The (Lost) Smell of Pleasure

evening sky, 6/1/12

I'm at the first year anniversary of losing my sense of smell.  It'll be good to be past some of the difficult firsts:  Thanksgiving, spring scents, summer harvest, winter without enjoying the olfactory pleasures of a woodfire or baking bread.  My weight has stabilized.  I learned one can eat food whether or not one likes the taste.  But I miss enjoying it, and I imagine I always will

When you have a peculiar experience, it's common to notice evidence and reminders everywhere.  I've become acutely aware of how much we talk about smell and taste in daily life, even in our slang: "sweet!" and "that stinks".  And I always loved smell and the memories it instantly evoked.  One of the hardest parts of this year was losing my father, and not being able to recall him through the scent of his belongings.  After my mother died, even years later, I could bring her back in the most vivid way just by going into her closet and inhaling the scent of her bathrobe.  I have my father's cedar chest, and it saddens me that it is now just a visual piece. 

There is no describing the paths scent carries us on.  It's hard enough to describe a smell.  Try it.  Often scents are articulated by the memories associated with them--fireworks smell like summer, the 4th of July; pine like Christmas and the forest we walked.

smells like:  nothing.

Luca Turin, a perfumer and the controversial subject of Chandler Burr's book "The Emperor of Scent", is an exception.  In his classic "Perfumes:  A-Z" (with coauthor Tania Sanchez) he is able to evoke complex imagery with his descriptions; still, they generally refer to a mood, or another smell.  Both books are currently buried in the stacks at my library, but a rough Turin paraphrase might be his description of a perfume as "reminiscent of an apple in the sun cut with a steel blade."  When I first lost my ability to smell, I devoured both of these books greedily.  As a supersmeller prior to anosmia,  I never liked perfume-- my nose plowed right past whatever they were supposed to offer and was overwhelmed with chemicals.  But after scent was gone, books like these were olfactory porn.  I was a torch-carrying separated lover reading old letters and staring at photographs.

With the passage of time, there is the robbery of memory.  Now it's harder to recall the scent of an apple or of a blade, and what's left is a ghost of impression, drifting.  There is a very real sense of loss of pleasure.  If you're familiar with learning theory, you may have heard of primary reinforcers.  There aren't many.  Food, sex, sleep, satiation of thirst.  Always first food is mentioned.  Without smell, food becomes more of a secondary reinforcer.  It staves off discomfort, but it doesn't give pleasure.

how did that guy know about the nose? (A+gallery's photo)

In my life, I have been through harder immediate struggles.  In my work, I see larger tragedies every day.  But this has been a loss for me, and it helps to acknowledge it, especially at Big Times like the anniversary date.  "Get the wound out of the body and onto the page", says author Marjorie Sandor; and she's right. It helps.  Three things that have also really helped:  talking to other persons with smell loss/distortion on web support sites, having friends and family that have tried to hear and understand what it means, and artist Wolf Nkole Helzle's wonderful community of world photo diarists.  The latter has helped me learn to appreciate the visual world, never previously my strong suit.  Thanks to Wolf and his project, I now carry a camera with me everyday and look to find something in the visual world that leaves the sort of mark scent use to leave on me.  Since olfaction serves as a mental marker for events and emotions, it helps to have visual cues to tie my these to places and dates.

Thanks for bearing witness.  Suffering decreases when we are heard and seen; that's what my work is all about.

Jana
Today's video:  it just made me smile.

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:
life-of-non-scents-anosmia.html
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?
Jana

A poet, a hunger, and life goes on...

 Went to see Brian Turner, Poet Laureate of New Zealand, tonight at the OSU library.  It is so good to live in a college town.  It was interesting, and sort of sad, to observe that 3/4s of the audience was grey-headed.  Poor old poetry-- competing with the World Series, and CSI, and Friday night bars.  But what a treat for those grey haired or getting there that did show up.  Turner was described in the PR as funny and unsentimental, a helpful reassurance for poetically worried sorts.  He writes about rugby, nature and our place in it, and the Human Condition.  He's delightful: unassuming, straightforward, and of course articulate in a very Kiwi mumble-y way.  Can't think of a better way to spend a Friday night.

