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.

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?

Life After Death

I don’t remember much about the day my daughter was born other than what I’ve already written.

Here’s what I’ve been told: I needed two bags of blood after hemorrhaging; I knew who I was but not where, so I had a CAT scan at three in the morning to check for signs of a stroke; and at some point during all of this, possibly because of the magnesium sulphate IV drip, my heart rate dropped to seven beats per minute.

Seven beats per minute.

One of my nurses was five months pregnant, and big enough for me to notice nothing except for the baby belly. The belly set me off when I wasn’t best friends with reality.

I had a nightmare that kept my blood pressure high for days. In my nightmare, the pregnant nurse handed me a pair of scissors and told me to cut my baby. She said that every baby who was born by c-section was only allowed to survive because another baby had been scarred or killed.

If I didn’t cut my baby another baby would die. It was the circle of life. A baby before mine had died to pave the way for us. It was our turn.

It was terrifying because I honestly believed that the nurse wanted me to cut my baby’s stomach open with scissors. The nurse who was in charge of my life in the ICU.

Tim stayed with me to keep me calm and rational. He sat in an uncomfortable armchair beside my bed until I fell asleep at night, and then he slept in the Quiet Room a few feet away. He was also there for our daughter, who was stuck in NICU while I was getting better.

He rubbed my head and told me jokes. He listened to my paranoid ramblings, took my fear seriously and helped me see what was real and what was not. He picked me up out of bed, put me in a wheelchair and brought me over to our baby whenever the nurses said my blood pressure was stable enough.

His love was the only thing that dispersed my fear long enough to lower my blood pressure. His effect on me was more powerful than the labetalol they were feeding me through IV.

How did I get to be so lucky?

When I was finally moved to the maternity ward after days in the ICU, my roommate was also moved from ICU. She had preeclampsia much earlier in her pregnancy than I did, and her baby was born way before term.

She was fine, but her baby would have to stay in NICU for weeks. Her story made me want to curl up beside her in her hospital bed and brush her bangs out of her eyes. She actually lived an hour north of the hospital, and she could only stay in her room for five days. After that, she had to find a hotel, or pay per day to use the hospital’s family house.

Her little preemie was fighting for his life, trying to use his underdeveloped lungs in the incubator next to our plump little baby. Our baby was perfect; she was whole.

My roommate had to listen to our baby cry and coo when we were able to bring her into our room. She had to listen to the lactation consultant give me breastfeeding tips. She was an uninvited guest to our joyous celebration while her little baby struggled down the hall. It must have been heartbreaking.

As for me, the luckiest girl in the world, I was the live, proud new mom to a perfect baby girl. And I woke up in the hospital basically the same girl I was before I was sick. I can’t tell you if it was the drugs, the detox effect of ICU, or some kind of near-death phenomenon that righted me.

I could have basically been right after the heart meds, but didn’t give myself enough time to fully adjust before getting pregnant. Or something else was happening.

Whatever it is, here I am, the luckiest girl in the world. My husband loves me unconditionally. My baby and I are alive. I am myself again.

Life after that experience has been amazing so far.

You're Special: ICU

This is the third part in a series. You can read the first part here, and the second here.

They wheeled me right to the ICU from the recovery room after our baby was born.

My experience in ICU is actually the beginning of a very traumatic time. I’ll get to that soon, but first I want to write about seeing a specialist while you’re in a hospital bed.

When you’re conscious and alert, it’s reasonable to shoot for goals like reading cues and writing lists. When you’re wheeled into a room on a stretcher, it’s not.

There isn’t much you can do to control the situation when you don’t know where you are. My situation, being in the ICU, was extreme. Sometimes people don’t ‘know where they are’ even when they literally know where they are.

If you’re so tired/confused/fucked up that you can’t contribute in any meaningful way to your exchanges with your specialists, I have one piece of advice:

Trust them.

For the most part, doctors are competent, caring people. They know the ramifications of their mistakes. They stuck it out in torturous med school because they want help people. They would rather shove their egos into a donkey’s ass, strap that donkey on a rocket and launch it into space on a crash course with the sun, than kill you.

They work long hours trying to figure out what is wrong. They give up time with their families to keep us alive.

Most people are good people; this includes specialists. Unless something in your gut says NO!, trust is a good thing. And good or bad, trust may be your only play when you aren’t conscious.

Just because I had a really bad experience with one of the seven specialists I saw doesn’t mean it’s something everyone should be on the lookout for. It won’t necessarily happen to you.

I learned a lot about the relationship between relaxation and getting healthy in the ICU. Trust starts with letting go, relaxing your fears and erasing those negative mind-tapes. Sometimes it’s easier when you don’t have any other choice.

Of course, I always had an advocate by my side. I was the luckiest girl in the world.

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.

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.

Dear Heart

Now that I’ve shared the depths of my depression, I want to share my joy.

For about a year and a half I was terrified that my heart wouldn’t be well enough to keep two people alive. I thought my chances of safely having a baby were slim.

I was wrong. I did get better and I did get pregnant. Sometimes life turns out better than you expect.

Before I knew everything was going to be okay, I spent a lot of energy trying to figure out what I did to break my heart. Nobody knows when my heart function started to falter.

When I was younger, I smoked and drank too much, as teenagers often do. I kept on smoking for ten years. Worse than either of those things, I held onto my bad feelings and internalized them. If sadness or anger were ever in short supply, I borrowed from my friends.

I lived with a heavy heart for years.

Seeing my heart on the ultrasound screen brought tears to my eyes because I knew I had neglected him and taken him for granted. I felt guilty for being unaware of my heart’s struggle, for adding to it.

