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.

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.

The Second Opinion

Have you ever taken tab-top drapery, rod and all, and stood the whole contraption on its end? The material zips to the floor and it turns into a rod with nothing to hold up.

It was apparent from the beginning of my appointment with Dr. Second Opinion that he wasn’t interested in giving a second opinion at all. He thought I was wasting his time. He fully respected Dr. HC and his ability to diagnose Fibromyalgia. Another patient might second guess him one day.

I was worried when the speech he gave from behind his desk inferred that he held those beliefs, but I had not yet given up hope, because there was still the matter of an exam.

By this time I knew the pressure points off by heart. I was ready to shout out yeses and nos. I wanted to tell him that it hurt everywhere, not just at those points.

And then, as though he had asked Dr HC how to administer the test, he pressed as hard as Dr HC did. In that moment I was devastated. The power left my lungs in one relinquishing exhale, flattening my voice.

There was no reason to tell him anything because he was not listening. So he went about poking me like I was a fucking faulty doorbell and I stayed silent.

My lack of participation in the test didn’t dissuade him from announcing his confirmation of Dr. HC’s diagnosis. Because he blatantly ignored me and automatically took the other specialist’s word as if it were a message from the cosmos itself, Dr. Second Opinion went from pastor to perpetrator in less than twenty minutes.

I took a chance asking for a second opinion and I lost. Now that two specialists had diagnosed me with Fibromyalgia, nobody would dare dispute it. Not even me. In public.

This moment changed me.

The people who could help me could not hear me; and my body was speaking to me in a foreign language, one even more incomprehensible than the words that didn’t make sense anymore.

Under the thumb of Dr. Second Opinion, I became lost.

Splinter of Hope

As I waited to find out what Dr. Second Opinion would say, I spun my hopes into had-to-bes.

When it came to silly issues like disputing a Fibromyalgia diagnosis, hopes weren’t real enough for me. They were flighty, unverifiable and worthy of pity. But when it came to serious issues like my mom-in-law’s struggle to survive Leukemia, hope was not only okay, it was required.

Eventually I did find hope in my own situation, but waiting for validation during the six months after my appointment with Dr. HC, I couldn’t afford another intangible in my world of unsubstantiated claims.

So hopes became facts. I hoped that Dr. HC was wrong and I searched for proof. According to the web, he had pressed on my muscles too hard, so the test had to be incorrect.

I wished to know what was happening to my body. According to the web, the symptoms had to mean MS.

Even my mind, which was not working at full capacity, was capable of skewing the facts to create a world I could live with. Not that I thought MS would be the ultimate outcome. But it would be a solid diagnosis with real treatments.

As I waited I was getting worse. I couldn’t type all day at work without wearing arm braces. Honestly, they didn’t help much, but I figured it was better than nothing.

I had a headache all the time. All the time. I went to bed with a headache and I woke up with one, and there was no relief in between. Often the pain would graduate from the normal low grade ache to a pounding, all-encompassing mess.

Sleeping offered no real rest. I slept at least eight hours a night, but it wasn’t restoring my energy. Waking up most days was depressing. I was still tired, and it felt like my body had been struggling overnight. Some mornings I felt like I had just run a marathon.

The fact that sleep didn't restore me made going to bed pointless, but I did it. And getting up exhausted was tiring, but I did it. There was nothing else to do.

I was terrified to find out what was really wrong with my body and at the same time, I was scared to never know. In an effort to keep fear from collapsing me, I had to find hope somewhere.

Dr. Second Opinion became my pastor, even though I hadn’t met him yet. All of my faith was invested in a true diagnosis, and he was going to guide me there. Not a wish, a fact. Believe it and it is true.

In this way, hope became a thin metal rod that slid through my tab-top spine, holding me straight and facing forward.

Dirty Liar

I went for a check-up yesterday. It was nice to see my specialist smile after he read my test results.

Every trip to the hospital makes me think about my journeys; the one to a proper diagnosis and the one to Healthy Town. Since I started writing this blog, the appointments have also brought back memories of what I did to isolate myself.

