Publishing Woes

brainAn experience happened to me this week that reminded me of the challenges of having a brain injury. I read an article run in the New York Times years ago this week. I shared it on Facebook with the following doctor’s quote lifted out. “People hold on to hope that just as when they survived the crash and they had this miraculous recovery, that they will overcome these challenges that other people may not in this miraculous way.  That’s not going to happen.”

For me it isn’t so much overcoming my challenges. It’s that I remember what I was able to do before so easily and it’s not easy now. As a result, I often say I’m going to do something without remembering how stressful it is for me to get it done. I might be able to accomplish the task but it means dropping everything else in my life.  After twenty years, I’m realizing few things are pressing enough for me to make this sacrifice.

For example my book memoir with some theological reflection is ready for the publishing stage. I could not have accomplished this without Joyce Hollyday’s help.  Yes I wrote much of it but Joyce added to it and edited it in a way that makes organizational and theological sense.  We discussed the theological pieces but she actually wrote them with a tiny bit of input from me.

Thinking theologically is very difficult for a brain injury survivor. This involves drawing many pieces together in one’s mind to come up with a clear idea, which is considered an “executive function”. Due to my frontal lobe injury, this is now very difficult if not impossible to do.  Theological reflection also is hard due to my mental flexibility, cognitive overload, and cognitive fatigue issues.

In the process of writing the book, Joyce and I did a dance with the theological pieces. I wanted to write them and my old way of being was to do this with no problem. I often told Joyce I would write something but after trying, I couldn’t come up with anything.  I didn’t want to admit that and I think this was hard for Joyce.  It didn’t happen all at once but slowly, I realized I wasn’t going to be able to write those pieces so I asked her to write them.
manuscript The same thing happened with Bill Gaventa’a request for a one page summary of the book. He is attending a conference next week and needed to have something available for folks to read.  My old self wanted to write it but Joyce gently reminded me of the speed of my writing.   It needed to be written quickly so she put it together.

I asked her if my contact information should be with hers on top. She hesitated and explained she knew the publishing process better than I.  Then she told me when Bill asked for a copy of the book so he could write the forward, I sent him an old version so that’s what he read.  Joyce sent him the newer version which he read while on a plane.

In the publishing world, mistakes like that cannot be made. Even after twenty years, it is hard to admit that I cannot do some things on my own. I’m getting much better with that realization but it still is a challenge.

“Always Go to the Funeral”

The sermon on Palm Sunday (April 13, 2014) at Grace Covenant Presbyterian Church was called “Always Go to the Funeral.”   I remember thinking, “Okay Mark (Ramsey), what does going to a funeral have to do with Palm Sunday?” I decided to go with it anyway for he often comes up with thought provoking titles.1538667_719948604693465_2194630115622714483_n[1]

He began by telling a story about the English poet John Milton. Milton tried to write a poem about the suffering of Jesus but all he could talk about was how HE felt about the suffering of Jesus so he gave up. Mark then outlined three reasons why it’s so difficult to be in the presence of anyone who suffers. I related to the first reason.

I can’t count the number of times I’ve told folks who know about my brain injury that I probably won’t remember their name. Often they say “I know how you feel because…” and then they launch into a long story about their own difficulty with remembering names. The problem is, they probably do not forget someone’s name after knowing them for a number of years which happens to me all the time.

It happened just his morning when I took my high intensity water aerobics class at the YMCA. A man whom I know at GCPC came for the first time and I wanted to introduce him to class members. The problem was, I couldn’t remember his name. I’ve learned how to hide my name recall issues but I’ve decided when it is appropriate, to ask their name. The first time I did this, the person was a little taken aback. He wasn’t rude (thank heavens!) and because of my honestly, he learned a little bit about some of the challenges of brain injury.

Mark pointed out that the only people Jesus knew who didn’t abandon him that last week was the women. When Jesus was crucified, his acquaintances, “including women who had followed him from Galilee, stood at a distance, watching these things.” (Luke 23:49) The women were the first people to visit him at the tomb. (Matthew 24:1, 2) I believe the reason for this was the women knew what it was like to suffer. The women knew what it was like to be separated from society. The women knew what it was like to have no power. (Yes, while it is MUCH better in our day, we still have a long way to go!)

The title for the sermon comes from a story told by Deirdre Sullivan and her philosophy to always go to the funeral. She wrote, “…I think a personal philosophy of going to funerals … means I have to do the right thing when I really, really don’t feel like it…I’m talking about those things that represent only inconvenience to me, but the world to the other guy. In going to funerals, I’ve come to believe that while I wait to make a grand, heroic gesture, I should just stick to the small inconveniences that let me share in life’s inevitable occasional calamity.”

