TBI Healing Art

How will I recover from a Traumatic Brain Injury?
I ask that question all the time since my injury over ten years ago and haven’t found an answer. Physical therapy and exercise have made some improvement, but it hasn’t resolved the nerve damage.
My health needs are always there, it’s like swatting mosquitoes at the lake shore.
 

I made this brain injury blog so I could share my life of challenges with other TBI survivors, their family and friends. People who can identify with me, understand the struggles and find confirmation of themselves as I have when reading personal brain injury stories. I’m always surprised to hear that other people are going through the same thing as me.
 

In addition to this blog, you will find my brain injury story, the twenty-six “Healing Images” I finished a few years after my injury and photographs I made before my injury, listed in the “Sight Menu” above.
 

I’d like to write positive blog posts about my TBI recovery, but that didn’t happen, I believe few people have had that experience. What I will write a realistic, practical blog describing the unpleasant difficulties and the few pleasant moments while healing from a traumatic brain injury.
My recovery has been slow and tedious, this is typical unfortunately, happily we are different and our brain injuries are different.
 

The first thing I want to do is list the basic symptoms of a traumatic brain injury. These may be obvious, but we’re not always aware of them and there are many. They my not apply to everyone, but to some extent they have all made my life difficult.
 

• Fatigue
• Difficulties Concentrating
• Slow Responses
• Loss of Coordination
• Dizziness
• Agitation
• Poor Judgement
• Speech Difficulties

 

Remember that the following blog posts were written by a TBI survivor who is learning as he writes the blogs. The writing is simple, they convey the difficulties I have thinking and expressing my thoughts. I often repeat myself since the same complication may occur with different symptoms. I continue to revise the blog posts so they are easier to read, more descriptive. My most difficult struggles are described in the blogs posts at the top, there are more listed in the “Blog Archives”.

Recovery indicates loss. Beyond the physical, mental and emotional health, traumatic brain injury survivors may loose their income, independence, security, self esteem and much more. It may take years if not decades to regain what has been lost. Some things may never be recovered.
 

When I regained my memory in the hospital rehabilitation center, I assumed I would be rehabilitated to my previous health before the injury. That didn’t happen. For several years I thought my health would come back naturally with exercise, it didn’t. However, if I continue working I will become better despite what others say about having a limited time for recovery. The bottom line: I need to work for my health or I won’t heal.
 

When I regained my memory in the Hospital Rehabilitation Center, I assumed I would be restored to my health before the injury. That didn’t happen.
 
I then spent six months working with physical, occupational and speech therapists at Outpatient Rehabilitation. I was still optimistic that I could return to my previous health in a few years, so I kept the illustrated exercise instructions to do at home. Finally, I understood that my injury would take a long time to heal as the doctors said when I began to exercise at the community college for the next 2½ years.
 
I still thought my health would come back naturally if I made the effort to improve, but the progress was small and slow, I saw little change. The bottom line is that I needed to work for my health or I wouldn’t heal.
 
I was looking for a way to measure my improvement compared to the expected recovery of a TBI and learned that there is nothing to compare my progress to but myself. Since my judgement is poor and I can’t measure my improvement over time, I just made an effort to heal and worked hard, I did what I could. After many years, I still want to be healthy and active again, but I realize I may never achieve this.
 

I learned that my recovery from a TBI is not only long term, it’s never ending.
 
I learned several things from the exercise class and volunteering my therapists advised me to do.
 
If I get out of the house and be active, I wouldn’t worry about my difficulties.
 
If I was active, I would improve my strength and endurance.
 
I learned it was healthy for me to be surrounded by people who would talk about everyday events, even if I couldn’t take part in them.
I would listen, remain silent and do my work. I thought of myself as being in a bubble, where I could see what was happening around me, but people see me. I didn’t need to talk, which would have been a distraction, causing me to become confused at what I was doing. During these times I would pretend I was healthy, until I returned home and could relax, not worry if I stumbled or bumped against the wall.
 
I learned that anything I did would be an improvement, so I could do more. Doing one more repetition of an exercise, reading one more page of a book, remaining in a noisy crowd for a few minutes longer.
It’s important to give myself credit for making the effort, even if I didn’t reach my goals.
 
