Summer Institute II

I’ve been listening to the tapes I made of the 2014 Summer Institute on Theology and Disability back in June. It is almost impossible for me to take notes and listen to a lecture or presentation at the same time due to my brain’s inability to divide its attention which is why I tape them. It takes quite a bit of time going back through the tapes to take notes since I have to pause the tape in order to do this. I can’t imagine going to school now for it would take me forever to earn a degree!

Attendees who were Presbyterian or from another Reformed body.

Attendees who were Presbyterian or from other Reformed bodies.

I so enjoyed being around others involved in the disability community for we speak the same language. The Institute values the experiences and opinions of people living with a disability which isn’t the case back in the “real world.” After every speaker, there was a time for questions. There are the usual academic questions which one gets in a seminary classroom, sometimes asked by people who have disabilities and are serving as ministers in a faith community.

However, what I really liked about this time, were the questions from folks who have difficulty speaking due to their disability. They often spoke slowly and with great care. One of the challenges I have due to my TBI, is concentration. Some of the neurons in my brain were destroyed in the accident so the remaining ones, must do double duty. As a result, concentrating on something for an extended period of time, wears me out.

Here the issue of different challenges for folks who have different disabilities, clashed. I need someone to speak clearly so it doesn’t take a lot of concentration for me to understand them. Someone who has a disability which impairs their speech must speak slowly which I imagine is hard to do. However, it takes real concentration for me which causes cognitive overload. In our regular lives, people are too busy to take the time to listen and understand so I appreciated that time was allowed for this despite my cognitive overload.

What I really liked about the Institute is, everyone knew there are differences in disabilities. My challenges are different from someone else’s and the important thing is to take the time to really listen and understand one another. This is something those of us who have disabilities can teach the rest of the world, if they would only pay attention to us.

Challenges

I know I have fewer neurons in my brain now so it takes much less to wear me out. Perhaps I got too excited these past few days and have tried to do too much.  In any case, it is time for me to regroup. 

I loved the choir rehearsal Wednesday night.  My old “perfectionism” got in the way though.  Why do I always feel like I have to do everything just right?  Shoot, it was my first rehearsal and it doesn’t matter if I hit some clinkers.  Well, I didn’t hit many clinkers but I’m always so self-conscious and get down on myself too easily.  I haven’t sung in a choir in over 20 years so of course I’m going to be rusty!

It’s difficult to see what the picture at left is but it shows my files on disability and brain injury.  I went through my files this week and I’m trying to organize them. In order to get them out of way, I simply put them on a shelf in my bedroom and I’ll deal with them later. I did, however, look through them to find my information from a class called “brain group” that I took in rehab.  I know my graphs and such are really simplistic but I really like having a understanding of what happened to me.

My whole brain bounced around in the accident so the damage isn’t in a particular lobe but rather all of the lobes.  Everyone has different challenges since every brain injury is different.  It seems many of my challenges come from damages to the frontal lobe or what is called “the boss.”  Organizing and planing happens here which are definitely my weaknesses.  

In fact, lately I may be trying to do too much organizing, planning, reasoning and concentrating which all come from that lobe.  I’ve been trying to do some Scriptural study and got interested in finding a progressive way to view Paul.  I emailed folks who might know and ended up getting some good book ideas.  In addition, I want to improve my singing so I’ve been trying to figure out how to practice.

I’ve been doing too much organizing and concentrating which means I must “rest my brain.”  I can do this in several ways but one way is to do something fun and relaxing.  I decided to burn some incense, close my eyes and listen to a recording I have of Poeme mystique, a piece for violin and piano written in 1924 by Ernest Block. 

I love this piece.  I played it for a recital for my Master’s degree in Violin Performance years ago.  I read the liner notes today which said, “The inspiration for the Poeme was an unusual dream that he had after an intense period of crisis and illness.  The dream was emotionally charged, unreal and ecstatic.”  This explains why I have always been able to relate to this piece.  I’m not in crisis now but it is not an easy time.  The liner notes continue, “This is a most ‘uncerebral’ composition.  In our day and time this work has made a comeback – being played more often recently perhaps as an antidote to our disturbed epoch.” 

