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?

Face It, Kiddo

Can you give up on anything if you’re still alive?

That girl who sang in the shower couldn’t sleep at night unless the ideas that had filled her head all day were on paper. That woman who woke up in the hospital hadn’t written more than a grocery list in years.

I had given up on my dream; my way of understanding the universe. Partly because writing had become really hard for me and mostly because I lost confidence.

There comes a point, at least I thought so for a few years, when you have to face reality. I finished a novel when I was sick, dressed it up and sent it out into the world. Not surprisingly, it was rejected. The feedback I got was disheartening.

“I just don’t love it enough.”

Vague and brutal. Obviously I missed the mark. Unfortunately, I was too stupid to figure out what the mark was, and after a few more rejections, I gave up. I knew the novel had to be re-written, but I didn’t think I could do it. I said to myself:

It’s gone.

You’re not that person anymore.

You might never be well enough to get it again.

And I started to believe those things. Really, I could barely think straight most days, so it made sense. I thought I had reached ‘face time’. As in, time to face the facts, kiddo. Grow up, start a career, get serious. Time to stop dreaming.

But life isn’t linear like many novels. Life is marvelous and unexpected and beautiful.

My life zig-zags and loops back, and at one point it was a series of random dashes. Writing was a myth when I didn’t have the brain power to create a clear sentence.

I’m slowly gathering the courage that I need to face the myth, because I won’t truly give up until I’m dead.

Rage, Rage

When Dr. Second Opinion locked me into the Fibromyalgia diagnosis, I was trapped. His official word was the heavy canvas blanket that started to smother me.

Even though I knew, at the very least, that it wasn’t the whole story, I didn’t have the energy to fight two specialists. Energy was a scarce, barely renewable resource back then, and hope had just been listed as an endangered species.

True, I gave up before the physical exam was over, but when I got home that night, having put some distance between myself and that scoundrel, I could clearly see how he had wronged me. As the healthy, able-minded expert in our duo, Dr. Second Opinion was obligated to get the input that he required to make an informed decision.

He stabbed his fingertips into more than twenty points on my body without much response. He needed my input to make his diagnosis, but I stopped talking after the first three or four points. He didn’t even bother to acknowledge the fact that I had stopped answering his questions.

What was wrong with these two doctors? Why was the first one an idiot who just wanted to get me out of his office? Why was the second one an asshole who was more concerned about his relationship with the first doctor than with the health of a young woman?

When I stopped answering questions and started asking them, I got angry.

My hatred for these two specialists was the green that grew on me like moss. And allowing myself to feel rage for my own situation opened the gate to feeling rage for the Leukemia that was killing my mom-in-law.

A wave of rage filled the hole I was living in, floating me for quite a while.

The anger triggered a physiological response in my body: adrenaline rushed through my blood stream and my heart pounded. This raging energy gave me new life; and the ability to face a threat standing tall. As old-fashioned as our fight-or-flight defense mechanism is, it certainly isn’t obsolete.

My new found attitude had consequences, for sure, but for a time I felt unstoppable.

Fibromyalgia? Fibro-go-fuck-yourself.

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.