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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.

Wednesday, July 13, 2016

A Life of Non-Sense, Update

It's my five year anosmiversary.
Anosmia: lack of sense of smell.
A half decade ago, my nose up and left me, after a lifetime of exemplary service.  Until then I'd been a smellaholic, a supersmeller.  Smell connected me to place, to person, to memory more than any of my other senses.   And then it was gone, practically overnight.

For 6 months, I smelled nothing, and the world turned colorless and dull.  And a bit dangerous.  I burned myself giving a surprise hug to someone smoking a cigarette.  A season before that I would have smelled that stogie a block away.  I nearly asphyxiated my family a few dozen times when the stove pilot light didn't ignite. I licked bleach from a spray bottle bottle because I was sure it was water, not realizing I was wrong until my tongue blistered.  I burned numerous meals and ruined others because I had always cooked by smell and taste. Like the pie I made with unripened gooseberries, or the tumeric cookies (I thought it was cinnamon in the dim fall light).  I

For six months, food was a chore and a bore.  Everything tasted like variations on paper:  crisp paper,
dry paper, wet paper, soft paper.  The first food I enjoyed even slightly was a gift from Tony,my brother-inlaw.  Knowing that at least textures gave me some sensation, and that I had some very rudimentary taste (we don't lose our taste buds, so salty/sweet/bitter/spicy/unami are still there, just underwhelmed by the loss of flavor/odor), he made me a salad of chewy wheat berries, sweet dried cherries, crunchy nuts, and dressed with lime and hot peppers.  I was in heaven.

Then, six months into a world of nothing olfactory, I smelled a smell.  Bacon!  I was thrilled.  Except we are vegetarian, and there was no bacon.  And there was, apparently, no bacon smell.  I had my first smell hallucination.  I'd read about that, but it was entirely different to experience.  It gave me a a new respect for hallucinations, which I'd assumed would be more like dreams-- weirdly different from our usual sensed reality.  In my experience, they were no different that regular experiences.  I wasn't IMAGINING I was smelling bacon, as in remembering or thinking about the smell-- I smelled it.  A few weeks later I smelled incense.  I believed people when they said there was no smell there, but I was thrilled, after a half a year of absolutely no smells at all.  A new phase.

There isn't any way to describe the sudden loss of smell such that those who haven't experienced it will truly grasp.  Smell links us profoundly to the world.  For those born without it, it's a hardship that's minor and sometimes major, but it's the way of the (their) world.  For those who had it, it's as if you are instantly plunged into an alternate, very flat universe.  Memories fade.  Sexuality changes.  The gustitorial glue of the world disintegrates.

A few weeks after the bacon incident, I went to my sister's for a party.  I had come to loathe food centered events, and by gosh nearly all events are.  I was jealous and bitter about people raving about the fantastic smells and flavors when all I was getting was the paper.  I had a glass of wine, just to be social.  In the past wine had been a kaleidoscope of complexities.  After I lost my sense of smell, it was weird tasting water.  That night it was foul tasting water.  Everyone was going on about how good it was, but mine didn't taste good at all.  It tasted rotten.  I thought it must have gone very bad.  A few days later, I began to prepare a peanut butter sandwich, but after opening the jar became so nauseated I had to leave the room.

For the next several months, I could smell quite a few things.  Unfortunately, they all smelled the same:  rotten meat soaked in chemicals and covered with treacle.  This was a new phase:  cacosmia.  Literally:  shit smell.  It was awful.  I couldn't go in a restaurant or grocery store.  Walking in a public place was a horror: perfumes, gas fumes, coffee and cigarettes sent me retching.  One vivid day:  I walked through a duty free shop to get from point A to B in an international airport.  I ended up in the toilet, trying not to vomit, sobbing.

There were the worst offenders:  car fumes, smoke, and chemicals of nearly any kind including cosmetics or detergents.  Peanut butter, butter, celery sent me running.  I stayed inside.  I declined invites to eat out or at others' homes.  I avoided getting up in the morning to stay clear of my sweetheart's ritual coffee brewing.

