Friday, September 30, 2011

I Smell Bacon (Brush with Olfaction part 1)

My first brush with olfaction was in September 2005, not quite a year after my surgery. I was standing at the sink, loading the dishwasher at my dad's apartment while he cooked us breakfast. Suddenly I was overcome with a strange sensation -- just the feeling that "something was happening to me." It began to dawn on me that I was smelling -- the smell of bacon. I wanted to announce it to my dad, but it felt so unbelievable. I was also searching for the right words because I didn't just want to announce "I smell bacon," which, as a child, my naughty friends and I would say if we saw the cops. So I stood there frozen; and then: "I'm smelling bacon." "Yes," my dad said, "I'm cooking it now." "No, Dad," I explained, "I can smell it." It was early enough for me to believe this was a sign that my smell would return, but looking back I also knew I was "smelling" differently. After all, I only smelled the bacon -- not the eggs, the dirty dishes, my dad's cat. I began to theorize that the particles or molecules or whatever entered the air through the steam of the grease, allowing me to encounter this sensation through my skin.

In fact, almost all of my brushes with olfaction since -- maybe 3 times a year -- have had to do with steam, or something else liquid released into the air. Several months later I was sitting on the bed in the Visiting Scholar's Suite (aka "Amie's Room," alternatively "Murray's Room") at Tara and Rob's. Same thing. I experienced a sensation that was at once alien and familiar. Orangey. I realized I was smelling the room deoderizer I'd sprayed to attempt to cover Arlo's scent. I sat frozen on the bed, trying to consume it completely, afraid it would vanish if I moved.

Later that year, July, I think, I was in a funny little apartment in Hove (UK). As I was washing the dishes at the sink an eerie yet delightful sensation came over me. I can remember pausing, my eyes towards the window without seeing anything (maybe the little red couch in my peripheral vision), listening to the sound of the sea gulls down the block, and trying to map the sensation and then, once conscious of what it was, the actual scent. Orange juice. I wished I could smell the sea air as well, but I stood there grateful that a child hadn't finished the orange juice in the glass.

Last night it happened again. This was one of my most fleeting and most unfamiliar scents. I was in a wc in a public restroom at the yoga retreat where I've now been for three days. At this point when the olfactory sensation comes I become aware of what it is a little more quickly. In this case I knew I was "smelling" something but not sure what. Let me say, for the record, given the location, it was not an unpleasant scent. But it was unfamiliar. My first thought was that it was a candle, but then I realized it may well be the lemon-sage body lotion I'd just applied to my feet, my legs, my arms. But I was struck with a dilemma: I didn't want to remain in this tiny room yet was afraid movement would make the smell disappear. I took a chance, and it was gone.

Wednesday, September 28, 2011

Le Panier

I ate a ginger scone this morning. It was delicious. The first bite was a revelation of ground sugar, flour, maybe oats -- not too fine and not too coarse. I couldn't taste the butter or cream in and of itself: I merely perceived it as the element that held everything together and then allowed it to crumble all over again. At one point I had a full chunk of crystallized ginger that literally filled my mouth from one end to the other with its hot gingery-ness. How does one describe it with the limited terms I have? It's bitter and sweet. And hot. But it's also soft and, once crystallized, its threads are barely perceptible.

I don't often think about very particular experiences of eating before I lost olfaction. But I'm thinking of them now -- specific instances or certain foods I ate again and again. A pickled lemon tagine served over cous-cous that David made. I must have smelled it in advance from the kitchen, eager to eat, and then devoured it from our shallow striped bowls. Was I aware of the texture then? I can think of it now: the slices of lemons, peel and all, softened in the stew; shreds of chicken (which I no longer want to eat); the juicy broth consuming everything in the bowl.

Mornay croissants at Le Panier, the bakery where I worked during high school and college: oh my god. A long (unshaped) croissant filled with a thick cheesy béchamel sauce with ground pepper to season it and grated gruyere on top. The croissants were fullest in the middle, so you would start at one end and barely get a hint, and then two or three bites in, the sauce would overtake the croissant in weight and shape. We kept the sauce in white plastic tubs in the walk-in refrigerator. The bakers filled already baked croissants with it and then baked them again lightly. At some point one of the workers (Karin?) pioneered spooning Mornay sauce onto one of our dense fresh breads and then baking it in one of our small ovens. I remember eating those open-faced sandwiches on break, which felt furtive and privileged at once. Senior staff only. But I devoured those croissants, allowing myself to consume and be consumed by heavy cheesy peppery cream. I was aware of the texture, certainly, as everyone is -- more or less -- when eating. But really I was eating for the taste.

