PTSD. Again.

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.

 

Blinded By Jealousy

Even when I was partially sighted, I never used the term “visually impaired” to describe myself because it was too avoid-the-reality-by-using-a-warm-and-fuzzy-word for my tastes. Instead, I simply used blind.

Life has recently caused me to re-examine my feelings about this. A friend who is partially sighted and I shop at the same grocery store. We’ve noticed that employees who have worked with one of us first then assume the other one is exactly the same in terms of abilities and needs. The initial blind individual a TAB meets seemingly becomes their working definition of what it means to be blind, shaping assumptions that inform their expectations, perception of needs and predictions of ability. When the same word is used to describe markedly different individual circumstances, TABs cannot manage to grasp the difference.

These TAB behaviors shaped by the assumptions formed from observation of two people self-described as blind but with differing vision are at the core of the tension between those who are totally blind and people with usable vision. The totally blind are annoyed with those partially sighted for creating unachievable expectations in the minds of TABs. Those with usable vision are irritated when totally blind individuals describe themselves as visually impaired for the lower expectations engendered in TAB minds.

Guess what the common thread is here? Expectations of TABs. Aren’t they the ones to hold responsible for their tendency to assume one blind person is representative of all blind people? Yet, within the blindness community, much energy is expended arguing about blind versus partially sighted instead of viewing TAB attitudes and actions as the source of the friction.

Unfortunately, all that neat and clean logic hasn’t helped me. Spending time with people who can see some and identify themselves as blind, I have increasingly become frustrated. Their usable sight puts tools in their toolbox I do not have in my own. With these tools, they are able to do things not possible for me. For example, follow another person without needing verbal cues, identify landmarks even if they are just a blob and perceive grass from dirt by color. While they may seem small, they add up to something meaningful.

There is a flavor of privilege in those who are partially blind that irritates me. By using the same term, the benefits of usable sight are dismissed as unimportant. Think about it. I can’t make eye contact and that has major social disadvantages. Someone partially blind may be able to simulate or achieve eye contact and reap social benefits. How is that not privilege?

I’m really struggling with all this. I think using the word “blind” to label yourself is completely understandable and reasonable regardless of the amount of usable vision one might possess. I just equally find it frustrating that the privilege bestowed upon those with some vision goes unacknowledged by them. I want such individuals to call themselves whatever they want, understand they have privilege kind of like African Americans who can pass as white have privilege and not pretend we are exactly the same. Privilege is about socially sanctioned benefits based on social perception of the individual. If I could pass as a white, able bodied, heterosexual man, then even if I were a black, disabled, female lesbian, I would still receive privilege. How unfair would it be to pretend otherwise?

What He Said

I could not have put this better myself if I tried for a week.

http://www.planet-of-the-blind.com/2014/03/the-able-bodied-blues.html

Nothing About Me Without Knowing Me

There’s a phrase – “Nothing about me without me” – that is used frequently in the disability rights movement. It is a means to combat the tendency in the “helping” professions to proclaim what is “best” for a person with a disability, while those making the choices are not disabled and have not found out the wishes of the disabled person. In other words, any decision about a person with a disability should, um, involve that person. It might seem very basic, but you would be surprised.

Parents of an adult with Down’s Syndrome speak with social service types about their child’s future, setting up such arrangements as what group home that adult will live in. Nobody asks the adult if they want to live with only members of the same gender or what neighborhood they might prefer. Legislators are writing new laws about how at-home assistance will work for people with disabilities, but there is not one disabled person involved in the process. My local public transit authority is making some drastic changes to routes, and while people with disabilities will be impacted by the alterations, they haven’t as of yet actually sought or even been open to the input of blind people.

The good news is that “Nothing about me without me” has made a lot of progress over the years.

With all this in mind, I was thinking about how people make judgments about me and my life without actually knowing me. They see blind person and think things like “Her life must be hard,” “She must not be able to enjoy TV,” or “She can’t possibly do X.” This, as you all know, drives me nuts.

