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?

Gentle Calm

I wrote in my last blog entry that I wasn’t worried about the odd things that started happening near the end of my pregnancy. I was in good hands, being watched carefully. I was at the weekly check-up point. Everything was okay.

EERRRT, Hindsight yelled. Wrong answer.

Things change quickly in pregnancy. And it’s hard to see the bigger picture when you’re measuring day-to-day. Over and above that fact, my body doesn’t play by the rules.

So, at thirty-nine weeks pregnant, I drove myself thirty minutes down the highway for my prenatal appointment. I waddled into the office, a little out of breath and a lot exhausted. We discovered another five pounds in water weight when the nurse weighed me. My feet were white Shrek feet. My blood pressure was high.

My doctor was very calm. She didn’t tell me what the blood pressure numbers were, and I didn’t think to ask. She simply told me that I needed to go to the hospital straight away. Her voice was even and soothing when she explained that the nurses would check the baby with a non-stress test, and the on-duty OBGYN would check my cervix and decide whether or not to admit me and induce.

With a smile, she said I would more than likely be a mom in the next few days.

The receptionist offered to walk me to the hospital, but I didn’t want to leave my car in the wrong parking lot, so I drove. She told me later that she was really worried about me and the baby.

But when you’re that sick, people do everything possible to keep you from freaking out. Soft and gentle tones and facial expressions are a must for everyone with high blood pressure.

They were expecting me in the maternity ward. After they got me settled into a comfy green gown and onto an exam bed for the non-stress test, I called Tim. I was eerily calm myself, though only as a reflection of what I’d seen so far.

The baby was still doing great – no worries there. I was admitted into the only single room on the ward. In case you’re wondering, that is not a good sign, but I didn’t know it at the time. The single room happened to be right next to the nurse station.

They were monitoring my blood pressure every thirty minutes. Again, the nurses didn’t tell me how high it was, and I was too stunned to ask. The OBGYN decided to induce. He told me that it would be a long process, so it was okay for Tim to finish his day at work, pack our overnight bag (yes, I was unprepared), and then drive to the hospital.

When he got there, he saw the numbers on the blood pressure machine. 199 / 119 (with medication).

No wonder people were worried! Normal blood pressure is below 120 / 80, and hypertension is defined as blood pressure consistently higher than 140 / 90.

Preeclampsia is a serious complication that can result in the death of the mother and child. It can only be cured by giving birth. The good news: the baby was developed enough to make this a very attractive option. If I was diagnosed with preeclampsia before the baby was ready to survive outside of my uterus, we might have had to wait.

Also under the category of good news: I have no doubt that I would have died, maybe my baby too, if we weren’t in a hospital. As little as eight-five years ago, we also probably would have died.

What happened in the next few days is a blur, but I’ve pieced it together with some help.

Perfection

I’m going to jump right from sorrow to babies.

After a year of heart medication my ejection fraction went from 27 to normal, and I was less tired and less breathless.

Dr. Heart took me off the pills to see if my heart would pump well without assistance. I had to wait for six months before getting another MUGA scan to measure my heart function. Near the end of it I was getting insanely impatient.

The glaring green hands on my biological clock were killing me, but I had to wait for the green light.

Nurse Heart makes fun of me now for being so impatient. I thought Dr. Heart was slow-playing me, so I called to bump my test up a month. My plea worked.

All the anxiety in the world didn’t change the results of my test. (There goes the straightforward mind-body connection theory.) My heart passed and we threw the condoms in the garbage. I wish I had cut them up into little pieces and then burned them in a cathartic bonfire, or at least mailed them to a country with limited access to birth control; it would have made a great story.

We were lucky: we got right to it and got pregnant within three months of trying. I felt amazing. The shift from cautious to all-out-cardio quickly killed my breakable -complex.

And then I was back to fragile with a teeny tiny embryo in my belly. I was happy and comfortable; I couldn’t ask for anything more. My life was perfect. I didn’t feel completely healthy when I stopped taking the heart medication, but as soon as that embryo burrowed into my uterus lining, I started feeling better and better.

But it was a long journey. I was still classified as sick, because I was diagnosed with Fibro, and I still sometimes think this is the story of somebody with life-long health issues.

It got worse – scary worse – before I woke up in the hospital as a new person. I’ll tell you all about the bad stuff soon.

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.

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.

Face Time

Face Time is an interactive memoir about my terrifying decent into self-loathing and despair when I was diagnosed with two pretty rotten health issues. Don’t worry, though, it won’t be depressing. And like every good hard-knock life story, there’s a happy ending. Except in my case, there was a happy beginning, and I wouldn’t in any way classify it as a hard-knock life.

All I can promise you is a third-row ticket to the storytelling show about the incredible transformation that took place in my personality, and my mental and emotional states as I became sicker and sicker. Slowly, beat by beat and day by day, I became so unrecognizable to myself that I resigned to being someone else, and I didn’t realise exactly how much I had lost until I woke up one morning in the hospital, practically back to normal.

There’s lots you could be reading right now: fear-inducing reports of a plague, accusations of misappropriating tax-payer money, and charges of murder. This blog is not a news article about how to hang a yellow flag outside your door to signal quarantine. This is a story about losing control of my body and the toll it took. It’s the latest theory in mind-body connection based on my very unscientific research - my life.

But it’s more than that, too, because this is an interactive memoir. It will work if you comment on the posts and ask questions. Tell me what you want to know, and the answers will magically appear in future entries. For example, if you read about one of my many visits to a specialist, and you ask about the wait times in Canada, you may inspire an entry dedicated to my opinion that the benefits of universal health care far outweigh the drawbacks. I might even back it up with facts.

My goal is to create a memoir with your help that is richer and more accessible than the one I could write on my own. Let me know what you think of my first post.