Fifteen Years

On August 26, 1996, I sustained my traumatic brain injury in a car accident. Water and rainbows had always been healing to me but throughout these years on my journey, they've been a real comfort. When I was first injured, we lived in an apartment in Atlanta. I couldn't drive yet but I would often take my little dog, Abu, for a walk to a stream by my apartment to "get away from it all." Abu played in the water while I sat and relaxed, deep in thought. For me water and rainbows are signs of hope.

Fifteen years ago, Michael and I drove a couple of miles from our apartment to get some frozen yogurt. Michael made a left hand turn onto our street but forgot he was using a standard transmission so he miscalculated. We were hit and both of us were injured, he less so than I. We were taken to two different hospitals where I was put into an induced coma to prevent brain swelling. I don't even remember the first hospital since after a couple of weeks, I was transferred to another facility which had rehab for brain trauma survivors.

In the beginning, I had planned to go back to full time pastoral ministry. I pronounced endless lists of words until I could learn to speak clearly. I did activities to help my cognitive functions. I even began volunteering at a retirement facility as a chaplain until I was ready to work as a full-time minister again. Slowly but surely, I became aware that I would not be able to work as a full time minister again.

Awareness is part of all survivors' journeys. Rep. Giffords is on this journey now and it is not an easy one at all. It's especially difficult because one never knows how much brain function will return. In the beginning, I improved by leaps and bounds and it looked like I'd be able to work again. I began leading devotionals at the center, attending numerous meetings and writing short pieces. The problem was, sometimes my body would completely break down and I'd spend a few days in bed sleeping. I always returned to the same work load which meant more times of rest. Many folks in the brain injury field cautioned me about doing too much but I didn't understand what they meant.

It became a never ending cycle. I would get depressed when I needed to rest but yet I refused to cut back. It wasn't until we moved to Asheville, NC in 2004 when I dropped out of everything. I didn't have any church meetings, no volunteer commitments and no preaching or writing commitments. I spent all my time getting used to a new environment which was enough challenge in itself. After battling my insurance company who thought I could be working, I settled into a calm existence.

Yet I became bored. I needed some challenge, some sort of goal or I would go crazy! Harold Kushner, the author of When Bad Things Happen to Good People helped me here. Genesis says, "In the beginning God created the heaven and the earth. The earth was formless and chaotic, with darkness covering everything." Kushner continues, "Then God began to work His creative magic on the chaos, sorting things out, imposing order where there had been randomness before. He separated the light from the darkness, the earth from the sky, the dry land from the sea. This is what it means to create: not to make something out of nothing, but to make order out of chaos." (I added the bold.)

So a little at a time, God is helping me make order out of the chaos of brain injury. I can do a lot but I must be careful about what and how I do it. I can preach, write and do other things but I can't do them all together as I could before. I'm learning to make choices. I still want to take on too many things so this is a process for me but every year, I get better at it. I'll never have it completely worked out but that's okay. One of my favorite passages of scripture is Isaiah 43:19 "I am about to do a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert." God creates order out of chaos which means there is a road through this wilderness of life.

If you are a brain injury survivor, do you see order in your chaos? Or are you in the midst of chaos and wonder how you're going to survive? Many of us who are survivors have been there so please know you are not alone. See above right for commenting instructions. Due to a glitch I'm not able to comment here but I read every one. Hopefully, this will be fixed soon. If you'd rather contact me directly write puffer61@gmail.com

"Trial and Error"

It's already starting. Arizona state senator Frank Antenori is pushing Rep. Gabrielle Gillords to say if she is planning to run for reelection. (see article in Huffington Post http://www.huffingtonpost.com/2011/08/19/gabrielle-giffords-reelection-frank-antenori_n_931155.html) Of course she isn't required to file until May 15 but politics can be ugly business. Huffinton Post wrote, "Speculation on Giffords' future has buzzed since her surprise return to Congress to cast her first vote since the Jan. 8 shooting... Her return to vote on the debt ceiling deal was celebrated as proof she could possibly return full time to politics."

I don't know if she's going to be able to return full time to politics again or not. She probably doesn't know and neither do her doctors. I remember when I was injured in 1996, I assumed I would be able to return to full-time ministry. Every day brought more improvements and I was hopeful. I remember walking around a pond with my physical therapist trying to get used to an uneven pavement. I remember speaking various words over and over again, trying to speak as clearly as possible. I remember painting ceramic objects which helped me learn to use my hands again. I remember playing hang-man and other word games as my word finding skills improved.

