Pain and Promise

On August 22, 2012 I wrote a blog post called “All or Nothing.”  In it I mentioned Kathleen O’Connor’s book Jeremiah: Pain and Promise. I had only read three chapters of it at the time but this morning I read chapter 9 “Encoding Catastrophe” about the sermons in Jeremiah.  Pictured at left is O’Connor’s book along with a book by Gerhard von Rad, The Message of the Prophets.

As I wrote earlier, I never liked Jeremiah but O’Connor’s book is giving me a new appreciation for it.  I consulted von Rad’s book because I get sort of confused about all the historical things in Jeremiah.  I hope to study it more carefully later but for now this chapter really affected me.

O’Connor writes, “Because disasters shatter ‘the sense of what life deeply means,’ and because they destroy the symbolic universe that formerly held up the world, new ways of conceiving identity must emerge for a people to survive as a people. (p. 93, bold added) While it is true that sustaining a traumatic brain injury is not the same as the disaster Jeremiah writes about, there are similarities. 

O’Connor shares what trauma experts Robin Fivush and Beth Seelig wrote.  “When experienced events cannot be understood, the human mind returns again and again to the event to try to make sense of it in a repetitive and compulsive way.”  This definitely happens when one sustains a brain injury.  We want to tell our story over and over again in order to make sense of it. O’Connor says that part of the narrative changes in the retelling, “But the more coherent and better organized explanations become, the more they aid survivors.”

This is true in my case.  How many times have I told my story?  My husband Michael and I went out for frozen yogurt and when we were returning home he forgot what gear he was in on our standard transmisiion when he turned left.  As a result, we were hit by an oncoming car.  The police officer even gave him a ticket as I was being taken by ambulance to the nearest hospital and he was experiencing all the confusion one experiences after being in a serious accident.  (He spent a week in the hospital.  I was in an induced coma so I didn’t know anything that was going on.)

I’ve gone over it in my mind millions of times.  How could Michael be so stupid as to not know what gear he was in?  Why did we get frozen yogurt just then?  and Etc. Etc. Etc. However, going over it again in my mind has “turned frightening chaos into a contained and predictable event.”  (Tal, Worlds of Hurt) Like Jeremiah’s sermons, my “sermons” (to myself and to others) have allowed me to accept this tragedy and move on.

This is why brain injury survivors must connect and tell their stories to one another. I’ve shared my anger at Michael for causing the accident and he has shared his regret.  In fact, he won’t buy a standard transmission car now!  While I’m not thankful for the accident, I have learned much from it. In fact, both of us have grown. 

At some point, I plan to study Jeremiah.  O’Connor wrote in her preface, “Viewed from this perspective, Jeremiah is a work of resilience, a book of massive theological reinvention, and a kind of survival manual for a destroyed society.”   Those of us who are brain injury surivors need a “survival manual.”

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.

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.

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

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.