"Overwhelming"

The title for Mark Ramsey's sermon at Grace Covenant Presbyterian Church yesterday morning was "overwhelming." It definitely got my attention since I have such a problem with being overwhelmed.  This is really an issue for folks who are brain injury survivors. Over stimulation, cognitive overload, and mental fatigue are just a few words which describe our feeling of being overwhelmed.

This picture was printed in the bulletin and I loved the Call to Worship.  I enter the sanctuary from behind the organ to avoid the overwhelming situation when I join the processional with the choir so I usually miss this part of the service.  However, for some reason yesterday I stood back on the stairs where I could hear it.

O God, open us to the powerful winds of your Spirit.
Open our eyes to the wonders of your creation.
Open our senses to the smells of new life.
Open our ears to the words of justice and truth.
Open our mouths to the taste of freedom and love.
Open our arms to the embrace of peace.

I am trying to be open to the winds of God's Spirit but it is hard. In the past I thought being open to the Spirit meant getting involved in everything that came my way. This didn't work.  It only stressed me out and I wasn't good to anyone especially to God!  So when I moved to Asheville, I regrouped and didn't get involved in much of anything.  What happened?  I got bored.

Now I'm trying to balance things out. I'm beginning to think that folks stay busy because they are afraid to be seized by the Spirit.  It's easier to say "yes" to everything than it is to discern if something is what God is calling us to do.  I think this saying "yes" allows us to feel important.  But we miss out on so much of God's world when we do this!

 I'll never forget the hours I spent watching those baby robins hatch and grow until they were big enough to leave the nest. (see 5/13/12 post) I stopped what I had to do and watched. I opened my arms to God's embrace.

Mark said something in his sermon yesterday that made sense to me. "If we are going to do anything about the problems that beset us, we have to confront the problems honestly.  During an age of overwhelmedness, however, it is difficult to look at things honestly."

Sixteen years after sustaining my brain injury, I'm finally looking at things honestly.  I'm no longer pretending I remember someone's name when I don't, even after hearing it 125 times!  I'm no longer expecting to know my way when I'm going somewhere for the first time.  In fact,  I don't even expect to know my way after going there hundreds of times.  It doesn't mean I'm stupid.  It only means my brain was injured.  It's who I am now and I can't be someone I'm not, just to fit in.

I loved the way Mark referred to this past Sunday which was the  "Reign of Christ " Sunday.  He said, "Here, at the end of the church's year, we have a Sunday which we call the 'Reign of Christ.' Whether we can see it or NOT - we're supposed to celebrate "the Reign of Christ.'" 

"Yeah right", I wanted to shout. "Where in the world is Christ now?  People don't have any where to live and it's cold outside!  I'm tired of getting lost everywhere I go!  I want to work and earn my keep just like everyone else in this world!  And why are there so many people who have brain injuries who can barely get by on what little Social Security benefits they get?"  I look around and it doesn't seem like Christ reigns at all.

Mark pointed out that the book of Revelation is a story that arises out of a troubled church.  "You can almost see them there - a little band of Christians, surrounded in the pagan cities.  They seemed so small, so overwhelmed...Where on earth might one find HOPE for the future in such circumstances?" He reminded us that Revelation is known for its "sustained outburst of exuberant joy and praise.  The vision begins, not in despair - but in doxology, in praise, in cadences that scholars believe were derived in great part from some of the hymns of the early church."

He tells about the Wesley brothers and how they lived in the mid-18th century.  "The gin trade had led to huge problems with alcoholism....Child labor was the scourge of the land.  There was vast social dislocation and chaos.  Things seemed overwhelming."  Yet in spite of this, they wrote some of our most beloved hymns such as "O For a Thousand Tongues to Sing, Hark the Herald Angels Sing, and Love Divine, All Loves Excelling."

Mark suggests "if we really want to face our problems squarely, if we really want to stride into this new emerging world with confidence, the best thing we could do...is to sing.  Against all odds, when we join our voices together in some great hymn of praise, then you know - in the very depths of your being - that Jesus Christ reigns, that he shall rule until all things have been put under his feet, that the enemies of God will ultimately be defeated, that good will have the last word over evil, and tht all shall be well."

Singing and listening to music touches a place deep in my soul.  I really cannot explain it but every time I sing, play or listen to music,  I leave my body and spend time with God.  I've been listening to classical music every day for this purpose.  Today I listened to Bloch's Baal Shem Suite for violin and piano.  The first movement is Vidui (Contrition) which has a meditative quality.  When I hear it (and when I played it all those years ago) it felt like I was approaching God quietly, gently.

The second movement is Nigun (Improvisation) and that is where the music really soars.  Bloch expresses outgoing and uninhibited emotions here. When I listen, my spirit cries out to God "Why is there so much pain everywhere?  Where are You?  Don't you care?"  Finally comes the third movement, Simchas Torah (Rejoicing). It's as if God says to my spirit, "It's okay.  I know it's difficult some times but I am the center of all being.  Just hang on a little longer and rejoice in my creation!"    When I hear it (and when I played it) I felt God's joy and my own spirit sang.

