Smelling Drama

So it's now been over a year since I got the news that my surgery had been unsuccessful and that was it; I was never going to able to smell again. I remember this because that was also the day before I decided that I was going to get my nose pierced (it might as well serve some decorative function on my face it wasn't going to prove a useful one). I'm now at drama school and my nose piercing has healed up as I've had to removed it for classes; yet my anosmia seems to be more present than ever as a lot of our training concentrates on the senses. "You must breathe in the flowers" to give you the impulse to do your vocal warm up, "you should remember a smell that means something to you" to form an emotional connected, "you need to know what the room smells like" to really connect with it.

On one hand, I'm really angry about this. And I HATE that I am; but no one else can be for me. This time last year I was SO excited that I was finally going to be able smell Christmas: the tree, the food, the mulled wine... Maybe that's why the visual/audio elements of Christmas means so much to me? Going to see the lights in London and the window displays, the John Lewis advert, the music and our always wonderfully mismatched and overloaded tree at home.

It has recently been suggested that I have developed a social anxiety issue because of my lack of a sense of smell (which is not surprising as 80% of anosmics also suffer from depression). I am needy and require constant validation of affection because I cannot form connections on a subconscious level due to a lack of being to smell pheromones or remember or know people apart from what they look or sound like. And I'm trying so hard, but I still feel so alone and so isolated. Everyone here is so lovely and they remember it so well, but I really don't want them to feel like it's an issue and they can't mention smells around me. But also, no, I really cannot smell how awful your fridge is, and it's not 'weird' or 'strange'. Please don't feel sorry for me, please get angry for me. Get angry that you maybe didn't know that anosmia existed, or that you knew how much of an issue it really is for people... I'm sorry, I know it's a really weird in-between place. 

It may well be because I'm no longer in Norwich and stand no chance of ever getting another smell test again with Mr Philpott. I don't even get to hope anymore that I'm going to get it fixed. 

On the other hand, I just really wanted to be able to smell Christmas.

The Great British Scent Off

I am a HUGE fan of The Great British Bake Off. I seriously don't think I could ever possibly love a show more than I do this one. For those of my readers who live outside the UK, it's a competitive baking programme, set in a tent in the countryside with lots of pastel colours and bunting and we all take it very seriously as a nation. So seriously in fact, that when it looked like one of the contestants Baked Alaska pudding was sabotaged by someone else taking it out the freezer, there was a national outcry. Twitter went crazy, hashtags were trending demanding justice for the bloke who had been sent home because he threw his melted creation in the bin because he didn't want to bring it before the judges in its puddled state.

(I have an anosmic point I swear)

Then it turned out that the woman whom we had all seen take his creation out of the freezer to make room for her own, had dropped out of the show due to illness. So that was what justice felt like! This WI witch had got all that she deserved was the popular opinion, and did this mean that we could bring the poor other bloke back? I'm not going to lie, I had a small moment of glee, but we all love the underdog, don't we? Then I discovered what her illness actually was. She'd fallen over in a restaurant and hit her head and lost her sense of taste and smell. 

(I told you)

Now, as upset as I was about Baked Alaska-gate, I would never wish anosmia upon anyone ever. Especially someone whose love of baking was enough to get them onto a televised national competition. To then not be able to smell or taste your creations, must be absolute devastating. For my part, I became anosmic when I was far too young to be able to operate an oven and I've grown up with it. But to have been able to smell and taste perfectly fine all of your life, and then to have it taken away from you in some out of the blue accident... I cannot even begin to imagine. However, I also saw that there was some upside to this scenario. The Great British Bake Off is broadcast on prime time television, on the BBC. Surely they would have to announce why a contestant had suddenly left and what had happened to her and how awful it was and what it was called and it would raise awareness what an impact anosmia has one people? Surely?

No.

I was furious. They simply said it was due to illness, and on the spin off show a few days later where the poor woman was invited for an interview, again, nothing. I had sent emails and tweets to the programme, the producers, the BBC, asking them - no begging them - to mention anosmia and how awful it was and they just... nothing. If she had gone blind or deaf or been horribly burnt, then it would have made the headlines, it would have made national news and people would be talking about it all over the country. But if you lose your sense of smell, you get a small article written about you on their website and it's not even spoken about to your face. And the poor dear looked terrified, you could obviously tell that something awful had happened to her.  This is a horrific case and point about how bad the awareness of this disability is and it just makes me so angry.

