When There Are Words

It's odd how having words to describe a situation changes how you relate to it. The mess going on inside of me hasn't actually morphed into something that is comprehensible. Having words, especially ones I can share with others, feels like the same mess is encompassed by some sort of boundary in which it resides without spilling over. I've already used many, many words to describe the portion of the mess associated with my feelings of isolation and lack of human connection. I now have a way to describe the other portion related to my Post Traumatic Stress Disorder (PTSD) and described in recent entries. I experienced childhood medical trauma that led to adult onset of PTSD. With therapy, I was able to manage the symptoms and make inroads into recovery. For me surgery of any kind bares enough similarity to my original traumatizing experiences that my brain tended to react as if it was trauma. Over a two and a half year period, I underwent seven surgical procedures and with each the PTSD symptoms were less – a net gain in PTSD recovery. Then, I was traumatized by events surrounding a surgical procedure. At the time, I did not respond significantly to the trauma aspect, instead suppressing much of the emotional response. With yet another surgical procedure on the immediate horizon, there has been a resurgence in PTSD symptoms including nightmares and triggering of flashbacks and body memories. Words. All neat and clean. I'm slightly worried that my ability to convey them in a calm manner is in fact me further suppressing my emotions and that what feels like containment is in actuality minimization of the real trauma I experienced. Guess we will find out.

Misery, Desperation and Nightmares & Dreamscapes

From Charles Dickens we move on to something reminiscent of Stephen King. After the events in A Tale of Two Extremes, I had two doses of anesthesia and from a PTSD perspective, everything went well. In fact, by the third procedure in October 2012, I was starting to feel like it was a routine event. Totally and dramatically wrong. A failure of imagination as well as not attending to multiple warning signs are the only explanations I have as to why I was .... blindsided.. First, there was the orderly who thought I could see and was surprised I was sighted. Then there was the O.R. nurse similarly uninformed and also not aware of my lack of a nasal airway. There was then a floating nurse who thought I could see. Three in a row should have raised my suspicions, but I explained it away as a lack of charts being read with any care at all. Next there was the anesthesiologist who I'd encountered before. He wasn't my favorite, but nobody can live up to AnesthesiaSaint mentioned in the previous entry. However, when he asked what music I'd like to hear, I told him and he IGNORED ME, I should have paid better attention. When he continued to disregard most of my requests for how I wanted him to interact with me, there should have been red flags doing the cha cha in my head. Not knowing I'm blind is one thing. Totally ignoring what I want is another case altogether. I came out of anesthesia and was told, "We are moving you to your bed now." They didn't give me a direction, which is typical for people who don't know how to behave around a blind patient. I went to ask, "Which way?" and discovered I couldn't talk well. There were sounds I was unable to make. I tried asking the question in other ways, but was more or less ignored. So I tried all the nonverbal communication skills I know, including trying to fingerspell, which is when I realized my right arm was fairly numb and unresponsive. I started getting pretty agitated. Nobody really did much to sort it out. I was the man having the breathing treatment who was shot down when he tried to get the reassurance he needed. My brash proclamations that I had the skills to handle such a eventuality crumbled in the face of medical staff unable to notice that I was communicating. Finally, I managed to get across a need for pen and paper because I found ways to express the concepts using sounds I could utter. I demanded my doctor. It took extreme insistence to get him. My awesome, amazing TracheaDoc was not prepared for the situation and handled it suboptimally. He had no idea I had just experienced enough trauma to take my PTSD from "mostly managed" to "completely out of control." That's because doctors aren't educated on such things. Unfortunately, in this one way, he turned out to be like other doctors. Guess he's not superhuman. He did share one crucial fact – the paralytics used in surgery hadn't worn off and my vocal cords were effected. Also, the blood pressure cuff had cut off my circulation. I pretty much cursed him out saying he'd better be right or else with a few tears managing to escape. You know what? I'm extremely proud of myself for not losing it more than I did. The circumstances of this situation could not have been better for triggering my PTSD if I'd picked them myself and went beyond anything in my most vivid nightmares. If the events had been described an my opinion as to my probable reaction sought, I'd have predicted screaming, yelling, throwing things and behavior likely to get you sedated and put into a padded room. Instead, I had a fairly understandable response. Or, well, to me understandable. I don't think the sighted medical staff had that perspective. I'm concerned about what my medical chart now says. I'm looking at surgery in the next month and the thought is... not pleasant. People Aren't Broken is our new home!

Will We Learn?

When Vietnam vets began to get sick and babies were born with unexpected birth defects, nobody believed it was Agent Orange. Even today, Veterans Affairs does not acknowledge all the conditions caused by exposure to the chemical.

To put a personal face on it, the most commonly accepted theory of why I turned out the way I did has to do with my Dad’s exposure to Agent Orange. Midline facial birth defects became far more common in Vietnam’s children. I don’t have statistics for this, but I believe the incidents were also higher in vet’s children. I had a midline facial birth defect, yet the VA has never acknowledged my father’s service to his country might have resulted in my disabilities.

Then we have the first Gulf War where service members began experiencing weird medical conditions after service. They are still fighting for their conditions, such as ALS, to be recognized as service-related.

9/11 happened and many of those who ran toward the disaster to help began developing medical issues in the days, months, and years after. They still struggle to get help.

Now vets are coming home with PTSD and they are not getting the help they need.

As a people, are we really that dumb? As a people, do we want this to be how those who help and defend us are treated when they need our help and support?

You are probably thinking, “Yes, our government needs to do better. I’m ashamed.” While I acknowledge that our government ultimately must take responsibility for those harmed in the line of duty, I think it is easy to see this as something beyond one person’s ability to impact.

You may not be able to offer health care, you may not be able to beat the VA into submission, and you might not be able to change the world, but you can still do something. We’ve all heard the horror stories such as like this one and wile we feel for the people involved, we don’t really do much.

I know the brother of the soldier described in that blog and I think the fact that I keep asking how his brother is doing matters. I think the fact that I tell his brother’s story matters. I can’t do anything to fix the broken system, but I can at least make sure those impacted know people care and the stories are spread until someone who can help hears them.