Holy Week

Mark and Kristy lead a class on the Resurrection stories and art at Grace Covenant Presbyterian Church (GCPC). In the first session, they laid out 15 paintings depicting the Resurrection in art.  We were asked to look through them selecting the ones that drew us in.  I saw glorious images of Jesus ascending into heaven but none of them really struck me until I saw one by Michael Ciry, pictured on the left.  Someone commented that this Jesus looked like he just came out of concentration camp.  I think I was the only one drawn to that painting.  I could relate to that Jesus because that Jesus knows exactly how I feel.

I’ve taken on too many things again this week.  They’re not stressful but my perfectionism makes them more difficult then they need to be.  I worry about them which uses up too many of the neurons in my brain. This in turn stresses me out and I’m miserable.  I try and spread commitments out but it didn’t work this time.

It doesn’t have to be this way which is one reason I agreed to do everything.  I want to practice dealing with the stress.  When I led worship all the time, I was a perfectionist.  Every word had to be just the right one and I was careful not to forget a word or trip as I walked to the pulpit.  I didn’t have the challenges of too much stimulation which is now part of everything I do.  Worrying only adds to the stimulation.

As a TBI survivor, I cannot be a perfectionist and I can’t worry about what people think.  For instance tomorrow I’m going to lead communion at Circle of Mercy (COM).  When I lead, it is simple and certainly not nearly as “preachy” as others who lead.  But this is how I do it.  Some people might like it, others won’t but that’s okay.

I’ve said the words of institution hundreds of times but due to my brain injury, my memory can’t be trusted and sometimes I forget simple things.  I worry this will happen but you know what?  The sacrament doesn’t depend on me so if I mess it up, it doesn’t matter!  I need to say this to myself a million times.  (Since the Alliance of Baptists , one of COM’s two denominations, does not view communion as a sacrament, I’ve had to think more carefully about what communion means to me.)

On Good Friday at GCPC, nine different leaders are leading 20 minutes on the Last Words of Christ.  Again, my perfectionism is getting in the way.  I’m a good speaker but I worry about forgetting the words. I also compare myself to others.  I printed the words out in very large print double spaced to help me with this.  In all the times I’ve spoken since my TBI, I haven’t lost my place or fumbled on my words. My eye contact isn’t great now because I have to look at my words more but this is the way I now am.   I think my words will help folks reflect on the day plus they are fun to preach.  I’m trying to remember that some people may relate and others may not.  

So this Holy Week, I’m going to try not to be such a protectionist!  I’ll see how this works.

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  

"People-First" Language

You’re probably wondering what a picture of the Y’s pool has to do with “people-first” language.   Absolutely nothing.  I don’t know how to put  pictures throughout my post but I can post them at the beginning so you’ll have to wait until further down  when I talk about the pool!

This morning I emailed back and forth to a friend about the importance of “people-first” language when talking about people who have a disability.  The issue of children with disabilities came up in my Sunday School class yesterday so I went through my files to review what I have on disability. If you don’t know what “people-first” language is, it’s language that describes what a person HAS, and not what a person is.     

For example how many times have you said or heard someone else say “she’s autistic” or  “she’s confined to a wheelchair.”  What I really hate is when someone calls me “brain damaged.”  Yes, my brain is injured but I’m much more than my damaged brain!  This morning I swam laps at the Y , my dog Sparky is sitting on the sofa next to me and I’m going to help my husband do a presentation on brain injury next week for some folks involved in law enforcement in Haywood county.  Here’s a link to Kathie Snow’s suggestions for using people first language. http://www.disabilityisnatural.com/images/PDF/pflchart09.pdf  On that site you also may read a longer article about “people- first” language.”

I didn’t realize how important using this language is until I began using it myself. My whole concept of people with disabilities changed. I began to see them (or us, since TBI is a disability) totally differently.  No longer were they nameless or faceless because I was too busy focusing on their wheelchairs rather than them.  Yes it is true that people with disabilities often need help but everyone needs help in their lives.  It’s often just magnified when a person has a disability. And the truth is, people with disabilities can often do much more than folks without disabilites think, if they would just be patient and give us the chance!

As usual, I’ve gotten involved in doing too many things.  They aren’t stressful things and it’s really not too much by the world’s standards but my brain can’t take as much now. One of the ways I deal with cognitive overload is by swimming hard laps at the Y.  It felt so good to get away from things and I now feel so much better.

Hunting through my disability files reminded me that I need to organize my papers again.  I used to function just fine when papers were piled on my desk but now it stresses me out.  I HAVE to organize my life better or I won’t be able to function. So a little at a time, I will organize my office.  I really hate organizing things but if I split it up in short segments, it will be okay.

Have you heard of “people-first” language?  Have you tried using it for yourself and for others?  See upper right for commenting instructions or contact me directly at puffer61@gmail.com

Television

The picture on the lift is of my television. Actually it is a framed print but my television is behind it.  My husband Michael and I don’t watch television but we have one so we can play DVDs or watch special programs.  He’s really involved with bird watching and he found this print but he hasn’t hung it yet. Since we rarely watch television, this seemed as good a place as any to put it. The funny part is, we kind of like it there because it hides the television!

What is it with our society and televisions?  They seem to be every where.  At one point the post office even had one so we’d have something to watch as we waited in line. Yesterday after swimming at the Y, I was getting dressed when someone turned on the television in the locker room.  It was some stupid daytime show and I wasn’t interested in it at all.

My inability to filter out sound makes a blaring television really difficult for me.  People say they just like the background noise but I can’t have background noise and still function.  My brain no longer allows me to divide my attention so its not just background noise to me.  I turned on my hair dryer and the woman promptly turned the volume up so she could hear it.  

When I get over stimulated, which is what was happening to me, I become tense and short tempered.  I can only remain in that environment for a short time.  If it is a setting where I can turn the television off, I do so.  If not, I remain in the environment for as little as possible.

If you have a brain injury, do noisy televisions bother you? What about other sorts of stimulation: noisy rooms, music at dinner, or anything else?  Feel free to comment here or email me directly at puffer61@gmail.com I’m in the process of switching this blog to word press since commenting is much easier there. I had hoped brain injury survivors could share their challenges here but commenting is too difficult.        

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.