The Things I Don’t Share

In Uncategorized on July 5, 2013 at 1:48 pm


You would think writing about such personal things: Mastectomies, Hysterectomies, Multiple Sclerosis, to name a few, that I wouldn’t hesitate to continue my history of the epic over-share, but truth be told, surviving all of those things makes me look like I’m hot shit.  Like somehow I’ve cornered the market on survival and that makes me brave.  But here’s what I don’t tell you, because I’d rather you didn’t know how difficult all of this has been nor the toll it has taken on my psyche.

A few months ago I was asked to do some research for a play on which I was working. (still desperately avoiding ending a sentence in a preposition.)  There is a monologue that describes lying on the forest floor, wanting more than anything to get up and climb the trees to get to what he perceives must be golden eggs within a nest at the very top.  But the trees have smooth trunks with no knots so climbing is out of the question and there is nothing to do but lay on the floor of the forest and look up, longing for tree tops forever out of reach.  One of the actors had asked that I do some research on types of trees with trunks that can’t be climbed.  Again and again, I came across images that were from the perspective of the forest floor.  The height of the trees, the sliver of sky, the impenetrable nature of nature.   Completely losing myself in Strindberg’s metaphor- you know, like you do, I felt an ache that I work very hard to submerge.

It has been a few months and that play has come and gone and two more are running, and another is rehearsing and I seem to have remained on the forest floor.  I just celebrated being one year out from my surgery and while I am physically strong and back in order, emotionally I have changed.  Really changed.

I am disinclined from participating in my life.  There.  I said it.

My son and I receive invitations- a lot of invitations- and for his sake, I make a point to say yes.  And I’ve even tried to apply this when he’s with his dad and I’m flying solo.  I FORCE myself- and I am not exaggerating in regards to what kind of rally it takes to say yes and then, on top of that, to actually show up.  But each step of the enterprise is like fucking hell and all I want to do is put on yoga pants and watch re-runs of Bones and Castle.  I’ll admit, once I arrive somewhere, anywhere, I usually have a good time but I’m generally exhausted from the self-torture parade that has preceded showing up.

Now, I know you’re thinking, “well, she’s just depressed.  Maybe she needs meds, or a shrink, or both?”  And maybe that’s true.  But I’m on meds- lots of them- to treat mood instability that comes with both MS and menopause.  I’m also taking hormones, leading me to have to take blood thinners because hormones can cause blood clots and because I developed one after my surgery blah, blah, blah.  I am a walking pharmaceutical experiment complete with $1500.00 worth of co-pays every month.  So I don’t think meds are the answer.  And a shrink, well I’ll ask you to refer back to the amount of money I pay out for those meds so unless someone wants to trade me therapy for theater tickets, that’s not going to happen.

So instead, I read.  And read and read and read.  I read books about how shit falls apart, about how to put shit back together, about how little shit matters, about shit being nothing more than our perception of said shit.  Nothing helps.  It eases the panic for the time that I am reading, and then it floods back only now I’m more keenly aware of how far down I’ve fallen and how much energy it takes to get back up.

And I cry.  And cry, and cry and cry.  I admitted to my co-workers this week that I don’t put on my make-up until I get to the office because I usually cry on my way to work so what would be the point.  And not because I’m going to work.  Even in the midst of all of this, it’s never hard to rally to go to the office and get immersed in something other than my own crap.  I know this job, I’m comfortable knowing that I can do it and do it well.

Now, I am not keen on blogs that are sob stories about rich people problems.  And while I’m not a rich person, I am the first to recognize the first world nature of my complaints.  This is part of THIS blog because this is the person I have become after undergoing all of these surgeries.  I used to want to be in the world.  It didn’t bother me, going to parties on my own, going anywhere on my own for that matter.  But I have changed.  I am far more emotional, erratic, angry.  And I expend almost all of my extra energy (of which there is very little) trying to mask this truth from my son because I am desperate to be a person who lives in the world, for his sake and for my own.

