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.
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.