Part II: Brain Injury X-Posed: The Survivor's View
PhotoVoice II: Photographs and Narratives
PhotoVoice - Introduction
The exhibit was prepared by the participants and facilitators of an eight-week PhotoVoice project by members of the "Amazing" Brain Injury Survivor Support Group in Framingham, Massachusetts. The project took place from September through December 2009. The exhibit contains 48 photographs and narratives, grouped in eight categories:
- Lack of Understanding
PhotoVoice - Introduction (continued)
PhotoVoice is a process by which people can represent their lives, points of view, and experiences using photographs and narratives. This project was intended to provide an opportunity for support group members to:
- Reflect on living with brain injury.
- Use their brain in new ways and employ a variety of skills.
- Raise awareness about brain injury.
- Help health providers understand ways to support healing from brain injury.
PhotoVoice - Introduction (continued)
The project participants and facilitators met for approximately two hours a week for eight weeks. The participants:
- Took photographs (using their own cameras or disposable cameras provided) that "spoke" to them as brain injury survivors.
- As a group, they discussed their photographs, which led to discussions about their experience living with brain injury, their issues, concerns, and discoveries as brain injury survivors.
- Wrote narratives for selected photographs. Some chose titles.
- Determined categories for their photos and narratives.
- Reflected on their experience doing this project.
"Hit by a Bus" on the Road of Life
Life as I knew it changed forever. I wasn't actually hit by a bus, but it feels that way, when I had bad drug reactions and hit my head.
Stuck in a Moment
This is the Toyota Land Cruiser I was driving when the maroon car struck me from behind at high speed. In so many ways I feel stuck here, as if the accident is still happening and I’m frozen in that moment when the car that hit me drove me into the jersey barrier and I lost consciousness. There are times when I can still feel the impact, feel the sense of being airborne between the seat and seatbelt, feel the world spinning sideways and feel it all go black. In some way I am still waiting to wake up, to come to and be back in my life.
Every Day Is an "F"
No matter what the day brings and how hard I try to deal with it, every day’s net sum is failure. Every day my ability to deal with the normal flow of life from minute to minute is so much less than my abilities prior to the accident that I cannot help to recognize the failure and futility of trying to live my life as a functioning adult. Managing finances and managing my home and managing my gardens and managing my family life are all confusing and overwhelming. On a good day I can manage one thing for a short time, but never all the aspects of life that need to be managed.
A Language No One Else Speaks
In the story of Babel God curses the multitude by making everyone speak a different language, unknown to any other person.
Immediately following the accident I began speaking my own unknown language. It came out of my mouth naturally, like it was my native tongue. At the same time, English became very difficult to speak. I could not find the words I wanted, often finding completely inappropriate words or phrases or finding nothing at all. My jaw, tongue, throat and vocal cords quickly became fatigued, as if they could not easily form English words. This is still true today.
It seems to have a definite syntax and other’s, who have heard me speak it often, recognize common words and phrases. When I want or need to express any kind of emotion I speak in this new language instinctively. While this language feels and rings true to me, English often seems like a poor substitute that prevents me from accurately expressing myself. There are songs and chants in this language that I will find myself singing and that bring me great comfort.
I realize how crazy this sounds and so have to monitor my speech whenever I am with others. While it feels like my natural language I must hide it, keep it secret. I often find myself longing to be among others who speak my language, even though I would not understand them if they did. This adds to the feelings of isolation.
Something's Missing ...
Something has been missing from my mind on the left side ever since the head injury in 1996. Other events (medical and otherwise) since then, have enhanced this feeling. At times, there has been excruciating pain on the left side. I can't read books because my left eye doesn't track and pick up words well. Will I ever feel whole again? Will I ever read and enjoy a book again?
My Selfhood Is Locked Away
It seems as if so much of myself, so many of the attributes, the strengths, the characteristics that made me me are now locked away. It feels like I know they are there, and if I could just find the key I could unlock them again and be who I was for the first 50 years of my life. But the key is lost. So am I.
I Just Want to Be a Real Boy
This is something I’ve felt, and found myself saying to myself, quite often – “I just want to be a real boy.” This feeling of un-realness is unexplainable. I simply do not feel real anymore, or maybe the world is not real anymore. Either way, I’ve said this to myself for the past three years and did not take note of it as a recurring theme until I began this project.
