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.

Brainstormers

On Wednesday I had to go to several places on the way to somewhere else.  Doing this always stresses me out but I figured it would be okay.  First, I took Sparky to the doggie day care.  On the door was a note saying the day care was going to move to a new location on March 31.  “Uh oh,” I thought.  “Now I’m going to have to figure out how to get there.”  This may not be a problem for most folks but it is a huge problem for me.

I followed my GPS to get to my next activity which was working in the vegetable garden at Grace Covenant Presbyterian Church.  I knew I was running late so I was surprised when no one was there.  I checked my Android and sure enough it had been cancelled due to the leader’s unexpected emergency.  This worked out well for me since I was still concerned about finding the new doggie day care.  However, it did throw me off a bit due to my difficulties with flexibility

I went home and tried to find the new location on a map but I couldn’t find it.  The person at the daycare said she would write the directions out for me and put it in my file to get later so I spent some time getting ready for my afternoon appointment.  I still wasn’t used to this appointment’s location so I felt my stress level go up.  I found the location just fine, but I worried way too much about it.  I was wasting what neurones I have left by doing this.  I need to find a way to stop my stress level from exploding especially since little things stress me out.

I then had to pick up some dog food at a place near by.  I had put the address in wrong in the GPS and I ended up in the wrong place.  I felt my emotions getting a bit out-or-control so I pulled over and took some deep breaths.  I knew I had someone else’s address in the GPS who lived near by so I used that one instead.  I then found the pet store.  My next trip was to the daycare.  Again my GPS got me there just fine.   

It is so difficult explaining what happens when my spatial orientation gets challenged.  I think it’s a little like being drunk.  I can’t figure stuff out at all when I’m in that state. That night I had Brainstormers support group a support group for people who have some sort of brain injury, but I really didn’t want to go.  I was supposed to unlock the door without setting off the fire alarm and I was nervous about that as well.  I sat quietly with my ear plugs in for a few minutes to “rest my brain” and  then I walked over.

In Brainstormers we always allow anyone who wishes to share, to do so.  I blabbered about my stressful day and my spatial orientation issues.  I didn’t need any advice.  I only needed to get my feelings out to people who understood.  A person without a brain injury often has no idea what it feels like for a survivor to be lost.  For this reason, I often minimize my problem with directions because people just don’t “get it.”  I felt energized and relieved when I shared my struggles.

As a brain injury survivor, do people just not “get it?”  How do you deal with this?  Writing in my journal helps me a lot. Attending a group like “Brainstormers” where people know what I’m going through, is a godsend.  What helps for you?  See commenting instruction on the right above or contact me directly at puffer61@gmail.com  

Lent

Lent is my favorite season of the church year.  This year I’m using Ed Hays The Lenten Labyrinth: Daily Reflections for the Journey of Lent.  Each day is another twist and turn as we walk through the Labyrinth of Lent.  Today he tells a parable for us to ponder on our journey.

Once there was a Jewish rabbi who had a servant named Jacob.  They would often ride together in a horse-drawn cart.
The rabbi was extremely fond of his wonderful horse.  It was a beautiful, brown, lively animal.  Once, when they were
traveling through Russia, the rabbi decided to spend the night at an inn in a small town.  As was the custom, Jacob, the
servant, spent the night at the stable with the horse.  Into the stable that night came a horse trader with a big bottle of
vodka.  He made friends with Jacob, and they drank and drank until the early hours of the morning, when the horse
trader bought the rabb8’s horse for a song.  The next morning the servant woke up horrified at what he had done.  He
didn’t know what to do next for at any moment the rabbi would arrive.  So he ran over, picked up the cart, placed himself
between the cart poles and began munching on the straw.  The rabbi came out of the inn and said, “what is this?  Where
is my horse?”
Jacob said “Horse?  I’m your horse!”  The rabbi said, “You must be insane!  Jacob, have you lost your mind?  What
has happened to my horse?”  Jacob responded, “Rabbi, don’t get angry.  I must make a confession to you.  Many years
ago,I failed.  I slipped and fell.  I had sex with a woman who wasn’t my wife.  What’s really bad, Rabbi is that I enjoyed it
and I wasn’t sorry.  God punished me by making me a horse – your horse!  For all these years I’ve 
pulled your cart around and today my penance is over!  Blessed be God!”
The poor rabbi who was devout said, “Well, all things are possible with God.  This is amazing!”  While the rabbi
was swept off his feet by this miraculous event, there was a practical problem.  How could they continue their journey
without a horse?  So the rabbi had Jacob wait there and went to the market.  When he came to the horse traders, he
found munching on some hay.  He went up and whispered in the horse’s ear, “Goodness sake, Jacob, so soon again?”
Hays writes, “Along with flexibility, creativity and humor are essential for anyone in the maze.  Each of these provisions for the way (was) addressed in (this) parable.” 

His words remind me of our support group Brainstormers and how we spend time sharing our struggles with humor. We understand each other and it is good to laugh together.  It’s difficult sharing my challenges with someone who doesn’t have a brain injury because it often appears as if I’m putting myself down which I’m not. When one has a brain injury, flexibility, creativity and humor is crucial.  I do hope God will give me widsom as I travel through this Lenten Labyrinth.

Changing Internet Providers

I had to change Internet providers because I no longer can get the signal from the local one I’ve been using. This has been a huge issue. I’m glad that my husband is well versed in anything related to the computer because it has thrown me for a loop. I’m amazed at how much I rely on the Internet to communicate.

One of the things that is difficult for me now is being flexible. I need to have things done pretty much the same way or I become stressed. The browser I use now for e-mail is different and I’m trying to get used to it. I do an e-letter for one of my churches and I had it pretty well figured out. To make it more complicated, one must be a member of the list to post and while I could receive e-mail at my old address, I couldn’t send it. I did the e-letter on the old system but I couldn’t send it. The email guy had to get me set up with my new address I then had to copy and paste to my new address in order to send it.

I’m guessing a person adept with computer things would not understand my difficulties. He or she probably would say, “Okay, just copy and paste already. It’s no big deal!” Unfortunately for me, it is a big deal. However, I need to relax around this. There are certainly more important things than making sure I receive all my list serve messages for me to think about now! I thought by only doing a little bit this week it would take the pressure off me and I wouldn’t get so stressed. I figured I could spend time contacting everyone about my new email address and relax some but I’ve discovered, this was a mistake. I put off doing this and instead read the New York Times. I guess it’s better than watching soap operas on television!

So it’s time to quite procrastinating and contact the folks I need to contact. I’ll feel better once it’s all done. I think I’ll even spend some time getting used to my new browser! Now that you are a brain injury survivor, have you discovered you are less flexible? I’ve discovered that many of my challenges are similar to people who don’t have a brain injury, only more challenging! See above right for commenting instructions. If you’d rather, contact me at my new address puffer61@gmailcom.