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Seeking the Gift  – (Bliss after a Brain Injury?)

by Linda W. Arms, dated November 4, 2014

For several years after my brain injury I felt a certain sense of peace and contentment.   Did any of you experience a similar thing?   I know brain injuries are all so different and I know it seems odd, but I feel there was a gift that came with the injury.   My brain could not handle much more than getting me through the day while in my home doing less than 5% of the things I used to do in my life.    Even though I was in a fog and knew I was just a small piece of my former self, I enjoyed a sense of bliss.

Prior to the accident I had a career, I had a social life, I had many interests.    My life was full of activity and I could never have enough to do.   I was very driven and always wanted perfection in what I did and the people around me.    It was difficult for me to relax.   I was doing yoga for several years up until the accident and it helped me find some calmness.   I read all sorts of self-help books to learn how to be more mindful and content but nothing worked.   Until I got hit on the head, that is.

I was turned “off” when the trauma occurred.    A door shut on what my life was.   My world shrank to a tiny portion of what it was.   My mind could only deal with things in the moment and only simple things.   I struggled to get through each day and often slept up to 14 hours a day.

I could only focus on a very small piece of what was before me.   Since my brain was no longer cluttered with a million other thoughts, I saw the world very simply.   My mind was often empty with no thoughts.   I learned to connect to the quietness and nurturing of nature.   I could let the beauty of what I was seeing or feeling into my relatively empty brain and really experience it.  I was living in the moment.   I did not worry.   I did not get angry (or display many other emotions).    I was at peace (sort of).

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 the brain injury, 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’s been almost 9 years since my brain injury and I am so much better.   My mind is now very active and I’m getting back to the many interests I had.   My peace and contentment have faded.   The bliss is usually not there.   But now, since the brain injury, I know what that peace and contentment feels like.   If I concentrate I can feel it for moments but it takes work.   I have to look for that gift of bliss.   I have to work on it.   I certainly know I  don’t want to lose it.   So now I’m back reading those self-help books and using other resources to help me keep the gift going.

I know my brain injury was a terrible thing for me and my family but I also found a silver lining that I will hold on to for the future and am grateful for.   Have any of you discovered a gift as a result of your injury?    Or maybe a new talent?

With peace….

 

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Music as a Healing Tool After Brain Injury

by Linda W. Arms

After a brain injury many of us have an assortment of issues with sounds and music.    For some of us, sound becomes intolerable.  Even the sound of water splashing when a car drives over wet pavement or the sound of birds tweeting can be overwhelming.    Music may be unbearable.     Others have no problem with this and can listen to just about anything.         I could not tolerate most sounds or most music.    I did find, however, that there was certain music or sounds that worked like “brain massage” for me.   Since then I have learned that there is actually a recognized health profession that provides music therapy for that purpose or to treat cognitive, sensory, and motor dysfunctions.

It seems that music as therapy is still in its early stages in the traditional medical world.   According to Michael H. Thaut,  Ph.D., and Gerald C. McIntosh,  M.D.,  “The role of music in therapy has gone through some dramatic shifts in the past 15 years, driven by new insights from research into music and brain function. These shifts have not been reflected in public awareness, though, or even among some professionals.”  Their entire article is available (as a PDF download) in the March 2010 article,  “How Music Helps to Heal the Injured Brain”, that appeared in the Dana Foundation’s publication, Cerebrum.

I’ve spent more time recently learning about music as therapy for brain injuries and for brain wellness in general.    Gabriella Giffords, participated in music therapy as part of her treatments after a brain injury caused by a gun shot.    According to Headway, the brain injury association of Great Britain, “music therapy is often used to aid improvement in multiple areas of brain function deficit and to improve quality of life, as well as facilitating physical healing…  Music therapy uses multiple approaches to focus on different problems. For instance rhythmic auditory stimulation is thought to aid movement, musical improvisation is thought to help emotional expression, while singing, oral motor and respiratory exercises are thought to assist speech. Even simply listening to music is thought to be a potential tool in the control of pain, which is notoriously problematic to treat in some cases.”    Additional information about music therapy can be found at American Music Therapy Association.

