Tag Archives: transparency

Empty …

Empty Chair
photo by Nathan Wright – words from “Empty Chairs at Empty Tables” from Les Miserables

There’s an empty room inside me. Or tomb, perhaps. Isn’t a tomb typically a large vault for burying something? That might be more apropos… The deed is done, the surgery complete, my insides successfully excavated – much to the delight of my doctor. Tomorrow will be a week that I have been free of all worries uterine… And yet, today it really hit me, as I began to have what would typically be pre-period ovary pain, that my body is no longer as it was. (I know, it’s too much info. But please bear with me.)

I am officially incapable of having children. Boom.

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There should be joy, some will say, while others probably wish I would just.STOP.talkingaboutit. Except that I can’t talk about it. Not really. Not in anything more than abstracts and factual statements concerning daily health updates to those that care to ask… My mouth freezes and my tongue ties and my eyes fill up with tears each time I try. And what good would it do anyway? What has been done cannot be undone. Like one of those hidden pictures where you try and try to see the image you’re not supposed to, yet once it becomes visible you can’t go back to seeing it the way it was before. I’m the after image now. This version of me can’t be unseen, and yet I feel completely invisible.

My family is going to read this and tell me, “You can always talk to me!” or “Please talk to me!” But it’s not that simple, you see. Especially with family. And of the very precious few that I’ve felt capable of reaching out to, only a couple have been there and made time for me. Pain compounding hurt compounding heartache is not a good recipe, so here I am. Hoping for some sort of solace in writing it out. Hoping to find some lifeline that will pull me out of this flash flood I’ve been swept away by. An opportunity has died, and with it, a part of me as well. It hasn’t been my focus, though it has been incredible painful whenever the thought slips in… No, I’ve merely been trying to fight off ME/CFS flare-ups caused by the hysterectomy, trying to fight off cold and sinus yuck from my weakened immune system, deal with aches and pains from having all my insides shoved here and there. And each day has been determination to heal and feel better, but today all that got drowned out with the rising tide and now I’m just trying to survive. Praying someone will care enough to notice and hoping no one really will because then they’ll pat me or pity me or something equally as difficult to bear and I just can’t handle that right now. But the problem is, I don’t know what I *can* handle. Strength has never been hard for me – I’ve always been strong in every way. This journey has defied all I thought I knew, however, and I am lost… And every time I try to ask for directions, I end up worse off for my pains.

Music is usually my hiding place for all things. So, maybe if you want to help, you can offer uplifting suggestions or something. My heart keeps getting drawn to what my brother would call ‘sad bastard songs’. Great way to feel understood… baaaaaad way to pull myself up from the dark!

 

photo by Ian Espinosa - words from "Flood" by Jars of Clay
Photo by Ian Espinosa Words from “Flood” by Jars of Clay

I’m not even sure what I hoped to say with this post, except to echo my original hyste(rical)rectomy post “Please Be Patient With Me“, and honestly, there may be one or two more before it’s all said and done. With that said, I think I’m going to stop rambling for a while and go lie back down for a bit… In the meantime, if I don’t reach out to you, it’s probably because I can’t right now and it’s nothing personal.  And if I *DO* reach out to you, please be gentle with me – I don’t know how long this will take or what will help me through, but I’m doing the best I can.
Be good to each other… this world is tough enough as it is~

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Please Be Patient With Me

I’m not sure what I want to write. Not even sure it’s a good plan to be writing at all… but my heart is full of so much right now that it’s making me sick to my stomach and causing a throbbing ache in my head. This will probably be pretty disjointed as I just try to purge some of the excess, so please, try to be patient with me!

