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.

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!

SUMMER INSTITUTE ON THEOLOGY AND DISABILITY

moon God is watching you
I received this picture from a friend and it seems just right for how I feel today. When I look at a moon, I get such strength and courage. It’s a visual reminder to me that God is always there and I’ll be just fine. Since I needed this reminder, I wore my moon earings to a voice class I had last night.

I’m excited and nervous at the same time since I am going to Toronto next week for the 2013 Summer Institute on Theology and Disability. It’s a little “out-of-my league” but I’ll be okay. The presenters have written books, taught classes and done research on various aspects of theology and disability. Then there’s me: a Presbyterian minister from Asheville, North Carolina who has a brain injury and is interested in the field. I’m not even sure I’ll completely understand all the presenters but that’s okay. Just being there and soaking it all in will be extraordinary.

I have a huge tendency to worry. “Will I get on the wrong plane and end up in Cuba?” “Will my spatial orientation issues mean I’ll be lost all the time?” “Will my tendency to be what is known as a “space cadet” shine through?” “Will I be able to use my ear plugs and ‘rest my brain’ enough?” “Will I try to do everything, knowing full well I have to skip some things in order to make it through the entire week?”

Since I’m now taking swim lessons and am improving my stroke, one of the ways I handle stress is gone. I used to swim laps and then repeat a phrase over in my mind in rhythmic motion. Now I’m too busy concentrating on my stroke to do this. This morning as I was doing my morning walk with Sparky, I decided to use the time to repeat part of Romans 12:2 “Not conformed. Be transformed.” Over and over I said the words as Sparky trotted beside me.

What happened? I calmed down. I realized it doesn’t matter if I don’t understand everything. It doesn’t matter if I can’t stay for an entire presentation due to cognitive overload. It doesn’t even matter if I miss a few presentations because I need to be by myself for a while. I have to do what I have to do to take care of myself and trust others are doing the same. I suspect if I don’t conform to what I “think” is the right way to be, I will be transformed.–more–>

Moral Monday 6.24.13

Somehow I ended up standing next to James Andrews, President ofthe AFL-CIO and Rev. William Barber II as we sang Solidarity Together.

Somehow I ended up standing next to James Andrews, President ofthe AFL-CIO and Rev. William Barber II as we sang Solidarity Together.

Attending Moral Mondays in Raleigh this past Monday on June 24 was an incredible experience.  I’m pretty sure my husband, Michael Galovic got tired of me agonizing for days about whether to do civil disobedience.  I even called several folks I knew who had done it in previous weeks – The singer, activist David LaMotte, my friends Greg Yost and TJ Amos were among them. I don’t do well in situations where I have to “think on my feet” because my brain processes information slowly now so it takes me a while to make a decision.  For this reason, I always try to figure out things beforehand.  It is pretty impossible to plan how an action is going to go so I knew it would be difficult for me.  My friend, LisaRose Barnes, was wonderful though. She drove us the four hours there and then stayed with me much of the time to help me navigate the huge crowds and loud noises.

In order to do it, I brought my ear plugs so I could “rest my brain” when necessary.  I wore them for the entire rally outside in front of the building beforehand.  Below is a picture of me sitting on a ledge with my ear plugs in, “resting my brain.”  I’ve stopped feeling silly when I do this in public now.  I figure if anyone wants to ask me why I do this, I’ll tell them.

I'm "resting my brain."I really do have a problem with overstimulation though. I understand that many brain injury survivors do but it seems like I have more problems with it then others I know.  Admittedly, this event was crazy for anyone but at times it was unbearable for me. During the rally inside, I had put my ear plugs in my pocket and since my hands were cuffed at the jail, I couldn’t get to them.

As luck would have it, when we were waiting to be processed, I was seated next to a woman who has done many actions so she knew how to sing during them.  She led us in song, after song, after song, after song.  So much for “resting my brain!”

Look at the crowd behind me in the picture above!  It was unbelievable.  Rev. William Barber II is an incredible preacher.  I plan to write another post which includes links to two of those videos but I think it’s time for me to stop writing just now.