In a mad bargain for wellness, I wrote my heart a letter. I asked for forgiveness. I promised to pay proper attention and to eat less salt. I told my heart that I would fend off stress if he would just keep pumping.

I’d like to believe he was listening.

Are you there sorrow? It's me, Jenn

When I was diagnosed with cardiomyopathy, Dr. Heart told me I had a thirty-three per cent chance of getting better, a thirty-three per cent chance of staying the same, and a thirty-three per cent chance of getting worse.

That left me with a good chance I wouldn’t have a strong enough heart to ever get pregnant. Hearts in pregnant bodies have to work harder than other hearts.

I stared at the glow-in-the-dark hands of my biological clock for about four months before writing this diary entry:

1:50 am – I am struggling with the possibility that my heart will never be able to handle pregnancy.

The waiting list for adoption is long. Baby = forever; five-year-old = five year wait.

Adopting a child from another country costs at least $25,000 - more than the down payment of our house. We’ll never have that kind of money.

1:54 am – I have to brace myself for the possibility that my heart cannot handle pregnancy. Otherwise, I might break down.

I am rigid. I wonder if this is related to my heart condition. I wonder if everything is somehow connected to my heart.

Tim’s right… this is ridiculous. I can’t use the limited information that I have about my body to hold myself hostage. There is still life to live. It’s not about waiting for test results. But it’s hard to ignore that flashing red light.

I’ve been cautious ever since the episode of ‘vertigo’ in the shower. This has possibly saved my life countless times. My body was systematically shutting down to stay safe. Survival instinct kicked in, stopped me from feeling too much and realising too much stress, because my heart is bogged down by stress.

In the end, my fail-safe will be total shut down.

Can death possibly be a survival mechanism?

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.

Don't be Afraid

When I was sick, angry and depressed, I felt lonely.

I wasn’t alone because I didn’t talk about it, though that didn’t help; I was alone because nobody close to me was going through the same thing.

My mother-in-law was sick in a much different way. There is no hemming and hawing about how real cancer is, or how deadly. It’s not something you fuck around with.

Fibromyalgia on the other hand...

People act funny when they know you’re sick. For the most part, they’re worried to say the wrong thing. Sometimes saying nothing is the wrong thing.

We live in a social world that’s hard to navigate under normal circumstances, and when you throw anger and depression and illness into the mix, it can seem impossible. We have our own experiences with depression and anger that colour our feelings and shape our actions. And we have either had encounters with sickness or not.

My grandma died of lung cancer a year after my mom-in-law died. As hard as it was to be back in a hospital room, it was harder to be in the waiting room. And in the future, though I’m not religious, it will be hard to be in a hospital chapel. Much harder to listen to last rites.

There was nothing easy about watching my grandma die, but my relationship with hospital rooms had already been negotiated, so there was one less thing to worry about.

Before I was sick, I suspected how lonely it would be, and now that I know, I’m less concerned with saying the wrong thing when someone I love is sick or angry or depressed.

If you’re afraid to reach out to your depressed daughter, or to your angry neighbour, don’t be. Even the tiniest gesture will give that person a moment of refuge from a world of loneliness. If you’re not sure what to say, start with ‘Hey’. If you normally say ‘Hey’ and nothing else, add a question like ‘How are you?’, and if you normally talk to them every day, but don’t discuss emotions, say something like, ‘Hey, you seem sad today.’ Later, you might add, ‘Is everything okay?’.

One day when she isn’t depressed, she may reach back.

Splinter of Hope

As I waited to find out what Dr. Second Opinion would say, I spun my hopes into had-to-bes.

When it came to silly issues like disputing a Fibromyalgia diagnosis, hopes weren’t real enough for me. They were flighty, unverifiable and worthy of pity. But when it came to serious issues like my mom-in-law’s struggle to survive Leukemia, hope was not only okay, it was required.

Eventually I did find hope in my own situation, but waiting for validation during the six months after my appointment with Dr. HC, I couldn’t afford another intangible in my world of unsubstantiated claims.

So hopes became facts. I hoped that Dr. HC was wrong and I searched for proof. According to the web, he had pressed on my muscles too hard, so the test had to be incorrect.

I wished to know what was happening to my body. According to the web, the symptoms had to mean MS.

Even my mind, which was not working at full capacity, was capable of skewing the facts to create a world I could live with. Not that I thought MS would be the ultimate outcome. But it would be a solid diagnosis with real treatments.

As I waited I was getting worse. I couldn’t type all day at work without wearing arm braces. Honestly, they didn’t help much, but I figured it was better than nothing.

I had a headache all the time. All the time. I went to bed with a headache and I woke up with one, and there was no relief in between. Often the pain would graduate from the normal low grade ache to a pounding, all-encompassing mess.

Sleeping offered no real rest. I slept at least eight hours a night, but it wasn’t restoring my energy. Waking up most days was depressing. I was still tired, and it felt like my body had been struggling overnight. Some mornings I felt like I had just run a marathon.

The fact that sleep didn't restore me made going to bed pointless, but I did it. And getting up exhausted was tiring, but I did it. There was nothing else to do.

I was terrified to find out what was really wrong with my body and at the same time, I was scared to never know. In an effort to keep fear from collapsing me, I had to find hope somewhere.

Dr. Second Opinion became my pastor, even though I hadn’t met him yet. All of my faith was invested in a true diagnosis, and he was going to guide me there. Not a wish, a fact. Believe it and it is true.

In this way, hope became a thin metal rod that slid through my tab-top spine, holding me straight and facing forward.