Recently, I’ve fallen off the map for a lot of people. One of people I am closest to told me a few days ago they sometimes wished they could disappear. I cynically responded, “You and me both!” But here’s the thing – in a way, I actually have… My life has become such a balancing act of managing stress, paying bills, going to work, controlling ME/CFS symptoms, putting on a ‘happy face’, and trying to meet expectations of others that I’m exhausted before most days are halfway through. Evening finds me stumbling along in a similar pattern night after night pretending I’m getting along just fine while inside… well, inside I’m not. For those that have watched me slowly disappear, I hope you know me well enough to realize it’s not a conscious choice and will accept my heartfelt apology for not being very present. For those that’ve been inundated with my problems and insecurities, I hope you continue to find grace to deal with me while I navigate through it all. If you’re one of those I’ve entrusted with fears and concerns, you’re in an unenviable place, but the only true thing I need from you is your presence and support. That’s all. For various reasons and in different circumstances, criticism has been piled upon me left and right until I’m suffocating from the lack of value I feel… So the vulnerability and extremely low self-worth seeping from my pores? It’s authentic and deep-rooted. If you’re not able to hang with me through this, then perhaps we were never as important to one another as I thought. Trying to open up to someone and being shut down, ignored or belittled really makes it that much more of an uphill climb and I need you on my team right now – it’s small enough as it is! If you care about me *AT ALL*, please don’t turn away. Regardless of what I might tell you in my happier (or delusional) moments, I am not fine. Truly. And my fervent hope is that you *do* care and I might somehow learn to find my value again by seeing I also have worth in your eyes.

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For those not in the know, I’m going to try to be brave and open for a minute in case it might go the extra mile in helping someone else one day. My year has been okay so far. Much better than a lot of people, so I try not to complain. Particular incidences, however, have sucked and made everything feel it’s going to shit. (Sorry nanny, if you’re reading this.) It seems it all happened around the time I had a bad month with a dangerous infection behind my tonsil that left me unable to talk or swallow – it hurt to merely breathe. The doc took one look at it and within 15 minutes had surgical items set up in the room to perform what Bobby dubbed my “barbaric John Wayne procedure” (with no more anesthesia than a shot and very little coddling) that involved a scalpel and the roof/back corner of my mouth. I won’t share more detail, but it was pretty brutal stuff that I was told most patients don’t handle well and often pass out from. (I, thankfully, did not, but it sucked all the same.) Around the same time I found out I’m going to have to have a complete hysterectomy. Many women I’ve talked too have said, in almost identical tones, “You’re so lucky! I wish *I* could have one!” And I understand. Honestly. But here’s the thing – I don’t. I never wished that. And although the intervening months have helped me come to a uneasy and precarious acceptance of the situation, I cannot stress enough that it has been devastating to me in ways I can’t put into words. True, my marriage has been rocky and my health is bad, but I always thought I’d have children… Even as I got older and it became an increasingly tiny possibility, even as I accepted in my head that it was never going to happen… even as my husband and I tried to console one another and find joy in other things, a part of my heart failed to accept the terms. So, finding out my uterus is enlarged and riddled with enough fibroids to rival the size of a 3-4 month pregnancy has forced my heart to acknowledge what was supposed to be a foregone conclusion. Something in me died when I heard that. Something that will never be fixed and never be reclaimed. Between that moment and this, I’ve been accused of being combative, lazy, selfish, pessimistic, stupid, and told I’m taking too much time to deal with the situation and need to get on with it… I’ve heard it all. And sadly, it usually comes from a friend not foe. Someone said, in a frustrated and cynical way, that with my astounding tendency for bad luck the hospital should have extra blood on hand for transfusions during surgery. They laughed, I laughed, the conversation moved on, and then I came home and cried. Because that’s truly the way it typically goes. That’s not a pity party speaking, either. CFS has taught me to prepare for the worst case scenario and be THRILLED if things work out even slightly better.

