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.

Exaggerated Startle

I was sitting in my car today in a grocery store parking lot looking at my Android. I'm afraid I've become a little addicted to using that thing. This time I was checking my various groups on Facebook to see if there was a message for me. Suddenly, there was a knock on my car window and I jumped so much, I almost hit the roof! I looked at them through the window and I couldn't focus on who they were. When I opened the window, the couple apologized. They pointed to my bumper sticker and asked me where I got it.


This experience reminded me of the early days in my recovery. I couldn't sit in the front seat of a car for a long time after my car wreck because that's where I sat during the accident. Even though I have no memory of a car hitting us on the passenger side, my body remembers. In the beginning, I jumped at every tire screech or car driving too close to me. I remember literally shouting or screaming when Michael turned left and I thought we would be hit again. Of course there was always plenty of time for us to make the turn but my body didn't think so. Michael kept telling me it made it worse when I cried out because then he thought we might really be in danger! I tried not to do it but it took me a while before I stopped.

I understand that folks who haven't gone through an experience like mine will occasionally become startled. They may even jump when someone knocks on their car door window at an unexpected time. I think it happens to me more frequently than others but it is much, much better now. It's been a long struggle though.

Authority

I have a subscription to The Sun magazine. (http://www.thesunmagazine.org/) It contains no advertisements and the stories and photography are wonderful. The magazine always contains a section called "Readers Write" where people submit a short writing about a certain topic. Often the stories affect me greatly and this month was no different. I've included one by Thom Kilts from the November issue below.

"Growing up in the projects, I saw two kinds of authority in the neighborhood. There was the authority of the gangs maintained through violence and intimidation. And there was the quiet authority of the monks at a little Tibetan Buddhist monastery down the street. The monks lived with the same poverty that I did and (I learned later) had witnessed more violence and experienced more injustice than I could dream of, but they had a stillness, a calm, an inner authority that told you not to mess with them.

Wanting the same authority for myself, I stayed out of gangs and became the first person in my family to attend college. I traveled to India, Nepal, and Tibet and was fortunate enough to have an audience with the Dalai Lama himself. After I returned to the States, I went to graduate school in Buddhist studies and then, through residency programs in clinical pastoral education (CPE), to becoming one of the first Buddhist CPE supervisors. Eventually I landed a job as director of spiritual care at a hospital,but I still felt as though I lacked true authority, the kind I'd seen in the monks in my neighborhood.

One day I began to have severe back trouble. It progressed until my entire body would give out and I was semi-paralyzed. There were times when I would vomit blood or lose the feeling in my feet. I might go from teaching a class to staring up at my students as they stood over me on the floor. I went in for surgery, but it didn't help. I had to take prescription narcotics for the chronic pain and suffered the indignity of suspicious looks as I filled prescriptions for massive amounts of painkillers. All the while my condition continued to get worse.I descended into depression and hopelessness and was no longer able to work. I went on long-term disability and gave up my job. The insurance company turned my claim into a drawn-out lawsuit.

So here I am, just an unemployed sick person wondering how the bills will get paid, tasting the bitterness of poverty once again. My mind returns to those monks who lived down the street when I was a kid. They had an inner authority that shone through, a dignity that allowed them to face hardship with a smile. I wonder if I will ever find that source of authority myself."

The issue of authority is a fairly large one in CPE. Chaplains learn about their own authority and what it means to have this authority as a minister. Although I haven't lost as much as Kilts has, I could relate to his story. What kind of authority do I now have? I can no longer work as hard or remember things as I used to. I want to try and obtain "the inner authority that shone through" the monks as they did their work. This kind of inner authority only comes from above. As I wait this Advent, I will wait for this inner dignity that comes only from God.

Advent

The first day of Advent was this past Sunday. I guess I'm a scrooge because I don't like this season. There's too much fake happiness and high expectations. There is too much tinsel and Holiday madness. It's difficult for me to find God in December which is why I don't like this month at all. To top it off, I don't even like snow!

But this Christmas season is going to be different. Worship at Grace Covenant Presbyterian Church put me in the right mood. We didn't sing bright, catchy Christmas carols but rather the Advent hymns of expectation. I pondered a quote by Dietrich Bonhoeffer printed on the worship bulletin. "A prison cell, in which one waits, hopes...and is completely dependent on the fact that the door of freedom has to be opened from the outside, is not a bad picture of Advent." I read it over and over again trying to understand for it seemed rather odd.

Pictures of the wise men, Mary and Joseph or the baby Jesus are often on bulletin covers this time of year. Instead, this order of worship had the picture of the clock printed above. What does a clock have to do with this season, I thought?

In Mark Ramsey's sermon that morning he mentioned several questions that Jesus answered: questions about the resurrection and paying taxes being among them. "But when they asked him the Advent question - 'When is God coming? What time is it really?' Jesus said, 'I don't know.'" He continued, "When is the justice? When is the fairness? When is the peace? When is the food that fills every stomach? When is the water that quenches every thirst? When...is the joy? How do we tell time in God's world? And Jesus said: 'I don't know.'"

However, we do know that God will come in surprising and strange ways. Mark said, "There is hope. There is tomorrow. There is good coming from the hand and the will and the heart of God! There will be justice. There will be acceptance and love. Prejudice will be washed downstream. There will be food on every table and children will live in safety and delight! God will come!"

So when is Advent? How do we tell time in God's world? Jesus has said, "I can't tell you how...God is full of surprises." This gives me hope. I can't do all I did before my TBI but God will come in unexpected ways. So this Advent, I'm going to be watchful and wait for my prison cell to be opened. And it will. Who knows what the future holds? This Advent, I will watch with great expectation.

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

Memory

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

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

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

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

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

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

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.