Wilderness II

Lately, I’ve noticed my brain injury challenges are more present than they sometimes are. I’m trying to manage them but it is very hard. Yesterday I said to Michael, “Why don’t I ever see other survivors dealing with over-stimulation and cognitive issues?  I see brain injury folks all the time attending meetings, workshops and other events and they don’t seem to struggle as I do.”

His answer? “Probably because they don’t get out in the community like you.”  A light went on in my head and I thought back to all I’ve learned about brain injury.  Perhaps the folks I see are less challenged by cognitive overload and stimulation issues. They may have other reactions such as slow speech or difficulty in using their hands or legs,

March signIn addition, I feel called to work for justice in my world. That doesn’t make me better than others.  It just gives me a different calling.  I’ve chosen to continue working for justice even if it means sometimes exacerbating my brain injury weaknesses.

For example in Atlanta I pushed through those challenges by doing such things as visiting Terry Mincey on death row or spending 24 hours on the streets with the Open Door Community. The price paid was having to take it easy for several days. Here in Asheville, I choose to be arrested in the Moral Monday movement in Raleigh – four hours away.  Again, I rested for days afterwards.

I’m so glad I did these things but I’m not sure I would want to pay the same price again. Now I’m deciding how important an issue is and whether my presence matters before making the decision to participate

Life is a journey and the wilderness often changes around us. I can’t keep living the way I used to live.  I must always choose the path I believe God is calling me to travel.  God then gives me what I need for the journey.

All of us are living in the wilderness and must listen for the Spirit’s voice. What is the Spirit saying to me now?  I’m not sure.  What is the Spirit guiding you to do?  Feel free to answer in the comments because we are all in this life together.  I’m interested.

Vulnerability

GCPC bulletin picture

Ultimately, when you’re at the edge, you have to go forward or backward;
if you go forward, you have to jump together.
~ Yo-Yo Ma

A couple of Sundays ago, Marcia Mount Shoop, pastor at Grace Covenant Presbyterian Church, preached a sermon that really impressed me. I was out of town that Sunday so I read it. (here)   (picture above from bulletin)

In it she tells the story of Ray Hinton – a man who spent 30 Years on death row before being exonerated and released. “After three years of talking to no one, he heard another {prisoner} crying. He heard crying a lot on death row….but this time something happened.  Ray got up and started to pace.  He could feel something stirring, but he resisted it, telling himself, ‘His crying has got nothing to do with me.’ ”

Ray’s mind wandered as he paced in his cell. Marcia said, “The Spirit was on the move. As the man cried again, Ray realized that he, too, was crying. He sat down on his bed and started to weep for the man jailed near his cell.”

He wrote later, “I was on death row not by my own choice …despair was a choice. Hatred was a choice. Anger was a choice….Hope was a choice.”  Faith and love are choices.  So he made the choice to reach out – to love.

“Hey, are you all right over there?”

The man told him he just found out his mother had died. Ray said, “I’m sorry man.  I really am.”  This was followed by other voices from the cells around him.  “Sorry for your loss” and “Sorry, man.  Rest  in peace.”

Ray wrote, “I wasn’t expecting to have my heart break that night. I wasn’t expecting to end three years of silence.  It was a revelation to realize that I wasn’t the only man on death row.  I was born with the same gift from God we all are born with – the impulse to reach out and lessen the suffering of another human being.  It was a gift and we each had a choice whether to use this gift or not.”

Marcia continued, “Ray’s profound vulnerability as a black man sentenced to death for a crime he did not commit had a ripple effect onto those who loved him.” Thinking about those on his cell block, I would add “and on everyone around him.”

While often it is not a choice to be vulnerable, sometimes it can be. All of us have vulnerabilities but we often hide them because we don’t want to seem weaker than those around us.

People with disabilities often don’t have that choice. Some of us have hidden disabilities that you can’t see.  I’m able to hide my cognitive overload, spatial orientation and other issues.  However, when I do this, I’m a zombie, often sleeping for many days to recover.  Since moving to Asheville when possible, I’ve chosen not to hide my vulnerabilities and be my true self.