For me, consistency is more important then the amount done. I believe spending 2½ years at the community college gym was helpful, not only for the exercise, but for creating a daily routine and being around people, this is why I still volunteer, I also feel appreciated for the work I do.
 
My recovery comes in small amounts very slowly and I always run into my limitations. It’s important to make my exercises manageable yet challenging. There are days when I’m sore, when I’m tired, when I have other things I need to do. These days break my routine and it’s difficult to return to the routine, then there are times when I’m focused on my exercises and I want to do nothing else.

Understanding a TBI is difficult since the location and severity of every traumatic brain injury is unique.
A general description of a traumatic brain injury is an insult to the brain resulting in cognitive, physical or emotional impairment. While this description is accurate, it does not give you an understanding of the medicine or person related to the brain injury.
 

 

I had a closed head injury with a focal point at the left basal ganglia. There was damage to the brain stem and I required a ventilator for respiratory failure. This will give you no understanding of a brain injury, because as I said earlier every brain injury is different.
 
It’s called a brain injury, but the damage is to the central nervous system and the nerves spread throughout the body. It can affect anything, our ability to think, walk, speak or breath. It may become better or worse as we age, depending on our efforts to improve.
 
Having a traumatic brain injury is like going to outer space, you won’t know what it’s like until it happens, or unless you’ve had a stroke.
 

Just as brain injuries are unique, so are people. I can only offer insight to myself.
After my brain injury, while in the hospital recovering, I remember thinking I didn’t want to be disabled. I didn’t think people who were disabled were respected as they should be in our society. I wanted respect, I didn’t want to be looked down on or taken advantage of because I have a brain injury.
I found I felt inferior to other people and being alone was a safe quiet place while I got better. It seems as if I fell into my trap of thinking that disabled people were not respected.
Being disrespected and thought little of is still in the back of my mind, but being around people when I go to the gym or volunteer has helped. I find that people will accept you and I don’t need to share myself.
 
I don’t share my story since I have no memory of the accident, not because my communication skills are poor or because I feel inferior since my brain injury. Also, I choose not to share my story since I believe those who haven’t had a TBI wouldn’t understand. I hate explaining myself, I feel like I’m justifying myself for my inadequacies brought about by my brain injury, besides no one wants to talk about their negative experiences.
 
An article called “Lost & Found: What Brain Injury Survivors Want You to Know” shares the basic issues TBI survivors deal with. It is written by Barbara J. Webster, Lash & Associates. As a TBI survivor, it seems like common sense information that everyone should know.
 
I would like to be understood, but I don’t know if there is a way for the TBI survivor to inform other people about their injury with ease or for people to inquire without being intrusive. What I can do is relate the issues that I deal with and I assume other TBI survivors deal with similar issues.
 
What I want people to understand is the continuous effort needed to maintain my health. I’m always questioning if I have done enough to be healthy, and what more could I do, but maybe that’s just me.
 
I want people to know that everything takes more concentration from before the injury, yes everything. From walking to eating, from cleaning to writing this post. Some things will become better, small improvements will come very slowly after years of repetition.
 
I want people to know that most of my attempts of reaching a goal are not fulfilled, this leads to poor self-esteem. My ambitions are greater then my abilities.
 
I want people to understand that everything depletes my concentration and adds to my daily fatigue. This includes the morning routine, riding the bus and preparing meals.
 
I want people to understand that I can quickly loose my temper when I’m tired and have no concentration to retain it. I’ve learned to avoid conflicts by walking away and finding a quiet place to rest. Similar to loosing my temper, I easily become sad and my eyes water. My emotions have become more extreme since my injury.
 
I want people to know that crowds are bothersome because too much activity takes place and I can’t pay attention to all of it, I become insecure and self defensive.
 
My point is that a traumatic brain injury is not an inconvenience that will pass in a few months or years. The injury is life altering, requiring the survivor to endure daily obstacles the remainder of their life.

Time management is about being efficient with our time by planning and organizing our activities so we can complete tasks quicker and have time for other things. There are several steps to managing time:
 

These time management steps are also cognitive skills called Executive Functions, when damaged by a brain injury they are termed Executive Dysfunction.
 

