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?

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 Heart is Yours

Some couples are always together.

I’ve heard tales of couples who lived an entire life together without spending one night apart. Stories like that always make me wonder about business trips. Does one partner follow the other on every business trip? Do the kids go too?

Maybe it’s an exaggeration. If not, it sounds a bit co-dependent; at the very least, it would be a logistic nightmare. Those stories never inspired a sense of awe or desire in me. Keep in mind, though, that I completed two years of college while living about one hour away from my boyfriend – the guy who is now my husband – so I know we can be apart and not fall apart, and I consider this an accomplishment.

Those facts aside, I’m pretty sure the night of the sleep study was the first night we had spent apart since I graduated from school.

That night, I marched up to the front door of the hospital with my pillow tucked under one arm and a knapsack packed with pills and pyjamas over my shoulder. I walked down the hall toward the sleep labs, unaware that this would be the first of many visits to those rooms.

I looked around the lab while I changed into my pyjamas. There was a hospital bed with a warm blanket and soft pillow. There were curtains on the window, a lamp and clock on the nightstand. The walls were painted a soft pink instead of the standard hospital green. No television. Oh, there was also a big video camera mounted in the corner of the room near the ceiling.

A nurse hooked me up to a machine that would monitor me throughout the night. There must have been twenty-five wires attached to me before she was done – leads to monitor my breathing, pulse, brain waves and sleep stages.

In the bathroom across the hall, I took my pain pills and my sleeping pills. A small monster stared at me as I brushed my teeth. White wires veined my long, dark hair. The wires stuck up from my scalp and then looped down toward my shoulders.

Little did I know, becoming that monster for one night was my first step back to wellness.

I slipped back across the hall in my socks and sat on the bed, testing the firmness of the mattress. With the lights off, the glow from the small lamp gave the room a homey feel. It was only 9pm, so I took a book out of my knapsack and gingerly laid my head on my pillow. The wires made it uncomfortable, but not unbearable.

Still, it was hard to concentrate on the novel. The results of the sleep study would be disclosed after about two weeks, around the same time that I was scheduled to see a neurologist, Dr. Brain, and possibly get a diagnosis of MS.

As anxiety crept into my veins, threatening to keep me awake all night, I closed my eyes and thought of my husband. We were apart that night, but my heart is always with him. The worries quieted and I soon fell asleep.

Thoughts and Questions

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

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

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

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

Am I my thoughts, or are my thoughts me?

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

Did those thoughts do me any good?

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

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

Pieces of Peace on Earth

I’m reading a novel called Sweetness in the Belly by Camilla Gibb. The main character is a white Muslim from Ethiopia.

Before this book, I’d only encountered the word Jihad in the news. I know the media is not objective, but there are still some things I hear and take for granted as true.

Since 2001, the talking heads have told me that the meaning of Jihad is holy war. They said terrorists had declared Jihad on us and innocent civilians in the Middle East.

I had no reason to think their definition of Jihad was wrong.

But in Sweetness in the Belly, one character describes Jihad differently. He says, “Jihad is the holy war we have within ourselves. That is the meaning below the surface. Our eternal struggle for purity... It’s the war of ascendance over our basal instincts. It has absolutely nothing to do with others.”

One of my ongoing psychological struggles is a struggle for peace.

Peace is not something that sticks around when located. It’s a state of being that comes piece by piece.

When I was sick and looking for a diagnosis that made sense to me, I was in a constant state of turmoil. In that state, I thought peace meant finding the answer.

Luckily I did find the answer, but when I didn’t know, I found peace in little pieces.

About a year after I started my first safety net job, I got a similar job with a better company. And a year or so after that, I landed a small promotion, which gave me the chance to do more writing and less typing.

Aside from the regular good feelings that come with being promoted, I honestly felt that my arms were saved thanks to the person who chose me to be on the new team.

By that time, even with the medication I was taking, my wrists and forearms and shoulders and neck were so stiff and sore that I didn’t know how much longer I could keep typing almost non-stop for eight hours a day, five days a week.

