“What Nightmares Are Made Of”

Monday, February 16, 2015 @ 3:28 AM

“What Nightmares Are Made Of”

I woke with a start and a sick sense of dread.  I immediately flipped over and reached out for my husband, who despite my nightmare induced gut-wrenching fear, was, to my great relief, sleeping peacefully beside me.  I immediately began to sob.  Thank god!  I had just spent agonizing time in my dreams realizing that I had lost him and that I was not only unable to contact him, but that I didn’t know how to contact him.  In my half-conscious stupor and the realization that it was only a terrible nightmare ,I lunged for him and in the dark and demanded, “I need you!” through a torrent of tears.  His immediate embrace was an instant comfort and his soft cooing, “It was only a dream;  It isn’t real” soothed my immediate sense of loss, but seemed to make the potential for loss and the realization of how scary this nightmare was all that much more potent. 

This disease and every aspect of it are, no doubt, a nightmare.  But the true nightmare that haunts my consciousness is the thought of losing all that I hold most precious and dear to me.   We’ve been through this once.  That was more than enough for many, many lifetimes.   But, in fact, we are facing it again.  And this time around, so much of it is pure hellish nightmare. 

A re-occurrence.  This is the most certainly the things that I nightmares are made of.  I am devastated on many levels.  It seems harder for me this time around.  I feel weaker and more ill-prepared.  I feel less like myself and more like a ghoul than I remember. 

Today was a particularly bad day that wrapped up a particularly bad week.  I’ve had 2 days, (Wednesday and today) that all I could do was sleep.  My body just couldn’t.  Couldn’t what?  Couldn’t anything!  It is difficult to put into words how it feels and what I am going through.  I tend to say, “I just feel awful” or “I don’t feel good, or something along those lines regularly.  Oddly enough writing them now, I can’t help but laugh because I realize how ridiculously inappropriate those words are.  They down play the enormity of my pain and anguish to an extent that almost seems comical.  It is so much more that not feeling good.  It is pain – in intense levels – felt in intense ways all over my body.  It is exhaustion - both physically and emotionally - that is so far beyond “tired” that it is difficult to quantify.  It is worry – so acute and intense - that it causes me physical pain.  And …so, so much more. 

Surviving the Cushing’s Disease itself – the physical part – well, that is the least of my worries.  I can endure pain.  Of that I have no doubt.  I’ve been coping with pain on a daily basis for a long time.  The part that scare me, the part that my nightmares are made of is the very real and what seems like very probable potential for losing myself…and even more devastating, the and people I can’t imagine my life without. 

Recently, I was feeling very misunderstood and I point blank asked my husband if he had read any of my blog.   I felt that he was disconnected from me and my battle and I wanted him to “get it.”  I thought, knowing how therapeutic and cathartic that writing is for me, it could help him understand more of what I’m going through.  I envisioned him reading through the posts I have spent time crafting so as to best detail what I was going through.  In my romanticized vision of him pouring over my every written word, he would laugh at the ironic humor of some things, empathize with my plight in other moments and even cry as he grasped some of the things that I face.  I could see that it would only enhance a very intimate connection between us.  It would solidify our journey together as my written words might be small missing puzzle pieces that would give him insights into me and my battle. 

It didn’t work out quite like I envisioned. 

Turns out, it actually did the opposite.  He was hurt by the things that I shared.  He felt attacked and even humiliated to some extent.  He was angry with me and I was so taken aback by his response that I too lashed out in anger.  I felt as though he was denying me my truth.  I felt as though he was making it about him instead of realizing that it was about me and what I was/am going through.  I was hurt that he was, or so it seemed to me, belittling my experience, my thoughts, my battle, and therefore who I was/am.  That last one was the most potent.  I felt like he was invalidating me and that hurt! 

Here’s what I mean by that.  A large part of this disease for me is the deterioration of my self-esteem and a constant hacking at my self-worth.  From the devastating physical changes to the ever feared mental and psyche alterations.  For him to be angry about my expressions solidified so many of the feelings that torture me.    It hacked into a very sensitive place and then viciously ate away at something that I still have trouble identifying.  But it hurt and I was pissed that he was hurting me in a way I didn’t know I could be hurt.  I foolishly thought I was familiar with all my weak spots and had them guarded by an army of efficient self-talkers that prevented anyone from invading my soft spots.  Like I said, that’s all good and well until the attack hits an area that you didn’t even know needed protected.  I was wide open and vulnerable to a devastating emotional slaughter.  AGAIN.  Damn it! 

Let me be clear, as I know now that I haven’t been in the past…I am most certainly not…NOT!  NOT! NOT! attempting in any way to make my husband out to be the villain here.  He has been and is today, the hero in this story.  I don’t know how he does it.  I am not claiming perfection or knight in shining amour, because it is hard….really hard…but I am insisting that he is my rock.  His journey through this is really different.  I’ve failed to really take into account what he does through.  At the bare minimum, in total honesty, I know that I am ridiculously difficult.  This damn disease causes so much chemical imbalance that I loathe myself many times, so I can’t begin to imagine the nightmare that he endures.  I am not so juvenile so as to not realize that this is the very reason for many of the issues that arise.  I feel that I’ve lost so much of myself…and of course, he too feels as though he has lost me in many ways.  I mean…trust me I think about it…I can’t what he sees when he is facing me and something spiteful and mean that I’ve said or done, wondering if the ogre (me) in front of him is the real me, or a result of this damn disease.  And worse yet, is this hell that he faces, it is permanent.  Will he ever know the woman that he married again?  Will this temperament be the norm?  And most painful of all for me is wondering how many times and how often he says or think to himself, “I don’t think I can do this anymore!” ….and who could blame him.

THIS is what my nightmares are made of.  The realization that I don’t know, if the tables were reversed and I was trying to endure the same things that I am putting him though, I don’t know if I could do it.  I don’t know if I would have the fortitude to be that strong and take the kind of abuse that he endures because of me.  I carry so much guilt for what I put him through.  I carry so much guilt for what he is denied and has to endure as a result of having the misfortune of me stumbling across his path.   I used to say that I believed that we were “meant to be”…but now, I can’t say that without feeling a terrible sense of dread for him.  How must he feel if I say that?  Is the pain that I cause him all he can think about?  When he hears that, does he take it to that mean that I think he was “meant to be” miserable?  Does he love me enough, (and I couldn’t hold it against him if he doubted it) to conquer all that this ugly disease throws our way?  Or, will be leave?    

Nightmares, I tell you….NIGHTMARES!