But I am not...

Depending on who you ask (me or others), I melted down either five or six times in the hospital.  I have been thinking a lot about how difficult it was for me in there, the plans I made, and how they failed.

Primarily, I had planned to be surrounded by my helps, but the majority of those helps remained in my backpack or the closet/cabinet out of my reach.  I failed to communicate with Becky that I wanted them out and I found myself most reluctant to ask a nurse to dig for something that I wanted.  For example, I brought a framed photo of Amos to have as a focus point. It was in the prep room, but then was out of sight until I left.  That was a clear fail, because looking at it does cheer me.

I also had several scents and the electronics in a small bag so that I could have it in the bed with me. I would get it out, but it would get cleared back to the closet/cabinet.  So, I did not have much access to the scents.

About the only thing that I had for comfort was blankets.  And, well, by the end of my stay, I had enough blankets for Becky's family and her parents and pretty much all of her relatives in Pennsylvania.  Sometimes the nurses would make note of them, but usually it was just to see if I was too crowded with them.  I was not.  I even wanted more.

When I first arrived, I assumed that I would be in the hospital room and could set up all my helps for when I woke up after the surgery.  That was not the way things went.  I was first taken to a small prep room that was outside the procedure room.  Panic began to envelope me.  Honestly, the only reason that I did not become more upset than I was lay in the fact that the surgeon agreed to let me where this ... well, I don't know what it call it ... into the pacemaker implantation.  Forget the fact that he had already agreed that unclothing was fine and I had interpreted that to mean both underwear and bloomers.  I was trying to figure out a way not to be bare up top.

The day before the implantation, I was searching for a front clasp bra when I spotted these thin, stretchy bra things that had just thin straps, like the undertanks I have.  They are not meant for support or any real purpose that I could see.  The undertanks I could wear into x-ray, so I was hoping that the simple covering would be okay, even if it had to be cut off.   I was shopping because I was trying to figure out how to get covered again after the surgery. In fact, that was Becky's primary charge:  Get Myrtle in some sort of bra.  So, learning that I would be rather covered and modest going into the pacemaker implantation was such a shock it helped me to calm down, eventually the shaking stopped and the tears dried.

Of the meltdowns, the second worse was in the procedure room.  I have never been awake/conscious being wheeled into one and all the equipment was overwhelming ... as was the table with the things for the arms to be outstretched and strapped down.  I do not do well being strapped down.  I tried to tamp down my anxiety, but it got worse and worse as the four nurses were starting to apply all the pads and wires and tubes to my body. At one point, I cried out: "STOP!" and they did. I then asked if just one part of me could be uncovered at a time and the rest kept covered.  They agreed and changed the process of all the sticking of things to my body.  But when my gown was unsnapped and the back part fell off and I felt their hands on my bare skin, the shaking and weeping exploded into this ginormous storm of fear and the poor nurses were hard pressed to help.  One draped her body over my lower legs (probably to keep me from shaking my way off the table) and one was frantically trying to get me logged into the computer so that they could go ahead and give me the versed.

I know that there is a lot of negative advocacy against versed out there, but, for me, it is perfect.  I have absolutely no memory from hearing that the medicine was going into my IV until being back in the prep room.  I have just a fleeting memory of that and really was not lucid until being wheeled into the hospital room.

The worst meltdown actually started in the morning and built up throughout the day until Thursday evening.  You see, there is this process called a pacemaker interrogation.  During the interrogation, a tech takes control of the pacemaker and has it manipulate your heart rate so that the two thresholds will be breached and the efficacy of the pacemaker can be recorded.  Everyone said I wouldn't feel it. I did.

Oh, how I did.

I felt as if my heart was being squeezed and the pressure built up and up and up and it hurt.  I asked the man what he was doing.  I could feel the pacing, the electrical current, and I was stunned.  I tried to ask him to stop, to wait before doing the next threshold, the lower one, but he either did not hear me or respect what I was asking.  He actually started before he said he started because I could feel it.

That interrogation sent me into a despair that, in all honesty, I have been able to hide, but not shake.  Having someone control the machine that then controls your heart is inordinately disturbing.  I do wonder if I felt it because of dysautonomia, because of my wonky, wacky nerves.  I could not see a life of having to go through that again, could not imagine wanting to live it, to choose feeling that again.  I couldn't get an answer if I would, but mostly heard that I would likely need to do it each time my pacemaker is replaced (every 10 years).  Immediately, I seriously planned to be dead before those 10 years are up.

