Waiting In Darkness

I went back through my blog and noticed how in my last few posts, I sounded rather depressed and frustrated that I have a TBI.  In fact, I didn't like reading them for this reason.  However, I participated in an action on Saturday about the water issue here in Asheville and it energized me.  I do love actions!  I'll say more about this later but first I want to comment on today's devotional by Richard Rohr.

In it Rohr writes, "The darkness will never totally go away.  I've worked long enough in ministry to know that darkness isn't going to disappear, but that, as John's Gospel says, 'the light shines on inside of the darkness, and the darkness will not overcomeit' (1:5). He goes on to say that "the real question is how to receive the light and spread the light."

Looking back over my posts, I see my darkness.  I often get mad when I can't remember names or I get overstimulated. I can't help thinking, "if only I didn't have these challenges, I could do so much more!"  Sometimes I just lay on the couch and mope.  There's even been days when I don't bother getting out of bed because it seems I have no purpose in life.  "It would have been better if I had just died in my car accident all the years ago.  Then I could be with God and I wouldn't have to deal with all these challenges," I have thought.

Rohr says there are two ways to release our inner tension.  The first is to stop calling darkness darkness and to pretend it is passable light.  I've done this in the past and he is right.  His second suggestion is one that I find helpful just now. "Stand angrily, obsessively against it, but then you become a mirror image of it.  Everyone can usually see this but you!"  I did this on Saturday when I demonstrated against the states takeover of Asheville's water system.

On the right, is a picture of me demonstrating as many in our legislature were driving to a Christmas dinner at the Grove Park Inn.  Folks lined the streets carrying signs against this take over.  It's interesting to me that we were in the dark as we demonstrated. Rohr writes, "Our Christian wisdom is to name the darkness as darkness, and the Light as light, and to learn how to live and work in the Light so that darkness does not overcome us."

We were standing in the darkness, as we often must do, when we work for peace and justice.  It isn't fair that I have a brain injury just as it isn't fair that so many folks must live with a disability.  We must "fit in" to a world that isn't made for us.

One example of this for me is, I really enjoy singing in the choir at GCPC.  However, I can't handle the stimulation as the choir processes in and out.  As a result, I've found a little room behind the Sanctuary where I can sit quietly wearing my ear-plugs so I may "rest my brain."  This makes my darkness, as Rohr describes, "passable light." 

At the end of his devotional, he writes "We must wait and work with hope inside of the darkness - while never doubting the light that God always is - and that we are too (Matthew 5:14).  That the narrow birth canal of God into the world -through the darkness and into an ever-greater Light."

"All or Nothing"

The picture at left is of a book by Kathleen O'Connor called Jeremiah: Pain and Promise. I've always disliked Jeremiah and I've tended to skip it because it is so violent.  The God it depicts is not a God I want to serve so I've ignored  it and focused on other parts of Scripture.  In the preface O'Connor writes  "It (this book) is an interpretation of aspects of Jeremiah using insights drawn from contemporary studies of trauma and disaster."

However, when I discovered this book published in 2011, I wanted to read it.  I've only read three chapters but I think it will give me important insights into Jeremiah. (I've also disliked Paul and so I contacted folks I know who might be aware of things I can read about him as well.  But my first focus is on Jeremiah.)

Reading books and retaining information is very difficult for brain injury survivors.  When I was cleaning out my files on brain injury, I came upon some old notes I had from rehab about reading and studying a book.  It used to be I could read something and then remember it right away.  I have gotten frustrated with all the things I must do to remember now and the way I've dealt with it was to completely stop reading biblical and theological books.

I must say, I do have an "all or nothing" mentality.  I get excited about things I used to be able to do easily  and want to be able to do them as I could before.  I also see folks around me who don't have a brain injury who can do these things and I often compare myself to them.

When I do a lot of intellectual thinking, I become overstimulated which then makes me tired. As I went through my brain injury rehab files, I came upon a list of things to do for recreation and to "rest the brain."   The list suggested "listening to music" which reminded me to stop and listen to a recording I have of Yo-Yo Ma playing the cello concerto in b minor.  Again, music touches my being way more than anything else.  So I stopped and listened to it.  I felt so much better.  Perhaps I can lick my "all or nothing" mentality!

One wild and Precious Life.

At the Good Friday service at Grace Covenant Presbyterian Church, one of the speakers read from "The Summer day" a poem by Mary Oliver  It really stuck with me and if you want to read it here's the link: http://www.loc.gov/poetry/180/133.html .  I had heard it before but hearing it then was just the right time.  She wrote, "Tell me, what is it you plan to do with your one wild and precious life?"

I had one of those long, drawn out Presbytery meetings today.  They are always difficult for me and since our Presbytery is stretched out so far geographically, I've made the choice to attend only the ones I can drive to on my own.  This means I only attend perhaps two out of four each year.  This one was particularly difficult because there was an issue before the Presbytery with which I felt rather strongly . I decided this past weekend to write a short statement and speak today.

