Holy Anticipation

Last night I had to be at Grace Covenant Presbyterian Church for an alto rehearsal at 6 :15.  Ever since my accident, I don't see well in the dark.  I don't know exactly why this is or what happened to injure my eyes but something did.  As a result, I don't drive at night which is a real pain in the neck.  I couldn't find anyone to take me so I decided to take the bus.  I only needed to get it about an hour before I needed to be there so I figured it would be okay.

Of course I worried about it.  "What if I get on the wrong bus?  What if I pull the string to signal the driver to stop at the wrong place? What if I look like a jerk because I'm not familiar with the route?"  It's interesting because Mark Ramsey's sermon at GCPC this past Sunday was about Mary's song and it was called "What We Do While We Wait.....We Worry."  (The picture is "Magnificat!" by Sister Mary Grace Thul and was printed in the bulletin.)

We had an email exchange about parts of it yesterday before my bus trip.  I was especially bothered by one of his statements in the sermon: "...we find that anxiety has, by God's grace, become holy anticipation and against all appearances, and against all odds ---that literally saves our life." It's funny but when I reframed my worry this way, I wasn't so stressed.  By the time I was ready to go, I was okay. I think perhaps God's Spirit was at work.

I met my friend, Donnie, on the bus.  Donnie was homeless and he recently moved into an apartment.  He knew everyone on the bus which helped folks to begin talking to each other.  I discovered another woman was concerned about getting her connection as well.  When we got to the station, it was just in time for me to catch my bus.  However, I didn't know which one it was and by the time I figured it out, it had pulled out.  I ran after it screaming, "Wait!  Wait!"  A family with two young children were nearby waiting for their bus and they told me that once the driver closes the door it's not opened again. 

So I went into the bus station to try and figure out if another bus was going to come.  The guard sitting behind the information booth ignored my questions so I turned around and asked the other riders.  I was told another bus would come in about a half hour and I could wait.  I looked at my watch and saw I had 35 minutes until rehearsal began.  I said, "Shoot, I bet I could walk there faster!"  Another woman nodded and said, "Yep you could." 

I had no idea how far on Merrimon GCPC was but I figured I'm in good physical condition and it couldn't be too far so that's what I decided to do.  My first problem was trying to figure out how to get to Merrimon from the bus station.  Folks pointed me the right way but my spatial orientation issues got me all confused.  I asked several folks how to get there but I didn't write what they said down and I ended up walking all over downtown.

By the time I finally figured out where Merrimon was it was dark and I had only 15 minutes before the rehearsal began.  I thought about going back to the bus station to catch that bus but I wasn't sure how to get back to it.  So I trudged on in the dark. I considered stopping at one of the bus stops and waiting for the bus, but I do hate being in darkness outside like that. After a few feet, it is total darkness and it's a bit scary not knowing what is out there so I decided walking was the better option. 

It always helps me to think of a saying or a Scripture verse when I'm stressed out inside.  I thought back to Mark's sermon and tried to come up with that phrase that calmed me down before but all I could come up with was "holy *********!  I decided that wasn't the right phrase and walked on.

When I got to the McDonalds next to the church, the bus passed me.  When I arrived at the rehearsal I was a sweaty mess and was panting too hard to sing a note. Since my brain can handle only so much stimulation and my little journey began at 5 o'clock, by 7:45 I could tell I needed to "rest my brain."   One of the rest rooms has a couch so I went there, put in my ear plugs and turned out the light for a few minutes.  

I am thankful that God gives me, and others, the strength we need to live in our challenging, wonderful world.  


 

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."

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.

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.

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.

Travel

I like to see different parts of the world but I don't like to travel. I need to have things familiar around me and going to a new place always throws my system off. My husband, Michael, loves to travel so I try to deal with my difficulties. Sometimes, I just let him go alone which he doesn't mind at all.

This past week, we went to visit my family in Kansas City. It was wonderful to see them since it had been so long. The picture above is of my 90 year-old grandmother. We didn't think to take a picture of my whole family. I had some quiet time with my grandmother and it was wonderful to hear stories from her earlier days. It's a time I will always cherish.

