Tag Archives: medical

PTSD. Again.

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In mid November 2013, I stopped writing in this blog. I had another traumatizing experience during a medical procedure and was unable to function normally let alone write anything that touched upon emotions. Coming back to this blog was prompted by a need to learn how to use WordPress on my iPad for the Braille Institute class. Then Braille Institute decided to establish a name badge policy and outrage worked as an awesome motivator.

Now it is time to write about what happened. As you read my recollections, please keep in mind that trauma is often stored in our brains not as narrative memory but as snapshots leading to disjointed recall.

I woke up from a trachea stretch with a tube keeping me from speaking and unable to move properly. There was a lot of chaos around me with people saying thins like, “Jen, squeeze my hand.” Nobody said things like, “Jen, I’m <insert name> and I’m going to do this.” Nobody appeared to be focused on keeping me informed of events or trying to establish a line of communication.

The tube came out quickly. The inability to move properly resolved itself. The damage was already done in the moment when I came to consciousness and couldn’t move, speak or understand what was happening, isolated in a scene of chaos. More trauma came as I learned that the situation might have been avoidable if better choices had been made by some of the clinicians involved.

Upon arriving home, I knew I would have some sort of reaction to my experience, but I wasn’t quite sure what. It took about twenty-four hours before the first signs became obvious. I walked across my kitchen and set the toaster oven tray in the sink. Then I crumpled to the ground in a ball and sobbed. There was literally absolutely no immediate cause for the tears. They just happened.

The uncontrollable sobbing became my life with tears unpredictably surfacing one to three times a day. I could be reading a book or chatting on the phone or sitting in a meeting and tears happened sort of like a sneeze – there are things you know will cause it, ways to possibly delay it, but sooner or later, it bursts forth.

Eventually I learned those delaying tactics, making being out in public somewhat more possible. Sometimes I was even able to identify what caused the tears and what emotions I was feeling. Once in a while it was even related to immediate events and not past trauma.

There is something unique about re-traumatization – having experienced trauma, developed PTSD and been successfully treated only to endure a situation similar enough to be the equivalent. then you are coping with PTSD from the recent trauma along with PTSD from your history of similar trauma. In some ways it is like light reflected between a multitude of mirrors so that the intensity of light is greater than any component part. It’s wildly exponential math. It’s emotion magnified, refracted, blenderized and placed in a pressure cooker with a faulty valve.

My entire life ground to a screeching halt. I gave up any notion of doing anything more than going to therapy, walking the dog and making sure we both ate and slept. I did things requiring use of my hands – sewing, baking, knitting – to fill my mind with something because it left less space for trauma. I didn’t visit my family for the holidays. I only talked to people who didn’t make me more upset. I kept asking for topics of conversation to be dropped before I lost it. Again.

Time passed and I was able to control enough of what was happening to begin tentatively living. Then, I knew another trachea stretch was on the immediate horizon because that’s how my stenosis works.

Part of my PTSD symptomology is that I cave in front of anyone I see as an authority figure or more of an expert in a field. Talking to doctors was harder than… crossing an eight-lane highway without a cane, dog or even audible traffic signals. I did it badly. I somehow got through it.

This time, the procedure went smoothly. With a positive experience the most recent in my memory, my life has settled down. I have been able to resume my regularly scheduled existence, just with way more therapy and a conscious commitment to real down time.

Here’s the interesting part. I’m being put back together in better shape than I was before November 15, 2013. I’m not doing it consciously, but I see things happening inside myself that I know will lead to a stronger me. I’m still having trouble wrapping my head around that.

 

The Ring Theory

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A while back, I came across a piece by Susan Silk and Barry Goldman that talks about how to behave in relation to another’s trauma. 

http://touch.latimes.com/#section/-1/article/p2p-75241622/

 

Think about personal trauma like this: You drop a rock into a lake and that stone is the ordeal landing on the head of the person experiencing it.  The ripples move outward, water closer to the impact point rippling more significantly than water a foot away. 

 

Now apply this to personal trauma.  The closer to ground zero, the more a person is affected by the trauma.  A significant other would be close to the center whereas a next door neighbor would be further away.  In this way, you can gauge the degree to which any given situation is impacting others and place yourself within that structure. 