The train is leaving me behind ... missing where to do, lonely even when not alone ...
Isolated - Always Alone
Since the accident I have felt completely isolated from everything and everyone. This picture could as well have been taken in a crowded city street or a family holiday gathering. No mater where or when, there always exists this deep feeling of alone-ness, this isolation that never lessens, never dissipates, never changes. Not only am I isolated from everyone else, but also from myself.
In the Dark
Am I in the dark, or is everyone around me?
Trapped by My Weight
Pain and heaviness in my upper body restricts me ... feeling trapped by my excess weight, which goes on so easily now.
Looking for Light
My new office, a little corner of a dark room trying to get to see light again ...
There's No Place Like Home
There is an ever-present sense of being lost in a strange land, unable to find myself or my place in the world. While it all looks the same, it does not feel the same. And so I feel a deep longing to go home, to go back to where I belong, to where I feel safe and at peace, to where I feel like me again. And I search for my own personal wizard, my own ruby slippers, my own way to be back where I belong. There’s a deep feeling that somewhere there is someone or something that can tell me how to do this. But after three years I realize that there probably is not.
Image shared under the Creative Commons Attribution-ShareAlike 3.0 License.
Lack of Understanding
Dazed and Confused
A combination of medication reactions and head injury in 1995 and 1996 left me unable to report what happened to me.
In 1995, after thyroid surgery, doctors prescribed medications that I had never taken before in my life, including steroids, painkillers, muscle relaxants and Ritalin. This led to a year of fluctuating symptoms including delusions, enhanced colors and strange visual effects. I could not report or describe my symptoms. In this state of mind, I hit my head very badly, and then I became deeply depressed.
How I Feel Now
Like an old tree, I am still recognized as who I used to be instead of how I am now; so different on the inside. Friends and even family are puzzled when I have to leave a crowded, noisy room or when I get confused if three or four people are talking at the same time.
Not Helped by Psychiatrists
The pain and confusion of being trapped in treatment that didn't help me, over and over.
I was admitted five times from 1996 – 1998. I was so confused and out of it, and unable to explain myself. Psychiatrists yelled at me, ignored me, and treated me very badly. My family was told I had serious mental illness for life. I was threatened with court ordered medication if I didn't voluntarily take my medications, but the medications made me so sick I couldn't take them. During intake for my fifth admission, I was asked if I hit my head. I told the nurse yes, that I hit my head previous to the third admission. Even this didn't change my treatment. I was given a choice of taking monthly Haldol injections, going to Westboro State Hospital, or taking Risperdal. I agreed to take the Risperdal. This caused me to walk constantly. I was in hell.
Surviving Questionable Treatments
The last 10 years have been episodes of questionable treatments, changing my appearance, and me, even further. Who is this person I have become? Will I survive this? My head injury didn't leave me with the best judgment about making medical choices, and doctors and dentists treated me without any coordination. I was desperate because of pain. I was trying to follow the instructions of all of my practitioners but I was guided in ways that were not helpful.
When I look back on my life since 1996 and my head injury, there are episodes of treatment, illness, and symptoms, but no long-term wellness. It seems endless and some of it, destructive. My appearance has changed so much that I hardly recognize my image in the mirrors. After surgery in 2003, I no longer can practice yoga or truly meditate well, and I no longer can get massage. After dental appliances in 2009, I have sleep apnea, which can't easily be treated, and I no longer can walk my dog for exercise. Prior to the dental appliances, I was no longer ableto walk up hills, without becoming nonverbal.
1995 – 1998: psychiatric admissions that neither helped nor identified what happened to me.
1999: an immune system breakdown that may have been triggered by medications, with months of immunosuppressant treatment for purpura and kidney complications, and clots that led to pulmonary embolism, and immediate menopause concurrent with the treatment.
2000: Excruciating facial pain
2001: Bad reaction to Zocor with muscle weakness, thyroid failure
2002 – 2005: Treatments in alternative medicine with Armour thyroid, steroids, vitamins, supplements, hormones, and chiropractors that didn't help the pain and changed me yet again.
2002 – 2005: Injury from Treatment with NTI dental appliance
2003: A septoplasty that wasn't just a septoplasty; a bone spur was removed as well. It did not give the results that the doctor said would result. After this, I could no longer practice yoga or get massage.