Since I am sensitive to noise, I wasn't happy when I saw a baby on our 30 minute flight to Atlanta. I love babies but I knew he/she would cry which is what happened. I used my ear plugs but they didn't help much. We had a break in the Atlanta airport before boarding our next flight to Kansas City. Atlanta is a big airport and it was crowded which was another challenge to my over stimulation issues.

Unfortunately when we boarded the plane, our waiting wasn't over. There was a a warning light on in the plane's control panel so the pilot couldn't take-off until he figured out what it was. Of course this caused the passengers to joke and laugh. I just wanted to get out of the noise but of course this wasn't possible.

The trip reminded me again how glad I am to have a small family without a lot of screaming kids in it! Perhaps I would get better at being in so much stimulation if I was in it more. I can now drive on the highway when I couldn't in the beginning and that is because I pushed myself here in Asheville to do this. I also can handle large crowds better now. I do use compensatory strategies when necessary but if I had a big family with lots of children, I would have to use them much, much more.

If you have a brain injury, it it difficult for you to travel? How do you manage this? See above right for commenting instructions. I still am unable to comment here do to a glitch but if you'd like to hear from me feel free to email me at puffer61@gmail.com

Speech

The picture on the left doesn't have anything to do with my speech but rather is a picture of my coffee grinder. This morning I ground some coffee beans and brewed up some fresh coffee in my super-duper coffee maker. I don't drink coffee every day, only for a treat. When I drank it every day, I found I was addicted to caffeine and I didn't like this. So now I brew it a couple of times a week but I make sure it is good coffee. No Folgers for me!

I've got a lot on my mind. It doesn't take much now for me to get stressed out but I've learned how to deal with it. Prior to drinking my wonderful coffee, I went to the Y and swam laps. Normally I take an aerobics swim class but today I didn't feel like following an instructor's directions while making sure I didn't run into other class members. I even worked on my speed something I rarely do. I felt wonderful afterwards.

This past Sunday I did a short stewardship moment at Grace Covenant Presbyterian Church. I'm not one for speaking about stewardship but the theme I was asked to speak about was right up my alley. I am having some problems with double vision again. The doctor said it wasn't bad enough for another surgery but he wanted to try something different. He blurred the vision in my left eye with the hope my brain would make up the difference allowing my right eye to do the work. Well, my double vision went away but everything was blurry. When I speak, I always enlarge the words but this time I needed to make them really big to make up for my blurred vision. I tolerate the double vision must better than the blurriness so I ordered new lenses yesterday.

On Sunday, I made a point to sit on the right side up front since I knew I was going to speak from the pulpit. Unfortunately a child sat in front of me. I like children but I don't do well when a child fidgets and squirms. This is why I always sit in the front since I'm usually away from any distractions. I could feel myself getting overwhelmed and I looked to see if I could move somewhere less chaotic but there was no where to go.

I then remembered what I knew about over stimulation. One is stimulated in several ways: sounds, bright lights, touch and visual stimuli. The boy was getting up and down in his seat, playing with his cars on the pews and writing in his book. I decided to close my eyes to block out this visual stimulation. It worked! I could feel myself relaxing and when it was time to speak, I was fine. Of course, I worried what people would think when they saw me closing my eyes during the sermon but I figured it was a small price to pay.

I know I''m a good speaker. It stresses me out by I like to do it. When I was first injured, I repeated endless word lists trying to learn how to articulate again. I know plenty of folks who have a brain injury whose speech is not clear. This next Sunday, I'm going to preach my first-person Hagar sermon at Circle of Mercy. I've preached this one several times and it is a fun one to preach. I'm doing everything I know to deal with the stress (ie swimming hard laps this morning) and it will be fine. I probably don't even need to enlarge the words much since I know it so well. I wish I could preach it without notes but I don't trust my memory.

How do you deal with stress? If you have a brain injury, do you struggle with over stimulation? See above right for commenting instructions. I'm still not able to comment here (I think a friend is going to help me figure out why that is) so if you would like a response, email me directly puffer61@gmail.com I see this blog as a way for folks with a brain injury to be able to share their struggles but I've discovered commenting here is difficult. Would you comment if it was easier to do so? I can switch to another service but I don't want to do this unless folks will use the commenting section. Email me your thoughts.

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.