Amy Price PhD wrote in an article for the Traumatic Brain Injury Centers, “Neuroscience reports successful outcomes with specially engineered music therapy programs. Reports of music making a difference abound in science and classical literature. In Bible days musicians were sent ahead of Warriors to maintain morale and to set the climate of victory for battle. Recently there has been much emphasis given to the Mozart effect. In some studies music has been emphasized as being able to even enhance mathematical ability.” She also discusses the “Listening Program” which offers many benefits but also “serves as a relaxing way to restore cognitive reserve and reduce the fight or flight response created by learning anxiety.”

Not only is music recognized as a healing therapy for neurological disease or injury, but the AARP references an article by Kimberly Sena Moore, “The 12 Benefits of Music Therapy”, in their brain health resource section.

Personally, I experienced a healing experience when I listened to certain music.   I could not tolerate most any other music like rock, pop, jazz or Mozart.   It felt like someone was scratching a chalkboard when I had to listen to it.   It agitated me physically and mentally; I couldn’t think at all; and it fatigued me.    By accident,  I listened to some music on a meditation CD and found that it soothed me and restored that cognitive reserve.    If I felt sensory overload or was fatigued, I would often listen to my “special music” to settle my brain, like brain massage.    I actually found great benefits from these alternative approaches to healing with music.   One set of music that helped me were the songs on Deepak Chopra’s CD called Chakra Balancing: Mind, Body, And Soul Pt. 1.    Another was a CD by Leigh Ann Phillips, Dawn Mountain, was very soothing.    Since Leigh Ann has a Colorado connection, I decided to contact her and asked her to write an article that explains her approach to healing with music:   Body Song: Utilizing the Power of Sound, Music and Vibration for Brain Injury

Visit her web site where you can listen to free downloads of her music or purchase a CD:   www.leighannphillips.com

 

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The Year I Ran Away from Christmas

by Linda W. Arms, dated December 17, 2013

Sometimes it might be good to get back to the very basics and have a very simple holiday season, especially after a brain injury.   So many of us are challenged by all the events around the holidays, doing what everyone’s expected of us in years past.    Many of us have to endure the big family get-togethers, or busy holiday environments.   It is challenging because our brains are overwhelmed.

Seven years ago, in 2006,  I could not face Christmas at home as I did in my past.   In January of that year I had the accident that caused my TBI.   By December of that year, I had not made much progress in my recovery.   I could not face the Christmas decorations and products that I saw in stores already in October.   I would get tears in my eyes.   The difficulties I had just in being in a store became even worse because of the emotions that my brain was having to deal with.   I was OVERWHELMED  by the thought of putting up a tree, buying presents and doing any of the things I normally did in the past, including always having a big holiday get together  at my home.   I just couldn’t face it.   It just was not possible to be who I was before.   So I, my husband and daughter, ran away.

We went to a place I used to live growing up and that I have many fond memories of.  We went to Germany where Christmas is still celebrated in a much quieter style.   We stayed in a small village.   We bought a tiny tree about 12 inches tall with a few decorations already on it.    We enjoyed some very low-key events in this village that did not allow cars on many of its streets.   I could face Christmas here.   I did not have to try to be the person of my adult past.   I took many naps.  I could not count the money to pay for things.  I could not sort out many things I used to know about being there.  I leaned on my family.   Even with all these things in my way, it is still a wonderful memory that I have of this special time when we ran away from Christmas.

Here is a picture of our Christmas decorations, a tiny tree, 2 tiny reindeer, 2 candles and not much else.    We just enjoyed the peace and tranquility of where we were.   We enjoyed just our little immediate family being together.

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Today, seven years later, Christmas is still much, much simpler compared to “before the accident” but I don’t feel I have to run away.   I am still getting better in small doses.  I hope all of you are finding yourself better than last year. Have a Merry Christmas!  Happy Holidays!

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We Are Imperfect Customers

by Linda W. Arms

This is a different kind of post but wanted to share with you.   I’m sharing this with many customer service providers and groups via LinkedIn and other sites.   Here it is:

 

Our Imperfect Customers

How do you view your customers?    Are they like you?     Are they at the top of their game as you might be?    Probably not.     We have many imperfect customers who need special attention or, at least, an awareness of their challenges.   I used to always see my customers as having similar cognitive abilities as I and my co-workers.     After suffering a brain injury 8 years ago, my views have changed.    There are millions of people in the United States who have cognitive impairments so you might take a second look at who is your customer.

