Resources & Inspiration for Life with Brain Injury

cognitiveTag Archives

The Brain Fairy is Always Lurking

by Linda W. Arms

After a brain injury, every day brings constant reminders that our brain is not working well.    For many of us, everything becomes a challenge.    Every movement we make, speaking, seeing, reading, counting, driving, cooking, cleaning, walking, hearing, thinking and so much more becomes difficult.    Nothing  feels normal.   With these challenges, we become even more fatigued and less able to do the things we are trying to do.   It becomes a vicious cycle that we cannot move out of.    Slowly as we get better, we start experiencing a “new normal”.

I think our “new normal” is a combination of us forgetting how it used to be, and that we have actually gotten better.     We also adapt by changing things around us and how we do things.   We stop doing certain things because it just isn’t possible or isn’t that important for us to spend the energy on.    We become much more functional and after a while we don’t think about our brain injury every single day.     Sometimes it takes years to get to this point.

Many of us don’t want our brain injury to define us so it is important not to constantly think of ourselves as “damaged” or that we can’t do something.    Sometimes we have to redefine who we are and what our life is to be.   Maybe we can’t do that job we had before.    Maybe we can’t climb mountains.   But there are other new and different things we can do.

Living with our “new normal” is fine and works most of the time.    Sometimes, however, the brain fairy comes back for a visit.   The brain fairy that causes all that trouble but also heals things in our heads is always lurking in the background.    Sometimes that visit brings back many symptoms we thought we’ve overcome.      A frightening experience like two large dogs barking, running and jumping at you causes you to have that sense of visual discombobulation or you feel unbalanced; your mind goes blank and the fog returns or something else just isn’t feeling normal again.

Sometimes, the brain fairy returns for a longer visit such as when you are faced with big life disturbances such as family problems, money problems, illness or other things that weigh heavily on you.    The stress, the emotions, and the mental work required to deal with these things is more than your injured brain can deal with.   Symptoms return, fatigue sets in, everything becomes much more difficult.   It is a time to step back and take care of yourself.    It is time to ask for help.    Remember the early months or years after your brain injury when you did nothing much other than try to heal.   You rested more, people helped you more, you did less, you put less things on your “to do” list, you didn’t do some things you used to do.

For whatever reason the brain fairy returns to you, remember it will pass.   Sometimes it is a short visit.   Sometimes you don’t know when it will end.   But remember that eventually it will get better again.   Pace yourself.    Be patient and good to yourself in the meantime.

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Taking Back Control After a Brain Injury

by Linda W. Arms – March 2013

A brain injury often results in us losing control of our lives. Often, because we need the help and oversight, we have to depend on others. We need help with simple, daily living activities such as getting to an appointment because we can’t drive. We need help with simple decision-making. We need help understanding what we are reading or hearing. We need the help of someone else’s brain for so much!

Our loved ones or caretakers start taking over our lives through no fault of their own. We have to lean on them for so much. They make many or all of our decisions, sometimes even for very simple matters. They answer someone’s question for us. They tell us we have to eat or have to rest or stop doing whatever it is we’re doing because they see it’s too much for us or it’s not safe to continue. We want them to do these things for us because it’s too much work or impossible to do by ourselves.

After my brain injury I felt like I instantly turned into an 85-year-old woman and a young child at the same time. I could not move fast and was unsteady. I had little strength. I needed someone to hold my hand to walk across the street, to tell me to stop what I was doing, to take a nap… I wanted someone to comprehend what was being said to me and help me respond.

As I improved, I slowly took over many things people were doing for me. I was not always successful, so I needed their help again. My capabilities were also inconsistent depending on my level of fatigue. My helpers were often standing by, watching and ready to step in. They let me try on my own. It was like being a young child who is learning new things in life. I was VERY grateful for all the help!!! Often I thought, “please, make this decision for me, it’s just too hard for me”.

In recent years, however, as I improved, I needed less and less help. It is sometimes a little difficult taking back that control over your life. Those you counted on became too used to taking over for you when you could not do something. As you improve it is often a bit challenging and even confrontational when you start taking charge of your life again. After all, you’re a big girl (or boy) now and you can do it by yourself.