When, through another’s words or actions, I encounter this directly, I can address the misconception the person has created. It would be even better if I could derail the process before it comes to that point.

Can the phrase “Nothing about me without knowing me” become popular? I want to know if just hearing that phrase makes sense to people.

Eye Contact

You walk into a coffee shop planning to be a total hermit behind your book while you enjoy a beverage. You see a blind friend hanging out with someone else. In such circumstances with a sighted person, you would probably make eye contact, smile and move on. However, that’s not possible in this situation. What do you do?

I can tell you what to NOT do under any circumstances. Say nothing at the time and then later tell the blind person you saw them. It’s creepy. And somehow demeaning. Oh, yeah, and it seemingly feels worse when you are female.

The better move is this: Walk past the table – not over, but past – and say, “Hey, it’s <name>. I’m just passing through.” Done. The reason, by the way, for the “walking past” part is that it provides the element of casual eye contact as opposed to a desire to engage in extensive social interaction.

People seem hesitant to offer a verbal greeting for fear that they will get sucked into a conversation. While that risk does exist along with the possibility of awkwardness, those should not be obstacles to doing the right thing. By approach, you can minimize the risk.

And, did I mention, it is otherwise creepy and somehow demeaning?

I Quit

I’ve decided to stop being bisexual. I am neither relinquishing my attraction to more than one gender nor am I going to cease mentioning that I am bi when it is relevant. I’m merely done trying to be a member of the bisexual community.

The reason is simple: I won’t be the kind of disabled person necessary for inclusion. I am no longer willing to follow these rules:

A. Do not talk about my disability.

B. Do not discuss my disability-related needs.

C. Smile and be grateful for any bit of attention “lavished” upon me.

D. Embrace or tolerate the “Let me help you, poor thing” attitude that comes with any aid.

E. Allocate my disability-related needs to the realm of wants subject to the “whims” of people’s “kind” hearts.

F. Let prejudice behavior and policies exist without naming them as such.

So, today as the bisexual community comes together to celebrate and raise its visibility, I am taking a giant step away from that community until I can be both disabled and bisexual at the same time.

I have not made this decision lightly or in haste for it is only after years of working as a leader in my local bisexual community that I have come to this crossroad. The last three months, as I’ve taken time from that leadership to focus on health issues, I have watched as any acknowledgment of disability vanishes from the activities of the local bisexual community

Then, too, there is the behavior of the bisexual community on the larger national scene. My comments on accessible practices have been snubbed. Requests that people think about accessible formats are not acted upon. Disability might as well be a planet in another galaxy given the amount of attention it receives.

Finally, there are the individuals that compose the bisexual community. I am the eight-year-old child at an all grownup party that never conceived of a child being present. While this is not substantively different from how I am treated in heterosexual social situations, I would have expected more from a collection of people who routinely experience social isolation and discrimination.

Today, more than nineteen years since I left my closet, I am not exactly returning to that enclosed space. I’m leaving the bisexual building and only going back for brief visits when my bi friends invite me. Maybe the whole “Be polite to guests” principle will apply.

[If you are left thinking, “Wow, she’s angry,” then go read the previous entry for my perspective on anger.]

Beyond Anger’s Reputation

Anger has a bad reputation. It is associated with such negative emotions as hate, jealousy, ridicule and disgust. It has been linked to outbursts of shouting, abuse, violence, rape and destruction. Anger is associated with ulcers, high blood pressure, and heart attack. It has no redemptive value whatsoever.

I’ve been struggling with this assumption of anger as a negative emotion. While it can lead to less healthy and helpful feelings, is getting angry entirely bad? Anger might sometimes lead to bad behavior, but is that always the case?

When TABs do something ridiculous, I feel angry. Talking about the event later, even when I use humor, my anger is apparent to many. Based on anger’s bad reputation, my response to suboptimal TAB behavior has been called into question. “Jen, you are so angry. Why is that? It can’t be good.”

Oh, really? Can’t it?

