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Wednesday, March 15, 2017

More About Being Anosmic

I have never been a group activity kind of girl.


I have not ever been the type to get excited about pretty much anything that involves interaction with more than a person or two.  I joined Girl Scouts when I was young and I was really excited to get all the gear but I quickly discovered that attending the meetings was a big drag because there were a whole slew of girls there and they were squealing a lot and had too much energy, etc.  I think I went to 2 or 3 meetings and then I was out of there and on to more interesting and intellectual pursuits like reading books at the library.


One time I had a sadistic boss who thrived on gathering employees together, putting them in groups, and making them do "team-building" activities that involved moronic games in which grown up people were forced to perform like circus monkeys in order to pretend they were team players so they didn't lose their jobs.  I got called out for not being an eager participant - no big surprise there as I am incapable and unwilling to act ridiculous on command or to feign enthusiasm.  I mean, I'm pretty ridiculous on a regular basis...but on my own terms, ya know?


Knowing all of this about myself and being this way my entire life, you can then imagine my surprise when I find myself to unwittingly be part of a group that I never signed up to be involved with.

That groups is Anosmics.  People who, like me, lost (or never had) a sense of smell.

See, what smart people do when they are afflicted or affected by something is to reach out to others in the same or similar boat.  Obviously this is not something I'm very comfortable doing but I learned how essential it is years back when I was dealing my ex-husband's mental illness.

So now that I am part of this group I have joined several different communities for anosmics because it helps to know I'm not alone.

I've probably written this before but I'll risk redundancy: there is so much more to losing your ability to smell than simply not being able to smell anymore.  I wish with all my heart that it was that simple but it's not.  I'ts so not.

Most of the time I don't even want to talk about it anymore.  I thought for awhile that I would be some kind of Olfactory Crusader...

Sharon the Olfactory Crusader
flying around to testify at Congressional hearings for research funding...
to drop in on ENTs and other medical professionals to convince them to take this thing seriously and stop shrugging their overpaid shoulders and saying only "good luck" as they're showing us to the door...
to pop over to utility companies to get them to install what could be life-saving alerts in the homes of people who can't smell if there's a gas leak...
to quickly get to other anosmics to hold their hand and let them know they're not alone.

I wanted to be that.  And more.  But the truth is that I can't - at least a lot of the time - because dealing with this thing has sucked a whole lot out of me.  I'm eight years in to not being able to smell.  At some point kind of early on I figured out that I had to not "go there" which means I had to learn how not to think too long or too hard about not being able to smell anymore because if I did I was going to be swallowed alive by it.

It is a daily draining struggle.  I'd like to write about the myriad of ways not being able to smell affects those of us who can't but the idea exhausts me.  I'll just write that it's not just "I miss smelling flowers or ______".  I am no longer connected to the world I live in and that, I promise you, is not a histrionic statement*.

That's what anosmia is, that's what it does.  It cuts you off from life and that doesn't mean because I can't smell apple pie.  It means my smell memories are gone, my ability to create new ones are gone, and that's just the tip of the iceberg.  If you think that your senses are simple you need to do some research.  The loss of any is tragic in many ways and on many levels.

Truthfully nowadays I focus only on the things that make me happy or bring me some kind of pleasure (whipped cream is nice)  and when I feel myself "going there" I have to remember and do my best to refocus or take a nap.  Sometimes it works, sometimes it doesn't.  I can't worry anymore about whether the people around me understand or know what I deal with.  Those who really care have been there with me through this thing.  They know that sometimes I want to use my own fists to pound on my nose while screaming "work! work! work!".

Last night I was talking with JP about this and I told him that what I am now is kind of like a zombie.
I said it a little bit in jest but he didn't like it and tried to object but I stopped him.  This thing is mine and someone who can smell their world would never be able to understand what I meant by that.
He doesn't like to see me sad and I love him for that but what I said was really kind of true.  Zombies are what? Half alive, right?  It's sorta kinda accurate in a being cut off from life way.

