Communion

A couple of weeks ago, I led communion for Circle of Mercy congregation. I always like to do some sort of call to the table that refers to the sermon that was preached. This is easier when I preach the sermon but harder when I don’t. Since I don’t think on my feet, I always have to plan whatever I say in advance.

On this Sunday, Marc Mullinax was preaching and he described in advance what he was going to try to do in his sermon. Since I’m somewhat of a perfectionist I often spend way too much time on anything I say trying to get it just right. What I realize now is my perfectionism was (and is) a way I live out all my insecurities. I can no longer spend hours and hours on anything since I am able to focus less now. An hour max is all I can do before I have to “rest my brain” a bit.

So when Marc asked me to lead communion, I realized I couldn’t spend a lot of time on it. I knew it would stress me out because speaking in public always does. However, I like doing it and I do believe I have a gift for it so I try and deal with the challenges involved. I set aside a short period of time and something came to my mind.I wrote it on a little 3x5 card because, though only a few sentences, I knew I wouldn’t remember them when the time came. I prayed that God would use my words and then I put my 3x5 card away.

God worked through my weaknesses and communion was meaningful. Yes, I was nervous. Yes, I worried about having difficulty reading my card. Yes, I was afraid I’d forget the words of institution. But what did I learn from this? First, I must set limits and stick to them. Second, I must trust the Spirit to work through me. God does give what is necessary to accomplish what we are called to do. Sometimes I forget this and think I have to do it all. God doesn’t call any of us to push and push until we collapse. God provides what we need, perhaps through other people or other events. We don’t have to do it all and it’s selfish for us to think otherwise.

What things have you learned from your weaknesses (a brain injury or anything else)?When is it difficult to trust God? Feel free to comment by checking the anonymous box or contact me directly tamara@indylink.org

A Disease?

The Brain Injury Association of America (BIAA) is a wonderful organization working to help folks become aware of the 1.6 million traumatic brain injuries that occur every year. I've been involved with the statewide organizations in both Georgia and North Carolina. There web site is http://biausa.org and I encourage you to check it out . Although I agree with most of their actions, I strongly oppose their current push to view brain injury as a disease. You can find a position paper on the site called "Conceptualizing Brain Injury as a Chronic Disease." I understand that classifying it as a disease may allow brain injury survivors to tap more funding sources but this is not the way to go. I don't have a disease.

Due to my TBI, I get frequent migraines. In the beginning I tried numerous preventives but they either didn't work or made me sleepy. I also tried dozens of medicines that helped stop the headache after it occurred. This went on for several years. I'd spend the day in a darkened room laying in bed not able to function. After several years of trying various meds, I found a neurologist who tried an unconventional combination that worked. The preventive made me sleepy but after trying several different ways of taking it, I discovered I could take the bulk of it at night when I had to sleep anyway.

This past year, I discovered the preventive meds were doing things to my body that I didn't like. One med raised my heart rate and the other caused sleepiness. So after over ten years of taking this combination of meds, I'm trying to cut them out by using acupuncture. After stopping one med, my heart rate is down to normal but I'm still working on cutting out the other one. I'm doing this under a doctor's care just to be sure since the meds are pretty powerful. As a result, I don't have to take my noon day nap which I've taken for over ten years! I still have cognitive overload and overstimulation issues but it's nice not having to take my nap every day.

In the paper mentioned above the authors wrote, "Historically, individuals living with a brain injury have been referred to as brain injury survivors. No one knows how that term came to be used in this situation." Maybe no one knows how this term came to be used but I am definitely a survivor. Every day, I have to figure out how to live when I get overwhelmed with the stimulation around me. Every day, I must figure out how to get somewhere when I have no sense of direction. Every day, I struggle with double vision caused from the accident. Every single day, I must survive these challenges. I, along with the millions of others who have sustained a brain injury, must live in a world that is not made for us. We are survivors and I challenge anyone who does not have a brain injury to say this is not so!

I mentioned before that I'm using The Daily Reader for Contemplative Living compiled by S. Stephanie Iachetta each day. Today she suggests reflecting on a passage in Mark which begins..."the reign of God is near." (She uses "kingdom" but I prefer "reign of God.") I worked on this post earlier today and became very angry when I wrote about the ideas suggested by BIAA. I went to the Y to swim my laps with the hope I would get some of this anger out. I've been trying to think about the reflection passage every day but I sometimes have trouble remembering it. I write it on a little piece of paper and put it in my pocket so I may read it throughout the day. There isn't a pocket in my bathing suit so I tried to remember it rhythmically as I swam. I got "the reign of God" part right but all I could think of next was, "is here." I thought to myself, "That can't be right! The reign of God isn't here. Oh well." It fit pretty well with my rhythm so I said "the reign of God is here" as I swam across the pool.

