Sunday, January 31, 2010

My Heart is Yours

Some couples are always together.

I’ve heard tales of couples who lived an entire life together without spending one night apart. Stories like that always make me wonder about business trips. Does one partner follow the other on every business trip? Do the kids go too?

Maybe it’s an exaggeration. If not, it sounds a bit co-dependent; at the very least, it would be a logistic nightmare. Those stories never inspired a sense of awe or desire in me. Keep in mind, though, that I completed two years of college while living about one hour away from my boyfriend – the guy who is now my husband – so I know we can be apart and not fall apart, and I consider this an accomplishment.

Those facts aside, I’m pretty sure the night of the sleep study was the first night we had spent apart since I graduated from school.

That night, I marched up to the front door of the hospital with my pillow tucked under one arm and a knapsack packed with pills and pyjamas over my shoulder. I walked down the hall toward the sleep labs, unaware that this would be the first of many visits to those rooms.

I looked around the lab while I changed into my pyjamas. There was a hospital bed with a warm blanket and soft pillow. There were curtains on the window, a lamp and clock on the nightstand. The walls were painted a soft pink instead of the standard hospital green. No television. Oh, there was also a big video camera mounted in the corner of the room near the ceiling.

A nurse hooked me up to a machine that would monitor me throughout the night. There must have been twenty-five wires attached to me before she was done – leads to monitor my breathing, pulse, brain waves and sleep stages.

In the bathroom across the hall, I took my pain pills and my sleeping pills. A small monster stared at me as I brushed my teeth. White wires veined my long, dark hair. The wires stuck up from my scalp and then looped down toward my shoulders.

Little did I know, becoming that monster for one night was my first step back to wellness.

I slipped back across the hall in my socks and sat on the bed, testing the firmness of the mattress. With the lights off, the glow from the small lamp gave the room a homey feel. It was only 9pm, so I took a book out of my knapsack and gingerly laid my head on my pillow. The wires made it uncomfortable, but not unbearable.

Still, it was hard to concentrate on the novel. The results of the sleep study would be disclosed after about two weeks, around the same time that I was scheduled to see a neurologist, Dr. Brain, and possibly get a diagnosis of MS.

As anxiety crept into my veins, threatening to keep me awake all night, I closed my eyes and thought of my husband. We were apart that night, but my heart is always with him. The worries quieted and I soon fell asleep.

Wednesday, January 27, 2010

Next Time I'll Bring Alexisonfire

The MRI was booked before the sleep study. I was warned that it would be loud, time-consuming and possibly make me feel claustrophobic. I was told to bring music.

The night before the test I got ready for bed by relaxing in the bath. I usually have a hard time sleeping the night before a doctor’s appointment or a test, and a warm bath does help, even though it gives me time and space to dwell on the possibility of bad results.

That night, I spent an hour deciding what music to bring. It had to be relaxing but not boring.

As I sat in the bath, thinking about MS, I listened to Foo Fighter’s acoustic album. It was perfect – calming and a little dark at the same time. It became my MRI theme music.

When I arrived at the hospital the next morning, I was absolutely positive that my mystery would soon be solved. I was convinced that I had MS and that this test would show lesions on my brain. The thought created both anxiety and peace inside of my mind and heart. It would suck, but this stage would be over soon, I assumed.

The MRI technician was in her twenties. Well, I thought she was the technician until she told me that she was the assistant. She took my CD and then showed me into the room. It was a huge white room empty except for the daunting machine, which is basically an examination table with a large tunnel at one end.

I got to keep all of my clothes on - a nice change of pace from the many other tests I had taken up to that point. Patients have to get naked too much as far as I’m concerned.

The assistant positioned me on the bed, lined my head up to the tunnel and went back to her room, where she could watch the images and control the machine. She started my CD as she told me not to move.

When the tunnel moved over my head, the machine started to make an obnoxious banging noise that was only subtly obscured by my music. (Next time I'll bring Alexisonfire.) I stayed very still during the hour-long scan, afraid even to breathe too hard in case it blurred the pictures of my brain.