This is my smell kit:


It consists of four essential oils - lemon, eucalyptus, rose, clove.  These are the four scents that are supposed to be most effective in retraining your olfactory system to learn how to smell again if you're lucky enough to still have a working olfactory system. The doctors can't tell you if you do for sure, by the way.  They can't test you and then say "Great news!  One day you'll probably get your nose back!" or conversely "Bad news.  You'll never smell again."  It's a big giant mysterious guessing game.
I'm sure there are way better explanations for how this smell kit works so you can probably Google it if you're so inclined.  I use this kit regularly.  Usually I play a game with the three bigger bottles (the little one is rose which is super expensive, that's why it's so much smaller) where I mix them up and close my eyes while sniffing them...then I see if I get them right.  Sometimes I do, sometimes I don't.
I get really excited when I get them right.  Right now it seems like they do help because I sometimes pick up scents when I'm being good and remember to smell kit.  And when I do smell something it's for like a nanosecond; it never lasts.  Or sometimes I'll walk into a room and know that it smells like something because I pick up on a change in the air...but it's as if the scent is 3,000,000 miles away, if that makes any sense.
But as minute as it is, it's progress and I'll take that.
One of the hardest things to deal with is phantom smells which are smells that are not actually happening in your immediate environment at all but that you think you're smelling.  They are your brain remembering a scent and knowing that something is amiss - that there's a disconnect somewhere.  It is a maddening thing.  Do you know when it's cold and damp out or maybe foggy and you're standing by the ocean smelling the heavily salted air?  That's what has been stuck in my head for weeks now...ever since we were down by the ocean.  My brain sent out the Salty Air Signal and it hasn't shut off for weeks.  So I'm smelling it but it's a false smell, a smell that is not actually happening but is instead emanating from my brain and my brain's memory.
It's been mildly nauseous for weeks now.

And on that note, I think I need a nap to escape from it.


   photo Sharon sig with heart dragonfly butterfly waltz font1_zpsgxy5knqy.png

Further reading on this topic:

The Nose That Never Knows
Smell Training

* I deal with enough and there's no room for drama from me or anyone else.

Tuesday, March 7, 2017

Lamentations & Exultations

Lamentations & Exultations...man, that's what I should have named this site!
 (Don't steal it. If I come across a site with that name I will know you stole it from me and so will everyone else because they can check the date of this post so ha ha on you, thief.)


Speaking of lamentations, the schedule to the left is from one of the New Jersey churches we've been visiting lately as we investigate my family's geneaology that have connections to my Sierzputowski/Stachura heritage.


(I might have an Irish last name but I am really, really Polish because that's where every single tradition I have from growing up comes from: the Polish side.)

When I saw "Sorrowful Lamentations In Polish" all I can think of was old Polish grandmas sitting around church complaining about stuff which, of course, made me want to be there for that.  I mean, how great would that be?!  It would be like the Polish version of Festivus, right?

But, no, that's not exactly what Gorzkie Zale is.
Really it's hymns and prayers - some dating back to the 1700s - that reflect sorrow for the suffering of Christ.

Not as much fun as the idea of Polish Festivus, though.




Speaking of Polish things, this past Sunday we took my mother up to Elizabeth (NJ) to take her on a tour of places that meant something to her.  Sort of like a traveling version of This Is Your Life.  First off, I have to tell you this was nothing short of a small miracle because we finally got her to leave her apartment.  My mother goes nowhere except the grocery store and doctor offices.  We have tried cajoling, we have tried bribes...nothing has worked for a very long time.
Until we started this genealogy thing and she and I started having really long conversations about it.
I've been asking her a million questions about her life, her relatives, and it was like she came back to life.  So we drove two hours to her house and then another hour to Elizabeth. Then we drove her around for two hours while she told stories and I took pictures.


For example, the above picture is Brophy Field in Elizabeth.  (It's a terrible picture, shot from inside the truck because it was about 20° outside and because there is a lot of traffic in Elizabeth and people there would not take kindly to someone holding them up to take nice photos.)
This is the exact spot where my mother was when the sirens started going off all over the city because World War II had ended.
She was with her brother and it seems that the park was locked up but they had slid under the fence (of course it was a different fence back then) to get in the park to play (hoodlums!).  The sirens started going off and her brother took off running, leaving her behind.  When she tried to slide under the fence to go after him and see what was going on, she got stuck!  Luckily for her, a beat cop was nearby and helped unstuck her.

