Severe, Chronic, Complex Post Traumatic Stress Disorder (PTSD) can be debilitating. How any person got there is a personal path, how I work to live with it is what my journey has been about since 2004. However, It was not until July of 2008 that I hit my rock bottom. I no longer could tolerate life as I knew it. I was physically, mentally, and emotionally depleted. I had limited my going out of the condo for anything other than therapy appointments which I was going to three times a week. I had to take a cab or call my husband for a ride to get to my appointments because walking was too much. I did not have the physical energy to walk the 20 minutes to the office. Also, I could not handle the noise, lights, traffic, and crowds. They overwhelmed my senses and I became dissociative. I could no longer drive because I could not focus on all the chaos of driving in a busy town and city. I had limited or no contact with family and friends. I was in and out of Emergency rooms and doctors’ offices for a vast array of medical issues which left me depleted and physically ill. I had incredible body pain, headaches, fatigue, breathing, and heart complications. I kept getting diagnoses of Reflex Sympathetic Dystrophy, Fibromyalgia, Irregular Heartbeat and other chronic pain illnesses. The emergency doctors would ask if maybe I had anxiety but I didn’t think anxiety alone could explain my very real physical problems. Simple self care was challenging. I had difficulty with eating, sleeping, dressing and even getting my teeth brushed.
I knew that I had to do something or it would kill me. I searched and found Sierra Tuscon Psychiatric Hospital in Tuscon, Arizona. I entered a 4 to 6 week program for Chronic Pain and Trauma. After 2 weeks I left because I could not take the noise and confusion of a Psychiatric Hospital. After a week back at home, I still could not tolerate life so I had to go back. I went back for a 4 week Trauma Program only. While at Sierra Tuscon, I learned a lot about chronic pain and trauma. I attended a lot of workshops and group sessions but the biggest thing that had an impact on me was the writing of a timeline of my life. I was able to write down everything that happened in my life, the great things and challenging things, that brought me to this moment in time. After 2 weeks at Sierra Tuscon, I once again became overwhelmed by all the stimuli and happenings in the unit. I no longer could eat or sleep and all I did was shake uncontrollably. My team leader felt the environment was too overstimulating as well and thought I would do better in a one on one rehabilitation program. I then went to Maui Intensive Program. It was here that I got to share my timeline with 2 women. After sharing all the significant moments of my life, we then burned the timeline together. This exercise was invaluable because after leaving this treatment program I discovered I had a choice. I could choose to go back to traumatic moments and relive them again or I could chose to tell myself I can let go of the past and refocus on something else. I have practiced doing that to the present day. I still have moments of flashbacks, nightmares, and memories but I am able to move through them much quicker. The writing of the timeline was a key piece to my recovery.
My treatment plan after Sierra Tuscon and Maui Intensive Program included attending recovery programs, therapy twice a week, daily physical exercise and a Dialectical Behavioral Therapy Program. ( I had done an intensive 2 week Dialectical Behavioral Therapy Outpatient Program before Sierra Tuscon but I was so caught up in the trauma I could not relate or hear any information from this intensive program.) I continued my therapy twice a week and attended a Dialectical Behavioral Program at the Trauma Center in Brookline, MA once a week for 1 ½ years. Each week we would learn a new skill and then take the week to practice the skill. The following week we would discuss our new learnings. I still had difficulty leaving the condo because of the stimulation of living in a busy town close to the city and my fatigue and pain were high so I was unable to attend recovery meetings or implement a daily exercise program.
Almost a year after my treatment at Sierra Tuscon and Maui Intensive Program (2008), I moved to New Hampshire, 2 hours from Boston, MA. My husband and I decided during the intensive treatment in Maui that we wanted a simpler and quieter life and we knew we could find that in New Hampshire. This move was where I was able to really start my recovery and start to heal my central nervous system. My central nervous system was not overwhelmed from the hustle and bustle of a busy city life. I was no longer around lots of noise and commotion. There was a serious reduction in stimuli in my environment. Life was at a much slower pace and choices were much more simplified. The nearest traffic light was fourteen miles away and the roads were much quieter so I was able to become more independent because I could drive. Because I could drive here, I was able to attend recovery meetings and go to the gym where I began a walking program. Also, I was able to take on the responsibility for food shopping for my family. These were key pieces of my treatment program but I was unable to do them before because I found life in a busy town too much to bear. I believe it was moving to New Hampshire that I was able to find some sense of external safety and I realized I could not begin to find internal safety until I felt safe in my external environment. I needed to be in a quieter, simpler, and calmer environment, although I do still have trauma symptoms when the darkness falls each day and when I am in isolated areas. (It could be as simple as walking down the street and only one car comes by. I would be terrified that the people in the car would hurt me because I was alone and therefore vulnerable.) I continued my Dialectical Behavioral Therapy and my one on one therapy 2 times a week. I would travel to Boston by bus for these appointments. It was on these bus rides where I was able to read a book. I hadn’t been able to read a book for several years because I had difficulty focusing and remembering what I was reading. At Sierra Tuscon, I was given a book called Waking the Tiger: Healing Trauma by Peter Levine. It was this book that became my bible for learning about PTSD even though I don’t agree with everything in the book.
