Tough Medicine

I get overly worked up when I defend vaccines.  Because basically, I think that you deciding not to vaccinate your children is going to result in the end of the human race.  There will be successive and inevitable waves of disease and every one of us will die horrible, nasty deaths and it will be all your fault because it was preventable.

Reality check:  Probably not.

But it’s clear how divisive the issue has become and how easily we slide into our respective extremes of position.

I find it ineffective to reason with anti-vaxxers, because reason isn’t what keeps people from getting vaccinated.  Fear and intangibles are.  I can try to tackle every objection to vaccines head-on with fact and statistic, but when it comes to fear, anecdote holds greater sway than science.  If someone tells you that their child was ‘never the same’ after receiving the shot, it’s hard to put your own child at risk with that at the forefront of your mind.

heart pillThere’s a lot at stake for parents.  Being responsible for the well-being of a tiny human is an overwhelming burden and it’s hard to knowingly and willingly put your child (potentially) in harm’s way, especially when that choice is to treat them for illnesses that they don’t have yet and may never be exposed to.  Vaccines are insurance.  You may never need them.  And in the same way that a lot of people make the decision not to buy insurance and opt to take the risk, some parents play a game of weighing the odds and forego the vaccines.

But there is a reason why vaccines, like car insurance, are mandatory.  For the very reason that the risk to self and others by not being vaccinated far outweighs the risk to the individual of negative effects.

And there are negative effects.  I am not going to sugar-coat it.  There is a potential risk for a negative reaction to each and every vaccine.

Just like there is a potential risk for a negative reaction or outcome to any treatment or medication, or in fact, any action in life.

I am not here to minimize how scary that is.

What I am asking for is perspective.

If we return to my own personal fear-based scenario above, the odds of there being a worldwide epidemic due to some parents not vaccinating their children are minimal.  What is reasonable to expect is that with increasing numbers of parents refusing to vaccinate, we will continue to see pockets of outbreaks of diseases that should have been eliminated by now.  Children (and adults) will suffer (and some will die) unnecessarily from diseases that could have been easily prevented.

For an anti-vaxxer, the greatest fear is harm to their child.  But the reality is that the risk of your child experiencing a serious negative reaction to vaccines is minimal.  You put them at greater risk when you put them in your car.  The risk of adverse reactions to penicillin is far greater, but most parents would not refuse antibiotics to treat a child’s infection.  The risk of adverse reactions to measles, mumps, whooping-cough and flu are higher (especially in children under five) still.

The problem with hot-button issues is that it quickly becomes habit to slip into rhetoric when debating either side of the issue.  Emotion is summarily dismissed as irrationality, with a focus on bolstering our arguments with facts and figures.  I’m certainly not going to suggest giving up on statistical evidence or the science supporting vaccines.  But I am willing to concede that every decision which is made in terms of  risk management ultimately involves a gut decision.  Until we acknowledge the emotion and fear surrounding the issue, there will be little positive movement in vaccination rates (and worse, they are likely to continue a steady decline).

More needs to be done to assuage the genuine and at times crippling fear that parents feel, and to do that we need to acknowledge negative outcomes.  Parents need a game plan.

There is a tendency in medical circles to downplay risk without recognizing that an essential component of risk management is the ‘Plan B’.  In evaluating any worst-case scenario, there is always a plan of treatment or course of action to continue to mitigate negative outcomes.

Parents need to know that negative outcome is not doublespeak for ‘irreversible damage’.  In the same way parents are advised that pain can be treated with anti-inflammatory medication and that allergic reactions can be treated with epinephrine, for each negative outcome there needs to be an explanation of a treatment plan.

The problem with fear is that when it is based in reality, even when it is proportionally distorted, it is impossible to entirely dismiss.  And that’s not a bad thing.  Fear is useful when it protects us, just not when it paralyzes us.  If we are to keep that fear in check, we need the tools to manage the anxiety it elicits.

The war against anti-vaxxers won’t be won with intimidation or statistics, and most importantly won’t be won if we treat it as a war at all.  Intimidation only fuels fear.