I love these stories.  They are the ones I've been listening to my whole life but they take on a different life when you are actually at the exact location where they happened.

If you have this kind of opportunity, please don't miss out on taking advantage of it.
The advantages are numerous.




While we were in Elizabeth, of course we stopped for hot dogs at Jerry's (we don't go to Elizabeth without always going to Jerry's) but I also wanted to hit up a Polish store that I'd never been to in Linden.

Oh my God, am I glad we went.  Syrena Polish Deli is more like being in a Polish supermarket. Or in Polish heaven.  They have everything.  Can we start with the rings of all kinds of kielbasa hanging at the deli counter?  We bought regular and double smoked and they were hands downs the best I've ever eaten in decades of eating kielbasa.  I also bought apple cake or Szarlotka.  Then I picked up these frozen items:

Alexandra's Kraut & Mushroom Pierogi
I was skeptical because, well, frozen pierogies makes me think of Mrs. T's and if your only experience with pierogies is Mrs. T's then you have never actually eaten a real pierogi.
Happily, these were outstanding for being frozen.  The dough was not too thick or too doughy and they were overfilled perfectly with sauerkraut and mushrooms and the sauerkraut was real deal...not the straight-out-of-the-can/package bitter/sour stuff.
If you have only ever eaten straight-out-of-the-can/package sauerkraut then you never really eaten real sauerkraut.  Stay tuned...I will post my recipe for quick and real sauerkraut soon.

I bought my mother a package of Potato/Cheese and she said they were "just okay" but we can't really take her word for it because she usually makes her own and nothing compares to homemade.

I also bought a bag of frozen grated beets.

Poltino grated beetroots
We are serious beet people in our house but we don't love beets in a can so much so finding this product was heaven because cooking beets is a royal pain.  From this I made Cwikla to go with our kielbasa.  I don't use a recipe but to the beets you add vinegar, brown sugar and horseradish.  The more horseradish, the better...because we like our cwikla hot.  Some cwikla recipes call for ridiculous amounts of horseradish but that would be TOO hot and would take away from the beet flavor, in my opinion.

I will make beet sliders soon and post that when I do.
Yes, beet sliders!  Little tiny sandwiches made with roasted beets.  You won't believe how good they are.

People are always asking us how we find these places and why we travel so far to go to them.
See, I grew up with this stuff.  Polish food was regular food for me.  Same way with Italian food...the real kind anyway.  I was lucky enough to be brought up in a culture-centric environment in a very ethnic area. After school we used to stop for falafel or bialys in Elmora.  Having friends from lots of different cultures meant eating whatever their mom cooked when you ate over.
Also, my father's girlfriend trained at Le Cordon Bleu and taught me how to cook a million different complicated things like coq au vin and tomato aspic (so gross!) before I was 10 years old.
So, I don't do bland.
I also have to go "home" on a regular basis to Elizabeth (and close-by places like New York City!) and when I'm there I shop at the places for the foods I know and love.  Or I look for shops in other places so we have an excuse to road trip and have an adventure.
Our life is anything but bland.


This post wouldn't be complete if it didn't include a lamentation so here it is:

This morning I heard shouting outside my window and when I looked out it was my inconsiderate neighbor yelling for her dog...the one they "walk" without a leash.
The one who runs and poops all over everyone's property.
This is making me nuts.  Who does this?!  I can't imagine being so clueless and inconsiderate.
And so irresponsible with your dog!  One day I fear that dog will bolt at the wrong time and get injured.  Such foolish people.
But what to do?  Any move on our part is going to make for neighbor hostility and I hate the idea of living like that.
Almost as much as I hate the idea of their dog running all over our yard and leaving its gifts.  Our dogs use our front lawn 2-3 times a day.  What if their dog isn't up to date on shots or has some other illness?

People can be such jerks sometimes.  What to do?

   photo Sharon sig with heart dragonfly butterfly waltz font1_zpsgxy5knqy.png
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