Each of these experiences – Sierra Tuscon, Maui Intensive, Trauma Center, and Peter Levine’s book – have contributed to my beginning to learn to live with severe, chronic, complex PTSD and what I call Traumatic Thinking but it has taken me 3 years to get to this point. The first 2 years I was overwhelmed by the emotional mind and always felt threatened. However, my biweekly therapy sessions are the place where I get to sort out and come to some peace and understanding of how I can live with PTSD. I will be ever grateful for this special time and place.
PTSD and Traumatic Thinking
Because of my life experiences and because of the energy associated with unresolved trauma, I have become a very finely tuned baby grand piano. Like a baby grand, I am extremely sensitive to any changes in my internal and external worlds. There is nothing wrong with me; I am just sensitive to these changes and feel them intensely. These changes of fluctuations bring about a change in my energy level. This embodied energy change causes me to become easily aroused. This arousal state causes fear and panic because I do not know what is happening to me physically and I feel powerless to control it. This brings about a hypervigilant state. When I become hypervigilant, I see any energetic change as a perceived or imagined threat and I then constrict my muscles or freeze and dissociate. Dissociation and muscle constriction cause chronic pain, chronic fatigue, confusion, and forgetfulness. This cycle of an initial energy change to arousal to hypervigilant state or high alert can be caused by any emotion, thought, or experience. The energy that sometimes gives my life meaning, purpose, and empowerment can be also distressing causing a high alert state. It’s like your life giving energy triggers your arousal response which then trigger your hypervigilance. Once this cycle has started, my ability to deal with the everyday stresses life brings becomes daunting. It was this cycle, not yet understood, that led to my hitting rock bottom in 2008.
This vicious cycle has happened to me since my earliest memories. It is part of my makeup between my brain and my body now. It just kept building and building until I could no longer function or live the “normal life”. I do know that I need to stop being angry at myself because of what happens with my brain and body. I am hardwired for this type of distress having lived like this for 45 years. There is nothing inherently bad or wrong about me, I just have had undealt with traumatic energy my whole life causing me to live with a hyperaroused amygdala. At this point, my neurological system, my emotional and mental worlds are built to be in conflict or distressed. If I am not in danger, I will create internal suffering, conflict or distress. I need to just own that my personality and my neurobiology were so deeply affected by my past that they tend to need to be in conflict or crisis so my hypervigilance can be explained.
Unresolved traumatic energy has brought me to a point where I get easily confused when overwhelmed by the simplest frustrations and I am more prone to what people call negative emotions of fear, anxiety, anger, hatred, and definitely shame. It is something that I just have. It is how my brain and personality developed because of unresolved traumatic energy. I don’t need to hate myself because I am more prone to negative emotions and symptoms of PTSD. It is part of my nature and personality. I don’t need to be ashamed of it anymore. I just need to know that I am wired like this and that the intense feelings, arousal, and hypervigilancy will pass. I will get back to a safer, more comfortable place again.
My social and mental processes are definitely affected by my PTSD. It is hard for me to attend to conversations. I can be in a conversation with one or more people and after a few minutes of dialogue everyone becomes a talking head. I hear them speaking but cannot take on what they are saying. I find it difficult to process or respond in conversations so social situations are difficult for me. I am more comfortable when I am alone or in one-to-one conversations. I don’t get this mental block or fogginess from being overstimulated. I have difficulty with reading and multiple processes or directions because I am unable to focus. I need not feel shame because of my social and mental challenges; they are just part of my PTSD. I can limit situations which heighten my overstimulation and learn to rest after social situations like weddings, parties and gatherings of friends. I have come to know that these experiences of mental blocks or fogginess will pass if I allow myself to rest or quietly soothe myself after I have the experience.
I am learning that because I am distressed does not mean that I am unsafe internally or externally. I understand now that the distress is a physiological response. When I become hypervigilant or at high alert my muscles tighten and constrict leaving me uncomfortable. I do not need to get a secondary emotion of shame and anger for my physiological response.
I am learning to negotiate trigger events for my PTSD. I am triggered when darkness comes each day. One day I wrote in my journal,
“I am learning not to panic because I am so uncomfortable. My hypervigilance is high. Remembering that this uncomfortableness will pass with daylight. Can’t avoid the darkness. I am crawling out of my skin. I know the feeling will pass. I look forward to going to bed and having light in the morning. This night is really difficult. Remembering that this distress will pass. I am frustrated by feeling so uncomfortable, unsafe. Starting to get angry at myself for my distressing fear of darkness.”