In the midst of all this, I’ve lost the desire to be social. I’ve shut myself off from people that might otherwise help me through. I’ve opened up to all the blackest, darkest thoughts that can crowd my mind and found rare moments of solace – when my sister fiercely said, “that is so fucking unfair!” or my sis-in-law’s eyes filled with tears at the news because she immediately knew where my heart fell in this matter. I’ve tried to “self-medicate” with denial or anger, quiet acceptance… I’ve watched my blood pressure slowly increase alongside my depressive anxiety states, attempting to counterbalance those negatives by being more active while also carefully monitoring my ME/CFS symptoms so as not to push myself into a crash. The last few months have been pretty tense and the juggling act is not for the faint of heart. Yet, quite a few of the people know the situation seem to expect I can handle it all on my own. It’s not that my exterior isn’t tough and my determination stout, but this is harder than it looks…

Plenty of people will read this and it’ll be the first they’ve heard of the matter – some of them the closest people in my life. It hasn’t been in me to talk about it except in the rarest moments – my energy has been diverted toward existing. Toward battling the agonizing pain and exhaustion those blasted fibroids put me in at least two weeks of every month. Toward maintaining a job and as much of a household as I can manage. Toward outward appearances to avoid 1000 questions and painful conversations. Realizing at every turn that I’ve done a piss-poor job in almost every area of my life thus far – relationships, household, workplace, kindness and grace. So, I ask again – please be patient with me…

I know this hasn’t been the most articulate post and it may or may not even fully make sense. It was necessary, however, for me to write it out somewhere. And while my instinct is to keep it private, with so many of my other health struggles, I can’t help but think someone out there might need to know they aren’t alone. Someone might read this and discover another person truly understands… Another woman’s life may be on the edge of a huge change that feels like a period rather than a comma or semicolon of life, and it may give them comfort.

Please take care of each other… and try to remember you can’t tell a person’s struggles just by looking at the expression on their face.

The Mask of “I’m Fine”

When this blog began I decided to only write that which is true.  Truth as it applies to my life and my circumstances.  I wanted transparency instead of platitudes or cliché.  To approach topics without shying away from painful admissions, if relevant, and to hopefully inspire others (and maybe inspire myself) to be brave.

Perhaps I was overreaching and the loftiness of the goal set me up for failure.  Part of the reason my posts have been few and the time between each long is because life has been more lemons than lemonade of late.  That is not to say that there are no silver linings!  There are lots of things to be thankful for – I am full of gratitude and completely aware of the blessings in the life I lead… However, heavy clouds sometimes take a while to dissipate or can randomly scuttle across the sun in the midst of a bright day.  This year has brought a great deal of darkness and days I feel unable to reach the light no matter how brightly it shines.

Sun hidden by clouds
… clouds sometimes take a while to dissipate or can randomly scuttle across the sun in the midst of a bright day.

Although I don’t mean to resort to acting the hermit, it happens at times.  Those who know me well are aware of the health challenges I face and (hopefully) understand that any given day can bring physical challenges that make it easier to remain in one place and try to recover or conserve energy as needed.  While that is the single biggest reason I fall off the grid for days at a time, it isn’t the only challenge that prevents me from being a social butterfly, unfortunately, and lately I’m more hermit than human.  Let me first apologize for my absence – I miss you all dearly – and second, let me attempt to explain.

Chronic illness can help a person master the skill of deception – wear the mask of “I’m fine”.  Ask anyone you know that endures continual pain or physical ailment and they will probably tell you that dealing with those issues helped them, at least at some point, become more adept at “I’m fine”.  When I have to go somewhere on a less than wonderful day, I will usually try to act livelier than I really feel.  Admittedly, it is a risk… The energy necessary to pull off “I’m fine” will often significantly reduce the duration of my outing, but it keeps uncomfortable questions at bay.  The more recent weight on my shoulders and in my heart is not as easily masked, to my chagrin, and necessitates that I stay away from people in any capacity or be willing to deal with those questions firsthand.  It doesn’t allow for masks and hides from no one.  The face it wears is evident no matter how much makeup applied, how expertly crafted the smile put on, or how clever the tactical diversions I employ.  It is the face of a woman who has no children of her own.  The face of a woman who grew up in a large family, dreamed of sharing one with her husband, and wakes up every morning alone.  One who goes to bed without having kissed tiny hands and feet or listened, exhausted, for plaintive cries in the middle of the darkest night.  I am that woman, this is the reality I have come face to face with this year, and the revelation has broken something within me that I fear will never be whole again.

