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
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...
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| Sharon the Olfactory Crusader |
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.
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.
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