West Asheville Street Clean-up

A couple of months ago there were some home invasions where neighbors were held at gunpoint in my neighborhood here in West Asheville, NC. A group called "West Asheville Watch" was hastily formed and we now have a facebook page (1300 members) and as of yesterday, a web site. The police can only do so much and studies have shown that when people look out for each other and have neat and clean neighborhoods, there is less crime.

So on Saturday, I participated with about 18 other neighbors in a project to clean about 1/2 mile on Louisiana Avenue. We collected about 103 bags of dirt, trash and debris in a morning long event and I returned in the afternoon to take the picture posted above. Of course in this picture you don't see all of us wearing our bright vests as we raked, shoveled and gathered weeds and trash from the curb and sidewalk. You also don't get to see the traffic whizzing by. We even had a police escort because Louisiana is often congested.

Events like these are always difficult for me. I concentrated on trying to gather the debris as numerous cars drove by. I had several conversations with folks (good ones, too!) but all the commotion overstimulated me. I really needed to get away for a few minutes, put my ear plugs in and "rest my brain." Since there wasn't a good place to do this, I decided to leave after only a little more than an hour.

I hate having to "shirk my duties" like this but I have learned that if I push myself to finish whatever I'm doing, I have to spend a long time resting. On Saturday I took a nap when I returned home and I was good to go on Sunday. Years ago, I often pushed myself until I ended up having to rest for days. I now know my limits. Oh, I'm certainly not happy about them but I function much better when I listen to my body. I think we all do - brain injury or not.

A quote by Hubert Humphrey helps me here. "It's not what they take away from you that counts. It's what you do with what you have left." There is a lot I can no longer do but I do what I can. I think this is all God asks of any of us.

If you have a brain injury, how do you pace yourself? Do you get angry when you can no longer do what you did before? See above right for commenting instructions or contact me directly at puffer61@gmail.com Due to a computer glitch, I cannot respond here but I read every comment.

I've been a little disappointed that brain injury survivors have not commented here. Being a survivor is lonely and often folks don't understand our challenges. I hoped this blog would be a place where survivors could share their experiences together but it hasn't turned out that way. I know commenting on blogspot is difficult and so I may switch to wordpress, where commenting is easier. I would be interested in your thoughts about this. Please write me at puffer61@gmail.com

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

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.

Children

I married late in life but I never had a burning desire to have children. I always assumed I would have them but I wasn't in any hurry. I loved being around other people's children and I especially liked doing the children's time at church. I remember when I first started doing it, I worried about it which I seem to do about everything that I do for the first time.

My TBI happened three months after my marriage. I was in an induced coma in one hospital while Michael was in another. The other Associate Pastor of the church I served put a notebook in the waiting room for people to sign when they came to visit. I wasn't allowed any visits and this was a way for folks to respond to my accident. I treasure this notebook today and I appreciate seeing the notes from the many people who visited. I must say, I am surprised at the various folks who came to the hospital. Perhaps I'll write a post about that time but today I want to write a little about children.

I can't imagine having children when I was injured. I was sensitive to noise (I still am but it is much better) and the thought of having children playing in the house when I was trying to recover, is unbearable to me. Many brain injury survivors have children and I can't imagine the challenges. I never even thought about adding children to the mix.

I think often folks have a desire to leave part of themselves behind when they die. Having children is one way to do this. I do feel a sense of loss at not having children but I'll have to leave a sense of myself behind in other ways. I do believe that too often, folks use children to give them a sense of self and I imagine this is a challenge for people who do have children.

At Grace Covenant years ago, I volunteered to help in one of the children's classes for two weeks. It wasn't any more chaotic than any other children's' class but I just couldn't take the stimulation. At Circle of Mercy, the children leave worship to play during the sermon. Volunteers help the paid sitter then and I might try it once to see if I can do it. It would be a way to be around a small group of children which may be okay for me. It's another example of trying something to see if it works since having a TBI requires flexibility.

How are you around children after having a TBI? Do you have any children? Feel free to comment here (commenting instructions are above right) but feel free t0 comment directly to me at puffer61@gmail.com I'm unable to respond to your comment here due to technical difficulties but I read every one.