I never imagined I would lose my sense of smell. I could imagine going blind, losing limbs, suffering terrible burns, dying. But nothing so banal as not-smelling. For years since the surgery, it seems, I didn't eat with the same voracity -- or vivacity. I ate -- A LOT -- but not with the unbridled gusto with which I consumed croissants at Le Panier. Would I want to eat that way again? Yes. But I'm not convinced that back then I would have noticed the grains of sugar in my morning ginger scone, senseless and mindful all at once.

Tuesday, September 20, 2011

Not Without My Smells!


Sometimes I feel determined to get my smell back. If this were a soap opera, it would totally happen. My lover with fantastic hair would say, “You will have your smells back!” Or, in the less feministy version, “I will get your smells back for you if it’s the last thing I do.” Perhaps things would take a bittersweet turn, so that the first thing I would smell again would be a whiff of his hair as he perished.

The spring after my surgery I offered myself up for experiments to a doctor who was cited in a New York Times article about a man whose lost sense of smell returned (he had an accident rather than surgery). The doctor basically told me there was nothing he could do, though he did offer to allow me to make an appointment through his office. In lieu of such medical intervention I sometimes stand in the shower and try to conjure my smell back on my own, imagining the various products I am using in my hair and on my body. Lemongrass, grapefruit, ill-defined conditioner scent.

Shortly after my surgery I also imagined a film about my experience – my friend Irene would make it, and my friend Chris named it: “Not Without My Smells! The Amelie Hastie Story.” (I mentioned this imaginary film in a scholarly article I wrote, which strangely no one has ever commented on.) When I think about this film, I only imagine a series of montage sequences now. I would start, of course, with the obvious smell guide: my faithful dog. We would train in smelling-nose dog classes, and then we would go out on the field on our own. He would put together exercises for me, organizing several dogs in a row, their butts facing me. He would sniff them, looking at me to summon me over, but I would stop halfway through the group, realizing the folly and the grossness, comically shrugging my shoulders. That Arlo!

Other experiments, with people, would include flowers or household cleaners. But I don’t know what would do the trick. In a moment of frustration, I see myself standing outside the window of a bakery, calling forth, “Ol-faccccc-tionnnn!”  This story must have a happy ending, but ultimately I feel hampered by realism. Somewhere between dogs’ butts, honeysuckle, and Pine-sol, my smell must still reside. But how? 

Friday, September 16, 2011

Fruit


The day after my first MRI and the day before an ophthalmologist gave me the diagnosis that I had a brain tumor, I went to the Farmer’s Market for an assortment of fruit. It was Wednesday. My friend Nancy was flying in from Hawaii that evening, and she would only be home for a few days before she left again. She loved the Farmer’s Market, but given the timing of her trip she would hardly be able to take advantage of it. I couldn’t remember what her favorites were – nectarines, plums, or peaches – so I got some of each. I went to her house to arrange them so that she would see them upon her arrival home after I picked her up at the airport. I couldn’t find a proper bowl for them on the lower shelves, so I climbed onto a counter to search the upper cupboards. On my way down I slipped; there was a cupboard below that opened at each end, so as my foot hit one side it opened, and my knee came down on the edge of the other side. It made a terrible gash: I was afraid of bleeding all over her kitchen, and I remember running to the bathroom and washing my leg in the tub. Though she would surely notice it when I picked her up at the airport, I didn’t want to tell her how it happened, as I knew she would feel guilty. She had just suffered a terrible ordeal, and I hated to worry her about something so minor.

Nancy and I planned to take a walk the next afternoon. After my diagnosis at the doctor’s, however, I didn’t feel as if I could drive myself all the way home, so I called another friend who lived nearby and went to her house first. Upon telling her the news, she simply took care of the situation – directing her husband to take their infant from her and to follow in their car while she drove me home in mine. I wanted to cancel my walk, but it was the only time I could see Nancy alone that day. Yet even though I wanted to see her, I also wondered if I might avoid telling her about the diagnosis. In fact, I wondered if there might be a way I could manage not to tell a number of people, like my mom, whose brother was about to have brain surgery for the same kind of tumor (a wild coincidence) in two weeks. And ultimately I did delay telling a number of friends – people I loved but with whom I didn’t have regular contact (this was pre-Facebook, after all!). I wanted to live in some people’s minds as I was before knowing.