It almost felt as if God was giving me the words to say.  I didn't want to speak there because it stresses me out terribly. Yet, I couldn't ignore that pull inside of me.  So I wrote something.  The words came which was great.  I practiced it a little bit because I'm not one of those preachers who can preach without practicing.  I knew that my words weren't really supposed to be a sermon but I thought I would say them anyway.

I chose to wear moon earrings that a friend of mine made for me because the image of the moon always gives me strength.  I don't as a rule wear dangle earrings whenever I speak but I decided this time, I needed anything that would remind me to stay calm.

The day started out with me taking Sparky to Doggie Daycare.  It's a new location so I had to use my GPS.  I then saw the highway was backed up going back so I decided to try going to the meeting a different way.  My GPS took me the long way but I got there to the meeting just fine.  When I arrived, I had to "rest my brain" by putting in my ear plugs and sitting in the car for a few minutes.  Driving even more than 40 minutes tires me out.

So when I felt ready to enter the building I did.  As usual, it was crowded and noisy.  I don't do well in those environments but I managed to get through it.  I sat in the front so I could concentrate on the proceedings.  What I didn't bargain for, was the moderator's lack of moderating skills.  She kept confusing Roberts Rules of Orders and seemed unsure.  I know I wouldn't want to try and moderate this group.  I was nervous enough just by speaking for 1 1/2 minutes! I felt for her because she's was called to a very difficult job and I know this only too well.  However, folks stepped forward to help her and in the end, it worked out.  God truyly is a great God!

Never the less, I found myself getting angry inside at all the shenanigans.  The only thing I could think of to do was to step out for a few minutes, put in my ear plugs and "rest my brain"  So that is what I did.  I've stopped worrying what folks think of me when they see me sitting in a corner somewhere with my eyes closed and my ear plugs in.  I returned to the meeting when my emotions were better under control.

What did I find when I returned?  The same stuff!  Again, I lasted as long as I could but I decided I'd better just get out of there and come back after lunch.  So I went to my car, put the seat back and rested for a few minutes.  I pulled out my Android and my lunch and munched happily away.

I did, however, remember that Bills and Overtures had said anyone who wanted to speak about one of the overtures, could meet with them.  I decided this was a good thing for me to do.  Shoot, I had spent time writing my little speech and I wanted to say it!  I think God was with me because I was able to locate folks who knew where the committee was meeting so I went there.  I was early so again, I put in my ear plugs, closed my eyes and rested my brain in the quiet room.

After saying my little spiel and then hearing everyone's comments at the meeting, I changed my view on the amendment. I had written my little spiel in favor of the overture so I adjusted it a little.  I then went back to the meeting in progress.  This time I sat in the back of the auditorium so I could freely roll my eyes.  I figured I would speak if I felt the spirit moving inside.  If not, I wouldn't.

A funny thing happened.  I acted like a lot of ministers at Presbytery meetings. I think they talk just so they can hear themselves talk!  I wanted to say my little spiel even though I didn't think it would change anyone's mind.  So when the time came, I spoke.  It went fine like it always is when I speak.  I had gone through all my anxiety for what amounted to nothing.

After the meeting, I struggled with my feelings.  Did I really hear God moving in my spirit and telling me to speak or was I only hearing my own voice?  On the way out, I shared my concerns with a minister friend and she said something interesting.  She alluded to her Quaker siblings and how they are always talking about feeling God's Spirit within them.  Perhaps God was moving in a way that I didn't yet understand.

I've thought about her words often since the meeting.  Did I misunderstand God's voice?  I've come to the conclusion now that I did not.  Michael and I are doing several presentations on brain injury to law enforcement professionals as well as some other folks.  We've done two and I was a nervous wreck for the first one.  It's funny because Michael is doing the bulk of it and  I'm only adding my personal survivor stories. He should be the one filled with anxiety! The first one went well and we were asked to do another.  I stressed over this one a little less than the first.  So now we are going to do a third one on May 1. 

This experience today, helped me see that I still can speak.  Oh, I can't remember the words as well and I worry that I'm going to mess up but so far, it's been okay. The same with the brain injury presentations.

 So what am I going to do with my one, wild and precious life?  I'm not going to waste it by being filled with anxiety!  Tomorrow I was supposed to deliver vegetables from GCPC's garden to a friend who has a low income and cannot afford to buy them.  Instead, I made the necessary calls and someone has agreed to do it for me. So I plan to drink good coffee, write in my journal and read the New York Times.  I might even work out in the yard! So I'm going to still be responsible but I'm going to enjoy this life God has given me.  After all, this is the only life I have and I don't want to waste it.