Something happened to me internally even though I knew what I was saying wasn't right. "The reign of God is here" means there are no brain injury survivors. "The reign of God is here" means I'll never get lost again. "The reign of God is here" means I have no double vision. As I swam across the pool, I was filled with hope for the future. I left the Y with a renewed faith in God. Then I checked my slip of paper in my pocket and realized the passage was "The reign of God is near." I still have double vision and I still get overstimulated when I go into a room. But now I feel a renewed sense of God's courage, energy and comfort.

I'm very concerned about BIAA's stance. Our world is so prescription oriented. I'm fearful that BIAA is trying to get money from drug companies by calling brain injury a disease. Acupuncture has allowed me to cut back on my meds and now the side effects of my meds are disappearing. (Of course, my health insurance doesn't pay for this. Instead, they'll pay for the doctor's visits and the meds.) I encourage BIAA to continue it's advocacy but I believe this current path is a dangerous one. I believe there are other ways to bring the reign of God closer. I pray this will be so.

I encourage you to comment if you see fit. Click on the comments button and place to type your comment will appear. Following that it will ask you to select how you want to post, choose anonymous. Click yes when it asks you to preview. After that you can post it. If you'd rather respond to me directly contact tamara@indylink.org I'm working on making this easier!

About Comments

Two people told me they tried to comment on one of my posts but it was too confusing so they didn't bother. And it is confusing! I just responded to a comment and had to figure out how to do it. I plan to ask my blogging teachers how I can set this up so it's easier to comment. I'll also check the "help" index but both of these may take me a while. In the meantime, if you want to try commenting follow the directions below. I'll try to print them on each post until I learn how to make the process easier. If you know how I might make commenting easier, feel free to send me a quick email at tamara@indylink.org. Or comment on this post!

Click on the word "comments" at the bottom of the post. An area to type your message will come up. After commenting, click on "post comment." Then it asks how you want to post your comment. I clicked on "google" and it posted. Now perhaps one must have a google account in order to post. I don't know. Or just email me directly. With help, I'll figure this out eventually!

Memory

I really don't know why this happens but I remember things at night. I can't count the number of times I wake up in the morning with a thought about something I'm doing. Sometimes I even wake up in the middle of the night and have to get up and make a note or I'll forget it. It happened last night. As I took my shower this morning to get ready to go to church, I remembered something I could have done yesterday to avoid driving the wrong way to the Blue Ridge Polymer Clay Guild meeting. And it's such a simple thing! In fact, many of the compensatory strategies are simple if I'd only remember and do them!

I was running a little late yesterday so I dashed into the car and went on my way. I didn't think about the directions to where I was going. I used to jump in my car and go where I needed to go all the time. The problem is my brain works differently now. The directions were in my brain but I needed to take a minute or two to get them out. I would have taken the correct highway if I had spent two minutes doing this. Instead, I ran out the door and drove the wrong way. Folks do this all the time. Usually they realize it and then make the necessary corrections.

For me it isn't this easy. It threw my whole system off. Cognitive overload took over and I became "spacey" and couldn't make the necessary correction. I had to return to where I started and once I did this, I knew exactly where I was going. Well maybe not exactly where I was going, since I had to check for landmarks along the way to be certain I was going the right way. It all could have been avoided if I had taken the two minutes necessary to get the directions out of my brain. Or if I had taken the written directions with me.

This process has helped me realize something about this blog. Writing about my experiences is forcing me to reflect upon them. I hope I'll remember now to take a few minutes before I do something to think about it. For example, I have to lead communion tonight at church. (Circle of Mercy, my night church.) I spent a few minutes yesterday trying to think of something to say that would flow from the rest of the service. Now I need to take a few minutes and make sure my notes are together.

Plus, I need to spend time asking for God's Spirit to speak through my words and my being. Many folks at the Circle can lead communion without notes but since my brain works differently now, I cannot do this. I have to plan ahead and rely on God's energy to work through me. And God always does.

I'm in Holland now not in Italy. As I wrote in an earlier post, "if I spend hours brooding and mulling over my losses, I'll never get to enjoy the extraordinary things that are here in Holland . And Holland has some extraordinary things."