I didn’t cancel the walk, and we went into the large county park – the Pogonip – that was set behind where we lived, alongside our campus. Any walk into the Pogonip from our houses meant we would trace our steps back to return. So, towards the end of our walk – I can still see generally where we stood – I gave Nancy the news, and true to form she offered to come with me the next day to my first appointment with a neurologist. At that appointment, the doctor had me go through a series of tests that quickly became familiar – ones that mainly tested my vision, balance and reflexes. He saw the gash on my leg and began asking questions, imagining it was symptomatic of the brain tumor, an assumption that, for some reason, I found funny.  Instead, it was just a stupid, but normal, miscalculation – taking what I imagined was the easy way down, I thought I could just hop off the counter and land on my feet. To this day, I remember what seems like every detail of that experience – the climb up to check the top cupboard, finding just the right bowl (purple-blue glass?), the sensation of my foot against the lower cupboard, and the surprise of the whack of my knee. I don’t know why I remember. It could have been that very particular Wednesday, lodged between the MRI and the diagnosis, or it might be because it was an accident that left a scar.

The thing is, I never really liked those fleshy fruits I picked up at the market. Nectarines and plums struck me as too messy. And don’t even get me started on peaches – the threads inside and the fuzz out. Yuck. Give me an apple, a banana, cantaloupe – simple fruits with clear boundaries. After my surgery, my mom stayed at my house for about three weeks. Every day we would have lunch, and then I would go upstairs for a nap. A couple hours later I would awake and watch Law & Order reruns (or Columbo, if I got lucky). My mom would bring me a small plate with cheddar cheese and apples. The cheese was amazingly simple; I think it might have been from a basket that a friend had delivered to me from a company like Harry & David. In the early days of the anosmia – when in fact we didn’t know whether or not it would be permanent – I gravitated towards simple tastes. The cheddar was plain and milky, and the apples were sharp and sweet. I can still remember the crunch of the fruit, as I sat up in my bed, invariably wearing one of the new bathrobes I received as a present, with a scarf tied around my head to cover my giant scar. I would try making a little sandwich of the cheese and apples, but I remember it as overwhelming and preferred instead to alternate between them, taking in one taste at a time.  

I don’t know exactly why I don’t snack on fruit. Bad habits, I guess, formed in childhood, when I would come home and eat cookies or cinnamon toast after school. So eating fruit on my own feels like a victory. Two years ago when I was staying at a friend’s house on the Lower East Side, I would walk to the new Whole Foods on Houston for my staples, and there I discovered the glory of the plum. No plum has ever quite matched the ones I tried that summer – I even had one two days ago to shake up my bad habits. It was fine, but not noticeably anything at all – neither very sweet nor sour nor even juicy. I worry it might be ages before I try another.

In writing these little pieces, I have been thinking quite carefully about these settled habits. Why the box of crackers over a nice ripe apple? It occurred to me that part of the pleasure in a cracker is the sense – however mildly delusional – that someone else has prepared it for me. Unless I eat the apple or the plum whole (as, in fact, I did on this past Wednesday), I would need to core it and slice it. I know those apples I had in the weeks after my surgery were delicious. They were sweet and crisp. But each one was handled and cut and cored for me. My mom knew I liked them. And because I liked them – because I could taste them – she kept bringing them to me in the afternoons.


Tuesday, September 13, 2011

Door Number 3



In starting this blog, my expectation was that I would write about my present experiences of living and eating without a sense of smell. In fact, I imagined beginning with a literal entry space. The apartment from which I just moved had a room that I didn't understand. It was the first room you entered when you came into my home, but it was far too big for a hallway or a vestibule. It was located between the kitchen and the living room, but with a door to the common hall on one side of the room and one to my porch on the other and with a giant protruding closet enclosed by a curtain in the middle, it did not seem appropriate as a dining room (or any other sort of room that one would occupy for an extended period of time; in fact, I think my landlady had previously used it as a waiting room for her clients who saw her for therapy). Without any clearer identity or use, I dubbed it my passage. I considered filling it with souvenirs or other collections, but in the end I stopped at decorating it with images of various places: a giant map of the US by Jasper Johns so that I could review the route I'd traveled from Santa Cruz to Northampton, a pair of paint-by-number portraits (one of a cabin at the seaside, another of a house in the snowy woods -- which, before my move, had been an image of a place other than where I was), a cheap photo of Paris. The room was therefore supposed to represent more glamorous "passages" and spaces of my imagination or my past life. But instead it was the room I passed through on my way to the kitchen.

