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.

Of What Are You Certain?

At a GCPC choir rehearsal Wednesday night, it occurred to me that my depression has lessened. When this happens, I feel more energetic and alive. I haven’t been able to connect much on any sermons preached lately but I was especially moved by Mark Ramsey’s sermon this past Sunday. I read the sermon again yesterday. One really needs to listen to a sermon rather than read it and I wish I hadn’t lost the notes I took on Sunday, for reading it didn’t stimulate my spirit as much as hearing it did.

Mark began by saying, “The God we come to know through scripture creates promises, delivers, commands, and leads.”   A few weeks ago, I would have scoffed at these words and said “Yea, right. What do you know about my life? I’m the one living it and I don’t feel God’s Spirit at ALL.” However on Sunday, I had a different feeling. “Okay, he says God delivers and leads. Even though I’m not sure right now, I’ll hope a little longer.”

Interspersed with stories, he asked over and over again, “What are you certain of?” I’m certain that God is calling me (as God calls everyone) to some sort of ministry. I don’t know what that is and when I sink into darkness I have to keep reminding myself that “God makes a way in the wilderness and rivers in the desert.” (Isaiah 43:19)

Message of PsalmsI thought about Walter Brueggemann’s comments on the Psalms. He wrote in a 1984 commentary that scholars have discussed how the Psalms are organized around three different themes: Psalms of Orientation (see Psalm 145, 104, 8 for examples), Psalms of Disorientation (Psalm 74, 86, 35), and Psalms of New Orientation (Psalm 30,138, 96).  Sometimes the Psalm will go through a couple of different themes as Psalm 13 does below.

“How long, O Lord? Will you forget me forever? How long will you hide your face from me? How long must I bear pain in my soul and have sorrow in my heart all day long?

How long shall my enemy be exacted over me? Consider and answer me, O Lord my God! Give light to my eyes, or I will sleep the sleep of death, And my enemy will say, “I have prevailed”; My foes will rejoice because I am shaken.”

“How long must I live this way”, are my own thoughts. “Why can’t I remember people’s names? Why do I become cognitively overloaded so frequently? Why do I have to ‘rest my brain’ all the time? It’s not FAIR!” This is when I am in the darkness.

However, in the next few verses, the Psalmist has a shift in perspective:

“But I trusted in your steadfast love; my heart shall rejoice in your salvation. I will sing to the Lord, because he has dealt bountifully with me.”

It isn’t clear what happened. I suspect the Psalmist went through the darkness for a long time. I bet she felt sorry for herself and felt defeated. I suspect she almost gave up but somehow, she trusted in God’s Spirit and things changed. When this happened, she is able to again, sing God’s praises.

When I’m in the dark places, I read these Psalms to remind myself things will get better. That’s what happened this time. I am certain that God creates promises, delivers commands, and leads me through the wilderness. Even in the darkness, I am certain. I have to repeat this to myself over and over and over and over again. But I am certain.

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.

“One of Those Days”

Singing in the choir at Grace Covenant Presbyterian Church this morning was “one of those days.” We warmed up in the sanctuary which meant going upstairs to the choir room first and getting my bulletin and robe. I already had my music since I take my folder home every week. I use a large print bulletin for two reasons. First my vision isn’t good and second, I can’t hold the hymnal like other choir members and the hymns are printed in those bulletins.

There was no bulletin in my music box in the music room. I said a few choice words before realizing I was going to have to get one downstairs that wouldn’t be three-hole punched. Well, it was there but I had looked in the wrong box. I didn’t put my robe on because it is unbearably hot.

Sherrie McCleary-Small modeling our wonderful choir robes.

Sherrie McCleary-Small modeling our wonderful choir robes.

These robes are the exact style my husband wore when he was an alter boy in the catholic church in the 60’s. We need new robes!  Here is a picture of them.  I figure I would spend time complaining about it on my blog today so I can get it out of my system. I suspect other choir members are tired of my complaints so perhaps writing them down will keep me from complaining so often!

I joined the choir for the rehearsal in the sanctuary. Only a couple of us weren’t wearing our robes which I don’t really understand. I would roast if I wore the robe so early before worship.   Any day now, I will probably have hot flashes but they haven’t started yet so I don’t even have that as an excuse! Other choir members have told me the robes are hot as well and even in winter women often wear sleeveless shirts to try and keep cool.

After rehearsal, I went downstairs underneath the choir loft to “rest my brain.” I do this by putting in my ear plugs in a quiet place and closing my eyes to avoid visual stimulation. I put both pieces of my robe on before remembering I needed to punch three holes into my bulletin. I figured the office would have a three whole punch and it was only one floor up so I looked there first. No hole-punch. “Great,” I thought. “Now I’m going to have to go all the way upstairs to the choir room to use the hole-punch.”

I headed to the elevator to keep from having to take the stairs, pushing the wrong button so it stopped on the wrong floor. After getting to the correct floor, I punched the bulletin and went back down to my quiet place. By then I was sweaty so I fanned myself with the bulletin. I didn’t have any time to “rest my brain” because I heard the first hymn. I always enter from the back and don’t process in with the choir because the narthex is so noisy and the stimulation is too much for me.