 

The rule is to not complain or otherwise vent your feelings about the situation on anyone closer to the trauma than you.  Instead, dump your feelings about the situation on someone even less affected than you.  To those closer to the center, give love and comfort and support. 

 

And the person in the center whose trauma it is? They get to do and say and feel and be whatever they want.  That is the benefit of being at Ground zero – nobody complains to you, gives advice, judges your behavior or otherwise sends negativity inward toward you. 

 

Obviously there are limits to this, like how long the person experiencing trauma is at the focal point.  Life moves on, people adjust and eventually things shift.  If your beloved cat dies of old age, you probably aren’t at the center of things as long as you might be if your beloved cat was hit by a car at age five.  Degree of trauma matters in terms of duration of the complain/support rule. 

 

Having been at Ground zero more than once in the past few years, I can say with absolute certainty that people who respond to me with negativity or their own fears and reactions to my situation are not helpful.  In fact, it often causes me to shut down and relegate that individual to a more distant sphere of my life.  Make me cope with your feelings about my predicament? Go away.  Decide you know better about my situation than me? It’s time for a friendship vacation.

 

Silk and Goldman do not touch upon one aspect of the situational dynamics.  When those you would count on for support instead offer negativity and judgment, you are in a complicated place involving rocks and hard things.  If you push the person away, then you lose any hope of gaining support in the future.  If you tolerate the suboptimal behavior, then you open yourself to more of the same.  At a time when what you need is propping up with love and comfort, you are not only getting something far less helpful, but you must also figure out how to handle it.  Coping resources already stretched to the breaking point by the trauma have to now also withstand interpersonal drama. 

 

Ground zero needs to be about the trauma not drama.  Offer love, support, foot rubs and pot roast.  Refrain from offering up yet more for the person with the trauma to handle.  Make it your unspoken gift to them.

 

Ears

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I welcomed the new year in with double ear infections – both sides, inner and outer. First, in defense of infants the world over, I have only felt that intensity of pain once before when my appendix was about to rupture. The ear pain had me curled in a ball on my living room rug at 2:00am begging the universe to make it stop. Sobbing. Loudly. Babies, in my opinion, should scream louder.

Along with the pain, I lost significant amounts of my ability to hear. I could hear someone on the other end of the phone, but not someone standing next to me. I stopped being able to perceive the noise of my fridge for about three weeks. I was unable to walk in a straight line inside my own home. I couldn’t hear if the pot of water on the stove was boiling or not.

As you might imagine, this was a life complication. Once the pain was under control, it took about 48 hours for my brain to say, “Hey, we can navigate the outside world. Camille’s good at her job. You should be able to hear audible crosswalks. AS long as you only go to places you know…..” Around then, I stood up and the room started spinning. “Okay, maybe not if I’m experiencing vertigo.”

Once the dizziness passed, that’s exactly what I did – went out and navigated familiar places while my hearing was limited. I’m still stunned at myself. Not amazed. Stunned.

What attitude or approach achieved this … result? This is a new adventure. Wonder what it will be like. Wonder what I’ll learn.

I credit this mindset to my December reading of Crashing Through written by Robert Kurson telling the real life story of Mike May’s adventures in going from totally to legally blind. Perfectly content as a blind man, he was presented with the unexpected possibility of regaining vision with a new medical procedure. The book chronicles his decision and subsequent experiences.

To boil it all down, he did it to – excuse the pun – see what it would be like. I was presented with a perceptual change and decided to embrace it as an experience. It went well.

two months later, I have most of my hearing back, but they aren’t sure everything will return. The nuanced auditory input I use for things like “Where did that thing land when I dropped it?” is effected along with trouble discerning traffic patterns, identifying the location of an open doorway and a few other things.

I’m pretty much done sucking all the learning and experiencing out of this adventure. Fingers crossed that the steroids work.

When There Are Words

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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

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From Charles Dickens we move on to something reminiscent of Stephen King. After the events in , 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.

