Asheville Women’s March

26734482_10155832346710853_7831015963479294712_n[1]

Women’s March in downtown Asheville

The second annual women’s March in Asheville was Saturday, Jan.20 – a week ago. I didn’t attend last year but was determined to go this time. Michael had the flu for ten days so he couldn’t go with me.  I don’t do well in large crowds due to brain injury limitations so I called a woman who lives close to me and we planned on taking the bus together.  I’m comfortable riding the bus since I’ve taken it often but I wasn’t comfortable finding this rally.

Taking the bus puts me in contact with folks I don’t usually meet during my day. There’s a real push in Asheville to get folks to ride the bus even if they own a car but it is still used mostly by folks who don’t have alternative transportation.  I’d love to take it to Grace Covenant Presbyterian Church but with the transfer it takes 1 1/2 hours which isn’t workable.  Many folks have no choice but I can usually find – not always – but usually, a ride.

I was supposed to meet my friend at the stop on Haywood road right by my house. I told her it usually runs late but when I arrived, she wasn’t there.  As luck would have it, it was closer to being on time so my friend missed it. I boarded with my sign figuring I could just follow the crowd to the rally.

After arriving at the bus station, I met another woman walking alone and began talking to her as we walked to the rally. I told her about my TBI and some of its challenges and since she wasn’t going with anyone, we went together. Where we stood, it was impossible to hear the speakers so I weaved my way through the crowd until I got to a place where I could hear them.  She didn’t follow so I lost her.  I do hope I meet her again.

I didn’t know all the speakers but loved the energy there. I know it was a women’s march but the first one was held the day after Trump’s installation last year and so this march has morphed into a march against Trump and his administration.  Perhaps when we get another administration, it can be a true women’s march.

I saw a woman in the crowd sitting on the ground next to a child in a wheel chair. Everyone around her was standing and I was aware I was going to have to sit down as well so I plopped myself right down behind her. While seated, I could close my eyes and block out all visual stimulation, which always helps.  I also can’t stand long for a rally. I’m pretty sure if I hadn’t seen her sitting down, I would have weaved my way out of the crowd to find a place to “rest my brain.”

March sign

my sign for the march

After the program, the march began. I discovered later that four high school girls had planned it.  I don’t think any adults stepped up to help them.  The march received some criticism because we had to march on two small sidewalks instead of in the street because a permit wasn’t secured.  In spite of some of the difficulties, they did an amazing job.

After the march I was exhausted and needed to “rest my brain” before taking the bus home. I decided to go into First Presbyterian Church since I was familiar with it and knew I could get in.  After lying down on a bench in a hallway for a while, I decided my brain had rested enough so I filled my water bottle and went downstairs looking for food.  I felt a little faint so the Saturday Sanctuary volunteers gave me broth from the bottom of the soup pot and a few crackers.

The second shift of Saturday sanctuary volunteers began at 2 PM and the woman I was supposed to meet for the march, was working. She had gone to the march but drove her car after missing the bus.  There is no way I could have worked Saturday Sanctuary after marching for the stimulation overwhelmed me. I’m finally getting over not being able to do as much as others.  A former cognitive therapist reminded me that my plate is now smaller than other people’s and they can put more on it then I can.  God doesn’t care how much people can do but rather God cares that one loves others and works for justice in this world.

My friend Scott Owen works on a radio show and he asked if he could interview me about my experience. I said yes and he told me what he was going to ask.  It was fun.  Here is a tape of the interview.  The whole thing is interesting but my part begins at 2:59.

https://www.ashevillefm.org/post/afm-news-team-covers-the-2018-asheville-womens-march/

Advent

Yesterday was the first day of Advent, a time of expectation. It’s funny because I never really understood Advent as expectation before worshiping at Grace Covenant Presbyterian. When I was a kid, I expected to get lots of gifts but I knew that wasn’t what this meant. Under Mark Ramsey’s leadership, the sanctuary remained plain without all the Christmas decorations I saw elsewhere.  We sang no Christmas Carols but rather Advent hymns.  It became a sort of journey for me which I appreciated.

supermoon, Jarkarta. IndonesiaI love moons and right now, we have a super moon which happens rarely. Here is a picture of the moon in Jakarta, Indonesia with two symbols that I love:  a moon and star.  I’m aware this is not a typical Advent picture but for me it’s perfect..  I’m looking forward to contemplating what God is calling me to do next.  The moon always reminds that God is with me – even in the darkness.  The star reminds me that I’m on a journey just as the Wise folks traveled to meet the Christ child.

is morning I watched the start of the New Poor People’s Campaign in Washington D.C. with the prophet, Dr. William Barber. Leaders in every faith tradition spoke and gave support for this campaign. I’ve been very depressed about our nation’s budget but watching this, energized me.  I am on a journey.  I don’t know where it’s going to lead but God is with me.

