Saturday, October 30, 2010

The Witch of Endo, part 1

This just in: It’s really hard for me to ask for help. I’m sure you’re shocked.

I had a midterm due at the beginning of the week; I have been dealing with pelvic pain from the endometriosis and feeling crabby and useless. I had every reason to ask for an extension on my papers but…I felt like a loser. I didn’t want to ask. It was hard to admit that I *couldn’t* do it. I hate “can’t.” I hate it in myself. I would never judge another person who asked for an extension on a paper because it felt like their pelvis was eating itself (and, actually, with endo, that’s not far from what is actually happening) but oh no, not ME. I can do anything, dammit. Except I can’t. It was humbling to look at my notes strewn around me, books piled up, Word doc open and ready to go, and realize: I can’t fucking do this. I need to go to bed.

I have two choices when I’m in pain and have a paper/project due: I can grit my teeth and work through the pain, or I can take a painkiller and work through the narcotic haze. The pain pills work pretty well but they make it hard to focus, retain information and express myself coherently. In short, everything I need to write a paper.

I have learned the hard way that the pain will not just go away because I ignore it.  Ignoring it will make it worse. So although I am capable of working through it, I will pay for it when the work is done. Often that payment is more than I can afford and --listen to me! I feel like I have to justify my decision to not stay in pain. It’s a little excessive. I have such little sympathy for myself.

There is some crazy part of me that believes that if I wish hard enough, or do the correct breathing exercise, or stop eating dairy (for the record, I’ve tried: it’s bullshit) or something, this disease will go away. So if it doesn’t go away it must mean that I don’t want it gone enough. Some strange part of me thinks I should be able to wave a magic wand and make it all go away: some part of me believes I can do anything, so why can’t I do this? It’s like the dark, distorted side of empowerment. I’m always hearing how tough people are, they beat cancer, just fucking kicked it to the curb. I don’t even have a life-threatening disease and I can’t kick it out of my own way, never mind the curb. It makes me feel inadequate and weak. 

Now I know that makes no sense, but at the same time I don’t know it. I remember being at the pre-op appointment before my last surgery, going though the litany of diet, meds, everything from the previous few months, trying to figure out where I went wrong, when my surgeon, who has been my doctor, therapist, advisor and friend for the last 20 years (yeah, I’ve had surgery often enough that I’m buddies -–good buddies-- with my surgeon)-- looked up from his note-taking, waited for me to stop, then said “Saum, this isn’t something you did.” I burst into tears. Because I needed to hear it.

I don’t have magical powers (Or if I do, they’re not that kind of magical power, but only good for conjuring 80s power ballads and rain). What I do have is a disease with symptoms I can’t predict or control. I have issues with giving up control –- and, baby, it is allllll about giving up control.

I also have a TF who rejected my request for a 48-hour extension on my midterm but instead gave me 5 days... and said if I needed more time it was not a problem. I burst into tears then too. Luckily I was just reading an email so there were no witnesses.

Something else my surgeon said that day has stuck in my head: Men are stronger, but women are tougher. They are also tougher on themselves. I don’t know if that’s true, but it certainly resonates. I doubt that it has anything whatsoever to do with my gender, but I have high standards for myself: I push myself, I love a challenge, and I do stuff that I am afraid of doing. I don’t give up. I think those are all good things. But, I also judge myself very harshly. I would never speak to another suffering creature the way I speak to myself.

Sometimes I think I’ll never be enough for myself. I construct and overcome hurdle after hurdle: going back to school wasn’t enough, I had to get into Harvard. Getting into Harvard wasn’t enough, I had to maintain a 4.0…and ok I’ll admit it, there’s times that I think my 4.0 at Harvard is worthless because all the really smart people are over at MIT.

There is a part of me that, assuming I get an A in this class, which I will move heaven and earth to achieve, will feel like I don’t deserve it because I got an extension on my goddamn midterm.

It’s telling that while pain is part of my everyday life, it’s not something I’m comfortable talking about. It hurts everyday, and I don’t just mean physical hurt. I have not ridden my horse in over a month. I live to ride, and I cannot ride.

I have blogged about pain it in the past but it’s something I struggle to express. I avoid writing about it. I avoid talking about it. I’m not registered with the disability support office at school although I ought to be. Ignoring it doesn’t make it go away, but it does keep anyone else from knowing about it, from witnessing my vulnerability. I want to be tougher than I am.  I want a life that is miraculously free from “can’t.” I don’t want to need help.

But I’ve realized, while writing this, that needing is good for me (sorry, Buddha). It opens a part of myself that would otherwise remain closed. It humbles me and introduces another kind of empowerment: one that acknowledges that maybe I can do anything…just not on my own.

I titled this post The Witch of Endo, part I The “part I” is a promise to myself. I will keep writing about this. I will keep needing, too.

Thanks for your help. I appreciate it. I couldn’t do this without you.


  1. It hurts me to think you're in pain. I'm happy you're writing about it. You need to.

    First, you're a good writer and writing about this helps people. Second, you need to get it out -- and you are.

    I can't imagine what it's like to be you and go through this. The whole thing is insane. It makes people insane while they're going through it -- not really crazy, but a crazy when a part of your mind takes over to protect -- like you write about in that link to pain.

    It's brave to ask for help. It's also damn hard. You are no less of a person for doing it. It's easy for me to say, I have the same issue.

  2. Hmmmm - I wonder where all that comes from. Notice I didn't end that question with a question mark.