Tamara after getting out of jail.The picture on the right is of me right after getting out of jail.  It was almost ten o’clock which actually wasn’t too bad.  My brain function seems to be getting better and better as time goes on so perhaps in five years I’ll be able to spend the entire night in jail.

This experience reminded me of when I visited Terry Mincey on death row in Jackson, Georgia.  Prisons and jails are horrible, demeaning places.  It’s no wonder folks are released with broken souls.

Raleigh

Moral Monday Tee-shirtI’ve changed my mind about being arrested in Raleigh this Monday.  I’ve decided to do it.  I understand it will be a stretch but I can’t seem to get the idea out of my head.  Am I hearing God’s voice or am I hearing my own?  I don’t know.

I’ve talked to several folks who have been through the process to get some idea of what I’m getting myself into though.  One person I know even wrote me a long email about ways I could make this work.  As much as I wish God would simply take away my brain injury challenges, I know God can’t do that.  While some folks may disagree with me on this, I don’t believe God takes away our struggles but rather gives us ways to go through them.

Am I making a mistake?  Perhaps. However, I’ve made plans to simply step out of the line when the protesters enter the capital if I think it will be too much stimulation for me.  I can even leave the capital building itself if my compensatory stradegies don’t work.  A friend reminded me, if I decide to not do this, it doesn’t mean I’m a failure.  It just means I’m not able to do this now but I can support the issue in other ways.

It may be a while until I write my next post since I need to recuperate from this to do so.  Here is a wonderful report written by Willie James Jennings who teaches at Duke Divinity School about his experience with this. In it he writes, “The modern lie of individualism is most powerful when we imagine that boldness comes from within.  It does not.  I comes from without, from the Spirit of God”  I feel God’s Spirit within me now especially through the many people who have listened to my fears and given me their wisdom. http://www.religiondispatches.org/archive/politics/7146/becoming_the_common__why_i_got_arrested_in_north_carolina_this_week___politics___/I’ve

Vocabulary Lessons

Feb 17
Mark Ramsey and Kristy Farber are doing a sermon series on the Psalms this Lent. Perhaps it’s where I am in my life now but I can really relate to the sermons. On Feb. 17, Mark preached about Psalm 137. I’ve always hated this Psalm especially verse 9 which reads “Happy shall they be who take your little ones and dash them against the rock!”

In the sermon, Mark suggested that “we need help with our faith language. And into this pressing need, the Bible offers us …the Psalms.” I think at times, we don’t know anything about a faith language – I know I don’t. For example, lately I’ve been really angry. I’m sick of dealing with this TBI and all of its effects. I’m tired of becoming overstimulated during a conversation and having to leave the room to “rest-my-brain.” I’m sick of having to plan for everything since I don’t “think well on my feet.”

I don’t know what took me so long to discover that one way I can deal with my fury, is to swim sprints. When I swim laps as fast as I can, pounding the water as I go, I think about everything I’m mad about. It’s like having a temper tantrum in the pool. I love it because I always feel so much better afterwards. Now I have to figure out how to put a pool in our basement so I can swim sprints anytime! This is truly my faith language.

The Psalmist wrote about throwing “little ones” against a rock which was a temper tantrum of sorts as well. How do we express our anger? I know folks who express it in unhealthy ways that hurt themselves and others. An activist I know expresses it by demonstrating against the injustices in our world. Musicians and other artists use their art for this purpose. I used to fiercely play my violin which helped immensely. Now I’ve discovered I can also do this as I sing.

As Mark suggests, we can hear God’s voice of hope and promise only if we express ourselves fully. This is what I’m trying to do but it is hard. Too often, we’re required – or we think we are required- to “pretend” as we live in our world. We hide our true feelings because we’re afraid of what folks might think.

I love the way this Psalm begins: “By the rivers of Babylon- there we sat down and there we wept when we remembered Zion.” It is important for us to weep sometimes. Only then will we be free.