Those of us with cognitive impairments travel, shop, visit web sites, visit business offices, talk on the phone, drive …. you name it.   For many of us, we do it with great difficulty.   When we’re done, we are often exhausted.    For example, just doing a simple thing like grocery shopping was a tremendously difficult task.    There were days I would decide not to go, or I’d walk into the store and right back out again because it was too overwhelming;  other times I’d fill my cart with an item or two and then just leave it and go home; or after shopping, I’d go home and nap for 2 hours.

I spent over 25 years in a customer service role providing a variety of financial and information technology services to a wide range of customers.     As a manager of a help desk and other I.T. services, I was always looking at “who is my customer” and “what do they need”, trying always to improve their experience with our services.      I looked at our Help Desk customers in terms of their role in the organization and their different needs (engineers, administrators, highway maintenance workers, etc.).    I saw other sets of customers based on how they accessed the organization’s network (hard-wired, dial-in, VPN, etc. ) to work with various applications.     There were other types of customers also but I never considered the cognitive health of those we served.

There are many people like me whose cognitive abilities have been affected by trauma, disease or other causes.     I look fine and have since my accident but in the early years of my recovery my cognitive abilities were greatly affected.      Impaired cognitive abilities cause problems with awareness, perception, reasoning, ability to focus, memory, judgment and many other things.    Since every injured or diseased brain is different, there are many symptoms.    Our brains control everything in our bodies including the ability to walk, see, talk, comprehend written and/or spoken communications, perform math calculations, make decisions, balance, move our hands, hear, and the list goes on and on.    Most of us have problems with the speed at which our brains process anything.    The world moves and speaks way too fast for many of us.   Many people with an injured or diseased brain have problems with our visual systems.   Some of us have problems with sounds where we become overwhelmed by too many sounds, too much volume, and sensitivity to certain types of sounds.

How Many of Us Are Out Here in the United States?

  • 1,700,000 people suffer a traumatic brain injury each year
  • 800,000 people suffer a stroke each year
  • 70,000 people are diagnosed with a brain tumor each year
  • 30,000 people suffer a brain aneurysm each year
  • 5,000,000 people live with Alzheimer’s
  • There are many others with diseases that can affect cognition including Parkinson’s disease and Multiple Sclerosis
  • There are many who live with an acquired brain injury due to anoxia, bad drug interactions and other things that damage the brain
  • One in 5 veterans returning from the recent wars has a brain injury

The Challenge of Phone Calls

Interacting on phones can be very difficult for those with cognitive problems.    There are many steps that our brain needs to process when we make a call and we can easily become overwhelmed.   First we have to find the phone number and dial it.   Next, we have to comprehend the automated message or what the person on the other end is saying.   Our brain has to process the accents or dialects of the person.   We have to try to adjust to the speed of their speech.   Our brain has to work harder when the person is not speaking clearly or there are distractions we hear in the background.   We may not be able to keep up with the speed at which the information is coming to us.   Unfamiliar terminology throws us off.   Complex sentence structures overwhelm us.   Sarcasm and innuendo may not be understood.

The Overwhelm of Stores and Offices

Walking into a store or office can be overwhelming with a cognitive impairment.    We may be having problems with balance so as we walk in, see and process our relatively unfamiliar surroundings, we are immediately thrown off.   Our brain is working overtime to address just the balance issue.

Then, there are so many things in the establishment that we see and our brain has to process.    Fluorescent lighting is more difficult for our brains to process adding more to the overwhelm we are feeling.    Next we have to find what we are looking for, we have to scan objects, make decisions.

We have to interact with the office worker or clerk who may be speaking way too fast for us, or mumbling, or speaking with an accent.     Constant interruptions throw us off.   Everything becomes more difficult.   When someone asks us a question, it may take us a few moments to respond.   Many times, because we have not yet responded, the person asking the question will not pause for very long before asking again and trying a different approach.   Not good – we need some quiet moments to gather our thoughts and get them out our mouth.   Constant talking interferes with our ability to think.

