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.

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.

 

 

Summer Institute On Theology and Disability

I must admit, I was a bit nervous about going to the Summer Institute on Theology and Disability in Dallas June 16-20. Traveling is difficult for me due to all the stimulation and cognitive overload and I don’t do well in new environments. I need to be familiar with them because too much cognitive work, overloads my brain.

earplugsHowever, I was prepared. I brought a bottle of Sandalwood that I could inhale periodically. It’s a relaxing scent and it calms me down. I also brought my earplugs. Michael loaded some meditations and music on my phone so I could listen to them. All of this helped me so much and I didn’t have a repeat of last year’s escapade.

Last year, it was in Toronto and I went by myself. I’d never been out of the country before (accept when I was little and went to Mexico) so dealing with passports and such was very hard for me. Plus the Toronto airport is difficult to maneuver and having spatial orientation issues didn’t help. I know my limits and am very good at finding a quiet place where I can put in my earplugs and “rest my brain.”

However, last summer, I pushed beyond my brain’s capacities and began acting a bit strange. At one point I got so tired, I simply laid down under a table in the middle of a meeting so I could sleep. It is hard to explain, but there comes a point when my brain just shuts off which is what happened to me. To make matters worse, I couldn’t sleep at night so sometimes I simply roamed the halls in the dormitory where we stayed.

I was convinced Michael had died so I called him at work. When I got him, I was sure he was in the hospital lying to me so he put his boss on the phone. I was so “out-of-it” I figured his boss wasn’t telling me the truth either. There was a United Church of Christ (UCC) meeting going on at the same time and I was sure I saw Mark Ramsey, the pastor at Grace Covenant Presbyterian Church, there because he once served a church dually aligned with the Presbyterians and the UCC’s.

I even called the director at 2 AM and met him out in the hallway just to talk. Of course we were sitting on the floor but at one point, I decided I was tired and needed to lay down using the director’s lap as a pillow!  To make a long story short, he had no choice but to hospitalize me even though he was aware of what was going on. Of course the hospital had no idea so they ran all sorts of test. They called Michael to come get me but no one told him very much so he had no idea what to expect.

Sleep is what works for me so I slept in the hospital for hours. When I started to become more present, I realized I was stuck in the hospital until Michael came to get me. It turned out, Michael was so stressed that when he got to Toronto, he went to the Quaker meeting. He figured he couldn’t get me for 48 hours any way so he turned his phone off. Not being able to get ahold of him, I started to get nervous and called a few folks I knew in Asheville to no avail. All I could do was wait for him to come, which he finally did.

So this year, Michael came as my “attendant.” I asked him to attend to my needs by bringing me breakfast in bed one morning, but he refused. I’ll write about the Institute in later posts because I have much on which to reflect. One of the things I want to write about is the terminology for those of us who need a little help. While “attendant” is better than “care giver” I prefer “care partner” even though I understand the difficulties in using this term.

In case you’re interested, here is a link to an article that ran in a Methodist publication. If you look carefully, you can see me in red on the far side of the room. http://www.umc.org/news-and-media/theology-and-disability-summit-gets-united-methodist-welcome

Spatial Orientation

I’m finally getting used to having no sense of direction (spatial orientation).  Recently, I had to go to two different new places so I printed out directions on Map Quest as well as used my GPS.  Actually, I thought I could do it without the GPS so I only printed out the directions.  My double vision makes reading street signs difficult and by the time I could read the sign, it was too late to turn!  So I pulled over and put the address in my GPS.

Everything was going fine until the voice said “arriving at destination” and I didn’t see the Grand Bohemian Hotel.  I pulled into a parking lot and asked directions.  It turns out, it was right across the street from me and I didn’t recognize it. I pulled into the valet parking for which I didn’t want to pay but I figured if I tried to find a place to park on the street, I would never find the hotel again. 

The other directions were to a friend’s house.  He was moving and I wanted to see his new apartment.  I thought I wouldn’t need the GPS and could find it only with my map quest directions.  When that didn’t work, I pulled over and put in his address.  It took me to some house that I knew wasn’t right so I got out of my car and called folks I knew who would be there.  No one answered. 

However, when I looked up, I saw another friend who had just left the new apartment.  He said I was almost there and pointed me in the right direction. When he pulled away, another man I knew came. This person is aware of my directional issues so he had me follow him there. So today when I went to visit another man I know who is in a heath care facility in Hendersonville (about 30 minutes from me in Asheville) I printed out the directions and used the GPS.  I had been there before but I really didn’t want to get lost again so I decided to take no risks.

I really don’t like driving places and will do everything I can to avoid it.  Attending to other cars, following the traffic directions and dealing with the weather (in this case, darkness due to impending rain) takes up a whole lot of my cognitive energy (cognitive overload).  I never listen to music when I’m driving because I need to focus only on the road and not be distracted.  However, this time I put in a CD of Bach’s Brandenburg Concertos. 


I had been to the nursing home before and it was nice to cruise down the highway as I listened to the music.Of course, I made sure I knew how to turn the volume down in case I needed to concentrate on my driving. 

