Wednesday, June 4, 2008

"Sick Girl"

I apologize in advance for the fact that this is an extremely long post. But there was a lot in “Sick Girl” by Amy Silverstein that I identified with.

Some of the books I’ve talked about are certainly more current.

This is the first book in a while I’ve been able to get into. Let that tell you what it will…
“Staying alive in this body has become an obligation for me that continually raises the question of why. Why continue in a perpetual lifesaving marathon when there is no possibility of a happy, healthy end? The answer to this question appears to me only in blurry glimpses from time to time – mostly in the calm short breaks between illnesses” (3).

Is this what Doctor C meant by saying I could lead a “fairly” normal life? That a few months out of the year I will feel practically normal again and then the rest of the year I’ll suffer through all of the symptoms of my illnesses?

I know that we’re still trying to work out the kinks of this treatment plan. Yet, every time I think something is working well and might do the trick, it stops working.

Unfortunately, I’d be lying if I said that the above quote from “Sick Girl” didn’t resonate with me. Because it does. There have been and continue to be days of pain and fatigue that make me stop and think, What’s the point?

But then I think about the fact that I’m young and have way too many unfinished things that I have yet to do. But it’s really hard when you’re trying to make an invisible illness visible, trying to make those around you understand:

Do you know what it’s like to expend energy you don’t have to expend?

To be so tired everyday that you want to curl up in a ball and cry?

To have your body feel like your bones are crushing in on your organs and to be told that for you, this is the new “normal”?

You know, I realize what’s happening to “us,” isn’t taking place in a vacuum. Even when our friends and family don’t acknowledge it, it’s having an effect on them, too. Obviously, there are some people in our lives that refuse to acknowledge what’s going on.

Sometimes I want to tell people that I’m worried about myself, that I don’t know how long I can stand to go on like this, that I don’t like doctors or relying on other people and that all of this really sucks!

But I don’t.

I stand back, resolute or stupid – take your pick. I pretend like life is normal and everything is fine. But I’m reminded constantly that it’s not.

How many times do I have to list these symptoms until all of this becomes real? This is really happening to me…

And I think that’s what scares me the most. That this will take over and a “sick girl” is all I’ll become...

“Only in retrospect would I recognize that it was youth, coupled with the absence of serious childhood illness, that could dull down the medical danger radar in a girl to the point where peril hardly registered at all. Add to this an obliging physician with the same defective detection system, plus a penchant for the jolly, and what you’ve got is a recipe for massive denial that cooks up into a ticking time bomb” (15).

Man, oh man, does this sound familiar?

At some point I have to let myself off the hook about letting others dictate to me that what was happening to my body was nothing more than a little stress and constipation. Constipation in my muscles and bones? I don’t think so. Until it spiraled out of control and my body hammered it into me that something was definitely very wrong.

But then there’s a part of me that thinks, How could I have been so damn stupid?

Again and again we are told to trust doctors and do what they tell us. And yet, we are also told to ask questions, seek second opinions, and not stop until we are satisfied with the answers we receive.

You know, I was living truly on my own for the first time. No way was I going to admit that, for whatever reason, that I couldn’t handle life.

“Smart, savvy patients are not born; they are made – sometimes unwillingly” (48).

So true. You either become a passive actor in your medical care, and therefore, your life; or you attempt to walk in step with your doctors, even though one of you will always remain ahead or behind.

“I realized from the earliest stages of my illness that the people around me responded better when I stayed strong and kept all the ugly details to myself” (50)”

This is true, too! What else can I say about it? It seems to me that the people around us are better spared the gory details, even though we have to live with them every single day. It doesn’t really make any sense.

But I think that people are content to think of me in a very different light than I see myself.

“I was a scary story, no doubt. My illness had made me into one of those people who serves as the protagonist in the kind of thank-god-it’s-not-me tale that will run through entire communities and even through young doctors’ minds’” (59).