2004: I sought help in dermatology for bumps that were all over my face since immunosuppressance treatment; the dermatologist highly recommended treatment with Botox, liposuction, and laser on my face, and Restalyne injections. Why was a dermatologist doing liposuction?
2004 – 2005: Botox with pain neurologist, nasal sprays, nasal rinses, allergy medications
2005: Bad reaction to Cranio-sacral therapy recommended by a dentist.
2006: Heat on neck, and Thyroid treatment with different combinations of T4/T3, addition of Cymbalta. This seemed to be on the right track.
2007-2008: Attended Cardiac Wellness Program at the Mind-Body Institute; my neck Botox came undone with floor exercises, this triggered a series of changes ever since. I now take medications for blood pressure and heartburn, and I become more foggy over time. My nose has caved in. I had limited success with meditation and now, can't meditate at all.
2008 – 09: New dental appliances with disastrous results; increased fogginess and mental scrambling. My neck has been pushed forward and down since the dental appliances.
2009: Diagnosis of sleep apnea which is untreatable and which was never previously found in sleep studies; no easy way to treat it because of the surgery.
My brain injury left me with days which can be like clear skies or cloudy. Clear can turn to cloudy as soon as something starts to overwhelm me; rushing to get out the door, a change in my routine, too many things to get done.
Feeling very foggy recently, not able to sort things out well. My doctors are watching me and I hope they have a solution.
It Was the Best of Times, It Was the Worst of Times
Prior to the accident, I loved to go camping and fishing alone in Vermont. I thought nothing of packing the gear in my car, throwing the canoe on the roof, and heading north whenever the spirit moved me. This ended with the accident.
The fourth summer after the accident I was determined to take one trip alone. Preparing for the trip was so difficult that I called it off many times over the three days it took to pack for this three day trip. The four hour drive north was torture. Setting up camp and taking care of my needs was extremely challenging. The trip home took over eight hours; I could not manage the highway; we had to take the slow road south.
When we arrive home I counted the trip a success because I made it home, I survived the trip. While this may sound melodramatic and exaggerated, it is a simple fact. The chances that I would not survive this trip were significant. The fear associated with the trip was tremendous. The anxiety of it was at times overwhelming.
The trip was a failure because it so clearly demonstrated to me that one of the defining pleasures of my life was over, finished, completely out of reach. While I proved to myself that I could do, it was not a pleasure, it was not an escape, it was not the revitalizing and energizing experience it once was. It was, in a very real sense, torture.
This is how I can sometimes feel in the morning — if I can sleep, if I don't have to rush to get out early. How quickly it can disentegrate when something unexpected happens.
Talking is often like trying to herd pigeons. If you go slow and are calm and relaxed you can get most of the words to go where you want them to go, but if you need to respond quickly or urgently the words scatter in flight and you are stuck with whatever words fly out of your mouth. Some may approximate your intentions; others may be way off the mark.
Like a Hamster on a Wheel
Having a brain injury doesn't exempt me from the everyday chores everyone has. The big difference is the huge amount of time it takes me to do them. When I lose my focus I wander from one thing to another, as I see something else to be done and lose track of my original "plan." Nothing seems to be completed, even when I am constantly in motion, always trying to catch up.
Cognitive fatigue is an ever-present condition. The end result is that at any time during the day I can reach the end of my cognitive ability, my mental capabilities. Just as a car will continue to run until it is empty, then be unable to continue, so it is with my brain. When I reach the end, when cognitive fatigue reaches critical mass, I am suddenly empty. I'm done. I cannot continue on any level, I cannot form words, I cannot drive, I cannot think. I'm empty and cannot continue until I can crash, rest, sleep, be insulated from any people, even family. I need to collapse like a black hole, drawing inward until I’m insulated from every one every thing.
Out of Sight, Out of Mind
Please don't give me a gift card unless you glue it to a boat anchor! So small that I lose them, even in my purse. Out of sight is literally out of mind. If I don't see it, I don't remember it.
Where Are My Glasses?
This shows my desk with my glasses exactly where they were when I lost them. I was sitting at my desk when I put them down as I normally do. A minute or two later I could not find them. I was still sitting at my desk. I panicked and spent the next 30 minutes or so searching the house. I came back to my desk and looked a number of times while searching.
I finally realized that while I was searching for something called glasses, I had no visual image of what glasses looked like. I have difficulty locating objects if I do not consciously keep an image of the item in my mind. This duality, I know what I am searching for and I do not know what I am searching for, is also expressed in other aspects of my daily experiences.
