Letting Go

Happy Mother's Day!

I've been focusing on some heavy stuff during the last five months: depression, anger, fear, misdiagnosis, illness, a near-death experience, and loss.

You know what I learned from sharing my deep dark fears and my private journey in a public space where anyone in the world can read it? Letting go has made me free.

I let go of my fear that you will judge me.

I let go of my sadness, my anger and my shame.

I let go of my need to help karma find Dr. H.C.

I let go of my fear that I will get sick again.

I may very well get sick again; I may even lose myself. But I know what to do, I've rallied support and I know that it's possible to come out on the other side standing tall and pretty much back together again.

Thank you for reading my story and for sharing your stories and advice. It has helped me let go.

I love blogging so much I don't want to let that go, so in the next week or so I will transition to an entirely new blog.

After examining my illness and depression, I want to keep it light for a while. (Though, if you know me, you'll know there will be an element of seriousness in everything I do.)

Consumerism has always been fascinating to me. I've thought about it a lot.

Take today for example, a holiday I think is one of the least commercial. Moms want to take a day off and be appreciated. Kids make a special breakfast or clean the house or write a poem in a card.

It's not about diamond rings or dozens of blood red roses.

Or is it different for you?

The Space Between

Part of the reason I‘ve been writing this blog is to answer the question I posed in Up For Debate: what is personality? Is it more like neurons (the mechanism that releases the chemical) or the synapses (the space between, where one chemical is deposited to meet another chemical)?

The girl who sang in the shower disappeared for a few years. I’m not exactly sure where she went. Where ever I was, I must have existed. Or I wouldn't have been able to come back. So what happened in between?

Did I get sucked into an undiscovered black hole that exists, under the right conditions, in every person’s body? Was my personality so well hidden that it was indistinguishable from my surroundings, like a light brown mouse in a sand storm?

Even more interesting: I came back.

Without any focused thought or energy. No prayers or devil worship or telethons. I just reappeared one day in the hospital. It didn’t happen right after the medicine had fixed my heart. And it’s not like my ejection fraction increased dramatically right before I started singing again.

I am convinced that we’re a product of our circumstances. Yes, we have free will to be whoever we want to be, but we usually choose who we want to be based on our circumstances. I remember feeling scared as a little kid when we had a suicidal foster girl living in our home. She locked me in the bathroom with her and talked about cutting her wrists. At some point during the foster family experience (there were several living with us over a period of a few years), I wrote the Kids Helpline number on a piece of paper and hid it under a loose tile.

There was a really great girl who lived with us for a long time, someone I grew to love. But that good experience didn’t cancel out the really bad one. That fear as a child was so big that I still remember it, and I will never bring foster children – especially not teenagers – into our home. I would do other stuff to help, but never that.

Free choice is a tricky concept; maybe even an illusion. I didn’t want to disappear. I wanted to be the girl who sings in the shower, the girl who is trying to be an author. I didn’t have a choice.

I think, like most things in this world, reality is somewhere in between; not completely free will and not entirely random circumstance.

One illness, one misdiagnosis, one disappearing act and one blog later, I think personality is more like the synapses than the neurons. We don’t simply think our way into the person we become. It’s not something that just happens to us (most of the time). DNA, circumstance and free will meet together in that infinite space between to form personality.

I know I can’t control my circumstance, so I know that I may wake up tomorrow as the girl who doesn’t sing in the shower. But I can hope that I am never lost again.

Survival Mode

I didn’t realise it at the time, but when I was depressed and sick, I was struggling to survive.

Not in the same way K’naan sings about in his song Waving’ Flag (So we struggling; fighting to eat/And we wondering when we’ll be free).

Because my basic needs were met, my struggle was existential. I wasn’t sure if I could live with the pain or be a good mom. I was faced with redefining myself when I lost my ability to write. Oddly, I turned to material things to ease my emotional turmoil.

I bought a lot of stuff we didn’t need. We ate in restaurants at least three times a week. When we ate at home, it was steaks on the barbeque and mini potatoes with the perfect pre-packaged spices. I stopped drinking beer and starting drinking Yellow Tail. I used expensive face scrubs and wore Vans.

My new attitude toward the finer things came gradually. I didn’t throw out my plain black running shoes thinking I would replace them with something more expensive, just shoes that worked. But when I got to the store, after a long, hard week of working while exhausted, I had an epiphany.

Why not get the Vans? I deserve a little something for all I do.

Did I go for the stuff because it was there, because I thought it would make me feel better, or because I was too fucking tired to deal with my emotions?

Day after day, work was hard and I deserved to get something for the money I was earning. Something more than my roof and Kraft Dinner in a pot. Each day I made a choice. Before long, I was making the same choice every day, and having wieners for dinner just seemed less than I deserved.

I didn’t go without. I didn’t think I should.

Now, I wasn’t going too crazy – I kept it within my means. I wasn’t buying boats or million dollar houses or cars I couldn’t afford. But we went to the movies when we wanted to and I bought every hardcover I wanted to read.

Consumption consumed me; it became my life without writing, without hope, without joy. Stuff was my happiness, because I didn’t think I could be happy with a progressive illness that attacked my mind and body.