John Wesley and the other great hymn writers felt it.  Ernest Bloch felt it.  When I listen, sing or play their music I feel it too.  Mark ends his sermon with these words: "Praise...is how we were created to live, even in the most unlikely times and places.  You cannot know that...unless you live just that way.  And then, you experience an overwhelming, utterly hopeful way to live....even to the end of the world.....Amen"        

Light of the World

This picture is a National Geographic image that was modified to contain all the seasons of the year.  I like it because it contains the moon AND the sun - two images that are important to my faith.  The moon reminds me that even in the darkness, God is there.  The sun reminds me of Jesus words in John 9:5 " As long as I am in the world, I am the light of the world."  Even though he is no longer in the world, I believe the Spirit who Jesus left with us,  is the light of the world.

I needed both images this morning because it seems everything went wrong.  I had a Presbytery meeting today so I dropped my dog off at the doggie daycare place before heading to the meeting.  Due to my spatial orientation issues, I got confused leaving and ended up driving the wrong way on the highway.  It wasn't as simple as just driving the wrong way but I got on the wrong highway and then couldn't figure out how to get back to where I was supposed to go.  I didn't use my GPS because I had read an article in the New York Times about how these sorts of time savers are causing people to use less neurons in our brains so we're losing brain power.  I figured since I had been there before and since I had what I thought were good directions, I'd be okay.

When will I ever learn not to take risks when it involves directions to anywhere?  The article was about folks who do not have a brain injury and therefore it didn't apply to me.  Like it or not, my brain injury changes everything about how I function in the world so I got major lost.  When I finally figured out where I was after about 45 minutes, I was experiencing cognitive overload.  I decided to stop at a gas station, get some gas and calm myself down. 

I've learned to make choices based on their costs. The cost of going to the meeting was, I would be exhausted and have no energy tomorrow.  Since  tomorrow I have a dinner meeting where I need to have as many of my mental faculties as possible, I decided I would just go home and skip today's meeting. My over responsible self began thinking, "I'm a member of Presbytery and I didn't get an excused absence and it's close enough for me to attend so I should attend."   However, my good judgement kicked in and since I had no responsibility at the meeting and going would mean I wouldn't be cognitively present for my meeting tomorrow, I decided to return home.

Having a brain injury means I can't do it all or even do all that is expected of me. I think I do expect too much of myself though. It is hard but I suspect it is hard for anyone whether they have a brain injury or not.  In our society expectations run very high.  Having a brain injury is helping me see how our expectations are often too high for everyone.  God doesn't ask or expect this of any of us.

I'm glad I saw this picture of the moon and sun today for it reminds me not to be so hard on myself.  This is a tall order but it is one I hope with God's help, I'll fulfill.  

   

Beach

Michael and I went to Myrtle Beach for a few days this week.  I think this is the best time to go since hotels are cheaper and we can take Sparky.  Pictured at left is Michael and Sparky as they romped on the beach.

I've never really understood the need for vacations.  Oh I like going places but traveling is difficult for me.  I do better when things are consistent which is why I like staying home.  I know where things are and I don't do well with anything unexpected. In fact, new information causes cognitive overload which makes me tired. I seem to have to "rest my brain" a lot which annoys me.  Michael convinced me that it would be good for me to get away from things for a few days so we went to the beach.

He was right. There is something about water that is healing to my spirit.  I enjoyed walking Sparky on the beach and wading in the water.  He's not a water dog but he likes anything new and different so he had a good time as well. It was fun watching him take a big drink of the ocean and end up with a mouth full of salt water!

However, I did have something on my mind that I just couldn't seem to get out of my head and as a result I used my Android to communicate with folks back in Asheville. It drove Michael a little bit nuts and at one point he got a little peeved with me.  He brought me back to my senses and I was able to put things aside.

The experience did get me thinking though.  I often get something on my mind and I need to deal with it right then.  I have a hard time putting something aside for later. I think sometimes I get too focused on something and then I suffer from mental fatigue because I'm thinking about it too much!

I had a phone meeting with my cognitive therapist last week and one thing she helped me with was coming up with a list of things I can do that are vital to my well being.  Among her suggestions were the following: "Be clear about my strengths and what I can offer. When I get stressed and stuck, put it down and do something else. Find my creative spirit on a regular basis."

The beach put me in touch with my creative spirit.  Also when I helped drive home, we listened to the Dvorak Cello concerto as well as some pieces by Ernest Bloch.  Music is a sure fire way to tap into my creative energy as well as the Spirit and  I must say, I do feel better today than before we went to the beach!          

Transformation

Yesterday at Circle of Mercy Mahan Siler preached a sermon titled When the Power Goes Out. I must say I could really relate to it.  He spoke about powerlessness and how this drives us to prayer.

In his sermon last night Mahan reminded us of I Corinthians 12:7 where Paul writes about the "thorn in his side." I know that no one knows exactly what this thorn was but I feel my brain injury is the "thorn in my side."  I have never asked God to take my brain injury away as Paul appears to have done with his thorn but it does feel a bit like a thorn.

I have a Presbytery meeting tomorrow and I thought it was at a different place.  Since I don't need to take my nap anymore, I decided not to figure out how to do this during the meeting.   I figured I could find a room somewhere at the church, put in my ear plugs and "rest my brain" for a few minutes. 