I do hate when I say something like, “I have to miss that meeting because I’m cognitively maxed out,” and the response is “At least you have an excuse.” I want to scream but instead think silently, “My excuse is taking care of myself which we all must do including you!”  Perhaps one day I’ll have the courage to say it out loud.

In our society, taking care of ourselves is looked down upon. We’re rewarded for working long hours or serving on committees at the expense of our health.

Even in church, folks look up to those who are serving on several committees, working a full time job and taking care of their families. Folks like this are seen as “better Christians.” Even Jesus got away from the crowds to rejuvenate. If Jesus had to do it, who are we to think we don’t?

I must note these words about vulnerability are penned to a mostly white middle class audience. Many folks who live in lower socioeconomic or racial status do not have this choice.  They have to work in order to put food on the table and take care of their families.  They have to hide their vulnerabilities and this makes me very sad.

Take a moment now and think about your vulnerabilities.  Do you feel comfortable sharing them?  Is it safe? What about folks around you?  I would love to hear your thoughts about vulnerability in the comment section.

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.

Happy Birthday!

campfireI turned 53 this past Sunday. How did that happen? The last time I checked I was 33. I always become rather introspective around my birthday. Especially now, since 2/3rds of my life is over. Folks are living longer and I might live past 73 but reaching my 50’s has been sobering just the same.

This past weekend, Michael and I camped at the Montreat campground which is only 30 minutes away. It was cold so we bundled up. Well, I didn’t bundle up enough partly because I refused to take out my winter coat yet. We brought Sparky and at one point, we put on the coat he hates and I wrapped him in a blanket as we sat next to the fire. It was a small fire but that’s okay. (see picture above)

Michael cookingHere is a picture of Michael preparing dinner. He’s all bundled up so you can’t even see his face. It’s remarkable how we could be 30 minutes away from the city yet it felt as it we were out in the country.

This Sunday was World Communion Sunday and folks at GCPC were invited to wear garb from other parts of the world. The choir didn’t wear robes but instead wore festive clothes. It sounded like it was a fun service and I’m sorry I wasn’t there -not too sorry though, since I loved camping.

I did read Mark Ramsey’s sermon called “Enough to Save the Day.” He used Luke 6:17-22 and Acts 16:16-40 – the story of Paul and Silas. Mark pointed out the jailer asked one of scripture’s most profound questions, “What must I do to be saved. He suggested this “is a personal question in search of a personalized answer…..What must I do to be saved from what destroys me? What must I do to be saved from my particular bondage, my oppression, my addiction, my emptiness, or my boredom? There are countless ways to lose our way in this world or to be in bondage, just as there are many different threats from which we need to be saved.”

I’m in bondage to the past – the way I used to be – for I often long for things that just aren’t going to happen. Earlier in the sermon, Mark spoke about “climbing the ladder,” one I metaphorically, fell off a long time ago. I’m not going to be a great preacher, chaplain, teacher or many other dreams I’ve had. Falling off this ladder can be lonely because everyone else seems to still be on it.

However, I think the way Mark used this term is broader than how it’s often used.. He said in many of the conversations he’s had with folks, people are “so tired of trying to climb some ladder: the ladder of success, the ladder of first impressions, the ladder of spiritual enlightenment, the ladder of striving, the ladder of pain….the ladder of question after question about the meaning of life.”

In this sense, perhaps I am still on some sort of ladder. It’s the ladder of improving after a brain injury. While it is true that even after 18 years, I’m still improving and will improve until I die, it doesn’t need to be my focus.

So as I begin my 53rd year, I want to focus on being saved from my bondage. I’m so glad I spent my birthday weekend out in the woods – even if it was cold. I want to focus on the beauties of this world and on the creative Spirit within me. There is a Spirit within me, if I’d only listen to Her voice.

