Living With Anosmia: A Personal Story Of Losing The Senses Of Smell And Taste

Wake up and smell the coffee. Stop and smell the roses. Oh, if only I could!

Seven years ago I caught a virus. It was nothing unusual, more like a bad cold, but toward the end of the first week I noticed I had lost the ability to smell. Completely. 100%. This is not unusual when you have a cold so I ignored it, although I do remember wondering if it could be a side effect of the steroidal nose spray I'd been using.

Two days later, I noticed I could smell and taste things a tiny bit better. A week later, I'd regained maybe 10%. A month later, nothing had changed. Since then, nothing has ever changed. Seven years later, despite all kinds of alternative remedies, including acupuncture, I'm still living with only about 10% of my ability to smell, and perhaps 30% of my ability to taste. It's been a great loss, to put it mildly.

It has not been a straightforward absence of smell. Occasionally, mysteriously, I'll catch a whiff of a smell, a ghost of one, usually some man-made chemical, but occasionally food cooking. It lasts for a fraction of a second but then it's gone. Other times I suffer from parosmia, phantom bad smells that haunt me for hours or days. (Why can not I smell phantom lavender? Why always phantom burning rubber or old compost?)

What do I miss the most? The smell of coffee and roses, of lavender, of the forest after rain, of people I love. The ability to appreciate the newborn-baby smell when my last granddaughter was born, or to enjoy the subtleties of a beautifully-prepared, herb-enhanced gourmet meal with a glass of wine.

My most surprising discoveries? First, that almost no one cares. I've lost the greater part of two of my five senses, and no one really cares. Certainly not my doctors, including a ENT, who have all basically said, "Oh, really? No, there's nothing we can do." I've discovered doctors have no interest in conditions they can not treat. (Fair enough, I suppose.)

Even friends and relatives seem almost oblivious. I have to keep reminding them, "Please do not ask me how your perfume smells or what I think of your sauce. I can not smell or taste anymore, remember? Remember how I've told you this about twenty times?" "Oh right. Sorry. I keep forgetting you can not smell or taste." Part of me gets so annoyed, imagining someone going up to a deaf person and saying, "Listen to this song – do not you love it? What? Oh, right. I forgot you can not hear. Oh, well."

Second biggest surprise? That searching for anosmia information on the Internet – that bottomless pit of information both useful and spurious – produces very little. At first I spent literally hours looking for help, for information, for personal stories from people who have been through this. I wanted to read about people who, like me, had spent most of their life with the full ability to smell and taste, then lost it suddenly. I wanted to hear their tips, to find out if they felt as angry and grief-stricken and depressed about it as I did. I found a couple of good sites, but years later, no new ones have emerged, and the old ones have not been updated. What I'm noticing is that when people first lose their senses, so to speak, they get upset and desperate, search wildly for help for a while, then after a few years simply stop posting about it. I guess there's no real point – they just have to accept it and live with it.

Third biggest surprise – still connected to the whole "No smell? No big deal" attitude of the world is that no one is trying to cure or help or fix this. A few years ago, the only reason for hope I was able to track down on the Internet was a doctor in the US who was doing a very promising study, actually bringing back some ability to smell to anosmia sufferers using some kind of asthma drug. A couple of years later, his study ended, due, I believe, to lack of money, or lack of general interest, or both.

What have been my biggest losses? There are so many. First, pleasure and enjoyment, an enhanced quality of life. The other day I woke up and knew my husband was cooking bacon and eggs. Now, for me, this used to be one of life's greatest pleasures – the combination of the aromas of coffee and bacon, and if you smelled it while camping, mingled with the scent of wood smoke and pine trees, all the better! Now I know he's cooking breakfast because I hear the coffee maker and the sound of frying, and I smell something bitter (coffee) and something burnt (bacon.) Yum.