Another sample of a triggering event was when I was on vacation with my husband.
“Yesterday I was out for a walk with my husband. This man came walking up behind us. I could see his shadow getting closer and closer. It was extremely uncomfortable. I feared for my safety. I felt physically in danger. There were other people driving by us as well as others running and walking but I still feared for my safety. I do not need to be angry at myself for this level of fear. It is an embodied fear. I feel sad and angry that I am wired like this because of my life experiences. I just need to know that I am wired like this and that the intense feelings and hypervigilance will pass. I will get back to a safer place again. These experiences take a lot of physical energy away and have an impact on my central nervous system so I need to be patient and gentle with myself. I need to take the time to do something nurturing for myself when I have these episodes.”
With my PTSD, I definitely have my good and bad days. Several of my journal entries show how I am feeling on a bad day.
“How do I manage all the feelings and suffering I am going through. The feelings of danger are all around me, the quest for the future so bleak. Death and destruction are all around me. I’m caught by all the fear. The anguish is almost intolerable.”
“Fear that is why I suffer so much. I feel like a caged rat waiting to be destroyed by some larger more dangerous animal. I can’t do anything to free myself of the cage – trapped inside waiting for death to come.”
“PTSD is like living in hell some days.”
Nothing can cure my distress but I have the ability to manage it more and more. It is the way I am built physically, mentally, emotionally, and energetically. Nothing will take that away but I can learn to manage it better and celebrate moments when it feels bearable. I am human and have PTSD; therefore I live in acute distress. I must accept that I have Post Traumatic Stress Disorder. I need to accept that I will live my life uncomfortably so I must celebrate and enjoy the moments when I don’t feel dread and internal conflict.
My PTSD is considered to be severe because of unresolved traumatic energy from my past. Because I had unresolved traumatic energy, I believe I developed a manner of thinking that I call Traumatic Thinking. When I listen to people in my recovery groups I hear similar ways of thinking.
I fear things that I have no control over. I have no control over people, places and things. I have no control over the economy, the future, aging, the car breaking down and having to trust a mechanic. I have no control over the plumber or whether I have a house fire. I just imagine the worst thing happening rendering me helpless and vulnerable to other people, places and things. The feeling of no control makes me feel very unsafe.
All I think about is what can go wrong. I think of how life’s processes will hurt. I always have this feeling of some impending doom or catastrophe is about to happen. There is a place inside of me that keeps looking for what will next make me powerless, who will next take advantage of me and what bad thing is going to happen next. Because my unresolved traumatic energy started in my early years, my brain and personality have developed around these messages. Therefore, my brain has been wired for distress, chaos and crisis. It feels like any challenge in life is going to be my demise.
For someone with traumatic thinking life is a daily chore. You struggle with constant fear, anxiety, sadness, resentments, shame and impending doom. For me, it completely affects my body with fatigue, muscle tightness and nerve pain. It affects my mental abilities – loss of memory, loss of concentration and focus, periods of confusion and chaos, and dissociation. So much time is spent trying to attend to any conversation without dissociating because information is coming at me that I cannot process. Emotionally I am prone to negative emotions and fragmentation. It is hard for me to feel any curiosity, pleasure and joy as I write in one journal entry.
It is sad having little room for curiosity, pleasure and joy but that is how it feels right now. My feeling of being constantly threatened by life in general is both mental and physical. I should say that the energy that comes with feeling threatened is hard to release from my body. I definitely constrict when the danger energy comes in.
I am working hard to remember that right now I am safe and loved. Can’t control the economy, other people, the housing market etc. The hypervigilance is such a physical response. I feel I have this strong belief that everything could fall apart in a minute. My fear of being powerless or helpless really unearths me. I know intellectually that I am safe at this moment but it doesn’t take away how I feel physically. This deep feeling of dread comes over me. I get sad that I live like this. Living the basics of a day is a lot of discipline and drive for me. I guess I just have to do a lot of self talk to dispel the fear. Remembering that I am not afraid to die, I am afraid of being powerless or helpless. I have to feel the fear and let it pass. I need to remember to look at the things I do have control over – my behaviors and attitudes.
My traumatic thinking causes me pain and suffering. I am learning that if I accept the pain and suffering of living with PTSD and traumatic thinking and count on it to pass I will have moments of reprieve.
A basic question underlying PTSD is who or what next is going to leave me helpless or powerless? If you never feel safe and secure and this is your underlying question and belief, how do you live out the messiness of the human experience? How do you not get terrorized by life’s processes? This is the focus of my next article.