I think we all do it on one scale or another. I think it becomes a problem before we realise it.

The worst thing about consuming my way to happiness was that it didn’t work. A wine and steak dinner never made me feel taken care of or safe. The temporary comfort that stuff brought me was just enough to keep me wanting more. It was easy, mindless and always in my face.

Even shells of people are able to buy shoes.

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?

One Last Karma Crusade

Dear Dr. Hope Crusher,

CC: Medical Disciplinary Board

Your misdiagnosis really messed me up. I want you to read this so you don’t do the same thing to someone else.

I was referred to you because I had pain in both of my arms for no obvious reason. My family doctor thought I had arthritis, but you glanced at my file as you walked down the hall toward the examination room and decided that I had Fibromyalgia.

It had been just three months since the pain began. There was no pain in the lower half of my body at that time. You jabbed your fingers into my muscles hard enough to hurt me everywhere, not only on the tender spots, but you ignored the fact it was you who was hurting me, not my illness.

You handed me a few photocopied notes and diagrams about stretching and guided me out the door.

There was never any follow up. You didn’t recommend more tests – not even a sleep study – or more doctors. You only saw me once. My family doctor had to prescribe me pills and check in with me and help me manage my day-to-day pain and fatigue.

Because you had incorrectly labelled me with Fibromyalgia, other doctors either thought I was a hypochondriac or a lost cause, and I went for years without finding out what was really wrong with me.

After years of no sleep, even while taking the sleeping pills recommended for patients with Fibromyalgia, I got fed up and demanded a sleep study. Luck for me, I had the energy that day to advocate for health.

The sleep study uncovered a major issue with my heart. I know you’re not a cardiologist, but you’re probably smart enough to realise that cardiomyopathy causes fatigue.

Turns out all I needed were beta blockers and ACE inhibitors to make me feel better. I’m not exhausted or achey or stiff anymore, Dr. H.C. I have been living well without medication for a very long time now, Dr. H.C.

If you had taken the time to diagnose me properly, instead of trying to stuff me into a neat box and then throw me out the door, you would have saved me a lot of heartache.

If you practice medicine every day the way you practiced medicine with me that day, you are a disgrace. You should put your medical licence in that box, set it on fire and then go back to school to become a Wall Street broker.

I’d rather you fuck with my money than my life.

With all my heart,

Jenn

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?

Life After Death

I don’t remember much about the day my daughter was born other than what I’ve already written.

Here’s what I’ve been told: I needed two bags of blood after hemorrhaging; I knew who I was but not where, so I had a CAT scan at three in the morning to check for signs of a stroke; and at some point during all of this, possibly because of the magnesium sulphate IV drip, my heart rate dropped to seven beats per minute.

Seven beats per minute.

One of my nurses was five months pregnant, and big enough for me to notice nothing except for the baby belly. The belly set me off when I wasn’t best friends with reality.

I had a nightmare that kept my blood pressure high for days. In my nightmare, the pregnant nurse handed me a pair of scissors and told me to cut my baby. She said that every baby who was born by c-section was only allowed to survive because another baby had been scarred or killed.

If I didn’t cut my baby another baby would die. It was the circle of life. A baby before mine had died to pave the way for us. It was our turn.

It was terrifying because I honestly believed that the nurse wanted me to cut my baby’s stomach open with scissors. The nurse who was in charge of my life in the ICU.

Tim stayed with me to keep me calm and rational. He sat in an uncomfortable armchair beside my bed until I fell asleep at night, and then he slept in the Quiet Room a few feet away. He was also there for our daughter, who was stuck in NICU while I was getting better.

He rubbed my head and told me jokes. He listened to my paranoid ramblings, took my fear seriously and helped me see what was real and what was not. He picked me up out of bed, put me in a wheelchair and brought me over to our baby whenever the nurses said my blood pressure was stable enough.

His love was the only thing that dispersed my fear long enough to lower my blood pressure. His effect on me was more powerful than the labetalol they were feeding me through IV.

How did I get to be so lucky?

When I was finally moved to the maternity ward after days in the ICU, my roommate was also moved from ICU. She had preeclampsia much earlier in her pregnancy than I did, and her baby was born way before term.

She was fine, but her baby would have to stay in NICU for weeks. Her story made me want to curl up beside her in her hospital bed and brush her bangs out of her eyes. She actually lived an hour north of the hospital, and she could only stay in her room for five days. After that, she had to find a hotel, or pay per day to use the hospital’s family house.

Her little preemie was fighting for his life, trying to use his underdeveloped lungs in the incubator next to our plump little baby. Our baby was perfect; she was whole.

My roommate had to listen to our baby cry and coo when we were able to bring her into our room. She had to listen to the lactation consultant give me breastfeeding tips. She was an uninvited guest to our joyous celebration while her little baby struggled down the hall. It must have been heartbreaking.

As for me, the luckiest girl in the world, I was the live, proud new mom to a perfect baby girl. And I woke up in the hospital basically the same girl I was before I was sick. I can’t tell you if it was the drugs, the detox effect of ICU, or some kind of near-death phenomenon that righted me.