While regaining my memory in the hospital, I was told I had a brain injury. I didn’t know what a brain injury was, what it meant and I wondered what it would look like. The purpose of making the Healing Images was to learn about brain injuries, how it would affect me and what happened when the three weeks I lost my memory.
 

I didn’t use any guidance to make the goals of my Healing Images realistic. There was no need to have a finish date and I was unaware of how much time it took planning and organizing the content on the images.
There is an acronym called SMART that helps maintain our goals. It says that our goals should be:
 

Specific – My project wasn’t well defined.
Measurable – I made no limit of images or text to work with.
Achievable – It took longer than I thought to solve my problems.
Relevant – The project was relevant to my life.
Time-related – I didn’t have any time limits.
 
If I tried to applied the SMART acronym to the Healing Images, it would have reduced my time to complete the project and limited the content to tell my story, I wouldn’t have tried to make the project. Instead, What happened was that I benefited from years doing art therapy without knowing it.
 

My incentive for making the Healing Images was the same as my goal. I wanted to understand how the brain injury would affect my life, why the injury happened and what was my health when I lost my memory. I lost many things I enjoyed with the injury, I was motivated not to loose the ability to make graphic design. I’m often motivated by the excitement of thinking what I could do, only to realize I don’t have the ability to achieve it. It’s good to ask other people if your goal is practicable.
 

Perceiving ourselves as other people do and understanding our limitations is personal insight. My self awareness is poor. I still believe I capable of doing what I did before my injury, even after repeated failure. I’m not always aware of how much activity that could make me sore and yet improve my health. the consequence of becoming sore is that I need to rest longer and miss other activities.
 

I’m learning that since I process information slowly, I’m taking longer to think and understand, therefore, it will take me longer to complete my goals.
If my personal insight was accurate and I understood that the healing images would take 4 years to finish, I’m sure I wouldn’t have started. If I knew my limitations, I wouldn’t have done half the things that improved my health.
 

I have difficulty starting activities, especially if the activity is new, like when I’m writing this article. I have notes, printed information and I know the subject to write about, but there is no clear idea regarding what I should write, even after pondering for several minutes and reading the notes and printed information a few times.
 
When projects become too large too grasp, I need to stop, go back and re-due / start over from where I last could understood. That happened often when making this website. I also have problems stopping and moving on to another activity when I’m making progress. My troubles with starting and stopping are one reason it took three years to finish my website.
 

Now that I’ve changed subjects I don’t have any difficulty writing my thoughts, maybe since I’m writing about the past, I don’t know.
I don’t recall having any problems starting the healing Images, but I had lots of time to think about it, and it took I me time to gather the content (images and notes) to place on the images.
 

having a consistent technique or procedure of doing things will make activities become easier and quicker with repetition. It has worked for me when I have scheduled appointments like volunteering exercising class. It becomes difficult when I try to exercise by myself. Routine is difficult to establish if a person has problems initiating new tasks.
 

The process of deciding what, how and why to carry out the design of the Healing Images is what slowed me down. I needed to re-learn the design elements and principles and how to apply them, things I forgot or was unsure of since my brain injury. I was uncertain of everything right after my brain injury.
 

again my goal was to understand what happened, what a brain injury is and how it will affect me. after wondering how best to tell my story I decided to tell it chronologically, the complications, rehabilitation and personal struggles.
 

I meant to explain and show how all parts of my life were affected by the brain injury. The doctor and therapist notes showed improvement, The exercise images represented rehabilitation, background images represented the road of recovery, the block letters represented starting over and the road signs represented personal losses.
 

Arranging our thoughts, activities and possessions with similar ideas, events and items will save time. Organizing keeps track of things so we know where they are and can return to them when needed.
 

When I planned and organized the Healing Images, events were arranged by week, I placed the MRI scans with the related diagnostic reports and My journal notes were placed the week I wrote them.
 