 However, I realized over the weekend that the meeting is in an unfamiliar place.  Since I don't do well with the unexpected, I needed to figure out how to deal with my over stimulation.  So I called and got directions to where I could go for a break.  I need to be prepared for when my spatial orientation stuff kicks in and I have that "flighty" feeling.  I can deal with it much better if I think about it happening before it really does happen.

So everything is all set.  The problem is, I worry about all the little things that might happen.  Will I be able to get to the meeting okay after taking Sparky to "Doggie Daycare?"  Will I get overstimulated and have to find a place to "rest my brain?" Will I have difficulty finding my car after the meeting is over?  I've decided to pack a lunch and will eat in a quiet room somewhere to get out of the stimulation.  I saw the button pictured below today and it struck a nerve.

I'm afraid I worry too much about what people think about me. My cognitive therapist reminded me that folks have so much on their minds already, they probably don't even think about me at all!

At the risk of doing the "proof text" thing, I did rediscover Romans 12:2 today.  "Do not be conformed to this world, but be transformed by the renewing of your minds, so that you may discern what is the will of God - what is good and acceptable and perfect." 

It doesn't matter what the world thinks of me.  I pray that my mind will be transformed into being what God calls me to be and not what God calls others to be.  Sometimes when I see all the other ministers (teaching elders) and elders (ruling elders) I feel bad since I cannot do as much as they can.  Our society is so "do" oriented which leaves those of us who are unable to do as much, behind.  Yet,  I think God really isn't interested in how much each of us does but rather in how we relate to God and the world around us. 

Gracious God, transform me!  I cannot do it myself even though I too often try.  Amen     

Overwhelmed

Mark Ramsey delivered another thought provoking sermon this past Sunday using Isaiah 43:1-8 and Ephesians 3:14-21.  I say "delivered" because when I read it today, I had a different impression.  Sermons really need to heard and not read.  After I heard it, I felt he was speaking directly to me since I often feel overwhelmed.  However, some of the stories contained a different meaning when I read them later.  I had to wade through my emotions a bit to write this but it was good for me.  Wading through emotions often is.

Being overwhelmed happens to me often. It happens when I don't pace myself and I try to do too much. It's often coupled with over stimulation and cognitive overload which is not what Mark was talking about.  I try very hard to avoid this and mostly I'm successful. I also know my limits now are not what they used to be prior to my injury.  I cannot do as much and I try to remember that this is okay. Sometimes though I compare myself to someone else who has a brain injury who is doing better than I am and then I feel bad.  I must remind myself that every brain injury is different and comparisons are impossible.  All I can do is what God is calling ME to do and no one else.

In his sermon, Mark shared a story about something that occurred during a commencement service at Emory University several years ago  Many notable folks spoke to the graduates who were more interested in celebrating the day then listening to the speakers.  Then there was a moment when everyone grew still as a man named Hugh Thompson was given an honorary degree.

He was, by far, the least educated person on the platform.  He had started college, but his family was too poor to be able to put him all the way through.  So he dropped out of college and joined the army and became a helicopter pilot.  In 1968 on a routine patrol he flew over the village of My Lai in Vietnam. He looked down out of his helicopter and saw United States troops, having lost their moral bearing and in a frenzy were massacring people in the village.

Many pilots would simply have kept on flying but he set his helicopter down in the line of fire, between the troops and the villagers.  He got out of the helicopter and confronted Lt. William Calley in the name of decency.  He went over to the ditch where they had thrown the bodies and combed thorough them --seeking anyone who might still be alive.  He found a little boy - who is in his 50's today - alive because he was pulled out of that ditch by Hugh Thompson.   He then radioed other 'coptors to come in a rescue the remaining villagers.

When he stood on the platform, he said to the students, 'I have no wisdom or eloquence to give you today.  I can only tell you what my parents taught me a long time ago  It was the words of Jesus: 'Do unto others as you would have them do unto you.' " And the students, for one breathless moment, were stilled by a vision of faith and humanity that had some size...They were overwhelmed."

The picture above is the one printed in the bulletin and I like it immensely.  I often stretch my hands or lift up my voice to God asking and hoping, for guidance.  I do hope to be overwhelmed by God's creativity in my life but sometimes I have on blinders and I'm not able to see.

Earlier Mark said that "Paul in Ephesians says that when we are overwhelmed, to the contrary, God opens up the floodgates and inundates us all the more.   But NOT with the floods of pressures and demands and brokenness and vulnerability- but with the great flood tide of the kindness and mercy and grace and love and generosity and joy and hope of God."

In addition to overdoing it, being overwhelmed has another meaning for me today.  Now for me it is being overwhelmed by the creativity and the goodness of God.  Thich Nhat Hanh reminds me to "change the channels" and focus on how God is working in me.  I like Mark's last statement in the sermon. "And you can TRUST that God will OVERWHELM us - in all the ways we most urgently need." 

This is my hope.