I could have basically been right after the heart meds, but didn’t give myself enough time to fully adjust before getting pregnant. Or something else was happening.

Whatever it is, here I am, the luckiest girl in the world. My husband loves me unconditionally. My baby and I are alive. I am myself again.

Life after that experience has been amazing so far.

You're Special: ICU

This is the third part in a series. You can read the first part here, and the second here.

They wheeled me right to the ICU from the recovery room after our baby was born.

My experience in ICU is actually the beginning of a very traumatic time. I’ll get to that soon, but first I want to write about seeing a specialist while you’re in a hospital bed.

When you’re conscious and alert, it’s reasonable to shoot for goals like reading cues and writing lists. When you’re wheeled into a room on a stretcher, it’s not.

There isn’t much you can do to control the situation when you don’t know where you are. My situation, being in the ICU, was extreme. Sometimes people don’t ‘know where they are’ even when they literally know where they are.

If you’re so tired/confused/fucked up that you can’t contribute in any meaningful way to your exchanges with your specialists, I have one piece of advice:

Trust them.

For the most part, doctors are competent, caring people. They know the ramifications of their mistakes. They stuck it out in torturous med school because they want help people. They would rather shove their egos into a donkey’s ass, strap that donkey on a rocket and launch it into space on a crash course with the sun, than kill you.

They work long hours trying to figure out what is wrong. They give up time with their families to keep us alive.

Most people are good people; this includes specialists. Unless something in your gut says NO!, trust is a good thing. And good or bad, trust may be your only play when you aren’t conscious.

Just because I had a really bad experience with one of the seven specialists I saw doesn’t mean it’s something everyone should be on the lookout for. It won’t necessarily happen to you.

I learned a lot about the relationship between relaxation and getting healthy in the ICU. Trust starts with letting go, relaxing your fears and erasing those negative mind-tapes. Sometimes it’s easier when you don’t have any other choice.

Of course, I always had an advocate by my side. I was the luckiest girl in the world.

Labour

When I was in labour, they monitored me and the baby very carefully. My blood pressure was high enough to induce seizures and strokes. A stroke might have killed me.

Nobody explained exactly how my baby could have died, and I refuse to look it up, but it was a very real concern.

I was admitted and induced about 3 pm on a Tuesday. I was moved to a delivery room that evening, not because I was ready to push, but because they wanted to watch the baby closely using an internal foetal monitor.

The crash cart took up so much space in that little room.

Late at night, after what seemed like forever, I gave into the pain and asked the nurses to call the anaesthesiologist. That was a nightmare. My blood was so thick and my veins so swollen, it had taken two nurses and several tries to get an IV line in my wrist that afternoon.

The anaesthesiologist could hardly see my spine because of the water retention. I could tell he was nervous. I actually felt bad he got such a difficult patient.

That nightmare was worth it. I got some relief and a bit of sleep between contractions.

I had really wanted to give birth naturally; avoid a cesarean section at the very least. The OBGYN let me press on until the next day, because the baby was still doing fine. But I just wasn’t dilating, so I had to go under the knife.

As the surgeon cut into the first layer of skin, I said “ouch!”, and he immediately stopped. I didn’t just feel tugging, like they said I would; I felt the sharp pierce as the scalpel broke through my skin.

My body doesn’t play by the rules.

So they fed more drugs through my epidural line, waited for me to feel less, and they started again. This time I didn’t feel the first cut, but I did laugh out loud when the surgeon cut into the next layer. It tickled.

Amid the chaos, our beautiful baby girl was born. I knew she was okay when she cried. I was conscious just long enough to see her squishy newborn face sticking out of the receiving blanket when a nurse brought her into my field of vision.

My life was changed.

Gentle Calm

I wrote in my last blog entry that I wasn’t worried about the odd things that started happening near the end of my pregnancy. I was in good hands, being watched carefully. I was at the weekly check-up point. Everything was okay.

EERRRT, Hindsight yelled. Wrong answer.

Things change quickly in pregnancy. And it’s hard to see the bigger picture when you’re measuring day-to-day. Over and above that fact, my body doesn’t play by the rules.

So, at thirty-nine weeks pregnant, I drove myself thirty minutes down the highway for my prenatal appointment. I waddled into the office, a little out of breath and a lot exhausted. We discovered another five pounds in water weight when the nurse weighed me. My feet were white Shrek feet. My blood pressure was high.

My doctor was very calm. She didn’t tell me what the blood pressure numbers were, and I didn’t think to ask. She simply told me that I needed to go to the hospital straight away. Her voice was even and soothing when she explained that the nurses would check the baby with a non-stress test, and the on-duty OBGYN would check my cervix and decide whether or not to admit me and induce.

With a smile, she said I would more than likely be a mom in the next few days.

The receptionist offered to walk me to the hospital, but I didn’t want to leave my car in the wrong parking lot, so I drove. She told me later that she was really worried about me and the baby.

But when you’re that sick, people do everything possible to keep you from freaking out. Soft and gentle tones and facial expressions are a must for everyone with high blood pressure.

They were expecting me in the maternity ward. After they got me settled into a comfy green gown and onto an exam bed for the non-stress test, I called Tim. I was eerily calm myself, though only as a reflection of what I’d seen so far.

