Monday, June 9, 2014

Reality Bites: TPN Grief Stage no.3 -- Anger and Bargaining

Oh, swell. I get to relive stage number three.

I must admit, when I write anything -- blog posts, short stories...Facebook updates... -- I really kind of get into the words. I think in terms of color, and write in terms of musical notes. Letters light up, scattering themselves about my canvas much too quickly for me to capture any of them before they fall. If I go back to edit, it's rarely. I never second guess what my hands have to say.

That said, I'm taking this time right now to say: I have no idea what might come out. Since I do not edit on principal and maybe even superstition, I caution that what may follow could potentially be unsettling, but nothing that is so abrasive that it could upend anyone's sense of security.

If that changes, I will be sure to edit this section right here.

U MAD BRO?  Troll Face

Stage #3a
Anger


This is known at the "troll face". Generally, if you are in a tight spot, the heart is tumbling in jagged rhythms in your chest, your breath has become ensnared in miles long wire of intermingling rage and panic and perhaps even odors of nausea wafting up from your gut -- I would think the last thing you would want to see is...well...this.

u mad bro?

I felt pretty stupefied -- to be quite frank -- the very first time it struck me that we were nearing the end of the road in terms of what any of us would have wanted for me in order to really get better. It was the start of February and had just spent New Year's eve in the ER -- again. I had just left the hospital but two freaking days ago -- and now I was back in hospital. One of my favorite patient care techs had written "Welcome Back!" on the dry erase board. My labs (which ones? I don't know and -- exhausted of the constant drama -- ceased to even care) were alarmingly low -- even some critical values where upon prior discharge they were JUST FINE. I'd gone through a 24GA IV in a sensitive spot on the edge of me palm as well as another in an equally precarious spot (edge of the forearm. We really are reaching, aren't we?) when we agreed to put in a PICC line. At that point, it really was rather relieving. I am aware of how odd that sounds considering the dangers of central lines, but it's impossible to describe the tedious action of meditating through the apologetic voices that -- under any "NORMAL" CIRCUMSTANCES I would have loved to engage with -- coached themselves over and over and over through each tenuous attempt at doing the impossible: threading a sharp straw through tough skin and scraping literal bone (adipose tissue long since gone) in an effort to score an access. Trying very, very hard not to cause discomfort but earnestly to help me so I could just go home soon. Because that is ALL I WANTED and that is all that everyone around wants for me as well. Now with a more stable path to the circulatory system, none of us need concern ourselves with lost access and multiple needle sticks...

...then along came a freeloader named Candida, who stole my heart and wrecked all that we had worked for in the name of just going home...

u mad bro?

Going through sepsis again was equivalent to being shown a troll face each and every time I wished to close my eyes and go to sleep. I was freezing and begged for blankets, but no one could oblige due to the small fact that I was already burning up with fever. Sleep eluded me, then settled in and refused to leave. It was just the most peculiar experience...I normally do not sleep for such long periods, and this brand of Fatigue just didn't fit properly. Nothing mattered anymore. Everything becomes a nasty dream here, besides the chilled bones and friendly voices. Chipper folks who I know well, asking for my effort with physical therapy (which I don't, belligerent and content in an odd solo fugue), that it's time to take vitals (I snarled each time someone said "one -oh-..." and I stopped listening), and my own want to just be warm, apparently unaware of anything more. 

I am told to be thankful for the spotty, temporary amnesia.

My memory picks up when Bob put my new PICC line in the other arm. I am then promptly taken for another CT (still too muddled to care very much as to why...) and later informed that I have multifocal pneumonia.

u mad bro? 

Then I'm home! I'm home and happy to be back. I'm home, happy to be back, nervous about home TPN, but I'm home. I intend to stay home and I do. I count the weeks, end up back in a few times, but not for very long. This last hospitalization, however, I was informed that the only stop left isn't in Missouri. It's not too far away, but still in another state. 

It's in Nebraska...and my insurance will not carry me over there.

My insurance will not carry me over there...and nobody has a solution as to what can be done. So we hit stalemate...

u mad bro?
U mad, Bro?
U MAD BRO?
BRO? BRO? UMAD...

YES!
I'M MAD!
I'M PISSED! OUTRAGED!
COMPLETELY CONFUSED
AND MET WITH ABANDONMENT ALONE.

I'M MAD BRO!
and I feel horrible that I'm so mad...

*

Stage #3b:
Bargaining

Bargaining is in attempt to escape anger by trying "to do something about it". One of the worst things to say to a person riding this twisted roller coaster of Grief is to offer them platitudes such as:

"Don't get mad, get even"

"Instead of being angry, do something about it"

"Calm down, cuz u mad, bro"

Don't get me wrong; these are perfectly acceptable words to say to someone in any other circumstance. Or even later on in the journey (because sometimes there is something that can be done to change the outcome of whatever has happened!), because while grieving is a process, it doesn't last forever. However, stage tree takes quite awhile to resolve in intensity and it's common to hit elements of anger (as counted by however many times troll face up there asked me "u mad bro?") and bargaining more than once.

I must say that there has been much anger, frustration, panic, and horror...but not much interest in bargaining. Everyone goes through stage three differently, and for me I spent a lot of time being angry. By the time the anger has dissipated I've settled just a little more into what I am currently experiencing and bargaining seems like a waste of time.

Bargaining -- if you are me -- goes a little like this:

You write several people from several organizations requesting assistance in the form of transportation, grants for the clinic bills, grants for repeating all the testing you have ever had and sometimes even more, grants should hospitalization be needed and even offer you body to science whilst still alive should transplant be the only viable solution. After everything was denied, you panic. Who wouldn't? There's a funny thing that happens to medical professionals when they have nothing left to offer you: they tell you they have nothing left in their thought tank. They look at you, and then past you. Their body language becomes foreign -- plastic. The world has become a stage for just a little bit, but you are the only one who cannot get into character. When you respond with the wrong lines (eg: you cry when you are supposed to graciously bow your head and accept their words and wait to melt down when they've gone) they go on with the performance.

They leave. 

And then they request you come back in one to three or four weeks! They have nothing to offer, and at first you are furious. Why the hell would you be reminded in as little as a few days to revisit the fact that you are -- apparently -- a hopeless cause?!

You keep going back because the show must go on. When a character exits a scene, they most certainly come back on stage until the moment that their role is truly over. If you are asked to come back, it could be to terminate care, or to offer a form of support for your own sake.

This is why I generally do not stay in the realm of bargaining for very long. In the end, you cannot control what other people say or do, and beyond a certain point neither should you insist upon it...if you do then it becomes it's own kind of pathology. Instead, this is the point where you start to get acquainted with the idea that the outcome you wanted may not be the outcome that you are going to find.

And for no one else than for yourself, if not now, it will have to be well...lest you live an empty life by no one else's hand than your own.

***

I am not a hopeless cause. My life, gratefully, is in no way over or in any immediate danger of becoming so. This has not always been the case...there have been too many times where I would be unsure if what happened next wouldn't be curtain call. Retrospect always finds me more horrified than when the threat(s) is/are present.

"What if" never helped anyone. I have never, ever met a person that resolved a conflict or were able to continue with their goals because they stopped and pondered "what if" for indefinite periods of time.

If you are interested in continuing your journey, even if it has dropped into a dark valley lacking a source of light, I can guarantee that peace can and will be found. I can guarantee that you will live out your own crazy, breath-taking, heart breaking, exhilarating adventure. This travel may be littered with sorrow, but just as surely that you can count that darkness will at times abound...the sun still comes up every morning.



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