The Heart is a Muscle, Redux

April 4, 2007

It was just over two and a half years ago that we learned that my nephew, Tanner, has Duchenne’s Muscular Dystrophy, and that he will die from it. He was not quite five years old at the time. We were devastated. Wrecked. Heartbroken.

What very nearly got lost in the distress of those days and weeks and months was this: the decision that my husband and I had made, just weeks before learning of Tanner’s diagnosis, to start a family of our own. I say very nearly, because that decision wasn’t forgotten about entirely: it was pushed to the sidelines, too troubling a project to continue to consider openly. Too troubling, because with Tanner’s diagnosis came provisional diagnoses for both my sister and I: we were likely carriers of the gene that causes DMD, and as carriers, any male children that we might bear had a one-in-two chance of inheriting the fatal condition.

My husband and I immediately ceased all talks concerning a family of our own. We needed to come to terms with Tanner, first. And we needed to learn more about what it might mean if I carried the gene. I underwent genetic testing, and genetic counselling. Months of it. I learned more about what I already knew: that if I did carry the gene, as was likely, I would likely pass it on to any son that I might bear, and that he would die from DMD. I also learned that as a carrier, I would have diminished muscular capacity myself. Weaker lungs. Weaker heart. That I had a history of respiratory weakness that worsened with illness was regarded by my geneticist as a very bad sign.

At the time, the physical weakness that I might suffer due to such a condition seemed unimportant. I was concerned for Tanner, and for any future children I might have. When a close friend expressed horror at my announcement that Husband and I had begun reconsidering starting a family – her argument, that I was irresponsible to consider bringing such a child into the world, and that I would no doubt be compromising my own health to do so – I was unmoved. I would love any child that I might bear, no matter how brief or limited his life. And I would risk my life to have that child. I would give my life for that child. I knew this, in my soul and in my heart.

My tests came back more or less negative, in a complicated odds-on-odds-off genetic calculation that was at once reassuring and confusing. And we went on to have WonderBaby, and have been celebrating life ever since. But I’ve never forgotten my commitment to do anything and everything for my children, including risk my life. And I’ve never forgotten the fear that attended the making of that commitment. But fear, now, is entirely bound up in love, and so much more complicated.

And so when it felt that my heart was giving out earlier this week, the fear came rushing back in a torrent muddied by love and desperation. I was terrified. I had overtaxed my muscles, I thought; the geneticists had erred or misinterpreted (as they did with my sister), the muscle that is my heart was failing, I would die, and for all of my commitment to giving everything, everything, to the care and love of my baby, I would, in the end, lose her by losing myself. The hours between the first moments of the attack and the moment when the ER doctor said your heart looks fine were as terrifying (more than? a calculation that I cannot make) as the darkest moments of my troubled pregnancy.

It seems that I have nothing immediate to worry about, for now. Whatever happened, it did not damage my heart, it did not weaken my heart, it did not hurt my heart in any manner other than figurative. My heart, they tell me, is strong. The attack was not heartburn, nor was it anxiety (which I knew before I even hit the ER – I have extensive experience with both these plagues), but neither was it cardiac arrest and that, my friends, is tremendously reassuring. There is still, however, enough unknownness to leave me discomfited, to keep me gripped, however loosely, in the bonds of anxiety. I hope that it turns out, after more poking and prodding, to have been a muscle cramp, one that has nothing whatsoever to do with dystrophies or other muscular degenerations. I hope that it’s nothing, nothing at all. I hope that all of this hand-wringing is just that – the hand-wringing of a pathological hand-wringer.

Because although my heart remains undamaged, it was weakened, just a little, by that frenzied little dance with fear. I would give my life, in a heartbeat, for WonderBaby – my own life is, in so many ways, much less precious to me than is hers. But to be pulled away from her precious life seems unbearable, in a way that I hadn’t quite fully appreciated until that tremor of a heartbeat rattled my soul. That other parents face or have faced that rattling to the full - feel that pull to its end – and live on with their broken hearts still beating astounds me and humbles me.

Gots to be gentle with my ma. I needs her heart.

I just need some rest now. Will resume normal blogging activities soonest.

Also, I am so sorry for scaring anybody the other day with my ohmygodamidyingiamsoscared post of the other day. But it was so necessary to vent my anxiety, to put trembling hands to keyboard to make the minutes fly by more quickly and to slow the pounding of my troubled heart. That you were all there, listening and – so immediately – whispering soothing words of comfort, was so, so wonderful.

Such a community. Whatever else we might say about it – and we said so, so many things this past weekend, the little group of us in Kentucky – it is this: it is intimate, and warm, in the most wonderful and unlikely ways. I’ll have more to say about this when I’m back on my fingers.