A Tale of Two Extremes

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It was the best of times. It was the worst of times. Or, well, at least a striking dichotomization of the medical profession.

In September 2011 to deal with the ongoing saga of my tracheal stenosis is, I had minor surgery. A procedure with which I am familiar, I still somehow experienced a vast amount of related stress. In fact, a surprising resurgence of my PTSD caused me to rethink a prior conclusion that it’s under control. Then we had a power outage that pushed the procedure date back five days, so by the time the event arrived, I was a bit overwhelmed.

The first speed bump in the day came when I was told the gastroenterology folks concluded they needed to do a procedure on a different day to assess how my stomach might be contributing to my stenosis, potentially requiring some sedation. Overwhelmed as I was, life became entirely black and white where probably meant would and since anything between fully alert and fully knocked out is terrifying for me, the thought of the whole thing unglued me.

There are some things you might not consider unless you’ve been a blind person in multiple medical situations. Typically, medical professionals do not know how to keep you informed of events around you. Extreme amounts of focus to track events from the data you can gather help, but any kind of sedation destroys essential concentration and memory leaving you wondering what’s happening as you fade in and out. In case it’s not obvious, that kind of disorientation plays badly with PTSD and is why I either have no drugs or get totally knocked out. You also cannot be certain of privacy, who has entered your designated space, or where your nurse went. Therefore, when I was told about the GI decision, I couldn’t curl up into a Miserable Ball of Jen. With hindsight, I know that was for the best, but at the time I didn’t have such clarity.

Then the pendulum swung to the opposite apex of it’s arc as I went into the O.R. Unlike other times, I ditched stoicism and made my mental state clear. Everyone, and the room was populated with people I knew, was great. They did two things exactly right: casually kept me aware of what they were doing and engaged in distracting conversation. It was fine. I was fine. Never thought I’d experience that.

Waking in recovery, I needed oxygen. Without a nasal airway, a mask is the only option. It’s also the most upsetting medical thing I can imagine. But, wait, the Anesthesiology Nurse had a flash of brilliance when she cut a whole in a Styrofoam cup and I used that like a funnel to direct the oxygen at my face. Personally, I’m nominating her for sainthood.

Soon, though, I was smacked down to earth as I listened to the plight of my neighbor. As he came to consciousness, a breathing treatment was being administered. Unable to clearly speak, he still had questions. As someone who wakes up with a few of her own, I could empathize with his situation. I guess Recovery Nurse couldn’t because she politely then not so politely ordered him not to speak. There was no effort made to communicate in another way — no pen and paper offered, no yes and no questions asked, and no reassuring words to explain how his surgery went. Nothing.

From experience, I know how to gesture for pen and paper. I also (thankfully) can write without looking. In his shoes, I could have gotten what I needed to feel safe. Most people do not have my vast experience or coherence upon regaining consciousness. In this man’s Johnny, I would have been utterly petrified.

I’m starting to wonder if my experiences with the institution of medicine as a blind person is simply the result of a continuation of cluelessness. It’s not so much that they know what to do with non-disabled folks, but fall short when it comes to blind people. They just don’t know what to do with anyone.

The notable exception Is obviously the Pulmonology folks and Anesthesia Saint who apparently were given empathy and clue shots along with their new employee orientation.

McSteamier Does Appearance

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Grey’s Anatomy has replaced McSteamy with Mc (in my opinion) Steamier and thus one plastic surgeon exits and another moves to the forefront offering me more appearance-based storylines to critique. Aren’t you just jumping for joy?

On “The End is the Beginning is the End” (Season 9, Episode 11), James, a sixteen-year-old teenager, comes for his sixth surgery to address what he refers to as his “weird” appearance. Everyone around James cringes to various degrees about the weird label further substantiating the point I made in. Those of us with the weird face can accept it and the social consequences with far more equanimity than those around us. Why is that? And that’s not a rhetorical question.

When The Hot Girlfriend visits James, McSteamier seems perplexed and James offers an explanation that goes something like this: McSteamy told me surgery was going to get me only so far so I had to develop some moves to get anywhere with women. He said his moves wouldn’t work for me, so I had to come up with my own. I blind them with my personality. This brief explanation took me to the heights of elation only to drop me to the depths of infuriated resignation.

