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Sporadic photos and notes from a Psyche-midwife, cheerleader, anthropologist--aka clinical social worker in therapy practice. Photos are usually mine except for those of historical events/famous people. Music relevant to the daily topic is often included in a web video embedded below the blog. Click on highlighted links in the copy to get to source or supplemental material. For contact information, see my website @ janasvoboda.com or click on the button to the right below. Join in the conversation.

Thursday, February 23, 2012

Dead Air: Anosmiac Errata

graphic by Sister Anosmiac Jessebelle Lemonade
Today, February 23rd, is National Anosmia Awareness Day.  

A year ago, I'd never heard of anosmia, the clinical term for lack of a sense of smell.  I wish that were still true. In June following a virus and knock on the block, I became a textbook case.  Previous blogs talked some about the disorder and its impact:
The Less Nosy Life
A poet, a hunger, and life goes on

I never imagined how the loss of this sense would affect my life.  That helps (some) with being patient with how difficult it is for others to understand the profound and entangled grief, the daily complications.  I don't know if an Awareness Day will help you walk a mile in my shoes, or care how they fit, but maybe you'll get a block or two in.
This Schnoz-- it was made for smellin'!

Here's a few things I've missed this year:

The smell of the seasons-- wet pine in rainy fall, a campfire, Christmas. The briny ocean breeze.  The sharp, sulphur scent of the 4th of July.  Now, the beginnings of Spring with daphne beginning to blossom.  

My family as I hugged them, especially those that live far away and I see so rarely.  My father's cologne on his clothes, after he died.

Every day scents and the memories they evoke:  the dust of books, the sharp of cheese, the incense of wine.  My sweethearts' pillow.  So many, too many pleasures now gone.

And the biggie: Food.   FOOD, GLORIOUS FOOD!

I am reminded of this loss a minimum of three times a day.  Food is the centerpiece of  nearly every celebration, most socializing, each holiday.  And I either can't taste it, or it tastes bad.  I loved food, such that I was getting  significantly "fluffy" the last few years.  I have dozens of cookbooks I used to read just for fun; I loved the farmer's market, new restaraunts, reading and talking about food.  And I miss it so, so much.

I learned a few years ago to eat slow and to take real pleasure from tastes. It helped me lose 25 pounds in my first ever attempt at weight loss.  No diet, just appreciating what I ate and where it came from and being mindful.  I put some back on due mostly to a job that requires me to sit (as still as a fidgety person can) in a chair all day, and in misguided self-comforting after some losses a couple years ago.  But I kept the habit of truly enjoying what I ate.

In the first few weeks of losing my sense of smell I lost 10 pounds, because nothing tasted.  I changed my habits to enjoying texture and stopped losing.

Then in the fall, I developed parosmia (distorted smell).  My brain tried to rewire, and amplified or distorted the apparently one molecule I could taste.   Suddenly, anything that smelled, smelled the same-- and horrifying.  Like burned hair dipped in toxic waste.  I became food adverse and lost 25 pounds in short order.  I was afraid to go to friend's homes because they might offer or be cooking something that would literally make me sick.  Most restaurants were out too.  I ate apples and almonds only for weeks and weeks, because they were, if not good, at least predictable and unoffensive.

I'm still not skinny.  But please don't tell me how much you wish you could have this disorder so you could lose weight.  I would trade my new sizes-smaller jeans in a heartbeat to be able to eat and enjoy a cookie, or even just a regular meal.  Most work days I 'm still on apples and almonds.   For dinner, if someone cooks, I'll eat it-- but don't ask me what I want to eat, as it mostly doesn't matter.  I have learned that I can eat food that doesn't taste good at all to me.  I don't like it, but I can eat it. 

There are some foods that just send me through the roof.  Chocolate, butter, nuts that have been roasted, celery and cilantro.  The smells alone will nauseate me and ruin my appetite.  Oh, for the pleasure of fresh baked bread dripping with butter-- but although I remember the pleasure of it, I can no longer remember the smell, and what occurs when I smell melted butter is nothing close to good.

Memories are another thing slip-sliding away.  The olfactory system links straight in to the limbic one, that part of our brain so responsible for emotion and memory.  You know this, if you can smell--  one hit of cinnamon and you may be back at Grandma's; hot asphalt may spin you to summers on the midway at the fair.  I used to be able to call up scents and the memory would follow.  But after not smelling lilacs for a couple of seasons, I can no longer recollect them-- or some of the memories that were hard-wired linked to them.

Depression is common with loss of smell.  In some cases that's because of what caused the loss in the first place--  Parkinson's or other degenerative neurological diseases.  But studies show it's prevalent in persons with acquired anosmia.  Whether that's biological or psychological is up for grabs.  But I felt it, and talked to many other anosmiacs who were there too.  Anxiety is pretty common as well.  I've left the gas burner on, burned food, hugged someone AS they were smoking a cigarette I didn't see.  I don't know if I smell bad-- if I had a rotten tooth, would I know it?  Is it time to wash that sweater?  As a former super-smeller, that just didn't happen before.

And because the few things I can detect smell EXACTLY the same, I don't know what's happening when I walk out of my office late at night and am assaulted by fumes that smell of burnt caramel toxic waste.  Is the building's burning down, a cigarette-smoking transient in the hallway, or is it just that someone sprayed the Glade in the bathroom?  Maybe it's someone baking brownies in the basement apartment.  This is disconcerting.