It was, and is, a long process. When I was first injured, I was told it takes two years for most improvements to be made. I remember hanging on to that rule. Two years stretched into three, five and then ten years. Yes, many of my huge improvements happened during those first few years, but I will always continue to improve. It wasn't until a few years after my injury when I realized (awareness) I would never be a full time minister again. However, I still can do some pastor like activities. I must be selective and it's a "trial and error" sort of thing to learn what those activities are.

This brings me back to Gabrielle Giffords. She's having to go through this awareness process in the public eye - in the crazy circus of politics. I can only imagine how difficult this is. This was hard enough without having to have my every move commented about in the newspaper. I am grateful for my husband's advocacy for I wasn't able to do it for myself.

I have my doubts about her ability to return but that is neither here nor there. She needs to come to this awareness herself. Another important factor is, every brain injury is different and I try not judge another survivor's choices. Traumatic Brain Injury doesn't fit into nice categories and it really is a "trial and error" sort of thing.

If you are a survivor, what's sort of things have you had to try? Did they work? See above right for commenting instructions but note that at this time I cannot comment myself due to a technical glitch. Know that I read every one. If you'd like to contact me directly, write puffer61@gmail.com

A Long Way Back

In today's Asheville Citizen Times, there was an article on the front page about Jordan Allen who sustained a TBI two years ago. http://www.citizen-times.com/article/20110814/NEWS/308140041/Asheville-High-student-continues-recover-two-years-after-accident . The picture above is of Jordan and his mother, Tracee Workman. Workman is quoted as saying "Jordan was supposed to go to a step-down facility after CarePartners....But Workman says Jordan fell in a gray area - between someone with mental illness and someone with development problems. She says Jordan's insurance company, CoreSource, didn't want to pay because it wasn't a medical necessity." He still has a long way to go and he needs to more rehab.

I was in a similar situation and my insurance company said the same thing. I remember thinking, "What does that mean? I can't organize my thoughts or remember things but treatment isn't medically necessary?" My husband and I were furious but Michael looked into all options available to me. At the time I qualified for a state program that paid for me to have more rehabilitation at the Shepherd Center in Atlanta. I needed this rehab and I'm glad I qualified.

When I moved here to North Carolina, I was amazed to discover that brain injury falls in the same area as mental illnesses and developmental disabilities in the state system. Since my brain injury occurred when I was an adult, the services were much different for me. There isn't enough services for high school students in this state.

After reading this article, memories of my own injury almost 15 years ago came flooding back. My insurance company did pay for a stepped down facility after leaving the hospital. However, at one point a therapist listed me as "non-compliant." This meant the therapist thought I wasn't following his or her directions. I remember spending time playing games like hangman on a computer program thinking it was a waste of time. I wanted to get back to work, not spend hours playing computer games.

Now I can see how that game probably helped my word-finding skills. People with brain injury often have difficulty thinking of a word. One needs to practice having conversations and playing games like hangman in order to recover some of these skills. I may have been more open to playing the game if someone would have taken the time to explain to me why I was doing it.

On second thought, maybe not. Awareness is a huge issue for brain injury survivors. A person just isn't aware of one's limitations and sometimes will try to do dangerous things. I volunteered at a brain injury facility in Atlanta and was talking to a recently injured man who told me about his visit home. He used to climb trees for his job but he told me he had decided not to climb any when he was home this time, maybe later. This from a man who used a wheelchair some of the time! He still thought he could do it.

I was impressed with Tracee Workman's determination to help her son. A brain injury survivor cannot do it alone. My husband, Michael, really battled insurance companies and medical personnel for me and for this, I am grateful. I plan to try and contact Jordan and Tracee this week. They need all the support they can get.

Against the Wind

This is my second post on two different sermons I heard last week on Matthew 14:22-23 (see "Water Walk on August 8). Mark Ramsey, the Pastor at Grace Covenant Presbyterian, preached this one and like Ken's, I found ways it applied to me as a TBI survivor. Mark said,"But while he was praying, the wind came up and waves began to batter the disciple's boat. Whatever you believe about the rest of this story, surely you can believe this part: the wind was against them."

As a TBI survivor, the wind is against me. It's against me when I get lost all the time. (spatial orientation) It's against me when I have difficulty organizing my thoughts. It's against me when I get overstimulated from the various sounds around me. It's against all of us but we find ways to push against this wind.