I'm a would-be poet.  I ran a web group of poetry games, and used to have a weird hobby of making strangers write poetry for me.  I still have notebooks full of poetry by waitresses, gamblers, shoe-shiners, Welsh firemen.  I love the written word.  I don't have a lot of truck with flowery prose, but that grab-you-by-the-gut stuff--  oh, the beauty of economy in language!  Turner is good at that.  My favorites of the night were his short pieces, in which a short story was taking place in three sentences.

dreaming of food

I haven't written much poetry in the last few years.  Not sure why, but I tell people my muse done fled. Of course, after listening to a poet, I get inspired.  Maybe that muse will peek back in.   An audience member asked Turner how he knew if any of his poetry was any good.  I liked his answer: "I don't.  But I can't help writing it" (or something to that effect).  I think creativity is like that.  We put out, and we hope it resonates with someone, but even if it doesn't, it feels good to our soul.

felted daemon, 10/11

I got a call tonight from an old friend, one of my poetry conspirators back in the day.  He asked how I was, and I said "Not so bad considering".   He didn't know exactly what was under consideration. I forgot we hadn't talked in months, since before smell fled me and then Bad Smell moved in.  I told him the long story: how everything I could smell, after four months of no smell, smelled rotten.  Like nearly everyone I've told this story to he'd never heard of anosmia or parosmia.  I've acquired a whole new vocabulary this season. Stephen knows a few things about me, and he knows I loved food and olfaction.  He expressed deep sorrow for my loss, and I appreciated it, since this particular one doesn't strike most people as particularly interesting.  But I get reminded of it often-- like, for instance, tonight.  You can't listen to much poetry without hearing something about smell, and its triggers of memory and wonder. Stephen asked if I'd noticed any compensation in my senses since smell fled.  I remarked sarcastically that I can now bend spoons with my mind.  Stephen reminded me that I probably won't become a super-hero, and wondered if any of the other four senses were brighter.  I said I had been hoping that I would at least get a heightened visual acuity, but so far, no good.  Smell was it for me, sense-wise.  I've never been much of a visual person. I get lost all the time.  Touch is good; who doesn't like it?  But smell was my number one Four-D sense.  Hearing-- well, ok, I love that.  Sometimes it is 3D, mostly with nature sounds or music.  I'm slightly synesthesiac.  When I hear voices, I often have a textural association.  But smell has always, always been at least 3D for me.  And without it, the world seems awfully flat.

I had a visit from an old friend and her family a couple of months ago.  They'd moved away four years ago, and I'd not seen them in a long, long time.  They didn't know about the anosmia.  I hadn't seen their boy, now eight, since then. The dad reintroduced me to him, saying, "Do you remember Jana?  She always used to smell your head when you were little."  I teared up right away, even while reassuring him he didn't need to worry about that now.  He'd been the youngest in our circle of friend's children, and I do, or rather did, love the smell of a baby's head.

The pear I really want to be eating

Sometimes now I go a day or two without thinking so strongly of what I miss.  I do think I have learned a few things about loss and grief and acceptance.  But I miss smell.  And tonight, writing this, I am thinking mostly about my hungry belly.  I came home from work peckish, and could find little I wanted.  I came home from the poetry reading ravenous, and could find nothing tolerable. The parosmia puts most foods off-limits. The upside:  I've lost my "kummerspeck"-- a great German word that translates as "grief bacon", and means the weight you gain after a loss.  I gained 15 pounds following a couple of significant losses a few years ago.  I now weigh less than my driver's license record of a few years ago.  On the other hand, I'd take back the pounds to be able to enjoy a delicious meal of fall's bounty.  But there you go.  We don't get to choose our cards, as they say, only how we play them.  I am trying to learn grace in the game.  It's a slow go some days.

