A Way in the Wilderness

Elizabeth Kubler-Ross, Isaiah 43:19-21, journey, Uncategorized, wilderness

sparky on tripThis is a picture of my dog Sparky in our car lying in the midst of our belongings as we returned from our beach trip a couple of weeks ago. Worn-out, he lies among the clutter and I must admit, right now I feel the same way! I had hoped to return from the beach rested and raring to go, but that didn’t happen.

As I’ve done numerous times since my car accident, I’m focusing on Isaiah 43:18-19. “Do not remember the former things, or consider the things of old. 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.”

I don’t like being in the wilderness but it seems in this journey, there’s no way of avoiding it. Back in the late 90’s, there was so much improvement in my functioning that it was hard to focus on what I had lost. I didn’t feel buried in the wilderness until after my rehab. I knew I wasn’t ready to serve a church yet, but wondered what to do next. “What is wrong with me,” I thought. “Why don’t I feel like I’m accepting this?” After all, I had already been through all the five stages of grief outlined by Elizabeth Kubler-Ross: denial, anger, bargaining, depression and acceptance

I know now, acceptance is not a one-time event. It keeps happening over and over and over again. The neuropsychologist I saw back then, suggested that grief, rather than being in stages, is more like a coil. One keeps returning to the various stages but it’s easier each time.

While that image helped me for years, I recently found a picture which seems much truer to my experience for the brain injury journey isn’t a simple coil or road: my thoughts and feelings are all over the place.

I’ve always struggled with the verse in Isaiah about not remembering the former things. I know how important it is to remember the past and learn from it. However, here the prophet doesn’t mean to forget what has worked before but to move on and try new, creative things. Carlos F. Cardoza-Orlandi writes, “Faith is restored as we see things differently.”

So as I go forward along this road, I’m looking for the creative, life-giving, Spirit of God along the way. There will be days when my body feels like this picture looks and that’s okay. I must be patient for I will eventually see God making a way in the wilderness and rivers in the desert. God has done this in the past, and God will do it again in new,creative ways.


compensatory strategies, journey, overstimulation

Every now and then I get bummed. Sometimes, I think about simply staying home all day, reading books or checking Facebook and Twitter. There’s enough information flying around that I know I could fill my time just fine.

When I first moved to Asheville, that’s just what I did. I had pushed myself too hard in Atlanta and I didn’t want to do the same thing here. However, I got bored. Like other people of faith, I am called to work for justice and peace in whatever way I’m able. These are important words for me to remember- “in whatever way I’m able. My brain injury has given me many limitations but this doesn’t give me a reason to avoid working to bring God’s reign in the world.

One caveat here though. Every person’s brain injury is different and comparing what I’m able to do with another brain injury survivor, is not possible. I know survivors who are unable to speak or unable to use their arms and legs. They have a call as well but it is different from mine.

Try harder or walk awayThe saying on the left does not exactly work for brain injury folks. If I simply walked away from something when it didn’t work, I would be walking away from things often. The statement needs to read “…choose whether to walk away or TRY SMARTER.” If doing something differently – perhaps even a couple of different ways – doesn’t work then walking away is an option.

For years I sat in the congregation at Grace Presbyterian Church and thought about singing in the choir.   Since I can no longer play violin, music has always been painful for me. Even though I sing, I wanted it to be with a group where the director knows how to rehearse which isn’t always the true in churches. At GCPC, this isn’t the case.

Finally three years ago, I decided to sing in the choir and it really touched on the musical parts of me that have been dormant. I love singing in the choir! However, I had to do things differently in order to participate. This meant not processing in with them because to do so meant standing in the narthex which is very noisy. I began staying in a room below the sanctuary and doing my “resting brain” thing until it was time to enter. Along with a couple other adjustments, this worked so instead of quitting, I worked “smarter.”

Of course I must always determine whether my adjustment affects the projects at hand in a negative way. In most situations, this isn’t the case. Usually it just involves me being different than others and I can live with that. However, I do try and make it clear that if someone has a problem with this, they should speak to me about it and not talk behind my back. Unfortunately, I’ve discovered folks like to talk behind people’s backs!  I’ve learned that’s their problem and not mine, although this is easier to write than to believe!

In order to participate in things, I also must determine if my adjustments are harder on me than necessary. I visited a man on death row for years in Atlanta and it was very hard for me. I’m glad I did this but in my current situation, I would not make the same choice.

If you have a brain injury, how do you work smarter and not harder? Even if you don’t have one, I’d be interested in your comments.

