Letting Go

Happy Mother's Day!

I've been focusing on some heavy stuff during the last five months: depression, anger, fear, misdiagnosis, illness, a near-death experience, and loss.

You know what I learned from sharing my deep dark fears and my private journey in a public space where anyone in the world can read it? Letting go has made me free.

I let go of my fear that you will judge me.

I let go of my sadness, my anger and my shame.

I let go of my need to help karma find Dr. H.C.

I let go of my fear that I will get sick again.

I may very well get sick again; I may even lose myself. But I know what to do, I've rallied support and I know that it's possible to come out on the other side standing tall and pretty much back together again.

Thank you for reading my story and for sharing your stories and advice. It has helped me let go.

I love blogging so much I don't want to let that go, so in the next week or so I will transition to an entirely new blog.

After examining my illness and depression, I want to keep it light for a while. (Though, if you know me, you'll know there will be an element of seriousness in everything I do.)

Consumerism has always been fascinating to me. I've thought about it a lot.

Take today for example, a holiday I think is one of the least commercial. Moms want to take a day off and be appreciated. Kids make a special breakfast or clean the house or write a poem in a card.

It's not about diamond rings or dozens of blood red roses.

Or is it different for you?

The Space Between

Part of the reason I‘ve been writing this blog is to answer the question I posed in Up For Debate: what is personality? Is it more like neurons (the mechanism that releases the chemical) or the synapses (the space between, where one chemical is deposited to meet another chemical)?

The girl who sang in the shower disappeared for a few years. I’m not exactly sure where she went. Where ever I was, I must have existed. Or I wouldn't have been able to come back. So what happened in between?

Did I get sucked into an undiscovered black hole that exists, under the right conditions, in every person’s body? Was my personality so well hidden that it was indistinguishable from my surroundings, like a light brown mouse in a sand storm?

Even more interesting: I came back.

Without any focused thought or energy. No prayers or devil worship or telethons. I just reappeared one day in the hospital. It didn’t happen right after the medicine had fixed my heart. And it’s not like my ejection fraction increased dramatically right before I started singing again.

I am convinced that we’re a product of our circumstances. Yes, we have free will to be whoever we want to be, but we usually choose who we want to be based on our circumstances. I remember feeling scared as a little kid when we had a suicidal foster girl living in our home. She locked me in the bathroom with her and talked about cutting her wrists. At some point during the foster family experience (there were several living with us over a period of a few years), I wrote the Kids Helpline number on a piece of paper and hid it under a loose tile.

There was a really great girl who lived with us for a long time, someone I grew to love. But that good experience didn’t cancel out the really bad one. That fear as a child was so big that I still remember it, and I will never bring foster children – especially not teenagers – into our home. I would do other stuff to help, but never that.

Free choice is a tricky concept; maybe even an illusion. I didn’t want to disappear. I wanted to be the girl who sings in the shower, the girl who is trying to be an author. I didn’t have a choice.

I think, like most things in this world, reality is somewhere in between; not completely free will and not entirely random circumstance.

One illness, one misdiagnosis, one disappearing act and one blog later, I think personality is more like the synapses than the neurons. We don’t simply think our way into the person we become. It’s not something that just happens to us (most of the time). DNA, circumstance and free will meet together in that infinite space between to form personality.

I know I can’t control my circumstance, so I know that I may wake up tomorrow as the girl who doesn’t sing in the shower. But I can hope that I am never lost again.

Survival Mode

I didn’t realise it at the time, but when I was depressed and sick, I was struggling to survive.

Not in the same way K’naan sings about in his song Waving’ Flag (So we struggling; fighting to eat/And we wondering when we’ll be free).

Because my basic needs were met, my struggle was existential. I wasn’t sure if I could live with the pain or be a good mom. I was faced with redefining myself when I lost my ability to write. Oddly, I turned to material things to ease my emotional turmoil.

I bought a lot of stuff we didn’t need. We ate in restaurants at least three times a week. When we ate at home, it was steaks on the barbeque and mini potatoes with the perfect pre-packaged spices. I stopped drinking beer and starting drinking Yellow Tail. I used expensive face scrubs and wore Vans.

My new attitude toward the finer things came gradually. I didn’t throw out my plain black running shoes thinking I would replace them with something more expensive, just shoes that worked. But when I got to the store, after a long, hard week of working while exhausted, I had an epiphany.

Why not get the Vans? I deserve a little something for all I do.

