Thursday 3 December 2015

Don't tell me to wake up and smell the coffee

Believe me, I would if I could.

I would have liked to steal a title for this post from a British woman who started a blog called the Parosmia Diaries with a post titled "I smell funny.  No, really, I smell funny."  But stealing is bad.  And she abandoned the blog without ever saying if her parosmia improved, so I'm kinda pissed at her anyway.

But you don't even know what parosmia is yet.  I didn't either, until September.  In May, I had one of the worst colds of my life.  It lasted the entire month and induced anosmia.  I'd heard of people losing their sense of smell – and, therefore, taste – from a cold, but it had never happened to me before.  It was heartbreaking and frustrating to miss my beloved lilacs this year but, initially, I wasn't too alarmed as this seemed to be a fairly common phenomenon that resolved itself within a few months.  Indeed, my sense of smell/taste improved steadily over the summer.  Everything smelled and tasted normal, albeit weaker.  But it was getting progressively better so I didn't give it much thought.

In August, I suffered an unspeakable trauma in my personal life and forgot about smelling or tasting – or sleeping or indeed anything else; I was completely shattered.  Evidently, I must have eaten enough to stay alive, but I certainly wasn't paying attention to how it smelled and tasted.  The combination of emotional upset and lack of food gave me acid reflux, also for the first time.  I didn't have any of the usual symptoms, just a persistent cough that was the result of aspirating stomach acid.  I don't like to take meds but, as a singer, I was alarmed at the possibility of damage from this and so treated the reflux.  The cough went away.  But all was not well.

One day in September, I noticed a burning smell with a sour undertone in the office kitchen.  I didn't pay it much heed but it was back the next day.  And the same smell wafted over the bike path as I rode home.  And hit me when I went in Whole Foods or past Starbucks.  And my food all seemed to have that same burnt/sour taste.  I thought it was in the air, maybe a plant processing some type of grain had caught fire.  I was tempted to ask if other people could smell it, but I sussed that it was just me and that everything had just this one smell.  It didn't matter if it was a flower or horse manure or petrol.  Literally everything on earth had this one scent, or no scent at all.  Nothing smelled normal anymore and it seemed to happen overnight.  Gradually, the burnt aspect of the smell diminished and the sour become predominant.  It's a rotten-sour smell and it is noxious.

Of course, I did research.  I discovered parosmia.  It can be caused by head trauma or brain tumour but more often it's from a bad cold or sinus infection damaging the delicate olfactory nerves.  I also found out that it's permanent in about 70% of cases, with a lucky 30% noticing some degree of improvement in 1-2 years.  If there's no improvement within 2 years, it's safe to assume you are stuck that way for life.  I joined online support groups, read clinical studies, spoke to ENTs.  I have yet to hear of anyone who has recovered 100% of their previous sense of smell/taste.

I consulted a local ENT who recommended an MRI to rule out other causes.  The presentation of my parosmia – smell recovering normally and then suddenly one day it all goes wonky – is atypical.  As near as she can figure, the olfactory nerves that were damaged from the cold in May were healing nicely over the summer but the trauma, and possibly stomach acid, damaged them.  Initially, I declined the MRI because my insurance has a $1K deductible and then covers only 80%, so I'd be facing an impossible bill.  But my curiosity got the better of me.  Blue Cross can blow me – you can't get blood from a stone.  The brain MRI (which I heartily do not recommend to anyone not curious about what it's like to be entombed – trust me, even if you have never suffered from claustrophobia in your life, you will not be a happy camper) showed no other possible cause.  I suppose it's nice to know one doesn't have a brain tumour, but neither did it provide any hope or comfort.  The nerves will either grow back in 1-2 years or, much more likely, they won't.

If I hadn't been in the midst of the worst crisis of my life, I would have freaked out a lot more about this already.  But now that the holiday season is approaching, I am starting to get pretty upset about it.  I've already missed Halloween and Thanksgiving and all the autumn-in-New-England specialties.  I live for Xmas scents and foods, for holiday baking.  I've been frantic to find a cure, but there isn't one.  There is a great deal of research into motor neuron regeneration but none into sensory nerve regeneration.  The latter is considered a lifestyle rather than a health issue.  That isn't true – a parosmiac cannot tell if there is a gas leak at home, a burning smell in the car, or if food has gone off.  Some find that all food has too noxious a taste to be able to choke anything down and they must be tube fed or have surgery to induce permanent anosmia.  And the lifestyle effects can lead to depression and isolation.  It's not only food odours that smell bad – everything has the same scent – but our social lives revolve around food.  Many parosmiacs can't go to restaurants, grocery stores, or other places that feature food smells, like movie theatres or fairs.  They can't sit at the table whilst their family enjoys a meal – the smell is simply too gag-inducing.