My personal experience of plastic surgeons is that they bank on all the negative consequences of having a weird appearance in our society – isolation, rejection, scaring children, lacking dates, getting treated like you’re contagious and… Then they offer you the infallible remedy – described in as little detail as possible — to vanquish the horrifying fate. It’s an approach of extremes selling you on the described course of action better than any ad campaign could achieve because no convincing is necessary that looking weird has lousy consequences and we’ve been taught to believe Medical Gods have all the answers. After all, they became doctors to “do good” and no self-interest or ego is involved in their proclamations. They only want what is best for us and are going to deliver it.

At no time in my life has anyone let alone a doctor said, “Surgery will only get you so far.” I’m actually a little terrified to even contemplate how that might have altered events. Would my parents have been so persuaded and determined that I needed to be fixed? Would I have been such a willing sheep? Would such an honest perspective coupled with identical experiences somehow left me with less emotional scars?

Of course Grey’s Anatomy’s writers then made me furious by implying the right behavior (moves) could overcome a weird appearance. Really? I’d love to attend the workshop that taught me that particular set of skills.

Replacement of my biological eyes with prosthetics altered my appearance in a manner socially perceived as an improvement. Since then, I have noticed significant behavioral changes in those around me. Strangers engage in innocent flirting. Children’s questions have morphed from “Mommy, what’s wrong with her?” to “Mommy, why is she using that stick?” Dates haven’t suddenly begun raining from the heavens, but stranger discomfort has drastically decreased. However, while under anesthesia, I did not receive an infusion of improved social skills nor a transplant of dazzling moves. To me, this experience argues that how I look has more power to impact others than anything I say or do. I looked weird. I look a little less weird. People behave accordingly.

In the end, Grey’s Anatomy may have mitigated the impact of it’s “If you have the right moves” perspective. With all his blinding personality, James still said, “Looking less weird would be cool.”

With Water, Rudder and Pilot

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It’s strange how sometimes it literally feels like a switch is flipped inside your head and everything changes. You were just passively sitting there, taking in the world, when between one breath and the next it’s all different.

This happened a couple of days after I wrote

The factor changing everything was A PLAN. Funny how that makes it all easier on someone like me.

Actually, I’ve come to realize it’s not all that astonishing that plans make someone like me feel better. A large part of my life has been without parameters – I don’t know how much energy I will have each day, I don’t know what barriers to access I will encounter, and I don’t know what my body will do next. Most people have at least the illusion that these things will remain more or less constant. I think maybe that’s one of the often unacknowledged differences between non-disabled and disabled people – the illusion of constancy versus the hard reality of the unknown.

Non-disabled people have come to count on a world that works in certain ways because by in large it has done so in the past. They wake up with about the same amount of energy and they can accomplish things without crazy obstacles being thrown in their paths. I refer to it as an illusion because people get the flu, cars get flat tires, people get laid off, bones get broken, houses flood, stores run out of diapers, and total chaos is entirely possible. It’s just not likely and people tend to count upon that and learn to cope when it’s not the case.

I cannot move through the world playing the odds that it will be smooth sailing because it’s so often not. I’m more likely to have wrenches thrown in the works and need to be prepared to handle such eventualities. My reality is unpredictability and my best coping strategy is preparedness.

I guess it’s the difference between walking on a tight rope knowing a net will catch you versus walking on it not knowing if there is a net. Nothing in your skill level changes, but the difference is huge.

My doctor laid out the steps for sorting everything out. Nothing is even infinitesimally more certain, but knowing the part somehow makes it easier.

I’ve been accused of being a control freak. and, to some extent, wanting to be in control is a feature of my personality. However, how much lack of control do I live with on average? Wouldn’t that tend to make me want to be able to control what I can? To assign random numbers to the situation, I have maybe 30% ability to predict events in my life. A non-disabled person might have more like 55% ability to foresee the future. So, wouldn’t I be prone to trying to make my number closer to that of a non-disabled person? Am I a control freak or just a person wanting the security of knowing whether or not there’s a safety net?