Did I go for the stuff because it was there, because I thought it would make me feel better, or because I was too fucking tired to deal with my emotions?

Day after day, work was hard and I deserved to get something for the money I was earning. Something more than my roof and Kraft Dinner in a pot. Each day I made a choice. Before long, I was making the same choice every day, and having wieners for dinner just seemed less than I deserved.

I didn’t go without. I didn’t think I should.

Now, I wasn’t going too crazy – I kept it within my means. I wasn’t buying boats or million dollar houses or cars I couldn’t afford. But we went to the movies when we wanted to and I bought every hardcover I wanted to read.

Consumption consumed me; it became my life without writing, without hope, without joy. Stuff was my happiness, because I didn’t think I could be happy with a progressive illness that attacked my mind and body.

I think we all do it on one scale or another. I think it becomes a problem before we realise it.

The worst thing about consuming my way to happiness was that it didn’t work. A wine and steak dinner never made me feel taken care of or safe. The temporary comfort that stuff brought me was just enough to keep me wanting more. It was easy, mindless and always in my face.

Even shells of people are able to buy shoes.

You; Me

I don’t think my depression caused my illness. In fact, I actually think that my illness was, in part, responsible for my depression.

I was whacked up the side of the head with Dr. H.C.’s diagnosis not long after we found out my mom-in-law had Leukemia. Fibromyalgia has no cure, no reliable treatment and no guarantee that it won’t get worse and worse year after year.

Young woman should be dreaming about sexy lovers and careers and babies, not wondering if a life-long sickness would make it impossible to enjoy any of those things.

When I was first diagnosed with Fibro, I spent hours questioning my capabilities as a mom. How much would my fatigue interfere with a child’s life? What would she have to give up to take care of me? I agonized over this question: is it fair to knowingly bring a baby into a family with a sick mom? Is it really fair? Would she have a good life?

Don’t get me wrong, I’m not saying that all kids with sick parents don’t have good lives. But I’m sure things like soccer and ballet and weekend road trips to see grandpa are difficult or impossible.

So, fear + long, hopeless road + feeling powerless = depression.

When I was depressed, I wouldn’t have labelled it as depression; I would have said that I was sad. But looking back, I know that I was actually depressed.

Everything was coloured by my sad, angry, and eventually bitter point of view. I had emotional heartburn. The fire that shot out if my mouth burned a path through my world.

The fire created a barrier between me and the people in my life. At the time, the barrier made me feel safe, but after thinking about it for a while, I’ve come to realise that isolation is a bit like not existing at all.

At the very beginning of this blog, I wrote “Intelligence, in the real world, is measured by the ability to communicate”. Really, our entire life is about communicating. We don’t exist without a connection to the people around us.

If we had nobody to talk to all day, I think we would lose our voices. If we had nobody to share our love and hate and fear and hope with, those things would also cease to exist. Without a you, there is no me.

That’s why my isolation, even though it was partially self-induced, was the most tragic part of my sick years. I didn’t really exist.

What do you think?

Minding the Ship

I’ve been struggling with the idea of a mind-body connection since my mother-in-law was diagnosed with Leukemia.


Some people believe we can control our bodies with our minds. What do you think?

Here’s what I know:

My mom-in-law didn’t think her way into sickness and she couldn’t think her way out. I know for sure because she was a god damned inspiration to other cancer patients in the hospital. She was out of bed every day, carting her IV pole around the halls, encouraging others to hold on through the really rough days and to get out of bed on the not-so-bad days.

The cancer went into remission, but then it came back and it never went away. She didn’t do anything to bring the Leukemia back, or to get it in the first place. She didn’t control her body with her thoughts.

I also didn’t think my way into cardiomyopathy. I did live with a heavy heart for years. I was depressed. But I don’t believe my negative thoughts brought on my illness. It was purely a coincidence – something I spent too much time thinking about because I wanted to have some illusion of control over my situation.

The atoms in my body were not rallied into good or bad health by my thoughts, fears or desires.

I didn’t get better by thinking positive thoughts; I took drugs and I got lucky. I was just as depressed when I was diagnosed as when I was taken off the pills. Happiness came after the good news.

What do you think? Am I bitter or missing something? Am I on the right track? Do you think you can control your body with your mind? Did good thoughts bring you health? Bad thoughts bring you sickness?

Anxiety vs Reason

Two amazing things happened at the same time: health and pregnancy.

I had faith that I would have enough energy to keep up with the family we were starting. My heart was light and strong.