And the social effects go beyond food.  Although I don't think I ever smelled bad, I have become paranoid about not being able to tell. I take two showers a day, use tons of deodorant, and continually change clothes, just to be sure.  The only scent I wear is lilac and I just had to switch brands.  It is weird putting on scent that smells foul to me, trusting that it smells good to other people.  I have been tempted to hold my wrist out and ask random people, "Does this smell like lilac to you?"

So what do I eat?  Luckily, everything doesn't have the same intensity of the noxious smell/taste (NST).  Most fruit doesn't have any scent or taste at all.  I can identify it by texture, but not by smell or taste.  The tongue can detect sweet, salty, bitter, and sour, so I can still tell if I am eating a sweet or savoury food, even though I cannot determine its flavour.  I can drink wine (thank fucking goodness), but no point in wasting money on anything better than Two Buck Chuck.  I can identify my very favourite food, ice cream, from its texture, temperature, and sweetness, but I could not tell you the flavour.  If I am craving salt, I can eat crisps, but only plain ones.  I rely a lot on visual and texture cues to appreciate food, but they are a poor substitute for flavour.

Eating is trial and error.  I have tried to stick to foods I normally love, but some are just too vile now.  The NST varies greatly between foods.  It's safest to eat one food at a time, unadorned.  The more flavours that are mixed together, the more likely the NST will make eating it impossible or at least unpleasant.  The worst foods for the NST are eggs, coffee, and chocolate.  Since I am broke and have chickens, eggs are a mainstay of my diet.  I simply eat them anyway.  I have become quite adept at buying healthy foods, like kale and broccoli, and choking them down plain, because they are good for me.  Strangely, dairy is not particularly noxious.  It tastes vaguely sweet, without any identifiable flavor.  So, I still eat cheese.  I live for eggnog at Xmas, but can't get its true flavour (or beloved spices like cinnamon and nutmeg and cloves and cardamon), just that vague sweetness, which is disappointing but at least palatable.  I can no longer drink black coffee, but I am going to try an eggnog latte, a holiday favourite I hope I can sort of appreciate this year.

I am stubborn.  I had 3 pumpkin spice lattes this fall before I admitted I could not taste them.  I keep trying chocolate, even though it is particularly noxious. I simply can't admit to myself that I can't enjoy it anymore.  It's retarded, I know, but I can be literally gagging and forcing myself to eat a chocolate chip cookie because I will not admit that I can't enjoy food anymore.

What do I miss the most?  COFFEE, chocolate, and garlic.  And I miss being able to smell horses.  I miss variety in the world.  Someone said to me that at least I can't smell gross public bathrooms or skunks.  Believe me, it would be well worth it to suffer the bad smells to be able to enjoy the good ones.  One friend quipped that she'd love to be able to get it so she could lose weight.  It reminded me of how I used to joke, at 16, that I'd like to get anorexia for about 6 months.  No, you wouldn't want a serious eating disorder just to be able to drop a few pounds, and nor would you want this.

Don't get me wrong:  I am not feeling sorry for myself, nor am I equating parosmia with, say, a cancer diagnosis or the life of a Syrian refugee.  I'm just explaining why I might not eat much if I go out to dinner with you or send as many baked goods this holiday season.

Wednesday 4 November 2015

Life Lesson: Self-esteem does not come from anything that can be taken away.

"If you don't live by the praises of men you won't die by their criticisms.”


I’ve been on a self-improvement quest recently, both inside and out.  I’ve spent considerable time analysing the issue of self-esteem.  What builds and sustains self-worth?  Why is it important for a healthy and fulfilling life?

I don’t think many people question its importance.  It’s evident how a lack of self-confidence causes people misery, leads them to make bad choices, and to place unnecessary limitations on themselves.  My partner of 13 years suffers from low self-esteem and I have observed his pathetic, desperate attempts to fill that void with frustration and pity.