Hike

The top picture is from our hike yesterday at Craggie Pinnacle. We were too late to see the rhododendrons in bloom but it was fun anyway. It was foggy in the beginning so we couldn't see too far into the mountains. Here is a picture of Sparky and me. I'd put pants over my shorts because it was 50 degrees and I wore one of Michael's jackets to keep warm. I was excited because this was the first time I'd taken a hike where I didn't have to take my noon nap. (Jan. 24, 2011)

When we hiked the trail, I found myself getting overstimulated and wanting to put my earplugs in to "rest my brain." (Feb. 4, 2011) I'd forgotten that even though I no longer need this nap, I still get overstimulated. I'd wished that I had brought my ear plugs so that I could have "rested my brain" when we got to the top. I could have taken a picture with me wearing my earplugs! Ah well.

When we got back to our car, I put them in then until we arrived at our picnic spot. We arrived home at about 2 and I was tired. I decided not to take a nap but rather do some reading. Later, I put my ear plugs in for a planned ten minutes but I ended up sleeping for 45 minutes. I guess I still need to work with my over stimulation problem. It does make me angry to have to deal with it.

Do you have over stimulation issues now? How do you manage? See top right for commenting instructions or contact me directly at puffer61@gmail.com

Poor Brain Injury Survivors

I'm on a team of folks working with a man who was homeless but now lives in an apartment. The program is called "Hope to Home" and it consists of folks from various faith communities. It's difficult living in regular housing once one has lived on the streets. The man with whom I am working, has a college degree and has held several jobs. He doesn't need much of the help that others need, so working on his team so far has been easy.

I made it clear that I have no sense of direction so taking him places was not something I could do. He gets food stamps but they have been cut since he is now working more. At our last meeting no one was able to take him to get the supplemental food offered. After being sure he could give me directions to those places, I volunteered.

At the first church we had to wait in a long line of people who needed food. I could feel myself getting overstimulated even though it was early but I've learned when I can push it and decided this was one of those times. Numbers were passed out and my friend was number 34. We were ushered in to the fellowship hall where dozens of food boxes containing milk, meat, canned and boxed food lay on tables. Fresh vegetables were available as well as personal care items and some deserts.

Someone said a prayer and I thought they would begin handing out food since this was why everyone was there. Instead they spent about 30 minutes asking trivia questions about mothers. The person with the correct answer received some flowers. The questions often had wrong answers IE Who was George Washington's mother? Answer: Martha Washington. Several folks around me rolled their eyes. It was clear they had come to pick up the food, not spend 30 minutes answering a stupid quiz just so people who donated a bunch of flowers could feel good about themselves!

As time went on and on and on, I knew I was going to have to leave the room to get out of the stimulation. I went outside, found a shady spot, put in my ear plugs and "rested my brain." After a while my friend came outside and we went on to the next place.

Now as I write this, I'm angry. I know there are many poor people who have brain injuries. I could not have waited two hours in a noisy room for food. I could not have survived living outside on the street. I could not have made it without my disability benefits. Far too many brain injury survivors do not have these things. I guess this means that those of us who have these things, must try and support the survivors who do not.

What sort of financial and other challenges do you have? How can you support other brain injury survivors? See above right for commenting instructions or contact me directly tamara@indylink.org

Shopping

I hate shopping. Even before my brain injury I hated it but at least I could spend several hours going to the various stores in the mall until I found what I was looking for. I would then continue my day by going to my other appointments. Now this is impossible. The lights and sounds drive me crazy and I can only stay for a short time before I must leave to "rest my brain." I needed to get a few things and I've been putting it off since it's so much trouble. Finally yesterday I decided to go to JCPenney which had everything I needed.

I like JCPenney because I can park right outside the door and not have to go into the mall. I've tried going to malls before but my spatial orientation challenges and sensitivity to light and sound makes this too hard. My first purchase was blue jeans. There was music playing and I almost took out my ear plugs which I always carry with me but I decided I would try and manage. Sometimes this is easier then attempting to ignore the stares when people see me wearing ear plugs! After rooming around trying to find the jeans - I always buy the same kind since they're the only ones that seem to fit - I discovered they no longer carry them so I had to try on a few others. This meant more time in the bright light and loud sounds.