 

 

Raleigh

Moral Monday Tee-shirtI’ve changed my mind about being arrested in Raleigh this Monday.  I’ve decided to do it.  I understand it will be a stretch but I can’t seem to get the idea out of my head.  Am I hearing God’s voice or am I hearing my own?  I don’t know.

I’ve talked to several folks who have been through the process to get some idea of what I’m getting myself into though.  One person I know even wrote me a long email about ways I could make this work.  As much as I wish God would simply take away my brain injury challenges, I know God can’t do that.  While some folks may disagree with me on this, I don’t believe God takes away our struggles but rather gives us ways to go through them.

Am I making a mistake?  Perhaps. However, I’ve made plans to simply step out of the line when the protesters enter the capital if I think it will be too much stimulation for me.  I can even leave the capital building itself if my compensatory stradegies don’t work.  A friend reminded me, if I decide to not do this, it doesn’t mean I’m a failure.  It just means I’m not able to do this now but I can support the issue in other ways.

It may be a while until I write my next post since I need to recuperate from this to do so.  Here is a wonderful report written by Willie James Jennings who teaches at Duke Divinity School about his experience with this. In it he writes, “The modern lie of individualism is most powerful when we imagine that boldness comes from within.  It does not.  I comes from without, from the Spirit of God”  I feel God’s Spirit within me now especially through the many people who have listened to my fears and given me their wisdom. http://www.religiondispatches.org/archive/politics/7146/becoming_the_common__why_i_got_arrested_in_north_carolina_this_week___politics___/I’ve

Holy Anticipation

Last night I had to be at Grace Covenant Presbyterian Church for an alto rehearsal at 6 :15.  Ever since my accident, I don’t see well in the dark.  I don’t know exactly why this is or what happened to injure my eyes but something did.  As a result, I don’t drive at night which is a real pain in the neck.  I couldn’t find anyone to take me so I decided to take the bus.  I only needed to get it about an hour before I needed to be there so I figured it would be okay.

Of course I worried about it.  “What if I get on the wrong bus?  What if I pull the string to signal the driver to stop at the wrong place? What if I look like a jerk because I’m not familiar with the route?”  It’s interesting because Mark Ramsey’s sermon at GCPC this past Sunday was about Mary’s song and it was called “What We Do While We Wait…..We Worry.”  (The picture is “Magnificat!” by Sister Mary Grace Thul and was printed in the bulletin.)


We had an email exchange about parts of it yesterday before my bus trip.  I was especially bothered by one of his statements in the sermon: “…we find that anxiety has, by God’s grace, become holy anticipation and against all appearances, and against all odds —that literally saves our life.” It’s funny but when I reframed my worry this way, I wasn’t so stressed.  By the time I was ready to go, I was okay. I think perhaps God’s Spirit was at work.

I met my friend, Donnie, on the bus.  Donnie was homeless and he recently moved into an apartment.  He knew everyone on the bus which helped folks to begin talking to each other.  I discovered another woman was concerned about getting her connection as well.  When we got to the station, it was just in time for me to catch my bus.  However, I didn’t know which one it was and by the time I figured it out, it had pulled out.  I ran after it screaming, “Wait!  Wait!”  A family with two young children were nearby waiting for their bus and they told me that once the driver closes the door it’s not opened again. 

So I went into the bus station to try and figure out if another bus was going to come.  The guard sitting behind the information booth ignored my questions so I turned around and asked the other riders.  I was told another bus would come in about a half hour and I could wait.  I looked at my watch and saw I had 35 minutes until rehearsal began.  I said, “Shoot, I bet I could walk there faster!”  Another woman nodded and said, “Yep you could.” 

I had no idea how far on Merrimon GCPC was but I figured I’m in good physical condition and it couldn’t be too far so that’s what I decided to do.  My first problem was trying to figure out how to get to Merrimon from the bus station.  Folks pointed me the right way but my spatial orientation issues got me all confused.  I asked several folks how to get there but I didn’t write what they said down and I ended up walking all over downtown.

