Tag Archives: therapy

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.

 

An Inconvenient Truth

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  • Social isolation has been a blight plaguing me for a long time. Ten years ago, when I first began attempting to eradicate it, I acted as if I was the cause. Obviously, I was behaving in a socially abhorrent manner to the point that people actively avoided my company.

Informed by the feedback of others and anything pop psychology had to say, I began rehabilitating my personality and behaviors. “Maybe you talk too much.” “You should have a list of possible topics to discuss.” “Are you showing interest in other people?” “It is your job to put others at ease.” “You need to be understanding of other’s ignorance, educate them and then be patient.” “You need to try harder.” Everything I tried failed and I thought this meant I had failed.

Nobody likes to see themselves as a failure, so I searched for another explanation and began considering how chronic illness limited my outside activities. Without a job and active lifestyle, I was not encountering The Magic Number of People required to find close friends. Armed with this explanation, I got creative about using my energy and became more active in the world beyond my doorstep.

Guess what? Stepping outside did not launch me into a crowd of close friends. Because I kept hearing that doing what you loved would bring people like you into your sphere and be transformative, I modified my approach. Still wasn’t surrounded by a circle of intimates.

I went back to the hypothesis that chronic illness was simply too limiting and added to it. Perhaps blindness’s impact on social interactions, making eye contact, facial expression and nonverbal communication impossible, was severely limiting my ability to connect with others. Concluding the situation was beyond a mere mortal’s control, I gave up.

With nothing better to do, I began working on building my skill set by volunteering and joining a blind group. Now busier than ever, I still cannot find intimate connections, so maybe it isn’t my chronic illness’s limitations? Immersed in a community equally unable to engage in nonverbal communication, I did not suddenly sprout intimate connections, so maybe it isn’t blindness’s fault? Eighteen months of psychotherapy and the only consequence is a therapist who enjoys my company to the point that I had to ask him to enjoy me less and treat me more, so maybe I don’t have a huge personality flaw?

Here is the inconvenient truth that everyone on the planet seems to wish to avoid admitting: Disability makes non-disabled people uncomfortable and there is not a damned thing the person with the disability can do about it. Yes, as a society, we have made great strides in accepting physical difference, but we have not reached the point where having a disability is to simply possess another form of human variation. Eventually, we will arrive at the place I dream about, but not next month or next year. This type of fundamental change moves slower than glaciers and all I can do is my part to keep the process headed in a good direction.

You know what would really help? People not pretending we live in enlightened times where my disability isn’t leading to social isolation. The creative delusions that it is somehow my failing and thus my problem to fix is not only untrue but actively damaging to me and more importantly millions of others. I’m not asking anyone to become my new best friend, but could you at least stop believing this is about me? It’s about all of us.

 

This year I again proudly participate in Blogging Against Disablism Day 2014. For more information, please go to:

fhttp://tinyurl.com/BADday201Blogging Against Disablism Day 2014

Perspective

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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.

Grated Cheese

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No, I’m not going to make some esoteric comparison between grated cheese and some aspect of disability. This is simply a story about grated cheese.

To demonstrate that my stressed-out state heads more in the direction of depression than anxiety, I told my psychiatrist (not FabTherapist) about the following event:

Getting ready to make an omelet, I went to the refrigerator to fetch the sautéed vegetables I had, the already grated cheddar and other useful ingredients. The Ziploc bag of cheese was not where I’d left it. It wasn’t next to where I had left it. It wasn’t anywhere that I looked.

So, I sat down on the floor before the open fridge and sobbed. Inconsolably.

My psychiatrist said, “Well, that’s about your disability…”

Um, until that very moment, I hadn’t thought about it in those terms. I was just a person who couldn’t find something and had a very intense, dramatic response. Blindness had nothing to do with it. The thought, “If I could see, I could find the stupid cheese,” never crossed my mind.

The psychiatrist, though, went there immediately. I find that fascinating.

Magic Words

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About a year ago, I hit a wall known as My social Life Sucks. Nothing I tried – and I tried everything short of a personality transplant — seemed to increase my social connections or generate more emotional intimacy in my life.

Enter my fabulous therapist – a fifty-year-old man who somehow gets it. He’s made it clear from day one that he knows nothing about disability, yet I felt more understood in my first session than I have with the majority of my friends. When I tell him I think I get ignored in groups because I’m disabled, he not only believes me but understands why it happens. That’s valuable in a way words cannot express.

We have hit an impasse related to my social interactions with non-disabled people. FabTherapist believes there are a string of words I can say that possess sufficient potency to get people to notice who I am. A carefully crafted handful of sentences have the power to shift perception from “Blind, incapable, weird looking person” to “Smart, funny, intelligent woman.” His argument is that people meet someone like me and suddenly don’t know their role. For a stranger, the situation is full of unknowns, fears and a general sense of uncertainty. Giving them some context and a function in the social dynamic will allow them to feel comfortable with me, freeing them to notice who I am.

I believe words have power. They don’t have that much power. Non-disabled people need time and exposure to move past their initial impression. The problem is that most don’t take that time and in fact, their subconscious writes me off often without consulting the conscious mind. There are no magic words to subjugate this process.

Okay, there is something that has the power to derail things – shock. It’s why some women with disabilities dress provocatively — to shock potential dates out of the “not sexual” mindset.

What would I need to do in order to shock people? Would that be in line with my personality?

“Yes, I’m blind. Be careful. You don’t want that to cause you to underestimate me. That would be a bad idea.” The last sentence would be delivered with a slow smile. Not even sure I’m capable of a slow smile on purpose let alone uttering those words.