I imagine members of this campaign will eventually do civil disobedience.. I don’t think I’m called to do civil disobedience again but I will listen for God’s voice to make sure.  I want to be part of this campaign in some way and I will wait until the Spirit moves in me to act. We sang a song at Circle of Mercy last night with words written by Br. Roger of Taize and the music written by Mark Siler.  It’s one of my favorites.

“Rest your heart in God, let yourself float on the safe waters,
Living life as it comes, with all the rough weather it may bring.
Give, without counting how many years are left,
Give, not worried about surviving as long as possible.
Rest your heart in God.”

This Advent, I will rest my heart in God.

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.

Summer Institute on Theology and Disability

The folks at the Summer Institute for Theology and Disability are going to quit allowing me to attend! When I first attended in Toronto in 2013, I pushed it too hard and had to be hospitalized. Three institutes have gone by in three different cities where Michael went as my “attendant” and I managed well. I took breaks when I needed and didn’t push overly hard.  Then came the one in Los Angeles, California on June 2 – June 9, this year.

I planned to co-lead a workshop with Joyce Hollyday on Tuesday afternoon based on the book. Whenever I have to preach or do anything so much in the spotlight, stress overtakes me. I know this so if I preach, I always write my sermon far in advance.  This helps me not be so nervous on the day of the event.  I’ve always gotten nervous but since my injury, it is more difficult dealing with my nerves.

Although I didn’t wait until the last minute to prepare for the workshop, good ideas just weren’t coming. Perhaps I was being perfectionistic as I often am but on the Friday before we were to leave, ideas came out of nowhere. I was running errands when I thought of what I wanted to say so I stopped in a parking lot and dictated my ideas to Joyce. It took me a while to pack, but when I finished; I got a burst of energy and couldn’t sit still. Instead of going to bed, I stayed up and cleaned the house.

Michael got up and said, “Tamara, you really need to get to bed for we have to leave early in the morning. I shouted at him. “I don’t want to come home to a dirty house!” and kept cleaning.  He knows when I get in manic moods like that there is nothing he can do.  He turned around and went to bed.  Finally at 1 a.m., I went to bed as well.  Four hours later, my alarm rang.  I dragged myself out of bed and we left for the airport.

airplanne

Michael and I on the plane.

I slept on the flight during the 45 minutes it took to get from Asheville to Atlanta. Then the fun began.  The airport is the busiest airport in the world.  I walked single file following Michael for it helped me to simply focus on him and block the noise and lights out.  Once on the plane I settled back and closed my eyes for the entire three and a half hour trip.

I wrote, “closed my eyes” because I wasn’t really asleep but in a sleep like state. It was a little like being in a dark cave hearing all the sounds around me but paying no attention.  There’s a three hour time change, which didn’t help my sleepy body.

Check-in time was 3 pm and it was around 11. Michael suggested we go the beach until we could check in.  I knew how much he loves water and since all I planned on doing was sleeping, I agreed.  We bought beach towels and headed there.

When we sat down on our towels, I realized it wasn’t a good idea for me to be there. After a while, I decided to go back to the car, put in my ear plugs and leaving Michael on the beach. About an hour or so later he returned and we headed to the Summer Institute as planned.

All of that sounds simple enough but it was way too much stimulation for me. but spaced out. I’m not sure how to explain it but I just wasn’t present to what was going on.

We were early and pretty much had the place to ourselves except for some faculty. We went out for dinner, returned to our car and found we had a flat tire so Michael changed it. I was really tired and just wanted to go home.  This is when I began losing touch with reality.

When we returned, I felt hot in the room. The thermostat in the room said the battery was low, and I feared it cutting off in the middle of the night. We walked back to the registration desk and ended up staying in another room.  We had other room issues too—the sink wouldn’t cut off at one point, and the shower didn’t work.  After settling in, I then couldn’t get to sleep and crawled in Michael’s twin bed because I didn’t want to be by myself.

