Departure

airplanneMichael and I attended the Summer Institute on Disability and Theology last week in LA. It’s a 3+ hour plane ride and a 3 hour time change.  This was problematic for me which I’ll write about later. Today: trip home.

Since the trip there was overwhelming for me, we decided to do everything in our power to make the trip home less so. An airport is full of brain injury challenges: noise, flashing lights, crowds and other challenges.  On our trip there, I saw many folks riding little scooters and people being pushed in wheel chairs. I mentioned to Michael that perhaps this would be a good idea for me.

When we first walked in to the airport, we saw an employee with several wheelchairs so we asked for one. I sat down in it while Michael left to drop off our luggage. I wore my pink ear plugs the entire time, including while returning the rental car.

Riding in that wheelchair is where the fun began. The woman was an expert in pushing it through the airport. She swerved around people and got to the gate so quickly, even if I wasn’t closing my eyes to reduce stimulation, I would have closed them out of fear!

We had to go through security which is always a nightmare. They even asked me to remove my eye patch so they could check it out!  I walked through the scanner and we waited for Michael.  We waited and waited and waited.  The pusher was clearly frustrated.  “He won’t go through the e-x-ray machine opting for a body search,”  I said.  She rolled her eyes.  “That will take FOREVER at this airport.”

We continued to wait when she finally said, “Okay, we’re going to the gate and he can meet us there.” She then pushed the wheelchair, dodging all the people, safely arriving at my gate where she , brought me to the first boarders area. After pacing around a while, she said, “I’m going to go check on him.”  I realized I needed to give her a tip but had no idea how much.  I settled on a five dollar bill since she was an expert at pushing that thing. Michael told me later, she didn’t check on him, which didn’t surprise me.

The gate was changed while I was sitting there and I misunderstood the announcement so I remained in my seat. I texted Michael several times even though I knew he wouldn’t reply.  I just needed to express my anger.  We the last boarding our plane because I hate the commotion involved in this process.  I felt refreshed instead of overstimulated as I had on our arrival.

I will use a wheel chair the next time I fly for it really is a great compensatory strategy.

Differently

Every now and then I get bummed. Sometimes, I think about simply staying home all day, reading books or checking Facebook and Twitter. There’s enough information flying around that I know I could fill my time just fine.

When I first moved to Asheville, that’s just what I did. I had pushed myself too hard in Atlanta and I didn’t want to do the same thing here. However, I got bored. Like other people of faith, I am called to work for justice and peace in whatever way I’m able. These are important words for me to remember- “in whatever way I’m able. My brain injury has given me many limitations but this doesn’t give me a reason to avoid working to bring God’s reign in the world.

One caveat here though. Every person’s brain injury is different and comparing what I’m able to do with another brain injury survivor, is not possible. I know survivors who are unable to speak or unable to use their arms and legs. They have a call as well but it is different from mine.

Try harder or walk awayThe saying on the left does not exactly work for brain injury folks. If I simply walked away from something when it didn’t work, I would be walking away from things often. The statement needs to read “…choose whether to walk away or TRY SMARTER.” If doing something differently – perhaps even a couple of different ways – doesn’t work then walking away is an option.

For years I sat in the congregation at Grace Presbyterian Church and thought about singing in the choir.   Since I can no longer play violin, music has always been painful for me. Even though I sing, I wanted it to be with a group where the director knows how to rehearse which isn’t always the true in churches. At GCPC, this isn’t the case.

Finally three years ago, I decided to sing in the choir and it really touched on the musical parts of me that have been dormant. I love singing in the choir! However, I had to do things differently in order to participate. This meant not processing in with them because to do so meant standing in the narthex which is very noisy. I began staying in a room below the sanctuary and doing my “resting brain” thing until it was time to enter. Along with a couple other adjustments, this worked so instead of quitting, I worked “smarter.”

Of course I must always determine whether my adjustment affects the projects at hand in a negative way. In most situations, this isn’t the case. Usually it just involves me being different than others and I can live with that. However, I do try and make it clear that if someone has a problem with this, they should speak to me about it and not talk behind my back. Unfortunately, I’ve discovered folks like to talk behind people’s backs!  I’ve learned that’s their problem and not mine, although this is easier to write than to believe!

In order to participate in things, I also must determine if my adjustments are harder on me than necessary. I visited a man on death row for years in Atlanta and it was very hard for me. I’m glad I did this but in my current situation, I would not make the same choice.

If you have a brain injury, how do you work smarter and not harder? Even if you don’t have one, I’d be interested in your comments.

The Truth Will Make Me Odd

Every now and then, an entire worship service affects me which happened yesterday at Grace Covenant Presbyterian Church. My morning began with a choir rehearsal before the service where we practiced our introit. Brain Injury Survivors often do not do well with change so a different routine was difficult for me. Normally, I don’t process in with the choir in order to have some time alone “resting by brain” but I wanted to process this time. I knew this meant getting cognitively overloaded sooner but figured it was worth it.

To complicate it even more, the choir sat in a different arrangement. Yesterday we sang an introit which I wanted to sing so I tried to “rest my brain” waiting with the choir in the narthex. I didn’t use my ear plugs but instead sat down on a bench and closed my eyes which blocks visual stimulation. The noise was too much though so I plugged my ears with my fingers. I probably looked silly but I’ve stopped caring what people think.