In the evenings I would take this route ritualistically, compulsively, almost unconsciously.  In I would go for some crackers and cheese. Not quite satisfied, I would return a few moments later for some soy crisps or pop chips or some other salty delivery system. Still unsatisfied, thinking perhaps what I craved was sweet rather than salty, but unwilling to commit fully, I would return for a small cupful of dry cereal. Ultimately, that was merely a transition to the hard stuff: a trip shortly thereafter would bring a cookie, another would return the (modest) bounty of a small piece of dark chocolate or three salty-sugary chocolate-coated almonds. Sometimes I would tell myself perhaps what I wanted was fruit or a nice plate of greens, and in fact I could appear to trick myself into being satisfied by a little helping of pre-cut pineapple. But more often than not, I would either start over again with the carbs, varying a bit – maybe even throwing in a piece of toast with blueberry jam – or, taking a look at the empty plates and cups and napkins accruing in the living room, I would finally admit defeat.

At some point – and I can't say exactly when – I became consciously aware of this nightly ritual, this lost and senseless habit. My first thoughts were, "Oh my god, I am a compulsive eater." And not long after (it might have been hours or days or even weeks; I might have had this revelation more than once) I asked myself, "What is it that I actually want?" Most new anosmics experience a loss of pleasure in eating. I refused to accept this loss – of pleasure and of eating – and attempted to relive gustatory sensations again and again and again and again. Such understanding of my own habits was not entirely new to me: within the first year following my surgery I realized a compulsion to repeat that which I could never fully experience again when I ate handful after handful of nuts, or multiple Tootsie Rolls, neither of which meant the same that they used to. What was different this time was the variety of foods I was sampling, so that it had snuck by me. But I realized, as I stood one night in the entry-passage, that my repeated tour of the kitchen and pantry was part of the same impulse – and that the lack of satisfaction I first experienced six years ago would remain constant now, too. Upon this realization, in turn, I decided to use the passage as a place of contemplation and decision-making. There I would pause en route and ask myself what exactly I wanted. Sometimes my response would be, quite honestly, "something I can no longer have." And other times I would conjure an actual object of desire based on that which I could actually taste. Imagining my desire was sometimes all I needed, and I could just return to the living room. But it might also bear fruit – rarely actual fruit, mind you – which had a very particular sensation: the creaminess of milk with the crunchiness of cereal, the sweetness and warmth of a cup of rooibos tea, a frozen citrus popsicle, or a cold, soft ice-cream sandwich (to which I was initially drawn because they are called "Cuties").

I loved that apartment in many ways, but I hated that room. Too big for a hallway, too much in the middle of things for anything else. In the end, I guess, it just gave me pause. 


Thursday, September 8, 2011

My Frayed Nerves

The inevitable questions when I tell people I can’t smell:

You really can’t smell anything?
I really can’t. Nothing.

Not even bleach?
No.

Something burning?
No.

Even if I put something really close to your nose?
No.

My olfactory nerve was severed. Interestingly, the olfactory nerve is not one single wire, but rather multiple conjoined strands (I think of it as like embroidery thread). And, as the surgeon told me, my olfactory nerve was already “frayed” (so having “frayed nerves” is an actual thing – which would be hilarious if it weren’t so permanent!). The surgeon also told me that he attempted to attach one part of that now-detached nerve to the olfactory node, but he expected that if it worked, I would experience smell within six months to a year. However, as my neurologist once bluntly put it, I am “brain damaged,” and such hot-wiring is not possible. Thus the sensations that the nerves may want to trigger from one end have nowhere to go on the other. There is a kind of gap in the road that can’t be crossed. It’s not like Speed, where the bus can achieve an incredible momentum and just leap wildly to the other side. Were it only like Speed, with Jack Traven taking some fantastically strong smell – it could be chemical, like pine-scented Lysol; or nasty, like fish gone bad; or the absolutely sweetest orange possible – and the scent could just miraculously leap across the gap left by my severed nerve! I’m at the wheel of the bus, my favorite handsome off-duty police sergeant-actor is lovingly shoving something in front of my face, and if I could just keep my nose going at 55mph, I could keep smelling! But sadly it doesn’t work that way.*