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Cooking is a Cognitive Challenge

by Linda W. Arms

Many of us used to think that cooking was a fairly simple task.   I thought so before my brain injury.   Even though I was very busy with a demanding job and other things in my life, I enjoyed cooking.   I was never one to follow recipes.   I preferred getting ideas from meals I ate in restaurants and looking in food magazines.   I liked to create my own things and made many complex dishes for my family and guests.

I don’t really care to cook that much anymore.    It was one the things I immediately stopped doing after my brain injury because I didn’t have the physical or cognitive energy.    My family took care of cooking for me, including the shopping and the cleaning up.   I just couldn’t do it.    I was very weak at the beginning.    My motor skills were off.    Stirring and other rotating hand motions made me nauseous and dizzy.    My vision had a number of problems that weren’t yet fully diagnosed.   The tasks involved in trying to cook a small meal were too overwhelming for my brain to process easily.

I just didn’t cook.   It was just too hard and it made me feel worse.   I tried many times to at least help by doing a few tasks but often that was too much for me.   We just don’t realize how much is happening when we cook something.    You have to decide what ingredients and dishes you need.   You need to wash and cut things up.   You need to figure out the order and timing of things.  You need to use motor and visual skills as you use utensils and do other cooking tasks.  You need to use memory.    You need to process things and sounds that are around you in the kitchen; you need to tune those things out and focus on what you’re doing.   I’m sure that’s just a small part of it.   But you get the idea.   Lots of stuff happening for our injured brain to process.

Over the last years I slowly expanded my cooking activities.   I would do easy things at first.   Someone in my family would help by cutting things up for me.   Someone was also always standing by to save me.   They also were quiet while I cooked.   They knew that any talking; or having the TV or radio on would cause too many problems for me.   I had to have silence and no distractions while I cooked.   S..l..o..w..l..y  over the last seven years, I am doing more cooking and even talk at the same time!   It sounds silly but that’s how it is.   I expect some of you can relate.

I don’t really enjoy cooking that much anymore.   I still have to approach it differently than I did before.   It’s a lot more work.   I usually always burn one part of the meal.   It’s kind of a joke these days.    I’d like to also thank my husband for stepping in and cooking many of our dinners these days.   He’s become a wonderful cook!

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mid section view of a woman cutting vegetables

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Getting Things Done with a Brain Injury

by Linda W. Arms

I do things in a more linear way these days.    I can successfully manage one thing at a time.   It is because I have a brain injury that I can no longer multi-task in the ways I did before my injury.    Since my injury, my capabilities have improved tremendously but I am still far from where I used to be where I juggled multiple information technology projects;  managed a group of 16 or more that was responsible for several aspects of technology in a large organization; taught classes after work; and managed all of life’s other aspects at the same time.    I could easily jump from one topic to another and then back again.   Those days are gone.

These days I can recognize several things that need to be taken care of, like a birthday coming up, having someone over for dinner, taking care of a personal business matter and a lot of other small matters.   The problem is that I can’t work with a multiple of these things at the same time without difficulty and feeling overwhelmed.

What do I do?   I look at my list of “to-do’s” and decide which needs my attention first.    It might be just a small piece like “I have to order this book so it is here for my husband’s birthday”.    I take care of ordering it and “put away” the other birthday tasks for a later date and not even think about it.   Then I focus on accomplishing just that one other thing that I’ve identified as being the priority.    In this way, I don’t have that feeling of overwhelm so I can give all my brain energy to one topic.   I am more successful when I focus on one thing until I complete it because I don’t have to re-think things.   In my opinion re-thinking takes up a lot of cognitive energy.

I also do not place a lot on my “to-do” list because I know I can’t be successful.   I identify what is most important.   There are things I just don’t do – they are no longer important in my life.   I ask others for help.   I remove distractions from around me so I can focus on what it is I am doing.   I take “brain time-outs” sometimes for a whole day if I overdid it for a few days.   Once you use up a lot of your cognitive energy, it is almost impossible to recover if you keep going and doing whatever used it up.   You have to rest.