Until then, just this: thank you.

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    kgirl April 5, 2007 at 8:39 am

    Rest up, mama.

    Nancy April 5, 2007 at 9:19 am

    Huge sigh of relief here.
    Sending lots and lots of love.
    Now go rest, please.

    Anonymous April 5, 2007 at 10:21 am

    oh catherine i’m so glad you are okay.and its so alright to tell us those great fears we’re all here and listening.and wonderbaby is as adorable as ever. LAVENDULA

    pkzcass April 5, 2007 at 10:29 am

    I’m so glad you’re feeling better, albeit uncertain about what’s actually going on. So strange to be reading your blog because I’m going through almost the same thing this week myself. Have had major palpitations and skipped a few beats; the doc thinks it’s my physiological way of reacting to stress. Further testing is underway but EKG was normal. My thought this morning (and every day) was: “If I can make it another 15-20 years till my boys are adults, then I’ll go peacefully and without a fight.” Just have to get them safely into adulthood…

    I will, and you will too.

    nomotherearth April 5, 2007 at 11:24 am

    Glad to hear it! Now we can all breathe a little easier. I’m thinking that eating a lot of Easter candy is much needed, along with rest.

    scarbie doll April 5, 2007 at 11:25 am

    Dude, that sucks. I think it might be your body giving you the signal to slow the fuck down. Honestly, I watch all your accomplishments and as an over-achiever myself, I wonder, “How does she get it all done?” All the accolades and adoration in the world, not worth your life. You’ve got fans, you’ve got success, what more could you be striving for? Time to chilax on the world domination front a bit.

    Glennia April 5, 2007 at 11:54 am

    Reading this with tears in my eyes…you sum up magnificently how many of us feel facing mortality, when there is so much more to do and see and be. So happy for you and your family that it is not something more serious (and for us as well). Big cyber-hugs to you.

    mamatulip April 5, 2007 at 12:35 pm

    You write so beautifully.

    As you know, I was thinking of you. I still am.


    Anonymous April 5, 2007 at 12:57 pm

    You might have your doctor check your gall bladder. It sound crazy, but gall bladder attacks are often described (by women in particular) as “feeling like a heart attack.

    I’m glad your heart is okay.

    Elizabeth April 5, 2007 at 1:07 pm

    I’m glad to hear it’s not serious, but oh boy, what you have been through. Please rest as long as you need to, and Twitter me any time!

    Multi-tasking Mommy April 5, 2007 at 2:10 pm

    Very scary! Glad you have your blog to open up to and share your thoughts/feelings, I hope it does help, even a tiny bit.
    I am thinking of you and hope that you are doing better soon.

    Jackie April 5, 2007 at 4:10 pm

    Delurking to tell you I just read your last few posts and am sooo glad that you’re doing OK!
    Get plenty of rest and relaxation -know that’s not always easy with a little one but try! :-)

    Mary G April 5, 2007 at 4:18 pm

    I’m so glad your heart is *fine*. I’ve been there with the scare stuff and it makes everything look far away down a long black tunnel.
    Your little one is so, so gorgeous, and I am sure you will have a long life with her.

    Momish April 5, 2007 at 4:57 pm

    I am so sorry to hear about your trauma! I am glad that you are OK! I hope they figure out what happened soon so you can have peace of mind. I can only imagine what it was like as I recently went through a similar scare about my mamogram. That time waiting is a bitch and totally screws with your head and heart in ways that no human should have to go through.

    Big hugs!

    Jenifer April 5, 2007 at 11:31 pm

    I just read the last two posts. I am keeping you in my thoughts and prayers.

    Your honesty and bravery about this will help pull you through. That and Wonderbaby, she is all goodness.

    mo-wo April 6, 2007 at 1:24 am

    There is an excellent passage on death in Your Children with raise you. Have you seen that book?

    Connects with much you say here and other thoughtful bits in different directions.

    Granny April 6, 2007 at 3:34 am

    I’m late getting to everyone these days it seems.

    Hope they figure it out soon. Meantime, you’ll be in my thoughts.

    Mommato2 April 6, 2007 at 9:20 am

    I am so glad you are o.k. You did a good job of putting into words what all of us Mommies feel – doing anything, even giving your own life for our children.

    Be well, and as always, special thoughts to your darling nephew.

    Kate April 6, 2007 at 9:55 am

    Just catching up with you and I’m so sorry to hear about what’s going on! How scary. Hope you are doing better. There’s nothing fun about being rushed to the ER for heart problems. Hang in there.

    jen April 6, 2007 at 10:07 am

    oh Bad. I know.

    I know. So glad your heart is intact in the physical sense, and the emotional may have taken a hit, but i see it beating with vigor there too.