To keep myself occupied, I imagined that my thoughts and feelings could light up different parts of my brain for the picture, and I went through a range of emotions from sad to angry to happy by thinking of people, places and days that made me feel one way or the other.

The songs played one after the other, getting closer to the end of the album as I regulated my movement. After staying still for a while, my body wanted to twitch and scratch itches and stretch, but I ignored it. I took three or four shallow breaths, and then allowed myself a deeper one, but never a full lung and gut breath, just in case.

I didn’t want to give anyone any reason to doubt the results. I wanted those lesions to be clear.

The worst part of any test, for me, is once it’s complete and I face the person who knows the results, but is unable to tell me what is wrong with me. Over the course of several years, every smile I saw contained to the lips, every twitch at the corner of a mouth, every gleam in an eye became a sign that the test was either negative or positive.

This test was a big one, and I wanted to know right away if I had MS or not. I tried to read her face as she handed my CD back. Is there any pity in that smile? Is she looking at somebody who may be crippled in a few years?

I couldn’t tell.

Sunday, January 24, 2010

One Lifetime

I could have died.

Would have died if I was born only eighty-one years earlier. Maybe even fifty years sooner. The technology to diagnose my problem was invented in 1924. One of the medications that saved me was released to the public in 1958.

It would have been a slow and painful death. I would have spent my last months feeling terrified and alone and depressed.

And if I had died from the sickness that had eluded doctors for so long, I would have missed my chance at coming close to death again.

Knock knock.

Who’s there?

You know who it is.

It’s weird. All the time I was sick, I never once thought about dying until I was properly diagnosed. It didn’t feel like that kind of illness. Plus, I was stuck on the MS possibility for a while.

So, I could have died. It’s something I think about before I fall asleep some nights. Sometimes, on those nights, I have nightmares - not necessarily about death, but about situations that fill me with anxiety. Fear dreams. Big fears.

The truth is, given the technology that exists today, and the level of care available, the only danger of death would have been going for a few more years without diagnosis. I was much more likely to have died shortly after I was welcomed back to Healthy Town. (I’ll get to that later.)

But if I was born eighty-one years earlier, I would have died for sure.

It sounds like a long time ago, if you don’t consider how long the earth has been around, or how long we live these days. One lifetime makes a huge difference.

Makes me wonder what my children will see in their lifetime.

Cure for all cancers? At least breast cancer. Cure for AIDS? A vaccine for HIV is in the works. Cure for MS? Possibly. Gene manipulation to avoid progressive disease completely, before symptoms can even appear? I think so.

Wednesday, January 20, 2010

My Doctor is a Hypochondriac

So there I was, barely held together with anger, on the verge of depression, in pain and exhausted. The pills the doctor had prescribed made me numb. Literally, the top two inches of my skin was desensitized by the drugs.

It was hard to advocate for myself in that state.

But I knew without a doubt that something undiscovered was happening in my body, and it was clear that nobody was willing to push for more tests after I was banished to Fibromyalgia Town.

I was getting worse, though. Waking up in the morning was depressing. The sleeping pills I took kept me asleep, but didn’t help me get the rest I needed to feel restored. I struggled to start each day when I felt like the previous day hadn’t ended. Some days I was too tired to get out of bed.

Those days pushed me to advocate for my health. I couldn’t accept that I would just get worse and worse and worse until who knows what. Until I became disabled permanently? Until I completely lost my mind?

No. I had to do something. So I went to my family doctor and pleaded with her. Because I was convinced at the time that I had MS, I asked her to send me for an MRI.

She told me, her voice full of conviction, that I didn’t have MS. She booked an MRI to humour me. I also asked her to send me for a sleep study. I figured something was wrong there. My doctor said the study would not confirm or dispel the Fibromyalgia diagnosis, but I didn’t care, I wanted to get some sleep.

Despite my doctor’s convincing tone, I thought the MRI would show MS. I was wrong.