I live in a world where my value is underestimated and who I am as a person completely misconstrued on a routine basis. I am subjected to a lot of actions I dislike. Furthermore, my life is shaped by these attitudes and assumptions. (If nobody sees me as datable, then bottom line is lack of sex. I’m pissed about that.)

There is an awesome quote by Krishnamurti: “It is no measure of health to be well adjusted to a profoundly sick society.” In other words, getting angry at a world that sees disability as ours does is not a bad thing. Getting angry at sexism, racism or homophobia is not a negative state. It is healthy to perceive societal sickness and have a negative response to it.

What is not alright is to be eaten up by the anger so that you become an angry person. It is equally undesirable for the anger to lead to health problems. Finally, if anger fuels bad behavior, it is not a good outcome. The question then becomes whether or not the anger is healthful or harmful.

My anger about society’s attitudes and behavior surrounding disability feels like a clear, cleansing presence. A person does something ignorant and on my good days, I become filled with a bright light. It burns away all the potential negative beliefs I’d otherwise internalize.

To me, the “bad” response to TAB ignorance is to think the world is right. That leaves me feeling worthless, small and useless. It feeds depression, low self-esteem and a sense of pointlessness because if they are right that I am less, what is the point of life? Sucking up resources when you give nothing positive back in return seems wrong to me.

Anger, though, clears out the emotional dark. Moreover, it fuels my desire to change the world. Anger is what makes me educate those I encounter with suboptimal beliefs. Anger keeps me trying even when it’s the fourth time in twenty-four hours that I’ve been treated like I’m three. Anger keeps me writing and talking and explaining and trying to change the world.

My passion –the thing I want to achieve above all other things in my life – is altering how society views disability. Anger keeps me trying to do this. It is motivation and feeds my hope that change will come. It doesn’t weigh me down. It lifts me up.

I can understand viewing anger negatively when the impact on the individual is harmful. How, though, is my anger doing me or the world around me harm?

A fire can burn. A fire can be a warm, comforting presence. Who is to say anger isn’t the same?

The Ring Theory

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.

 

……because

It all began when a person in a wheelchair boarded my bus and the driver made the person with the cart move to a seat where the cart would obstruct the aisle. I was not asked to move, but after the bus got underway again, I turned to the cart’s owner and suggested I relocate so she could have a seat where the cart would fit. In the process, I bumped my head.

……because I tried to help.

Next stop my psychiatrist’s office. Typically, his patients flip a switch to indicate their arrival. I cannot do this since there are no accessible labels and I cannot seem to retain the switch location in my head. It has never been an issue in the two years I’ve been seeing him — he’s always come out into the waiting room to retrieve me. This time around, when I had waited ten minutes past my allotted time and could hear him speaking back in his office, I called leaving a message on his voicemail indicating my presence. Another patient eventually arrived, flipped the switch and my doctor materialized, seeming surprised at my presence.

When I said, “Um, I don’t know which switch to flip and this has never been a problem before,” his reply blew my mind. “I just thought you weren’t coming. I never thought about the switch.”

……because I’m so unreliable.

Next was the man by the elevator. He clearly wanted to be helpful, did not know how and used hovering as a means to deal with his internal conflict. He kept telling me things I already knew or was working on figuring out and then continued WATCHING me.

He did alert me to the goo stuck to Camille’s leg, becoming flustered when his phone rang while he was trying to pull it off. I waved him away, determined removal by pulling wasn’t going to work and took off. While waiting for the bus, I used the handy scissors on my pocket knife to remove the goo-matted fur from Camille’s leg.

……because boy scouts have nothing on me.

Once again on the bus, I was sharing a three-person seat with a man, who moved when an elderly woman joined us. The woman made loud, critical declarations about his behavior and I think I offered something like, “Maybe he thought three people and a dog was too much on one seat and decided to give us some space.”

Then the woman began to tell me about her blind neighbor. This *never* turns out well. Ever. Her neighbor was “so amazing” for doing everything on her own, even shopping. She could cook, too. It was all just so amazing that she thought the woman couldn’t possibly be blind and had an argument with another neighbor about it. I suggested maybe she could change her definition of what a blind person could do.

