An experience happened to me this week that reminded me of the challenges of having a brain injury. I read an article run in the New York Times years ago this week. I shared it on Facebook with the following doctor’s quote lifted out. “People hold on to hope that just as when they survived the crash and they had this miraculous recovery, that they will overcome these challenges that other people may not in this miraculous way. That’s not going to happen.”
For me it isn’t so much overcoming my challenges. It’s that I remember what I was able to do before so easily and it’s not easy now. As a result, I often say I’m going to do something without remembering how stressful it is for me to get it done. I might be able to accomplish the task but it means dropping everything else in my life. After twenty years, I’m realizing few things are pressing enough for me to make this sacrifice.
For example my book memoir with some theological reflection is ready for the publishing stage. I could not have accomplished this without Joyce Hollyday’s help. Yes I wrote much of it but Joyce added to it and edited it in a way that makes organizational and theological sense. We discussed the theological pieces but she actually wrote them with a tiny bit of input from me.
Thinking theologically is very difficult for a brain injury survivor. This involves drawing many pieces together in one’s mind to come up with a clear idea, which is considered an “executive function”. Due to my frontal lobe injury, this is now very difficult if not impossible to do. Theological reflection also is hard due to my mental flexibility, cognitive overload, and cognitive fatigue issues.
In the process of writing the book, Joyce and I did a dance with the theological pieces. I wanted to write them and my old way of being was to do this with no problem. I often told Joyce I would write something but after trying, I couldn’t come up with anything. I didn’t want to admit that and I think this was hard for Joyce. It didn’t happen all at once but slowly, I realized I wasn’t going to be able to write those pieces so I asked her to write them.
The same thing happened with Bill Gaventa’a request for a one page summary of the book. He is attending a conference next week and needed to have something available for folks to read. My old self wanted to write it but Joyce gently reminded me of the speed of my writing. It needed to be written quickly so she put it together.
I asked her if my contact information should be with hers on top. She hesitated and explained she knew the publishing process better than I. Then she told me when Bill asked for a copy of the book so he could write the forward, I sent him an old version so that’s what he read. Joyce sent him the newer version which he read while on a plane.
In the publishing world, mistakes like that cannot be made. Even after twenty years, it is hard to admit that I cannot do some things on my own. I’m getting much better with that realization but it still is a challenge.
I’m doing it again. I’m overwhelmed with too many thoughts about too many things. I have to learn that I cannot be involved in as much now or when I get involved, I can’t expect to “save the world.” God doesn’t expect this of me but rather to do only what I can. I don’t have to do it all.
I remember at a session with my cognitive therapist, she reminded me that sometimes I just have to say to myself loud and clear, “stop.” Right now many ideas and thoughts are darting through my mind about the Occupy movement here in Asheville and I must realize that it is not a good environment for someone who has a brain injury. I need structure and it is very unstructured. I can choose to leave it but I’m not ready to do this yet. I am in some discussions with folks in the movement about this so hopefully something will come out if them. I do need to stop thinking about it so much. It only stresses me out which makes it difficult for me to function.
The other thing I need to do is set boundaries. I have an Occupy folder so I can put things in there, close it and forget about it. As I was writing this post, someone from Occupy returned my call. There is a Facebook page for the movement that contains a lot of drama. I’m on it a lot since I’ve not been able to do a whole lot else. The person understood my concerns and seems to know many folks in the movement. I think he can help me plug in.
My conversation with him reminded me of another one I had with someone else really involved in the movement. I came away from that one feeling as I feel now. There are some good organizers in the group and they’re staying out of all the drama that is Occupy Asheville. I need to stop thinking about the drama and just get down to business. I’ll be a lot happier.
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.