Oddly, I still couldn't smell most anything.  Not bleach, not gas or ammonia or outhouses or body odor or farts or catboxes. I still can't.  People say :  Oh aren't you lucky.  I disagree. I tell them about an anosmic acquaintance who traveled abroad to get help regaining his sense of smell, and how he cried the first time he was again able to smell his own shit.

Meanwhile, my father died, and I cried because I could not smell him as I said goodbye. I remembered smelling my mom's robe for years after she died, and what a comfort that smell was to me.  I cried because the flannel shirt I took from my father's closet would never bring me that familiar comfort.

I cried quite a lot.  Like all grief, I cried at the firsts:  the first Thanksgiving when I could not taste the food, the first Christmas I couldn't smell the tree or the nutmeg in the eggnog.  I cried when I saw an old friend and buried my head in her neck and there was nothing familiar there.  I cried about the pies I ruined and the breads I burned.  And I cried because few people would acknowledge that I was grieving something very, very important, which meant I was alone in it.

I worried a lot too.  I worried I stunk and wouldn't know it.  I worried that when I walked at night or worked late I wouldn't smell a predator lurking nearby.  I worried everything I cooked tasted as bad or dull to my family as it did to me.

During the period of intense dysnomia (olfactory distortions), I ate apples and almonds for breakfast lunch and dinner-- when I remembered to eat. They met my criteria: they didn't project that foul zombie sock scent, and they were crunchy.   I lost 36 pounds because unless others reminded me or there was a clear external cue, I forgot about food. 

This lasted for many months, interspersed with random periods of back to no smell at all. By that time, true anosmia was a welcome relief from distorted smells. 

And then, like it does, life crept into a new normalcy. Partly this was time,and partly effort.  It's socially difficult to have such a restricted diet, so I did exposure therapy to add new foods.  I would choose a food that wasn't too offensive, like a carrot.  I would remind myself that it would not taste like I expected and that was ok.  I would remind myself, over and over, that it wasn't poison and was in fact a healthy and innocent food.  And then I would eat it, over and over, until I could tolerate it.  Then I would add a new food.  Soon I was able to eat most things.  Celery, cukes and coffee were still off the list but at least I wasn't a freak at Thanksgiving with my apple and bag of almonds.

I discovered that if I concentrated on those simple tastes of sweet, salty, sour and bitter I could learn to --almost-- enjoy food.  

And I discovered that those foods that were REALLY high in sugar and salt and spicy and bitter were, at least comparatively, wonderful.  So much so that in the last five years I have regained that 36 pounds.  Maybe a few more, because I also notice that I don't have an off switch.  If there is food in front of me, I eat it.  Faster than I used to because it doesn't taste as good.  And I am always chasing the high of it tasting good.  I'm working on that one this month, simply because I am too lazy and cheap to buy a new wardrobe, and I only have so many floppy dresses and stretchy pants.  I'm going to go back to taste training camp, using mindfulness to eat slowly and really try to notice what I can get from food.  How it feels in the mouth, how it looks, it's texture and how the sweet or salty changes on different parts of the tongue.  I'll find my anosmic cookbook and follow it for a while.  And I'll start portioning again, especially at restaurants, because I know it doesn't matter (except in a negative way to my waistline) how much I eat: I won't reach that bliss point of flavor savor.

There are a few practical changes I've made:  gas detectors, timers to check food (I used to know based on what smell was coming out of the oven).  LOADS of cayenne and hot sauce on foods to remind me I am eating something.  The return of antiperspirant and extra laundry, since I can't do a reliable sniff test.  In my therapy practice, I've had to hone other sense skills to tell if a client is ill or drunk or otherwise stinky, and I'm improving.

I don't get as depressed when people wax on rhapsodically about delightful smells.  Usually I actually enjoy hearing about them.  Spring gets me, for a few weeks at least-- I miss it.  I miss the smell of rain, too, and of children's heads.  But mostly I'm used to it now.

Which, after all that, may seem like a weak way of saying it gets better.  But it does.