That was a pretty big little piece of peace for me. Even though it brought me no closer to solving the problem of my broken body, it changed my life because it helped with the pain. And I took time daily to appreciate my new peace. If you’re a co-worker, you might have seen me do this simply by smiling.

What does peace mean to you? Do you have any little pieces of peace you’d like to share in the spirit of the holidays?

Grateful for Great Things

Good health is a gift that I am thankful for every day. But after all I’ve been through, I’m still a little paranoid that my illness will come back. I shared that worry with my specialist during my last appointment.

If my life was a low-budget movie, his response would have been, "Janet, you’re healthy now."

In real life he basically said, Jenn, there are no guarantees.

That’s as good as it gets from here on out as far as health goes. And I’m lucky. Why? I’m not dead. I can walk and talk and think and dream. I recognize myself in the mirror. I can love.

There are great things that have come out of my awful journeys.

I know that I’m a fighter. I know that I am a good person. I know that I’m loved unconditionally.

I used to believe that we're only faced with challenges that we have the strength to deal with, as if life experience is paired with each of us by a match-maker like Heidi Fleiss. It was something that I wanted to believe because I wasn’t sure how much I could handle.

Now I know that it comes down to a choice.

There is peace in knowing.

Duh.

I wrote about the first time that I knew my body was messed up in my last entry, Getting the Grade, but I left out something important.

When my doctor was shinning the light in my eyes, and asking me to describe what had happened, I told her that I felt stupid. She pushed her lower eyelid closer to the upper lid, narrowing her focus, looked me square in the eyes and asked what that meant. If I could go back to the young me sitting on the examination table, I would whisper this in her ear:

Your ability to comprehend simple concepts, such as the different meanings of the word grave, as heard in a conversation, has suddenly and seriously slowed.

Instead, I kept repeating the word stupid, without conveying why it was a big deal. In my mind, telling her that I felt stupid was the same as telling her that I couldn’t think on my feet, and that it seemed to be connected to the vertigo.

That day, my stupidity was consuming and unshakable, but as the hours passed, my brain sped up enough to appear normal again. There were not many bad days like that. Most of the time, my disconnect came in starts and stops. Those days have been a mash up of senior moments, as the baby boomers say. Younger folks would just say, duh.

The moments were funny at first; harmless word mix-ups that could be contributed to fatigue or brain hiccups. Or a half-hearted attempt at humour. I might say: put your foot in your mittens, or: don’t look at me with those lips. Even washing my armpits with shampoo by mistake was funny.

Later, when my thoughts began to stutter, I was worried again. Worried again. Worried again. Worried. Worried. Sometimes, instead of just thinking the same few words over and over, I would imagine writing them out by hand. It was weird, but not something that fit perfectly into the symptoms of any disease that I could find online.

Every article I read about going to the doctor and finding a diagnosis mentioned listening to my gut. The advice was so obvious that I yelled, duh, every time. I had heard what my gut said and I had shared it with my doctor, but my illness wasn’t recognizable until it surfaced a bit more. I wish one of those articles had mentioned what a long, frustrating struggle the diagnostic process can be, and how convinced you might be that you’re a crazy freak before that process is over.

Getting the Grade

I got my first major clue to future health woes only months after I graduated from college. I was singing and dancing in the shower, feeling sorry for the guy in the next apartment who never sang out loud (oh, the weird ways I used to judge people to make myself feel good), and having a blast as I got ready for work. When it was time to belt out the chorus, I threw my head back and got really dizzy.

I stopped singing, which was probably heaven for my neighbour, and I stood there trying to steady myself. The bathroom was spinning. But it wasn’t moving in a circle, it was moving up, up, up, and then when it got to the highest point that I could see, the world moved down, down, down. Technically it would be better described as bouncing, I just couldn’t resist the cliché. As soon as my head went back, I knew that there was something seriously wrong with me, and when the room didn’t settle, it became more than a gut feeling.

I didn’t want to chance the forty-five minute commute, being off-kilter, so I called in sick and I made an appointment with my family doctor. She asked me questions and shone a bright light in my eyes. I told her that I had occasionally felt and heard a fizzing, ginger ale sound at the base of my skull, in case it was relevant, and she gave me the first well-that’s-not-good-look, and told me it was probably vertigo. I was given instructions to take it easy and to avoid long drives for a while.