By the time I finally figured out where Merrimon was it was dark and I had only 15 minutes before the rehearsal began.  I thought about going back to the bus station to catch that bus but I wasn’t sure how to get back to it.  So I trudged on in the dark. I considered stopping at one of the bus stops and waiting for the bus, but I do hate being in darkness outside like that. After a few feet, it is total darkness and it’s a bit scary not knowing what is out there so I decided walking was the better option. 

It always helps me to think of a saying or a Scripture verse when I’m stressed out inside.  I thought back to Mark’s sermon and tried to come up with that phrase that calmed me down before but all I could come up with was “holy *********!  I decided that wasn’t the right phrase and walked on.

When I got to the McDonalds next to the church, the bus passed me.  When I arrived at the rehearsal I was a sweaty mess and was panting too hard to sing a note. Since my brain can handle only so much stimulation and my little journey began at 5 o’clock, by 7:45 I could tell I needed to “rest my brain.”   One of the rest rooms has a couch so I went there, put in my ear plugs and turned out the light for a few minutes.  

I am thankful that God gives me, and others, the strength we need to live in our challenging, wonderful world.  

 

Prison Cell

“A Prison cell, in which one waits, hopes…and is completely dependent on the fact that the door of freedom has to be opened from the outside, is not a bad picture of Advent” – Dietrich Bonhoffer

The bulletin for this past Sunday’s worship service at Grace Covenant Presbyterian (GCPC) had the above rather odd quote on the front. Now that I’m singing in the choir, I often don’t have time to read the bulletin until later and when I read this I thought, “Advent and prison?  What could they possibly have in common?”  However, when I read it later, I understood.

I’ve been in a lot of prisons in my life.  I don’t mean when I visited someone on death row in Georgia which I did in the 90’s.  I mean prisons of my own, and sometimes the world’s, making.  My traumatic brain injury has been my latest prison.  It seems when I look at other people and see all the things they are able to do and I can’t, I’m in prison.  Dammit, I think.  (and yes, I sometimes use this cuss word.) Why am I stuck behind these bars!  I want to be free! 

In the beginning, I waited for freedom.  I tried a couple of different volunteer positions that didn’t work out until I finally began volunteering as a Chaplain at a retirement facility in Atlanta.  I figured it was just until I improved enough to serve a church again.  The prison door opened for a little while.  Years past and the door began to close because I knew I wouldn’t be able to work in a church again.  To make matters even worse, my husband Michael took a job in Asheville, NC so we had to move.

Change is horrible for anyone with a brain injury.  We like things constant and we don’t do well with new things.  This is getting better for me now but back then it really threw me.  I decided to not get involved in anything here until I became more accustomed to the city.   After experiencing the closed prison doors in Atlanta, I came to a new place where I had to learn everything all over again.  I don’t even like to think about how lost I always was when we first moved here (spatial orientation) but the prison doors had opened.

I tried two more volunteer positions here. It seems when one has a brain injury, one must be willing to try different things for often things don’t work the first time.  That is certainly the case with me. Both positions were okay but I felt the prison doors shutting again.  I wanted so much to be like everyone else.  I wanted to work and pay my own way in the world.   I finally began doing some visitation at one of my churches and the prison doors opened again. I do love this and plan to continue but  recently, I have felt the prison doors slowly closing again.

God opened those doors for me  in the past and I believe She will open them again. So this Advent, I am waiting for God’s Spirit to let in some sunlight.  Truth be told, I’m already feeling it.  Come Lord Jesus come.  I’m waiting for you to open the doors again.

Note: At GCPC there is often the following note in the bulletin” “We gather to worship God who is larger than all our imagination!  We encourage all persons to sing the gender nouns and pronouns they prefer in referring to God.” I never use pronouns for God when I’m speaking in public because unlike the biblical writers, I believe God has no gender.  I know that some folks don’t like female pronouns for God but I figure since this is my blog, it is my perogative to use them.