Even the most anti-social guy is a social being. To be truly anti-social, you’d have to live in the woods by yourself completely off the grid and off the land.

I’m not very good at catching fish and I’ll never know a poisonous mushroom from a good one, but I wanted to learn when Dr. HC diagnosed me with that shit condition. Instead of watching reruns of Survivorman, I stayed in the city with Tim and the doctors.

Living with neighbours, co-workers and family can be tricky when there’s a part of you that you’re unwilling to share. Luckily, there are a few ways to tell a non-truth.

Misdirection: You weren’t here yesterday, says a co-worker. Are you okay? Ah, I wasn’t feeling well, I reply, but I’m great now. Hey, how did the big meeting go? Was Frank super pissed about your numbers?

Side step: Do you have Fibromyalgia? Well, Boss, there’s a lot going on right now.

Denial: I’m fine, don’t worry.

The truth is, in order to segregate my illness from certain parts of my life, I had to lie. I remember one test that required me to wear a pretty bulky piece of electronic equipment for 48 hours during the work week. My first thought was about hiding it from my co-workers.

And I did hide it. If anyone noticed, they didn’t say. There are enough people there who would say something, regardless of my attempts to stay distant.

Lying takes tremendous energy, which was something I didn’t have to spare. I had to map out escape routes beforehand, because I wasn’t good at thinking in the moment. I had to pin down distractions.

At first, my heart would pound with every spoken lie, and then it became routine. Easily ignored. Just like the middle-aged panhandler, who made me sad at first. His sign said he needed money because he was travelling. Three days later, that same man was there with the same sign. After two weeks, I was annoyed, and a month later I didn’t care. The sign might have been more effective if he travelled to another intersection.

In my life, I at least had the decency to change my sign according to circumstance. But it didn’t really matter, because with every act of misdirection, the adrenaline slowed and I became a liar.

Really

Reality T.V. is a misnomer, even if we completely ignore the whole actor versus nobody argument. There isn’t much reality in those shows. The networks cut out the monotonous maintenance.

Who can blame them, really? Would you watch a show that was only about Kate driving to the zoo, or cutting up carrots, or folding the laundry?

Vince Shlomi couldn’t sell that show.

Normally I would argue that we are what we do all day every day. Today, though, I’m focusing on some surreal moments that have defined me.

During my last year of high school, I was working for the local paper to earn credits toward my diploma. An excited bird watcher called the paper to report a rare bird sighting on the lake behind his house. I can’t remember what kind of bird it was, but I remember that it was too far away for a good picture.

The guy offered to take me out in his canoe. He gave me a lifejacket, helped me climb in, and paddled toward the bird. I had been on a romantic canoe ride with my boyfriend the week before. With that serene scene in mind, it was absurd to find myself crouching in a canoe wearing office clothes, camera at my eye, listening to a stranger whisper facts about the bird.

In the end, I didn’t get the shot, but I got a taste for chasing little pleasures.

The winter before, my boyfriend and I were driving to a funeral on roads that were covered with ice and snow after a storm. He couldn’t safely drive faster than half the posted speed limit.

On a back road, far away from the last farm house, there was a car flipped over in the ditch. As we slowly drove by, I thought I saw movement in the front seat, so I asked him to stop. He reversed a few feet and parked on the snowy gravel shoulder opposite the accident.

I watched my boyfriend pry open the passenger door and pull a stunned woman out of the tangle of a seatbelt and then out of her car. And then another woman. I stepped into the cold air, gathered my long, black dress, and ran over to make sure they were okay.

They seemed okay, but shaken up. We all used our cell phones to call for help. Assured that the women would be safe, and afraid to be late, we got back in our car and headed north again for the funeral.

Watching my boyfriend extract those people from a rolled over hatchback that afternoon and then holding his hand as he accepted condolences that evening after saying goodbye to his grandmother, I understood both the tenacity of life and its frailties. I could see that even though we had little control over certain situations, we had choices in many others.

A few years later, my surreal moments started to take me down a darker path.

The new definition of me began in an ugly green office. That green wouldn’t wash off my fingers, and it grew on my skin like moss. My only response at the time had been, What?