The baby was still doing great – no worries there. I was admitted into the only single room on the ward. In case you’re wondering, that is not a good sign, but I didn’t know it at the time. The single room happened to be right next to the nurse station.

They were monitoring my blood pressure every thirty minutes. Again, the nurses didn’t tell me how high it was, and I was too stunned to ask. The OBGYN decided to induce. He told me that it would be a long process, so it was okay for Tim to finish his day at work, pack our overnight bag (yes, I was unprepared), and then drive to the hospital.

When he got there, he saw the numbers on the blood pressure machine. 199 / 119 (with medication).

No wonder people were worried! Normal blood pressure is below 120 / 80, and hypertension is defined as blood pressure consistently higher than 140 / 90.

Preeclampsia is a serious complication that can result in the death of the mother and child. It can only be cured by giving birth. The good news: the baby was developed enough to make this a very attractive option. If I was diagnosed with preeclampsia before the baby was ready to survive outside of my uterus, we might have had to wait.

Also under the category of good news: I have no doubt that I would have died, maybe my baby too, if we weren’t in a hospital. As little as eight-five years ago, we also probably would have died.

What happened in the next few days is a blur, but I’ve pieced it together with some help.

Anxiety vs Reason

Two amazing things happened at the same time: health and pregnancy.

I had faith that I would have enough energy to keep up with the family we were starting. My heart was light and strong.

At the beginning of my pregnancy I worried more than most soon-to-be-first-moms. Every missed beat was followed by a rumbling through my chest. Because hearts pump the blood that carries oxygen, I had some anxious moments wondering if the baby in my belly was getting enough to survive.

I asked my doctor, instead of obsessing, and I trusted her answer. Deep breathing calmed me down on several levels.

Since diagnosed with cardiomyopathy, I have been the luckiest girl in the world. My heart was fixed with medication, not surgery or a transplant. I am alive and captivated by life. We got pregnant quickly.

I also had an amazing, easy pregnancy up until the very end.

No morning sickness, just a little nausea at night; no trouble sleeping in the first or second trimester, just weird dreams about the huge upcoming change; no hemorrhoids or swollen feet or hairy nipples.

And the baby did great, too, in my belly. Every ultrasound showed movement and all the good stuff you’re supposed to see in ultrasounds.

Yoga kept me focused, limber and relaxed. If you haven’t tried it, try it. Even when things started to get a bit weird, yoga helped me keep it together.

Suddenly, at the end of my perfect pregnancy, I wasn’t peeing as much as I should have been, I started gaining about five pounds a week and my blood pressure was up every other prenatal check. By my thirty-eighth week, my face was so fat that I could hardly find my eyes. And those thin ankles I was telling you about could no longer fit into my boots.

I wasn’t worried though, because the baby was still doing great. I kind of thought I had been getting off light up until that point; I was just paying my dues.

Sometimes reason keeps you moving, and sometimes it trips you up.

Perfection

I’m going to jump right from sorrow to babies.

After a year of heart medication my ejection fraction went from 27 to normal, and I was less tired and less breathless.

Dr. Heart took me off the pills to see if my heart would pump well without assistance. I had to wait for six months before getting another MUGA scan to measure my heart function. Near the end of it I was getting insanely impatient.

The glaring green hands on my biological clock were killing me, but I had to wait for the green light.

Nurse Heart makes fun of me now for being so impatient. I thought Dr. Heart was slow-playing me, so I called to bump my test up a month. My plea worked.

All the anxiety in the world didn’t change the results of my test. (There goes the straightforward mind-body connection theory.) My heart passed and we threw the condoms in the garbage. I wish I had cut them up into little pieces and then burned them in a cathartic bonfire, or at least mailed them to a country with limited access to birth control; it would have made a great story.

We were lucky: we got right to it and got pregnant within three months of trying. I felt amazing. The shift from cautious to all-out-cardio quickly killed my breakable -complex.

And then I was back to fragile with a teeny tiny embryo in my belly. I was happy and comfortable; I couldn’t ask for anything more. My life was perfect. I didn’t feel completely healthy when I stopped taking the heart medication, but as soon as that embryo burrowed into my uterus lining, I started feeling better and better.

But it was a long journey. I was still classified as sick, because I was diagnosed with Fibro, and I still sometimes think this is the story of somebody with life-long health issues.

It got worse – scary worse – before I woke up in the hospital as a new person. I’ll tell you all about the bad stuff soon.

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.

Just Jenn

I spent a lot of time in that sleep study lab because it was the Heart Function Clinic by day.

Every month for three months, and then every other month after that, I walked through the hospital doors with my heart in my throat, wondering if it would be the month I got the bad news. I thought I'd have to have surgery. It never occurred to me that the bad news was over.

They kept track of my weight because swelling is a bad sign with cardiomyopathy. After I weighed-in at the start of each appointment, they hooked me up to the ECG machine.

I had to get undressed in one of the sleep labs, put a hospital gown on backwards and lay down on the bed. When Nurse Heart came in, she would stick about five suction-cup-thingies on my chest, stomach and ankles, and then plug them into the wires that fed my heartbeat to the fancy machine.