At the beginning of my pregnancy I worried more than most soon-to-be-first-moms. Every missed beat was followed by a rumbling through my chest. Because hearts pump the blood that carries oxygen, I had some anxious moments wondering if the baby in my belly was getting enough to survive.

I asked my doctor, instead of obsessing, and I trusted her answer. Deep breathing calmed me down on several levels.

Since diagnosed with cardiomyopathy, I have been the luckiest girl in the world. My heart was fixed with medication, not surgery or a transplant. I am alive and captivated by life. We got pregnant quickly.

I also had an amazing, easy pregnancy up until the very end.

No morning sickness, just a little nausea at night; no trouble sleeping in the first or second trimester, just weird dreams about the huge upcoming change; no hemorrhoids or swollen feet or hairy nipples.

And the baby did great, too, in my belly. Every ultrasound showed movement and all the good stuff you’re supposed to see in ultrasounds.

Yoga kept me focused, limber and relaxed. If you haven’t tried it, try it. Even when things started to get a bit weird, yoga helped me keep it together.

Suddenly, at the end of my perfect pregnancy, I wasn’t peeing as much as I should have been, I started gaining about five pounds a week and my blood pressure was up every other prenatal check. By my thirty-eighth week, my face was so fat that I could hardly find my eyes. And those thin ankles I was telling you about could no longer fit into my boots.

I wasn’t worried though, because the baby was still doing great. I kind of thought I had been getting off light up until that point; I was just paying my dues.

Sometimes reason keeps you moving, and sometimes it trips you up.

You're Special: Crib Notes

This is the second part in a series.

I collect money all day long. Every once in a while, almost everyone I speak with in a day lies about making a payment. That day was Friday.

First thing in the morning I was bullied mafia-wife-style by a real estate agent who had already lied twice about paying her bill. My next few clients were really mean. And then there was the young woman who had not paid her bill since she had become a client, had already lied about paying it three times, and still wanted her service back.

It went on and on all morning, and it started again after lunch. By mid-afternoon I was tense and grumpy. There was no doubt in my mind that the next client would try to sell me a load of shit, too. Natalie, I think, was the next client. She told me the last guy promised to credit some charges, but didn’t do it.

Yeah right, Natalie, I thought. That’s a common lie. Her account didn’t show that promise, so I assumed she was just another Friday client.

Well, I asked the guy who talked to her last, and it turns out I was wrong. Natalie wasn’t lying.

It took me half a day to throw out my basic philosophy about humans. I’m pretty committed to the fact that people are basically good, and every other day last week solidified that fact. Four hours of shitty people trying to take advantage of the system and get what they want without doing what they should have and I forgot all about the other guys.

Specialists must have heard lies, too. People lie to doctors for all different reasons: guilt, fear, stupidity and ignorance are just a few.

I bet they have days filled with lie after lie. You’d be screwed if you were the first appointment after lunch. But it’s one thing to assume a client is lying about money, something else entirely to assume a patient is lying; the stakes are much different.

So how do you cut through all of the human bullshit that even specialists can’t cure to get the treatment you need?

It’s hit or miss, truthfully. There’s no foolproof way. I know that sucks, considering we may be talking about life or death. There is one thing that may help if you can pull it off when you’re sick and dead tired.

Be prepared, but take his cues. I’ve read articles that insist writing a list of symptoms is the best way to get better. Those articles encourage you to take the list to your appointments. Some even suggest making a copy for the doctor to keep.

Here’s the thing about that approach: it works for some doctors and not for others. A doctor told me that patients who walk through the door with lists are considered hypochondriacs or liars by some.

If you run into that doctor, especially on a bad day, you’re not going to get what you need if you start your relationship by reading from a list. So, write a list, but keep it in your pocket. Concentrate on connecting with the doctor as a human.

Ask your advocate to help you remember the symptoms if you have a bad memory. Only take the list out as a last resort.

Confidence

The longer I was sick, the harder it was to imagine being well. Remembering healthy Jenn was more imagination than memory because I was so far from it, in both time and space.

As I began to resign to a life of understanding simple ideas only after a replay, I pulled away from my family and friends. Only one person believed that my brain symptoms were caused by my heart: my family doctor. Dr. Heart thought it had more to do with Fibro than anything.

So I thought that even if my heart was fixable, I would still be stupid.

I couldn’t write when I couldn’t connect one simple idea to another. The skill I had was gone; and my dream was out of reach. I was heartbroken.

