon wasn’t moving. I tried very, very hard to stir it; I changed my grip on the bowl, I changed my grip on the spoon, I changed hands, etc. Pesky thing wouldn’t move. So I did the obvious thing – I called my wife and got her to stir it. Obviously … OBVIOUSLY … I knew that there was a fault somewhere along the line: the spoon wasn’t the right sort, the bowl was causing too much friction, the ingredients had morphed into super-glue, a nearby pinhole blackhole was exerting enormous gravity on the localised area of said cake. Or something. I knew … KNEW … that Carole wouldn’t be able to stir the stuff either. But she did; rather easily too.
It was just that I wasn’t able to do it myself.
Now it was rather late in the evening and I’d had a busy day at work; I’d had a busy week/month at work too. I’d had bronchitis within the last month and, within the last week, had had gastroenteritis so wasn’t at my best. But it was still just stirring a simple cake mix; I should have been able to do that, surely?
No. I couldn’t do it.
That was rather annoying. That was rather frustrating.
… the cake, though, was rather delicious (which Carole maintains was due to her stirring, of course).
Next day – yesterday – I was at a work event, getting acknowledged for my greatness (true story; me and a bunch of colleagues were at a rewards and recognition lunch for our continuous professional development in terms of qualifications and specialisms) when I was asked by a colleague if I was ok. I asked why and he said that I looked like I had been punched in the eye (or was having a stroke – he actually was very concerned). Now I was tired and sore and … well think of any negative adjective for being as weak as a weak kitten and still trying to function at 100% which is pretty normal for this type of genetic muscular condition and you’ll get the idea … but, on the whole, didn’t really feel that much different to any other day. I went into the bathroom to have a look at what he was talking about and this is what I saw:
That is called ptosis. Ptosis is a drooping or falling of the upper or lower eyelid which, as you can see by the photo, is pretty self-evident and myogenic ptosis is a known symptom in CMS (and other diseases) which basically means that there is a dysgenesis of the levator muscle … the muscle either isn’t 100% or it doesn’t function 100%.
Now as physical symptoms and ‘tells’ go for me in regards to my wonderful genetic mutations that isn’t a major one; it isn’t even particular debilitating. I know this. I’m rather intelligent so, mentally, I realise that a half closed eye doesn’t cause too much trouble (tired eye, headache sometimes, slightly weird/blurred vision) and isn’t normally noticeable when compared with using a wheelchair or obvious aids like that.
… but it annoyed me. It frustrated me. Someone had noticed that I wasn’t right and had called me on it. My gloating in February that I had done something ‘big’ by admitting my issues was completely and totally challenged by my reaction to someone realising there was something wrong when I wasn’t telling them of my own choosing.
I didn’t like it, Sam I am, I didn’t like it at all.
I still don’t like it.
It has stayed with me and I am very self conscious about it now. I’m checking my eye a lot, seeing if it is more or less open than usual … .not even knowing, really, what is usual. I look like I’ve had botox as I’m trying to keep my forehead tight so that my eyebrows are raised, so that my lid is lifted a little. It looks stupid and it is giving me a headache.
But I’m still doing it.
Because as much as I would love to say that I’d accepted this ‘thing’ of mine – as much as I’d love to be the bigger person and say that the little things don’t matter – I can’t. I haven’t and they do.
However I’m posting this blog … and especially ‘that‘ photo … because I will try to accept it better, and will try to not let the little things (or the big ones) get to me.
Because without trying you never know if you’ll like the green eggs and ham, ‘ey Sam?