I currently ride a green horse who lacks confidence.  He naturally gravitates to the person or other horse who radiates confidence and makes him feel secure.  With people, sometimes bravado will cover for a lack of deep-seated confidence but you can’t fool a horse.  He will only trust me if I trust myself.

Like most worthwhile things in life, self-confidence has to be earned.  In the U.S., we value self-esteem so highly that children are raised in an environment where everyone is a winner, everyone gets a medal, everyone is awesome.  It’s all very fake and it is creating a generation of young adults who feel an unmerited sense of entitlement and who are facing a rude awakening in the real world.



These parents and teachers who are trying to instil self-esteem in children with unearned accolades have it backwards:  Self-confidence does not come from praise, from never saying one child is better than another at anything.  Self-confidence is built internally.

Self-esteem does not come from anything that can be taken away.

Your job, your car, your house, your possessions, your money, your looks, your physical or mental prowess, your partner, praise and admiration from others….all of these things can be taken away.

What can’t?  Your personal qualities like honesty and integrity, your values, your kindness, your discipline and hard work, your empathy.  In short, your character.

Anything else is a castle build on sand.  When the waves hit it and wash it away, there is nothing left.

To use an extreme example, prisoners of conscience sometimes survive because they know that, even if they are vilified in the world around them, spit on, despised, lied about, they know that they are acting in accordance with their values.  Most of us won’t face such trying conditions, but the point is that building our self-confidence on personal qualities and behaviours that are *completely within our control* is the ONLY way to achieve genuine self-esteem.

If you have low self-esteem, trying to fill the void where it should be can become your sole objective in life.  The constant care and feeding of a fragile ego leads to a powerful self-absorption.  You end up a slave to a ravenous monster who controls you, who demands more and feels sated for less time.  You got the degree?  Now get the job.  You got the job?  Now get the raise, the promotion, the car, the house, the hot spouse, the perfect kids, the perfect body…..and on and on.  There is nothing wrong with wanting any of those things; the problem comes when your sense of self-worth is attached to whether you have them or not.  We’ve all seen rich, gorgeous, successful people who hate themselves.  Why, we think, they have everything you could want in life.  What could be missing?  The answer is character.

It’s a cliche that you can’t love anyone else until you love yourself.  But, like most cliches, it holds truth.  If you don’t have self-esteem, you can’t respect anyone who cares for you.  And you cannot love someone whom you do not respect - including yourself.  You will also be looking to the other person to increase your self-esteem — to make you feel good about yourself from the outside.  It works — temporarily.  But nothing on earth - NOTHING - replaces character.  And nothing is more attractive than character.  Someone who demonstrates genuine empathy, who lives by their own strong values, who is honest, who behaves with integrity, is truly and deeply attractive.

Any other kind of attraction  - built on looks, accomplishments, money, hero-worship, anything not an intrinsic personal quality - is fleeting and superficial.


Let’s say a woman loves a man who invented a life-saving vaccine.  She doesn’t love him because of the success of his invention or the money he made or the prizes he won or because he is famous or respected.  You can’t love someone for those things.  She loves him because of his dedication to helping others, his empathy and concern for the people that are suffering from whatever his vaccine prevents, for his hard work, for his integrity.  All of those qualities would be present, and just as attractive to her, even if he never succeeded, never received money or prizes or praise.

I’m not saying it’s easy to develop self-esteem.  Integrity is doing the right thing when no-one will find out.  Honesty can be challenging when lying to yourself and others will provide immediate gratification.  Living by your values can be tough when you want people to like you.  Building muscle in the gym is easier than building character.  Empathy is hard because we are inherently selfish creatures; it has to be taught, learned, and practiced.  So do patience, and discipline.



But there is no substitute for character.  You’re just feeding the monster if you try to build your self-esteem with anything outside of your control.

Friday 11 September 2015

Where you were isn't as important as where you want to be

Today is the 14th anniversary of 9/11 and there is a popular hashtag on Twitter to mark the occasion: #WhereWereYou. Many of the responses are from younger Twitter users who report that they were in school, but a few responses are sobering:

"Watching on the street just a block away. These words ring in my ears "Mike, Those are people!" as we saw objects fall..."

"I was about to get on plane to bring poll numbers to White House. It didn't include a single question on terrorism or security."