I have some smell back now-- maybe 10-20 percent.  The smell training kit my daughter made me has me pretty solid on vanilla, cinnamon, coffee (ugh), a few other things. I can make out smoke, and occasionally skunk on a highway (so far more of a feel in my chest and throat than a smell).  I ask for confirmation on my guess and they are getting closer.  I can sometimes smell something like perfume, distorted, on a client or a passerby,or food cooking.  It's not what it was but it works, mostly.  I haven't given up on future improvement.  But I am learning to accept what is.

Here's a takeaway. We are amazing.  We learn to adjust, to compensate, even to correct at times.
Takeaway two: don't belittle a situation you cannot understand.  Treat loss as loss and don't tell people "it could be worse." In the case of anosmia, we know that, and we don't need shame on top of our grief.  Try to accommodate when it is early in.  Don't test us by shoving something stinky in our face, and restrain yourself a little about what we are missing.  After a while, we won't need the latter.  Except, maybe, in Spring.  Spring is hard.

Love and the dream of the scent of rising bread and a fresh rain,


Unknown said...

i really appreciated your writing this morning...

Jana Svoboda, LCSW said...

Thank you, Nicole.

Anonymous said...

Today is my four month anosmiversary (great word by the way!). Your post made me laugh and especially cry, as I understand almost all of what you describe. Thank you for sharing. I keep hoping that it will get easier.

Jana Svoboda, LCSW said...

Anonymous, it really does get better. It's an adjustment, an invisible disability so there isn't always the support for us going through it. You learn to really hone in on taste and its nuance. I gradually add new foods all the time until my brain stops freaking out that they taste wrong-- and accept that they taste like they taste, not like they "should". I dove into photography for a couple of years, trying to replace my olfactory satisfaction with a new addiction. I was a little down when I wrote that-- not just the smelliversary but also instuctions from my doc that all the kidney stones I am stockpiling are related to those years of living on brown rice, beans, tofu, spinach and sweetpotatoes. and dark chocolate, all high oxalate foods that turn to stone in me. Apparently to avoid them I am to eat iceberg letture, white rice and booze. I was doubly cranky/sad when I wrote that.But I'm better today. Ii'm a big container, room for all the feelings. I hope your journey is shorter and sweeter but I'm a listening ear if you need to wail a while.

Jodymom said...

Thank you for posting this Jana! This is my 8th smelliversary and I really identify with all you've been through. Salt and sugar are my salvation but I am now 72 years old and in good health so I'm not going to worry about using the condiments! God bless you and....keep writing for us...it helps!

Jana Svoboda, LCSW said...

Jodymom, thanks for writing. I mentioned on another site that I was pretty low the day I wrote that, and for the most part I've adjusted well. But it was tougher than I could have imagined, and it helped me a lot to talk to others who'd been there. Stay well!

ExpoInSound said...

Still Life

They met their fate, frame by frame,

Shots were fired, stills remained.

Where empathy and hope renew,

The dark room behind door number two.

Great blog!

Jana Svoboda, LCSW said...

@ExpoInsound: good ear, great poem. Thank you.

Unknown said...

Just discovered your writings on anosmia yesterday. 16 years for me now. You write SO poignantly about it, which helps me - and likely many others - feel less alone. Fortunately my phantom smells are minimal.... but rain, you mentioned rain.... that was always one of my favorites. Your writing is a blessing and so know,and take to heart, that your loss has led to helping others like myself. BTW, your description of the Fair in the earliest piece made me laugh. I worked for the Forest Service in the 70's and met lots of OSU Forestry students, some of whom I still visit, who live in Corvallis. So I've gone a couple times, once when I could smell. Hilarious description, thanks for the laugh! The smell training does help... and EVERY ONCE IN AWHILE, well, there's a glimpse of before... coffee smelled from two rooms away, a brief gulp of mowed grass, a puff of the oils in Douglas-fir foliage when I break a branch at work... every time these things happen I think a silent, "thank you for that". All the best to you and your readers.

Jana Svoboda, LCSW said...

Dear Unknown, sorry it took me so long to find your sweet note. I haven't been writing much the last couple of years. I'm glad to hear you are getting the occasional smell. Six years in now for me, and I smelled rosemary this week and it sent me to my knees. Doug fir sounds like heaven