    Lizzy April 6, 2007 at 10:40 am

    How scary!

    Hope you are upandatem’ STAT!

    wordgirl April 6, 2007 at 11:01 am

    Something in my computer has not allowed me to comment lately and I’ve wanted to offer words of reassurance and comfort. You should take it easy and rest your heart and everything else. We’ll be here when you get back.

    Pattie April 6, 2007 at 11:22 am

    Oh Catherine…I have been out of the loop this week. I just read through your previous posts. I am breathing a sigh of relief for you that everything turned out ok. Motherhood certainly is a constant reminder of our mortality. Rest up in KY….

    flutter April 6, 2007 at 7:41 pm

    we love you, be well.

    aimee / greeblemonkey April 6, 2007 at 9:57 pm

    I am very sorry I missed the other post and was not there to lend support too. But I am very glad it seems that things are (relatively) OK. I know it sounds trite, but hang in there, kid.

    Alex Elliot April 6, 2007 at 9:59 pm

    That must have been so scary for you!
    I hope you’re doing better.

    soleclaw April 7, 2007 at 1:45 am

    Chin up, and relax as much as you can. So glad to hear you’re well. :)

    Izzy April 7, 2007 at 3:43 pm

    What a rollercoaster ride you’ve had to endure. I’m glad you’re okay and I’m sending thoughts of relaxation and peace of mind your way.

    cape buffalo April 7, 2007 at 10:16 pm


    so glad you’re okay…

    Raji April 9, 2007 at 2:40 am

    I am so sorry that you had to go through these heart wringing moments – but glad that finally you were able to hear good news.

    I have been reading your blog for a couple of months, not sure how I came here though….I don’t read that many blogs. I havent posted before though, but am compelled to now (like that’s a bad thing!!)

    I had to face the same decision that you talked about thinking of IF you were diagnosed as a carrier of DMD.
    You said “When a close friend expressed horror at my announcement that Husband and I had begun reconsidering starting a family – her argument, that I was irresponsible to consider bringing such a child into the world, and that I would no doubt be compromising my own health to do so – I was unmoved. I would love any child that I might bear, no matter how brief or limited his life. And I would risk my life to have that child. I would give my life for that child. I knew this, in my soul and in my heart.”

    I was so moved by those words, even though it was the complete opposite of what I decided.

    I was 25, married 3 years when my mysterious throwing up and huge loss of weight for the past one year, was diagnosed as a rare congenital condition where there is an absence of or very limited number of cells in the intestine (in my case thankfully confined to the duodenum alone) which basically was now not allowing food to move down beyond the duodenum which after enlarging about 10 times its normal size finally gave up and thats when the throwing up started and the consequent loss of weight.
    My mother had the same condition and died after multiple surgeries when I was 7, and I obviously inherited it, though none of this was known till I was diagnosed at 25. I didnt even have any symptoms before that.

    To cut a long story short, I beat all the odds, since not able to eat orally and dependent on IV and direct to intestine nutrition for 2 years, my weight rapidly dropped to about 60 pounds and I wasnt expected to surive, leave alone survive and make it through multiple surgeries, the last one being a 3 hr surgery which was itself experimental in nature with the limited knowledge at hand.

    I survived and am fine today, though there is no guarantee that the symptoms might not recur if the problem reappears due to some reason.This was in 2003.
    In 2004, I made the decision not to have a biological child precisely because I don’t want to take any risk that the child might be born with the same congenital condition ,which my mother had and I have too.
    For my mother it proved fatal and for me it was a trial by fire. The agony my Dad and husband went through was unimaginable.
    There was no way I wanted to willingly take the risk (25% was what they told us after genetic counselling) and also, since its such a rare condition, there are no tests available which can diagnose this in the foetus stage itself. (even if I were of the mind to terminate the pregnancy which I wouldn’t have)
    And also, (which was part of my husband’s reason for deciding not to have a biological child) the thought that if my pregnancy accelarated the problem once again, and I might not be there for my child at the end of it….that thought was too much for me to bear.
    Kudos for your bravery though, and I am glad that you didn’t have to worry about Wonder baby!
    We adopted a baby girl last year and she is now almost 2 and I give thanks everyday for the miracle that brought her into our lives. I completely understand when you talk about the fear that grips your heart when you think of losing her by losing yourself – its there at the back of my mind….


    TB April 9, 2007 at 11:20 am

    My sisters both suffer from a hereditary genetic defect that I somehow managed to avoid. We did all the testing twice before we started trying for a baby, and all the tests say I’m fine. That doesn’t stop that little voice in the back of my head from piping up every now and then – what if they were wrong?

    I’m sorry you had such a scare. I hope you’re feeling immeasurably better now. Take care of yourself.

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