This blog is something on my “to-do” list these days but honestly it is low priority.   I enjoy it and really love hearing from many of you but sometimes I have to put it aside like I have for the last week because I have to tend to other things that have become a priority.   I do realize, however, that I can do more as each year goes by.    My daily planner is essential and keeps track of things for my brain.   What tips do you have for those of us who have problems multi-tasking or getting easily overwhelmed by just a short list of things to do?

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Why is Eating So Much Work?

by Linda W. Arms, Feb. 7, 2013

After a brain injury, everything seems to take so much energy out of you.   One of our most basic needs, nourishing ourselves, can be a lot of work.   Obviously cooking involves a lot of cognitive activities but even eating can be challenging.    After my TBI, it was difficult to sit at a table and eat.   I would often eat part of my meal and be so exhausted that I would have to lie down.

Think about everything that is going on at the table while you’re eating, especially if others are with you.   Another person is moving their hands to pick up the fork, cutting with a knife, moving food to their mouth, reaching for a dish of food…   They are picking up glasses to drink.   They talk.   Maybe a radio or TV is on in the background.   There are plates, glasses, napkins, and other things on the table and all around you.   All of this is being processing by your injured brain.    On top of all this, you have to feed yourself.   All those little actions that have to be handled by your brain.   Can you see why it’s exhausting?

I had visual problems after my brain injury that took a few years to be resolved.   It was very uncomfortable for me to sit at the table and eat. I wasn’t particularly hungry and then adding the stimulation of being at the table was too much for me. Even my own hand movements of eating and cutting the food were too much visual stimulation.   I would sometimes feel nauseous from the hand movements.    For some reason, clear glassware on the table caused a problem for me also.   I think my brain couldn’t quite figure it out, looking through it or whatever but the more there was on the table the more difficult it was for me to look at it.

I also had a sensitivity to sound and light.   Think of the sounds at the table that your brain has to process.   Bright lights around you add to the level of stimulation.   I used custom fitted musician earplugs to muffle the sounds around me but, unfortunately, having them in my ears while eating did not work very well.   The sound of me chewing was very loud which was disturbing.   The chewing sounds would also drown out anything someone was saying to me.     I knew I had to eat but the experience was not comfortable or enjoyable.   I’d eat a bit and then take a rest.     This is a lot for an injured brain to deal with just being at home where your surroundings are familiar, imagine the additional burden when you are out at a restaurant!   Just remember it gets better as your brain heals.   Know your limitations, and try to control your environment to keep things that trigger your symptoms from taking over.

 

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The Brain Fairy At Work

by Linda W. Arms

After a brain injury there are many strange sensations in our head and body.    For me, the sensations began a few hours after my injury and have slowly decreased in intensity and frequency over the last years.   Sometimes, lying awake at night, I would notice these and be afraid because I felt that no one really knew what was going on up there in my brain.   Science still refers to the brain as the “last frontier”.    I felt I was in a strange, mystifying state where that “brain fairy” was doing its work that others did not understand.

I expect everyone with a brain injury has different sensations.   I’ve noticed from reading others’ experiences there seem to be some similarities.   How many of you felt the same things I did?

  • Flip-flops or butterflies in my head – it actually felt like there was a movement up there, sort of like waves, very strange.   It was not pleasant.  Sometimes very intense. I couldn’t do much of anything when this was going on.   The first hours after I got up in the morning were especially bad.   Sometimes I would just sit in a comfortable chair with my head back and let the “brain fairy” do her dance.   I could not stop it.   Nothing would stop it.
  • Bursts of light – during the many hours each day where I would be sleeping – before falling asleep or waking, there would be little bursts of light when my eyes were closed.   I’m not really sure if I saw these with my eyes or if it was just a sensation in my brain.   Again, very strange, very mysterious.   Almost like shooting stars.
  • Pains in my head – obviously my head hurt from the physical trauma but there were odd shots of pain in different places in my head.   Very quick.
  • Tingling, prickling and numbness – this was a rather obnoxious sensation I had in different parts of my body.   I would feel it in my face, my head, my hands and feet.
  • Slideshow at super speed – this is strange, I know.   As I woke, with my eyes still closed, I would see a bunch of unrelated pictures that would speed through my head.   It was like someone was running a slideshow in my brain but very fast.   I could not really focus on the picture but I could tell it was a person, or a scene or something.   I mentioned this to many of my medical providers.   Finally, one doctor said it was something called hypnagogic hallucinations.
  • Creepy crawlies – when I was very tired, usually in the evening, my entire being felt totally discombobulated, everything throughout my body felt unsynchronized.   It was a physical and mental sensation.  It was a disturbing sensation that was made worse by sounds and light.  There would be a throbbing in different parts of my body that was not in the same rhythm as the throbbing in another part of my body at the same time. I wanted to curl up into a tight little ball and be thrown down a dark hole were nothing could disturb me.