This duality, I know what I am searching for and I do not know what I am searching for, is also expressed in other aspects of my daily experiences.
I know what I am doing and do not know what I am doing at the same time. This is almost always true.
This is a parallel to my life. The moment of the accident I lost my life. But how can you lose your life when it is right there in front of you. Same way I lost my glasses. It’s right there, but I cannot see it, cannot get to it.
The phone in also in the exact location it was in when I lost it. Same scenario.
What Do I Do Now?
After the accident it was as if my body was replaced by one that looked the same but the controls were different and I didn't quite know how to work them. While I could walk, it was difficult and took concentration. About a year later I was walking down this flight of stairs when, in mid-step, I forgot what to do next. My feet were confused and I tried to pick up the upper foot while the lower foot was still in mid-step. This type of confusion was a part of all movements, all attempts to navigate my physical body in the physical world. It was and is cognitively draining to work this unfamiliar body. While I’ve gotten better at it over time, it still does not feel like the body I occupied for fifty years. It is still work to operate it.
A Mess #1
How does this happen ...
A Mess #2
It's clean now or ...
A Mess #3
Has it simply moved???
Thoughts, emotions, a chopped up list of things to do; all bubbling and rushing through my brain. All competing to be paid attention to first.
Seeing and Not Seeing at the Same Time
Busy places often seem very out of focus to me now. Not in a visual sense but in a mental sense. I can see everything but I cannot get my head around the scene. It’s like there is too much visual input and it becomes quickly confusing and disorienting. It is all a mental blur, filled with too much, like visual shouting. It drains my mind and I have to escape, retreat.
The wheel stops turning when the water is diverted. My brain stops working well when it's energy is diverted. Too much competing stimulation; radio on, people talking at once, trying to remember what I have to do now, can make my brain "freeze." Until I can stop, rest, and get quiet, nothing really works.
All Lined Up and Ready to Go
Leaving the house for any reason takes a lot of planning. If it is a day trip or a meeting or appointment I have to get everything ready the night before no matter what time I have to leave the next day. Everything I need to bring has to be put on the dining room table in a line or it will be forgotten. Things that it was always second nature to bring, like a wallet, cell phone or glasses now need to be very deliberately remembered each and every time. Even using this strategy I often find myself without something important.
Directions short and clear needed for me to know what to do, where to go ... Extended Day Program is better for my son than spending time with me???
Am I Hungry? Have I Eaten?
Managing simple daily physical needs is now a complex set of tasks that can take all my focus and energy. My body and mind do not communicate like they once did, so I am not sure if I am hungry, I don't know when I am thirsty. Taking care of very basic needs now has to be tracked and monitored. I've gone entire days without eating, and as the day progresses I go rapidly downhill, energy depleting, cognitive ability crashing, never realizing that I haven't eaten, that I'm hungry. Same thing goes for drinking.
This also applies to the physical consequences of the accident. I can be in a great deal of pain and not think to do anything to help relieve it. This can go on for days or weeks. I will develop strategies for managing these issues, practice them for a significant length of time, then one day be completely unaware of them, forget about them totally, only to rediscover them, sometimes months later.
Tricks of the Trade
When talking becomes too difficult and the situation is such that is important that I be articulate I will imagine a movie screen, project my words onto it and read them aloud. This happens quickly enough that it seems reasonably fluid to those who do not know me. I also appear articulate and well-spoken. But it reduces spontaneous interaction to the level of reading aloud. It reduces intimate communication to a lecture. And it is exhausting.
Alone to Concentrate
Home office, a corner of the guest bedroom, the keyboard on my lap, everything out in the open so I won't forget ... No view and no one to talk with ...
My two cats provide such a calming influence on my hectic mind. When I stop to pet them or just watch them, I realize how much we help each other. Being quiet by focusing just on them seems to hit "reset" in my brain and clears it.
A dog's life, they are often all that I can handle, understanding when you are tired, there for you when you are depressed.