"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

Homeless Remembrance and Cookies

Today there was a Homeless Remembrance service at the Haywood Street Congregation. The church has worship services on Wednesday at 12:30 and many members attend who do not have homes. A free lunch is provided for everyone as well as a clothes closet. Folks are not required to go to the worship service in order to receive lunch which is unlike some other organizations here in Asheville. I went with my friend Bill who often attends there. He used to not have a place to live but now I am on a team of folks supporting him as he moves into housing.

I've attended once before but today was a special day. We were remembering all those who died who were homeless in Asheville this past year. The crowd was large and fairly noisy. At one point, a mother left with her crying child and the pastor Brian said it would be fine if she wanted to stay. She still choose to leave. I think Brian's attitude is a good one to have for all must feel welsome at worship. However, I was secretly glad she took the baby out. It would have made worship very difficult for me to attend do to my inability to divide my attention. (If there's noise I am unable to block it out and focus on what is important) I don't do well with a lot of stimulation and this service certainly had this. I really wanted to attend so I pushed myself even though I knew it wasn't the best environment for me.

Following the service, a group of us who are supporting Bill as he goes from being homeless to having a home, met together to bake Christmas cookies. I don't usually attend two over stimulating events back-to-back but both events were important to me. We met at the synagogue which was near-by and we even had Jewish cookie cutters! I did talk to the Rabbi a bit about the difficulties of being Jewish during this Christmas season. I would have liked to talk to her and others on the team more about this but it is difficult for me to have a conversation while I'm doing something. I now can do only one thing at a time and I just couldn't concentrate enough on a conversation with all the hustle and bustle. (again, dividing my attention)

I did have to leave the room for a bit because I could feel myself being overloaded cognitively. I went to the sanctuary (Again, my ignorance. Is it called a sanctuary in a synagogue?) and put my ear plugs in but there was construction noise right outside the window. I went back to the fellowship hall and found a chair in the corner where I could "rest my brain." I felt much better after returning ten minutes later.

I don't think people realize how much energy and planning it takes to do simple things when one has a TBI. If you have a brain injury, what sort of things do you have to do in order to participate in events? Do you find it difficult to concentrate on things when something else is going on? Commenting instructions are on the upper right hand side. (I'm unable to comment here so if you would like a response, contact me directly at puffer61@gmail.com) Have a happy holiday!

Occupy Wall Street

First, I want to say that I still am unable to respond to comments in the comment section. I really appreciated the comment yesterday since sometimes I wonder if my writing affects anyone. As I said before, I may switch to WordPress (although I've been putting it off because learning another system is hard for me) because commenting is much easier there than on Blogspot. I really want folks to share their stories in this section because folks with brain injuries need to talk to each other. For the time being if you want a response, feel free to contact me directly at puffer61@gmail.com If you feel comfortable leaving your email on your comment you can do that as well.

The picture on the left is why I am involved in this movement. I understand that many in the movement are not religious and that's okay. I actually like this because sometimes church folks can be a pain. (Sorry to people who go to church!) I'm drawn to this movement because there are so many things that occupiers believe which are a part of Jesus' teachings.

Many of the things I want to do with the movement really hit on my TBI weaknesses. I've made the decision to do these things and then take the consequences. Fortunately I choose things where I can handle the consequences which normally means dealing with the stress before and spending some time alone to recuperate and "rest my brain" afterwards.

I have written about this before but the occupy movement is full of challenging things for me. For example a proposal was on the Asheville City Council's agenda this past Tuesday that would no longer allow the current camp site in front of City Hall. I think we focus too much on camping to the determent of our other activities but I do believe camping serves the purpose of keeping these issues in front of people. When I walked my dog that morning, I thought of a statement I could make at the meeting.

One of the reasons I wanted to speak was because I'm middle aged and look different from the other protesters portrayed in the media. I don"t believe my differences are better in the least but I think we need to draw more folks like me. Making a statement at a meeting hits all my weaknesses however. My stress level comes into play since I can't take nearly the amount of pressure I could take before my injury. I do like to speak so I try and determine if the stress is worth it. It means taking some time afterwards to "rest my brain" and being very nervous before. I always allow much time to prepare a short speech. I never do it the day of but in this situation, if I wanted to speak, I had to prepare comments that morning.

I worked out a ride to the meeting. We were at the end of the agenda so I had to sit through the other presentations. This was a lot of stimulation for me. I made a point to sit in the front since blocking out background noise is hard. I like politics and I enjoyed watching the council members. However, I could feel my brain becoming overloaded so I put in my ear plugs to block out the sound. It felt a bit silly sitting in the third row wearing my ear plugs but I've learned to try not to care what people think.

There was a motion to send it to a committee and we were allowed to speak to this motion. It's funny but I liked what I had written. (It was a little like a short sermon) and I was disappointed to not say it especially after dealing with all my challenges. I don't think on my feet well but I decided to oppose the motion but saying part of my little speech. A television news camera man was there and a clip of my speech played on the news. Several folks who saw it and aren't involved in the movement, said they support the movement and hope it grows.

I'm glad I spoke and I may have to say the rest of my little speech in January when it comes before council again. I'll have to work on another opening because the one I had was great and I already said it. Ah well. I'll decide if speaking is worth dealing with all my brain injury challenges when we get closer to the date.