"You shall know the truth, and the truth shall make you odd." Flannery O'Connor

“You shall know the truth, and the truth shall make you odd.” Flannery O’Connor

This picture was on the front of the bulletin and this quote by Flannery O’Connor has always been one of my favorites. Sitting in the narthex, with my eyes closed and my fingers in my ears certainly must have looked odd! I couldn’t remember where I was supposed to stand to process in but others guided me so I ended up in the right place. It was so much fun, singing the introit standing in the side aisles and finishing it in the choir loft.

Of course all the extra stimulation and change made the remaining neurons in my brain work harder so I became “cognitively overloaded.” I knew if I didn’t want to have to leave without talking to anyone after the service, I’d have to leave before it was finished. The back, unobtrusive, way was not accessible to me so I ended up having to get up and walk down the side of the Sanctuary during the offering.

I then found a quiet place where I could put in my ear plugs and rest my brain for a while. Sometimes dealing with these cognitive stimulation issues is a real pain. However, if I want to be involved in things, I must use these “compensatory strategies” even if they’re a nuisance.

I also connected to Kristy and Mark’s sermon although probably not in the way others did. They’re in the midst of doing a sermon series on the gifts of the Spirit in Philippians 2:1-13 and yesterday they did a dialog sermon about “self-control.” I have always had control issues for I LIKE being able to control things in my life. For a while after my TBI, I tried to do some of what I’d done before but it wore me out. I ended up having to rest for days to make up for my cognitive overload.

However, having a brain injury has shown me that I don’t have control. In fact, this is something those of us who have disabilities can help the rest of the world understand. Often folks try and pretend that everything is okay in their life. Folks with disabilities cannot do this. We must be honest about our limitations and ask for help. For a time, I did try and hide my limitations but I paid the price by breaking down for days. Although brain injury survivors are not alike and many cannot do what I’m able to do this doesn’t mean I’m “better” than others. It just means I have different challenges.

Mark and Kristy talked about how we’re trying to control our bodies by dieting, getting rid of bad habits and developing new routines. We try to bring order to our lives but they said, “We can do all the emptying and de-cluttering we want but unless something meaningful fills that space, we will spend our whole lives sweeping and putting things in order.”

I thought about my own life and how I’ve been trying to control my limitations. The thing is, they cannot be controlled and managed. I can work around them though which I am trying to do. I’m also trying to accept what my life is never going to be. This is hard but I don’t want to spend the remainder of my days pushing and pushing for control. I want to learn to accept what is.

This truth will make me odd and that’s okay.

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

“Forward Together, Not One Step Back!”

IMG_20130629_142745_876My friend, Leslie Boyd, designed this tee-shirt for those of us doing civil disobedience in Raleigh.  I’m not going to wear it to Grace Covenant Presbyterian tomorrow morning but I am going to wear it when I led communion at Circle of Mercy later that day.

When I was in the holding cell with ten other women, we went around the circle, told our names and whether we had participated in civil disobedience before.  A few of us had several actions under our belts but for many of us this was our first one.  One woman was 82 years old!

I remember when I decided I couldn’t do this because of my brain injury, I felt a little like a failure.  I believed then that only “true activists” did this and until I had the experience, I wasn’t a true activist.  I’ve since changed my tune drastically.   We are all members of the Body of Christ and we have our own ways of contributing to this cause of justice.

My brain functioning has improved immensely since my accident in 1996.  I remember when I lived in Atlanta, I often went to rallies where I joined in singing the chants.  As much as I love Asheville, it just doesn’t have these sort of rallies here and I’ve missed participating immensely.  Below is a picture of the crowd last Monday.crowd June 24, 2013

I loved the energy and the chants.  Yes, I did have to use “compensatory strategies” to be there but I used them and they worked.   This really is the start of an incredible movement for change in North Carolina and I’m glad I can be part of it.

See this link for the N.C NAACP’s video of the event.  http://www.youtube.com/watch?v=WsYWKnSsvxE It’s about 11 minutes long and you’ll get a taste of Dr. Barber and his powerful preaching.  I understand he’s going to preach at a church here in Asheville somewhere down the line but I would love for him to lead a rally here.  Who knows?  Perhaps it will happen.  On the video, you’ll hear the chant “Forward Together, Not One Step Back!”

Leslie Boyd, Rev.The picture on the left is of Rev. Dr. William Barber II, Leslie Boyd and a state legislator who attended the rally.  She greeted me when I was released from jail.  The following is another video of the rally on June 17.  This one is done all in black and white to signify the “backwards thinking of the N.C. General Assembly.”

http://www.youtube.com/watch?v=lYI7nNOXxRQ&feature=youtu.be

Dr. Barber really is at his best in this one.  At about 7.50 he mentions how N.C. has denied Medicaid expansion and offers a laundry list of what will happen.  He asks in his preacher’s voice “How mean can you get?”  At about 9:15 he tells the parable of the fig tree and how there’s no fruit on it.  He then quotes Jesus, “There is something dam wrong with that!”

Yes there is.  “Forward Together, Not One Step Back!”

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