Thank goodness these things have faded.   They still come back sometimes but not to the degree they where in the early years.   Does any of this sound familiar to you?

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K.I.S.S. (Keep It Simple Sweetie) – Part 2

by Linda W. Arms

Understanding  spoken communications is often difficult with an injured brain.   In a conversation, there is SO MUCH happening that you don’t think about.   The brain that is receiving the words/sentences is very busy as it processes all the pieces that make up the spoken communication.    There is the volume, speed and clarity of the words as I mentioned in my last post.   Here are a few more tips for family, friends and caregivers to help us with injured brains understand things more easily:

  1. Don’t use a lot of complexity in your conversation – long sentences, big words, new words, acronyms add to the complexity that needs to be deciphered by our brain.   An injured brain often has to strain to work through this complexity making it fatiguing and sometimes frustrating for the person trying to understand what is said.
  2. Don’t use double negatives – I have a real problem with this.   When someone says “Isn’t it true that you did not eat breakfast?”   My brain gets tangled on unraveling the two NOT’s and I don’t know how to answer.   This is just one example but people often speak with several negatives in a sentence which confuses the heck out of me and my brain is stumbling about trying figure it out.   Fatiguing….  Frustrating….
  3. Try to tone down the emotion – Adding a strong emotion to what is being said is another part that needs to be processed by the brain.   For me, negative emotions that the speaker is conveying in their conversation is a burden for my brain even when the emotion is not directed at me.   Anger or frustration in the conversation is another piece that our brains have to do something with as we are trying to understand what is being said to us.  It gets in the way of easily understanding.

And there is more to say about all this… next time.   Just remember, K.I.S.S. (keep it simple, sweetie)  if you want the person with the injured brain to be more successful in understanding what is being said, and you don’t want to create unnecessary fatigue or frustration.

Part III of K.I.S.S. – “Keep It Simple Sweetie”

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K.I.S.S. – (Keep It Simple Sweetie) – Part 1

by Linda W. Arms

This is for family, friends, caregivers and the many people who are part of providing medical services to those with brain injuries.    First of all, thank you for your care and concern during our journeys from our brain injury event to where we find ourselves today.   It is not easy for you either since you probably have to do a lot more because of things we aren’t able to do.   You also have to have an extreme amount of patience.   It is not an easy job.   We want you to understand us but sometimes it hard to know ourselves.

Comprehending what is said to us is a big problem for many of us with a brain injury.   The words coming at us often don’t sink in for a variety of reasons.   This makes it difficult for us to understand what is being said and it can be very fatiguing and frustrating.   Once we’re “brain fatigued” everything else is difficult until we have a chance to recover.

Here are some very friendly reminders to make communication easier for us:

  1. Speak slowly – my injured brain has to hear the words and also process them.   My brain can’t keep up with what’s coming at me if words are coming too fast.  I have to make my brain work a lot harder to keep up with a fast pace (sometimes I don’t even try).
  2. Speak clearly – it takes a lot more brain processing to hear the words when someone is mumbling or speaking towards a different direction so sound is not coming straight at us.   Someone with a brain injury may have to spend a lot of brain energy just to hear the sounds let alone process what the words mean.
  3. Get to the point more directly without meandering into other side topics  – The injured brain may have problems remembering what was said 60 seconds ago especially if unfamiliar topics are being discussed.   We are trying to keep track of the conversation but if there is a roundabout presentation of the topic of discussion we will often get lost.   I have found myself trying to remember what seems to be important points but the speaker is going off in other directions.   My poor brain is working hard just to remember those points as other words are coming at me that don’t seem to be part of the main topic.