Holy Week

Mark and Kristy lead a class on the Resurrection stories and art at Grace Covenant Presbyterian Church (GCPC). In the first session, they laid out 15 paintings depicting the Resurrection in art.  We were asked to look through them selecting the ones that drew us in.  I saw glorious images of Jesus ascending into heaven but none of them really struck me until I saw one by Michael Ciry, pictured on the left.  Someone commented that this Jesus looked like he just came out of concentration camp.  I think I was the only one drawn to that painting.  I could relate to that Jesus because that Jesus knows exactly how I feel.

I've taken on too many things again this week.  They're not stressful but my perfectionism makes them more difficult then they need to be.  I worry about them which uses up too many of the neurons in my brain. This in turn stresses me out and I'm miserable.  I try and spread commitments out but it didn't work this time.

It doesn't have to be this way which is one reason I agreed to do everything.  I want to practice dealing with the stress.  When I led worship all the time, I was a perfectionist.  Every word had to be just the right one and I was careful not to forget a word or trip as I walked to the pulpit.  I didn't have the challenges of too much stimulation which is now part of everything I do.  Worrying only adds to the stimulation.

As a TBI survivor, I cannot be a perfectionist and I can't worry about what people think.  For instance tomorrow I'm going to lead communion at Circle of Mercy (COM).  When I lead, it is simple and certainly not nearly as "preachy" as others who lead.  But this is how I do it.  Some people might like it, others won't but that's okay.

I've said the words of institution hundreds of times but due to my brain injury, my memory can't be trusted and sometimes I forget simple things.  I worry this will happen but you know what?  The sacrament doesn't depend on me so if I mess it up, it doesn't matter!  I need to say this to myself a million times.  (Since the Alliance of Baptists , one of COM's two denominations, does not view communion as a sacrament, I've had to think more carefully about what communion means to me.)

On Good Friday at GCPC, nine different leaders are leading 20 minutes on the Last Words of Christ.  Again, my perfectionism is getting in the way.  I'm a good speaker but I worry about forgetting the words. I also compare myself to others.  I printed the words out in very large print double spaced to help me with this.  In all the times I've spoken since my TBI, I haven't lost my place or fumbled on my words. My eye contact isn't great now because I have to look at my words more but this is the way I now am.   I think my words will help folks reflect on the day plus they are fun to preach.  I'm trying to remember that some people may relate and others may not.  

So this Holy Week, I'm going to try not to be such a protectionist!  I'll see how this works.

Memory

I preached my favorite sermon Hagar: A First Person Sermon last Sunday at Circle of Mercy. I've preached this sermon several times and I must say, it's a pretty good one. I wrote it when I was a student at Central Baptist Seminary in Kansas City in the early 90's. I preached it again at Columbia Seminary in Atlanta for my senior sermon. I've since preached it at two other churches.

Usualy when I speak, I print the words double-spaced in HUGE type. When I spoke at Grace Covenant recently, I was glad it was short so I could get it all on one page. The copy I had of this sermon wasn't printed very large since the last time I preached it my double vision wasn't as bad as it is now. I figured I knew it well enough so it didn't need to be so large. Plus it's sort of annoying to have to turn so many pages.

It's the sort of sermon that would be better memorized but I just can't remember things like this now. The pulpit was set lower in order for a child to use it earlier but it was too low for me. I'm glad I knew the sermon well since seeing the words was difficult. I'm not sure what it is called but I have difficulty reading in a straight line. I always use my finger to mark the sentence so when I look up and then back down again, I know where my place is.

I have trouble remembering names. I get so irritated when someone says, "Oh, I can't remember names either!" I know they're trying to make me feel better but the opposite happens. I feel really alienated from the rest of society because I imagine they can remember someones name after being told it 500 times. I wish they would say, "I know it doesn't compare to your difficulty with names but I do have trouble with them as well so I know a little bit about what you mean."

When I go to a meeting, I always try and think about people's names beforehand. Sometimes I write them down on a little piece of paper and put it in my pocket to look at it later. I try not to be too embarrassed about asking someones name - especially if I've known them for a long time - but it is hard. I believe that calling someone by name is important but I just can't do it. I'm trying to accept my challenge in this area but it is hard.

Do you have difficulty remembering names or other things? I understand that some folks with a TBI aren't as severely impaired with this as I am but I'm interested in your thoughts. Commenting instructions are above on the right. I cannot respond to your comments here due to a computer problem so if you'd like a response, contact me directly puffer61@gmail.com

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.

Over-stimulation

It's happened again and I hate it. Prior to my TBI I could do things all the time. Now too much stimulation and I get tired. Even though I know this and am careful to avoid too much activity, sometimes I can't help it. When I say "activity" I mean paying attention to everything. I didn't realize how much one concentrates and pays attention to their environment every day until I became a TBI survivor. Simply driving or walking down the street means one is hit with all sorts of stimuli. We may not know it but lights, sound, speaking and everything else we do causes our brains to work.

