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?

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.

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?

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?

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.

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.

My Doctor is a Hypochondriac

So there I was, barely held together with anger, on the verge of depression, in pain and exhausted. The pills the doctor had prescribed made me numb. Literally, the top two inches of my skin was desensitized by the drugs.

It was hard to advocate for myself in that state.

But I knew without a doubt that something undiscovered was happening in my body, and it was clear that nobody was willing to push for more tests after I was banished to Fibromyalgia Town.

I was getting worse, though. Waking up in the morning was depressing. The sleeping pills I took kept me asleep, but didn’t help me get the rest I needed to feel restored. I struggled to start each day when I felt like the previous day hadn’t ended. Some days I was too tired to get out of bed.

Those days pushed me to advocate for my health. I couldn’t accept that I would just get worse and worse and worse until who knows what. Until I became disabled permanently? Until I completely lost my mind?

No. I had to do something. So I went to my family doctor and pleaded with her. Because I was convinced at the time that I had MS, I asked her to send me for an MRI.

She told me, her voice full of conviction, that I didn’t have MS. She booked an MRI to humour me. I also asked her to send me for a sleep study. I figured something was wrong there. My doctor said the study would not confirm or dispel the Fibromyalgia diagnosis, but I didn’t care, I wanted to get some sleep.

Despite my doctor’s convincing tone, I thought the MRI would show MS. I was wrong.

However, it turned out that my demand for more tests would lead us to the right diagnosis in quite a roundabout way.

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?

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.