"High up in my midtown Manhattan office. Associate ran in said TV showing WTC burning. I turned, looked downtown, and saw hell."

"A paramedic colleague jumped in his car from CT and drove down to help. He didn't come back."

"Walking to my office in the South Tower when the plane hit. May not be writing this if I was on time to work that day."

"I don't care about ‪#WhereWereYou, you're still here. Sep 11 isn't about your personal tale but about those who aren't here to tell theirs."

That last one raises a question: Why do we care where we were, where others were? Because geopolitics changed that day? Because it was the defining moment for a generation? Yes, to both of those reasons, and it makes us feel involved, connected to a horror show we felt powerless to ameliorate. All of our lives were affected by 9/11, but most of us were helpless spectators to apocalyptic destruction happening in front of us on live TV. Our trauma cannot compare to those directly involved, but the event shaped our politics, our attitudes, our outlook, in ways that still echo today, however muted by time.

So, I'll play:

At the time, I worked for a French company. We had a videoconference, in French, that morning with the head office in Paris. Just before I left my desk for the meeting, I saw on CNN that a plane had hit one of the WTC towers. I assumed it was a small, private plane and I hoped no-one had been killed. I remember thinking that it was early enough that the office the plane crashed into might have been empty, and if the plane did not immediately burst into flames, they might even be able to get the pilot out alive.

Although my French was decent, following and participating in a business meeting in French took a lot of concentration and I thought no more about the plane until building security came in and said we had to evacuate, that we might be a target. I should add that my office was on the 20th floor of Rockefeller Center – the famous 30 Rock, with the ice rink and the huge tree every holiday season. The floors below us were occupied by NBC, who were subsequently targeted with anthrax by mail. I never received another piece of post that hadn't been opened and examined, and I worked there for another year.

Somehow we were made to understand that the plane had targeted the WTC deliberately, and other landmark and government buildings were being evacuated around the country. I remember trying to explain to our French colleagues why we had to sign off so abruptly, but it was very confused. We walked down 20 flights of stairs and regrouped in a conference room at another office owned by the company, in a nondescript midtown office building on 6th Avenue that was not evacuated as a potential terrorist target.

At this point, there was a feeling we (meaning the U.S.) were under attack with no sense of how many more planes had been hijacked and where they were headed. My work colleagues and I tuned into CNN on the big screen in the conference room. Someone brought in the sort of food trays that are served at meetings, which we ignored. My boss's boss had a brother who worked at the Pentagon and she was desperately trying to reach him. She later learned that he was in his office when the plane struck, which was luckily on the opposite side of the building from the impact.

My boyfriend at the time, Hugh, was doing temp work. His current temp assignment was at the WTC. No mobile phones were working – signals were jammed from the volume of calls. I used the conference room landline to try to reach him without success. I know it sounds strange, but I was worried but not frantic. It was so surreal, so hard to take in, that I simply could not believe that he could have been harmed. My coworkers and I saw both towers fall in real time on the news and it felt like watching a movie – it was simply too much to absorb that we were seeing thousands of people perish, live, at that moment, just down the street from us. The adrenaline was pumping, making for an altered state of hyper-awareness that felt more like riding a roller coaster or watching an action movie than being in a real life warzone. I think it's a protective mechanism, our brains don't take in the emotional side at first so that one can function until the immediate crisis is over.

By coincidence, my father was visiting for a yoga event. The class he was attending started at 5:45am, so he had made a habit of going back to my flat for a nap afterwards. I phoned him and woke him, told him to turn on the TV. He didn't believe me at first. When I convinced him I was serious, he asked me what channel. Since I never watch TV, I didn't know what channel CNN was. I remember patiently explaining to him that there was a sticker on the back of the remote that listed all the channels, although it had been worn almost illegible, when he said, "Never mind; it's on every channel."

I then called a friend, a college professor that I thought might not have heard. It seems silly now, but I didn't yet realize that people in classes, people in their homes and offices with no radio or TV on, would have been informed. He knew, and he was worried about his son, who was also temping in NYC. He doubted he was temping at the WTC that day, or anywhere near it, but a parent cannot help worrying. I told him I didn't have any word on Hugh and I knew for certain he was temping in the WTC. I had seen both towers collapse. My friend had nothing to say – what can you say in that situation?