If strides are truly going to be made in vaccination compliance, it will be through the acknowledgement of fear and risk, and via a change in attitude in terms of how we manage fear-based trepidation as a cooperative effort between parents and physicians.

/rk

(originally posted at http://medium.com/tough-medicine/93e06ce374fc)

 

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I’m Not As Think As You Sexed I Am

I once wrote my father a letter.  There must have been more of them (and there were certainly emails in later days), but interestingly I only remember this one, due in large part to his response.

In it, I shared an anecdote about a dream I’d had.  I only remembered the ending:  A man came up behind me as I was going towards my front door in the dark, grabbed me from behind with his arm pressed across my throat, and menacingly whispered “carburetor” in my ear.  It was petrifying.  I woke up in a cold sweat.  But it was also absurd.

Which is why I shared the story.  I thought he would laugh (like I did) at the absurdity of it.

Instead, he wrote back with a lengthy essay about how I was young and in bloom, and discovering my sexuality and was bound to have a lot of mixed feelings and fears about it.

I was pretty sure I hadn’t written anything about sex, so that left me mostly confused and uncomfortable.

mehThe reality of my sexual development was complicated.  Things most happened at the initiation of others.  I had played “you show me yours and I’ll show you mine” with one of my sitter’s sons (at his suggestion), and we watched each other pee.  In grade 5, a group of us at school would play kissing tag.  I ran super-fast, clearly missing that the point was to be caught, not to evade.  That progressed to other kissing games (without the running).  My kissing technique consisted of letting the boy press his lips against mine until I ran out of air.

From the outside I seemed fairly naïve and inexperienced.  And I was.  And I also was not.

Around the same time, a female friend had begun teaching me oral sex.  I had also found my mother’s Joy of Sex books, hidden away in a drawer of her desk.

But emotionally, I was barely comfortable speaking with boys.

At about 12, a friend decided I should begin dating her boyfriend’s best friend.  I barely knew him.  He got bored with me pretty quickly when he realized I wasn’t interested in much beyond a peck on the lips.

At our next visit, my father (thinking that pre-teens dating was just hilarious) smugly asked me how my boyfriend was.  When I told him we’d broken up and he wanted to know why, I told him the truth: “He got my best friend pregnant and she had an abortion.”  He was shocked.  And it satisfied me to shock (and silence) him.

I didn’t have another boyfriend until I was 18.  And in the heteronormative sense at least, I was still a virgin.  He was 21 and in university.  I was still on the fence about when (and if) I even wanted to have sex.  But once again, my father assumed he knew all about my sexuality and took it upon himself to call my mother, to tell her it was time to “get her on birth control.”

And so it was decided.  I would get on birth control.

And so I decided I should probably have sex.

I honestly don’t know to this day if I might have waited longer if they hadn’t unwittingly given me their tacit permission.  Somehow by doing so, there didn’t seem to be any reason any longer not to do it.

/rk

The Guilty Mother’s Lament

badmommyDearest children of good mothers:  One day, your otherwise loving and attentive mother will almost kill you.

I am not speaking of overt neglect or abuse, or even intentional harm.  But somewhere in the process of parenting you, your darling mother will make a poor decision or be distracted for a split second and you will be irreparably harmed.

Or at least that is how you will tell the tale, and in spite of her attempts to play down the course of events, your mother will secretly and guiltily agree with you.

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For instance, I’m sure my son will share the story of when, at the age of 2, he stepped off the pier we were standing on at our cottage and plunged underwater while I stared at him FOR A FULL 3 SECONDS trying to figure out if I could retrieve him by reaching my arm out rather than getting fully soaked.  I did ultimately jump in after him and yank him to the surface, but I am sure for those three seconds his poor little mind questioned all he knew about the universe and it is a miracle that he survived and has not been warped for life by my hesitation.

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My own sad story dates to my 19th year, when I was fully and pathetically in the throes of a chest cold.  Insistent that I was unable to go to school, I spent a week consisting of days on the couch in front of the television and nights where I would literally crawl on the floor to my bedroom at night.  I was dying.  Clearly I was dying.  How could she not tell I was dying?