Daily fatigue can be physical, mental and psychological. Fatigue is a continuous weariness resulting with decreased energy, motivation and concentration. Many things will cause fatigue including but not limited to anemia, diabetes and depression, sleep disorders can also cause fatigue. I will talk about fatigue related to my brain injury. (Read what you can do about fatigue.)
 

 
Fatigue is different than sleepiness or drowsiness, which is caused by not sleeping enough. We often deprive ourselves of sleep for work, recreation and education. Medications and sleeping disorders can also cause a lack of sleep. (Read about the difference between fatigue and sleepiness.)
 
Research has found that fatigue can result from damaged nerves acquired in a traumatic brain injury. Nerves create pathways by transmitting electrical signals from the neuron body through the axon to other nerves. A forceful blow to the head producing a traumatic brain injury can sever the axons causing the nerves to die followed by swelling. (Watch a video about diffuse axonal injury.) When the nerves die new neuron-pathways need to be made to communicate the electrical signals, requiring more energy. This extra effort causes fatigue similar to re-learning how to walk, write and coordination skills in rehabilitation. Fatigue slows the mental processing of information and physical response time of the traumatic brain injury survivor. (Read how neurofatigue affects the body.)
 
After my injury when I cleaned, dressed and ate in the morning, I would walk to the bus stop. As I waited for the bus I noticed I couldn’t focus my eyes on distant road signs. Other mornings I would become dizzy when getting off the bus. Before I started my day I would need more rest.
My body seems to fall apart in the evenings when I use a lot of energy during the day. My right leg becomes heavy and I need to swing it from the hip when I walk. These are the signs of spasticity.
Of all the issues associated with a traumatic brain injury, fatigue is the most common and annoying.

Balance, dizziness and coordination are troublesome for various reasons. And this blog post is difficult to write since I don’t know the all the answers to my questions.
Fatigue plays a role in all my difficulties, it seems I can never get enough sleep or rest to concentrate on everything and I’ll be repeating this throughout the blog.
 

Poor balance has occurred since my right knee was weakened in my brain injury accident and I don’t know why, I always thought it was caused by nerve damage. My doctors have said balance is an inner ear problem, yet I don’t sense anything wrong with my ears. The only hearing issue I have is that I can’t filter out sounds and the noises become a distraction, but I understand this to be an attention problem.
 

I constantly need to shift my weight from between legs, place my left knee behind my right knee for support when I stand still or lean against an object to keep my stability, while I’m wearing my knee brace and carrying my cane. I found an article on the internet about TBI balance problems. It talks about the inner ear and the basal ganglia in the brain and its role with providing balance.
A simple description is that the basal ganglia maintain movement and counter movement to make motions smooth, it’s responsible for processing other information as well. (Read about the basal ganglia.) The basal ganglia happens to be the location of my brain injury.
 

The exercise I find helpful for improving my balance is standing in a doorway holding on to the walls or having some other support while standing on one leg for several seconds, then switching legs. Over time I can increase my time. It’s a thrill when I feel that I’m getting better.
 

Dizziness is more confusing than the imbalance I experience. There were times when I couldn’t focus my eyes on distant objects, times when I’d become light headed and there were other times I’d feel as if I were in a boat rocking back and forth. I’d have difficulty judging the distance to the ground/ floor so I could stabilize myself with my healthy leg. I need to sit down, close my eyes and rest until I’m stable enough to get home. (Read about dizziness.)
I don’t know if this is a problem caused by the inner ear, the basal ganglia or spasticity.
 

Spasticity is when muscles are constantly tightened, inhibiting relaxation and making coordination difficult if not impossible.(Read about spasticity and TBI.)
Spasticity with a brain injury is when the brain stem is damaged. This can happen when the head rebounds from striking a blunt object, disrupting communication in the nerves between the brain and the muscles. Spasticity happens when I’m tired or fatigued and is apparent when I bend my right arm at the elbow and make a fist with my hand. My legs become extended and toes clenched, When I walk I swing my leg from the hip, occasionally my knee will shake when I stand, but I’m not sure if spasticity is the cause.
This reinforces what my neurologist told me about the tingling sensation in my thighs, it’s a result of my brain stem being harmed when my head hit the pavement in the accident.
I find stretching my legs and rubbing arnica gel on my thighs will reduce the tingling sensation.

