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.

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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.

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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.

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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.

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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.

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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.”

It’s Time

I’m finally ready. It’s taken a little less than 20 years but it is time.  I’m going to sell my violin and my viola.  I can’t play them so they are stored in my bedroom closet gathering dust.  Taking them out of the cases for this picture was painful.

The smell of the instruments brought back so many memories. violin and violaI thought back to my Hyatt Regency days when I was one part of the accordion and violin duo, Bellows and Bows. We played for breakfast and for lunch five days each week and for the Sunday brunch. I do remember the surprised looks on folks faces when we came out as they enjoyed their pancakes or eggs. We also played parties and other events.

I remember my only audition for a professional orchestra although I don’t remember the city.  (I played in the St. Joe Symphony for money but that one doesn’t count) I stayed at a hole in the wall motel because it was cheap.  I don’t remember the audition itself but I do remember coming home, disappointed at how I had performed. Questions flooded my mind.  “Do I want to spend my life auditioning for orchestras?”  “What if I never get in one? “  “What if I spend the rest of my life teaching and doing freelance work?” On top of that, my right hand was not working right which caused me not to play as well as I would need to play to get into an orchestra.

Depression hit as I thought about how music had been my life. A pastor suggested I try going to Central Baptist Seminary while keeping some of my students. If I liked it, I could transfer to a Presbyterian seminary. I did this and began to feel a call to leave professional music and become a minister.  When I was sure, I left Kansas City and all my music contacts and moved to Atlanta to attend Columbia Theological Seminary.

After graduating and finally receiving a call to Mount Vernon Presbyterian Church, I played in a community orchestra. However, I injured my right hand in the accident so I couldn’t play.  As time went on I could play a little but it didn’t sound good to my ears.  While in Asheville, I played only one time – in a skit for a clown troupe I had joined.

On Easter last Sunday, something clicked in my mind when a string quartet played in the service. As I listened, I realized the time had come for me to sell my instruments.  I will get them appraised and then I will sell them.

It’s time.

Since I can only work on my book in spurts, I’ve been trying to find some way to fill the rest of my time.  I’m working to improve my swimming but that’s not enough so I decided to learn Spanish. I’ve been using Rosetta Stone’s Spanish tapes and other resources.

Yesterday, I was sitting on my sofa, working on Spanish when the phone rang. It was TJ.   Something physically had happened to her and she needed someone to pick up her prescriptions since it was painful for her to drive.   She asked me.  I had already decided to work on a Palm Sunday blog post and my Spanish. I don’t do well with change. My heart sunk.  I didn’t want to turn her down but I knew she really needed help and I could do it.

As we talked something shifted in me and I wanted to help her. My immediate reaction to change is always negative. However, when I give it time, I often come around.  I had to go to her house, pick up the prescriptions, then go to the pharmacy downtown.

TJ’s neighborhood is very confusing. People without spatial orientation issues have trouble finding her house.  Plus for some odd reason the GPS leads to another address.  She did tell me where on the route I could begin using it though and I did.  I brought Sparky since he loves going to new places.  This is a picture of him in the car.

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Sparky makes a squealing, whining sound when he’s excited. I tried listening to the woman’s voice on the GPS as Sparky squealed.  It’s hard to explain what happens to my brain when I go in circles as I did then.  I feel spacy and unstable.  At one point, I noticed I was passing a water tower for the second time.  This GPS doesn’t say “recalculating” when you take a wrong turn. It automatically makes the change.  Sometimes this means circling back and going the same way again instead of back tracking to make the correction

Using my GPS, I found Asheville Discount Pharmacy downtown. TJ said I could park in the “no loading” zone with my flashers on and run in to get the prescription. Into the store with Sparky, I went. He loves new places and he’s a friendly and happy guy so of course everyone wanted to pet him.  When it was time to go back to TJ’s, the GPS took me a different way home.

The trip took me a long time. However, I felt good.  Lately I haven’t been pushing myself and it’s a fine line between pushing too much and not enough.   If I push too hard, I become exhausted.  If I don’t push hard enough, I get bored and depressed.  I felt good then but “rested my brain” a little before going to choir.

Come Healing

Two and a half weeks after the election, I’m finally getting over my shock. I’ve read many reasons why Trump won: Voter turnout was low; Liberals did not listen to the hurting conservatives; Democrats were frustrated and didn’t vote; and on and on.  The Sunday following this disastrous day, Ken Sehested preached just the sermon I needed to hear. (Isaiah 65:17-25; Psalm 118; Luke 21:5-10)

The Luke passage lists some of Jesus’ warnings about what is going to happen. In verse 19 he closes with the simple words: “By your endurance you will gain your souls. So we have this warning; Trouble – no getting around it.  And we have this counsel: Endurance.  What will that look like?”

Ken goes on to say that Trump didn’t generate the hatred we see today. Rather, “he focused it.  He voiced it.  He gave it shape.  But the anger was already there, and we are responsible for addressing it with something more than shouting and threats.”  He said there are many angry people now and they probably don’t care about Trump’s actual policies.  They saw in Trump someone who might save them.  Someone who might help them.

He quoted Parker Palmer: “Beneath the shouting, there’s suffering. Beneath the anger, fear. Beneath the threats, broken hears.  Start there and we might get somewhere.” There is a whole lot of fear, anger and suffering in our world now. Only half of our population voted. Half!  People are depressed and don’t know where to turn and Donald Trump looked like someone who could help.

I have a feeling when they see what happens in the next few months, they’ll regret their choice.

Ken gave suggestions for how we may endure. We need to listen attentively to the anger and pain of those around us.  This isn’t going to be easy, but it must be done. Both sides need to tolerate the dissent around us.  I need to listen but I also need to be heard.  This will be a challenge for me because of my difficulty in managing my emotions.  I become angry so quickly but I must be prepared to leave the room when I feel my emotions rising and return when they are under control.

His final suggestion is found in the Isaiah text with its words about a new heaven and a new earth. The wolf and lamb being together. We need each other in order to persevere. We need to return week after week to our communities of conviction.  He shared a Mexican proverb that says, “They tried to bury us.  They didn’t know we are seeds.” We need other seeds so we can grow together.

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Following the sermon, a group of singers and instrumentalist (I sang) sang an arrangement of Leonard Cohen’s song, “Come Healing.” I had a little trouble getting through it and had to drop out for a few words. But it helped so much to sing the chorus which says “Come healing, Come healing, Come healing of the Spirit, come healing of the limb.”

Our country needs healing. Come Lord Jesus, Come.