The rest is a blur. Somehow, I was convinced I was in some sort of study that Ben Conner, one of the faculty members of the Institute, was doing.  He wanted to see if pushing folks who had brain injuries really hard helped them recover more quickly than the current rehabilitation strategies and I was the first person in the study.

At first I resisted the study, but then I thought it was important for me to not eat, drink or use the restroom since I was the first study participant and I wanted to set an example. I began wandering around the university and said some ridiculous things.  Michael called Joyce who was staying with friends before the conference and asked her to come early.

Apparently, Joyce followed me around for hours. I kept saying I had to pee but refused to do so. I said I was hungry but then wouldn’t eat.  I kept complaining about being thirsty but refused to drink anything offered.

The brain is really amazing. I was punchy and silly and sometimes said mean things.  “Joyce, I don’t like you.  Go away!” I said.  She followed me at a distance five hours tag teaming with Michael.  Two social workers and a member of the faculty met with me and agreed I needed to be hospitalized. However because I was not a danger to self or others, I was on the low priority list. It would be another 4 hours for the ambulance to arrive.

I didn’t go quietly but instead four large police officers had to get me in the ambulance. I remember nothing of this part except lying down on the cot and looking up and seeing the sky.  Michael and Joyce were both exhausted and decided there wasn’t anything they could do so they didn’t follow the ambulance to the hospital that night. All in all, Michael and later Michael and Joyce had followed and monitored me for 14 hours that day.

SITD dorm 2017DSC00924 (2)

Part of my adventure was here, in the dorm lobby

I was taken to Alhambra Hospital and put to bed. I don’t know how long I slept until waking up and eating something.  Just like Toronto, I only needed rest to become myself again.  The difference in the two health systems was telling.  I had left my insurance card at home so the social workers were delayed in calling the medics because they had to research insurance to get confirmed coverage. When I was hospitalized in Toronto, they admitted me without any proof of insurance.  In California, sometimes meals were eaten with the television blasting.  I asked for it to be turned down and was told, “Well, they’re watching it.”  I left the room and ate out in the hall.  In Toronto I was in a quiet room in a quiet area.

Both Joyce and Michael were afraid this event would throw me into a long depression as the event in Toronto did. There were at least 2 differences this time: I had an “assistant” with me to catch my decline early, and after it was over I understood what had happened.  I pushed too hard which caused this breakdown.  It was bad for all of us, but since I don’t remember the worst of it, the memory is worse for them than it is for me.  All I know is, I don’t ever want Michael and others to have to go through that again.

The frustrating part is, I know what I need to do to prevent it and I always do, accept for in Toronto and in Los Angeles. I need to get serious about not pushing myself at the Institute. This means not taking flights at strange times, eating when necessary and sleeping.

20170607_143028

Joyce and I preparing for the workshop

When I was released from the hospital, the time for our workshop had already past. Bill said there was a slot on Thursday if we’d like it, so we agreed and lead it then.  It went really well and I got the idea below from one of the participants.

 

I’m going to look into the possibility of getting my presbytery designation to be something like “Minister of Vulnerably.” I have learned that showing my weakness allows others to show there’s as well.  In our hectic society, this is not a bad thing.

P.S. The folks at the Summer Institute for Theology and Disability are NOT going to quit allowing me to attend. They had immense understanding. It is their gift and it is what draws me there every year. During that escapade, I was living what they were talking about in their plenaries and workshops.

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.

Cognitive Overload Weekend

I went to Grace Covenant Presbyterian Church’s service day at Haywood St. Congregation on Saturday.  I never go to those days because I know there will be too much stimulation for me. When I’m cognitively overloaded, I become sluggish, irritable and unable to think.  This time, there was a job where folks could pack meals which seemed like something I could do. I arrived at 9 AM for that’s when the schedule said the packing would begin.

Actually, I arrived at 9:10 and by the then, the parking lot was filled. It took a few minutes to locate overflow parking. I drove by it and had to stop to ask a passing pedestrian for directions to the lot. He didn’t know so I drove back to the church to ask. I was then told I could park right across the street.

Dealing with directions always weakens me so I didn’t start out fresh but decided to press on. I figured I would walk right in and begin work. No such luck. We weren’t supposed to start until 10.  I knew I had limited cognitive energy which I didn’t want to spend talking to folks in a noisy room for 45 minutes so I looked around for something else to do. I worked in the garden but of course I hadn’t brought any garden tools so I had to spend time finding some. I started weeding and it began to rain.