At a certain point, after being lost in a story for a long time and finding no way to get my thoughts across, I realised that it was out of my control. I couldn’t write well enough to fake it with good editing. My brain just didn’t work the way it had before I was sick.

Unintentional-existential-crisis-mode kicked in. Who is a writer who can’t write? Useless.

Okay, if a wordless writer is useless, I reasoned, then I have to become someone else. My parents always told me that I could be whatever I want to be. Who did I want to be?

I didn’t want to be sick, but my world was defined by cardiomyopathy and Fibro. They were part of the new Jenn. I wasn’t sure if I could be more. And as I was trying to figure out my new life and my new mind, I couldn’t connect with the world.

Never mind the fact that I felt like I was living under water while my friends and family were living on land; change is hard for relationships. Ambiguity is worse. When there is nothing to confide in people, it’s hard to connect.

Phoebe: Want to go to a rock concert tonight?

Jenn: I don’t know.

Phoebe: Are you interested in rock climbing?

Jenn: I don’t know.

I was so focused on making a new life for myself, I never imagined that I would wake up in the hospital one day pretty much back to normal. My mind couldn’t dream up a story with an ending like that.

Just Jenn

I spent a lot of time in that sleep study lab because it was the Heart Function Clinic by day.

Every month for three months, and then every other month after that, I walked through the hospital doors with my heart in my throat, wondering if it would be the month I got the bad news. I thought I'd have to have surgery. It never occurred to me that the bad news was over.

They kept track of my weight because swelling is a bad sign with cardiomyopathy. After I weighed-in at the start of each appointment, they hooked me up to the ECG machine.

I had to get undressed in one of the sleep labs, put a hospital gown on backwards and lay down on the bed. When Nurse Heart came in, she would stick about five suction-cup-thingies on my chest, stomach and ankles, and then plug them into the wires that fed my heartbeat to the fancy machine.

If the printout looked like a mountain range with peaks destroyed by a crashing plane, then I still had PVCs. As I laid on the bed, waiting for Nurse Heart, I would wish the pilot had finally checked his engines before boarding his plane, but those flat mountains stayed with me for a while.

And then I’d have to tell Nurse Heart how many pillows I slept on and if I had been out of breath enough at night to wake up. She would take my blood pressure while I sat on the bed, and then again when I stood up.

Dr. Heart would listen to my chest, check my ankles for swelling and ask me the same questions.

They were both really good at soothing my fears when I was brave enough to talk about them. Even if there wasn’t an answer, Dr. Heart had a way of focusing on the now and on the good possibilities.

He was never impatient with me or dismissive. I didn’t know him before the PVC discovery, but I think he’s the kind of guy who would have treated me with respect no matter what.

Cardiomyopathy changed the way many people treated me. Suddenly, I wasn’t wasting their time.

Since I was diagnosed, doctors have been calm and sympathetic. The lab techs taking my blood, the receptionists at the cardiogram clinic and the volunteers at the Heart Function Clinic have all been extra-nice.

Friends and family members who knew about my heart got really serious about my health. The light well-that-sucks-but-at-least-you-won’t-die attitude was abruptly changed to an oh-shit-this-is-not-good attitude.

People were worried; people were just-in-case-nice. As in, just in case you die; just in case you’re life-changing sick.

I wanted to have a life outside of nice and away from the hospital. When I took off the gown and didn’t talk about it, I was just Jenn.

The Downside of Health

I get a little nervous every time my heart skips a beat.

When I’m just sitting at my desk and my heart starts acting wonky like it did the other day, I start thinking about the worst case scenario.

What if my heart is messed up again? What if the fix was only temporary and not effective anymore?

If I knew that I was going to be sick again in a year or two I would live a bit differently.

I would go to Ireland this summer to see where my grandpa’s family came from. Then I would fly over to France, Spain, Italy, Switzerland, and other cool countries in the area.

I would push myself harder on the treadmill, get to a run faster.

I would get a tattoo of a heart somewhere on my body. Maybe I should do that one anyway.

If I thought my sickness would kill me, I would quit my job to spend every day with my daughter, and my husband would hear cheesy love proclamations twice a day. Why can’t I do that now?

Knowing how hard it was to think when my heart was sick, I would get off my ass and re-write my second novel. I shouldn’t need the fear of losing my wits to do that. But I would be less afraid of looking like an idiot, and more afraid of losing my chance.

Here’s the thing: I could get sick again. It might not even be my heart next time. In fact, I will get sick eventually and die. But I’m feeling a little complacent these days. I’ve lost the edge that came with finally being healthy. Health is expected now, just two years after maybe never being healthy again.