If the printout looked like a mountain range with peaks destroyed by a crashing plane, then I still had PVCs. As I laid on the bed, waiting for Nurse Heart, I would wish the pilot had finally checked his engines before boarding his plane, but those flat mountains stayed with me for a while.

And then I’d have to tell Nurse Heart how many pillows I slept on and if I had been out of breath enough at night to wake up. She would take my blood pressure while I sat on the bed, and then again when I stood up.

Dr. Heart would listen to my chest, check my ankles for swelling and ask me the same questions.

They were both really good at soothing my fears when I was brave enough to talk about them. Even if there wasn’t an answer, Dr. Heart had a way of focusing on the now and on the good possibilities.

He was never impatient with me or dismissive. I didn’t know him before the PVC discovery, but I think he’s the kind of guy who would have treated me with respect no matter what.

Cardiomyopathy changed the way many people treated me. Suddenly, I wasn’t wasting their time.

Since I was diagnosed, doctors have been calm and sympathetic. The lab techs taking my blood, the receptionists at the cardiogram clinic and the volunteers at the Heart Function Clinic have all been extra-nice.

Friends and family members who knew about my heart got really serious about my health. The light well-that-sucks-but-at-least-you-won’t-die attitude was abruptly changed to an oh-shit-this-is-not-good attitude.

People were worried; people were just-in-case-nice. As in, just in case you die; just in case you’re life-changing sick.

I wanted to have a life outside of nice and away from the hospital. When I took off the gown and didn’t talk about it, I was just Jenn.

The Downside of Health

I get a little nervous every time my heart skips a beat.

When I’m just sitting at my desk and my heart starts acting wonky like it did the other day, I start thinking about the worst case scenario.

What if my heart is messed up again? What if the fix was only temporary and not effective anymore?

If I knew that I was going to be sick again in a year or two I would live a bit differently.

I would go to Ireland this summer to see where my grandpa’s family came from. Then I would fly over to France, Spain, Italy, Switzerland, and other cool countries in the area.

I would push myself harder on the treadmill, get to a run faster.

I would get a tattoo of a heart somewhere on my body. Maybe I should do that one anyway.

If I thought my sickness would kill me, I would quit my job to spend every day with my daughter, and my husband would hear cheesy love proclamations twice a day. Why can’t I do that now?

Knowing how hard it was to think when my heart was sick, I would get off my ass and re-write my second novel. I shouldn’t need the fear of losing my wits to do that. But I would be less afraid of looking like an idiot, and more afraid of losing my chance.

Here’s the thing: I could get sick again. It might not even be my heart next time. In fact, I will get sick eventually and die. But I’m feeling a little complacent these days. I’ve lost the edge that came with finally being healthy. Health is expected now, just two years after maybe never being healthy again.

Now and Then

Last night I went dancing for the first time in three years. It was so much fun, but definitely won’t become part of my weekly routine.

It’s never been my scene, and I really don’t fit in there now that I’m a new mom. When my friend and I first got to the bar there were two glasses on the dance floor. I picked them up and put them on the ledge.

Instead of cheering for the girl who climbed on the table to dance, I was worried that she would snap a heel and fall on her face. The bouncer pulled her down before she killed herself.

My sense of humour doesn’t translate well on the dance floor, either. I didn’t get any laughs when I cast a line to reel people in. I thought it was hilarious!

Don’t even ask what I was wearing.

I’m cool with the fact that I’m not invited to the Swanky Club for being so bar-awesome. It’s not me, but every once in a while I like to have that kind of fun.

If I wasn’t cool with that, I could work hard to fit in. I could buy bar clothes and learn how to put on make-up. I could practice dancing in my spare time. I could look up some lyrics online. I might never become the swankiest club hopper, but after a while I would be a clubber.

That’s what makes it difficult to know who people are; who they really are.

Am I the person that I am every day, or who I am today? Was I a different girl when I was sick, because I was sick for so long that I became that person; or am I the healthy woman, because it’s basically the person I started out as?

Maybe I’m a woman who used to be sick, because cardiomyopathy changed me just enough to be considered a major life event. I sing in the shower again now that I’m healthy. Is that the difference between happy and sad Jenn?

Am I who I’m trying to be, who I want to be, or who I am right now? Am I my past? My feelings? My thoughts?

I wasn’t myself for seven years. That’s a long time to be lost. I started a few new jobs, made friends, wrote a book, bought a house, got healthy and had a baby. If I wasn’t me that whole time, who was I?

Does that decade of my life count as a night-at-the-bar-type experience?

You're Special: Advocate

This is the first part in a series.

I’ve had the pleasure of meeting many doctors. To a sickie, doctors are priceless, but they can also be assholes. Don’t bother reading the glib magazine articles about getting the most out of an appointment – I’ll tell you what you really need to know to navigate the tricky terrain of communication and ego. My specialty is specialists.

Take a buddy. Don’t ask your husband/mom/friend/brother/daughter-in-law to join you because you need a second set of ears, because ears are overrated. You need an advocate in that office; a reminder to the doctor that you are a human being who knows a handful of people, and those people care enough about you to take time off work.

