Surfacing After Silence

Life. After.

Defective Identity

Love your heart

I’ve been having a rough time lately.  About eleven months ago I found out I had ARVD and then had surgery to have an ICD placed.  About eleven months ago I was told I would never run again.  I wouldn’t ride my bike.  I wouldn’t swim laps.  I wouldn’t drink as much coffee.  I wouldn’t drink wine anymore.  I shouldn’t drink alcohol at all but sometimes I have a beer.  I would take medication to help suppress the arrhythmias.  I would have a surgery every five years for the rest of my life to replace the ICD.  Potentially, I could be looking at a heart transplant.

I feel somewhat defective.  Please don’t get me wrong–I am thankful I’m alive and that they finally figured out what was causing all the problems and although we can’t treat it, I can take measures to avoid as many arrhythmias as possible.  But I’m also extremely angry because I can’t help but think, “there is so much I can’t do and will never do again.”  Things that were important to me.  Things I had come to define myself by.  After so many years of defining myself by the anorexia, I finally had a healthy relationship with exercise and could define myself as a “healthy, active, fit, and strong young woman.”  I was a runner.  I was an athlete.  And now those things are gone.  And I want them back.

What’s made it harder is that this is a taboo subject.  When I am with friends here, I can bitch and moan about my workload as both a student and teacher and dish out the department gossip and gasp when I hear what so-and-so had the balls to do and how unfair that is.  But if I mention the H word (heart), there’s this weird, awkward silence that wrecks the conversation.  Can I blame people?  Who wants to talk about mortality at our age?  We’re not supposed to be dealing with this stuff yet.  We’re still in school for goodness’ sake.  Life and death are supposed to leave us alone while we’re in school.  And I should just be thankful I’m alive and, overall, healthy.  I am both thankful and angry, and few–very few–people are okay with that.

And then yesterday I was told I couldn’t donate a kidney because of my heart.  My cardiologist said I could.  But the transplant coordinator said I couldn’t.  I have two perfectly healthy kidneys and only use one and someone else could possibly have used one of them.  I’m aware of the risks of surgery.  And yes, it would be elective on my part.  Except it’s not all that elective when someone else’s life could be saved.  It’s not a difficult decision at all for me.  My conscience said that only option was to say, “yes.”

I expected to hear I couldn’t donate because my genetic markers were off.  I was not prepared to hear I couldn’t donate because of my heart.  I know this is unreasonable and I know it’s not rational, but my initial response was, “this is just one more way my body is defective.  This is just one more thing I cannot do because of my heart.”

I’m not asking you to convince me otherwise.  My wise mind knows I am not defective.  That doesn’t change how I feel.  And I am only now, eleven months after my diagnosis, learning that I need to grieve what was lost.

I am also learning that defining myself as a healthy, strong, active, fit young woman had one hell of a flaw: the definition was dependent on my physical body, just as when I was anorexic, the definition was dependent on my physical body.  This year I haven’t been able to say, “I’m a teacher.  I’m a student.”  I was letting my body heal.  And felt lost in the process.

Having an eating disorder is focusing all your mental energy on your physical body, naming its flaws and hating its curves and dreaming of ways to change it and yet still taking pride in the amount of control you have over your body.

I think I was on the right track, initially, in learning who I was without the anorexia.  And then this heart diagnosis came and knocked me flat on my face and brought all my attention right back to my body.  I have learned that self-definitions should not depend on your physical body.  I think that it’s healthy to appreciate your body and things you can do because of it, but your identity cannot revolve around the physical, because what happens when the physical is taken away, against your will?

And so I start a new process of self-discovery.  Of learning how to define myself. Of answering the all-important, “who am I?”

Perhaps I should start with, “Who do I want to be?”


May 11, 2010 - Posted by | Body Image, Eating Disorders, heart, identity, recovery | , , , , , , , , , , , , , ,


  1. Hey Lex,
    I think what you are going through is totally normal. I was angry for about 2 years after my heart surgery. And you are correct in saying that it is a taboo topic to discuss. Everyone wants to hear how happy you are to be alive, how grateful you are that they caught the problem and now you are “safe”. But, becuase they cannot fully grasp what we go through, they cannot understand how simplistic and unrealistic that is. That we look at mortality on a daily basis as a potential, not as some far off idea that might happen someday when you’re old so why worry about it now.

    All I can offer you is understanding and the knowledge that is does eventually lessen- the anger, the depression, the jealousy that is inevitable when looking at “normal heart people”.

    xoxox Hang in there.

    Comment by Kate | May 12, 2010 | Reply

  2. I love that your question is “Who do I want to be?” not who do I have to be. I hope that you can find peace in your body, your post is beautiful–thank you for sharing it. I have had similar experiences with my hearing and knowing that it is okay to feel anger, depression, mad, sad. Normal. And, it has what has helped me heal.

    Comment by imaginenamaste | May 16, 2010 | Reply

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