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?

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.

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.

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.

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.