Now, here’s the other awful truth that my mom (damn her ability to see and tell it like it is) pointed out to me yesterday.  I’m pissed off because I’m fat.  And please don’t say, “don’t use that word”- it’s my fucking figure, I’ll refer to it as I please.  And this has very little to do with the surgeries or the MS.  Because I have always struggled with my weight, I was warned, by more than one doctor, that losing weight after menopause was going to be far more difficult.  While I’ll admit that the majority of the reason I haven’t lost weight is because I eat anything that isn’t nailed down, I have discovered, in all truth, that even with an appetite that is markedly decreased based on physiological changes, I gain weight with such speed that my snail pace metabolism is simply left in the dust.  And it sucks.  Because it’s true, I’m inclined to hide when my weight goes up, which brings me back to yoga pants and Bones repeats.

So my theory is, if I say this, or rather write it, it becomes an undeniable fact with which I will have to deal.  And I know being sad isn’t brave or resilient, but I can’t get up off the forest floor without first admitting I’m stuck down here.  But I am looking up, so that’s something.

  1. ugh….I hesitate to write this because…well, I feel the exact same thing every day. every day. exactly.

    So, though I want to leave this reply and let you know that you are not alone in this. It is hard for me to write and admit this shared experience.

    I wish I had an answer, any answer. But I do believe in my heart of hearts that looking up is a start. That it will lead to standing up. Which will lead to dusting off. And then hopefully to..finding a ladder.

    • I wonder if the people who have read this are as surprised by my post as I am by your reply. Your goal was to make me feel less alone- you achieved that in spades. Thanks for stepping out on this scary ledge with me- having pressed ‘publish’ this morning, I know how hard it is to put these things out in the world. And if I find a ladder, I’ll share.

  2. Amy, I love the pure honesty in all your blogs. You pour out your soul. And I am right there with you, feeling your pain and emotions through your struggles. I feel I can relate to you through your writing, and feel the pain and sadness which brings up emotion within me, as I recall the times I too have experienced similar agony regarding my own personal trials, struggles and life’s disappointments throughout my life. How many of us also put on the false face of happiness on the outside, while all along we are crumbling and broken inside. Going through the routine motions of life keep us moving, even though within we don’t know how we can face another day. I also love how you conclude with a message of Hope (by looking up). This Hope is what helps encourage us to continue forward in our lives. And to reach for answers to our problems. That there is a way out of the lowest points in our lives by looking up for the next step to take us to a higher, better level of thought and being. A satisfied, happy, existence. Seek and ye shall find!— As always, I am grateful for your sharing your thoughts with us. I look forward to all of your blogs and am thrilled every time one of your blogs shows up in my email. Thank you.— May you find what will give you peace and calm.

    • Thank you all. For encouragement, for back up and for expressing things within your own lives that are as personal as this post was. Sydney, I’ll be thinking of your niece and hoping that she can put her young life back into the land of the living. There is so much we miss if we can’t walk out the front door. And Martha, thank you for continually seeing hope even when I’m not seeing it myself. Love to you all.

  3. Amy,
    every once in awhile I catch your blog and feel like I am catching up with an old friend (I guess that goes without saying). But after reading this, I thought I would share the ordeal my 13 year old niece has just been through. She has Chiari Malformation and just underwent brain surgery to correct what has developed into an extremely painful problem with the base of her brain, neck and spine. I am not telling you this to feel sorry, as you too have been through some painful situations. But, over the last two years she has slowly receded from society until she now does nothing but lay on the couch, no school, no activities, nothing. The pain was misdiagnosed over the last two years with doctors basically telling my sister that she is a terrible mother and allowing her daughter to fake symptoms to get out of going to school. That wasn’t the case, the pain was real. However, now my niece has just spent the last two years wasting time on the couch, the forest floor, waiting to get up. And because she is so young, I am afraid she won’t know how to get up and reach for the tops of the trees. I too hope both you and she can find what gives you peace and calm, not for your family or mine, but for yourselves. So that you can enjoy your life and who you are.