So what does this mean for my sense of taste? I can still taste the basic four: sweet, sour, salty, and bitter. And I can sense hot things, because heat (like jalapeño heat) comes to us via a different nerve – one related to pain rather than taste or olfaction. Nothing herbal, nothing floral – nothing that we actually experience through olfaction rather than taste – gets through to me. Put rosemary in spaghetti, and I won’t taste it. Put a ton of it in, and I’ll get a vague sense of sweet-bitterness, but it’s likely I wouldn’t be able to tell you what it is. So my ranges of teas have lost their subtle differences, too. I can’t tell Lapsong Souchong (remember, no smokiness!) from Yunnan Gold. However, I can tell good tea from bad tea, like a crap Waitrose bag from loose fancy tea. I still prefer my tea with a little sweetener. I drink it with milk out of habit, but I taste the tea itself more clearly without. But even then, it tastes more like “tea” than Earl Grey or Ceylon. And my favorite – a violet-infused black tea from Mariage Freres – has been lost, coming to me only in imagination and memory (I remember quite clearly when my friend Nancy brought me back my first bag from Paris, and the smell was so delicious and so fully encompassing upon opening it that I did a spontaneous dance after my first sniff!). 

But I keep drinking tea. I drink it all day long sometimes. I vary my blends, ritualistically starting with what I believe is my new favorite: Nilgiri. It has a light sweetness, which I may not have recognized on my own (I only knew that I seemed to like it) had a friend not sniffed it and told me it was “too sweet” for her. A revelation! My second pot is usually Yunnan, which I used to love (it tasted to me like the color red), but which I now basically experience as “strong” (so perhaps the color brown?). Sometimes I have Earl Grey or Lapsong later in the day, but if I think for a moment about what I am missing I feel this hint of sadness that stops me from breathing if only for a second, even seven years later. I drink Rooibos at night sometimes – also a sweet cup, which I find soothing. If put to the test, could I discern the differences between these various cups? I honestly don’t know. I drink with a prior knowledge of what they each are instead, and my memory of what they were at once lessens and intensifies their taste.


* Not to get our collective hopes up too high, but more later on my fleeting brushes with olfaction.

Wednesday, September 7, 2011

Inaugural Entry


Seven years ago, almost to this day, I was diagnosed with a meningioma brain tumor. It was, as they say, “benign,” and it’s true that it wasn’t life-threatening – only quality-of-life threatening. Had it not been treated, I would have eventually gone blind. As it was, its removal instead required my surgeon to sever my olfactory nerve. And so I lost my sense of smell on November 3, 2004 (tragically ironic, as it became a means for me to join over half the US in losing their senses, given that my operation was just a day after George W Bush was elected to another term as president).

When I first met with my surgeon, he said there was a 17% chance I would lose my sense of smell during surgery. While that gave me some hope (an 83% chance that it wouldn’t happen seemed very high!), I also realized percentages meant very little once you’ve been diagnosed with a brain tumor. In spite of what I’d learned over the years from my daytime soaps (think of Nora Hannon Gannon Buchanon!), brain tumors are in fact relatively rare. So, while meningiomas account for about 25% of brain tumors, there are only about 6500 people in the US diagnosed with them a year. How does one balance odds like that? My approach was an eleventh-hour plea: my last words to my surgeon before the anesthesia knocked me out were “please don’t let me lose my sense of smell.”

I thought about calling this blog “Occasional Essays [or entries] of an Anosmiac.” The proper term for a person who can’t smell is actually “anosmic,” but I prefer my version, as it offers a maniacal quality to my new identity. The “occasional” would mark the fragmentary state of mind I experienced after the surgery.  The tumor was lodged in my frontal lobe around my optic nerve, pituitary gland, and my olfactory nerve. It was, as my friend Dirk called it, a “creeper,” or, as the medical establishment prefers, a “carpet meningioma.” In other words, it was spread across a small area of my brain, rather than gathered as a simple mass, which might have enabled my doctor to describe its size as analogous to a piece of fruit or sporting equipment (though because it was so small, before the surgery – and the realization it was a “carpet” – another friend suggested we might call it a marble, which would enable me later to say “I lost my marbles” during surgery). Given the tumor’s complex structure and its location, the surgery affected my executive functions for several months; it was hard, that is, to juggle tasks, emotions, even desires. For a couple of years after the surgery I wrote some short pieces about its effects on me, focusing on very particular objects: candy, shoes, cake. This approach made sense to me, as I felt the form of the writing could then duplicate, in part, my experience after the surgery. Seven years later, I don’t see, feel, or think in fragments in the same way. But I like the liberties this form might enable: snippets of my everyday experience as an anosmic.

Besides affecting my literal sense of place in the world (imagine how olfaction grounds you after the first spring rain, for instance, or when you enter a familiar house), losing smell has most radically affected how I eat. My approach to food hasn’t made the same sense since. And that is where I will begin with my next entry.