In his sermon Mark said, “Sharing in life’s occasional calamity is what the church is supposed to be about. Isn’t that where the promises of God get their strongest test and their most prominent work out?” While this is true, during this Holy Week I want to celebrate all the folks who have brain injuries and how much you mean to me. I also want to celebrate what we mean to each other for unless you have been through it, you can’t really know what it is like.

I’m looking forward to attending the Institute on Theology and Disability this year. It’s a place where folks with disabilities are given a voice. We’re taken seriously whether we have had theological training or not. Many of us have suffered and in suffering, the Holy is found. So I am going to the funeral this week. I hope you’ll join me.

 

Walls

I’m writing a lot about the pool this month because I miss not being able to swim laps. I spoke with someone in the locker room at the Y this week who told me it’s been three years since she has been able to exercise fully. That helped put my situation in perspective, although I’m still impatient. The surgeon couldn’t tell me how much use of it would return. This morning in my water aerobics class, I had to use a flotation belt to avoid putting stress on my hand which I HATED. (I did swish my hand through the water to try and strengthen it, though.)
boy swimming
I love this picture of a boy swimming underwater next to a fish. It’s important for adults to stay in touch with the child inside for it reminds us not to take life so seriously. I think this is much easier when people have children or are around children often because children’s personalities are contagious. I’ve been neglecting the child deep inside but looking at this picture reminds me I need to let her out frequently. Swimming at the pool has always been one way I do this.

In Mark Ramsey’s sermon at Grace Covenant Presbyterian Church this past Sunday he said, “People have always liked walls. The walls of race, of status, and of gender have exiled so many.” I thought about my own walls. In a sense, those of us with a brain injury are walled off from the rest of the world. After an injury, a person experiences many changes. Perhaps their speech is different, they cannot remember things as before or they must use a wheel chair.

A phrase that is common in the brain injury community is, “the new normal.” In my case, this means having to “rest my brain” frequently or being careful my schedule is not too booked which wasn’t true before. It means not having a full-time job like many other folks. However, after having a TBI for a while, this statement doesn’t seem apply to me very well, if it ever did. My personality and way of being is pretty much the same as it was before my injury even back in the late 90’s. (My injury was in 1996)

However I do have walls up around me. Often people don’t “get” my difficulties with brain injury. How many people forget someone’s name 200 times after seeing them at least that many times? How many people enter a building and then have no idea which way to turn when leaving it to go home? How many people with two master’s degrees cannot do a simple math problem? I used to get angry when folks would compare their memory or math difficulties to mine. I was a member of an exclusive club–even if I didn’t want to be a member of it. I LIKED having my walls up for it felt safe and I didn’t want to break them down. This isn’t the case now for I’ve discovered it is stifling and lonely, being behind them.

I used to get angry inside when someone compared their memory issues to mine. They might say, “Oh I know what you mean. I can’t remember names either.” Now, when someone makes a comparison, I often say, “While your experience certainly gives you an idea of how frustrated I get when I can’t remember someone’s name, with brain injury one can see someone every day and STILL not remember their name.” This helps break down the wall while educating them about brain injury. When I didn’t say anything I seethed inside which wasn’t helpful to a good relationship.

Brain Injury does put us in exile as do many other things. Alcoholism, drug addiction, divorce, the loss of a child – all of those things can cause us to be in exile. Like the little boy above, who looked deeply into the fish’s eyes and the fish returned his gaze, all of us need to break down our walls and be free.

If you have a brain injury do you sometimes feel you’re in exile?  What other ways are you in exile?

iPad Mini

IpadI bought an iPad Mini today. I recently saw a webinar about devices which will help make life easier for someone who has a TBI. It was really for folks who work with brain injury survivors and not for the survivors themselves. It’s funny because while I have many, many challenges now, I still can do quite a bit but  I’ve discovered I need to get better organized to do so, which is why I got this device.

I am not computer literate at all. In fact, I don’t even know how to turn the iPad on which I discovered as I took the picture above. Michael and I went to the store together. He really knows computers which was so helpful for I didn’t even know what questions to ask. I depended on his brain this morning because mine wore out pretty early while we were there.

I also went to an Android training that was offered by U.S. Cellular earlier this morning. I’ve already attended several. In fact at the last one I attended a couple from Grace Covenant Presbyterian Church had just bought one and wanted to learn about it. I think most people go to those classes pretty soon after they buy their device but it takes me so long to learn new information that I’ve attended several.