My mother said I was not dying.  She felt I was being overly dramatic and told me to knock it off.  When I remained steadfast, she ultimately relented and took me to the doctor, if only to call my bluff.  The doctor took out his stethoscope, listened to my back, declared it to be viral pneumonia and prescribed a month of bed rest.  I tossed the diagnosis at my mother like an accusation.  It was met with silence.

~~~~~~~~~~~~~~~~~~~

My mother’s own near-brush with tragedy came around the age of 12, I think?  Maybe younger.  Feeling deathly ill and weak one morning, my grandmother pushed her out the door nonetheless, and forced her to walk to school.  Based the version of the story told me by my mother, I pictured a 20-mile walk across countryside in dire weather.  (My mother grew up in suburban Ottawa and the school was down the street.)  She was sent home when she developed a rash.  It turned out my mother had scarlet fever.  She did, however, live.

~~~~~~~~~~~~~~~~~~~

There are stories in the news every day of parents who abuse and neglect their children.  Horrific stories.  These are not them.

If this is your reality — if you have just one story that you bring out of storage with which to tease and shame your mother — a moment characterized by a split-second moment of weakness or error of judgement where you ultimately turned out ok, you probably have a pretty decent parent.

Because it’s the part we leave out of the stories that is important.

Grandma took my mother to the doctor, got her the antibiotics and took care of her.  My mother took me to the doctor, took care of me, and even collected my homework from the school (uh… thanks I guess).  And although I will replay that hesitation in my mind over and over and over, I did jump in the water to save my son.  I remind myself that it didn’t happen because I wasn’t paying attention or being neglectful.  I was there, standing beside him.  And he tripped and fell in.  And I did exactly what I was supposed to do.  I got him out.

We do a lot of things with our children as mothers which we convince ourselves will scar them for life.  And kids can be scarred, emotionally and physically.  But these aren’t those stories.  These are the stories of halfway decent, doing-their-best, pretty good mothers.

rk/

The Apartment

After my father’s book sold, he suddenly had money.  A lot of money.  According to him he was a millionaire, and while I suspect that this was likely an exaggeration, the book did make it to #10 on MacLean’s Magazine‘s national bestseller list.  He spent money like it was in endless supply.  He rented a large office (with a shower!) to work on his next book (a spy novel, which he never finished), and from which to work out various investment deals.  He only carried 20s or 50s in his wallet and dished them out liberally.  He bought a half-million dollar house to live in with his wife and new baby (my half-sister).  And he rented an apartment.

We never discussed why he needed an apartment, but he told me not to tell my step-mother about it.

He also started drinking heavily and using cocaine.

I first found out about the cocaine during a conversation in his car, where I expressed some concern that my brother was smoking (cigarettes).  My father started to grill me:

cocaine“What about drugs?  Is he doing drugs?”
“I – I don’t know.  Maybe?”
“What do they look like?”
“Dad, I said I don’t know if –”
“Do they look like this?!!
And he pulled out a bag of cocaine.
“What?  Dad, no.”
“You can tell me.  You can come to me.  I’d rather you come to me than get it off the street.”

I’m a little fuzzy on the rest of the conversation*.  I think I just changed the subject.

~~~~~~~~~~~~~~~~~~~~~~

During one of my visits to him in Toronto, my father took my best friend and I out to a nightclub.  This was clearly designed to impress us:  he made a point of telling us that it was a member’s only club.  He bought our drinks (we were underage) and we got very, very drunk.  Afterwards, he offered us his apartment to sleep at.  But on the way there, he wanted to stop by his office to grab the keys.

When we got there, he showed us around.  He then proceeded to pour out lines of cocaine on his desk and snort them in front of us.  I think he offered us some (again, my mind gets a little fuzzy here*), but we both declined.  He then dropped us off and we spent the night sharing the apartment futon, where I don’t think I got much sleep between the room spinning, and my low-level anger and resentment stewing in my mind.

