Spiritual Reflections on Living With Traumatic Brain Injury

Summer Institute on Theology and Disability

July 4, 2017

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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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