So I’m going to continue doing what I’m doing but take more breaks when I do.  I may not be able to do this but I want to try.

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.

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.

Random Thoughts

I swim laps at the Y as well as take an intensive water aerobics class. This morning I was going to take the class but when I got to the Y, I decided to swim laps instead. I have a lot on my mind and my body needed to do some hard swimming. Plus, I didn’t want to talk to anyone or worry about hitting someone accidentally as happens in the class. I jumped in my lane and began saying my mantra as I swam: “God is here. God is here.” (see Feb. 16 ) I actually couldn’t remember why I had that mantra so I had to look back at my blog entries until I found the story buried in my post on disease. I need to figure out a way to keep track of where I write things since I often cannot remember the stories!

There is a television set in the locker room which drives me crazy since I cannot filter out noise (see May 9). Why do people feel they always need to have a television on? I never watch T.V. at home. We have one to watch DVDs on but right now, we have a picture leaning on it. We haven’t hung it on the wall yet so now it serves as a shield for our T.V. Whenever we want to watch a DVD we simply move the picture aside. Frankly, I like the looks of the picture better that the T.V screen!

I cannot carry on a conversation with someone with the T.V. noise in the background. When I visit someone in a nursing home or even their homes, I always have to ask them to turn it off because I can”t concentrate on what they are saying when it is on. I understand people who use hearing aids have the same problem. And it seems today T.V.’s are every where. There is even one in the post office so folks who wait in line have something with which to pay attention. I wonder when people have become afraid of their own thoughts?

I drove somewhere new today which meant I needed to use my GPS. I always like to have some idea of where I’m going so I don’t rely completely on it. Nevertheless, I become really spacey when I’m going to a new place. At least I’m prepared for it now so I kept telling myself, “Okay, remember you’re going to feel out-of-sorts until you find the place but you’ll find it so relax.” Fortunately I didn’t have a specific time when I had to arrive which took some stress off.

Dividing my Attention

Before becoming a brain injury survivor, I never realized how difficult it is to filter out noise. When I’m in a room with many people talking and I’m trying to carry on a conversation with someone, I must be able to block out all the other voices. My brain was injured in such a way, I’m unable to do this now. I hear a blur of voices and am not able to hear the person trying to talk to me. I’ve learned to position myself in a room where I am in a corner and not in the middle of the room.

This sounds like a small thing but it’s amazing the number of events I must attend where there is a large group of people talking all at once. My former church had a fellowship hall where folks gathered to talk after worship and I could never go there. At the time I had to take a nap after worship (see 1/24/11) so I couldn’t go there anyway. I try to avoid these settings but sometimes it’s just not possible.

Last Saturday my husband, Michael, was invited to a birthday gathering for a woman he knows. About 10 of us met for horsdoeuvres and jazz music at a local restaurant. It was a low key affair and I really wanted to attend. At first, the band played quietly in the background but even quietly was too loud for me. We sat at one long table and I had difficulty talking to those who talked to me because of the music and the other people talking at the far end of the table.

The music got louder so folks could dance but I can’t stay in a situation like that for very long. I didn’t see a place outside where I could sit quietly with my ear plugs in to rest my brain. We had to leave after 1 1/2 hours because I couldn’t take it much longer. I felt bad since I knew Michael could have stayed longer and was having good conversations. I still don’t know if I made the right decision in attending that night.

Even after all these years, trying to be active living with a brain injury is a challenge. I have to make choices and sometimes I’m not sure if I’ve made the right one! I guess I’m glad I have a choice since so many brain inury survivors do not.

If you are a brain injury survivor, how do you try and be active? How do you manage the many challenges? See above right for commenting instructions or contact me directly at tamara@indylink.org

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.