Every now and then I get bummed. Sometimes, I think about simply staying home all day, reading books or checking Facebook and Twitter. There’s enough information flying around that I know I could fill my time just fine.

When I first moved to Asheville, that’s just what I did. I had pushed myself too hard in Atlanta and I didn’t want to do the same thing here. However, I got bored. Like other people of faith, I am called to work for justice and peace in whatever way I’m able. These are important words for me to remember- “in whatever way I’m able. My brain injury has given me many limitations but this doesn’t give me a reason to avoid working to bring God’s reign in the world.

One caveat here though. Every person’s brain injury is different and comparing what I’m able to do with another brain injury survivor, is not possible. I know survivors who are unable to speak or unable to use their arms and legs. They have a call as well but it is different from mine.

Try harder or walk awayThe saying on the left does not exactly work for brain injury folks. If I simply walked away from something when it didn’t work, I would be walking away from things often. The statement needs to read “…choose whether to walk away or TRY SMARTER.” If doing something differently – perhaps even a couple of different ways – doesn’t work then walking away is an option.

For years I sat in the congregation at Grace Presbyterian Church and thought about singing in the choir.   Since I can no longer play violin, music has always been painful for me. Even though I sing, I wanted it to be with a group where the director knows how to rehearse which isn’t always the true in churches. At GCPC, this isn’t the case.

Finally three years ago, I decided to sing in the choir and it really touched on the musical parts of me that have been dormant. I love singing in the choir! However, I had to do things differently in order to participate. This meant not processing in with them because to do so meant standing in the narthex which is very noisy. I began staying in a room below the sanctuary and doing my “resting brain” thing until it was time to enter. Along with a couple other adjustments, this worked so instead of quitting, I worked “smarter.”

Of course I must always determine whether my adjustment affects the projects at hand in a negative way. In most situations, this isn’t the case. Usually it just involves me being different than others and I can live with that. However, I do try and make it clear that if someone has a problem with this, they should speak to me about it and not talk behind my back. Unfortunately, I’ve discovered folks like to talk behind people’s backs!  I’ve learned that’s their problem and not mine, although this is easier to write than to believe!

In order to participate in things, I also must determine if my adjustments are harder on me than necessary. I visited a man on death row for years in Atlanta and it was very hard for me. I’m glad I did this but in my current situation, I would not make the same choice.

If you have a brain injury, how do you work smarter and not harder? Even if you don’t have one, I’d be interested in your comments.

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.

Brainstormer’s Collective

A couple of years ago, Michael and I began a support group for brain injury survivors and their supporters. . Since I don’t drive at night, we met at a church within walking distance to our home. We called the group “Brainstormer’s” and we had some great meetings. The group never really took off though and when I began singing in the choir at GCPC, we needed to change our meeting nights. We weren’t able to find another place close by where we could meet until recently.

KW_nKarios West is a community center that just opened here in West Asheville. It used to be a sewing store that went out of business. The founders based the model on a place in Cuba. Space is offered free to groups that fit their vision and our group does.

We met again for the first time on November 6 and plan to meet the first and third Thursdays of each month. When we attended the Summer Institute for Theology and Disability, Michael took a workshop on leading support groups. There he learned it was best not to call them “support groups” for this implies neediness. In the past, we called ourselves “Brainstormer’s Support Group” but decided to rename ourselves, “Brainstormer’s Collective.”

We met last Thuraday night and spent some time talking about our mission. This will be an ongoing conversation but we want the collective to be more than simply a place where we can share our struggles. We will share resources, work on advocacy issues, and even educate the general public about brain injury.

The most important thing about it though, is that it is led by survivors. Michael and I both have brain injuries and we hope to encourage everyone to share in leadership. Too often in the brain injury community, projects and activities are led by people who aren’t survivors themselves which puts a different slant on things. I get tired of being “talked down to” which people do unintentionally.

So the Brainstormers Collective has been born. Time will only tell what happens next.

New Water Heater

water heaterOur hot water heater broke a couple of weeks ago. We decided to go with a solar water heater as well as solar panels on the roof. Thank- heavens for tax credits or we wouldn’t be able to afford it!  However, this meant it took longer to figure out which water heater to get. Here is a picture of the old one. It probably looks like every water heater you have ever seen but I couldn’t resist taking a picture.

Michael looked at several different water heaters and found one he liked. The workers just told me it wasn’t the water heater he ordered. Apparently the wrong one was delivered and they didn’t realize it until they had moved it in. So Michael and I talked by a phone. They going to knock $200 off the cost of it and even though Michael was concerned about the noise it might make, we decided to get it. I’m glad because this business of boiling water to wash dishes and take sponge baths is getting on my nerves.

pots on stoveIn the process of boiling my water for two weeks, I’ve realized how much water I waste. Many parts of the world must do this all the time. Americans are “clean-freaks” and this experience has helped me realize how unnecessary using so much water really is.