If anyone is interested, here is the article: http://www.theguardian.com/tv-and-radio/2014/aug/28/diana-beard-quit-bake-off-smell-taste

Home alone

For the first time in my life, I have been left alone and in charge of an actual proper house for two weeks. I like to think that being a responsible 'grown up' isn't something that I'm new too, having lived away from my parents for most of four years, but I've generally lived with people. Being by myself really doesn't bother me, and I've actually quite enjoyed the freedom of having my own place; it's reassuring to know that I could manage my own flat in London somewhere in the not so distant future. However, it has made me more aware than usual of my anosmia. I think living alone when you don't have a sense of smell is actually pretty terrifying, especially when you've grown up with it like have, as you have no idea what stuff is supposed to smell like to know if it's okay. Normally, I would ask my housemates to smell food that was out of date (just to make sure), or I rely on their reactions if anything around the house smells bad. I've also been doing a lot of physical exercise every day (as I'm doing a stage combat course) which has meant a definite increase in showers and washing clothes, just in case. I'm suddenly very paranoid about the fact that we have a gas cooker, especially as the other day I tried to light it and nothing visible happened (it turned out that actually we'd run out of gas money, but nevermind).

A lot of things seem might seem fairly trivial to the working noses out there, and I'm sure they are to a lot of people. However, these are things that I'm constantly having to be aware of and will always have to be for the rest of my life. Which is a bit rubbish, really. I'd quite like to be able to relax when I'm cooking or opening my fridge door; or to be able to smell the flowers I bought for my little student room to cheer it up a bit. I don't mean to moan, and I'm desperately trying not to sound like I'm complaining, because I'm not. I've resigned myself to it now. As ever, I just want to raise awareness and understanding for what life is like for someone like me.

Whilst you're here, I'd also like to direct your attention in the direction of Olfaction Collective. They are aiming to use art to create awareness of anosmia, by collaborating with artists and sufferers alike, and try to make it much less of an invisible disability. A few weeks ago I met a brilliant young woman who is a design student at Central St Martins, who is doing her final piece on anosmia. She sent me a questionnaire to fill out about what my life is like with anosmia and how I would describe it, as well as some more creative tasks, that were very therapeutic to complete. I'm very excited to see the final piece and hope that it has some impact on our cause!

This one has numbers in it

I went to London today and for the first time in my life, met other anosmics. It was a bit weird really, because not having a sense of smell doesn't leave any visible mark on its sufferers, so it was fun trying to guess who was anosmic and who was moral support. It was a pretty inspiring evening, listening to other peoples experiences and how they cope with the lack of odour in their life.

I spoke to one woman who is pretty much the pioneer of smell training, which, as I've mentioned before is the process of smelling different essential oils every day in order to reawaken the olfactory nerve. I have some more information from her that I'm going to read through properly later, but the thing I found most interesting is that she recorded her findings, so she could make a chart of her progress (or lack of). I think that this is something that I might start doing as it might make the whole thing seem more productive rather than disheartening. I know that my last blog post was pretty sad and angry, but now I've had a bit more time to come to terms with it, I think I'm ready to start being proactive about it again.

There was another woman who had lost her sense of smell in an ice skating accident; shed fallen on her backside and then the back of her head. Her partner assumed that it was rapid movement that had been the trigger; an MRI scan proved that it was in fact nerve damage. Another lady described herself as 'in remission'. Her sense of smell had gradually faded and now it was gradual coming back. She didn't want to be too excited about it however, as she said that she wasn't sure if it could just go again. Also, she didn't want to feel like she was being unsupportive of other anosmics.

This last point kind of struck a chord with me, and it's s pretty big and important one. You don't have to be a sufferer of anosmia personally to support those who are. My parents have been a great help and positive influence in my personal struggle and neither of them have it. This is the attitude that I would like to change. Something that came up quite a lot over the course of the evening was the fact that if it was a disability that could be seen, then there would be a lot more sympathy and a lot more being done about it. Raising awareness of anosmia is a real challenge, because the people that have it just look like everybody else. They don't have hearing aids, or dark glasses, or walk with a limp. Perhaps if you were to cut off all our noses (because why not? They don't do anything for us anymore) then we would have the sympathy and the research that we deserve. Here are some statistics from a surgery conducted in December 2013;

There are 3.25 million anosmics in the UK.

60% of anosmics feel alone or isolated because of their disability
45% suffer from depression
55% have difficulty with relationships with family/friends/partners
94% no longer appreciate food

How is this okay?

Please, spread the word. Just bring anosmia up one day as a fun discussion to have with your friends and family. Think about the impact not having a sense of smell would have on your life. Spend a day with a clothes peg on your nose to understand what we go through on a daily business. Don't remember people or places. Eat cardboard. Accidentally drink gone off milk. Anosmia isn't even in the Microsoft dictionary. Get angry, get upset, get confused. Just whatever you do, please do not write this off as a minor thing that some people are vaguely complaining about. Anosmia is a condition and a disability the same way that anything else you can think of is. I'm sorry that you haven't been made aware of it from an early age like you were other things, but believe me, I am too am very aware of how inexperienced the medial profession are when it comes to this. I just don't understand how can you ignore something that, despite being an issue within itself, is such a large trigger for so many other recognised problems.