Simple

Find out more about making communicating easier in my other posts:

Part II of K.I.S.S. – “Keep It Simple Sweetie”

Part III of K.I.S.S. – “Keep It Simple Sweetie”

 

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One Thing At a Time – Being More Successful with an Injured Brain

by Linda W. Arms

A while back, I came across an article “10 Steps to Mindfulness” by Leo Babauto.   As I was reading it I realized it had many good tips for people in general but especially those with a brain injury.

After a brain injury, many things are difficult or impossible to do.   Instead of constantly attempting to do things as you did before and fail, realize that it’s best to focus on one thing at a time.   You will be more successful and be less frustrated.   After my TBI, I really did not have much choice but to approach everything slowly and methodically.   My brain did not allow me to do any more than that.    I realized that having 1 or 2 tasks (besides getting up, dressing, showering and eating) was often more than enough in one day.

Even today, I have to often step back and remove the multiple tasks I have before me.   I select a few that are most important and concentrate on doing them well.   When I have too much on my plate, I become easily overwhelmed, fatigued, clumsy and cannot move forward successfully.   Here are the first two steps from Babauto’s article:

  1. “Do one thing at a time. Single-task, don’t multi-task. When you’re pouring water, just pour water. When you’re eating, just eat. When you’re bathing, just bathe. Don’t try to knock off a few tasks while eating or bathing or driving. Zen proverb: “When walking, walk. When eating, eat.””
  2. “Do it slowly and deliberately. You can do one task at a time, but also rush that task. Instead, take your time, and move slowly. Make your actions deliberate, not rushed and random. It takes practice, but it helps you focus on the task.”

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It’s Your Choice

January 6, 2013

I just read an inspiring article I want to share with you.   First, I’d like to highlight this quote in the article.   It is from Brad Snyder, who was blinded in Afghanistan. “Choice — that word means a lot here,” said Snyder, 28, a former Navy bomb-disposal expert. “‘Choice’ puts everything on a level playing field. Each of us faces a plethora of daily choices — when to get up, what to eat for breakfast, what to say to your family before leaving for work. You can choose to be positive. Or you can choose to be a victim. “You can choose to move forward with grace. Or you can choose to succumb to negativity.” Please read the rest of the article, it is really good:   Alive Day – MSNBC.com

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New Beginnings

by Linda W. Arms

As we begin the new year, many of us think about our lives, the year ahead and make resolutions to improve.   I think many of us with TBI have another “new beginning” each year that causes us to contemplate our lives. That time of year is different for each of us, and it is the date of our accidents that caused our TBI. It’s probably a date that brings us sadness and a little more grieving for the person we used to be, but it’s also a date to consider the progress we have made in getting better and other things in our lives that are positive.

The door on who I was closed seven years ago on January 15. Although a lot of “me” came back, I’m also very different. That difference has brought several positive traits that I am grateful for. I’m more patient and not driven to perfection. I’m much more grateful for my family and friends who stayed in touch even when I couldn’t. I’m much more forgiving of imperfections in people around me. I have much more compassion for others.   I appreciate the simple things in life, I’ve learned to stop and smell the flowers because my brain doesn’t want to be filled with all those details it was capable of handling before. I’m happy……. and sometimes frustrated.  Sometimes I get frustrated when I can’t do things like I used to but those times are becoming less each year.

I’m grateful for the progress I’ve made in the last seven years and know that I’ll see more improvement this year, even if they are small things.  I’d like to share this posting from Facebook with you as you start the new year.   I received this by accident from someone I don’t know but I related to it because of my seasons of life associated with TBI. I do not know who the creator of this is so I can not give credit but thank you to whoever you are.   Click here to view Seasons of Life – THEN CLICK ON THE ARROW IN THE LOWER LEFT OF THE PICTURE TO START THE VIDEO.  Note that there are multiple pictures in the video, it moves through the pictures slowly so some of us with brain injuries can read it.

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Brain Injury and the Vision System

by Linda W. Arms

Brain injuries often cause many problems with our vision system.   I’m not talking about a problem with the eye itself but about the work our brain does to allow us to see and interpret what we see.   Problems with our vision system cause or worsen many of the symptoms associated with brain injury such as fatigue, cognitive problems, balance problems, and coordination.    In all the testing and rehab efforts, our vision system is often overlooked and as a result, we continue to struggle to improve.   In my case, the problems with my vision system started being addressed after about 6 months but the final rehab effort did not occur until my 4th year into rehab.    I had a number of problems with my vision and I suspect they had some of the biggest impacts on the difficulties I had in functioning.