I think of an experience that happened at an brain injury support group in Atlanta of which I was a part. The group consisted of survivors and their supporters. On one evening we were talking about a difficult situation occurring in the Georgia Brian Injury Association. Some of us had strong feelings and it got pretty tense. Suddenly, Brian shouted "Stop." Now Brian uses a wheel chair and has great difficulty speaking but everyone quieted down to hear what he had to say. With great difficulty he continued. "We're all on the same side!" After he spoke, no one said a word because everyone knew he was right.

If we are going to push against the wind, we need each other. That's why being around other brain injury survivors is important. We can understand what the other is going through. We started a support group here in Asheville called "Brainstormers" because we needed a place where we could share our struggles together and give each other support. There is another support group here but it has a different focus. Unfortunately, we havn't been able to keep it going but I don't want to give up on it yet. I'm going to try and find someone who can work with me to push against the wind.

Mark also said, "In this story it was not the storm that sank Peter. It was fear and his inability to believe in the sustaining presence and power of God in the midst of the storm" Fear encapsulates a lot of things with worry and distress among them. I worried when I went to the rally downtown on Wednesday. I worried about parking so I took the bus. I used to take public transportation in Atlanta when I couldn't drive. I always wrote my bus numbers and stop times on a little piece of paper because I couldn't remember them. I saved each piece of paper so I could use it again when I needed to take the same trip over which was often.

On Wednesday, I used an umbrella to shield me from the hot sun as I waited for the bus. I shared it with another woman and was remind again how hard it is not to have a car in Asheville. In the process of paying my fare and putting down my umbrella, I lost the little piece of paper which told me how to get to the rally. When I got to the bus station, all I could remember was I needed to get to Pritchard Park. When I arrived there, I discovered it was at Pack square. At least I had the "P" right! So I got directions to Pack Square and arrived only a little late.

All the stimulation of taking the bus, trying to focus on the speakers and standing in the hot sun overloaded me cognitively and I needed to "rest by brain." So the next morning, I swam hard laps. I usually take a high intensity water aerobics class but I didn't need to focus on an instructor or try to listen to her with all the noise from a children's class on the other side of the pool. Swimming laps and praying later, allowed me to "rest my brain" so that I could continue pushing against the wind.

Mark also said, "Faith is not the absence of fear (or worry and distress) but courage to walk through the fear and take the hand that is offered. To be courageous is not to be fearless; it is to be able to act in spite of fear." We need others in order to push against the wind.

With all your challenges, how do you push against the wind? Do you have support networks? I would like for this blog to be a place where brain injury survivors can share their struggles. If you have a comment, see the directions on commenting above right. Due to technical difficulties, I am unable to respond here but I read every one. Hopefully, I'll fix this soon. Feel free to comment directly to me at puffer61@gmail.com

Over-stimulation

It's happened again and I hate it. Prior to my TBI I could do things all the time. Now too much stimulation and I get tired. Even though I know this and am careful to avoid too much activity, sometimes I can't help it. When I say "activity" I mean paying attention to everything. I didn't realize how much one concentrates and pays attention to their environment every day until I became a TBI survivor. Simply driving or walking down the street means one is hit with all sorts of stimuli. We may not know it but lights, sound, speaking and everything else we do causes our brains to work.

For example, my day yesterday was too much for me and I didn't even do that much! Shoot, I used to have meetings, appointments and writing assignment all day and night long. Yesterday I worked in Grace Covenant Presbyterian Church's community garden in the morning. The garden is right in the front yard by a busy street with lots of traffic noise. After that, I delivered some vegetables to someone before driving home. All that in itself was a lot of stimulation.

I then cleaned up, ate lunch and visited someone in the afternoon. I really enjoy visiting folks for my church but when I concentrate on a conversation for a length of time, it wears me out. I then had to pick up my dog from day care. I know! I know! Day care for a dog sounds crazy but I have a dog that thrives on stimulation and he gets it there. But it meant picking him up before going downtown for a rally sponsored by the organization Move-On. I really wanted to go even though I knew it was a lot, so I went.

Even though downtown Asheville is not far, I didn't want to find a parking place and then remember where I parked the car (spatial orientation) so I decided to take the bus. I used to take the bus in Atlanta when I couldn't drive at all and I had tons of little pieces of paper with my bus numbers and times on them. I always had to write everything down including what subway station to take. (memory) It took a long time to get anywhere but it worked. The Asheville Transit isn't as good but taking a bus from my home downtown is pretty easy.