Exercise is an activity to develop the body and mind, a task to be practiced for improving a skill. Everyone can always improve the physical and mental activities of their life with effort.
 
The physical and mental effects of a traumatic brain injury are overwhelming, yet better health with exercise can be rewarding, freeing a person from their limitations.
 

 
After rehabilitation at the hospital, I exercised for more than two years at the community college, stopping because I was pleased with my progress, and continued to exercise at home.
A few years later my physical therapist recommended I return to the gym to improve strength, it wasn’t coming back naturally like I thought it would.
 
I once spent a couple of months focused on exercises to improving my balance and saw some progress. Then I focused on strength exercises for some time and when I returned to working on my balance I didn’t do well. It’s as if my body and mind forgot the progress I made.
 
I find that consistency is more important than the amount of time or energy I spend exercising. One of the benefits of the gym is that you can do several exercises in one visit. Unfortunately, when I’m improving with an exercise I want to do more and it’s difficult to think of other exercises.
 
The first thing I need for any exercise is a good night sleep so I can focus on the workout and shut out the noise around me. To help me sleep I wear ear plugs, take a melatonin tablet, use a spray on my tongue called rescue sleep made by Bach® (a homeopathic), sometimes I use an eye cover and/ or eat half a banana and I always have a white noise machine playing the sound of the ocean on a beach.
 
Sleep will reduce the distractive tingling sensation I feel in my thighs caused by nerve damage, which will allow me to concentrate better. I also rub arnica (a homeopathic) on my hamstrings (back of thigh) every day.
 
Good sleep will delay the instability of my knee, which will result with hyperextension (the knee snaps backwards), This becomes worse in the evening when I’m tired. I also wear a knee brace and carry a cane to keep myself steady when I leave the house.
 
With good sleep I avoid the stiffness and poor coordination caused by spasticity. Spasticity is damage to the central nervous system resulting in the uncontrolled tightening of muscles, it becomes difficult to walk and be agile. I believe stretching my legs and arms everyday has improved the flexibility.
 
Be safe, use supports that will hold your weight (towel racks are not secure). I found I could do more exercises if I support myself with something. I hold on to a handicap railing when I do squats, I rest my wrist on a hand rail and slide it along when I do heel-toe walking and I hold on to the door frame when I balance on one foot.

Sensory Overload was the original subject of this article, I wanted to share my difficulties with sensitive hearing since my brain injury. When I researched why and how a person obtains sensitive hearing and/or other sensory problems, I learned my attention deficits were the silent culprit.
 

There are four types of attention: sustained attention, alternating attention, divided attention and selective attention.
Sustained attention is keeping your focus for a long time. This skill is used when listening to a lecture. When I’m rested I can stay focused for an hour conversation with someone, but I become tired and can’t retain all that was said.
 
Alternating attention is quickly changing focus and concentration from one activity to another. This happens when someone calls your name or when the phone rings. Since I’m slow at processing information, I’m slow at changing my attention. If I’m doing something when the phone rings, I usually let it ring and call back if they’ve left a message.
 
Divided attention is the ability to do two activities at once, often called multi-tasking. Talking on the phone while driving is an example. People overrate their ability to have divided attention since believe they’re accomplishing more. I’m not capable of dividing my attention. I have difficulty thinking of one activity before I move on to the next.
 
Selective attention is choosing and concentrating on one stimuli or object among several while not being distracted by other stimuli/objects. Staying focused on writing while hearing the refrigerator humming is an example. Selective attention causes my auditory overload problem that didn’t exist before my brain injury, It interrupts my concentration and thinking. (This website will clarify attention skills following a TBI). After the interruption I need to review what I was doing and start again with a clear mind. It becomes frustrating, annoying and tiring. It takes time to find the answer.
 

In Summary:

Selective attention filters the stimuli so we aren’t overwhelmed and allows us to concentrate on a selected object.
The stimuli filter decreases the volume of the unattended stimuli so they don’t distract from concentration of the selected stimuli. (Read this website about selective attention studies.)
We have a limited capacity to process sensory information and our capacity becomes more limited after a brain injury.

