Riding the Wave

I love being in the water. Michael and I are planning a trip to the beach in the fall when the hotel rates are cheaper and we can bring Sparky.  When I was in rehab for my brain injury in 1996, the recreation therapist took a couple of us to the Y to swim.  Michael sometimes observed my therapies so he was there.  The therapist said to him, “Wow!  She swims like a fish!”  It was true but at that time I was using a cane; In the water I felt free.

The story of Jesus calming the sea is found in three of the gospels: Mathew 8:22- 27, Mark 4:35-41, Luke 8:22-25. Today I can relate to the Mark passage best.

 “On that day, when evening had come, he said to them, “Let us go across to the other side.” And leaving the crowd behind, they took him with them in the boat just as he was.  Other boats were with him.  A great windstorm arose, and the waves beat into the boat, so that the boat was already being swamped.  But he was in the stern, asleep on the cushion and they woke him up and said to him, “Teacher, do you not care that we are perishing?  He woke up and rebuked the wind, and said to the sea, “Peace! Be still!”  Then the wind ceased, and there was a dead calm.  He said to them, “Why are you afraid?  Have you still no faith?”  And they were filled with great awe and said to one another, “Who the is this, that even the wind and the sea obey him?”

This text says, the “waves beat into the boat” while Mark reads, “the boat was swamped.” Luke reports the boat was filling with water and the disciples were in danger. Since finding out about winning a Louisville Institute grant in December, I’ve been “riding the wave” as this surfer is.

Following the Wall

Photo Credit: Bill Rhodes: see more on  Facebook and Instagram

 

After receiving it back in December, I was excited and raring to go and like this surfer, willing to take on anything. However, as the weeks went by my brain shut off and no ideas came at all. Week after week I could not write or could write only a little  I thought Joyce was frustrated with me but she said she wasn’t frustrated, just sad she couldn’t help me.  I wasn’t riding the wave anymore but rather had fallen off a cliff!

I’ve learned how to catch myself when I feel the darkness coming on. I read, swim or do something mindless.  I’ve always struggled with depression but it is much worse since my brain injury. The waves beat me down more quickly since  many of the neurons in my brain died in the accident and those remaining overload quickly.

So I’m “riding the wave” again now. What happened?  I don’t really know.  I think I pushed myself to write and gave up doing anything else.  I just don’t have the cognitive energy to do this.  Joyce told me most writers only can write for a few hours before they must take a break.  This goes double for me and I’ve learned my lesson. Hopefully I’ll continue to surf as life goes on.  I don’t plan to try to write tomorrow but rather read and visit with a friend in the afternoon. I’ll write again on Thursday. I know where my limits are: I simply must respect  them.

 

 

A New Year

WordPress for Dummies

I finally made the switch to WordPress. It is much easier to comment now so I do hope folks will take advantage of this. One doesn’t need to have a brain injury to comment but I really see this blog as a place where brain injury survivors can share their struggles as well as their joys and get support from each other.  I’m having difficulty figuring out how to add a picture correctly though.  I think this will get better with time.

For this first post on WordPress, I want to share a poem by Jan Richardson from Night Visions: Searching the Shadows of Advent and Christmas.

In the center of ourselves
You placed the power of choosing.
Forgive us the times
We have given that power away,
When we have sold our birthright
For that which does not
Satisfy our souls.
And so in your wisdom
May our yes be truly yes
And our no be truly no,
That we may touch with dignity
And love with integrity
And know the freedom of our choosing all our days.

When I first read this, I thought about how when I lived in Atlanta, I pushed myself way too hard. I chose to do things because I thought that’s what was expected of me. As a result, I often spent days simply laying on the couch “resting my brain.” I didn’t even need to use ear plugs for this because I was so tired, I simply slept. I always bounced back after resting but I did the same thing over and over again.

When I moved to Asheville, NC I decided to not become involved in anything. What happened when I did this? I got bored. “Why am I even bothering to stay here in this world?” I asked myself. “I’m not doing others or God any good at all so I should just leave and do everyone a favor!” However when I was having my better days, I realized doing this would hurt too many folks. Plus it wouldn’t be a good reflection on God for a minister to just check out of life!

So I made the choice to be as involved in my life as I can while being honest with what I’m able to do. I don’t believe God wants me to spend my days exhausted because I pushed myself too hard and got over stimulated. Nor do I believe God wants me to have to rest all the time due to cognitive overload.

You know what? I’m much happier now than I was before. I’m trying new things like singing in the choir at Grace Covenant Presbyterian and I’m taping into my creative side again. I’m taking an intense water aerobics class and I’m trying to write again. So who knows what this New Year will bring. I must say, it is rather exciting.

What sort of things are you looking forward to this year? If you have a brain injury, write about some of your struggles. Let’s see if the commenting part on this system is easier. It really is true that those of us who have brain injuries and other disabilities, need to share our joys and struggles with each other.

Overstimulated? Stressed? Grrrrr

I wish I could keep this quote in my memory!   Especially now.  I’m stressed out, overwhelmed, or something.  I don’t know what the right word is and I guess the truth is, it doesn’t matter.

A few weeks ago, I decided to do more things knowing full well that doing more things means getting overwhelmed pretty easily.  I have got to stop worrying about what people think! 

An example of this is, I really love singing in the choir at Grace Covenant Presbyterian but it is hard to sit in front of the whole church the way we do.  I feel like everyone is looking at my every move!  The choir looks so good wearing robes and carrying black folders for holding the music. We have a processional in and then one as we leave winding back up the side aisles to sing with the congregation. 

I learned pretty quickly that I simply cannot handle the stimulation of standing in the narthex before the processional.  After the noise of being in the choir room as everyone puts on their robes and practicing, it was just too much.  So I don’t process in but enter from the back.  It works really well for me because I can take a few minutes sitting in a room alone “resting my brain.”

It’s difficult for me to hold the black folder because of my arthritic hand.  It’s much less painful for me to hold the anthem without the folder.  However, I can’t help worrying what people will think to see this lone choir member holder her music without the folder.  I decided yesterday that I have to not care what people think and just do what I have to do to survive. 

Yes, this has been a huge issue for me as I try to be involved more.  I can do a whole lot but I have to do things differently.  I know people may wonder why I do something a certain way but it is causing me to use too many of the nerurons I have left in my brain to worry so much. I know what I have to do and if someone wants to ask me about it, they can.  I’m trying so hard not to spend time worrying what people think about me.  It takes too much energy and I don’t have any to spare!

So I did today what I always do when I’m stressed out.  I swam laps at the Y.  At first, I had the whole pool to myself.  It’s actually funny because I always worry about what the lifegaurd thinks of my sroke so I didn’t want to swim in the lane closest to him. 

I made a joke about this and to my shock, he said “Well, I don’t have anything else to do so I always look at people’s strokes!”  I told him that if he had any comments about my stroke, to tell  me because I really wanted to improve.

He then asked, “Are you sure?  I’ve commented to people about their strokes and they have gotten mad at me so I’ve learned not to comment.”  I assured him that I really appreciated his suggestions.  He gave me some wonderful tips on my kick and even showed me how to practice it.  It got me thinking about how much I really want some coaching on my stroke.  I checked at the front desk for some information on lessons.So this is my new project.  I do have a good stroke but I know it could be better.

So in addition to my singing voice, I’m going to work on my swimming.  I really like learning and I haven’t been doing enough of it mainly because I learn differently now and I always worry about what people think!  It’s funny but since I stopped taking the medications I took for migrain headaches, I can think clearer now and I have more evergy.  This allows me to learn new things and to enjoy what is before me. 

Now if I could only stop worrying what people think of me! 

Church

I have a birthday tomorrow and birthdays always drive me to reflect on my life.  My reflections this year are about all the different churches in which I’ve been a part.  I grew up Methodist, directed a small church choir at a Disciples of Christ Church, and ended up joining a huge Presbyterian Church (Village Presbyterian) in Kansas City. (6000+ members) 

I joined this church because I had played violin there for numerous music programs and I liked the church’s social justice stance on issues.  In fact this is where I became involved in the Peacemaking program and other Presbyterian social justice programs.  I look back on this now with wonder.  How did I ever survive in a church that big?  I even was what is called “under care” there when I studied to be a minister.  This means the church supports and encourages you as you go through the ordination process.

My first call was at a church in Atlanta in an upper middle class, white neighborhood.  I was only there for three years before my automobile accident.  Three years is not very long but I was searching for another call when I sustained my brain injury.  I knew my accident was serious because I had to learn how to eat, walk, use my hands, keep my balance and do cognitive things like read,  all over again.  However it wasn’t even in my realm of possibility that I would never serve a church again.  I figured I just needed more time.

So I first dived into volunteering at the Open Door Community which is a residential Christian community sort of like a Catholic Worker House that served folks who are living homeless as well as those in prison.  That didn’t work so I tried volunteering at a local Hospice.  That didn’t work so I walked into the Chaplains office at a retirement community and asked if they could use a volunteer.  The lead Chaplain had time to give me a tour and said he could use me.  He is a very busy man and I don’t know how I lucked out meeting him that day, but I did. Finally, something that worked! 

This is so often how it is with brain injury survivors.  It’s a “trial and error”  (see post 8/19/11)  sort of thing for we often don’t fit into our prescribed world anymore.  In fact, all people with disabilities don’t fit into this world and it can be a very lonely place.  I am awed by the strenghth and perseverance of folks who have disabilities.  The world is not made for us so we have to carve out a place. 

So while volunteering there, I served on a couple of Presbytery committees as well as a couple of committees at the church I was attending (Oakhurst Presbyterian, a multi racial congregation). I was involved in several projects that came up and led worship, at times even preaching at various places.  Quite frequently my brain would just do what I call “shut down.”  This meant I couldn’t focus or do anything at all but rest.  So I often spent days laying on the sofa with no stimulation around me at all.  I always bounced back and returned to my schedule again.  Back and forth this went.  

It was starting to wear on me and I began to realize that I would never serve a church again as a minister.  About that time, my husband Michael took a job in Asheville, N.C. which meant moving.  For anyone who has sustained a brain injury a change in surroundings is very, very difficult.  We don’t do well with unexpected or unknown environments. I decided the best thing for me to do was to stop all involvement in everything and just become familiar with Asheville

I’d heard about Circle of Mercy congregation when I was in Atlanta so I decided to become part of this progressive church even though it wasn’t Presbyterian.  It meets on Sunday evenings so I could still attend a Presbyterian Church in the morning.  Since I purposely wasn’t going to get involved at either place and planned to just attend church, going to two wasn’t a burden.  Much of my energy went to figuring out my new city, new schedule and finding volunteer work.  Again, I tried volunteering at two different nursing homes and doing some volunteer clowning  but discovered this didn’t work for me so I had to try something else.

After a while I did join a committee at Grace and became more involved there but it was limited.  I also became part of the Pastoral Care Team at Circle of Mercy.  Being involved in both churches peaked my interest in ideas surrounding ordination, sacraments, justice ministry and worship services since the two churches have differing views in all these areas.  It’s pushing me to think about what I believe and not what a church tells me to believe.  However, both churches are very open and I don’t feel pressure from either one to believe a certain way.  For this I am grateful.

Someone with a brain injury needs to do repetitive  and steady things.  I have tried this but I was bored to tears.  My neurologist sympathized with my feelings and supports my idea of trying to be involved in more ministerial type things.   When I use the word “ministerial” I mean using the parts of me that I used when I was a pastor – not trying to actualy be one.  However, I must set limits and this is very hard for me.  This idea isn’t going to work and I’m going to be stressed out like I was in Atlanta if I don’t set these limits.

I’m not a pastor of either church and I don’t want to be. However, I can’t help regretting this greatly.  I liked being a pastor! I must say, it is nice not having all the responsibilities and pressures of one. I don’t have to worry about what I say etc. since I’m not getting paid by anyone.   I’m sort of a “freelance pastor” a little like when I was a freelance violinist/violist all those years ago!

When I look back, I see how far I’ve come.  I still worry about what people think about me but I’m getting to the point where I don’t care.  I know what I’m doing and if someone wants to talk to me about this, they can.  If they don’t, then it is their problem and not mine.  (This is much easier to write than to actualy believe!) 

    

"All or Nothing"

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

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

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

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

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

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.