It sounds sick, but doctors find it easier to put you in the whacko column if you’re alone, and when you’re in that column, you’re dismissed. Once that happens, even when you sound smart about your symptoms, you’re considered a potential hypochondriac, and when you can’t find the words to describe the fact that the world looks purple today, you’re a pushover.

There might be a reason nobody cares about this whacko, he might think. Going alone to an appointment has cost me. Don’t let it cost you. Find someone to take time off work for you, even if it’s inconvenient. If there’s absolutely nobody who can make it, consider bringing a cut-out of Neil Patrick Harris.

But seriously, the person sitting next to you across from the doctor’s desk sets a tone: this illness is real and it has affected her family. If you’re lucky enough to have a choice of people to bring, pick the smart, empathetic one who knows all of your symptoms and how each one has made your life shit.

Prep this person beforehand, so you present a united front. Give your husband permission to act as your advocate. Tell him it’s okay to interject with symptoms you forget, or with stories about how bad it really is, if you’re one of those people who would rather keep the mood light.

The more chances you give the specialist to see you as a person, not a file, the more likely you’ll get the care you need.

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.

Work It Out

Exercise seemed impossible when I was sick.

My simple stationary bike taunted me every night after work. Eight hours of sitting at a desk left me too exhausted to cook dinner and do the dishes, but I was supposed to find enough energy to work out. Whenever I’d walk by the bike to sit on the couch, I would hear my doctor’s voice.

You should get thirty minutes of exercise a day. At the very least.

I felt guilty when I didn’t get on the bike; like I wasn’t doing everything I could to get well. So, more often than not, I’d peddle as hard and fast as I could for as long as I could stand it. I usually lasted ten minutes at the lowest tension.

My legs were always heavy as hell about half way through my pathetic attempts at cardio. And by the end, I was winded and red-faced and when I walked to the couch to rest, it felt like industrial mop buckets filled with water were strapped to my feet.

There were nights I resisted the pointless exercise. By the end of the week, when my fatigue had glazed over me and I was more zombie than human, I looked at the bike, heard the voice and replied, fuck it. It can wait. Rest is more important right now.

Working out was torture. Now that I’m well, I look forward to working up a sweat on my treadmill. Not because I’m a fitness freak, but because I can. I feel exhilarated after a forty-five minute stride. It’s amazing.

I have a small, plastic, anatomically correct heart hanging from my treadmill to remind me why I walk. I’m working up to a full on run. I want to put as much distance between the sick me and the well me as possible. I want to run while I can.

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.

Dear Heart

Now that I’ve shared the depths of my depression, I want to share my joy.

For about a year and a half I was terrified that my heart wouldn’t be well enough to keep two people alive. I thought my chances of safely having a baby were slim.

I was wrong. I did get better and I did get pregnant. Sometimes life turns out better than you expect.

Before I knew everything was going to be okay, I spent a lot of energy trying to figure out what I did to break my heart. Nobody knows when my heart function started to falter.

When I was younger, I smoked and drank too much, as teenagers often do. I kept on smoking for ten years. Worse than either of those things, I held onto my bad feelings and internalized them. If sadness or anger were ever in short supply, I borrowed from my friends.

I lived with a heavy heart for years.

Seeing my heart on the ultrasound screen brought tears to my eyes because I knew I had neglected him and taken him for granted. I felt guilty for being unaware of my heart’s struggle, for adding to it.

In a mad bargain for wellness, I wrote my heart a letter. I asked for forgiveness. I promised to pay proper attention and to eat less salt. I told my heart that I would fend off stress if he would just keep pumping.

I’d like to believe he was listening.

Are you there sorrow? It's me, Jenn

When I was diagnosed with cardiomyopathy, Dr. Heart told me I had a thirty-three per cent chance of getting better, a thirty-three per cent chance of staying the same, and a thirty-three per cent chance of getting worse.

That left me with a good chance I wouldn’t have a strong enough heart to ever get pregnant. Hearts in pregnant bodies have to work harder than other hearts.

I stared at the glow-in-the-dark hands of my biological clock for about four months before writing this diary entry:

1:50 am – I am struggling with the possibility that my heart will never be able to handle pregnancy.

The waiting list for adoption is long. Baby = forever; five-year-old = five year wait.

Adopting a child from another country costs at least $25,000 - more than the down payment of our house. We’ll never have that kind of money.

1:54 am – I have to brace myself for the possibility that my heart cannot handle pregnancy. Otherwise, I might break down.

I am rigid. I wonder if this is related to my heart condition. I wonder if everything is somehow connected to my heart.

Tim’s right… this is ridiculous. I can’t use the limited information that I have about my body to hold myself hostage. There is still life to live. It’s not about waiting for test results. But it’s hard to ignore that flashing red light.

I’ve been cautious ever since the episode of ‘vertigo’ in the shower. This has possibly saved my life countless times. My body was systematically shutting down to stay safe. Survival instinct kicked in, stopped me from feeling too much and realising too much stress, because my heart is bogged down by stress.

In the end, my fail-safe will be total shut down.

Can death possibly be a survival mechanism?