Now and Then

Last night I went dancing for the first time in three years. It was so much fun, but definitely won’t become part of my weekly routine.

It’s never been my scene, and I really don’t fit in there now that I’m a new mom. When my friend and I first got to the bar there were two glasses on the dance floor. I picked them up and put them on the ledge.

Instead of cheering for the girl who climbed on the table to dance, I was worried that she would snap a heel and fall on her face. The bouncer pulled her down before she killed herself.

My sense of humour doesn’t translate well on the dance floor, either. I didn’t get any laughs when I cast a line to reel people in. I thought it was hilarious!

Don’t even ask what I was wearing.

I’m cool with the fact that I’m not invited to the Swanky Club for being so bar-awesome. It’s not me, but every once in a while I like to have that kind of fun.

If I wasn’t cool with that, I could work hard to fit in. I could buy bar clothes and learn how to put on make-up. I could practice dancing in my spare time. I could look up some lyrics online. I might never become the swankiest club hopper, but after a while I would be a clubber.

That’s what makes it difficult to know who people are; who they really are.

Am I the person that I am every day, or who I am today? Was I a different girl when I was sick, because I was sick for so long that I became that person; or am I the healthy woman, because it’s basically the person I started out as?

Maybe I’m a woman who used to be sick, because cardiomyopathy changed me just enough to be considered a major life event. I sing in the shower again now that I’m healthy. Is that the difference between happy and sad Jenn?

Am I who I’m trying to be, who I want to be, or who I am right now? Am I my past? My feelings? My thoughts?

I wasn’t myself for seven years. That’s a long time to be lost. I started a few new jobs, made friends, wrote a book, bought a house, got healthy and had a baby. If I wasn’t me that whole time, who was I?

Does that decade of my life count as a night-at-the-bar-type experience?

Face It, Kiddo

Can you give up on anything if you’re still alive?

That girl who sang in the shower couldn’t sleep at night unless the ideas that had filled her head all day were on paper. That woman who woke up in the hospital hadn’t written more than a grocery list in years.

I had given up on my dream; my way of understanding the universe. Partly because writing had become really hard for me and mostly because I lost confidence.

There comes a point, at least I thought so for a few years, when you have to face reality. I finished a novel when I was sick, dressed it up and sent it out into the world. Not surprisingly, it was rejected. The feedback I got was disheartening.

“I just don’t love it enough.”

Vague and brutal. Obviously I missed the mark. Unfortunately, I was too stupid to figure out what the mark was, and after a few more rejections, I gave up. I knew the novel had to be re-written, but I didn’t think I could do it. I said to myself:

It’s gone.

You’re not that person anymore.

You might never be well enough to get it again.

And I started to believe those things. Really, I could barely think straight most days, so it made sense. I thought I had reached ‘face time’. As in, time to face the facts, kiddo. Grow up, start a career, get serious. Time to stop dreaming.

But life isn’t linear like many novels. Life is marvelous and unexpected and beautiful.

My life zig-zags and loops back, and at one point it was a series of random dashes. Writing was a myth when I didn’t have the brain power to create a clear sentence.

I’m slowly gathering the courage that I need to face the myth, because I won’t truly give up until I’m dead.

Work It Out

Exercise seemed impossible when I was sick.

My simple stationary bike taunted me every night after work. Eight hours of sitting at a desk left me too exhausted to cook dinner and do the dishes, but I was supposed to find enough energy to work out. Whenever I’d walk by the bike to sit on the couch, I would hear my doctor’s voice.

You should get thirty minutes of exercise a day. At the very least.

I felt guilty when I didn’t get on the bike; like I wasn’t doing everything I could to get well. So, more often than not, I’d peddle as hard and fast as I could for as long as I could stand it. I usually lasted ten minutes at the lowest tension.

My legs were always heavy as hell about half way through my pathetic attempts at cardio. And by the end, I was winded and red-faced and when I walked to the couch to rest, it felt like industrial mop buckets filled with water were strapped to my feet.

There were nights I resisted the pointless exercise. By the end of the week, when my fatigue had glazed over me and I was more zombie than human, I looked at the bike, heard the voice and replied, fuck it. It can wait. Rest is more important right now.

Working out was torture. Now that I’m well, I look forward to working up a sweat on my treadmill. Not because I’m a fitness freak, but because I can. I feel exhilarated after a forty-five minute stride. It’s amazing.