However, it turned out that my demand for more tests would lead us to the right diagnosis in quite a roundabout way.

Sunday, January 17, 2010

Thoughts and Questions

Is it weird that I consciously make decisions on an hourly basis to stay in line with my morals, but also admit that I am a dirty liar?

Technically, admitting my lies keeps me in line with my morals, though lying does not. These kind of details used to bug me, used to keep me up at night. I used to think so much, I had to make up characters and stories to occupy my mind and avoid insanity.

When I was sick, most of my thoughts were silenced. It didn’t happen suddenly. It certainly wasn’t dramatic. Because I was so tired all the time, I assumed the energy I used to spend on thinking about stories and morals was extra. My extra thoughts were pruned away.

But those thoughts were me. They came from me: my worries, my curiosities, my neuroses, my epiphanies. They lived in my mind. And then they were gone.

Am I my thoughts, or are my thoughts me?

This was the kind of question that I used to try to answer when I wasn’t creating characters that had their own problems. Yup, plenty of people would agree that I had extra thoughts.

Did those thoughts do me any good?

Yes and no. Yes, the thoughts gave shape to my personality. And no, sometimes it was too much and I just wanted the thoughts to stop, give me peace.

Eventually, after my thoughts had been few and necessary for so long, the peace came with extra thoughts, not when they temporarily went away. Now I am grateful for every creative thought, and I hope to keep it that way even when I want to scream because I’ve been awake in bed for hours.

Wednesday, January 13, 2010

Karma Crusader

After talking with friends and thinking seriously about my anger, I think I know why I haven’t fully let it go.

True, it doesn’t affect me like it used to, meaning I don’t physically feel the anger even when I spend so much time reliving the memories that I can taste the blood in my mouth as though I was biting my cheek hard enough to stifle an urge to lash out.

But as Helen pointed out, the lack of a physiological reaction to the anger doesn’t mean I’ve let it go. Somewhere in my cells, I'm housing anger toward Dr. HC and Dr. Second Opinion because , at the very least, their negligible diagnosis made it incredibly difficult for me to get the proper diagnosis, which put my life at risk.

This week, I was listening to a radio interview with Dan Ariely, the author of Predictably Irrational: The Hidden Forces That Shape Our Decisions. Ariely talked about an experiment in which one guy overpaid for an item with two different groups of people: one control group, and one group of people that were purposely annoyed by the guy right before he overpaid. (The guy took a call in the middle of the interaction and rudely made the people wait without acknowledging it). The first group gave him back the extra money most of the time; the second group kept the money most of the time.

Ariely said that people didn’t keep the money because they were dishonest, but because they were trying to restore some kind of karma. In other words, the guy who treated them badly didn’t deserve the break they would have given him by fixing his mistake (paying too much).

What he said resonated with me. Big time.

I’ll admit it here and now: I am a karma crusader. If I see a wrong, I think it’s my job to right it – especially if I feel someone is being treated unfairly. My style is a bit different than that of the people in the experiment. I wouldn’t have kept his money, because I don’t think that’s right and I consciously make decisions on an hourly basis to stay in line with my morals; but after he hung up the phone I would have made him wait a bit longer than he made me wait.

So yes, I spend too much time trying to restore balance and justice into the most insignificant events. Why? If I don’t, I hold on to the anger of being unfairly treated.

Before I heard this interview, I had just realised that I’m worried letting go of my anger will give the two specialists who messed up a free pass, and they will never have to answer for their actions. My first thought to resolve it, then, was to find a way to file a formal complaint against them. Maybe it would stop it from happening to others.

Thanks to Ariely, I think there is another solution. In most cases, I will fold up my cape and let karma figure things out without my help.

(Because Dr. HC may misdiagnose more people, I think I have to do more, but Dr. Second Opinion was just a jerk, as far as I'm concerned, so he will fall into the 'most cases' category)

Folding the cape means giving people a break for no reason at all, and especially when they don’t seem to deserve it. If I can dole out at least one break a day, I think I can change my life. And if you do it with me, we might be able to change the world.