Spaciness

I've always had a reputation for getting lost. Oh I managed to get to where I was supposed to be for people depended on me. After all, when I was in my twenties I worked as a freelance violinist/violist in Kansas City. I played at wedding receptions, churches, restaurants, and other places all over the city and I was paid to play and be on time. I knew how to focus because I had to in order to perform even if I had driven all over the city to get there.

I'm reminded of this now especially since I have no spacial orientation. This means I have no sense of direction which is a direct result of my TBI. Being lost isn't new to me but this "spaciness" is. I don't know exactly how to describe it. This afternoon I went to the Blue Ridge Polymer Clay Guild of which I'm a member. We meet once a month to share ideas and tips on making various things out of polymer clay. The guild is full of very gifted folks who make incredible pieces. There are also folks like me who simply work in clay because it's fun.

I keep a notebook with the directions to every place I go. Whenever I go somewhere, I pull out the directions and follow them. I've attended the guild for the past five or six years with the last five driving there from my current home. I haven't attended since October because I had hand surgery. Even though I'm still not ready to use my hand, I wanted to attend today because it was a special day with many gifted artists attending and I wanted to be among them. Although I don't consider myself a polymer clay artist - just someone who messes around with clay - I become energized when I'm around such creative energy.

I didn't take my directions because I figured I knew where I was going. This was a mistake. I took the wrong highway going the wrong direction! I ended up driving several miles the wrong way before I could turn around. When I did turn around, I felt really spacey. I still wasn't sure I was going the right way. I'm a safe driver when I'm "spacey" but if someone tries to talk to me then, I may seem drunk. I know folks who are brain injury survivors who've been walking down the road and have been stopped by the police because it appeared they were drunk. In fact they make necklaces with a label saying the wearer has a brain injury and may seem unfocused because of it.

When I managed to find the right road and realized I was heading the correct way, I took a few deep breaths to center myself. When I get "spacey" I focus on my breathing which helps me become more present in my body. I often take a few minutes before I do something to center myself. It seems I'm having to do this a lot lately but it really helps.

Do you have spatial orientation issues? This could be apparent in other ways besides driving. I always lose my way in a new building (I don't go to large malls or even small ones for this reason) and it usually takes me many visits to a new place before I can find my way around. Feel free to comment here by clicking on "comment" or email me directly at tamara@indylink.org

Welcome to Holland

I was organizing my files on brain injury when I came across a poem I had clipped from the newspaper years ago. I share it at the risk of taking it out of context but Emily Perl Kingsley's poem called Welcome to Holland resonated with me.

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It's like this...When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo's "David." The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes and says, "Welcome to Holland." Holland?" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."

I know folks who've said, "I'm glad God allowed this brain injury to happen to me. I'm a much better person now." I respectfully disagree. God doesn't allow things to happen so we can learn something. It's the other way around. God uses what happens so we may become closer to God and to the people around us. Besides, I wanted to go to Italy! I had studied and trained to go to Italy and the pain of being here in Holland is not ever going away.

But here I am in Holland. I've met some remarkable people that I would never have met in Italy. I've had experiences that could only happen here. Every now and then I meet someone who has been to Italy and I grieve again. But if I spend hours brooding and mulling over my losses, I'll never get to enjoy the extraordinary things that are here in Holland. And Holland has some very extraordinary things.

How is your life different now after your brain injury? What do you miss? Is there anything extraordinary now that wasn't part of your life before? As always, all comments are appreciated or contact me directly at tamara@indylink.org

Rep. Gabrielle Giffords

I read in today's paper the following: "Space shuttle commander Mark Kelly wouldn't go into details about her condition during a news conference Friday and deflected questions about how he knows she supports his choice to fly." His wife, Gabrielle Giffords, sustained a gunshot wound to her head at a "meet in greet" in Arizona on January 8. He had been training for a scheduled mission in April. He took leave to be with her during this first month and there has been much speculation about whether he will fly. He has made his decision and I support him completely.

A month after my accident, I spent hours learning how to walk, eat and speak again. I remember working with a speech therapist where I learned how to put words together. Actually, first I had to recite lists of words separately before learning how to put them together! When my husband visited me at night, he patiently tried to understand what I was saying. Often, I just slept because it took so much energy to get the neurons working in my brain. Of course, she isn't able to say she wants him to go! They've spent months if not years, talking about his missions so she knows how hard he has worked to reach this point! There isn't anything he can do now that she is in rehab. She is in the care of professionals. The press doesn't know what she needs and it makes me angry they would insinuate otherwise! His superiors would not allow him to fly if they thought there was any chance he could not focus on his mission.