Invisible in the Crowd
This man was deep asleep in the middle of a busy Toronto street. The world continued around him without disturbing him, without appearing to notice him. That is one thing I love about being in the city alone. I can walk around, speaking in my own language, stumbling from fatigue or vertigo, retracing my steps because I've lost my bearings (again), staring at a subway map or line of shops because I cannot understand where I am right now or where I want to go or how to get there, stopping to rest and regroup as often as needed (sometime every twenty or thirty steps) and no one notices, no one looks, no one judges me, no one knows that navigating the world is so difficult or that four years ago it was so easy.
Order!!! Just like a hotel room, Why, because, it is done by somebody else ...
What Matters Most
While I've lost all ability to use computers (which I used to install and train people on) as well as most all electronics, I am so happy that I can still read. No matter how difficult a day I’ve had I can relax at night and take myself away with a book. It doesn't matter whether I remember what I read or not.
Starting over, finding my abilities and being accepted for my DISabilities.
I Found Hope
Skyscraper. This building is like a giant tower to me. I found my brain injury support group here. I found Hope and the only others who truly can say; "I know how you feel." So many of us have had brain injuries but were never really diagnosed. Instead we were told; "the scar is healing nicely," "rest for a few days." We have left hospitals without any direction, any clues as to why we are very suddenly unable to function the way we did only yesterday. Here we learn to help each other.
Everybody Welcome, allowing me to help others with my abilities, thanked by many, and helping others find work even if I can't ...
Will work for food ... thanks for me come in many sizes and formats ...
Where Am I Going Now?
I'm back on that road of life again, tired-er and not so young any more. I wonder if I have hit another dead end in treatment. Recently I loosened my neck, but now I'm foggier. Even though I can't see what is beyond the turn in the road ahead, I will keep going and have faith that this road is going somewhere!
Hope Amidst the Tangled Web
Hope and desire for a full and active life in spite of all of the difficulties. Who knows what might be possible?
In spite of my changing difficulties, and complicated history and issues, I have, over the last 10 years:
- attended college science classes
- improved my Spanish language skills
- done paid work
- done volunteer work
- adopted a dog
- rescued cats
- raised my daughter
- organized yard sales
- dealt with family crises and deaths
- traveled alone to visit friends and family
- managed a home remodeling
- supported my husband in his goals
- built a raised bed garden with the help of my daughter's friends.
I credit much of this with remaining married and having a stable home life.
Recently, things have become more difficult, but I still have hope for a better future.
My son, the reason I continue on my journey ...
Hang in There
This is my mother, hanging from a tree in my back yard when she was in her late fifties. She suffered a major stroke when she was 22 years old. Prior to the stroke she played the piano, very well by all accounts, and had worked at John Hancock as a bookkeeper. She was bedridden for a long time and had to learn to walk and talk again. She never recovered her ability to play the piano, her math skills were seriously diminished and she had life-long memory and balance issues. At that time there was little understanding of the challenges she faced. She was met with impatience and ridicule by some of her family, dismissed by the medical profession. Yet she never gave up or felt sorry for herself, and until the day she died she had a piano in her house, and she was going to play it again some day.
My memories of her help me to hang in there and to not give up.
PhotoVoice was originally introduced to the Framingham "Amazing" Brain Injury Survivor Support Group in 2006 by Laura Lorenz, in conjunction with her doctoral studies at Brandeis University. These group members created a project entitled "Brain Injury X-Posed: The Survivor's View," also available for viewing on BrainLine. Many of the original project members assisted with this project.
More About PhotoVoice
The PhotoVoice II participants have provided written consent agreeing to have their photos and narratives posted on BrainLine.org.
PhotoVoice II Co-Facilitators:
Barbara Webster, Co-founder, ‘Amazing Brain Injury Survivor Support Group, Framingham, MA.; Co-facilitator, ‘Brain Injury X-Posed: The Survivor’s View’ September-November 2006
Laura Foley, Participant, Pilot Study ‘Facilitators and Barriers to Recovery from Traumatic Brain Injury: Through the Lens of Photovoice'; Co-facilitator, ‘Brain Injury X-Posed: The Survivor’s View’ September-November 2006
Photovoice II Participants
Want to do your own PhotoVoice project?
Here is the PhotoVoice Facilitator's Guide to get you started ...
©All rights reserved. Information contained on these pages may not be reproduced, copied, published, or redistributed without the written consent of Barbara Webster and Laura Foley. All requests will be subject to review and approval by the PhotoVoice Project II members and facilitators. Audio used with permission from Exit 245. Fix You performed by Exit 245. http://www.exit245.com