If you’ve been reading for awhile, you’re familiar with the fact that I very nearly died after having my babies and later found out I had a previously undiagnosed heart defect, left ventricle non-compaction syndrome. Further genetic testing revealed that my heart defect was due to a genetic mutation, which led to genetic testing for both Etta and Claire, too. I really really hoped neither one got it, but there was a 50/50 chance they did.
It turns out those odds were exactly right. Etta has the mutation, Claire doesn’t. The good news is, both girls have already had echocardiograms, and we know they don’t have my specific heart defect. But, the mutation can also cause other forms of heart failure, so she will need lots of monitoring to make sure her heart is staying healthy. We see the geneticists later this week, and then we will be referred to cardiology. That’s all we know for now.
All my life, people have looked at my long legs and asked me if I’m a runner. While I have an uncle who’s an ultramarathoner, I have never, ever liked running or really exercise of any sort. For most of my life, I thought this was because I’m just wimpy, lazy somehow. I could never complete the entire President’s Physical Fitness Test mile without a large bit of walking. Pretty much all physical activities left me easily tired and winded, so I never really played sports or learned coordination or balance. I can’t really stand on one foot. I am MASSIVELY clumsy.
Three years ago, I learned the real story behind my fainting Victorian lady’s constitution: I have a heart defect. Exercise has always left me winded and fatigued because my heart was already working as heard as it possibly could just keeping me alive. Asking it to go above and beyond was just not gonna fly. Finally, just the stress of keeping me and two other people alive sent my heart into actual failure.
Now my heart is able to function in a normal range because I take some pretty serious medications. But I still feel weird when I exercise (or visit a high altitude locale) because my medicines keep my heart rate very controlled– for most folks the goal of exercise is to get your heart rate up, but mine’s not really going to go up, no matter what I do. Even when I stood on a stage and talked about the scariest thing that ever happened to me, I worked up a good sweat but my heart didn’t beat a bit faster. Instead, when my heart rate should be climbing, I feel like I always have: easily winded and overtired.
Still, I know that if I want my heart to be healthy in the future, I’m going to have to figure out how to exercise. I don’t want to, because I, shockingly, don’t like doing things I suck at. I don’t enjoy being the flailing person at a gym. I project all sorts of thoughts into other people’s heads about how insane I look and how pathetic I am getting winded just barely jogging. Not to mention, finding time to exercise when you have twin toddlers is tough.
For the vast majority of people, competitionin exercise is not fun. It’s no fun to compete if you know you can never win. It’s no fun to be on a team if you know you’re bound to let everyone else down with your performance. The rhetoric of ‘more, better, harder, feel the burn’ doesn’t work for who those of us just want to use our bodies and enjoy being in them.
I remember really liking yoga for a while there. I think that’s something I might be able to achieve via videos during a couple nap times per week, but I can’t give up all my nap times, because those are also usually my writing times. I also don’t mind walking, and think maybe I could make that happen a couple of times per week too. I’m not likely to take up running or anything else hardcore, but I can move more so that I can take care of my heart and feel more connected to my body, to enjoy being in it.
In the meantime, if you see me struggling up a hill in the neighborhood know that my heart is trying really hard to be in it.
Today is National Wear Red Day for the Go Red for Women campaign from the American Heart Association. I’m wearing my red, not just because I think heart health is important, or because I know that heart disease is the #1 killer of women (heart disease and stroke kill 1 in 3), but because this fight is personal for me: I’m a survivor. Not just in a Beyonce sense, but as a literal actual survivor of a congenital heart defect, a cardiac pregnancy complication, and heart failure.
On April 1, 2012, I was three days post-c-section. My recovery had gone slower than most, and I was still in the hospital, a fact for which I now thank God. In the wee hours of the morning, I woke up and finally felt strong enough to try to walk the few feet from my hospital bed to the bathroom. It felt triumphant. My husband assisted me, one of our new babies nearby in a bassinet*. But as I inched my way back to my hospital bed, every inch of my recently-ripped-apart abdomen screaming in pain, I found it hard to catch my breath. “I can’t breathe,” I said to Jon. He’s an ER doctor, and his mantra is generally “if you can talk, you can breathe,” so he helped me back into bed and told me to relax and catch my breath. But even after sitting down, it was getting harder and harder to fill my lungs with air. Continue reading “Why I Go Red for Women: I’m a Survivor”
Like a lot of people who have spent their lives loving his work, I’ve been pretty sad about Robin Williams’ death. He was just a bright light in the world, and now that he’s gone, things seem a little dimmer. He will be missed.
I’m glad that his tragic suicide is being used to shed some light on the very real problems of depression and suicide. It’s not enough to replace his light, but it’s something.
I have been concerned by some of the rhetoric I’ve seen though, even in well-meaning statements. Mental illness is an illness. It’s one that others often don’t know about, because of things like stigma that keep people from reaching out. But it’s an illness, same as any other chronic condition– with something like diabetes, your pancreas doesn’t work right. With mental illness, it’s your brain. You can’t cure any chronic disease just by “knowing how loved” you are. Or by “knowing God.” Or by “choosing joy.” Continue reading “the light and the dark”
Many of you are probably aware of the fact that I almost died three days after I had my babies. I experienced an often-fatal complication called peripartum cardiomyopathy, something I had never heard of until it happened to me, but according to The Daily Beast is actually on the rise. The first sentence of that piece, where the woman describes feeling like her head was being held underwater, just felt so true to what I experienced as well– I often describe it to people as feeling like I was drowning inside my own body. As my heart went into failure, my lungs literally began to fill with fluid, and I could actually hear it crackling as I struggled to breathe, before I was sedated and intubated and moved to the ICU. Thank GOD I was still in the hospital 3 days postpartum, because there was a code team ready to save me. If I had not asked for one more day inpatient to work with the lactation consultant on breastfeeding, I could have very easily been at home, where I might have died. (After my near-death, I was put on some serious medicines which meant my breastfeeding days were over, but you could say that my desire to breastfeed saved my life!) Continue reading “Call Professor X, I’m a Mutant”
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