We need to continue praying for Giffords and Kelly in these days ahead. They have a very difficult journey. I remember how hard it was for us. I say "us" because a brain injury doesn't just change the person injured but rather all those in touch with that person, especially family members. I'll write more about how family members are affected later. I might even ask my husband to write a guest post since I only know about his struggles through him telling me about them!

I have been involved in many discussions about Rep. Giffords just as I've had discussions about other "famous people" in the news who have begun this journey. And it is a journey. Even now as I write this, my emotions are running away with me because I know more about this journey then I ever wanted to know.

As always your comments are appreciated. Where are you in this journey? What has the journey been like if you're a supporter? What are some of your thoughts about Giffords and Kelly? If you would like to comment here simply click on the comment button. You may contact me directly at tamara@indylink.org

Cognitive Overload

People who have a brain injury experience what is called cognitive overload. Some of the neurons in our brain died when we sustained our injury so now those remaining must handle much more than before. Our brain controls everything. For example, when I drive I must keep track of the other cars, traffic lights, signs, and everything else. I drove to a physical therapy appointment this morning in the light rain, the sun blocked by heavy clouds. As a result I had to be more attentive to my surrounding.

This ability to pay attention is another thing difficult for survivors. I become more tired when I have to focus on something. So my ten-minute drive (some on the highway which means I must process information quickly) followed by a short appointment, and then my ten-minute drive home, wore me out. I then spent a few minutes in contemplative prayer.

I find that getting in touch with God is important to managing my brain injury. I feel much more relaxed when I can pour out my concerns and I’m in touch with God’s healing presence. This is important for all of us but it is crucial for me in order to function. Since I am no longer able to push myself without breaking down completely, I’ve become much more aware of how those around me stay too busy. Some of this is unavoidable but sometimes we need to cut down on our responsibilities for our own well being. I don’t believe God calls any of us to spend our lives tense.

Now, back to cognitive overload. Since I cannot handle as much as before, it is also important for me to simply “rest my brain” by doing something mindless. I receive the Sunday New York Times, which I save to read throughout the week. I still have a few “mindless” stories (style etc.) left to read which allows me to “rest my brain.” All survivors must find their own ways to rest, which may be different from what works for me.

How do you handle cognitive overload? Have you found ways to “rest your brain?” Is it difficult for you to pay attention? Feel free to comment or email me directly at tamara@indylink.org.

Blog Purpose

A friend emailed me today and asked if my blog was interactive. I replied immediately and said "yes." Several weeks ago my husband suggested I start a blog where survivors may share our experiences. I knew nothing about creating one and doubted I could do it but as I thought more about it, I thought "Why not? If it's too difficult for me, I'll stop and try something else."

One thing I have learned about being a brain injury survivor is I have to try different things and if they don't work, try something else. In the late nineties, I tried volunteering at a Christian community in Atlanta that served folks who are homeless and in prison. It was a chaotic place and although I very much affirmed their peace and justice activities, it was not a good environment for someone with a brain injury. So I then volunteered as a chaplain at a local hospice. That didn't work since many of the patients were in the last stages of the dying process and were not too be present.

I was getting frustrated about finding a place where I could use my gifts and I thought perhaps I couldn't do any type of ministry. Finally, I decided to visit the chaplain's office at a local retirement community to see if I could volunteer there. God was guiding me at that time because the Director of Pastoral Care after having met me said, "Sure, we could use some help." He even had time to give me a tour of the site which contained several different levels of nursing care as well as assisted living. This amazes me now because the office was extremely busy and it was rare for him to have that much time to give me.

It was the perfect place for me at that time. There was a chaplaincy intern program there and I became their first volunteer intern. I learned much about providing ministry to older people. I also learned some about how to manage my own disability which has served me well. My husband then took a job in the Asheville, NC area and we relocated.

Moving is difficult for anyone but a change in environment is very difficult for brain injury survivors. We need consistency and repetition in order to function. I had to change churches, neighborhoods and all that entails. At least Asheville is a small city and I'm able to drive on the highway here, something I could never do in Atlanta.

I write all this with the hope that you will comment about any of your struggles. Feel free to write about things for which you are thankful or any other ideas that come from my post. If you've never commented on a blog before, it's easy. (I only learned how a few months ago!) At the bottom of this note is the word "comments." Click on that button and a place to comment will appear. Type anything you want to say and then click on "post a comment." Your post will appear in the comments section after my own comments. If you'd prefer to comment without having it appear, send an email to me at tamara@indylink.org . I'd love to hear from you either way.