Okay, so my situation is NOT that bad. But my mind keeps coming back to the fact that for my rheumatologist, I’m sort of an anomaly. It probably gives Doctor C great pleasure to occasionally see someone under the age of 60. In fact, I sometimes worry that Doctor C might be getting too much pleasure out of it. Like there’s some sick fascination. Or maybe Doctor C doesn’t really think about my case at all. While we’d all like to think that we are the only patient our doctors’ have or that our doctors are so intent on helping us that they lie awake at night thinking about us, we all know that’s not quite true.

“Medical emergencies – I would learn on that day – do not cause the more ordinary aspects of life to disappear; not even for a moment. For very sick people like me, the unimaginable gets played out right alongside the completely familiar. And sometimes it is the memory of the small benign details, rather than the scary big picture, that has staying power” (63-4).

I too, know what it’s like to try and make the invisible visible. That is sometimes far more painful than the pain we are trying to make people see.

And she’s right. You think that when something life changing like this happens, all of the little crap falls away. Not so. It almost becomes more amplified, like it has become twice as important, because you might miss something, let something slide.

“Because I thought too much. And thinking too much leads to knowing too much. And knowing to much would make it impossible for me to live in carefree denial” (143).

That’s me. I read too much, know too much. And you know what, my doctors don’t like it. I know they don’t. But what choice do I have, when they give me information selectively?

“…those who face serious illness early in life, and those who avoid medical tragedy straight into old age. At some point, it seemed, everyone would have their body stolen from them – and, with it, the ability to set themselves apart from medical misfortune. But timing is everything; the longer this loss can be delayed, the better. Being able to hold on to ones easy health, I came to believe, was the mark of true good fortune. The very lucky get hit later, simple as that” (182).

If you have your health, be thankful. It’s pretty crazy when you think you have your whole life ahead of you to dodge bullets. And then you find out that you don’t. This is an understatement, but it’s a pretty big disappointment.

“I was here – sorting through my life. Looking for reasons to put medicine in my mouth, and finding enough of them to be able to swallow” (291).

I think the thing for me that is the scariest right now is the fact that this is my body… on drugs. Without them, I don’t want to imagine what life would be like. I’ve been there, done that, and it wasn’t pretty. And while this is a fairly imperfect existence, it’s better than not existing at all (well, I can say that today – it seems like it’s going to be a good one).


While “Sick Girl” got some pretty bad reviews, I thought it was pretty good. There was a lot that I identified with, as a young woman dealing with illness. Silverstein’s panic about prednisone – What if I get fat? – I’ve been there. Unlike her, I didn’t fight my doctor tooth and nail about it – I took it – but I also didn’t get billed a “fragile” and “noncompliant” patient, either. My fragile noncompliance gets played out here, rather than in my doctors’ offices.

A lot of people have said that this book is an overly negative one. I firmly believe however, that everyone has their own way of coping and dealing with things. If you want a happy book about organ transplant or illness, this is not your story.

This is one of the reasons I believe that books about illness that include only one story are not the most useful.

Silverstein tells the story of her parents leaving her in the backseat of a cab, after she is told that she might eventually need a heart transplant. I had to question whether to believe this story. It seemed so mean, so cruel to me, especially coming from parents. But I guess we have to believe her story, every part of it, because we’ve got nothing else to go on...

She also talks about her stepmother who only cares about whether she’ll be able to play golf or not.

As a question I posed in an earlier post, Silverstein is writing her story the way she sees it. And this is the fatal flaw with all of our stories. Those who we deem as villains or heroes may not see themselves the same way we do. As I’ve suggested before, I have a feeling that any of my doctors would find my story skewed. I’m sure that the way I’ve written them is not the way they would have written themselves.

Aside from the above criticisms, I was struck by the fact that very early on in her story, she is guided by, supported by, the love of a man, who despite it all, becomes her husband. Her portrayal of Scott really frustrated me.

If I had someone like she did, there from the very beginning, I would treasure that, hold on to it, and never let it go. I don’t have the companionship of someone telling me I’m beautiful, even when I’m bloated from the prednisone and feeling like crap, don’t have any makeup on, and am wearing the requisite sweatpants and t-shirt, what has become my uniform these days. Even the effort to look like crap is often too much.

I guess that’s it. I’m done with “Sick Girl”.
(Silverstein, Amy. Sick Girl. New York: Grove Atlantic, 2007)

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