After settling on a pair, I moved on to the purses. They only had about a million so I began searching through them. At one point, I was mistaken for an employee because I had several purses strewn on the floor around me trying to see if they would carry what I needed. After settling on one purse from the million, I moved on to the belts. I felt a bit overstimulated but I wanted to get everything done. Again, they had blue, red, silver and every other color you could think of. I wanted a brown belt. Not a brown belt with rhinestones or with a decorated buckle - just a simple brown belt. I was almost ready to leave when I found one. I went to pay for my purchases and the only folks in JCPenney on a week day were all at the register paying. So of course, I had to wait in line.

My next challenge was trying to get out of the store. There's only three floors but I couldn't remember where I had parked. After describing to an employee what was by the door I entered, she gave me directions back to it. I managed to get to the correct floor but I turned the wrong way and ended up at the wrong door. I get lost a lot so I'm used to ending up in the wrong place. I turned around and walked the other way which took me to the correct door. After 1 1/2 hours, I was exhausted.

I recently read a blog post by Chris Glaser titled, "Do Progressive Christians Pray?" (99brattle.blogspot.com) In it he writes, "The Desert Fathers and Mothers believed prayer was not about changing God's mind or heart but about their own transformation." There have been times when I've been really lost - not just lost in a store - but lost driving in a city - when I've issued a plea to God "Oh please help me find my way home again!" Sometimes I even pray before I go somewhere, "Help me not get lost."

I have a brain injury which means I have spatial orientation problems and God cannot take this away. But God can transform my own spirit so I can accept these challenges with grace. God can give me wisdom to go shopping at a time when the store isn't busy. God can also guide me to go only when it is best for me. Of course, this means I have to set limits for myself which can be frustrating.

Not everyone with a brain injury has as much difficulty in stores as I do. Are stores hard for you? What things are difficult for you now? Feel free to comment or email me directly tamara@indylink.org

Presbytery Meeting

The presbytery meeting vote came out the way I had hoped with a vote of 143-99. I made a short statement which turned out to be a 1 1/2 minute sermon. We voted on this same issue two years ago and I spoke then. I was stressed and vowed I would not speak this year because of this. However, when I attended a meeting of those working for it's passage, I discovered no one planned to express my thoughts. So I decided to go through the stress again.

Unlike many brain injury survivors, I am able to do most of the things I did before. I have to do things differently and this does frustrate me. For example, I get overstimulated very easily now. Too much light, sound and things I never thought about before, can overwhelm me. I don't go to malls now except to run into one store that I know how to get to. Spatial orientation (sense of direction) is a huge issue for me and I can't count how many malls I tried going to when I lived in Atlanta but I got lost and/or overstimulated in every one.

At this point, it's important for me to say that everyone with a brain injury is different. Some folks must use a wheel chair, others cannot speak and still others have vision difficulties. Some folks can handle a lot of noise and others don't get lost very often. I remember going to a party for brain injury survivors in Atlanta and others could handle the music. It drove me crazy and I had to keep leaving the room to get out of the noise. It's best to treat everyone who has a brain injury as the individual people we are. Don't assume we are all the same because we are very different. This is important to remember for anyone with a disability. For example, all folks with visual impairments are not alike.

I've always liked to preach. Even now, I enjoy it. When I was an associate pastor in the church, I didn't preach often and it took me forever to write a sermon. Sometimes, I would practice and practice so I could say everything just right. Even though a sermon is not a performance, my performance background helped me immensely. So of course, I practiced my sermon relentlessly. Other preachers told me that with experience it gets easier and one gets into a "groove." I decided to seek another call where I could preach more and have a chance to get into this "groove." I had applied to several other churches and even had a couple of interviews right before my accident. My husband had to field several phone calls from churches interested in me while I was still in the hospital.

So I will never know what it is like to get into a "groove." I'll never know if I was capable of preaching on a regular basis. This is a loss and my little presbytery speech put this to the forefront again. In spite of the stress of my speech, I'm glad I did it. I struggle with what this all means. I think I will speak for certain things, knowing that I'll have to put everything in place in order to do it. For example, I didn't attend the full presbytery meeting because I knew I would be overstimulated. Since driving on the highway is still a challenge, I arranged for someone to take me there. I've always had trouble asking for help but now in order to function, I must do this.

I'm interested in any thoughts you might have. If you are a brain injury survivor, what things are different about you now? Do you grieve your losses? Do you have difficulty asking for help? Even if you're not a survivor, feel free to comment.