New Vision

awareness, Depression, grief, journey

enjoy the journeyIn his sermon at Grace Covenant Presbyterian Church on Aug. 24, 2014, Mark Ramsey spoke about the Emmaus journey and how two weary, grieving disciples had bet their lives on the wrong savior. “After three years of imagination-stretched living, they can’t imagine how their time will be filled other than some wish-dream cobbled together by the tyranny of immediate and the already known.”

While my situation is not the same, I can relate all too well. I started out my adult life as a freelance violinist/violist in the Kansas City area with a vision of being in a professional orchestra. After traveling to one audition in a city I can’t even remember, I thought long and hard about whether my dream was realistic. I also thought about what achieving this vision would entail.

During a difficult time of discernment, a pastor suggested I consider the ministry. At first, I was taken aback. Me, a minister? No way! Like the disciples, I had bet my life that God was calling me to be a professional musician. I had imagined I would spend my time serving God by playing in an orchestra, doing freelance work and teaching. All my years of practicing and imagination-stretched living, seemed to have been for nothing.

However, as I thought about it, it made sense. While continuing with my private students and doing some freelance work just to make sure I was on the right path, I took classes part time at Central Baptist Seminary. When I felt called to give up my music contacts in Kansas City, I transferred to Columbia Theological Seminary in Atlanta, GA to finish my degree.

I loved the theological discussions seminary provided. It was a difficult year after graduation before receiving my first call but God did call me to a church in Atlanta. I am thankful for that call because I learned quite a bit about what being a pastor meant. After a few years though, it was time to move in. I was in the process of looking for another position when my car accident happened. A new vision was harder for me this time since lack of awareness is one of the hallmarks of a brain injury. It took me a long time before realizing I wasn’t going to be a pastor of a church again.

Years have passed and depression has always been part of my journey. It’s a hallmark of brain injury and I’m not immune to it at all. It’s appeared over and over again these past 18 years. Recently it’s been a problem and I’ve been dragging for several months now but yesterday, I had a little glimmer of hope. I’ve seen therapists for years and it’s my belief that anyone in a helping profession must see one. While I am no longer in a “helping profession,” I am, and will always be, “a helper.”

I’ve had a difficult time connecting with someone here in Asheville though. It’s important to find the right fit, which finally happened. In my session yesterday, I was able to express some of my feelings and concerns and got in touch with parts of myself often buried. We are often hurt by what is buried without even knowing what is happening. Yesterday, I glimpsed a better future for me. I still grieve for what I’ve lost but now I’m looking forward to what’s in store.

There was a quote in the bulletin on Aug. 24 by Peter Gomes, Minister of Harvard’s Memorial Church, 1970-2011. “When people come to The Memorial Church on Christmas Eve and on Easter Day, I always say, ‘If you have come for an explanation this evening, or this morning, and you want me to explain the virgin birth, you are in the wrong place. Why don’t you leave now? Leave the seat for somebody else, and we will get on with it.”

Resurrection, new life and new visions, are not easy. I have no idea what the future holds for me but I’m going to keep on the journey even though I can’t imagine how it will unfold. I’ve seen too many folks in their 50’s and 60’s who give up because they think it’s too late for them. I don’t believe it’s ever too late for a new vision or a new resurrection. I believe Resurrection happened long ago and it still happens today.

I’m going to enjoy my journey.

Care Partner

cognitive overload;, John Swinton, journey, mental fatigue, over stimulation, Uncategorized

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.

Hobo in the Wilderness

journey, Lent

IMG_20140312_163307_684March 5 was Ash Wednesday, the beginning of Lent, and I spent the day in bed with a horrible sore throat. In fact I was sick several days last week which was frustrating since Lent is my favorite time of the year. I had decided not to use one of Ed Hays’ devotional guides which I use every year. However, after attending Circle of Mercy on Sunday evening, I changed my mind. The worship service contained so many wilderness references and I saw a connection with the idea of journey present in Hays devotionals, so I pulled out one of his books, “The Hobo Honeymoon” to use this year.

For “Fat Tuesday” he writes, “While both the idea of a honeymoon and of being a hobo might seem inappropriate for the holy season of Lent, remember the words of the great patriarch Moses, who proudly declared, ‘My father was a wandering Aramean, and we were traveling vagabonds and vagrants who found our way to Egypt and lived there as aliens’ (Deuteronomy 26:5). Your spiritual ancestors were hobos, so rejoice in your proud heritage of traveling vagabonds as you begin these forty days.”
I’m not keen on the Honeymoon idea but I do like the concept of a wanderer. Hays points out that wanderers were put into three classes: tramps, bums and hobos. A hobo was a migratory laborer who took on various odd jobs. During Lent, one becomes a Lenten pilgrim on a road of reform and renewal.