International Day of Action

Sunday was the day when all cities involved in the Occupy Wall Street movement came together and had some sort of action. Here in Asheville, there was a rally in Pritchard Park with music and speakers at 2 PM. The picture above is of that rally. Following the rally was the general assembly followed by picketing. Lorettas's Kitchen has been providing meals every day but I'm not sure they did this on Saturday. There was plenty of donated food, however and it was a great day.

The Asheville Citizen Times did a story on the occupation Sunday. http://www.citizen-times.com/article/20111016/NEWS/310160066/Occupy-Asheville-protesters-explain-why-they-re-here?odyssey=tabtopnewstextFrontpage This movement doesn't have any leaders and it''s been hard for people to pin down exactly what the demands are. When I attended the General Assembly, we broke up into working groups and I sat in on a group trying to come up with specific demands. A proposal will come before the General Assembly which will then decide by consensus whether to support this proposal.

I support this movement 100% but it is not a good project for someone with a brain injury to be involved in. Due to my frontal lobe injuries, I need structure and organizing anything is very difficult for me. This movement has no structure and is figuring things out as it goes along. Yesterday I was fortunate to sit next to a couple of folks involved in the organizing process and listened in on their conversation. They mentioned many of the things I've been concerned about. I was impressed with their thoughts and it gave me hope that this movement is going somewhere. I don't need to step up for there are others willing and able to do this.

Let me mention a couple of my challenges. I've mentioned cognitive overload before and it was really a problem for me during the meetings. So much goes on and I have to "rest my brain." Toward the end of the rally I knew that I needed to go somewhere, put in my ear plugs and sit quietly for a few minutes. The problem was, we were at Pritchard Park in downtown Asheville so there really was no place for me to go. I ended up walking to the back of the park and finding a place by a wall and under a tree. I put in my ear plugs and sat down on the ground next to the wall. The ear plugs didn't block all the sound but it was enough. When I heard the meeting was about to begin, I joined it again.

It is difficult for me to focus and to pay attention in these types of environments. I have discovered the best way for me to focus is to sit near the front. I've gone to two other partial general assemblies and I sat in the back. This caused problems because I kept hearing people talking around me and I could not focus. This time I decided I would sit right in the front. I found a place for the rally but when I left to "rest my brain" for a few minutes, I had to find another place in front. I felt a little uncomfortable moving to the front like I did, but I knew it was the only way I would be able to focus on the conversation.

I wish I could remember names! I watched Sunday's meeting last night on the live stream and one of the organizers said something about homeless folks and I had some resources to share. I didn't know his name so I spent a good part of today sending emails to the facebook group. I finally reached someone by messaging on facebook. I don't even know if my resources would do any good but at least I got them to the right place. I'm going to start a file with a list of the names of different people from the group. There is a facebook page with 3000+ members and I'm forever getting confused as to who is who.

I plan to set limits as I do with other things that are difficult for me. I won't be able to attend many general assemblies but I will attend the ones I can. I plan to read the information on the web site and listen to the live stream. I really support this and I want to be involved in any way I can.

If you are a brain injury survivor, are there things that are difficult for you to do yet you still try to do them? Is it hard for you to accept this fact? Do you find compensatory strategies to do those things? See above right for commenting instructions. I'm still not able to respond to your comments here do to technical difficulties but feel free to contact me directly at Puffer61@gmail.com if you'd like a response.

Troy Davis

Last Wednesday night Troy Davis was put to death by the state of Georgia. Thousands of people all over the world tried to stop it to no avail. One of my facebook friends wrote, "I wonder what's going to happen....all I know is, if Pope Benedict, Jimmy Carter and Bob Barr all agree on something, somebody should listen." I am very much opposed to the death penalty but in this case it's possible an innocent person was killed.

All this brought back memories for me. In the 90's, I began visiting a man named Terry Mincey who was on death row in Jackson, Georgia. When GA switched its execution method to lethal injection, Terry was the first man killed. As a result the event garnered quite a bit of attention. There is always a vigil outside the prison but this time there were newspaper cameras everywhere. At one point, I got angry and screamed, "Stop taking my picture!" Immediately a group of people stood in front of me to block the cameras but it was too late. A picture ran of me in the Atlanta papers. I must say, it captured my sadness perfectly.

I preached a sermon about my experience with Terry at the Open Door Community in Atlanta afterwards. I don't know if I can attach it to this blog but if you're interested in reading a copy, contact me directly puffer61@gmail.com) and I'll send it to you.

Due to my TBI, visiting Terry was difficult for me. The Open Door Community visits the prison every month and I first went with them. They drive a van the 1 1/2 hour south to the prison from Altlanta. Many of the folks on the trip are family members. Sometimes the trip was noisy (overstimulation) with children laughing and I found the trip difficult. Since at that time I wasn't driving on the highway, making the trip alone was not possible so every month I made the trip.

Pencil and paper are not allowed in the visiting room. I have learned that if I want to remember something, I must write it down. As I've said before, there are three parts to memory. First, one must get it in the brain. Second, it must be stored and third, it has to be retrieved. My way to store it is to write it down and then I can retrieve it by reading it later. I always took notes about my visit when I was riding home but I'm able to remember something for only a short time before I must write it down.