I have a small, plastic, anatomically correct heart hanging from my treadmill to remind me why I walk. I’m working up to a full on run. I want to put as much distance between the sick me and the well me as possible. I want to run while I can.

At A Loss

Some people are social butterflies. I am a snail. Or maybe a tortoise. I’m not slimy, but I’m not convinced that slow and steady wins the race, either.

My misguided philosophy as a teen was shit or be shat on. Don’t steal that; I want to put it on a t-shirt. The attitude served me well in grade nine when we were all sizing each other up. Looking back, I see why adults tried to enlighten me about the colour grey.

Grey is beautiful. It makes my eyes pop. And there’s that whole vast-world-between-black-and-white thing, too. We all live there, though we don’t always know it or like it. Murder can be self-defence, stolen food can be fed to hungry children and adultery can stem from a loveless marriage.

Grey can be dark. It’s why gay couples are still denied the same rights as other couples in many parts of the world; it is racism passed down from generation to generation; and women in burkas.

Those abstract ideas and those moral decisions, easily debated over coffee, were the closest I got to grey in my teens. I never had to shoot a gun in self-defence or fear that going bare-faced would evoke the inevitable lust of a man.

I had the energy to think about that stuff because I thought daily life was black and white. She was a bitch to me, so I’ll be a bitch to her. He lied to me, I have to dump him. I skipped too many afternoon classes and I was kicked out of biology.

Then, on the cusp of adulthood, I got sick. A grey-green twister ripped through my life, pulled me into the air and kept me suspended for years. On my best days, I didn’t have the energy to maintain a social life and on my worst days, I didn’t have the capacity to understand intentions. It was hard to make new friends.

I’ve always been a tortoise, though, so I can’t blame my illness for that, just for the stagnant years in my twenties. I was a bookworm, not a hop scotch princess. And when I was seventeen, my girlfriend told a woman that Biggie’s song ‘Me and My Bitch’ was about a dog. I whispered to her, “really?” She rolled her eyes and answered, “ No, not really, Jenn.”

I had a long way to go before I got sick, and I’m way behind now that I’m better.

The twister left me at a loss. My teen strategies are pathetic and ineffective. When I’m insulted, I know snide comments might announce my frustration and possibly make me feel better, but won’t resolve anything. The urge to insult back is the karma crusader in me. Since I vowed to fold the cape, I have to come up with a different strategy.

Grey currently represents a mystery illness that takes away my brain and body functions one after the other. I am terrified to go back into that dark funnel. But I’m not sure that black and white exist.

One Lifetime

I could have died.

Would have died if I was born only eighty-one years earlier. Maybe even fifty years sooner. The technology to diagnose my problem was invented in 1924. One of the medications that saved me was released to the public in 1958.

It would have been a slow and painful death. I would have spent my last months feeling terrified and alone and depressed.

And if I had died from the sickness that had eluded doctors for so long, I would have missed my chance at coming close to death again.

Knock knock.

Who’s there?

You know who it is.

It’s weird. All the time I was sick, I never once thought about dying until I was properly diagnosed. It didn’t feel like that kind of illness. Plus, I was stuck on the MS possibility for a while.

So, I could have died. It’s something I think about before I fall asleep some nights. Sometimes, on those nights, I have nightmares - not necessarily about death, but about situations that fill me with anxiety. Fear dreams. Big fears.

The truth is, given the technology that exists today, and the level of care available, the only danger of death would have been going for a few more years without diagnosis. I was much more likely to have died shortly after I was welcomed back to Healthy Town. (I’ll get to that later.)

But if I was born eighty-one years earlier, I would have died for sure.

It sounds like a long time ago, if you don’t consider how long the earth has been around, or how long we live these days. One lifetime makes a huge difference.

Makes me wonder what my children will see in their lifetime.

Cure for all cancers? At least breast cancer. Cure for AIDS? A vaccine for HIV is in the works. Cure for MS? Possibly. Gene manipulation to avoid progressive disease completely, before symptoms can even appear? I think so.

Thoughts and Questions

Is it weird that I consciously make decisions on an hourly basis to stay in line with my morals, but also admit that I am a dirty liar?

Technically, admitting my lies keeps me in line with my morals, though lying does not. These kind of details used to bug me, used to keep me up at night. I used to think so much, I had to make up characters and stories to occupy my mind and avoid insanity.

When I was sick, most of my thoughts were silenced. It didn’t happen suddenly. It certainly wasn’t dramatic. Because I was so tired all the time, I assumed the energy I used to spend on thinking about stories and morals was extra. My extra thoughts were pruned away.