Double Up

When I was diagnosed with cardiomyopathy my husband and I had a heart-to-heart with Dr. Heart about babies.

Now, I`ve never been the girl who gets gushy over babies.  They cry, they puke, they poo and they can`t make jokes.  I was convinced I would be the one to break a baby if I had to hold her.  Despite all of that, I wanted my own, but not until I was about thirty.

A few things changed since I made those plans.  My biological clock started ticking very softly when my mom-in-law was sick; we thought about starting our family so she could meet her grandbabies.  And when she was dying, we really thought about it. 

It turned out to be a good thing that we decided not to bump up our baby plans, because they didn`t find the cardiomyopathy until three months after she died.  If I got pregnant with a sick heart, I`m not sure we would have made it.

The clock got louder when I had my first snuggle with a baby.  He nuzzled into the hollow of my neck and I melted.  He was so beautiful and helpless, and he wanted me to love him.  Me.  With my past.  With my flaws.  My love was enough for this small baby.  And his love for me in that moment was so innocent and pure, with no guilt, no demands, no judgement. 

I didn`t know babies could show love until that moment.

The rapid tick-tock shocked me when Dr. Heart very gently told us that we could not get pregnant while I was taking my heart pills.  He asked what birth control we were currently using (The Pill), and told us why it was important to double-up (always use condoms or spermicidal foam as well).

The meds I needed to fix my heart were known to cause major birth defects, including under-developed skull, and could also cause foetal death.  My own heart pulled the plug on my clock.  But it was one of those old-fashioned wind-up clocks.  Daylight charged the glow-in-the-dark hands; it was the only thing I could see as I was trying to fall asleep every night.

With All My Heart

27 per cent, eh? No wonder I couldn’t clean the bathtub or sweep the floor without needing a nap. Suddenly my breathlessness and fatigue and weakness made sense.

Seriously, I couldn’t clean the toilet and wash the dishes in the same night, so I would do one on Sunday and the other on Monday. Working full time exhausted me. Thursday was my favourite day of the week, because by Friday I was too tired to appreciate the upcoming weekend.

I sit on my ass all day in an office.

When my doctor called me at home to tell me the diagnosis, it didn’t sound like she was smiling. She was sporting her calculated-calm voice; the one devised to dispel panic. Unfortunately for me, that tone now creates a knee-jerk anxiety response.

The Diagnosis. Dun, dun, duhhhhh!

My heart skipped a beat (wink, wink) when she told me that I had cardiomyopathy, aka heart failure. Heart failure? Wait, I’m not dead. Nothing has failed. But it was failing. That’s why I had to start the medication right away.

As far as diagnoses go, this one wasn’t the greatest. First, there’s the fact that my heart was messed up. Hearts are serious. Second, cardiomyopathy literally means: hey buddy, you’re heart isn’t working but we aren’t sure why. Could be deadly, sucker.

Long way from Fibromyalgia.

I don’t want to give any Fibro sufferers out there false hope that they, too, could have a possibly deadly heart condition. It’s just what happened to me.

After I got over the initial shock of going from Fibro to cardiomyopathy, I spent lots of time thinking of heart puns. For some sad reason, the only thing I really came up with was What? I heartly know you.

I didn’t die. Obviously. Well, I guess I could be my ghost. But I’m not. So what’s left to write about? My heart. Figuratively. I became quite depressed when Dr. Heart told me things that no woman wants to hear.

Love,

Jenn

Premature Ventricular Contractions

It’s common for a healthy woman in her twenties to experience some PVCs – extra, abnormal heartbeats that begin in one of the ventricles. That’s what my doctor said when I was rejected by the blood bank for having an abnormal pulse. She wasn’t making it up; it’s true.

It’s not healthy to have more than one hundred PVCs a minute.

My family doctor was smiling when she told me what the sleep study found. Don’t judge her for giving me bad news in a light-hearted way; in this case, bad news meant good news. Knowing that my heart was working so hard to pump blood through my body, she had no doubt in her mind that I was tired because of the PVCs. My other symptoms (pain in shoulders and neck, headaches, blurred vision, etc) could also be related to my heart issue.

Woo hoo, there was finally an explanation! Unfortunately, we also had to consider why my heart wasn’t pumping well. PVCs are a symptom, not a disease, and the cause ranges from easily fixed (viral infection) to deadly (Hypoplastic left heart syndrome).

Dare I say, the news gave me pause.

The tests started right away. Remember that bulky piece of equipment I had to wear? It was a Holter monitor, a device that recorded my heart beat for 48 hours. It confirmed the PVCs that I had the night of the sleep study weren’t a fluke. My heart had thousands of extra beats over the course of two days.

Then Dr. Heart (my favourite specialist so far) put me on a treadmill and found out that my heart didn’t freak out under stress. He thought that was great news, but needed to do one more test just to check something out, as doctors often say.

I’ll never forget my first echocardiogram (basically an ultrasound of the heart). Many people cry when they see a growing fetus on an ultrasound screen. I had to choke back tears when I saw the image of my heart working so hard to keep me alive. It was obvious, even to me, that my heart was sick.