At Circle of Mercy this past Sunday, Nancy Sehested preached on the temptation of Jesus in Matthew 4:1-11. I especially like that she used Clarence Jordan’s adaption of the passage. Instead of calling the devil, “the tempter” Jordan calls him, “the confuser.” She suggests the “tempter” moved in at the point of Jesus’ strength. “Jesus was tempted to do good. Make bread. Lead the Temple. Lead the nations.” Using Jordan’s description of the confuser she continued, “The confuser knows where we are strongest. That’s why it is so confusing. We are tempted not so much to do bad things. We are tempted to do good things with bad intent.”

While I know it isn’t exactly the same, her sermon pushed me to think about how my strengths have gotten confused. It seems I’m so aware of my weaknesses, I don’t even see my strengths. The Confuser encourages me to believe I don’t have any strengths for I often see only my weaknesses. A while ago, a therapist suggested I make a list of my losses as well as a list of words which describe the essence of who I am. Looking back on it, I see it is really a list of my strengths and weaknesses.

Sometimes it seems I spend a lot of time in the wilderness. I wonder, “What is wrong with me? Why can’t things ever be settled and consistent? Why do I spend so much time here?” Nancy pointed out Jesus never escaped the wilderness for it was always with him. This Lent, I’m going to be a Lenten hobo in the wilderness.

Nancy calls wilderness a gift. “It is a doorway into living out of a deeper truth. If we can stay in the pain, the emptiness, the confusion long enough, then maybe we can recognize that the only recognition we need is from God. Wilderness is a time to allow the pain to teach us.” I want to learn how Jesus lived in his wanderings as I journey this year towards Easter.

“On Our Way”

awareness, disability, Dr. Martin Luther King, journey, memory, mental fatigue, resting brain, survivor, Uncategorized
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.

A Way in the Wilderness

creative, Depression, Isaiah 43:19-21, journey

My favorite Scripture is in my head today.  “Do not remember the former things, or consider the things of old. 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 , to give drink to my chosen people, the people whom I formed for myself so that they might declare my praise.” (Isaiah 43:18-21)

This Scripture has been important to me ever since I sustained my brain injury back in 1996.  After many months or rehab when I began volunteering at a hospice and then at the Open Door Community – which is considered a “Protestant Catholic Worker House” in Atlanta – I thought of these words.  When both things didn’t work out due to my brain injury challenges, I began volunteering as a Chaplain at a retirement community in town.

Working there was quite a journey through the wilderness for me.  First I couldn’t drive so I took the bus.  I wore my tennis shoes to walk to the bus stop and when I arrived at the center, I changed into my dress shoes, putting my tennis shoes into my Lands End bag.   I met some wonderful folks there and was able to participate in some significant ministry.

I struggled with depression then.  In fact, I have  struggled with depression my whole life.  Sometimes I think creative folks experience the darkness of the world to a greater extent than other folks do.  I believe depression is a physical issue and I’m just one of those people who’ve had to learn how to live with it.  I do think I feel things, both good and bad, more deeply than other people but as hard as it is, I do so see it as a gift.

Depression is part of any brain injury.  I don’t really understand the mechanics of it but I do know that many, many brain injury survivors must battle it.  Although it certainly is not fun, I have learned techniques to manage it.  Writting helps me immensely.  I’d be embarrised if folks read some of my journal entries since this is where I let my darkness out but I write none the less.

Music is another outlet for me.  I often will sing at home when I’m alone and this really helps me express my emotions.  Swimming helps as well.  I take a pretty intense water aoerobics class and this past Tuesday I really let the water have it.  I pounded my arms into it and kicked my legs through it.  It wore me out but it felt so good!

So yes, I’m on a journey through the wilderness. God gives me water  and I’m not alone.

Do you experience depression?  If you do, how do you deal with it?  Do folks understand you or do you feel very alone with it?  If you have a brain injury, have you noticed it is worse not than before?  Feel free to comment here – I think commenting on WordPress is much easier than on Blogger.  I will have to figure out how to use WordPress though so it will probably be a while before I figure out how to post pictures!

Rep. Gabrielle Giffords

Giffords and Kelly, journey, TBI history

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