Leaving the prison was quite an experience. I waited for the guard to let me out of the room. I then waited for my companions before our long walk out of the prison. Trying to attend to things and concentrating really wore me out (cognitive overload, resting brain). I put in my ear plugs and slept all the way home. There was often noise in the van which made resting difficult for me. Fortunately later, I found folks who drove up separately so I didn't have to continue taking the trip with the Open Door Community. Either way, the trip wiped me out.

My experience with Terry made me interested in visiting as clergy. I tried doing this once but realized it was going to be very hard for me to do with all my challenges. Terry knew about my memory challenges and he often wrote me letters about our visits. This helped immensely. I think when I first began visiting, Murphy Davis, who is responsible for setting people up with someone to visit, choose Terry for me because she knew he would understand my challenges and be willing to work with them.

In retrospect, I'm very glad I took the opportunity to visit Terry even though it pushed on all my deficits. In the early years of being a survivor, I didn't know how to pace myself. Sometimes I did more than I really was able and I then had to sleep for days. Now I know where my limits are and I try to plan for them. However, sometimes things don't go as planned. Troy's execution was one of those times. It was postponed for hours and instead of going to bed early like I always do, I stayed up and watched Democracy Now which was broadcasting from the prison. I hoped the Supreme Court would stop the execution but this didn't happen. So I stayed up and watched till the bitter end.

Retreat

Michael and I attended Circle of Mercy's family retreat this weekend at the Hinton Center, a Methodist retreat center about two hours away from Asheville. Retreats are always difficult for me since I do much better when I know my surroundings. I decided to attend this one because I was particularly interested in the program. One family in the program spent a year in Cuba helping set up a prison ministry while the other spent two years in Columbia as MCC volunteers. In addition to hearing about both trips, I got to know my fellow Mercites much better.

Since I no longer have to take a nap at noon, I don't have to worry about making sure I have a place to lay down then. This has freed up my daily schedule but it still hasn't taken away my over stimulation, "resting my brain" or my attention challenges. I always sit in the front at both churches I attend so I'm not distracted by the various sounds around me. Children wiggling and whispering are particularly difficult for me. Children have a lot of energy and this is a positive thing. It pains me that I often cannot enjoy this energy since it pushes against my deficits. I can only imagine how difficult having a brain injury would be when one is trying to raise children at the same time!

We had our meals and our programs in a large "live" room. Often we broke into small groups which was very difficult for me. I had to filter out all the other groups as they talked which I could not do. These type of events always overstimulate me and I then I experience cognitive overload. On Saturday morning our breakfast and two sessions really pushed on all my deficits and my brain was very tired. I spent part of the afternoon sleeping and just getting away from the stimulation.

My spatial orientation issues came into play as well. The main building was in the middle while families with children slept in one building and those of us without children slept in the building on the other side. I couldn't get straight which side my building was on. Every time I left the main building to go back to my room, I turned the wrong way. I must say, it really was sort of funny. I still worry about what people think of me (I'm working on this!) and I imagined people seeing me turn around several times and thinking I was some sort of space cadet!

I did get to know several Mercites much better. It was a great retreat and I'm glad I went. Ken Sehested, one of the co-pastors quoted someone (I can't remember the person's name) who said, "The opposite of poverty is not plenty, but sharing." While we in the United States have much to learn from people who live in poverty, I took this quote very personally. "The opposite of being alone and misunderstood as a brain injury survivor, is to reach out to others and share my struggles."

That is what I did this weekend. Of course there is a danger of complaining about them endlessly but I'm careful to avoid this. There also is a danger in expecting everyone to change for me and I try hard not to do this as well. As Jesus said in John 10:10, "The thief comes only to steal and kill and destroy. I came that they may have life, and have it abundantly." Every day, I'm learning how to manage my TBI and live life abundantly.

Against the Wind

This is my second post on two different sermons I heard last week on Matthew 14:22-23 (see "Water Walk on August 8). Mark Ramsey, the Pastor at Grace Covenant Presbyterian, preached this one and like Ken's, I found ways it applied to me as a TBI survivor. Mark said,"But while he was praying, the wind came up and waves began to batter the disciple's boat. Whatever you believe about the rest of this story, surely you can believe this part: the wind was against them."

As a TBI survivor, the wind is against me. It's against me when I get lost all the time. (spatial orientation) It's against me when I have difficulty organizing my thoughts. It's against me when I get overstimulated from the various sounds around me. It's against all of us but we find ways to push against this wind.

I think of an experience that happened at an brain injury support group in Atlanta of which I was a part. The group consisted of survivors and their supporters. On one evening we were talking about a difficult situation occurring in the Georgia Brian Injury Association. Some of us had strong feelings and it got pretty tense. Suddenly, Brian shouted "Stop." Now Brian uses a wheel chair and has great difficulty speaking but everyone quieted down to hear what he had to say. With great difficulty he continued. "We're all on the same side!" After he spoke, no one said a word because everyone knew he was right.