Sunday, January 10, 2010

Portable Fences

I’m finding it hard to write about anger.

I knew how to be angry, how to use it to keep going, and even how to direct it toward threats; but I didn’t sit down one day after being misdiagnosed and decide to get angry for all the benefits.

Anger was a reaction to a series of events that left me feeling almost hopeless. It’s an emotion that was hard for me to control. I let it consume me and affect many aspects of my life.

Somewhere between anger and depression, there was a great deal of self pity. Even though it was always tempered by the fact that my illness was not life-threatening, and I was learning too much about life-threatening illnesses to ignore the blessing, my pity and anger brought me to hurt people on occasion.

This is why it’s hard to write about. I feel awful for hurting people and embarrassed that I acted so disgusting some days.

I didn’t physically lash out. In some cases I was judgemental, in others plain mean, and most of the time my lack of interaction either directly or indirectly hurt friends and family. I carried a portable electric fence in my pocket. When I was angry, people knew.

To those that I hurt, I am sorry. I hope this journal gives you some insight into my actions, and I hope that you’ll give me a chance to connect with you if you haven’t already.

Carrying anger has been harmful. At the time, I didn’t know how to feel it only when it was useful and then let it go.

I’m not sure if I’m good at letting it go these days either. I’m still angry with Dr. Second Opinion and the other doctors who made me feel stupid and useless. But I can feel the anger without feeling the physical effects, like a heavy heartbeat and tense muscles and headaches.

Is that letting go?

Thursday, January 7, 2010

Anger Loves Me

I think anger and depression are only separated by helplessness and hopelessness.

My illness and the doctors who misdiagnosed my illness made me feel helpless, but my anger gave me power in some situations, and knowing that I still had some power helped me remain hopeful that I would eventually find health again.

Though anger let me feel alive, there was only one time it actually helped me.

A few years ago I ran into a confrontational toughy in her mid-forties. Her fifteen-year-old beat-up Mercedes was parked at the pump of a small gas station. When I pulled up to the pump, I couldn’t get close enough because the Mercedes was hogging up the space. So I turned off my engine and waited for her to finish.

I watched her walk back from the store after paying for the gas and then get in her car. For some weird, possibly territorial reason, this woman aggressively gestured for me to back up so she wouldn’t have to reverse and go around my car.

Before sizing up the situation, which included the facts that the has-been party girl was bigger than me and had two male passengers, I shook my head and rolled my eyes. She hated the fact that I didn’t act as commanded. She got out of the car.

By this time, of course, my heart was pounding, but thanks to my flowing anger, I was ready for a fight.

This is another surreal moment in my life. As she approached the car I wasn’t sure what to expect. My window was open and my seat belt was on. She stood next to my car and got right in my face. She grabbed my door, her fingertips inside of my car. She called me out as if we were guests on Jerry Springer.

She expected to have the advantage by taking advantage of the element of surprise.

But I surprised her by undoing my seat belt and opening my door.

Honestly, I didn’t get out of my car to fight; I got out to protect myself. Years before this incident, I had seen a high school friend get attacked through a car window. And I really didn’t mean to hit her in the stomach with my car door when I threw it open. I was glowing with adrenaline and I had misjudged the space she had suddenly made between herself and my car when she saw me put my hand on the handle.

In thirty seconds, by instantly answering her call to fight, I turned the element of surprise around and threw it in her face. It wasn’t something that I thought out; it was just something I did because anger was at the ready.

She didn’t back down immediately, but she didn’t throw a punch either. She got back in her car after some face-saving encouragement from her friends, and then she reversed and drove around my car.

Luck played some part in getting me out of the situation without a broken nose and a criminal charge, but if I wasn’t regularly raging during that period in my life, I would have hesitated. I have no doubt that hesitation would have changed the outcome of that confrontation.

But living angry is hard on health and relationships.

It helped me stifle depression for a while and avoid one ass kicking. Was it worth it?

Has anger ever helped you?

Sunday, January 3, 2010

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.