Back when I cooked food, and liked it, and was the poetrix for the word game group, we had an assignment to write a recipe into a poem.  Click here to read my Gumbo recipe on the wonderful Very Bad Poetry website.   It's bad poetry, but good gumbo.

Off to dream of eating something satisfying...
Jana

Back in the Saddle Again

Just returned from a wonderful visit to Wales and England.  It was a true vacation---few to no responsibilities, and gone long enough to settle down and Just Be.

I love my job, but we all need time to be off duty and refresh our perspective.  This trip was a gift from my sister and her husband; my job was to show up and enjoy.  What a gift that was.

We spent our first two days in a village a couple of hours north of London, where the average house was 400 years old and the streets resembled alleys.  Weather and company were sunny and warm.

Time in Wales was rhythmic and slow in the best sense of the world.  We stayed fairly close to the family home as to be available for the gracious meals of the matriarch and the zingy one-liners of the patriarch.  Yet each day we saw amazing places-- castles and gardens and stone-age settlements.  Day one was a pilgrimage to Dylan Thomas's writing studio and boathouse on the south coast.  The walk is punctuated with poetry and inspiring vistas.  I collected beach glass that I've convinced myself are from ale and whiskey bottles Thomas pitched from his writing perch on the cliff above.

London was hustlebustle in comparison, and the smells, or rather The Smell, overwhelming at first.  My anosmia transmogrified into parosmia just a few days before my trip.  I now get one smell and it's horrific:  think offal dipped in toxic waste then burned.  It's triggered by such seemingly unrelated scents as coffee, soap, and salsa.  Also perfume, garbage, fuel and just about every ten feet of an urban environment.  I used all those skills I preach about here to cope-- acceptance, targeted refocus, mental math-- and it worked pretty well most of the time.   Eating was the hardest part, especially in restaurants where every pound paid was a gamble.  I found fish and chips tolerable and ate more this week than I've had in 10 years.  To your left is a sample of what I couldn't eat, so merely lusted after.

Tate Modern Art Musuem provided good targeted refocus and I especially enjoyed the Dadaist and Surrealist works.  They had a nice room of Rothkos for soothing contemplation.  Other highlights:  walking along the Thames in the evening before theater, watching a well-acted play, wandering in the London library, and a great meetup with a writer for lunch.

Coming from a small town to a metropolis that size means lots of people watching.  While walking in the city, I decided to experiment with eye contact.  In most urban environments that's the province of the aggressive or insane, so percentage of return was low.  Whether the person I passed was a child, elderly, rich business person or homeless looking, I looked into their eyes.  If they looked back, I usually smiled.   My thought was:  Each of you is someone's child, who was loved or deserved to have been.  It was a powerful experience.  No one shouted or glared at me; many smiled in such an open way it was almost heartbreaking.  That happened more with the poor/homeless than the business people.

In the past months I have been thinking a lot of the importance of community.   And despite it's virtual prevalence and all our connections (Facebook, emails) we are more isolated than ever.  In Llandeilo, Wales, population less than 2000, at least four pubs have shuttered their doors since my visit ten years ago.  More than a bar, pubs are the UK's town halls and churches, where business is conducted, families connect, problems identified and resolved.  Now some 50 pubs a week are closing throughout the UK.  Some have histories going back hundreds of years.

In the US, it's our libraries and independent bookstores and diners that are going away. Places where we used to while away some time, breathe a little, meet with friends.  Single-screen movie theaters are a thing of the past, but the multiplexes aren't doing that great either.  Live music events don't attract like they used to; people are content to buy (or steal) their music off of the net.  Old venues fold and with them a piece of our history and the exoskeleton of our community.

This week's homework:  Get out a little.  You don't need to cross the pond to find connection and renewal.  Take some time to support a local institution you want to see survive.  Ask a few friends to join you, and remember how nice it is to see familiar faces.

Meanwhile, if you need to relax, here's a Welsh lullaby: