Publishing Woes

brainAn 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.
manuscript 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.

Xanax?

I had an appointment with Dr LeMauviel, my primary care physician, yesterday for a blood test to make sure the thyroid medication I’m taking is the correct strength. The appointment usually takes all of 10 minutes but this time she wanted to talk to me. To my chagrin, I waited for an hour for she was running late. I couldn’t help asking myself, “Who does she think she is, keeping me waiting like this?”

Migraine Medication

Migraine Medication

However, I gave her the benefit of the doubt because I like her immensely. Years ago in Atlanta I had tried many migraine preventatives for my post-traumatic migraines which are common after brain injury. The side effects were unbearable until my neurologist there suggested an unconventional preventative which worked. A couple of years ago, Dr. LeMauviel pointed out that this preventative medication was raising my heart rate and wasn’t good for my body. She suggested I try alternative therapies which I did and they worked.

So at my appointment yesterday, the first thing she said to me was, “I didn’t get your records from your hospitalization in Canada.” “Oops,” I thought. “She remembered.” I had told her about the hospitalization when I had my physical back in the fall and she asked me to have them send her my records. The truth is, there wasn’t anything in the records since it was a brain injury meltdown although folks there didn’t know that. They ran two cat scans and both were normal.

LeMauviel is a good doctor. In spite of being behind schedule, she took the time to listen to me and then suggested I have some medication on hand in case I ever get into another situation like that. I balked at this but she wrote me a prescription for Alprazolam anyway which I planned not to fill.

However, the person checking me out wanted to set up an appointment in one month so LeMauviel could check to see how the medication worked. She told me I could always cancel it which I had every intention of doing. However, this afternoon I took out my husband Michael’s copy of the DR guide to Prescription Drugs to check it out.. It turns out it is generic for Xanax which is a fairly strong tranquilizer used for short term relief of anxiety.

As much as I dislike taking medication and am very aware we live in a pill popping society, I’m going to try it. If I decide to keep some on hand I will use it very sparingly in the hopes I don’t go through my Canadian experience again. One thing I have learned about this world of brain injury is, I have to try many different things for each person is different and nothing works for everyone. It’s a good thing I’m creative and willing to try new things!

 

Worry wart

worryI am such a worry wart!  I’ve been a worry wart my whole life.  I don’t want to even think about all the joy worry has stolen from my life.  When I played violin, I remember spending hours and hours practicing until I got a passage just right.  However when the time came for me to perform the piece, I was often too busy worrying about the passage to actually enjoy playing the piece!  Sometimes I wish I could go back to the past to those days and try not worry so much.  However,all I can do now, is not let worry steal any more of my life.

I’ve been worrying so intensely about things I didn’t even notice the nest of finches on my front porch.  My husband Michael has been in deep thought as well so it was sort of a surprise when we noticed yesterday the nest contained five little birds.  They are almost ready to fledge which means I missed watching the mother put food in their beaks as they grew.  I’m mad at myself for missing this because I could have looked right out my front window and watched.  So again, worry has stolen me seeing an amazing part of God’s creation.

While my tendency toward worry doesn’t have anything whatsoever to do with my brain injury, all my worrying wears me out much faster now than before.  I’m sad about missing the finches but I don’t want to miss anything else God sends my way.  I can’t help remembering the words of Jesus in Matthew 6:31-33 (The Inclusive Bible):

“Stop worrying, then, over questions such as ‘What are we to eat,’ or ‘what are we to drink’ or ‘what are we to wear?’  Those without faith are always running after those things.  God knows everything you need. Seek first God’s reign, and God’s justice, and all these things will be given to you besides.”

Thinking about how I can help bring God’s justice and reign to this world is certainly more valuable than letting worry steal joy from my life.  I think I’d better go watch those finches on my front porch before they fly away.

Advent

Michael and I bought a Christmas tree yesterday from a lot close to our house.  After seeing the picture on the left, I realize I need to trim some of its branches.  On second thought, I’ll probably leave it as is to work on my perfectionism a bit!

I’ve always hated the Christmas season.  This year a couple of local stores opened on Thanksgiving night so that folks could begin there Christmas shopping! I hate shopping for anything and Christmas is the worst.  This year I’ve decided to get all the adults presents from an Alternative Gift market at my church.  I haven’t decided exactly what I’m going to get yet but I’m going to choose from Homeward Bound of Asheville, Veteran’s Restoration Quarters, Mark Hare, PCUSA Missionary as well as several others.

I have worried about my bare tree as well.  My husband, Michael, is really really swamped at work now so decorating it falls on me.  However as I was doing my Advent devotional this morning, I thought about waiting for a bit and leaving it bear.  After all, Advent is all about waiting. 

The devotional I’m using this year is Preparing for Christmas by Richard Rohr. He writes in his introduction, “Jesus identified his own message with what he called the coming of the ‘reign of God’ or the ‘kingdom of God,’ whereas we had often settled for the sweet coming of a baby who asked little of us in terms of surrender, encounter, mutuality or any studying of the Scriptures or the actual teaching of Jesus.  Sentimentality, defined as trumped-up emotions, can be an avoiding of and substitute for an actual relationship, as we see in our human relationships, too.”

Yesterday when we went to the Christmas tree lot, I saw the shining eyes of two little children as they took in the surprising and wonderful sights around them.  This is what Advent and Christmas is about.  As Mark Ramsey said in his sermon yesterday, “Advent is a yearly reminder that God is able to surprise us.  Perhaps we ought to think of church as training in the skills required for following this living, surprising, interrupting God!”

So with Richard Rohr’s devotional in hand, I look forward to being surprised this Advent season.

"Overwhelming"

The title for Mark Ramsey’s sermon at Grace Covenant Presbyterian Church yesterday morning was “overwhelming.” It definitely got my attention since I have such a problem with being overwhelmed.  This is really an issue for folks who are brain injury survivors. Over stimulation, cognitive overload, and mental fatigue are just a few words which describe our feeling of being overwhelmed.

This picture was printed in the bulletin and I loved the Call to Worship.  I enter the sanctuary from behind the organ to avoid the overwhelming situation when I join the processional with the choir so I usually miss this part of the service.  However, for some reason yesterday I stood back on the stairs where I could hear it.

O God, open us to the powerful winds of your Spirit.
Open our eyes to the wonders of your creation.
Open our senses to the smells of new life.
Open our ears to the words of justice and truth.
Open our mouths to the taste of freedom and love.
Open our arms to the embrace of peace.

I am trying to be open to the winds of God’s Spirit but it is hard. In the past I thought being open to the Spirit meant getting involved in everything that came my way. This didn’t work.  It only stressed me out and I wasn’t good to anyone especially to God!  So when I moved to Asheville, I regrouped and didn’t get involved in much of anything.  What happened?  I got bored.

Now I’m trying to balance things out. I’m beginning to think that folks stay busy because they are afraid to be seized by the Spirit.  It’s easier to say “yes” to everything than it is to discern if something is what God is calling us to do.  I think this saying “yes” allows us to feel important.  But we miss out on so much of God’s world when we do this!

 I’ll never forget the hours I spent watching those baby robins hatch and grow until they were big enough to leave the nest. (see 5/13/12 post) I stopped what I had to do and watched. I opened my arms to God’s embrace.

Mark said something in his sermon yesterday that made sense to me. “If we are going to do anything about the problems that beset us, we have to confront the problems honestly.  During an age of overwhelmedness, however, it is difficult to look at things honestly.”

Sixteen years after sustaining my brain injury, I’m finally looking at things honestly.  I’m no longer pretending I remember someone’s name when I don’t, even after hearing it 125 times!  I’m no longer expecting to know my way when I’m going somewhere for the first time.  In fact,  I don’t even expect to know my way after going there hundreds of times.  It doesn’t mean I’m stupid.  It only means my brain was injured.  It’s who I am now and I can’t be someone I’m not, just to fit in.

I loved the way Mark referred to this past Sunday which was the  “Reign of Christ ” Sunday.  He said, “Here, at the end of the church’s year, we have a Sunday which we call the ‘Reign of Christ.’ Whether we can see it or NOT – we’re supposed to celebrate “the Reign of Christ.'” 

“Yeah right”, I wanted to shout. “Where in the world is Christ now?  People don’t have any where to live and it’s cold outside!  I’m tired of getting lost everywhere I go!  I want to work and earn my keep just like everyone else in this world!  And why are there so many people who have brain injuries who can barely get by on what little Social Security benefits they get?”  I look around and it doesn’t seem like Christ reigns at all.

Mark pointed out that the book of Revelation is a story that arises out of a troubled church.  “You can almost see them there – a little band of Christians, surrounded in the pagan cities.  They seemed so small, so overwhelmed…Where on earth might one find HOPE for the future in such circumstances?” He reminded us that Revelation is known for its “sustained outburst of exuberant joy and praise.  The vision begins, not in despair – but in doxology, in praise, in cadences that scholars believe were derived in great part from some of the hymns of the early church.”

He tells about the Wesley brothers and how they lived in the mid-18th century.  “The gin trade had led to huge problems with alcoholism….Child labor was the scourge of the land.  There was vast social dislocation and chaos.  Things seemed overwhelming.”  Yet in spite of this, they wrote some of our most beloved hymns such as “O For a Thousand Tongues to Sing, Hark the Herald Angels Sing, and Love Divine, All Loves Excelling.”

Mark suggests “if we really want to face our problems squarely, if we really want to stride into this new emerging world with confidence, the best thing we could do…is to sing.  Against all odds, when we join our voices together in some great hymn of praise, then you know – in the very depths of your being – that Jesus Christ reigns, that he shall rule until all things have been put under his feet, that the enemies of God will ultimately be defeated, that good will have the last word over evil, and tht all shall be well.”

Singing and listening to music touches a place deep in my soul.  I really cannot explain it but every time I sing, play or listen to music,  I leave my body and spend time with God.  I’ve been listening to classical music every day for this purpose.  Today I listened to Bloch’s Baal Shem Suite for violin and piano.  The first movement is Vidui (Contrition) which has a meditative quality.  When I hear it (and when I played it all those years ago) it felt like I was approaching God quietly, gently.

The second movement is Nigun (Improvisation) and that is where the music really soars.  Bloch expresses outgoing and uninhibited emotions here. When I listen, my spirit cries out to God “Why is there so much pain everywhere?  Where are You?  Don’t you care?”  Finally comes the third movement, Simchas Torah (Rejoicing). It’s as if God says to my spirit, “It’s okay.  I know it’s difficult some times but I am the center of all being.  Just hang on a little longer and rejoice in my creation!”    When I hear it (and when I played it) I felt God’s joy and my own spirit sang.

John Wesley and the other great hymn writers felt it.  Ernest Bloch felt it.  When I listen, sing or play their music I feel it too.  Mark ends his sermon with these words: “Praise…is how we were created to live, even in the most unlikely times and places.  You cannot know that…unless you live just that way.  And then, you experience an overwhelming, utterly hopeful way to live….even to the end of the world…..Amen”        

Overwhelmed again

I found this poster on Facebook and I fell in love with it. This is why I love Isaiah 43:18,19 so much. “Do not remember the former things, or consider the things of old. I am about to do a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.”

It seems I always go back to this verse whenever I’m going through change. When I stopped being an Associate Pastor, I thought about these words. Each time I began another volunteer position in Atlanta and in Asheville, this passage came to mind.

The quotation on the poster along with Isaiah’s words touches me now. I’m really trying to do more things but it’s hard because it doesn’t take much for me to become overwhelmed. I spoke with my cognitive therapist on the phone yesterday and when I first began talking to her, I sounded almost manic. I was having difficulty slowing my thoughts down.

She reminded me of something she told me back in March of 2011. Anxiety and stress produces a chemical response in my body that actually can impair my cognition. She said back then that I could counteract this by practicing mindfulness. I shared with her how much listening to classical music seems to calm me down and help me get out of that chemical response. She suggested I do this every day and see how it works for me.

So I do have the power to say this is not how my life is going to end. I’m not going to spend it stressed out and overwhelmed. As I continue to be involved in more things now, I’m going to take time every day to listen to music. Today I listened to violin pieces y Ernest Bloch. Perhaps God is doing a new thing for me. Only time will tell.

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!