Brainstormers

On Wednesday I had to go to several places on the way to somewhere else.  Doing this always stresses me out but I figured it would be okay.  First, I took Sparky to the doggie day care.  On the door was a note saying the day care was going to move to a new location on March 31.  "Uh oh," I thought.  "Now I'm going to have to figure out how to get there."  This may not be a problem for most folks but it is a huge problem for me.

I followed my GPS to get to my next activity which was working in the vegetable garden at Grace Covenant Presbyterian Church.  I knew I was running late so I was surprised when no one was there.  I checked my Android and sure enough it had been cancelled due to the leader's unexpected emergency.  This worked out well for me since I was still concerned about finding the new doggie day care.  However, it did throw me off a bit due to my difficulties with flexibility

I went home and tried to find the new location on a map but I couldn't find it.  The person at the daycare said she would write the directions out for me and put it in my file to get later so I spent some time getting ready for my afternoon appointment.  I still wasn't used to this appointment's location so I felt my stress level go up.  I found the location just fine, but I worried way too much about it.  I was wasting what neurones I have left by doing this.  I need to find a way to stop my stress level from exploding especially since little things stress me out.

I then had to pick up some dog food at a place near by.  I had put the address in wrong in the GPS and I ended up in the wrong place.  I felt my emotions getting a bit out-or-control so I pulled over and took some deep breaths.  I knew I had someone else's address in the GPS who lived near by so I used that one instead.  I then found the pet store.  My next trip was to the daycare.  Again my GPS got me there just fine.   

It is so difficult explaining what happens when my spatial orientation gets challenged.  I think it's a little like being drunk.  I can't figure stuff out at all when I'm in that state. That night I had Brainstormers support group a support group for people who have some sort of brain injury, but I really didn't want to go.  I was supposed to unlock the door without setting off the fire alarm and I was nervous about that as well.  I sat quietly with my ear plugs in for a few minutes to "rest my brain" and  then I walked over.

In Brainstormers we always allow anyone who wishes to share, to do so.  I blabbered about my stressful day and my spatial orientation issues.  I didn't need any advice.  I only needed to get my feelings out to people who understood.  A person without a brain injury often has no idea what it feels like for a survivor to be lost.  For this reason, I often minimize my problem with directions because people just don't "get it."  I felt energized and relieved when I shared my struggles.

As a brain injury survivor, do people just not "get it?"  How do you deal with this?  Writing in my journal helps me a lot. Attending a group like "Brainstormers" where people know what I'm going through, is a godsend.  What helps for you?  See commenting instruction on the right above or contact me directly at puffer61@gmail.com  

"People-First" Language

You're probably wondering what a picture of the Y's pool has to do with "people-first" language.   Absolutely nothing.  I don't know how to put  pictures throughout my post but I can post them at the beginning so you'll have to wait until further down  when I talk about the pool!

This morning I emailed back and forth to a friend about the importance of "people-first" language when talking about people who have a disability.  The issue of children with disabilities came up in my Sunday School class yesterday so I went through my files to review what I have on disability. If you don't know what "people-first" language is, it's language that describes what a person HAS, and not what a person is.     

For example how many times have you said or heard someone else say "she's autistic" or  "she's confined to a wheelchair."  What I really hate is when someone calls me "brain damaged."  Yes, my brain is injured but I'm much more than my damaged brain!  This morning I swam laps at the Y , my dog Sparky is sitting on the sofa next to me and I'm going to help my husband do a presentation on brain injury next week for some folks involved in law enforcement in Haywood county.  Here's a link to Kathie Snow's suggestions for using people first language. http://www.disabilityisnatural.com/images/PDF/pflchart09.pdf  On that site you also may read a longer article about "people- first" language."

I didn't realize how important using this language is until I began using it myself. My whole concept of people with disabilities changed. I began to see them (or us, since TBI is a disability) totally differently.  No longer were they nameless or faceless because I was too busy focusing on their wheelchairs rather than them.  Yes it is true that people with disabilities often need help but everyone needs help in their lives.  It's often just magnified when a person has a disability. And the truth is, people with disabilities can often do much more than folks without disabilites think, if they would just be patient and give us the chance!

As usual, I've gotten involved in doing too many things.  They aren't stressful things and it's really not too much by the world's standards but my brain can't take as much now. One of the ways I deal with cognitive overload is by swimming hard laps at the Y.  It felt so good to get away from things and I now feel so much better.

Hunting through my disability files reminded me that I need to organize my papers again.  I used to function just fine when papers were piled on my desk but now it stresses me out.  I HAVE to organize my life better or I won't be able to function. So a little at a time, I will organize my office.  I really hate organizing things but if I split it up in short segments, it will be okay.