~~~~~~~~~~~~~~~~~~~~~~

In the summer after my first year of university I needed a place to live.  My father invited me to stay at his house in Toronto.  There wasn’t technically space for me (It was a two-bedroom), but since my dad was sleeping on the couch, my toddler sister shared the bed with her mother and I slept in my sister’s bed on the floor in her room.  This was intended to be a temporary stop-over to my living for the summer at his apartment (which I still wasn’t supposed to mention to my step-mother).  But my dad kept putting me off.  For one reason or another, I couldn’t move to the apartment yet, until he sorted some things out.

In the meantime, I was looking for temporary work.  After a short stint in telemarketing (ugh) I found a fairly well-paid (but gruelling) job at a meat-packing plant, but they wanted me to start on Monday.  Something I couldn’t do without a pair of steel-toed rubber boots.  They weren’t expensive (about $25) but I was strapped for cash.

In my wallet, I carried with me an American Express card that my father had given me for birthdays and emergencies.  For birthdays he would tell me how much I could charge and I’d shop for myself.  For emergencies… well, there hadn’t been any emergencies.  Except this.  This felt like an emergency.  I needed the job and it was a small amount.  I knew I’d be able to pay it back to him.

I tried to contact him, but he didn’t answer.

So I charged the card.

When I finally got through to my father he exploded.  His American Express account was in arrears.  He wasn’t supposed to be using it.   We screamed back and forth at each other over the phone.  I knew I shouldn’t have charged the card, but any feelings of remorse in that moment were superseded by a sense of fury at my father for overreacting and not being straight with me in the first place.  He was in dire straits financially, but he had pretended to me and everyone that everything was fine.  He just kept screaming and blaming me for the situation as if my $25 credit card charge was solely responsible for his world falling apart.

I told him to go fuck himself and hung up the phone.

We didn’t speak for a long while after that.  He declared bankruptcy and had to sell everything.

Needless to say, I didn’t get the apartment.

/rk

*I’m not trying to obfuscate here:  Under moments of great stress, I sometimes retreat into my head as a safety mechanism.  Because of this it’s sometimes easier to remember feelings and thoughts rather than tangible memories of actual events. 

Was, Not Was

Reality is both subjective and fluid to a person with bipolar disorder.  I’ve touched upon my issues with delusion in previous posts.  It’s a difficult thing to explain to someone who is not mentally ill, that there is nuance with delusion and psychosis.  I think people can wrap their heads around crazy; they can picture the person who hears voices, who sees things and who is detached from reality.  What is trickier to understand is that this same person might appear normal.  That they might function.  That someone might experience these things and still walk through life, paying bills and making friends and acting like they’re not living what most people would consider a nightmare, is a bit hard to relate to.

It’s not hard to know that the voices in your head or the unsolicited thoughts are lies.  I do live in the real world, after all, and I’m capable of rational thought.  But in times of stress, they become insistent.  Relentless.  Ignoring them becomes less practical than compartmentalizing.

Flickr: Cross-stitch ninja

Flickr: Cross-stitch ninja

I live in two realities.

Or rather, my experiences are divergent.  Bubbles occur in my stream of reality when I am, quite literally, of two minds about something or someone.  I had a moment like this recently on my birthday while on a visit to the Biodome in Montreal.  At the Antarctic exhibit, there were puffins.  I was overwhelmed by feelings of wonder and surprise and burst into tears.  It’s not like I’d never seen photographs of puffins before, but somehow, somewhere along the way (in spite of evidence to the contrary), I had compartmentalized a belief that they were mythical creatures.

There is no particular pattern to my delusions, except for the commonality that they persist in spite of the fact that I know they are not factual.  I’ve touched on a few of these in previous posts:

        • I have supernatural powers, including but not limited to invisibility, telekinesis and flight.
        • My father and stepmother, besides being themselves, were also John Lennon and Yoko Ono.
        • I am an atheist and do not believe in an afterlife but my dead grandfather is watching me and I used to have conversations with him in my head.
        • I don’t expect to wake up tomorrow.  This one has made it very difficult to follow through on school, long-term commitments and to plan for the future.
        • Stuffed animals come alive at night.
        • People can read my thoughts.
        • Animals can read my thoughts.
        • I have a baby that I am forgetting about.
        • Dreams are real life and real life is a dream.
        • I have imagined my husband and one day I will wake up and he will have disappeared.
        • I have imagined my son and one day I will wake up and he will have disappeared.