When I talked to my boss later that afternoon, he asked me what I was going to do, because I had no STD or LTD. Honestly, I had to ask him what STD was. Short-term disability, he patiently explained. The temporary, low-paying job also offered no drug plan.

My world slowly stopped spinning. After the shower incident, things got back to normal pretty quickly, except I had a growing fear that my body was somehow fucked up. Proper fucked. As a safety net, I got a job with benefits, including STD. It was around this time that I tried to donate blood, and I wasn’t allowed because my pulse was unsteady. A few weeks after that, my doctor put her fingers on my wrist as she watched the second hand go around her wristwatch, and reassured me that everything was okay. There were a few missed beats, or PVCs, a completely normal occurrence in all healthy young women. Another worry quashed; no biggie after all.

Over the next eighteen months I forgot about the vertigo and the anxiety that had crept up so quickly. Happy to focus on regular things again, like starting a career, it was easy to ignore the gut feeling that I had way back then. My friends and family were also happy to move on. Who wants to focus on sickness? Even when my health issues resurfaced, the decline was mostly gradual, so I had lots of time to get used to each little problem, and so did my family. In fact, there was only one other big thing that brought me to the doctor’s office.

Things happened so slowly that I thought my body was just getting older, though I was in my early twenties. If my day-to-day health was mapped on a chart using a scale of one to ten, the line connecting the numbers would resemble a very slight slope, pretty much the opposite of a ski hill. When you looked at each day individually, there would be very little to indicate a serious illness; but looking back on the years, seeing the steady decline, it would be easy to know that something was wrong. We live day to day, not year to year. Measuring the grade is useless if you only have a day of data to go by. And comparing one day to the next can warp a sense of level ground.

The clues we get from daily life are less concrete than the ones we get after years of retrospect. My husband noticed a big difference in my attitude and my level of happiness before we knew I was sick, but he had no way of translating those changes into a diagnosis. It seemed more likely at the time that I was going through an existential crisis.

Nothing Tim could have done would have solved the mystery of my broken body - not even if he quit his job and followed me around with a pen and a pad of paper, jotting down everything he observed, and then analysed the lists every week. The rest of my family and friends had even less to go on, because I didn’t want to talk about feeling gross, even on my good days, when words were not so cruelly elusive. As humans, we are in charge of caring for each other, not fixing each other. People cared for me and that was enough, just like the way you care for your mom, Anonymous, is enough.

Thank you to Anonymous for this question: Why do we, as friends and family, not pay attention to the changes in a person till it’s too late? Is it because we do see change and ignore it because we have busy lives, or is it because our minds don't trigger the change until we have reason?

Up for Debate

If we met in the last seven years, you don’t know that I’m outspoken and confident. Based on what you’ve seen, you can’t guess that I thrive on rambunctious philosophical debate, because my participation in the debates dwindled as I lost my ability to track faced-paced conversations. Social cues that I had once picked up on from another room became mysterious to me, and I couldn’t find the words to explain concepts that made sense in my head. Jokes were elusive. It took me a while to realise that my thought process was slowing down.

I’m better now, but afraid to label myself one-hundred-per cent well, though all of my doctors have officially opened the gates to Healthy Town again. The deportation to Sickville was much more dramatic, which made my recovery feel a bit anti-climactic. I’ll vote for the next politician who runs on the platform that good health news should be delivered with a balloon bouquet and a singing bear quartet. Even smiley face stickers would be a start.

When I was sick, my life was divided into good and bad moments, and some of those moments would last for weeks. Bad days were marked by confusion and a complete loss of clarity. Some people describe it as being in a fog, but I’m not sure that analogy fully captures my experience. Being in a fog implies that the world is difficult to navigate. It was difficult for me to get around physically, mentally and emotionally, but that was more like a side effect. The main issue was connection. Some days, connecting five words together, and then connecting the words to each of their meanings and connotations was impossible, so I couldn’t participate in conversations, and gradually, I lost the tenuous connections that I had with people around me. The connection I used to have with words was how I defined myself, how I related to the world, how I understood life; and I shared that understanding with my friends by discussing and debating everything from gum to politics. So, the loss of connection was a loss of self. Another loss was my ability to write. Writing itself isn’t my sense of self, but it is part of how I make sense of the universe, and how I make sense of the universe is who I am. Make sense?