Stereo systems in cars now are so complicated.  I need a button with the word “off” on it so I know how to turn it off. Instead the buttons don’t have words on them and you’re supposed to know what they do by reading the directions once.  Well, my brain doesn’t work that way and I really don’t like to take the time to read the directions every time I want to use something in the car! One trick I use is to write the directions on a 3 X 5 card and keep that in the arm rest.  This is so much easier than trying to find something in the manual!

"Seeking Imagination"

This past Sunday at Grace Covenant Presbyterian Church, Kristy Farber preached a sermon that really affected me.  Her title was Seeking Imagination and I remembered thinking to myself that morning, “What does Mark 8:27-38 have to do with imagination?”

On top of that, the following quote by Anne Lamott was printed in the bulletin by the picture above. “Can you imagine the hopelessness of trying to live a spiritual life when you’re secretly looking up at the skies not for illumination or direction, but to gauge, miserably, the odds of rain?” This quotation really appealed to me since figuratively speaking, I’m always gauging the odds of rain in my life.

I’ve never been a lectionary preacher but I’m beginning to see how using a lectionary can be good for the life of the church.  I think sometimes there’s a danger in making the text fit what the preacher wants to say to the congregation and I was a bit fearful that Kristy was going to this this.  However, the Spirit moved through her and spoke to my needs and I suspect to others as well.

In it she said, “If we are going to deny ourselves and try to be more like Jesus, we may need to exercise our imaginations.  To do so may be a part of denying ourselves. Attempting to see, not just what we have always seen, not just what we have been taught to see, but the things God may have for us.”

My TBI really messed up my dreams.  I wanted to be a pastor who preached more regularly than what I had been doing at the church I served.  I wanted to be involved in urban ministry and do more pastoral care.  The plan was I would be the breadwinner and my husband Michael would get a PhD in Anthropology or Psychology.  Our accident certainly ended that dream – not right away though.  Awareness is a huge issue when someone has a brain injury.  People just aren’t aware of how the brain injury has affected them.

For some folks, knowledge of one’s abilities can take a long time as it has in my case. For those of us who don’t have a lot of noticeable difficulties, it can be even harder.  I am able to do quite a bit now. However, when I push myself to do too much I’m usually no good for a day or so.I have to deal with the effects of cognitive overload, over stimulation, mental fatigue and others things.  As a result, I make choices.  Is what I want to do worth being out-of-commission for a few days or not? .  Many brain injury survivors do not have this choice which for me is a blessing and a curse.

I often must read again the poem Welcome to Holland by Emily Perl Kingsley. She tells the experience of raising a child with a disability.  For the whole poem go here. http://www.our-kids.org/Archives/Holland.html  In it she writes, ‘The important thing is that they haven’t taken you to a horrible, disgusting place full of pestilence, famine and disease….  It’s just a different place.  It’s slower-paced than Italy, less flashy than Italy.  But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.” 

The pain of having a TBI is never going to go away but I don’t believe God allowed this to happen to me for a reason. Instead, God uses the things that happen to us so we may have new life.  God is as sad about this justy as I am but as Kristy said in her sermon, “As we seek to follow Christ, to deny ourselves, let us pray for the vision and insight to see this world through the eyes of Jesus, the one who brings life out of death and hope in unexpected places.”

I ask for God to help me imagine something different than my shattered dreams.  It will take a while.  It has already taken a while.  As Kingsley said, “But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.” 

And there ARE some lovely things here!

God’s Wisdom

I read a quote from Susan B. Anthony today. “I distrust those people who know so well what God wants them to do, because I notice it always coincides with their own desires.”  I really hope that I am following what God wants me to do and not only what I want.

It bothers me that I can no longer work as a minister but I still try to serve God as I can.  I used to be able to keep so much information in my head!  I was always running from one meeting to another and trying to be involved in many things.  Neurons in my brain were destroyed when I had my car accident and the neurons I have left, must work harder so being busy like that is no longer possible.

In fact things that most folks don’t even think about are difficult for me. Luncheons, meetings and driving somewhere new involves quite a bit of my brain function.  I have to attend to conversations while filtering out background noise and lights which really is more complicated than I realized. For this reason, I don’t do meetings or luncheons unless I believe they are absolutely necessary.    

Now it is a major thing when I go somewhere new.  This past week, there was a luncheon at a country club I really wanted to attend.  My husband Michael is really good with directions and I often rely on him for these. I know it drives him crazy when I ask him for directions all the time so I’ve tried to depend on my GPS or even ask other people. I also  keep a folder with all my directions in it so I check this as well. 

However sometimes my own worries get in the way of my good sense. That’s what happened this week.  To make it worse, Michael had a stressful week so he didn’t have much patience.  I was frantically trying to find a map (It doesn’t take much for me to get frantic anymore!) and so I asked him.  He became angry at me and then I lost it.  I slammed our front door as I went outside to his car to find it. I slammed the car door after I located it and for good measure, I slammed the door coming in. I can laugh at it now but it really was childish.  I have discovered that I seem to do more childish things now than before sustaining my brain injury.

While overwhelming, I really feel the things I did this week were what God wanted me to do. I know it pushed my limits and I plan to take it easy for a few days.  I pray that God will give me the wisdom to know if my thoughts are true or if I’m really fulfilling my own desires.