  4. Allow yourself to enjoy the little things. Like sorrows, they also keep coming. If you can string enough of them together, then you always have something to try and balance against times that are difficult and sad. Most of the time.

  5. You meant PHAT with PH right? I love this one Amilah. And you know what? I bet we could find someone who would trade theater tix for therapy. I’m on it! Will report back. xo

  6. Amy, I’m willing to bet that others are thinking the same thing I am…I care so much about you, but I don’t know what to write, so I won’t write anything…There is so much that I could write, but it wouldn’t capture what I really want to say, which is: I hope that knowing how much you and Santi are loved can serve as a salve to your pain. Nat

    • Nat,
      Thank you so much for the reply and for the love. I think I forget that there are people out there in the world sending good thoughts our way even when we’ve been out of touch. I hope the continuing adventure is going well and that you and all of your boys are settling into your new life many, many miles away. much love to you all.

  7. Amy,
    Do you remember when I left college, essentially slipping away when no one was looking? You just described it to a tee. Except at that point, it was so bad, I was face down in the dirt. Everything hurt. Breathing, moving, smiling, my body and my mind. Every day was hell and I had no way to fix it. Somehow, I found a way to roll over, to stare up, to breathe with a little less pain, to soak up the little bit of sun that can reach the forest floor. Eventually, I got up. There were drugs (the pharmacutical kind), lots of taking myself apart and trying to make the pieces fit back together without too many spare parts, buckets of tears, a ton of falls, some back to face down, some just taking a knee. But I kept getting up, sometimes quickly, sometimes at a snails pace.
    My life over the past few years has taken me apart piece by piece. I fought it. Probably longer and harder than anyone in their right mind would have, but I fought it. I lost myself. I lost my passion for many things. I lost my sense of self pride I tried so so hard to recover. I was embarassed, ashamed, angry, scared. In January, I found the final blow and found myself curled in the fetal position, once again looking up at the tree tops, wishing, dreaming, praying to find a way there. I found my voice and was strong enough to call an end to the fight. My mask has been on so tight for so long, especially with my children, that I forgot I could even breathe without it. There are days when I feel so horrible about myself, about who I am, leaving the house is painful. But I do it. Like you, I cry on my way in more often than not. Most nights, my pillowcase is wet as I finally drift to sleep. There is something different this time though. I want to get up, and I want to fight. I miss me. I miss laughing. I miss feeling happiness, I miss feeling wanted and loved and valued and making others feel the same way. So every day, I am going to fight to get back on my feet again. It isn’t quick, it won’t be easy, and god knows I have a million pounds of baggage strapped to my ankles, but I am getting up & finding a way out of this again.
    You have always amazed me my friend. You were the place I turned so many years ago when it just got too bad. I hope you have those in your life who can do the same for you now. I so appreciate your honesty, your risk taking and you ability to poke fun at the things that go bump in the night. Keep going, Miss Amy, just keep going.

    • You are extraordinary, not only because of who you are and the overwhelming goodness and kindness you put into the world, but also because you are willing to bare your soul right along with me. Thank you for that- for so many things…I love you- and i will do just that- keep going.

  8. Love your writing. Love this sentiment, because…yeah, totally been there, and God forbid anyone says it out loud. People say just get over it, it’s weakness, you’re not fat, blah, blah, blah. They don’t know, or worse, they do know, and they are perpetuating the notion that having a disinclination to life makes you a lesser person. I wish I could make your pain easier, but I hope you truly realize you are not alone. You have inspired me in ways you’ll never know.

    • Thanks Jody. It seems sometimes the hardest ones to write are the ones people need to hear the most. I miss you- but speaking of inspiration, anytime I think something will take too long to achieve, I think about you making the decision to go to medical school, and that question goes right out the window. I hope you guys are well. xoxo

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