There are daily inconveniences, especially for the preoccupied/ADHD mind. I can't tell by sniffing if I remembered to put on my deodorant.  I have to have my sweetheart smell the milk to see if it's gone off, or the laundry I forgot in the washer to see if it's soured.  When I cook, I have no idea if it tastes good or needs a little more or less of this or that spice.

I see shades of recovery.  Learning to eat again and overcoming the body's natural opposition to eating things that taste bad was a big one.  My nutrition should be improving and my weight stabilizing now.  The parosmia has mutated--or my brain, through exposure, has calmed down and no longer sees The Smell as a huge threat.  I don't spend most days feeling like I'll throw up.  I can go in restaurants now and tolerate the produce and cleaning products section in the grocery if I dart in and out and take a big breath first.

Please sir, may I have some more?

But there is a big chunk of my life that is gone.  I am really looking forward to getting past the firsts-- the first birthday where I can't enjoy cake, the first Spring where I can't smell the garden.  I let it the garden go last year; this year I will try again and focus on color and shape.  I'm nervous about this weekend, when I'll be seeing my foodie friend Maria at a music festival.  The last time we met, she and two other Italian foodies and I spent hours in restaurants with five course meals, during which we talked about the best meals we'd made or eaten.  It was one of the most pleasurable weekends of my life.  Food is a place we connect, and a way we nurture ourselves and others.  Pounds be damned, I miss that mode of love.

If you smell, take some time today and treasure it.  Read up a little-- the memoir A Season of Taste, documentary of Luca Turin The Emperor of Scent, Corvallis's own Keith Scribner's novel The Oregon Experiment all talk about the richness of smell and the devastation of its loss.

If you know someone who's lost olfaction, don't ask them if they can smell THIS big smell (just like you don't ask blind people if surely they can't see THAT building).  Don't tell them they are making a big deal of it, or that it must be great to not smell farts and poo and garbage.  Don't keep offering them the same food they can't bear if they have parosmia, or tell them you wish you could lose weight like that if they have or tease them if they gain (people without the distortion tend to gain weight, since nothing is satisfying like it used to be).  Don't center all your plans and celebrations with them around food-- take them to a museum, or a play, or a walk. 

And my personal request, just for now, just for while I adjust-- don't rave too much about how great dinner tastes or smells.  Just for a little while longer.  It's salt (smoked chardonny salt, fresh fleur del mar)-- in the wounds.

Thanks for indulging me today.  Take a deep sniff for me, wouldya?


kathiekp said...

Thank you for this. Not being able to smell the lilacs was the first way I knew it was gone. It's been about 5 years now. You write so beautifully about the impact. When I eat I have to enjoy by appearance/colors, temperature, texture, salty, sweet, tangy and memory of the idea of the aroma. But so many other smells are missing that I don't even remember or know what it would be like to be able to go through a day with the ability to smell.

Hundreds of Hundreds said...

Dear Jana, I also lost my sense of smell a year ago this month. Your article captures so wonderfully the frustration and sadness that hangs over me every day. I will share with my friends and family, and hope they take your suggestions to heart. I wish you the best. Jill

Anonymous said...

i just wish I could fix it for you. i love you. -marla

Anonymous said...

Hi Jana, I'm Marla's friend and I love your blog. I had never heard the term anosmia, but I have practiced cooking for a kid without the sense of smell every quite a bit over the years.

My now 17-year-old niece has cystic fibrosis and lost her sense of smell because of the heavy medications that she's been on all her life (at least that's what I've understood). Her situation is different from yours in that there is no bad smell either (and that she does not remember smelling) - but it took me while to understand & learn to get the textures right (I presume they are different for every individual - she cannot stand fruit or vegetables, raw or cooked, so vitamins come from Pediasure)... however last time she spent a weekend with us, I was told I make the best-ever pasta & ground beef mixture - she ate it all weekend :) It has taken me 10 years to master the right kind of cooking (I obviously do not practice regularly - only when she's visiting).

I wanted to share this with you, since your loss took place relatively recently. I hope that you will find many textures like almonds and apples to make your culinary experiences meaningful and more bearable. My niece lives primarily on a handful of foods but she has managed to identify those she really enjoys (I do not know another teenager with as much laughter and joy de vivre as she has). And I sincerely wish you the same - finding textures that will let the joy back in. I am not belittling your loss - rather wishing to provide some hope that it may not feel as big of a loss forever.
Hugs Paivi

Anonymous said...

Dear Jana,

After a bad cold I lost my taste and smell. In the beginning It was the taste I noticed that something was wrong. Everything tasted different and the same. I had a milder case because nothing smelled bad at least, just no taste.

Then I did a search on the net and I found that most people with these symptoms were anosmic so I spayed my cologne and nothing, it smelled like alcohol, tried another the same. I had parosmia, no bad smells but distorted smells.

A year later things improved, two years later much better, The nerves regenerated to a certain degree. I am 80% now. Be patient things might change, it might take longer but from my experience things improved.

I wish you patience and hope that one day you will be surprised that your body will start healing your olfactory system. I certainly hope so.

Jana Svoboda, LCSW said...

Thanks, each of you, for your supportive comments. Jill, Kathie, Paivi, and Alex: I know you get it, and I wish you didn't.
I do feel we'll all more than survive this, and that it's important to acknowledge our grief and have it be heard and not belittled or seen as indulgent by those who've not experienced the multiplicities of loss involved. That sort of compassion has been a great healer for me.