I brought my umbrella to shield me from the sun and I prepared to wait at the stop. A woman joined me and we shared my umbrella. The experience reminded me what I like about the bus. I always meet interesting people and I'm more aware of the difficult lives many people must face. I had a choice to take the bus but some folks don't have the choice at all. I had written my directions down on a little piece of paper but somehow in the commotion with buying my ticket and putting my umbrella down, I lost it. I remembered the first part of my directions from the bus station and began walking.

The problem was I thought I needed to go to Pritchard Park when I really needed to go to Pack Square Park. At least I got the "P" right! I asked directions to Pritchard Park but when I arrived there was no rally there. People gave me directions to go to City Square Park so I headed there. On the way, I found the rally at Pack Square. The picture posted above is one from that rally. Michael met me there at the rally and we drove home together. I was beat for it was a long rally but I'm glad I went. It felt good to be around folks who are as angry as I am about the budget cuts and high unemployment.

I usually take a high intensity water aerobics class on Thursday mornings but I didn't want to have to concentrate on a teacher's directions or worry about colliding into someone. Instead I swam laps. I didn't have to think and I could swim as hard as I liked. It's just what I needed. When I returned home, I realized I had left my swimsuit at the Y. This meant going back for it instead of resting my brain which I really needed to do. When I finally returned home, I put in my ear plugs and rested my brain for a half hour.

I had some other things I wanted to do this afternoon but when I push it this hard, I usually need to take it easy for a while. So I wrote in my journal, meditated and am planning to do things that won't stress me out. It is a challenge to try to be involved in one's community when one has a TBI but I am trying to find ways to do this.

If you are a TBI survivor do you get over-stimulated easily? How do you work with it? Some folks simply cannot do as much as I do and I must admit that sometimes I push it too hard. Every TBI is different and we all have to do what works for us. See top right for commenting instructions or contact me directly at puffer61@gmail.com. I still can't respond to your comment here but I read all of them.

The Water Walk

I attend two different churches. One meets in the morning and the other in the afternoon. I don't always attend both services but I find it interesting when the two preachers both choose the day's lectionary passage as is what happened yesterday. The passage was Matthew 14:22-33. Both sermons spoke to my TBI in an indirect way. I'm going to write one post about how each sermon affected me beginning with Ken Sehested, the preacher at Circle of Mercy.

The passage is a familiar one. Jesus left his disciples on the boat while he went off to pray. A storm came and Jesus walked on the water toward their boat. The disciples were afraid and Peter said, "If it is you, help me walk to you on the water." Peter did but the wind was strong and he became frightened and began to sink. Jesus saved him in that storm. Ken focused his sermon on all the ways we "do the water walk."

He said "the water walk will take us to risky places, maybe even places where we'll get in over our heads........We do not get to where we're going because we've mapped a clear path to the destination of our choosing, however bright and wonderful that destination may be. Our long-range planning conclusions may have to be scrapped. The way forward won't appear until we start walking. We may have to give up on some big dreams in order to stumble on to some truly gigantic ones. Our biggest asset will not be our strength but our nimbleness."

"Nimble" according to Websters means "quick-witted; alert; moving or acting quickly and lightly." Now folks with a brain injury do not act quickly. In fact, we act pretty slowly and carefully. The neurons in our brains have slowed down which means it takes us longer to think about and do things. I think my greatest asset is a willingness to try new things until I find something that works.

After determining that working as a minister at a church wasn't possible, I tried being a volunteer at the Open Door Community in Atlanta. This is a community that works with homeless folks and folks in prison. They have a soup kitchen, offer showers and clothes, provide a public bathroom, phone and have worship and reflection times through out the week. My vocational therapist went with me there to help me figure out how to do my tasks. Although I support their ministry it just didn't work for me since it was too chaotic of an environment.

I then volunteered at a hospice but the patients there slept all day so that didn't work. I finally walked into the chaplain's office at a local retirement community to see if they needed a volunteer chaplain there. This was definitely a "water walk." I met the head of the chaplain's office who was always busy and I don't know how I managed to catch him at that time. As a result, I spent several years volunteering there. I was able to help with pastoral visits, chapel services and other functions. I had some supervision from the director and I also took a clinical pastoral education program there.

This "water walk" is not the walk I wanted. I've scrapped the destination I chose and now I am in a risky place. Ken said yesterday, "Our future is more likely to spring up in our midst, to surprise us, maybe even shock us, possibly even threaten us. The water walk means we need to be ready to expect the unexpected. " While TBI survivors don't do well with unexpected situations, I am on this walk now waiting for what God has is in store for me.

