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.

Dancing in the Rain

href=”https://nogginnotions.files.wordpress.com/2015/06/dancing-in-the-rain.jpg”>Dancing in the rain

My cognitive therapist told me I need to make sure I don’t use too much cognitive energy in a day or I will be tired and unable to function very well the next.   I must schedule my day so that I allow my brain to rest cognitively. This means doing things like listening to music, working in the garden, and swimming, playing around on Facebook or taking a walk with Sparky.

I have a personality that always wants to improve on whatever I do. For example due to my hand injury, I haven’t been able to work in the front yard for two years so it is overgrown and a bit messy. Instead of simply working in the garden by pulling weeds or grooming the plants, yesterday I spent time thinking about how I wanted things to be. While it’s true I need to plan and organize, it doesn’t need to be done on the same day I’m planning other things for this is when cognitive overload overwhelms me.

Today I’ve been tired and not able to think very clearly. Life isn’t about being overloaded and tired all the time especially since the only time limits I have are self-imposed. As I continue working on the book and the garden, I’ll try to remember that life is short. I need to stop and dance in the rain.

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.

Internalized Racism

Must stop worrying. I’m worried about how to best serve God. I’m worried about current responsibilities. I’m worried about my double vision. I’m even worried about the Prickly Pear cactus in my front yard because it’s not looking right. I’ve done everything I can at this time for each issue so I need to stop obsessing! Just stop.

The bus stop by my house.
The bus stop by my house.

 On Wednesday night I had a choir rehearsal at First Presbyterian Church downtown at 7:15 PM. I didn’t have a ride but decided to take the bus since the route is an easy one. I took the early bus because it tends to run late and I wanted to be on time for rehearsal

Riding the bus put me in touch with my internalized racism. I don’t like to admit this but because of my background as middle-class white women, sometimes my stomach clutches a little inside when I see a person of color. I know how to hide this but I hate it. I made a point to talk to the man in question about general things which is so important when one gets into this state.

Doing this used a lot of cognitive energy though and I needed every ounce of it for the rehearsal. I often think, “Is it too much for me to go to that meeting?” Will I be overloaded if I go to that rehearsal? If I make that phone call, will I have enough cognitive energy for my meeting?” One of my challenges is monitoring cognitive energy and stimulation. Facing my internalized racism is hard for anyone because it takes a lot of self- awareness as well as cognitive energy.

Since I haven’t taken the bus in a while, I didn’t realize it doesn’t go into the station now because of a sinkhole so I missed my stop. As time went on, I realized we were going back to West Asheville. I asked the driver if we had stopped at the station and he told me about the sinkhole.

So I ended up having to ride the whole route again which took an hour. When I got to the rehearsal, I was exhausted and grouchy. I had to get used to a new environment and the Sanctuary had spotlights which shone directly into my eyes. To make matters worse, the guest conductor seemed impatient and testy. Following the rehearsal, I just wanted to go directly home and was under the impression this would happen. I then discovered my ride needed to return to the church due to car pool arrangements.

I could feel my emotions intensifying quickly which happens when I’m tired and frustrated. If I push myself much beyond that point, I lose complete control of my emotions and lash out at whoever and whatever is there. I’ve learned how to catch myself prior to this point by leaving the situation but this wasn’t an option.

Fortunately, a couple of folks stepped up who are aware of what happens when I get overstimulated and offered to take me home on their way to the church. I really was on the edge so I’m grateful this happened.

If you have a brain injury, how do you react when you are overstimulated? What compensatory strategies do you use? Some folks do not have this challenge as much as I do so it may not be a problem. Its clear folks without brain injuries also have limits. If that is you, what are your limits and how do you take care of yourself?

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 II

I’ve been listening to the tapes I made of the 2014 Summer Institute on Theology and Disability back in June. It is almost impossible for me to take notes and listen to a lecture or presentation at the same time due to my brain’s inability to divide its attention which is why I tape them. It takes quite a bit of time going back through the tapes to take notes since I have to pause the tape in order to do this. I can’t imagine going to school now for it would take me forever to earn a degree!

Attendees who were Presbyterian or from another Reformed body.

Attendees who were Presbyterian or from other Reformed bodies.