Haywood Road work dayI left my ear plugs in the car, my mistake for I always bring them, so I couldn’t do my “rest my brain” routine. I went to the packing room and the leader had already begun his spiel. He told stories about folks needing food and how these packets would be used. Everyone stood around the tables listening but I found a chair and closed my eyes. I could at least block out visual stimulation.  Finally, we started but he played loud upbeat music to energize folks and make it fun but it was too much for me.  I stayed as long as I could but at 10:40 I had to leave.  I don’t fault the leader for his words were important and playing loud music works for most people in that environment.

When I got to the car, I put in my ear plugs for a while and when I returned home, I sat on the couch with my ear plugs in for 1 ½ – 2hours resting my brain.  I always plan ahead for events but many times this isn’t possible.

The next morning, church went the same way. I ended up having to be in several places where folks chattered. I left the room when I could but on Sunday, the church doesn’t have many quiet places where I can go to get away from the stimulation.

When I have days like that in a row, I am wiped out. I’ve learned to relax for the next few days in order to let my brain recover. If I don’t, it only gets worse. For me, overstimulation is the most challenging aspect of TBI and it seems I’m in these situations often. In the past, I’ve stopped participating in things, but I got bored and felt as if I wasn’t using my gifts.

Now, I monitor what I do and rest if I need to. It means skipping things as I did on Saturday afternoon. Folks may not understand and might think I’m lazy but for me, this is required. I’ve mostly stopped worrying what people think! Notice I wrote “mostly.”

The Lord is my Shepherd

This past Wednesday, I attended the Haywood Street Congregation’s worship service which is at 12:30 pm. This congregation is Methodist and every Wednesday they have a meal for folks who are hungry. One of the chef’s in town encouraged other chefs to donate different meals a couple Wednesdays each month so the food is always excellent. I never attend these meals because they are very chaotic. In fact the church’s motto – “Holy Chaos” – was coined by Rev. Shannon Spencer, a former pastor there. One day, I will attempt to go but I may not attend worship due to this “holy chaos.” (Too much stimulation for me!)

Rev. Brian Combs shared the homily which is in a conversational style. He makes a few statements and then folks are invited to respond. I really love it because most of the comments are made by folks with no theological training. Many live on the streets or formerly did. The comments, raw with so much wisdom, are just what I need to hear. I feel so comfortable in a worship space with folks who know what it is like to struggle for every meal and to walk thrugh the wildernesses of life.

image-3-206x300[1]

Brian began with the following statement which he made without notes. He posted a copy of the homily on their website and he began:

“The analogies for God are many. God is creator, painting every empty canvas with brushstrokes of beauty, the heavenly potter fashioning all that’s ‘out of sort’ back into shape. ….. God is gardener sowing seeds in every indiscriminate direction, believing that new life can grow in between the cracks of concrete just like in the fertile fields.”

“But of all the ways to understand God, it is the shepherd that’s most enduring.” He then asked, “Why do we choose this analogy for God?” Several folks responded: “The shepherd will lead us.” “We need reminding that we’re as helpless as sheep.” “Shepherds know their sheep by name.”

I couldn’t help remembering a first person sermon I preach about Hagar who was thrown out into the wilderness by Abraham and Sarah. (Gen. 21:8 -19) The first time I preached it was as a student at Central Baptist Seminary in Kansas City in the late 80’s. I then used it as my senior sermon at Columbia Seminary in Atlanta in 1992. I have since preached it many, many times. It’s short, 10 minutes, which allows time for other things. I love preaching it and hope to have more opportunities. In it, I have Hagar say:

“It is there in the wilderness where we discover the comfort and the courage of God’s love. Often it is in our deepest darkness where we find God’s power and creativity. The 23rd Psalm contains a beautiful image.”

“God, the hostess, has prepared a feast for us, the travelers. A warm fire is burning in the fireplace, as the food is set out on the table. You would expect this feast to include all our friends and families but this feast is different. It is special. For there at the table sit our enemies. Those people that have hurt us and caused us to wander. The folks with whom we cannot get along.”

“And there are other enemies. Confusion. Blindness, Miscarriage, Brain injury. They are all there at the table. God takes some healing ointment and lovingly rubs it onto our sores. Our wounds no longer hurt. The bruises remain and we continue to bleed, but it is warm by the fire.”

“When you walk through the wilderness, know that God is with you. God will comfort and you will be changed.”