There is no way to tell people you can’t leave the house because you cry each day.  Heck – my family and friends know I cry about everything anyway, so it would hardly be a reason to stay home.  It’s just who I am!  It’s so much a part of me that each time I work a wedding I manage to get choked up standing behind a camera while doing my job… even though they are people I didn’t meet before that day!  lol!  More sensitive than just about any person I know, it’s not unusual for me to get teary over things that others dismiss without a second glance.  Yet, those are tears, no matter how embarrassing, that I don’t mind sharing with the public eye.  Sure, it’s not always socially acceptable, and yes – I definitely receive strange looks sometimes… but knowing the sensitivity is there, unavoidable, also lends me a certain kind of strength.  Will I cry about things no one will understand?  Yes, but it has been happening my whole life and is expected under a certain set of circumstances, so I just accept it and go on.  The recurring nature of it has built its own layer of callus as a type of self-preservation.  The crying I’ve been doing lately is different.  It’s not sensitivity crying and it’s not to share.  It’s the kind of crying that can only occur alone, where no one can hear the anguish in choking sobs that happen at the drop of a hat, while watching a diaper commercial on television or looking at someone’s family pictures on social media… Alone – where no one else has to see the ugliness of it.  And it IS ugly.  This isn’t a lovely, lone tear rolling down my cheek calling to mind comparisons to Demi Moore à la Ghost.  These kind of tears require solitude.  The type only attainable while heartbroken in my pajamas at noon I can thrash and wail and no one is uncomfortably waiting out the emotional display to hear “I’m fine”…  Because I’m not.

So please understand that I didn’t want to miss your baby shower… Please know I really did want to come see you in the hospital after you welcomed a beautiful bundle of joy to the world.  My heart is full of happiness for you and your family!!  I mean that with all sincerity!  But please know that simultaneously, my heart is breaking.  And that can, at times, prevent me from sharing these moments with you while maintaining any sort of grace or showing courtesy.  There is a hole in my life that nothing else will ever be able to fill.  Not the all-encompassing love I feel for my husband, not the joy I receive for working hard for an achievement, not material possession or adventurous experience.  Some things allow for substitution with others, but this is an exchange rate that will never balance in my favor.

In my heart I hope you understand that for each time your bladder felt ready to burst or your pants wouldn’t fit, I have placed my hand upon my tummy and tried to accept that it will never feel a baby’s kick…  For every feeding when you dragged yourself awake, I was also probably awake, lying in the black of night listening to the silence of my house.  Sure, I’ll never have to worry about childproofing and vaccines and choosing the best childcare, but I will also never feel the joy of having a small child cling to my leg and call me mommy.  Never feel soft, chubby hands pat my face with utter devotion, never kiss boo-boos or sing “ABC’s”,  never rejoice and cry and worry for a child of my own.  I will never hear a toddler’s laughter or see a teenager’s angst between these walls, and this year has been about coming to terms with that.  Sometimes I have to think, if being a parent is the hardest job in the world… being a mother without a child must rank right up there.

So, if I have seemed distant or missed an important milestone in your life, please be patient with me.  I’m working on a new face that is quite a bit more difficult than the last and I don’t have a template to go from.  Nothing I have experienced has prepared me to wear something like this and nothing in my closet seems to match… It’s transparent, you see, and makes no apologies for things that cannot be changed and hurts I cannot hide.  This mask is merely my face as I learn to live with this new view for the future.  And although I’m not fine right now, I hope some day I will be….

Hope
The mask is merely my face, and although I’m not fine right now, I hope some day I will be….