About quarter past twelve, on another phone check, my father told me that Hugh was home. At that point, I left the office and walked home. I always walked the 50+ blocks to and from my office, but all public transport was shut down and the streets were crowded with people, some milling around uncertainly and some trying to get home on foot. I was training for the NYC marathon at that time and I had a painful groin pull that had given me a limp. I don't remember feeling it the whole way home.

It sounds horrible to say this, but I have to be honest and report that there was a bit of a holiday atmosphere all up along Broadway. It was a gorgeous sunny day, clear blue sky, 70s, that felt like summer at its best. Stores were giving away food and beverage to people walking by, and everyone was being really nice to each other. As I said, the shock, the adrenaline, kept the full knowledge of what was happening down the street from sinking in yet. People simply could not take it in and did not know what to think, but they were on their best behaviour. New York is a city of neighbourhoods, and those neighbourhoods can be close-knit, with good people who help each other.

When I got home, Hugh told his story: His train went past the WTC stop and let everyone off at the next one. This is a frequent occurrence in the NYC subway, "due to a police incident", so Hugh's only feeling was of annoyance that the walk back up from the following subway stop was going to make him late for work. When he emerged onto the street, it was to see the towers smoking, crowds screaming and running, and cops herding the emerging subway riders east, away from the WTC. He walked north, skirting as far east as he was forced to by cops and crowds. At one point, police were directing everyone down the steps into the City Hall subway entrance. He had a strong instinct not to get trapped underground but he was herded down with the crowd. When he saw the station and the platform were a solid sea of people, survival instincts drove him to fight his way back up the stairs to the street, right into a huge cloud of dust – the first tower had just collapsed. He made his way north, past people white with dust, floating pieces of paper landing on him, to Houston Street. There he saw a woman with her hand over her mouth screaming "Oh my God, oh my God" over and over and pointing downtown. He looked back in time to see the second tower collapse. He then walked home, well over 100 blocks.

We got take-out and camped in front of the TV. I called local hospitals in the evening, to see if I could go give blood – the feeling of helplessness, of wanting to do something was overwhelming. (The Onion captured this feeling well in its now classic 9/11 coverage). But the hospitals were overwhelmed with offers to donate and were advising people to stay home. The grim truth was that there were no survivors needing blood. Medical staff not on duty had raced to emergency rooms to help cope with the casualties, who never arrived. They were also refusing volunteers on site. Unless you had Red Cross or other formal disaster relief training, you weren't allowed south of Houston Street.

My office – indeed, most of the city – was shut down the next day. The building where my father's yoga event was being held was turned into a makeshift morgue, filled with charred body parts waiting to be matched with missing loved ones. My dad, Hugh, and I walked in the park, and went out to a café, just to get away from the TV coverage for a few hours. But there was no relief. The smell from downtown permeated the air and served as a constant reminder. The TV was now listing names of the missing, showing photos, interviewing crying relatives. The scale of the death, the vague numbers of passengers and office workers, were now being replaced with individual names and faces and life stories. The NY Times ran bios of each victim, every single one, over the following weeks. Nothing seemed to matter; everything paled in relation to the scale of the senseless loss of life. The news reported the search for the missing, the dogs sniffing at the smoking rubble, the hope fading. They hid rescue workers for the dogs to find because they were getting depressed at finding only body parts, no living victims.

The following day, we went to an Indian restaurant downtown and saw the memorials to the missing, those now iconic street corner collections of candles and photocopied pictures. It is gut-wrenching to recall even 14 years later.


My father's flight was cancelled, but eventually he got home. Work resumed at the office, albeit with the anthrax scare keeping us all jumpy and leery of our formerly beloved landmark building. I put off running the marathon until the following year, ostensibly due to my injury, but also because my heart was no longer in it. It seemed so selfish, a petty goal in the face of the loss so many had suffered. But I did run it the next year. Life went on. 9/11 became something we now talk and think about only on its anniversary, when the names of the victims are patiently read aloud, a process that takes many hours, to let their relatives know they are not forgotten.


My memories of the event matter only to me, and not even to me so much anymore. #WhereWereYou and other "never forget"-type memorials are meant to help us avoid repeating horrors in our history. This is not a political essay, but I think it's safe to say that the U.S. response, and subsequent destabilization of the Middle East, have made the world less, not more, safe. It might be more useful to start a hashtag #WhereWillYouBe to begin a dialogue about the world we want to live in, the safer, kinder world we had hoped to create in the initial global goodwill that blossomed after 9/11.