If I could conjure up the MagicWords, I still get stuck on the idea that I should have to say them. It’s not my job nor should I take on the task of easing non-disabled people past their prejudice. Disability is not exclusively the responsibility of the disabled. As a society we have created this state of affairs and as a society we should deal with it.

Besides, if I noticeably aid people in coping with their discomfort, I’ve set a precedent. “You made me comfortable, Jen. Now, when it comes to your disability, I expect you to do all the rest of the work too.” Do I want to establish such a pattern?

Yet, inaction will not change anything. Principles are great, but they don’t make you feel loved and valued.

Besides, women have needs. And hormones. and needs that go beyond hormones.

Reason’s Vanquisher

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In excruciating detail, I can create a voluminous list of all the ways it is communicated to me that I am of less value because I am disabled.  I can then offer explanations and arguments to counteract each item.  My skills are sufficient to convince you that I have worth.

 

Now if it would only work on myself.  Reason is a wonderful tool that is not adequate to the challenge of conquering the emotions of irrelevance and devaluation that currently rule my insides.  My reason lacks the tensile strength to overcome the indomitable force these negative thoughts and emotions wield.

 

The depression I’m experiencing because of current life stress and mental health issues definitely saps reason’s strength.  It does not, however, generate the need for reason to be so powerful.  the might reason would need to surmount the negativity is defined by the power of that negativity.

 

What is responsible for negativity’s capacity to overpower reason?  Society in general and the individuals that act out its beliefs in particular.

 

The thoughts and feelings an individual has about disability informs their actions and those actions transmit those beliefs to people with disabilities.  Complimenting a mundane task demonstrates the lower expectations used to judge the person with a disability.  Refusal to accept a “No thanks” to an offer of help illustrates devaluation of the disabled person’s judgment.  Even running up from behind to hold a door for a person with a disability conveys the assumption that the person was unable to do it themselves.

 

Whether it is meant or not, whether it is intentional or not and whether the intricacies are understood or not, behavior communicates beliefs and those beliefs have power.  A lot of power.  Counteracting them takes a significant and constant force of will.  It is a battle people with disabilities engage in each and every day.  It is a war without an end in sight where victory is never possible because the “enemy” has an endless supply of assets.

 

There are a lot of battles I’m currently fighting and they are consuming vast resources.  I have nothing left to wage war against the societal devaluation that comes at me without end.

 

Words and deeds matter.  Take care that you are not unintentionally contributing to the strength of the negativity people with disabilities must beat back each and every day.  And, if you need self-interest as motivation, remember that non-disabled people become disabled each and every day.  The negativity you put out there might turn on you down the road.  Do you want to battle it?

 

Lackadaisical Me?

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If you are doing therapy “right,” the work of it doesn’t solely happen in the fifty minutes you sit in an armchair and spill your guts. To encourage forward momentum, some practitioners assign homework. Mine has not taken this step, yet I seem to be an entity that once in motion continues.

The reason I sought out a professional was my utter unhappiness with my life, specifically the lack of emotional intimacy, the absence of a collection of people who support me through the rough patches and resilience within myself to make it through hard times. I felt alone, drained and completely unable to figure out how to fix it. I lay the blame for the first to on the doorstep of a society that perpetuates untrue beliefs about disability that form the burier between me and other people. I sought a professional to help me decide if I had to accept that or if I could change it. Somehow. I wasn’t optimistic.

Slightly over two weeks ago, I had a painful conversation with a friend that resulted in a mutual decision to be less in each other’s lives. It left me with one local friend who I can count upon no matter what. I thought I’d be crushed by this fact, but I’ve been oddly curious. I want to know what happens next.

It also appears to be contributing to my growing feeling that I must clear out my life in order to move forward. Anything that isn’t working is vulnerable to being eighty-sixed from my universe. And when I follow that urge, I feel good about the consequences.

At least the immediate consequences. I have serious concerns that I will resolve what I need to in therapy and look up to find my life is gone making me more alone and isolated.

But if therapy works, won’t I have replaced the things that aren’t serving me well with things that are? This clearing of the decks is a way to make the space and free up the energy to build something better, stronger and fulfilling, right? Right?

The weirdest thing has happened. I no longer can even write a sentence about all this that contemplates failure. “When trying to build something better fails” literally feels like a lie. I don’t think it’s a healthy, optimistic perspective so much as faith in a non-disabled, never-treated-a-disabled-person therapist I’ve found. That’s just unfathomable. And possibly a very bad idea. Oh well.

And that’s even stranger. I actually don’t care if I’m making a mistake because it doesn’t feel like a mistake. It feels like I’m a combination of an adventurer and mad scientist. “Let’s see the consequences of these actions and what adventures they bring.”

What is going on with me? Anyone?

It’s Been……

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Months. Far too many months. Fortunately, I did not make any promises about posting regularly since they would have been broken. Into tiny slivers.

I now know why I wasn’t writing – to preserve what little mental stability I had left. Writing this blog is intense because in trying to live up to my commitment of sharing the good, the bad and the ugly, I not only have to unearth buried emotions, but I then must turn over rocks to study what’s beneath. I don’t mind physical worms and slugs. The emotional ones, on the other hand, aren’t fun. Barely keeping it together, examining the unpleasant wasn’t a wise move.

I’m better now. Not great, not fixed and definitely not at my best. Just better.

I did learn one very valuable lesson. A bad therapist can make it so much worse. That was last summer and early fall. A good therapist, in contrast, helps, not in any miraculous way, but subtly. I found the good therapist in December.

Over the past few months, I did do some writing. For now, I’m going to post something new each week and pull out something old as well.