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.

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.

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.