Have you heard of "people-first" language?  Have you tried using it for yourself and for others?  See upper right for commenting instructions or contact me directly at puffer61@gmail.com

Television

The picture on the lift is of my television. Actually it is a framed print but my television is behind it.  My husband Michael and I don't watch television but we have one so we can play DVDs or watch special programs.  He's really involved with bird watching and he found this print but he hasn't hung it yet. Since we rarely watch television, this seemed as good a place as any to put it. The funny part is, we kind of like it there because it hides the television!

What is it with our society and televisions?  They seem to be every where.  At one point the post office even had one so we'd have something to watch as we waited in line. Yesterday after swimming at the Y, I was getting dressed when someone turned on the television in the locker room.  It was some stupid daytime show and I wasn't interested in it at all.

My inability to filter out sound makes a blaring television really difficult for me.  People say they just like the background noise but I can't have background noise and still function.  My brain no longer allows me to divide my attention so its not just background noise to me.  I turned on my hair dryer and the woman promptly turned the volume up so she could hear it.  

When I get over stimulated, which is what was happening to me, I become tense and short tempered.  I can only remain in that environment for a short time.  If it is a setting where I can turn the television off, I do so.  If not, I remain in the environment for as little as possible.

If you have a brain injury, do noisy televisions bother you? What about other sorts of stimulation: noisy rooms, music at dinner, or anything else?  Feel free to comment here or email me directly at puffer61@gmail.com I'm in the process of switching this blog to word press since commenting is much easier there. I had hoped brain injury survivors could share their challenges here but commenting is too difficult.        

Lent

Lent is my favorite season of the church year.  This year I'm using Ed Hays The Lenten Labyrinth: Daily Reflections for the Journey of Lent.  Each day is another twist and turn as we walk through the Labyrinth of Lent.  Today he tells a parable for us to ponder on our journey.

Once there was a Jewish rabbi who had a servant named Jacob.  They would often ride together in a horse-drawn cart.

The rabbi was extremely fond of his wonderful horse.  It was a beautiful, brown, lively animal.  Once, when they were

traveling through Russia, the rabbi decided to spend the night at an inn in a small town.  As was the custom, Jacob, the

servant, spent the night at the stable with the horse.  Into the stable that night came a horse trader with a big bottle of

vodka.  He made friends with Jacob, and they drank and drank until the early hours of the morning, when the horse

trader bought the rabb8's horse for a song.  The next morning the servant woke up horrified at what he had done.  He

didn't know what to do next for at any moment the rabbi would arrive.  So he ran over, picked up the cart, placed himself

between the cart poles and began munching on the straw.  The rabbi came out of the inn and said, "what is this?  Where

is my horse?"

Jacob said "Horse?  I'm your horse!"  The rabbi said, "You must be insane!  Jacob, have you lost your mind?  What

has happened to my horse?"  Jacob responded, "Rabbi, don't get angry.  I must make a confession to you.  Many years

ago,I failed.  I slipped and fell.  I had sex with a woman who wasn't my wife.  What's really bad, Rabbi is that I enjoyed it

and I wasn't sorry.  God punished me by making me a horse - your horse!  For all these years I've 

pulled your cart around and today my penance is over!  Blessed be God!"

The poor rabbi who was devout said, "Well, all things are possible with God.  This is amazing!"  While the rabbi

was swept off his feet by this miraculous event, there was a practical problem.  How could they continue their journey

without a horse?  So the rabbi had Jacob wait there and went to the market.  When he came to the horse traders, he

found munching on some hay.  He went up and whispered in the horse's ear, "Goodness sake, Jacob, so soon again?"

Hays writes, "Along with flexibility, creativity and humor are essential for anyone in the maze.  Each of these provisions for the way (was) addressed in (this) parable." 

His words remind me of our support group Brainstormers and how we spend time sharing our struggles with humor. We understand each other and it is good to laugh together.  It's difficult sharing my challenges with someone who doesn't have a brain injury because it often appears as if I'm putting myself down which I'm not. When one has a brain injury, flexibility, creativity and humor is crucial.  I do hope God will give me widsom as I travel through this Lenten Labyrinth.

God's Wisdom

I read a quote from Susan B. Anthony today. "I distrust those people who know so well what God wants them to do, because I notice it always coincides with their own desires."  I really hope that I am following what God wants me to do and not only what I want.

It bothers me that I can no longer work as a minister but I still try to serve God as I can.  I used to be able to keep so much information in my head!  I was always running from one meeting to another and trying to be involved in many things.  Neurons in my brain were destroyed when I had my car accident and the neurons I have left, must work harder so being busy like that is no longer possible.

In fact things that most folks don't even think about are difficult for me. Luncheons, meetings and driving somewhere new involves quite a bit of my brain function.  I have to attend to conversations while filtering out background noise and lights which really is more complicated than I realized. For this reason, I don't do meetings or luncheons unless I believe they are absolutely necessary.    

Now it is a major thing when I go somewhere new.  This past week, there was a luncheon at a country club I really wanted to attend.  My husband Michael is really good with directions and I often rely on him for these. I know it drives him crazy when I ask him for directions all the time so I've tried to depend on my GPS or even ask other people. I also  keep a folder with all my directions in it so I check this as well. 