Children

I married late in life but I never had a burning desire to have children. I always assumed I would have them but I wasn't in any hurry. I loved being around other people's children and I especially liked doing the children's time at church. I remember when I first started doing it, I worried about it which I seem to do about everything that I do for the first time.

My TBI happened three months after my marriage. I was in an induced coma in one hospital while Michael was in another. The other Associate Pastor of the church I served put a notebook in the waiting room for people to sign when they came to visit. I wasn't allowed any visits and this was a way for folks to respond to my accident. I treasure this notebook today and I appreciate seeing the notes from the many people who visited. I must say, I am surprised at the various folks who came to the hospital. Perhaps I'll write a post about that time but today I want to write a little about children.

I can't imagine having children when I was injured. I was sensitive to noise (I still am but it is much better) and the thought of having children playing in the house when I was trying to recover, is unbearable to me. Many brain injury survivors have children and I can't imagine the challenges. I never even thought about adding children to the mix.

I think often folks have a desire to leave part of themselves behind when they die. Having children is one way to do this. I do feel a sense of loss at not having children but I'll have to leave a sense of myself behind in other ways. I do believe that too often, folks use children to give them a sense of self and I imagine this is a challenge for people who do have children.

At Grace Covenant years ago, I volunteered to help in one of the children's classes for two weeks. It wasn't any more chaotic than any other children's' class but I just couldn't take the stimulation. At Circle of Mercy, the children leave worship to play during the sermon. Volunteers help the paid sitter then and I might try it once to see if I can do it. It would be a way to be around a small group of children which may be okay for me. It's another example of trying something to see if it works since having a TBI requires flexibility.

How are you around children after having a TBI? Do you have any children? Feel free to comment here (commenting instructions are above right) but feel free t0 comment directly to me at puffer61@gmail.com I'm unable to respond to your comment here due to technical difficulties but I read every one.

Internet

I wish it didn't take so little for me to get overwhelmed and stressed. My life now must consist of well made plans and sometimes, it drives me a little nuts. If someone throws me a curve ball, I don't do well. People with TBI need consistency and a steady schedule. The problem is, I've never had a steady schedule. After college, I worked as a freelance violinist/violist and I played all sorts of places: churches, concert halls and every thing in between. I even played violin with an accordionist in a group called "Bellows and Bows." One of our "gigs" was at a Hyatt Regency where we played for breakfast and for lunch.

After a while, I realized I probably would have difficulty becoming a member of a professional orchestra which had been my dream. I started seminary at an American Baptist seminary n Kansas City because I wasn't ready to cut my music ties yet. For a couple of years I did both which made for a crazy schedule and late nights trying to learn my biblical Greek. I then transferred to Columbia seminary in Atlanta, GA where I finished and worked as an Associate Pastor in Atlanta.

So I find too consistent a schedule boring! Lately there's been a couple of unexpected things thrown my way and they've stressed me out. I have Charter for Internet and I couldn't get a signal so I called them this morning. Unfortunately I have found Charter's customer service to be awful. However, it's the only company that serves my street so if I want service I have to use them. I had a local provider who was very patient with me when I called for help but for some reason, we no longer can get the signal. I do support local business when I can.

I hate talking to Charter. Plus I'm pretty ignorant about Internet things. We have all these wires and plugs coming out of the computer and I don't know what is what. Router? Modem? Grrrr. Anyway, I realized I didn't know what the guy was talking about so I called Michael to help me. Michael is very patient but he does get frustrated with me because he really is a computer whiz. He tried to explain to me there the router cord was and I wasn't understanding. Finally, he said, "Just figure it out!"

Well that got me mad. "You know I can't figure it out with this dam TBI!" and on and on I went. He listened and realized that once I get to that point, it's too late. I can't be reasoned with. I don't remember how our argument ended but I did know where the correct wires were so I called Charter back. It's fixed now but I do feel bad about the whole event. Michael has a lot going on at work and having to stop and deal with me had to have been maddening.

So what have I learned about my tendency to get stressed and overwhelmed from this? I have got to stop myself before this happens. Perhaps I could have taken some deep breaths and meditated some before calling Michael and Charter. I probably should have spent time journaling which always helps me. In fact, I think I'll spend some time journaling now especially since I have a potentially stressful meeting tonight.

How do you handle your overwhelmed feelings? For me, journaling helps but this isn't for everyone. See above right for directions on how to comment. (Know that I'm having difficulty commenting myself but I do read every one.) Or if you'd rather, contact me directly at puffer61@gmail.com