I shoved all the terror I was feeling over having a man force my heart to do whatever he wanted without any say in the matter as deep down as I could and actively tried to disassociate.  Only, later, I was grumpy with Becky and hurt her, I think.  My plan for the hour of her return was not what her plan was and I was lost and alone and scared ... really, really, really scared over what had happened.  But I did want her to go home to Amos and be with him and to have some time to herself.  I did want that.  I guess I wanted both.  I wanted Amos tended to and my friend given a break and I wanted her to crawl in bed with me like you see people do for folk in the hospital on television.

No one crawled into bed with me.

Then, later, the next nurse change took place and from the first exchange with her, I felt like I was going to battle and the seemingly impossible tasks of asking a nurse whom I found combative to go to the bathroom with me every hour took over any rational, sensible, reasonable bit of me I had left and kicked it out the door, down the hall, and out into the parking lot.

I had texted my counselor, obliquely, hoping she would visit, even though it was Thanksgiving.  I wanted to tell her, and not Becky, that I was losing my grip on the ability to stay safe.  But her arrival came just as the new nurse came and things were ... hard.  I tried to say what I wanted but I was too ashamed over my fear and too despairing over what happened that morning and rather ... hopeless.  I became more and more upset until my counselor left and found the charge nurse.  I bumbled and bawled my way through trying to say that I couldn't stay with the new nurse.  I wanted to be home with  Amos.  I wanted to be home where I could crawl into the corner of my closet.  I wanted to be home where no one would take me to the bathroom.

The upshot is that Parkview Medical Center is the most extraordinary place on the planet.  It just is. I cannot imagine another facility working harder to both empower survivors of abuse who had to be touched and stuck and cut and such and to make them feel safe.  I was truly scared, having already been fired by a doctor in the past month, that news of my colossal meltdown would cause the cardiologist to do the same.  Plus, this is the hospital in my network, so I will have to be there any time I need medical help.  I had visions of being blackballed for saying I couldn't have that night nurse.

I did not eat much in the hospital, but after the nursing switch, before Becky left for the night, I finally ordered some food.  I laughed with Becky and played a game (I think) and managed not to beg her to stay when it was time to leave.  But I kept cycling through moving away from my fear and then falling back into it, trembling from head to toe for the rest of the night ... or at least until about 4:00 AM.

I think I did a good job of containing it until Becky left, but afterwards, being rather ill from stool pressing on my vagus nerve, I failed to do so.  And thus the cycling.  Now that I am home, and Becky is gone, the cycling has continued.  Being overwhelmed with abject fear and despair and forcing myself to pretend that all is well.  That I feel the pacing at my upper threshold and feel the daily pacemaker self assessment is making all of this more difficult.

The nurse who was switched to my care was very young and very new, but she treated me just like I needed.  She got down low so her face was at the same level of mine, like you would with a child, and repeated that it was perfectly okay to have asked for the change.  She said it was smart of me to recognize and ask for what I needed.  She also spent time during the night hours, when I was awake, teaching me more about my heart.  And she repeated what I needed to hear many, many, many times as if the repetition was just part of the protocol of my care and not something unusual ... or childish.  It was her promise to watch over me, if I put on the headphones and slept, that helped me do so.  Each time I woke, she came in immediately to let me know that I was still safe.

One of the times I woke, I did not know where I was.  I cried out and she told me, very matter of factly, that I had had a pacemaker, that I was at Parkview, and that I would be going home to Amos soon.  She did not make me feel childish for my fear.  She just calmed me.  I wish she were hear now.

I want to be the person who no longer feels the hands on the bare skin of my back.
But I am not.

I want to be the person who does not associate my hear being forced into a rhythm with an attack.
But I am not.

I want to be the person who is not filled with suffocating shame when her weaknesses are on display for all to see.
But I am not.

I will admit that it is rather difficult to stuff yourself in a closet if you have just had surgery and are limited in the use of one arm.  And it is rather difficult to stuff such shame and terror deep inside and pretend that all is well.  A migraine is starting ... well, started a while ago.  I have been holding off taking my medication so that I could write ... so that I could try to capture some of what happened so that, maybe, one day, I could reframe it to something less ... harmful ... to me, less of a failure, less of a disgrace.