Combatting these delusions is exhausting.  How strong and persistent they are waxes and wanes depending on my mental state.  But what is even more exhausting is hiding the crazy.  Trying to appear normal while all of these things are going through my head only feeds into the notion that other people can sense what is different about me.

Because of that, there is a certain liberation in outing myself.  In writing, I lay myself bare.  I think that more than anything, fear is what keeps people from healing.  To avoid facing their fears, people will lie and avoid and build a wall around themselves.  The fear of being ‘found out’ for who we are and having our private selves revealed can be paralyzing.

Surprisingly, there is nothing that has given me a greater feeling of control over my life than baring my inadequacies.  I am the captain of my ship.  There is satisfaction in knowing that the decisions people make about my worth (good or bad) are based on truths they know about me, rather than from some perceived reality.

/rk

The Girl That Wasn’t There

Around the age of 6, I developed the delusion that I was invisible.  Not all the time, of course, but it seemed to be a condition that would come and go, with increasing frequency.  It started in little bits.  Outgoing and chatty around close family and friends, I had always been silent and cautiously observant with new people — not so unusual for a young child.  But reaching school age set in course a series of events that fundamentally changed how I viewed the world.

Abuse in daycare taught me to hide.  Silence and avoidance became a matter of both physical and emotional survival.  Initially, school became a place to thrive:  I was bright and engaged, and eager to please my teachers.  I wanted to make friends; an unexpectedly difficult task.

imnothereI had a few strikes against me.  My peers came, for the most part, from two-parent middle-class homes.  I was the only child I knew whose parents were divorced, which made me a curiosity among the other children and elicited sympathetic looks from the teachers.  My mother was also about 10 years younger than everyone else’s parents.  Ultimately though, I knew it was my own personality that set me apart.  I was odd.  This was clear from how the other children looked at me, and how they laughed and whispered.  I noticed how I didn’t get invited to parties (or how I would get invited once and never again).

So I stopped trying to connect.  It was just easier.  Interaction at school risked rejection.  Interaction after school at the day care risked physical or emotional torture.  I made myself quiet.  I didn’t draw attention to myself.  I disappeared.

This did nothing to lessen my anxiety.  It became more and more difficult, for instance, to avoid the other children at recess.  My lack of participation there made me a target for bullies.  I couldn’t hide out there in the open, exposed.  I found any excuse to assist the teacher during recess to avoid going outside.  When that stopped working, I developed (literally) gut-wrenching stomach cramps and was prescribed anti-anxiety meds for stress.  I was 7.

But then, an escape presented itself:  the nurse’s office.  When things felt overwhelming, I would complain about my stomach and ask to go to see her.  She was kind.  She let me lie down for a bit and then would send me back to class.

And then one day I went to her office and no one was there.

I knew I should probably go back to class… but I didn’t.  I lay down on the cot.  I thought for sure someone would come and find me out, but they didn’t.  After about an hour I went back to class.  And the next week I did it again.

I would disappear for hours and no one seemed to care or notice.  

They forgot about me completely.

Of course as I got older, I recognized that logically I couldn’t really be invisible.  But I seemed to be forgettable.  People I’d met before would have to be re-introduced.  And so I stopped introducing myself to people entirely, unless prompted.

I still fight the voice in my head that tells me that people don’t see me.

I am easily put off trying to connect with others.  If someone gets my name wrong, or fails to acknowledge me when I am with other people, I assume they don’t remember me.  When I meet someone I know, I always wait for them to acknowledge me first — I need confirmation and reassurance that I have made an impression.

