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?

Minding the Ship

I’ve been struggling with the idea of a mind-body connection since my mother-in-law was diagnosed with Leukemia.


Some people believe we can control our bodies with our minds. What do you think?

Here’s what I know:

My mom-in-law didn’t think her way into sickness and she couldn’t think her way out. I know for sure because she was a god damned inspiration to other cancer patients in the hospital. She was out of bed every day, carting her IV pole around the halls, encouraging others to hold on through the really rough days and to get out of bed on the not-so-bad days.

The cancer went into remission, but then it came back and it never went away. She didn’t do anything to bring the Leukemia back, or to get it in the first place. She didn’t control her body with her thoughts.

I also didn’t think my way into cardiomyopathy. I did live with a heavy heart for years. I was depressed. But I don’t believe my negative thoughts brought on my illness. It was purely a coincidence – something I spent too much time thinking about because I wanted to have some illusion of control over my situation.

The atoms in my body were not rallied into good or bad health by my thoughts, fears or desires.

I didn’t get better by thinking positive thoughts; I took drugs and I got lucky. I was just as depressed when I was diagnosed as when I was taken off the pills. Happiness came after the good news.

What do you think? Am I bitter or missing something? Am I on the right track? Do you think you can control your body with your mind? Did good thoughts bring you health? Bad thoughts bring you sickness?

You're Special: Crib Notes

This is the second part in a series.

I collect money all day long. Every once in a while, almost everyone I speak with in a day lies about making a payment. That day was Friday.

First thing in the morning I was bullied mafia-wife-style by a real estate agent who had already lied twice about paying her bill. My next few clients were really mean. And then there was the young woman who had not paid her bill since she had become a client, had already lied about paying it three times, and still wanted her service back.

It went on and on all morning, and it started again after lunch. By mid-afternoon I was tense and grumpy. There was no doubt in my mind that the next client would try to sell me a load of shit, too. Natalie, I think, was the next client. She told me the last guy promised to credit some charges, but didn’t do it.

Yeah right, Natalie, I thought. That’s a common lie. Her account didn’t show that promise, so I assumed she was just another Friday client.

Well, I asked the guy who talked to her last, and it turns out I was wrong. Natalie wasn’t lying.

It took me half a day to throw out my basic philosophy about humans. I’m pretty committed to the fact that people are basically good, and every other day last week solidified that fact. Four hours of shitty people trying to take advantage of the system and get what they want without doing what they should have and I forgot all about the other guys.

Specialists must have heard lies, too. People lie to doctors for all different reasons: guilt, fear, stupidity and ignorance are just a few.

I bet they have days filled with lie after lie. You’d be screwed if you were the first appointment after lunch. But it’s one thing to assume a client is lying about money, something else entirely to assume a patient is lying; the stakes are much different.

So how do you cut through all of the human bullshit that even specialists can’t cure to get the treatment you need?

It’s hit or miss, truthfully. There’s no foolproof way. I know that sucks, considering we may be talking about life or death. There is one thing that may help if you can pull it off when you’re sick and dead tired.

Be prepared, but take his cues. I’ve read articles that insist writing a list of symptoms is the best way to get better. Those articles encourage you to take the list to your appointments. Some even suggest making a copy for the doctor to keep.

Here’s the thing about that approach: it works for some doctors and not for others. A doctor told me that patients who walk through the door with lists are considered hypochondriacs or liars by some.

If you run into that doctor, especially on a bad day, you’re not going to get what you need if you start your relationship by reading from a list. So, write a list, but keep it in your pocket. Concentrate on connecting with the doctor as a human.

Ask your advocate to help you remember the symptoms if you have a bad memory. Only take the list out as a last resort.

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.