I so enjoyed being around others involved in the disability community for we speak the same language. The Institute values the experiences and opinions of people living with a disability which isn’t the case back in the “real world.” After every speaker, there was a time for questions. There are the usual academic questions which one gets in a seminary classroom, sometimes asked by people who have disabilities and are serving as ministers in a faith community.

However, what I really liked about this time, were the questions from folks who have difficulty speaking due to their disability. They often spoke slowly and with great care. One of the challenges I have due to my TBI, is concentration. Some of the neurons in my brain were destroyed in the accident so the remaining ones, must do double duty. As a result, concentrating on something for an extended period of time, wears me out.

Here the issue of different challenges for folks who have different disabilities, clashed. I need someone to speak clearly so it doesn’t take a lot of concentration for me to understand them. Someone who has a disability which impairs their speech must speak slowly which I imagine is hard to do. However, it takes real concentration for me which causes cognitive overload. In our regular lives, people are too busy to take the time to listen and understand so I appreciated that time was allowed for this despite my cognitive overload.

What I really liked about the Institute is, everyone knew there are differences in disabilities. My challenges are different from someone else’s and the important thing is to take the time to really listen and understand one another. This is something those of us who have disabilities can teach the rest of the world, if they would only pay attention to us.

Care Partner

I’m making plans to attend the Institute on Theology and Disability in Dallas in June of this year.  Although it is an expensive trip, I really want to go. It’s one of the few places where I feel valued for my insights as a person with a disability. I know I am respected for what I do but sometimes I don’t FEEL valued for what I have to offer. There I felt valued and respected and it felt good.

bookI am reading Living Gently in a Violent World: The Prophetic Witness of Weakness by Stanley Hauerwas and Jean Vanier with an introduction by John Swinton. John spoke at last year’s Institute and he is wonderful. Prior to becoming a University professor, he worked as a psychiatric nurse and then as a mental health chaplain working “alongside people with various forms of mental illness and intellectual disability.” (from his introduction)

I love the way he described his work. He didn’t write, “I helped people who had intellectual disabilities” or “I served folks with various forms of mental illnesses.” Instead, he wrote, he “worked alongside people ” who have them. This is what those of us who have disabilities really want from our community. Sure, we need support but we don’t want to be belittled or “looked down upon.” Our disabilities have allowed us to gain deep wisdom. If folks would stop trying to “help” us but really listen to our actions, words and deeds, we would have much to offer.

As much as I loved the Institute last year, it was rough for me. Dealing with the sounds in the noisy airport, bus and hotel (overstimulation) weakened me. Being in a different environment threw me since change is hard for most brain injury survivors. I need to have my environment exactly the same or I become cognitively overloaded.

By the end of the week, I had pushed too hard and began acting strangely. One night I called the director at 2 AM and he met me in the hall wearing his robe. Who knows what I had on! J I roamed the hallways some nights and then forgot where my room was. The hotel staff wanted the director to hospitalize me which he really didn’t want to do. At one point, I got so tired I simply lay down underneath a table to take a nap. It’s all a blur but it got to the point where he had no choice but to hospitalize me.

It was quite an experience which I may write about later. To make a long story short, the hospital had to call my husband back in Asheville to come to Toronto and get me. I really didn’t know much about what was going on other than I remember being really, really tired. It was actually funny because when I began to be more aware of my surroundings, I wanted to get out of the hospital. However, since it was an involuntary stay, I had no choice but to wait for Michael.

Michael is forever calling folks and then turning off his cell phone. I tried to call him but he never answered. I started to get concerned and called Mark Ramsey, one of the pastors at my church but I couldn’t get him either. It turns out, Michael figured he had 48 hours until I could be released so he decided to turn off his phone and go to a Quaker Meeting in Toronto! When he finally turned it back on, he had quite a few frantic messages – at least mine were frantic.

I must admit to some embarrassment about attending this year especially since Michael will come with me as my “attendant.”   I’m not happy about this but I know deep down I need someone to be there with me so last year’s escapade doesn’t happen again. One note about language. I HATE the term “caregiver” and “attendant” isn’t a whole lot better. The term I prefer is “care partner.” Michael isn’t my “caregiver.” He’s my partner and it seems to me this is a much better word for an adult who needs a little help.

In spite of my embarrassment, I’m going to attend with my head held high. People need to know what can happen when someone with a brain injury (or any disability) pushes too hard. People also need to know that it’s okay. The only way they can learn this is if I accept what happened, make the necessary changes and then move on.