It takes me time to open up with people, but once I do, they are surprised to find me gregarious, opinionated and blunt.  A lot of friendships have ended at that moment — the moment people are exposed to the real me.  I overshare.  I lack tact.

The difference between the invisible girl and the woman I am now is that I want to be seen.  I need to be seen and to be remembered.  I need to leave some kind of mark and for my name to mean something.  I need to be valued and hold a place in people’s lives.  And what I’ve discovered is that those who want to be around me — the ones that don’t turn away because they find me odd, or difficult or strange — are the people I want in my life.  They confront me, challenge me and discuss our differences.  They support me.  They don’t reject me or withdraw their affection.

And most importantly, they don’t let me be invisible.

/rk

A Card Would Be Fine

For my 16th birthday, my father told me he had cancer.

It wasn’t until several years later that I found out it wasn’t true.  He hadn’t started out with the intention to lie to my brother and I, but as usual, things got away on him.  He’d gotten pretty far behind with his child support payments and to get my mother off his back, he told her he was dying.  I think she initially met this claim with skepticism (I’m not sure of the circumstances, but he apparently had used this tactic once before when she left him), but my dad spun a very convincing yarn.  As a journalist and an avid reader he was a knowledge sponge, and even in pre-Google days he was good at absorbing facts that helped lend credence to any story.

My mother was devastated.  And she insisted he tell his children.

He hadn’t anticipated this scenario.

He had a tendency to create lies as a defence mechanism.  But as a reactionary, he often didn’t plan ahead and consider how the chain of events might play out.  So he kept putting my mother off.

deathanddyingIn an ironic twist of events, as a creative writing assignment for school that year, I was writing a play about a middle-aged woman who dies of colon cancer.  (Not actually ironic at all, as I had been suffering from abdominal pain for quite a while and held a secret belief that I was dying of just that.  This was about 5 years before my ulcerative colitis diagnosis.)  Unbeknownst to me, my mother had informed the school of my father’s condition, and when the teacher read my project, he immediately contacted my mother.  The parallel was too much for her and she demanded my father tell us about his condition at his next visit.

So he did.  And I grieved.  I had begun high school with a A- average and proceeded to slowly tank my grades.  I missed classes.  My mother gave me a copy of On Death and Dying and I worked my way through the stages.  But somewhere around acceptance, doubt started to creep in.

For one thing, he didn’t die.  Or particularly get any sicker (we didn’t see him much, so that one was harder to be sure of, but he didn’t seem any worse).  Once, as an explanation on why he was still hanging around, he sent a copy of a news article about an experimental new treatment that he claimed he was on.  But considering how few people were being given that treatment, I was skeptical of how he had managed to get on the list.  He wasn’t named in the article, so there was no way of verifying it one way or another.

And then, on a road trip with my grandmother and her friend, while she thought my brother and I were asleep in the back seat, I overheard a conversation that reaffirmed those suspicions.  She was angry at him for his manipulation.  She accused him of making the whole thing up and expressed her frustration over not being able to do anything about it.

Inside I stewed.  I was furious at her for the accusation and felt defensive of my father, but ultimately I couldn’t sustain that emotion.  Everything pointed towards her being right, and she was only saying what I had been thinking for a long time.

There was no confrontation.  There was no confession.  We just all stopped talking about his cancer, and a few years later when his book was published and he was able to pay child support again, he didn’t have any reason to use it as an excuse.  And now that he was flush with cash, birthdays and holidays were acknowledged in kind.

That was the thing about my father — when he was wealthy, we’d get envelopes of money for our birthdays and holidays.  When he was poor, we wouldn’t even hear from him until weeks after, with a phone call explaining how he’d missed it because he was in an accident, or he went temporarily blind, or some other catastrophic explanation designed to make us feel guilty for being disappointed in him.  I think it was more than just guilt that guided his behaviour.  In his mind, we only loved him for his money.  Our acceptance of that money confirmed this belief.

But really I only wanted contact.  Given the choice of guilt money or emotional blackmail, neither option held much appeal to me.

A simple card or a phone call would have been less painful.

/rk