Tuesday 10 February 2015

Social mobility, social welfare policies, and the myth of the American Dream

One question I get every day is why is the U.S. the only developed country without universal health care?  A related question is why is the gap between rich and poor increasing?  & why does the U.S. have such a different attitude towards the poor than the rest of the world?  This is but a cursory answer, and it begins with a little comparative history.
In Europe, there was an almost total lack of social mobility prior to the 20th century.  The socio-economic class into which you were born completely determined your opportunities in life.  This was understood by everyone rich and poor, aristocrat and commoner.
In the U.S., (leaving aside for our purposes legal discrimination based on sex, race, etc.) the class system was formally abolished.  Everyone was entitled to 40 acres & a mule and, if you worked hard enough, you could pull yourself up by your bootstraps.  A boy born dirt poor in a log cabin could become president.  A barefoot child laborer could rise to become factory owner and robber-baron capitalist.  It is the myth of the American dream.
Now think about what attitudes toward poverty are shaped by these two scenarios.  In Europe, poverty is an accident of birth, so the poor deserve help to level the playing field.  And Europe has created social welfare programs that were designed to overcome socio-economic barriers.  The problem in the 21st century is that those barriers are long gone.  It has been nearly 100 years since people were forbidden to attend university if they hadn't been born into a high enough class.  Even the heir to the throne in Great Britain has married a commoner.  But the attitude that there is nothing you can do to better yourself persists and it is a problem that Europe needs to sort out, along with immigration, but that is another post entirely.
In the U.S., the myth that the playing field is level, that everyone has an equal chance to succeed if they work hard enough, has resulted in a blame-the-poor mentality.  There is a belief that, in this land of opportunity, it is your own fault if you are poor, so why should people who have worked hard for their own success help you?  This is why there is universal health care in every other developed country except the U.S.  Americans blame the poor for not being able to afford health care and other necessities.
In the post-war era, when the social welfare programs that we do have in the U.S. were launched, there was a temporary shift in attitude because of the Great Depression and WWII.  There was a shift in Americans looking to the federal govt. rather than the states to solve problems because the problems during the Depression were too large for states to handle individually.  The frontier had closed at the beginning of the 20th century, the population was increasing, and urban slums filled with poor immigrants working for obscenely low wages in dangerous working conditions were growing during industrialization.  As the population urbanized, we went from a self-sufficient agricultural economy to a dependent urbanized one -- i.e., instead of producing what they needed to survive, people worked for wages, which they spent to buy these necessities.  Living in crowded conditions near employers, they could no longer produce goods for themselves, so they became dependent upon wages.
All of these things (closing of frontier, immigration, population increase, urbanization, industrialization, Depression) led Americans to take a more European attitude towards poverty, that it was not laziness on the part of the poor, that the playing field was not level with equal opportunity for all.  There was also a different attitude towards women working outside the home.  So-called welfare was originally meant to support widowed and abandoned wives with children, who were expected to stay home with their kids.
Now, fast forward to the 21st century.  These social programs were created before most people living today were born.  There are families where succeeding generations have been born to mothers on welfare.  There is an argument that dependence upon social welfare has become a way of life rather than a temporary safety net for the truly needy.  Those who oppose aid to the poor, including universal healthcare, believe that the playing field is now level, that those in poverty are simply too lazy to work and earn money for themselves.
The reality, of course, is that the playing field is far from level.  A child born into an urban ghetto with failing schools and gangs does not have an equal chance of financial success as a child born into a middle-class suburban community with good schools and Scouting.
Most of the debates between proponents and opponents of social welfare policies dance around this central ideological difference, but it is simply that those who oppose helping the poor believe poverty is their own fault and those that favour helping the poor believe that their socio-economic circumstances are beyond their control.  & n'er the twain shall meet.
The way to end poverty is not to continue the social welfare programs of the past (most of which have been updated already) but to look at the root causes and address them with a "teach to fish" not "give a fish" model of assistance.  But that is not going to happen as long as society is split in where it places the blame.  As I always say, you can have your own opinion but you can't have your own facts.  Both sides need to come to the table with the same set of facts before meaningful discussions about solutions can occur.