I described it to my family by doing a dance. I stood tall, stretched my arms high above my head and pumped my legs up and down as fast as I could. That was my tired heart. Except my heart couldn’t fall over when it was too tired to keep going. Well, I guess it could, but I’d be dead.

There was one more test before I got the news. An ECHO is requested by doctors to look at the structure of the heart, and it can also measure an ejection fraction (how much blood pumps out of the left ventricle with each heart beat). A MUGA scan is a more accurate way to measure the ejection fraction (EF).

A normal EF is 55 to 70 per cent. Mine was 27 per cent.

Dr. Brain

The first real clue about my illness came from the sleep study, not the MRI, though it was a neurologist who told me about it.

As soon as the sleep study results were available, before I could see my family doctor, I saw Dr. Brain. When my husband and I sat down in the waiting room, I was convinced that I had Multiple Sclerosis. Turns out, I was one hundred per cent wrong.

We were lead into a small room after waiting for about twenty minutes. If you compared the layout of the room to a tennis court, the doctor’s chair was sitting on the net, and his large desk, two chairs, a sink and counter top were squished in the back court.

The neurologist tested my reflexes and tickled my feet to watch how my big toe reacted. He did some other basic physical tests that I can’t remember. Then he asked me to sit down.

Dr. Brain didn’t sit behind his desk to give me the news. He sat on a stool beside his sink and stared at my file when he told me that I absolutely did not have MS. I was stunned.

There were no lesions on my MRI. It was clean.

I started to grasp for answers, because weird things had been happening to my body for five years and I was sick of it. I asked him about my symptoms and I pointed out the similarities to MS.

He started to blow me off and I got angry. I raised my voice enough to disturb his assistants working in the next room.

I would be embarrassed about my behaviour if it hadn’t forced the doctor to look up. The tone of my voice snapped him awake. Wait, he might have thought, this is a real person.

Dr. Brain softened. When he looked up at me he showed true empathy. He, of all specialists, is used to people who have gone for years without a diagnosis and without relief. And that’s when he told me there was something odd about my sleep study results.

Focus on your heart, he said. There are too many extra beats.

Feedback

Hi guys,

Thanks for reading my blog so far. Your comments have encouraged me to keep writing. In some cases your feedback has helped me understand why I do the things I do. Check out the comments on Portable Fences

I'm about half way through my story now, and very close to revealing the real diagnosis. But before I write about it, I want to get some feedback from you.

A co-worker friend who reads my blog recently asked me when she was going to find out what the heck was wrong with me. She wants to know right now!

What about you guys? Do you want to read about the diagnosis in my next post or two? Do you have any questions about Fibromyalgia or my symptoms or my thoughts and feelings before I move forward with the story?

Let me know. Don't forget, you can leave an anonymous comment, or you can send an e-mail to mckay_jenn@hotmail.com

Talk to you soon,

Jenn

At A Loss

Some people are social butterflies. I am a snail. Or maybe a tortoise. I’m not slimy, but I’m not convinced that slow and steady wins the race, either.

My misguided philosophy as a teen was shit or be shat on. Don’t steal that; I want to put it on a t-shirt. The attitude served me well in grade nine when we were all sizing each other up. Looking back, I see why adults tried to enlighten me about the colour grey.

Grey is beautiful. It makes my eyes pop. And there’s that whole vast-world-between-black-and-white thing, too. We all live there, though we don’t always know it or like it. Murder can be self-defence, stolen food can be fed to hungry children and adultery can stem from a loveless marriage.

Grey can be dark. It’s why gay couples are still denied the same rights as other couples in many parts of the world; it is racism passed down from generation to generation; and women in burkas.

Those abstract ideas and those moral decisions, easily debated over coffee, were the closest I got to grey in my teens. I never had to shoot a gun in self-defence or fear that going bare-faced would evoke the inevitable lust of a man.

I had the energy to think about that stuff because I thought daily life was black and white. She was a bitch to me, so I’ll be a bitch to her. He lied to me, I have to dump him. I skipped too many afternoon classes and I was kicked out of biology.

Then, on the cusp of adulthood, I got sick. A grey-green twister ripped through my life, pulled me into the air and kept me suspended for years. On my best days, I didn’t have the energy to maintain a social life and on my worst days, I didn’t have the capacity to understand intentions. It was hard to make new friends.

I’ve always been a tortoise, though, so I can’t blame my illness for that, just for the stagnant years in my twenties. I was a bookworm, not a hop scotch princess. And when I was seventeen, my girlfriend told a woman that Biggie’s song ‘Me and My Bitch’ was about a dog. I whispered to her, “really?” She rolled her eyes and answered, “ No, not really, Jenn.”

I had a long way to go before I got sick, and I’m way behind now that I’m better.

The twister left me at a loss. My teen strategies are pathetic and ineffective. When I’m insulted, I know snide comments might announce my frustration and possibly make me feel better, but won’t resolve anything. The urge to insult back is the karma crusader in me. Since I vowed to fold the cape, I have to come up with a different strategy.

Grey currently represents a mystery illness that takes away my brain and body functions one after the other. I am terrified to go back into that dark funnel. But I’m not sure that black and white exist.

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.

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.

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.

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.

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.

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.

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?

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?

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.