But those thoughts were me. They came from me: my worries, my curiosities, my neuroses, my epiphanies. They lived in my mind. And then they were gone.

Am I my thoughts, or are my thoughts me?

This was the kind of question that I used to try to answer when I wasn’t creating characters that had their own problems. Yup, plenty of people would agree that I had extra thoughts.

Did those thoughts do me any good?

Yes and no. Yes, the thoughts gave shape to my personality. And no, sometimes it was too much and I just wanted the thoughts to stop, give me peace.

Eventually, after my thoughts had been few and necessary for so long, the peace came with extra thoughts, not when they temporarily went away. Now I am grateful for every creative thought, and I hope to keep it that way even when I want to scream because I’ve been awake in bed for hours.

Karma Crusader

After talking with friends and thinking seriously about my anger, I think I know why I haven’t fully let it go.

True, it doesn’t affect me like it used to, meaning I don’t physically feel the anger even when I spend so much time reliving the memories that I can taste the blood in my mouth as though I was biting my cheek hard enough to stifle an urge to lash out.

But as Helen pointed out, the lack of a physiological reaction to the anger doesn’t mean I’ve let it go. Somewhere in my cells, I'm housing anger toward Dr. HC and Dr. Second Opinion because , at the very least, their negligible diagnosis made it incredibly difficult for me to get the proper diagnosis, which put my life at risk.

This week, I was listening to a radio interview with Dan Ariely, the author of Predictably Irrational: The Hidden Forces That Shape Our Decisions. Ariely talked about an experiment in which one guy overpaid for an item with two different groups of people: one control group, and one group of people that were purposely annoyed by the guy right before he overpaid. (The guy took a call in the middle of the interaction and rudely made the people wait without acknowledging it). The first group gave him back the extra money most of the time; the second group kept the money most of the time.

Ariely said that people didn’t keep the money because they were dishonest, but because they were trying to restore some kind of karma. In other words, the guy who treated them badly didn’t deserve the break they would have given him by fixing his mistake (paying too much).

What he said resonated with me. Big time.

I’ll admit it here and now: I am a karma crusader. If I see a wrong, I think it’s my job to right it – especially if I feel someone is being treated unfairly. My style is a bit different than that of the people in the experiment. I wouldn’t have kept his money, because I don’t think that’s right and I consciously make decisions on an hourly basis to stay in line with my morals; but after he hung up the phone I would have made him wait a bit longer than he made me wait.

So yes, I spend too much time trying to restore balance and justice into the most insignificant events. Why? If I don’t, I hold on to the anger of being unfairly treated.

Before I heard this interview, I had just realised that I’m worried letting go of my anger will give the two specialists who messed up a free pass, and they will never have to answer for their actions. My first thought to resolve it, then, was to find a way to file a formal complaint against them. Maybe it would stop it from happening to others.

Thanks to Ariely, I think there is another solution. In most cases, I will fold up my cape and let karma figure things out without my help.

(Because Dr. HC may misdiagnose more people, I think I have to do more, but Dr. Second Opinion was just a jerk, as far as I'm concerned, so he will fall into the 'most cases' category)

Folding the cape means giving people a break for no reason at all, and especially when they don’t seem to deserve it. If I can dole out at least one break a day, I think I can change my life. And if you do it with me, we might be able to change the world.

Portable Fences

I’m finding it hard to write about anger.

I knew how to be angry, how to use it to keep going, and even how to direct it toward threats; but I didn’t sit down one day after being misdiagnosed and decide to get angry for all the benefits.

Anger was a reaction to a series of events that left me feeling almost hopeless. It’s an emotion that was hard for me to control. I let it consume me and affect many aspects of my life.

Somewhere between anger and depression, there was a great deal of self pity. Even though it was always tempered by the fact that my illness was not life-threatening, and I was learning too much about life-threatening illnesses to ignore the blessing, my pity and anger brought me to hurt people on occasion.

This is why it’s hard to write about. I feel awful for hurting people and embarrassed that I acted so disgusting some days.

I didn’t physically lash out. In some cases I was judgemental, in others plain mean, and most of the time my lack of interaction either directly or indirectly hurt friends and family. I carried a portable electric fence in my pocket. When I was angry, people knew.

To those that I hurt, I am sorry. I hope this journal gives you some insight into my actions, and I hope that you’ll give me a chance to connect with you if you haven’t already.

