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?

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.

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.

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.

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.