For example, my day yesterday was too much for me and I didn't even do that much! Shoot, I used to have meetings, appointments and writing assignment all day and night long. Yesterday I worked in Grace Covenant Presbyterian Church's community garden in the morning. The garden is right in the front yard by a busy street with lots of traffic noise. After that, I delivered some vegetables to someone before driving home. All that in itself was a lot of stimulation.

I then cleaned up, ate lunch and visited someone in the afternoon. I really enjoy visiting folks for my church but when I concentrate on a conversation for a length of time, it wears me out. I then had to pick up my dog from day care. I know! I know! Day care for a dog sounds crazy but I have a dog that thrives on stimulation and he gets it there. But it meant picking him up before going downtown for a rally sponsored by the organization Move-On. I really wanted to go even though I knew it was a lot, so I went.

Even though downtown Asheville is not far, I didn't want to find a parking place and then remember where I parked the car (spatial orientation) so I decided to take the bus. I used to take the bus in Atlanta when I couldn't drive at all and I had tons of little pieces of paper with my bus numbers and times on them. I always had to write everything down including what subway station to take. (memory) It took a long time to get anywhere but it worked. The Asheville Transit isn't as good but taking a bus from my home downtown is pretty easy.

I brought my umbrella to shield me from the sun and I prepared to wait at the stop. A woman joined me and we shared my umbrella. The experience reminded me what I like about the bus. I always meet interesting people and I'm more aware of the difficult lives many people must face. I had a choice to take the bus but some folks don't have the choice at all. I had written my directions down on a little piece of paper but somehow in the commotion with buying my ticket and putting my umbrella down, I lost it. I remembered the first part of my directions from the bus station and began walking.

The problem was I thought I needed to go to Pritchard Park when I really needed to go to Pack Square Park. At least I got the "P" right! I asked directions to Pritchard Park but when I arrived there was no rally there. People gave me directions to go to City Square Park so I headed there. On the way, I found the rally at Pack Square. The picture posted above is one from that rally. Michael met me there at the rally and we drove home together. I was beat for it was a long rally but I'm glad I went. It felt good to be around folks who are as angry as I am about the budget cuts and high unemployment.

I usually take a high intensity water aerobics class on Thursday mornings but I didn't want to have to concentrate on a teacher's directions or worry about colliding into someone. Instead I swam laps. I didn't have to think and I could swim as hard as I liked. It's just what I needed. When I returned home, I realized I had left my swimsuit at the Y. This meant going back for it instead of resting my brain which I really needed to do. When I finally returned home, I put in my ear plugs and rested my brain for a half hour.

I had some other things I wanted to do this afternoon but when I push it this hard, I usually need to take it easy for a while. So I wrote in my journal, meditated and am planning to do things that won't stress me out. It is a challenge to try to be involved in one's community when one has a TBI but I am trying to find ways to do this.

If you are a TBI survivor do you get over-stimulated easily? How do you work with it? Some folks simply cannot do as much as I do and I must admit that sometimes I push it too hard. Every TBI is different and we all have to do what works for us. See top right for commenting instructions or contact me directly at puffer61@gmail.com. I still can't respond to your comment here but I read all of them.

Memory Implants

I read in the New York Times last week that scientists have come up with a brain implant that restores lost memory function. It's still a long way off but the article states "the implant demonstrates for the first time that a cognitive function can be improved with a device that mimics the firing patterns of neurons." The hope is some day these implants could be used in humans. There are, however, a number of technical and theoretical obstacles. "For one the implant must first record a memory trace before playing it back or amplifying it; in patients with significant memory problems those signals maybe too weak."

When I was learning about how one remembers things, I learned there are three parts to memory. 1) getting the information in 2) storing it 3) getting the information out. I can do the first two parts fine. The difficulty comes in retrieving the information. I've learned to always write things down if I want to remember them. My Android helps me here since I have an app that allows me to take notes.

Some folks with a brain injury can't get information in so when they write it down and read it later, it's like reading it for the very first time. I don't know any examples of folks who can't store information so I can't say much about this. It does seem like these implants could help someone like me. To be honest, as nice as it would be to improve my memory, it probably affects other things as well and I'm not sure I would want to take the risk involved in this.

Plus memory implants would not correct my other challenges like spatial orientation or organizational skill. When I first read this article, I began thinking what it would be like to have my former, uninjured brain. Things would be like they were before. Shoot, I might even be the pastor of an inner city church or have a position where I could do more pastoral care! But no this is my life now. And it's a good life.

Imagine that it is years ahead and these memory implants have come into being. Would you want them? What other challenges would you still have? See upper right for commenting instructions or contact me directly at puffer61@gmail.com.