Damage to our visual systems cause problems such as:

  • Difficulty with eye movements
  • Double vision
  • Sensitivity to light
  • Reduction of visual field
  • Problems when shifting gaze from one thing to another
  • Difficulty focusing
  • Problems reading and comprehending what is read
  • Visual mid-line shift
  • Sensitivity to visually busy environments
  • Problems with walking and balance

If you are having problems like this, your brain must work extra hard to get you through your tasks which then causes even more fatigue.   Frequently a full comprehensive vision exam is not performed on people after a TBI and these problems are not identified.   I know I had to keep pushing to get my “eyes fixed”.   I went to 3 different specialists who each worked with different parts of my vision problems.    Today I only have the “discombobulated” sensation occasionally thanks to the various therapies.    I still cannot look through binoculars without my head wanting to shake.    I’m not perfect but a heck of a lot better than I was.

Testing for these vision problems is not routine after a TBI.    It is important to find someone who specializes in diagnosing and treating vision problems that result from a brain injury.    The military recently added these specialized tests in their polytrauma centers for TBI, however, testing is not the usual protocol for most TBI patients who do not end up in one of these types of centers.

The Center for Neuro Skills provides a good overview of visual problems associated with TBI:

http://www.neuroskills.com/brain-injury/post-trauma-vision-syndrome-1.php

http://www.neuroskills.com/brain-injury/post-trauma-vision-syndrome-2.php

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The Gift

A while back,  I received an inspiring message from a friend.   It was a YouTube video by Louie Schwartzberg, an award-winning cinematographer and innovator in the world of time-lapse, nature, aerial and “slice-of-life” photography.   After watching the video it reminded me of “the gift” I was given as a result of my TBI.   I’ve shared a link to this video later in this post.

Nearly 7 years ago I suffered a traumatic brain injury.   Like most of you, I’ve had many problems as a result of the injury.   The accident took away things I can never get back.  On a personal basis many things are gone.  Professionally I lost everything in terms of income and my capabilities. The accident took away things I can never get back.   I keep improving, even now, but I don’t want to lose “the gift”.

Prior to the accident I could never have enough to do.    I was very driven and always wanted perfection in what I did and the people around me.    On January 15, 2006 my world changed but I was also given a gift that I am grateful for.    With much despair after the accident I worked hard to get better and I learned many things that are important.

For the first few years my thinking capabilities were very difficult.   I could describe it as cotton balls muffling everything in my brain, muffling my thinking; or as muddiness where the thick murkiness slowed everything in my head.    My view of the world became very telescopic.   I could only focus on a very small piece of what was before me.   Since my brain was now not cluttered with a million other thoughts, I saw the world very simply and was able to connect to the quietness and beauty of nature.   I could let the beauty of what I was seeing or feeling into my relatively empty brain and really experience it.

I learned to see and feel the quiet and healing of nature.   I watched butterflies, stared at flowers, felt the breeze, smelled the soil in my garden.   I enjoyed very simple things.   I saw and experienced many things most people around us are not capable of in our busy world.   I watched the blur of activity of other people racing around in their lives and I thought “they are not really living”.    They do not see our world.   I could not see or feel our world before my accident.   Although, in rare times, I stopped for a split second and saw the glimpse of a beautiful flower it was a fleeting, shallow experience.

As a result of TBI, I can truly feel and appreciate the beauty and comfort of nature.   I love viewing the nature around me, inhaling it, feeling it throughout me.   I love the silence of nature and am comforted by it.    I can sit and enjoy the sky, the birds or flowers or just feel myself exist and feel connected to the world around me.

It is a wonderful experience that I can now have as a result of my TBI.    I hope all of you can find a gift that you were given as a result of TBI and be grateful for it.

Let me share with you the video that inspired me to write post.   Once you are redirected to YouTube you will need to click on the video to start it.

http://tedxtalks.ted.com/video/TEDxSF-Louie-Schwartzberg-Grati