However sometimes my own worries get in the way of my good sense. That's what happened this week.  To make it worse, Michael had a stressful week so he didn't have much patience.  I was frantically trying to find a map (It doesn't take much for me to get frantic anymore!) and so I asked him.  He became angry at me and then I lost it.  I slammed our front door as I went outside to his car to find it. I slammed the car door after I located it and for good measure, I slammed the door coming in. I can laugh at it now but it really was childish.  I have discovered that I seem to do more childish things now than before sustaining my brain injury.

While overwhelming, I really feel the things I did this week were what God wanted me to do. I know it pushed my limits and I plan to take it easy for a few days.  I pray that God will give me the wisdom to know if my thoughts are true or if I'm really fulfilling my own desires. 

HOPE to HOME

A year ago, I began serving on a team of people from three different faith communities helping a formerly homeless man named Bill, as he transitioned into housing. The picture on the left was taken at our final dinner of the year. (Two other members were not able to attend.) HOPE to HOME is a new program here in Asheville which is based on a more national model and I served on one of the first two pilot teams here.  The program has grown to the point where there are now ten teams with the hope it will grow even larger.

One of the main reasons folks become homeless is because they lack a support system.  If I lost my disability benefits and my husband died, I would definitely be in trouble.  However, I have family and friends who would help me so I wouldn't have to live on the street. Many homeless folks do not have this type of support.  Homeward Bound, an agency here in Asheville, works to help people get into permanent housing.  The HOPE to HOME program supports their work by expanding on what they already do.

When I first got involved in the program, I wasn't sure how much help I'd be.  My spatial orientation issues made taking Bill places difficult for me unless he is able to direct me.  I'm not much of a cook and my dog is pretty exuberant (I'm working on teaching him not to jump all over people when they come over) so inviting him over for dinner wasn't an option.  I had hoped he would be able to work in the garden  with me at GCPC since he is a gardener but his health difficulties prevented this.  Due to these challenges, I was not able to support him as much as I'd hoped.

Yes, I did help Bill this year and it gave me a human face to put on poverty. During our last dinner, the director of the program led us in a debriefing exercise. We each were asked to select one questions from a hat.  Some of these questions were: What did you learn that you didn't know before? Has your view on homelessness changed?  What did HOPE to HOME teach you about yourself? What's the greatest accomplishment of the past year?

I grew from this experience as I think we all did in different ways.  Although every member of the group was not a Christian, the  Christian image of the body of Christ comes to mind.  I didn't take Bill to many of his appointments and I didn't help mend his clothes.  Yet I was part of the body.  I offered my caring and sensitive attitude and this was enough.

Prior to my brain injury, perhaps I would have been able to keep track of all Bill's doctor's appointments or take him where he needed to go without having to use a GPS. (Well, maybe not.  I've never had a good sense of direction) Yet I was part of a team where each person had different gifts.  We all worked together like the body of Christ.  This is something I am still trying to learn.  I can't do everything.  In fact I may be able to do only a little part now but every part is important in the body of Christ.  Even if it's just the big toe.   

GPS

There was an article in the Feb. 5 issue of the New York Times about using GPS devices.

http://www.nytimes.com/2012/02/05/opinion/sunday/is-gps-all-in-our-head.html?_r=1&scp=1&sq=Is%20GPS%20All%20in%20Our%20Heads?%20Julia%20Frankenstein&st=cse  Julia Frankenstein  is a psychologist and begins the article by suggesting that folks probably ask themselves,  "What did we ever do before GPS?"   She suggests we stop using them for when  we do, we don't work our brains.  She writes, "The psychologist Eleanor A. Maguire and her colleagues at University College London found that spatial experience actually changes brain structures.  As taxi drivers learned the spatial layout of London,... the areas of the brain integrating spatial memories - increased."

 On many of my driving excursions, I use a GPS.  Since I have no spatial orientation at all, this helps me.  However, the way I learn new information is through "errorless learning." ( Jan. 18, 2011) Prior to owning a GPS, I always wrote down directions and used them every time. I used them less and less until I felt confident.  Then I stopped using them completely. .  Every time I drive from the the doggie daycare to the Y, I use my GPS but yesterday I decided not to use it.  I got there just fine but I did have to pay attention to my surroundings instead of listening to a voice telling me where to turn. I was working the neurons in my brain which is what must be done to strengthen them.

This commentary reminded me to, as my husband says ,"be mindful of the tension between using compensatory strategies versus exercising our brains to learn new info."  This is a tough balance for me especially with spatial orientation issues.  Prior to my TBI, my sense-of-direction was poor and  I was always lost.  However, the feeling is different now.  I become upset and enter into a trance-like state.  I've  learned to take a few deep breaths and stop to get myself together but it is a horrible feeling.  I almost always have written directions when I use the GPS.  However , this article reminded me that I need to push myself away from using the GPS.