Issue 128 anosmia

CONDITIONS & DISORDERS

ANOSMIA: A PERSONAL ACCOUNT OF LIVING WITHOUT A SENSE OF SMELL Ruth Sullivan Foley Artist, Self-Employed

My name is Ruth and I have anosmia. It’s been 20 years since I became aware that I was losing my sense of smell, although I’m not sure when it actually started to disappear.

I used to create elaborate explanations as to why I couldn’t smell things as strongly as before: hothouse flowers don't smell the same as flowers growing naturally in the garden; they must have changed the formula of Savlon cream; Christmas trees don't have that rich Christmassy scent because they are grown differently. You rationalise these things because the least likely reason for being unable to conjure up those scents anymore is that you’ve lost your sense of smell. How can that possibly be? But eventually, reluctantly, I arrived at the conclusion that I just couldn’t smell things as strongly as my friends could, and although that was sometimes a blessing (festival toilets became much more manageable!), it became increasingly obvious that something was very wrong.

Fear and panic started to set in. Was I to blame for this? Had my slightly hedonistic student life contributed to it?

In fact, I believe that several falls on my nose and coccyx were at least partially to blame, as well as a recurring bout of glandular fever.

Of great comfort to me when I first realised what was happening, was the memory of a long conversation with a friend who was born with anosmia and who had in no way allowed it to impede her full and varied life. However, her case was very different to mine as she had never known what it was like to smell and, therefore, never knew what she was missing, while I, on the other hand, found the loss devastating. I reassured myself that I had a rich resource - a ‘memory bank’ of smells to remind me of what I was eating or

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www.NHDmag.com October 2017 - Issue 128

experiencing; but it wasn't the same. It still brings tears to my eyes when I try to recall the smell of a Sunday roast or freshly mown grass.

A perverse aspect of anosmia is that you can walk through your day without noticing it… until someone says glibly, “Ooo, what’s that smell?” and once again, I have to explain that I can’t actually smell anything. So, whilst this condition is part of me, I am not defined by it; however, I can’t escape it. Sometimes I dream I’ve regained my sense of smell, but usually the smells are disgusting: sewage or ammonia related. Only once, I recall, did I dream of beautiful smells. I woke up and cried.

FIFTH SENSE

Last year, I read an article about Kathy Clugston (from BBC Radio Four) and her project to discover why she had no sense of smell. At the end of the piece, I saw a reference to the Fifth Sense charity and website. It was a Eureka moment. I realised that there were many more of us out there! I signed up to the newsletter and volunteered to do whatever (anything) I could to reach out to other sufferers and spread the word to the smelling world. Recently, I had the privilege of sitting in a room with over 100 Fifth Sense members, their partners and friends, to share in an amazingly moving and affirming event at the Royal Society of Medicine. To crystallize into writing all the emotions that bubbled up would take far more space than this article allows, but suffice it to say, the warmth and solidarity I felt on the day will remain with me for a long time.

And I know I’m lucky in many ways. After all, as people take great pains to remind me, if you have to lose a sense it’s probably the best one to lose. (Thank you kind folk, but this is not - I repeat NOT - a comfort.) It is one of the most evocative of senses: a whiff of coffee, your favourite perfume or a certain shampoo can take you back to one of a million different memories.

But if you’ve lost that…? And imagine what it’s like if you can’t smell your partner, your cooking, your baby. Smells can give you a subliminal awareness of the threat or danger too. Can you ever trust your emotions?

ENHANCING TASTE THROUGH FLAVOURS

The scents of your environment give you an immediate sense of place. One of my strongest childhood memories is of returning every few weeks from boarding school and opening the front door to be hit by the delicious aroma of my mum’s sausage hotpot. It signified home to me.

Hunger and appetite are very different concepts for those with anosmia; you sometimes have to remind yourself to eat, as you don’t respond to the triggers that smells give you.

I've read that some people who have also lost their sense of taste have developed anorexia - they simply don't experience any physical incentives to eat and the eating process has lost all pleasure and fulfilment. I had a scare a few years ago when it seemed that the bitterness of everything I ate or drank was vastly augmented to the detriment of other tastes. It was most unpleasant and I worried that I would have had to force myself to eat from then on. Fortunately, things settled down and I'm lucky to have retained my sense of taste, although in a slightly diminished form.

Smells contribute so much to our ability to taste, not only through the nose but via the back of the throat, as chewing releases flavours that travel directly up to the olfactory receptors.

This means that those with anosmia miss out on a huge range of taste and over the years, I’ve found myself seeking stronger flavours, eating and drinking things I wouldn’t have touched before (such as liquorice and horseradish) and I add pepper, Worcestershire sauce and mustard to pretty much everything. But even so, I was getting bored with my food, so a few months

ago, in a concerted effort to improve my eating experience, I began experimenting. I’m now discovering a whole world of flavours out there.

My personal new discoveries include adding lemon juice to green vegetables, which can vastly improve a meal, while miso paste and bouillon make an excellent addition to casseroles. Fresh herbs bring out flavours in salads and sauces, while adding colour and texture, and a spoonful of pesto sauce with some balsamic vinegar really adds to the flavours of roasted vegetables.

Lemon juice and olive oil mixed with a little Dijon mustard makes a simple yet delicious salad dressing and, of course, sea salt and ground pepper liven up just about everything.

None of these will come as a surprise to experienced cooks or nutritionists, but they are certainly making my culinary efforts much more enjoyable.

I’m also learning the benefits of eating mindfully - trying to focus on the texture, heat, spice and flavour of each mouthful and ignoring all other distractions such as TV and social media. Eating out with friends is still a wonderful experience, but I think it's important to give extra attention to the food to ensure the tastes are fully appreciated. I’m always discovering new foods and taste sensations; the main thing is to keep seeking out new tastes and textures and try not to get sucked into the habit of grabbing a quick bite to eat when I’m between appointments.

One of the most frustrating things about living without a sense of smell is how rarely ‘normal’ people - or normosmics - appreciate having the sense. People are far more likely to complain about a bad smell than point out a good one. But please, PLEASE, relish it. You will miss it if it’s gone. www.NHDmag.com October 2017 - Issue 128

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