I have a zipper compartment where I keep my chap stick (I’m addicted to it), a pencil, earplugs and Kleenex. I even keep throat lozenge there as well. To go right along with the rest of the morning when I was finally seated, the zipper on the compartment broke allowing the contents to fall out. Of course they didn’t all fall out at once. First the chapstick fell out which another choir member returned to me. Later, a throat lozenge dropped followed still later by the ear plugs. The choir sits in the front of the sanctuary facing the congregation and it was all I could do, not to make faces. In fact, I probably did!

I have always been sort of what is called a “space cadet.” I’ve been known my whole life for dropping and losing things. Now, I always try to allow extra time for this reason because it is worse now. I must admit, this morning I felt a little like Lucille Ball.

 

 

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

Busy, Busy, Busy

After looking at me I’m getting used to hearing folks say, “you seem fine to me.” I know I’m in a complicated situation for I am able to do much that other brain injury survivors aren’t able to do yet hidden challenges get in the way. I can’t handle the busy life that seems to be the norm for everyone in our culture. When I do too many things, I become confused. I have to “rest my brain” which makes scheduling things back-to-back, difficult and in some cases, impossible.

However I can still accomplish quite a bit; it’s just a matter of balance and accepting that what I can do now is different from before. Our culture views “busyness” as the norm but it doesn’t have to be this way. My own insecurities sometimes tempt me into believing that everyone else is “better” than me because I’m not as “busy” as they seem to be.

One of my Facebook friends recently posted a comic written by Bill Watterson – the artist who brought the world Calvin and Hobbes. You may remember Watterson stopped drawing the comic in order to pursue other things. Here it is: : http://imgur.com/r/pics/66DxiHX – copy it to your browser. I hope you’ll take the time to look at it for it really is extraordinary. One panel contains the quote, “Ambition is only understood if it’s a rise to the top of some imaginary ladder of success.” We or shall I say I, do seem to have some imaginary ladder of success.

Here is a popular quotation by the Dali Lama.Dali Lama quote In my case, it is true. I’m 52 years old and I’ve already lived over half my life. I don’t want to be so worried about the future that I don’t enjoy each day now. Erik Kain in an article written in 2011 for Forbes magazine believes the Dalai Lama is wrong. http://www.forbes.com/sites/erikkain/2011/10/12/the-dalai-lama-is-wrong/2/ He thinks the Dalai Lama is speaking from a place of enormous privilege about a world he cannot even fathom.

While I understand his point and know that many, many people have to work hard in jobs they don’t like, just to support themselves and their families, many Americans are working much harder than necessary. Do we really need three television sets, the best smart phone imaginable, expensive food and vacations? Do we really need a whole closet full of clothes and the most expensive car? I know that raising children is extremely expensive and our cultural norms do not make this any easier but I fear we spend too much time trying to get the best of everything when we need to be figuring out how to work a little less.

Do you feel overextended and see no way out? In today’s harsh job market, do you feel as if you have no choice but to work so hard? If you have a brain injury, do you feel like the world is passing you by? How do you handle the busyness of our society? Feel free to share your experiences in the comment section.

Journey

These past few weeks have been an interesting part of my journey. I went to the Summer Institute on Theology and Disability in Toronto, Canada. I was nervous about going for two reasons. First, I had never used my passport before and second, I felt I would be out-of-my element in participating. I was nervous but doing civil disobedience in Raleigh a couple of weeks before, had given me courage to do anything.

I’m still processing it and probably will be doing so for a long time. For this reason, I won’t be writing much about it at this time other than to say, it was an incredible experience and I so look forward to attending the next one. Theology and disability is a growing movement and it was so wonderful to be around others across the world involved in it. My interest has been ignited and I hope to continue with this.

I’m so very tired of hearing brain injury survivors say, “God allowed this to happen to me for a reason.” I feel I’ve gained some knowledge and contacts, so I’ll be able to think more deeply about brain injury and theology. I really did push myself by going and it is clear I still need time to recuperate from it. However, I do know that given enough time, my body will be back to normal. Who knows? Perhaps I’ll even do some writing about theology and brain injury for not much has been written about it.

I do want to say one thing about this Institute, though. I stayed at the Chestnut Conference Center at the University of Toronto. It was a dorm for the university which made for a rather interesting stay. Some of the dorm rooms are rented out for conference participants and other visitors to stay in while visiting Toronto. Michael flew up to be with me at the end of the conference so we stayed a couple of days beyond the Institute.

On our last night there, we were both exhausted and tried to get a good night’s sleep before traveling back home. I had a direct flight there but our flight home meant going to Boston and changing planes. At about 6 AM, the fire alarm went off. We were on the 19th floor and neither one of us wanted to leave our beds for a fire alarm – Michael in particular. Finally, it became clear that it wasn’t a false alarm and we had no choice but to walk down the 19 floors to get outside. I couldn’t help thinking about 9.11 as we walked down each flight.

dorm

Here is a picture Michael took of the Chestnut Center after we evacuated that night. I couldn’t handle the stimulation of the crowd so we found a quiet place away from it. I had grabbed my earplugs (I have no idea why I thought to do this) and put them in to “rest my brain.” The fire trucks came but after a while, we were given the sign to go back in. We thought it would be faster just to walk the 19 floors back up then wait for everyone to crowd in the elevators so that’s what we did. It’s funny but we were the only ones who walked back up. At least we got our exercise!