The tragedy of my bad days was the isolation. Word by word, my friends and family started speaking a new language, and I wasn’t smart enough to learn it. The foreign words became sentences and then paragraphs, and those paragraphs became days and weeks of loneliness. Instead of sharing my feelings, which was really hard without being able to find the words, I pushed people away. When I feel insecure, I need lots of space. I used to imagine twirling around in a grocery store like a mini twister with my arms stretched out on either side to protect my personal space. What was I afraid of? I was trying to hide the fact that I was suddenly struck stupid, because stupid people are treated differently. We’re dismissed.

Intelligence, in the real world, is measured by the ability to communicate, because even the smartest guy on the block is only smart in his head until he proves it. We judge others based on their grasp of language. Here’s an example: I was in the checkout line the other day with my baby girl and a lady behind us commented on how placid she seemed in her stroller. First of all, I’m still not used to the random and strange remarks that come from strangers now that I have a baby. Second of all, I thought she had said flaccid, which completely creeped me out. But once I asked her to repeat what she had sed, I wondered why she had used the word placid, instead of calm or peaceful. Did I judge her as better than me because she knew the proper use of a word that doesn’t come up often in small talk? Not really, but I bet you judged me for writing sed instead of said. You might have thought that I'm part of a younger generation, or you might have wondered if I’m qualified to write a blog. Don’t be ashamed, it’s all part of how we navigate the world. Even if you don’t consciously dismiss someone based on her grasp of language, connection comes from common ground; so if you know what SFW means, but she doesn’t, you can’t talk about SFW material.

It didn’t take too many bad days before I questioned my self-worth. Really, if you looked at a bottle of ketchup and called it mustard, or couldn’t call it anything, you would have doubts too. I’m trying to keep this light, so you don’t want to kill yourself right away, but I have to be honest, my illness was more than misnaming condiments. One of the most frightening experiences happened while I was driving. I had to pick up my sister and brother-in-law when their car broke down, and then drive them home. They had lived in their condo for about a year when this happened. I had been there several times, and I was very familiar with the area. But as I was driving that night, only blocks away from their driveway, I got lost. Suddenly the world looked different. I didn’t recognize the street for a split second. Luckily it all came back to me without any hoopla and everyone was fine. Well, they were fine, and we all got home safely, but I was scared. That never happened again, thankfully. I was sick for years before I was properly diagnosed, and during that time, I didn’t know if I would ever get better. I debated with myself about personality: is it who I am on the inside, or the me that I‘m able to share with the world? And then, after years of having a hard time understanding simple romantic comedy plots, I wondered if I could continue to define myself based on the past.

I battled with depression because in my lucid moments, I knew exactly what I had lost, and I thought that the person I used to be was gone forever. I knew that my good days would not last. It’s as heartbreaking as you imagine it to be – knowing you’re missing a fundamental piece of yourself, and being unable to get it back. I felt empathy for my grandfather, who, after three brain surgeries, was exhibiting signs of dementia. His surgeries and my sickness started around the same time. The dementia has now progressed, and he can no longer recognize me. In my eyes, he is a different man. He even has a different voice. But every once in a while, the grandpa I knew comes back. His voice, his facial expressions, and the twinkle of recognition are there suddenly, and then gone again in an instant. I know in those moments that he is aware of being lost, and I am thankful that those moments are short, because it’s painful.

The different challenges faced by my grandpa and I have sparked a curiosity about the way the brain works. After reading a bit about it, I learned that our brains are powered by chemical reactions. Brains have these things called neurons, which are close enough together to ‘talk’ to each other. The space between the neurons are called synapses, and they play an important role in getting the message across – the chemical is released from one neuron into that space, and then the other neuron reacts to the chemical and opens up to receive the message. I’m beginning to wonder if personality is more like the neurons or the space between them. I think it’s up for debate.

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.