Solitude after a Traumatic Brain Injury can be healthy. For me solitude and seclusion were caused by the fear of failure. I have poor balance and coordination, understanding what people were saying took longer than usual and having to explain what happened was difficult since I have no memory of the accident. My interactions with people always seemed awkward, I felt inadequate about myself. Solitude and seclusion were an escape, an avoidance, a comfort. (Don’t misunderstand me, I enjoy conversation but it tires me out so I can’t do other things.) This works for me, but I’m an introvert, it will be different for other people.
What kept me going was the exercise classes to improve my health, the volunteering to stay active and pursuing my interests by making the “Healing Images”.

I have distinguished the words that describe the time we spend by ourselves. Solitude is being alone, seclusion is shutting people out, isolation is separation and loneliness is a feeling.
 

Solitude is healthy. Being alone provides rest for our daily lives so we can restore energy. Solitude gives us the opportunity to pay attention to ourselves. We have the time to examine and discover our personal strengths, we won’t need other peoples approval when we are secure with ourselves. Solitude improves our relationships, when we attend to our own needs we can better meet other people’s needs and make stronger connections with people. Solitude clears our mind, we can improve concentration to solve problems and find creative solutions, we will think of new ideas more often by ourselves then in groups. We can be alone anywhere, shopping, the theater, the park, but our ability to concentrate will be determined by the distractions. Read about the healthy aspects of solitude.
 

While solitude refers to being alone, seclusion indicates shutting people out or being hidden. Groups will find secluded locations to study, worship, relax and connect with each other.
 

Alone, seclusion gives us the ability to clear our mind and concentrate or the risks of disconnection when we isolate. Read more about the pros and cons of being alone.
 

Isolation is separation and there are three types of isolation: physical, social and emotional. Read more about the different types of isolation.
 

Physical isolation is separation by distance. a person living in the country, away from people is one example.

Social isolation is separation between a person and their community. A person will have difficulty communicating and relating with their partner and routine interactions will become superficial, there are no meaningful connections in their life.

Emotional isolation is separation between a person and their feelings. In addition to the social isolation behaviors, a person will keep to themselves. They are closed to feedback and become shutdown.
 

Loneliness is a feeling of not having intimacy, It can happen anytime, anywhere. Read about finding answers to loneliness.
 

I’m often become lonely, everyone is lonely at times. There are times I would rather deal with the solitude and loneliness than the fatigue caused by listening to people or the confusion when not understanding others. Everything involves concentration and I have little of it.
People who feel different and inadequate, people who don’t fit in feel lonely most often, a person with a brain injury, like myself for example.
Research has shown that when a person has a goal beyond themselves they can avoid loneliness. Fortunately, my therapists set me up with exercise classes and volunteering when the therapy appointments ended so I could evade the loneliness.

After my brain injury I needed to learn what I could do physically and cognitively, what I loss. My life was going to be different and I didn’t know what to expect. I needed time to re-evaluate myself, I needed time and quiet to understand my psyche, myself.

I would think these feelings and behaviors are common with other TBI survivors. My suggestion would be to respect their need for solitude, see that they are active/ involved with others and look for signs of isolation and loneliness.

Traumatic Brain Injury endurance is limited as a result of concentration causing fatigue. That’s my experience and with regards to writing this blog, my endurance is fading, I need a rest.
 

Learning to maintain this website/ blog and learning about my brain injury symptoms has worn me out.
Unfortunately, children with head injuries can struggle with concentration and fatigue with their studies and often considered not to be making an effort to learn (read more about learning and with brain injury).
 
In the past, my routine has been to focus my attention on making this website for around eight months then I needed to rest for a few months, etc, etc. I’m entering the rest cycle now.
It’s common that traumatic brain injury survivors don’t finish projects (read about attention and concentration), so I’m grateful for being able to return to working with this website/ blog.
 
Another issue I struggle with is multi-tasking, also known as (divided attention), I always seem to make one activity a priority, I don’t have the concentration to do two things at once.
I need to spend more time exercising for my physical and mental health. I’ll continue to write, but I don’t know how often I’ll post an article.