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?

One Last Karma Crusade

Dear Dr. Hope Crusher,

CC: Medical Disciplinary Board

Your misdiagnosis really messed me up. I want you to read this so you don’t do the same thing to someone else.

I was referred to you because I had pain in both of my arms for no obvious reason. My family doctor thought I had arthritis, but you glanced at my file as you walked down the hall toward the examination room and decided that I had Fibromyalgia.

It had been just three months since the pain began. There was no pain in the lower half of my body at that time. You jabbed your fingers into my muscles hard enough to hurt me everywhere, not only on the tender spots, but you ignored the fact it was you who was hurting me, not my illness.

You handed me a few photocopied notes and diagrams about stretching and guided me out the door.

There was never any follow up. You didn’t recommend more tests – not even a sleep study – or more doctors. You only saw me once. My family doctor had to prescribe me pills and check in with me and help me manage my day-to-day pain and fatigue.

Because you had incorrectly labelled me with Fibromyalgia, other doctors either thought I was a hypochondriac or a lost cause, and I went for years without finding out what was really wrong with me.

After years of no sleep, even while taking the sleeping pills recommended for patients with Fibromyalgia, I got fed up and demanded a sleep study. Luck for me, I had the energy that day to advocate for health.

The sleep study uncovered a major issue with my heart. I know you’re not a cardiologist, but you’re probably smart enough to realise that cardiomyopathy causes fatigue.

Turns out all I needed were beta blockers and ACE inhibitors to make me feel better. I’m not exhausted or achey or stiff anymore, Dr. H.C. I have been living well without medication for a very long time now, Dr. H.C.

If you had taken the time to diagnose me properly, instead of trying to stuff me into a neat box and then throw me out the door, you would have saved me a lot of heartache.

If you practice medicine every day the way you practiced medicine with me that day, you are a disgrace. You should put your medical licence in that box, set it on fire and then go back to school to become a Wall Street broker.

I’d rather you fuck with my money than my life.

With all my heart,

Jenn

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.

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.

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?

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.

You Must Have Been High

The first person outside my family to call me a hippie was my high school History teacher. He was referring to my spirit.

Some hear hippie and think pothead. Co-workers who didn’t know me well may have gotten that impression, though they never said it to my face. I was a laid-back, peace-loving girl. All that was missing was a perma-smile. They decorated my pigeonhole when I started wearing sunglasses to work and forgetting my words.

Little did they know, the sunglasses were shielding my eyes from the burning white computer screen that I stared at for eight hours a day, five days a week. My eyes were super-sensitive to the light.

I’ve always been peace-loving, but the laid-back Jenn was born from necessity. It was a combination of drugs and systematic shut down. My body couldn’t handle too much stress, so I started ignoring it. Yup, just like that. With the help of my dad and my husband.

My dad told me to asses a situation by asking if it was going to matter in five years. Wow. That helped me big time.

My husband has always been an easy-going guy. Some days it takes mountains to move him. A bit of his mindset has rubbed off. He’s also the funniest guy I know, and laughing until pee almost comes out is a great way to forget stress.

The off-label pain meds messed with my chemistry just enough to keep me on an even keel until I was diagnosed by Dr. Heart. Unfortunately, I had to switch it up a bit at that point, and I got stuck taking another, not-so-good off-label pill that altered my brain function a little too much for my liking.

When I started taking beta-blockers to fix my heart, I would have stayed calm if a rhino charged me. Oddly enough to those who don’t believe cardiomyopathy causes shoulder pain, my muscles have never been more relaxed than when I was on those meds.

I was a hippie-at-heart even as my heart was only flesh and blood, pumping with the tenacity required to keep me alive; because my brain was lead by my heart into a calm existence.

Because my cardiomyopathy diagnosis didn’t automatically rule out Fibromyalgia, I was on pain meds and heart meds at the same time. And being over-medicated didn’t help me find my words.

Sometimes in the vein of doing no harm, harm is prolonged.

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?

Double Up

When I was diagnosed with cardiomyopathy my husband and I had a heart-to-heart with Dr. Heart about babies.

Now, I`ve never been the girl who gets gushy over babies.  They cry, they puke, they poo and they can`t make jokes.  I was convinced I would be the one to break a baby if I had to hold her.  Despite all of that, I wanted my own, but not until I was about thirty.

A few things changed since I made those plans.  My biological clock started ticking very softly when my mom-in-law was sick; we thought about starting our family so she could meet her grandbabies.  And when she was dying, we really thought about it. 

It turned out to be a good thing that we decided not to bump up our baby plans, because they didn`t find the cardiomyopathy until three months after she died.  If I got pregnant with a sick heart, I`m not sure we would have made it.

The clock got louder when I had my first snuggle with a baby.  He nuzzled into the hollow of my neck and I melted.  He was so beautiful and helpless, and he wanted me to love him.  Me.  With my past.  With my flaws.  My love was enough for this small baby.  And his love for me in that moment was so innocent and pure, with no guilt, no demands, no judgement. 

I didn`t know babies could show love until that moment.

The rapid tick-tock shocked me when Dr. Heart very gently told us that we could not get pregnant while I was taking my heart pills.  He asked what birth control we were currently using (The Pill), and told us why it was important to double-up (always use condoms or spermicidal foam as well).

The meds I needed to fix my heart were known to cause major birth defects, including under-developed skull, and could also cause foetal death.  My own heart pulled the plug on my clock.  But it was one of those old-fashioned wind-up clocks.  Daylight charged the glow-in-the-dark hands; it was the only thing I could see as I was trying to fall asleep every night.