I was then told about how this blind woman assembled her nephew’s birthday present on her own, using screwdrivers and everything. “Amazing” was repeated a few more times. I said I liked to assemble furniture.

The topic shifted to her evening’s attendance at a baseball game. She has back trouble and the stairs are really steep. I commented that it sucked that ball parks weren’t accessible to everyone.

She thought it was just wonderful that strangers would reach out and offer their arm so she could descend the stairs. I repeated my comment about lack of accessibility. She repeated that people were just so wonderful.

……because “wonderful” and “amazing” hadn’t been said enough.

Off the bus and walking home, I was crossing a street when not one, not two, not three but FOUR skateboarders whizzed past me while I was in the middle of the street, startling Cam so much she actually moved sideways and stopped in her tracks..

……because the joy of boarding trumps the safety of others.

Upon arriving home, I yelled “ARGH!” at the top of my lungs and then did it a few more times. Camille went and had a drink of water. About when I stopped the yelling, she walked over and vomited up… everything at my feet.

……because a comedic author is clearly crafting the story of my life.

Perspective

At FabTherapists’s recommendation, I have joined group therapy. After two sessions, the jury is still out as to whether or not it will be beneficial. One goal is for me to intentionally work on how I interact with non-disabled people in an environment where I can get feedback. In other words, if another group member offered me help I didn’t need, I could actually question the person about the impact of my response and their initial motivation.

Last week, someone discussed how their job was making them unhappy and stressed. As they were leaving work ruminating on this, they walked past a vet who was a double amputee and “it put my stuff into perspective.”

I hate when people do this and had a rather intense response. It did not go well and the therapist said, “That pushed your buttons. Next week how about you come back and explain why.” I decided that a blog entry would be an excellent way to clarify my thinking.

My first objection is that life stressors should not be compared. Each of us is a unique individual possessing certain personality traits, backgrounds, coping abilities, resources and so forth. How we each deal with life stressors should be viewed separately in the context of who and what we are. Invalidating your own life stressors based on your perception of others’ circumstances being worse minimizes and invalidates what might be a truly distressing situation for you. It’s not fair to do that to yourself.

My second objection has to do with the way disability is being viewed. To make a comparison, an impression of what the disabled person’s life must be like has to be formed. What is that impression based upon?

All the societal beliefs about disability that we are taught come into play to create a picture of what that person’s life must be like. Often, such knowledge is based on inaccurate information, distorted images portrayed by the media, stereotypes and misconceptions. It eventually boils down to seeing the life of the person with a disability as being les happy, more burdened, less rewarding and more stressful. The person with a disability is suddenly relegated to a place of less, lacking and unhopeful.

When I have questioned those who view my life as “hard,” I hear about how it must be awful not to be able to see x, y and z, how I can’t enjoy a, b, or c, and how I won’t ever be able to do j, k or l. I *never* hear about how my life must be hard because I live in a world that sees me as less, has distorted ideas about blindness, treats me as a child and refuses to perceive my value. Which do you think is actually what I would label the “hard” part of my life?

And that’s the reason why what my fellow group member said bothered me to such a degree. They just diminished the double amputee vet to a “hard” life based on physical limits. He wasn’t a father, brother, or lover. He was someone whose life must be so stressful that it makes one grateful for the paltry stress they have. Personhood was stripped away. Value was ignored.

It isn’t that much of a leap to go from “They just reduced that man to nothing” to “Do they see me as nothing?” I struggle every day to find ways to be valued for who I am, to be connected by love and affection to other people and to live my life authentically. The last thing I want is for my life to be reduced to someone’s means to feel better about their own existence. *I* just got lost in that equation and used in the process.

To answer my group therapist’s inevitable question, “How does that make you feel?”

Devalued. Invisible. Used. Angry. Frustrated. Resigned. Tired. Hopeless. Sad.

Worthless. Scared.