The man this morning told me to come in any time for help which I’ve been doing. Due to my “worry-wart” personality, I worried the salespeople were bothered by my constant questions as well as having to take the time to write the information down for me. Over the years I’ve learned I must have things written down and go over it over and over again.  I’m developing new pathways for my neurons to travel which makes learning challenging.  It’s possible but it just takes a lot of time now.

I’m getting much better about asking for what I need. This morning as we looked at the iPad, I could feel my brain getting tired. I felt a bit woozy and I knew I needed to go somewhere, put in my ear plugs and “rest my brain.” I excused myself and went to the car as Michael continued with the salesperson. After fifteen or so minutes sitting in the car with the windows rolled down since it was hot, I returned.

It seems I have come a long way with this.  I’m trying to constantly ask for what I need because I don’t look like I need anything at all.  People haven’t known what to do to help me because I haven’t told them. I’m trying to be better about doing this.

If you have a brain injury, is it hard for you to describe what you need?  I have discovered that so many people just “don’t get it” and I’ve become committed to people “getting it.”  Folks will understand only if I tell them.  However, I am quite aware that unless a person has a TBI, it is very,very difficult to understand. Some folks never understand and I’m learning how to deal with this.

“On Our Way”

Funeral Procession of the Rev. Dr. Martin Luther King, April 9, 1968

Funeral Procession of the Rev. Dr. Martin Luther King, April 9, 1968

Mark Ramsey and Kristy Farber, the two pastors at Grace Covenant Presbyterian Church here in Asheville, NC are doing a sermon series on communion, baptisim, funerals and marriages. Last Sunday the day before Dr. Martin Luther King Day, Mark preached about funerals. I couldn’t help thinking, “Now how in the world is he going to preach about Dr. King and funerals in the same sermon?” Somehow, he managed to do so and I must say I was impressed with his thoughts.

Sermons are funny things. Mark preached this neat sermon about Dr. King and funerals and somehow I connected it to my own personal issues. I think this happens a lot which is what is great about sermons and worship services. God speaks to each of us through them often in ways the worship leaders do not even imagine. To hear his sermon, click the following link:
(There’s a real good chance I put this in wrong so in case I did, go to the web side http://www.gcpcusa.org then click on sermons on the right side. Next click on “On Our Way.”)

In it, Mark said that funerals call us to do three things. 1) Tell the truth about our lives 2) Lift up the promises of God 3) Due to this opportunity to look back, we are propelled forward. As I thought about his words, I realized that having a brain injury calls us to do these very same things. In the beginning, I would never share that I had a brain injury. In fact, I was advised by folks to keep it quiet. Since you wouldn’t know I have a TBI by looking at me, this was pretty easy. .

The problem? I was miserable. I didn’t like hiding the fact that I couldn’t remember someone’s name or I got lost all the time. I hated having to find a place by myself where I could “rest my brain” by putting in my ear plugs for a few minutes and closing my eyes. I do know that our world is set up for us to hide our true selves in order to “make it” and be successful. I’m fortunate that I receive disability benefits so I don’t have to fake it and boy did I ever fake it. I so wanted to be like everyone else by earning my own way in this world.

However, now that I’ve stopped “faking it,” I’m much happier. I recently had an expereince when I was talking to a man about his wife. I know both of them fairly well but I couldn’t remember her name and had to ask him what it was. Five years ago I would have faked it but then I just blurted out “Tell me your wife’s name?” He looked at me a little funny but I suspect he figured out it was an example of my TBI challenges.

I’ve also had many opportunites to tell folks what God has done in my life. Oh I may not do so directly but it is clear that God has been with me all throughout this journey and God is not going to leave me now! When I look back and see what God has done in my life, I am driven to serve God in the future.

Along with the picture printed above in the bulletin was a quote from one of Dr. King’s prayers. “O God, we thank thee for this golden privilege to worship thee. We come to thee today, grateful that thou hast kept us through the long night of the past and ushered us into the challenge of the present and the bright hope of the future. We thank thee for thy Church founded upon thy Word, that challenges us to do more than sing and pray, but go out and work as though the very answer to our prayers depended on us and not upon thee. Then, finally, help us to realize that we were created to shine like stars. Keep us, we pray, in perfect peace, help us to walk together, pray together, sing together, and live together until that day whan all God’s children, Black, White, Red and Yellow will rejoice in one common band of humanity in the kingdom of our Lord and our God, we pray, Amen.”

God has called those of us who have brain injuries to walk together and work so that others will not have to experience this same trauma. And if we meet someone who is a survivor, we are called to walk together with them for this is not an easy journey. However they,nor are we, ever alone.