Without a full ability to smell, I find that food, while retaining its basic tastes (sweet, sour, bitter, salty) loses all its flavour and subtlety. I compare someone eating with partial anosmia to someone listening to beautiful music with earmuffs on. They can still get a vague idea of ​​the tune, but all the beauty and nuance are lost, and so is most of the pleasure. I can still sometimes sense when someone is wearing perfume, but I can only pick up one note, a chemical smell I now think of as "perfumey" – but there's no pleasure in the smell. It's harsh and without joy.

Another huge loss – sense memories. Five years ago we moved into a log house in the country. My modest dream home. Mitigating the joy of the move was the knowledge that as wonderful it is to stand on my deck surrounded by evergreens, or to sit in our little log home, snug on a rainy evening, I smell … nothing! No fir trees, no cedar, no wild roses, no rain-washed air, nothing! I would ask visitors, "How does my house smell? Good? Can you describe it?" And in the future, if we ever move, do you know what smells will bring back the beauty and poignancy of living here? None! No smell or taste will ever remind me of living in this house. And that's so sad.

Is there an upside? Well, of course – there's always an upside. For one thing, bad smells do not bother me much. Dead skunks, cat litter, garbage – after a half-second whiff, the smell fades to nothing, and I'm fine. If anyone's ever needed to clear up after a major disaster, I'd be perfect! Also, after a recent surgery, I reflected that it was good to have a hospital stay completely unaffected by the sense of smell. No smell of antiseptic or medicine or floor polish will ever remind me of that experience. So there's that.

Another upside is that, in a strange way, having anosmia has made it easier to deal with being married to a man who has very little interest in food. When we first married, I was so disappointed that my well-honed cooking skills and love of experimenting with recipes and ethnic foods were wasted on him. As far as he was concerned, a bowl of cereal was just as good for supper as an oven-simmered casserole full of Greek lamb, pasta and vegetables. Better, in fact – none of those pesky spices and herbs. Now, we're both happy with a simple supper. Fancy restaurants? Why bother? So we save the money for other things.

I've also been surprised and impressed by my brain's ability to adapt. When I first lost most of my ability to smell and taste, I was so irritated by lifelong anosmics on the Internet claiming they enjoyed their food as much as anyone. I thought, "They just do not know what they're missing." Now I can relate. My food choices might be different now, but when I'm really hungry, and can find the right food (at this point, my favourite is anything hot and crispy – texture is so important!) I can still know the intense pleasure of eating , just in a different, simpler way. And there are now days, even weeks when I actually forget what I've lost, unlike the early months of feeling so angry and desperate to regain what was gone.

One happy discovery? A very few things still taste the same, even without smell. Barbecued steak, watermelon, fish and chips, spaghetti with meat sauce all taste remarkably similar. So I eat them a lot. Turkey with stuffing, a former favorite, not so much. (Did you know that without the ability to taste herbs, stuffing is just warm, wet bread?)

Another upside is the intense appreciation I feel for small things, like a brief whiff of a good smell. I have a tiny box in my bathroom containing a bar of scented soap. For some mysterious reason, my few remaining olfactory cells can pick up the chemicals used to create the soap's smell. Every couple of days, I'll pick up and open the box, then take a quick breath. For a millisecond I smell the warm, pleasurable and comforting aroma of vanilla and brown sugar. Then it's gone. But it's enough to make me feel good. Then there's the recent lunch with a kind and thoughtful friend who went out of her way to make me an Indian meal, full of curry and hot spices, accompanied by sweet chutney, in hopes that at least some of this kaleidoscope of flavors and tastes would come through. And some did! It was delightful!

Have I learned from this journey? Yes, I've learned a lot, especially a deep appreciation for how wonderfully we're designed (when all parts are working order,) and for the small but intense joys and pleasures all around us that we take for granted. That said, if an anosmia cure appeared tomorrow would I be interested? I can not lie – I'd be first in line! And as soon as it worked, I'd make a beeline for the nearest coffee shop. I'd just stand there and inhale and smile.