The Get-Me-Out-of-Here Web Sites

Busy, busy web sites are everywhere.    People with injured and diseased brains have loads of issues with these web sites.    Remember many of us having problems processing visual input.   Our brains have to process the words we see and comprehend their meanings.   Our brains have to process the moving components on the page.    We have to process the choices we need to make from the menus.    We have to process every bit of it just like a computer processes every step of a routine.

Flashy sites with many graphics and moving components are everywhere.    It seems that the flashier, the better, but not for many for us.   We have problems with many types, sizes and colors of fonts covering the pages.   There are actually fonts that are easier for our brains to process but it is usually not a consideration when a web site is built.    Sites with dark or brightly colored backgrounds can be very difficult to look at and visually process.

My brain injury caused problems with visual processing.   I could not look at some sites without getting dizzy, almost nauseous.   I could not look for more than a few moments.   When I did stick with it, trying to find or understand the content was painful.   I could not think because of the visual effects of the web page.    There was one site I did visit fairly often but it had a moving graphic which I covered by taping paper to my screen.

As you can see, I am now a different kind of customer.    I look fine.   I’m much better than a few years ago but I still have problems, like with that young man yesterday who spoke too, too fast and actually made me feel dizzy and not see straight.   I had to ask him several times to repeat himself.    My brain just does not take in the information that quickly.

I now see that there is a whole different set of customers that I never considered that deserve some acknowledgement.   I am one of them.   We use your services.   We buy your products.  We visit your web sites.    We use your help desks.   We pay you money.    Perhaps you can learn more about those of us with cognitive impairments so you have more awareness of our needs.    There are so many of us, the imperfect customer.

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Frightened by My Own Shadow – A Reminder from My Injured Brain

by Linda W. Arms

One evening recently I was walking through my house and was frightened by my own shadow.    It was a big reminder of my earlier years after my brain injury when I was often frightened by things.    Often I think I could not process things quickly enough to understand what it was I was seeing.    Part of it also was that I was often hyper-vigilant as a result of PTSD (post-traumatic stress syndrome).    Whatever the cause, these responses of fear are a bit unnerving and zap some energy from my brain.   It even affects my physical energy for a few moments; there is a wave of physical weakness.

In the last weeks I’ve had many things on my mind and I am less aware of my surroundings.   A few days ago, I walked around the back of my house and saw the reflection from the water in a tiny pond that’s been there for the last 20 years.   When I first saw the reflection I was frightened because I didn’t know what it was.   It didn’t fit in with the rest of what I saw like grass, trees, and plants.   I don’t think it was a PTSD thing this time.    I think my brain could not process the visual input fast enough to tell me “it’s OK, it’s just light reflecting on the water”.

How many of you have had these experiences after your brain injury?   I remember some of my rather strange reactions that now I can even laugh about.    A couple of years after my accident, I moved my car out of the garage and parked it in the driveway.   I wanted to sweep the garage.    After sweeping for a few minutes, I looked up and saw a car in the driveway.   It frightened me because I thought “who is parking there, what do they want?”    A few moments later I realized it was my car that I had moved out there less than 10 minutes ago.

Another time I was walking through a home goods store and I suddenly saw something that really scared me and I even made some sound.   Again, a few moments later, I recognized that it was steam coming from a room humidifier that was on display.    It sounds crazy and I felt embarrassed by my reaction since there were other people around.    The incident caused me to have more difficulties getting through the store.   The scare zapped that fragile brain energy.

I’m not sure what causes these responses; only the brain fairy knows for sure.    I think in the earlier years, PTSD played a role in my moments of being frightened by something.    Today I think it’s mostly that my brain still can’t attend to too many things at once.      If my brain is busy thinking about a problem then it can’t also be processing a lot of visual input or other things it should be doing.   I have to say I’m rather disappointed that I have had this response so frequently in the last weeks but I realize it will get better.    It makes me realize I have to be extra careful doing things that require a lot of attention.   I have to remind myself to stop thinking about the problems, put them aside, and focus on what I have to do at the moment.

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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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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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