What do you think about Mark’s three things we do in funerals? Telling the truth about our lives, lifting up the promises of God and being propelled forward? Can you relate to any of these in your life? I think this applies specifically to folks who have a disability or other challenges but it could also apply to anyone.

Waiting In Darkness

I went back through my blog and noticed how in my last few posts, I sounded rather depressed and frustrated that I have a TBI.  In fact, I didn’t like reading them for this reason.  However, I participated in an action on Saturday about the water issue here in Asheville and it energized me.  I do love actions!  I’ll say more about this later but first I want to comment on today’s devotional by Richard Rohr.

In it Rohr writes, “The darkness will never totally go away.  I’ve worked long enough in ministry to know that darkness isn’t going to disappear, but that, as John’s Gospel says, ‘the light shines on inside of the darkness, and the darkness will not overcomeit’ (1:5). He goes on to say that “the real question is how to receive the light and spread the light.”

Looking back over my posts, I see my darkness.  I often get mad when I can’t remember names or I get overstimulated. I can’t help thinking, “if only I didn’t have these challenges, I could do so much more!”  Sometimes I just lay on the couch and mope.  There’s even been days when I don’t bother getting out of bed because it seems I have no purpose in life.  “It would have been better if I had just died in my car accident all the years ago.  Then I could be with God and I wouldn’t have to deal with all these challenges,” I have thought.

Rohr says there are two ways to release our inner tension.  The first is to stop calling darkness darkness and to pretend it is passable light.  I’ve done this in the past and he is right.  His second suggestion is one that I find helpful just now. “Stand angrily, obsessively against it, but then you become a mirror image of it.  Everyone can usually see this but you!”  I did this on Saturday when I demonstrated against the states takeover of Asheville’s water system.

On the right, is a picture of me demonstrating as many in our legislature were driving to a Christmas dinner at the Grove Park Inn.  Folks lined the streets carrying signs against this take over.  It’s interesting to me that we were in the dark as we demonstrated. Rohr writes, “Our Christian wisdom is to name the darkness as darkness, and the Light as light, and to learn how to live and work in the Light so that darkness does not overcome us.”

We were standing in the darkness, as we often must do, when we work for peace and justice.  It isn’t fair that I have a brain injury just as it isn’t fair that so many folks must live with a disability.  We must “fit in” to a world that isn’t made for us.

One example of this for me is, I really enjoy singing in the choir at GCPC.  However, I can’t handle the stimulation as the choir processes in and out.  As a result, I’ve found a little room behind the Sanctuary where I can sit quietly wearing my ear-plugs so I may “rest my brain.”  This makes my darkness, as Rohr describes, “passable light.” 

At the end of his devotional, he writes “We must wait and work with hope inside of the darkness – while never doubting the light that God always is – and that we are too (Matthew 5:14).  That the narrow birth canal of God into the world –through the darkness and into an ever-greater Light.”

"All or Nothing"

The picture at left is of a book by Kathleen O’Connor called Jeremiah: Pain and Promise. I’ve always disliked Jeremiah and I’ve tended to skip it because it is so violent.  The God it depicts is not a God I want to serve so I’ve ignored  it and focused on other parts of Scripture.  In the preface O’Connor writes  “It (this book) is an interpretation of aspects of Jeremiah using insights drawn from contemporary studies of trauma and disaster.”

However, when I discovered this book published in 2011, I wanted to read it.  I’ve only read three chapters but I think it will give me important insights into Jeremiah. (I’ve also disliked Paul and so I contacted folks I know who might be aware of things I can read about him as well.  But my first focus is on Jeremiah.)

Reading books and retaining information is very difficult for brain injury survivors.  When I was cleaning out my files on brain injury, I came upon some old notes I had from rehab about reading and studying a book.  It used to be I could read something and then remember it right away.  I have gotten frustrated with all the things I must do to remember now and the way I’ve dealt with it was to completely stop reading biblical and theological books.

I must say, I do have an “all or nothing” mentality.  I get excited about things I used to be able to do easily  and want to be able to do them as I could before.  I also see folks around me who don’t have a brain injury who can do these things and I often compare myself to them.

When I do a lot of intellectual thinking, I become overstimulated which then makes me tired. As I went through my brain injury rehab files, I came upon a list of things to do for recreation and to “rest the brain.”   The list suggested “listening to music” which reminded me to stop and listen to a recording I have of Yo-Yo Ma playing the cello concerto in b minor.  Again, music touches my being way more than anything else.  So I stopped and listened to it.  I felt so much better.  Perhaps I can lick my “all or nothing” mentality!