If we are going to push against the wind, we need each other. That's why being around other brain injury survivors is important. We can understand what the other is going through. We started a support group here in Asheville called "Brainstormers" because we needed a place where we could share our struggles together and give each other support. There is another support group here but it has a different focus. Unfortunately, we havn't been able to keep it going but I don't want to give up on it yet. I'm going to try and find someone who can work with me to push against the wind.

Mark also said, "In this story it was not the storm that sank Peter. It was fear and his inability to believe in the sustaining presence and power of God in the midst of the storm" Fear encapsulates a lot of things with worry and distress among them. I worried when I went to the rally downtown on Wednesday. I worried about parking so I took the bus. I used to take public transportation in Atlanta when I couldn't drive. I always wrote my bus numbers and stop times on a little piece of paper because I couldn't remember them. I saved each piece of paper so I could use it again when I needed to take the same trip over which was often.

On Wednesday, I used an umbrella to shield me from the hot sun as I waited for the bus. I shared it with another woman and was remind again how hard it is not to have a car in Asheville. In the process of paying my fare and putting down my umbrella, I lost the little piece of paper which told me how to get to the rally. When I got to the bus station, all I could remember was I needed to get to Pritchard Park. When I arrived there, I discovered it was at Pack square. At least I had the "P" right! So I got directions to Pack Square and arrived only a little late.

All the stimulation of taking the bus, trying to focus on the speakers and standing in the hot sun overloaded me cognitively and I needed to "rest by brain." So the next morning, I swam hard laps. I usually take a high intensity water aerobics class but I didn't need to focus on an instructor or try to listen to her with all the noise from a children's class on the other side of the pool. Swimming laps and praying later, allowed me to "rest my brain" so that I could continue pushing against the wind.

Mark also said, "Faith is not the absence of fear (or worry and distress) but courage to walk through the fear and take the hand that is offered. To be courageous is not to be fearless; it is to be able to act in spite of fear." We need others in order to push against the wind.

With all your challenges, how do you push against the wind? Do you have support networks? I would like for this blog to be a place where brain injury survivors can share their struggles. If you have a comment, see the directions on commenting above right. Due to technical difficulties, I am unable to respond here but I read every one. Hopefully, I'll fix this soon. Feel free to comment directly to me at puffer61@gmail.com

Sunday School

I attend a Sunday School class at Grace Covenant Presbyterian called Knowing and Applying the Bible Every Day. We are studying a book on Matthew by Alyce M. McKenzie and different members of the class take two weeks to lead each chapter. I enjoy discussing the Scripture passage and we have some wonderful thinkers and teachers in the class. As a result, sometimes we spend the whole hour "knowing" and not much time "applying." For this reason, the facilitator suggested we watch the clock and at 10:15 if we haven't spent time "applying" we need to shift to this.

Since I've been pretty vocal about my concerns I thought I'd lead the class myself in order to model my vision. This sounds good , doesn't it? The problem is, it is difficult for me to lead a class. Since I have trouble thinking on my feet, facilitating is pretty impossible. Before my brain injury, I used to be a good facilitator but this is another loss I must learn to accept. As a result, I spent quite a bit of time planning and worrying!

The passage I have is a long one - Matthew 26:47-56 which leads up to the crucifixion. I used to love spending hours studying the fine points of scripture. I can no longer do this without experiencing "cognitive overload." When this happens I can't think of anything at all.

Since I now have difficulty with organizing my thoughts, trying to organize a study session is a bit of a challenge. I started a few weeks ago. I used to do things for long periods of time until it was finished. I can't do this now so instead, I began working on it a few weeks ago and worked on it in short spurts. I planned when I would work on it so I wouldn't worry needlessly.

Then I typed out an outline so I would have something to use. Of course this took time since it is difficult for me to organize anything. After a few rough drafts of my outline I settled on something I thought I could use. I knew I would be nervous since doing any sort of leading, speaking or preaching makes me nervous. I decided to see if I could handle this nervousness without losing any sleep. I prayed and even asked a few folks to pray for me.

Yes, I was stressed a bit. Yes, I lost my place a couple of times. But I learned that God can use me even if I'm not perfect. We didn't spend too much time "knowing" but spent time "applying" and this was my hope. God was there and did use me to allow God to speak to us. For this I am grateful.

So what did I learn? I need to trust God and stop worrying. I have to do much preparation to do anything but sometimes it is worth it. I knew this would stress me out but it was a choice I made because I thought it was important.

If you have a TBI do you have difficulty organizing your thoughts? Do you stress out more now than before? How do you choose what is important for you to do and what you must give up?

Lunch

I take a water aoerbics class at the Y on Tuesday and Thursday mornings. Yesterday, we went out to lunch to celebrate the leader's birthday. When I was in Italy and not in Holland (Welcome to Holland) I wouldn't have been able to do this. I did see other people at the restaurant meeting someone from work for lunch and I remembered how I often had lunch meetings. For a moment I missed those days but I'm in Holland now and here I've been able to meet these strong, independent women and I like being with them. I never would have met them in Italy.

