Living with Brain Injury

Those of you with TBI – what are your pet peeves when you are out and about in the world?  These are the things that get in your way of functioning well or cause your brain to go on overload pretty quickly.   One thing that really interferes with my ability to shop is the music that every store seems to have going.   It is just another thing my poor brain has to process as I find my way around the stores to locate what I need and select what I want.

In the early years after my TBI, I avoided stores as much as possible and often walked in and right back out, taking a nap when I got myself back home.  Even today, I often struggle to tune out the sound so I can think.  I still find myself just leaving the store and sometimes leaving behind the items I already put in my shopping cart.   I don’t want to have to work my brain so hard and it just doesn’t feel good.

Oh, and how about those nice sales people who try to help you and keep talking at you while you’re trying to think  about what it is you are trying to do.   I have frequently told sales people I just need some time to think by myself.   My husband has even intervened a few times when he sees me struggling with my need to think quietly about my shopping decision while the clerk keeps going with suggestions and questions.

Why is it that many of our other body parts get so much attention from ourselves and the medical profession?   We get checkups, eliminate “bad” foods, exercise, and do other things to keep those parts in good working order as we age.   Most of us pay little attention to keeping our brain healthy.   Our brain is essential to our being alive and defining who we are.   We don’t spend a lot of time being  “brain aware”.      Whether you are a person with TBI or you do not have an injured brain, you need to take action to maintain and improve brain health.   I have collected a number of articles that give good advice on brain health for everyone.   Find out more on my page  Brain Health.

Everyday can be challenging for someone with TBI but the holidays bring even more challenges.   We have to do a lot of extra things such as buying gifts, putting up decorations, and interacting with more people.   We have to maneuver around very busy stores and all the holiday hubbub on the roads and parking lots.   The holidays can also be an emotional time because we might think back to our past selves when we could do so much more.

TBI survivors and caregivers should take extra care during this time for rest, finding quiet spaces and doing less of what is expected during the holidays.   Those of us with TBI probably are much more settled and can enjoy this time better if we don’t have ALL those decorations all around us.   They are overwhelming for our poor brains to process.

You also need to learn to say no to some things.   I’ve turned down large family get-togethers in these past years because of all the challenges of interacting, a lot of noise and making your way through the groups of people.   And then, of course, we have to remember that when we over-do-it one day we have to pay for it the next.

Find ways to enjoy the holidays with quieter times and less “stuff” that ends up all around us.   Keep it simple and you’ll enjoy it more.

Noise – there was so much noise after my brain injury.   Just about everything became noise that I could not tolerate.   I could not listen to music, birds, the splashing sound of cars going through puddles, talking, TV,  and so much more that is all around us all the time.   After a few months I discovered that I could listen to and was actually soothed by listening to just the music on Deepak Chopra’s CD called Chakra Balancing: Mind, Body, And Soul Pt. 1.    I would listen to it on my iPod to keep the other sounds away.      It would sooth my jittery mind that often felt like I had butterflies or a wave motion going on in it.   Almost always I would fall asleep.   It was almost like a drug to calm me.   I’ve listened to it hundreds of times in the last years.    Gradually over the last 7 years my tolerance to sound has improved greatly.   I rarely spend time with pillows on my head or use my special earplugs to keep out background sound.

I came across a blog recently about what not to say to people with brain injuries and I thought “how appropriate”.     Recovering from TBI is a challenge in SO MANY ways and its disheartening to hear certain comments from people.    Most people just don’t “get it”.     You look fine, you can speak, you can walk…   they just don’t know how hard it might be to speak and walk!     When someone told me “but you look fine”, it was like them telling me “there is nothing wrong with you”.    Or how about, “it’s what happens when you get older” – WHAT!   – did I age so much in a 24 hour period after I was hit on the head and I’ve been steadily “un-aging” for the last 7 years?   Then there was “it’s like a broken leg, you have to wait until it’s healed to run again” –  REALLY!   a broken brain is like a broken leg?

Here is what Dr. Rowland had to say in her blog 9 things NOT to say to someone with a brain injury

After my brain injury in 2006, my husband and I looked for answers on how to recover from a brain injury.    There was not a lot of good information about TBI and treatment options.     As we looked for answers, even among my medical providers, we realized that TBI treatment and recovery was a challenge.

I am hopeful, however, that things are changing since 1 out of 5 veterans returned from Iraq and Afghanistan with a brain injury, and since the NFL and hockey teams are being challenged by players who have experienced brain injuries.     Because of them, we are seeing more TBI research and more awareness campaigns.   The US military has FINALLY acknowledged TBI and PTSD as a problem among returning veterans.   The sporting world is recognizing the dangers their players face when heads are injured.   But even with this new attention and awareness, brain injury is way behind in research and funding.   The TBI awareness campaigns just don’t get the attention compared with heart disease, breast cancer and other diseases.

According to the Centers for Disease Control and Prevention an estimated 1.7 million people sustain a TBI annually.

Of them:

• 52,000 die,
• 275,000 are hospitalized, and
• 1.365 million, nearly 80%, are treated and released from an emergency department.
• TBI is a contributing factor to a third (30.5%) of all injury-related deaths in the United States.
• About 75% of TBIs that occur each year are concussions or other forms of mild traumatic brain injury (MTBI).
• Direct medical costs and indirect costs of TBI, such as lost productivity, totaled an estimated $60 billion in the United States in 2000.

People still do not understand a brain injury until it happens to them or someone close to them.    People often believe someone with a brain injury is faking it.    Much more needs to be done for TBI.    March is TBI awareness month but comes and goes with little notice by most.   This needs to change.

In January 2006, I was between two major milestones in my life.  I just turned 50 and was preparing to retire from my high stress job.  I was looking forward to retirement from being an information technology manager and ready to venture off in new directions.  I felt I was at my peak professionally and mentally.   I felt very healthy and strong.  I felt good about my personal life, my family, and my friends.  I was very driven, always wanting to be out and about.  I had prepared myself well and was ready to reach for new challenges.   I enjoyed hiking, skiing, sailing, diving and other activities which I felt I had never been better at than when I turned 50.   I felt so good and so much was going on and being planned on.  It was great!

On January 15, 2006, I faced an abrupt end to what I was.    I was suddenly toppled from what I thought to be my personal peak into a deep hole by a freak accident that left me a victim of traumatic brain injury.   That is when I became Mina Kitty.  I became someone who was always tired, walking around the house slowly, laying down a lot in different places in the house, taking naps, rarely leaving the house.    It was like being a house cat.  I felt like a house cat.   Before the accident, my husband sometimes called me Willie (short for Wilhelmine, my middle name).    But now Willie no longer fit.    My nickname was transformed to Mina, and Kitty was added for the house cat characteristics I now had.   I became Mina Kitty, birthdate – January 15, 2006.   I actually do “celebrate” it…..

I’ve come to you because my brain is injured.   I come to you because you specialize in services to brain injured people.   Why then do you have an office environment that causes me “pain”?   Music from the radio that was not tuned in  and filled with static.   Waiting rooms with way too much bright light!   Waiting rooms filled with tons of stuff (plants, knickknacks, and more stuff).   Confusing hallways to get to your provider’s office. Glass walls that don’t keep the chaos out.   Web sites that overwhelm with too much – words, fonts, moving components.    Why do you have office staff that talks way too fast, especially on the phone?   Why does your office staff  not call me back and, if they do,don’t try to simplify what it is I’m asking about?  Why don’t you take better care of me?