Carrying anger has been harmful. At the time, I didn’t know how to feel it only when it was useful and then let it go.

I’m not sure if I’m good at letting it go these days either. I’m still angry with Dr. Second Opinion and the other doctors who made me feel stupid and useless. But I can feel the anger without feeling the physical effects, like a heavy heartbeat and tense muscles and headaches.

Is that letting go?

Anger Loves Me

I think anger and depression are only separated by helplessness and hopelessness.

My illness and the doctors who misdiagnosed my illness made me feel helpless, but my anger gave me power in some situations, and knowing that I still had some power helped me remain hopeful that I would eventually find health again.

Though anger let me feel alive, there was only one time it actually helped me.

A few years ago I ran into a confrontational toughy in her mid-forties. Her fifteen-year-old beat-up Mercedes was parked at the pump of a small gas station. When I pulled up to the pump, I couldn’t get close enough because the Mercedes was hogging up the space. So I turned off my engine and waited for her to finish.

I watched her walk back from the store after paying for the gas and then get in her car. For some weird, possibly territorial reason, this woman aggressively gestured for me to back up so she wouldn’t have to reverse and go around my car.

Before sizing up the situation, which included the facts that the has-been party girl was bigger than me and had two male passengers, I shook my head and rolled my eyes. She hated the fact that I didn’t act as commanded. She got out of the car.

By this time, of course, my heart was pounding, but thanks to my flowing anger, I was ready for a fight.

This is another surreal moment in my life. As she approached the car I wasn’t sure what to expect. My window was open and my seat belt was on. She stood next to my car and got right in my face. She grabbed my door, her fingertips inside of my car. She called me out as if we were guests on Jerry Springer.

She expected to have the advantage by taking advantage of the element of surprise.

But I surprised her by undoing my seat belt and opening my door.

Honestly, I didn’t get out of my car to fight; I got out to protect myself. Years before this incident, I had seen a high school friend get attacked through a car window. And I really didn’t mean to hit her in the stomach with my car door when I threw it open. I was glowing with adrenaline and I had misjudged the space she had suddenly made between herself and my car when she saw me put my hand on the handle.

In thirty seconds, by instantly answering her call to fight, I turned the element of surprise around and threw it in her face. It wasn’t something that I thought out; it was just something I did because anger was at the ready.

She didn’t back down immediately, but she didn’t throw a punch either. She got back in her car after some face-saving encouragement from her friends, and then she reversed and drove around my car.

Luck played some part in getting me out of the situation without a broken nose and a criminal charge, but if I wasn’t regularly raging during that period in my life, I would have hesitated. I have no doubt that hesitation would have changed the outcome of that confrontation.

But living angry is hard on health and relationships.

It helped me stifle depression for a while and avoid one ass kicking. Was it worth it?

Has anger ever helped you?

Rage, Rage

When Dr. Second Opinion locked me into the Fibromyalgia diagnosis, I was trapped. His official word was the heavy canvas blanket that started to smother me.

Even though I knew, at the very least, that it wasn’t the whole story, I didn’t have the energy to fight two specialists. Energy was a scarce, barely renewable resource back then, and hope had just been listed as an endangered species.

True, I gave up before the physical exam was over, but when I got home that night, having put some distance between myself and that scoundrel, I could clearly see how he had wronged me. As the healthy, able-minded expert in our duo, Dr. Second Opinion was obligated to get the input that he required to make an informed decision.

He stabbed his fingertips into more than twenty points on my body without much response. He needed my input to make his diagnosis, but I stopped talking after the first three or four points. He didn’t even bother to acknowledge the fact that I had stopped answering his questions.

What was wrong with these two doctors? Why was the first one an idiot who just wanted to get me out of his office? Why was the second one an asshole who was more concerned about his relationship with the first doctor than with the health of a young woman?

When I stopped answering questions and started asking them, I got angry.

My hatred for these two specialists was the green that grew on me like moss. And allowing myself to feel rage for my own situation opened the gate to feeling rage for the Leukemia that was killing my mom-in-law.

A wave of rage filled the hole I was living in, floating me for quite a while.

The anger triggered a physiological response in my body: adrenaline rushed through my blood stream and my heart pounded. This raging energy gave me new life; and the ability to face a threat standing tall. As old-fashioned as our fight-or-flight defense mechanism is, it certainly isn’t obsolete.

My new found attitude had consequences, for sure, but for a time I felt unstoppable.

Fibromyalgia? Fibro-go-fuck-yourself.