This was the first time in ten years that I've actually been able to go out to lunch at lunch time without having to take a nap earlier. (Fatigue) I still have other challenges. It's difficult for me to have lunch when I'm seated at a long table in the middle of a room. I can't filter out the noise of the other tables around me but yesterday we were the only ones in our section so it was okay. I did think about all the times I've been at a restuarant when a large group was having their meal. The talking and laughing makes it difficult for me to concentrate on my own conversation since I'm unable to filter out the other converations.

Churches have a lot of meals together. While I like this, it does present a problem especially if the tables are large. We had a dinner at Grace Covenant a few weeks ago. I knew if I sat at a table in the middle of the room, the noise would make it very difficult for me. Fortunately, there was someone sitting at a table at the end of the room that I wanted to talk to so I sat with her. As the room filled up with more people, their voices sounded like a huge roar to me. I can handle this stimulation for a while but too long and I need to "rest-my-brain" (Cognitive Overload.) I'm going to try and remember this for the future. I really am able to stay longer if I am sitting in a more managable place.

This noise challenge seems to have improved. When I was first injured, I could stand very little noise. I remember back then, I attended a party for brain injury survivors where the music was loud. It didn't bother a lot of people but it bothered me. I had to keep leaving the room for a few minutes. It did remind me again of how everyone with a brain injury is different. The filtering part of my brain was injured where other folks may not have the same problem.

Do you find it more difficult now to filter out noise? Do you have to take care when you go to a restaurant because the taped music or other sounds bother you? Feel free to comment here or email me directly tamara@indylink.org . If you have a google or another account you can select it when the comment section asks you to select an account. Feel free to select annonomous if you'd rather.

Memory

I really don't know why this happens but I remember things at night. I can't count the number of times I wake up in the morning with a thought about something I'm doing. Sometimes I even wake up in the middle of the night and have to get up and make a note or I'll forget it. It happened last night. As I took my shower this morning to get ready to go to church, I remembered something I could have done yesterday to avoid driving the wrong way to the Blue Ridge Polymer Clay Guild meeting. And it's such a simple thing! In fact, many of the compensatory strategies are simple if I'd only remember and do them!

I was running a little late yesterday so I dashed into the car and went on my way. I didn't think about the directions to where I was going. I used to jump in my car and go where I needed to go all the time. The problem is my brain works differently now. The directions were in my brain but I needed to take a minute or two to get them out. I would have taken the correct highway if I had spent two minutes doing this. Instead, I ran out the door and drove the wrong way. Folks do this all the time. Usually they realize it and then make the necessary corrections.

For me it isn't this easy. It threw my whole system off. Cognitive overload took over and I became "spacey" and couldn't make the necessary correction. I had to return to where I started and once I did this, I knew exactly where I was going. Well maybe not exactly where I was going, since I had to check for landmarks along the way to be certain I was going the right way. It all could have been avoided if I had taken the two minutes necessary to get the directions out of my brain. Or if I had taken the written directions with me.

This process has helped me realize something about this blog. Writing about my experiences is forcing me to reflect upon them. I hope I'll remember now to take a few minutes before I do something to think about it. For example, I have to lead communion tonight at church. (Circle of Mercy, my night church.) I spent a few minutes yesterday trying to think of something to say that would flow from the rest of the service. Now I need to take a few minutes and make sure my notes are together.

Plus, I need to spend time asking for God's Spirit to speak through my words and my being. Many folks at the Circle can lead communion without notes but since my brain works differently now, I cannot do this. I have to plan ahead and rely on God's energy to work through me. And God always does.

I'm in Holland now not in Italy. As I wrote in an earlier post, "if I spend hours brooding and mulling over my losses, I'll never get to enjoy the extraordinary things that are here in Holland . And Holland has some extraordinary things."

Cognitive Overload

People who have a brain injury experience what is called cognitive overload. Some of the neurons in our brain died when we sustained our injury so now those remaining must handle much more than before. Our brain controls everything. For example, when I drive I must keep track of the other cars, traffic lights, signs, and everything else. I drove to a physical therapy appointment this morning in the light rain, the sun blocked by heavy clouds. As a result I had to be more attentive to my surrounding.

This ability to pay attention is another thing difficult for survivors. I become more tired when I have to focus on something. So my ten-minute drive (some on the highway which means I must process information quickly) followed by a short appointment, and then my ten-minute drive home, wore me out. I then spent a few minutes in contemplative prayer.

I find that getting in touch with God is important to managing my brain injury. I feel much more relaxed when I can pour out my concerns and I’m in touch with God’s healing presence. This is important for all of us but it is crucial for me in order to function. Since I am no longer able to push myself without breaking down completely, I’ve become much more aware of how those around me stay too busy. Some of this is unavoidable but sometimes we need to cut down on our responsibilities for our own well being. I don’t believe God calls any of us to spend our lives tense.

Now, back to cognitive overload. Since I cannot handle as much as before, it is also important for me to simply “rest my brain” by doing something mindless. I receive the Sunday New York Times, which I save to read throughout the week. I still have a few “mindless” stories (style etc.) left to read which allows me to “rest my brain.” All survivors must find their own ways to rest, which may be different from what works for me.

How do you handle cognitive overload? Have you found ways to “rest your brain?” Is it difficult for you to pay attention? Feel free to comment or email me directly at tamara@indylink.org.