Care Partner

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.

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.

Mental Fatigue

I recently read an article http://www.brainline.org/content/print.php about fatigue and TBI.  It described the three different kinds of fatigue common after a brain injury.  The first is physical fatigue which comes from muscle weakness from having to work harder to do things.  The second is psychological fatigue which comes with depression, anxiety and other psychological issues.

While both of these are challenging for me, the third is most challenging.  It is mental fatigue which I have mentioned before.  When I concentrate on something, I get tired.  Research is going on about this sort of fatigue and what sort of drugs may be helpful. Back in the 90’s I tried various medications but they didn’t work for me.  To be honest, I’m not excited about taking any more medications.

When I’m not involved in things, it isn’t a problem.  However, I tried that route and got bored.  I can control it somewhat by organizing my schedule.  I don’t plan to do two things that cause a lot of mental energy back to back without allowing time to “rest my brain.”  Now that I’m involved in more things, problems come up and I must deal with them immediately which in turn cause mental fatigue.

Rohr quote

In the Great Themes of Scripture, Richard Rohr made a statement that helps me here. “God gives us meaning, not answers.”   There is no answer and it is a waste of time for me to look for one. I do have to admit I often waste time in this fashion!   On my better days, I try to find meaning.

Do you agree with Rohr’s comment?  If you disagree, why? If you agree, what sort of meaning do you find in your struggles? 

Busy, Busy, Busy

My experiment to try to be more involved with things is certainly a bit of challenge for me now. When I was in Atlanta, I often became overloaded cognitively which meant too much information was coming at me and the only way I could handle it was to shut out the world for a few days. I also experienced mental fatigue since I have fewer neurons in my brain now. I vividly remember being so tired I had to lay on the sofa for a couple of days until I could function again. So when I moved here to Asheville, I dropped out of everything. The problem? I got bored. Now I’m trying to find some balance.

Next week, I have something four nights in a row. On top of that, I have other things I need to do on Sunday. My responsible side wants to do it all but because of my TBI, this no longer is posssible. The realty is, in our society everyone is too busy. Those of us who have brain injuries and other disabilities have to slow down and I believe we can teach the rest of the world this wisdom.

As for my schedule, I’ve made the decision to skip some events. I do understand folks tend to give me a “pass” because of my disability but I think everyone needs to really stop and ask themselves why they are so busy. Does it make us feel more important if our calendars are full? Are we afraid to spend time with those we love? Do we think we are following God by having a packed schedule?

One of my Facebook friends posted the following prayer by Thomas Merton today in celebration of his birthday. It’s a prayer I need to hear just now.

My Lord God, I have no idea where I am going. I do not see the road ahead of me. I cannot know for certain where it will end. Nor do I really know myself, and the fact that I think I am following your will does not mean that I am actually doing so. But I believe that the desire to please you does in fact please you. And I hope that I will never do anything apart from that desire. And I know that if I do this you will lead me by the right road, though I may know nothing about it. Therefore I will trust you always though I may seem to be lost and in the shadow of death. I will not fear, for you are ever with me, and you will never leave me to face my perils alone.

I do not know where I am going just as I didn’t know back in 1996 when I had my TBI. But it’s not just me. Many of us don’t know where we are going. I need to make choices so I can enjoy what God has given me and not have to spend my days sleeping on the couch! Like before, God will lead me through this wilderness. As Merton said, I may have no idea what is happening but it will happen. I do believe that God is always with me, and I will not be left alone.

Do you feel you’re too busy? How can you adjust your schedule so this isn’t the case? If you have a brain injury, do you struggle with your limitations?

“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.

"Overwhelming"

The title for Mark Ramsey’s sermon at Grace Covenant Presbyterian Church yesterday morning was “overwhelming.” It definitely got my attention since I have such a problem with being overwhelmed.  This is really an issue for folks who are brain injury survivors. Over stimulation, cognitive overload, and mental fatigue are just a few words which describe our feeling of being overwhelmed.

This picture was printed in the bulletin and I loved the Call to Worship.  I enter the sanctuary from behind the organ to avoid the overwhelming situation when I join the processional with the choir so I usually miss this part of the service.  However, for some reason yesterday I stood back on the stairs where I could hear it.

O God, open us to the powerful winds of your Spirit.
Open our eyes to the wonders of your creation.
Open our senses to the smells of new life.
Open our ears to the words of justice and truth.
Open our mouths to the taste of freedom and love.
Open our arms to the embrace of peace.

I am trying to be open to the winds of God’s Spirit but it is hard. In the past I thought being open to the Spirit meant getting involved in everything that came my way. This didn’t work.  It only stressed me out and I wasn’t good to anyone especially to God!  So when I moved to Asheville, I regrouped and didn’t get involved in much of anything.  What happened?  I got bored.

Now I’m trying to balance things out. I’m beginning to think that folks stay busy because they are afraid to be seized by the Spirit.  It’s easier to say “yes” to everything than it is to discern if something is what God is calling us to do.  I think this saying “yes” allows us to feel important.  But we miss out on so much of God’s world when we do this!

 I’ll never forget the hours I spent watching those baby robins hatch and grow until they were big enough to leave the nest. (see 5/13/12 post) I stopped what I had to do and watched. I opened my arms to God’s embrace.

Mark said something in his sermon yesterday that made sense to me. “If we are going to do anything about the problems that beset us, we have to confront the problems honestly.  During an age of overwhelmedness, however, it is difficult to look at things honestly.”

Sixteen years after sustaining my brain injury, I’m finally looking at things honestly.  I’m no longer pretending I remember someone’s name when I don’t, even after hearing it 125 times!  I’m no longer expecting to know my way when I’m going somewhere for the first time.  In fact,  I don’t even expect to know my way after going there hundreds of times.  It doesn’t mean I’m stupid.  It only means my brain was injured.  It’s who I am now and I can’t be someone I’m not, just to fit in.

I loved the way Mark referred to this past Sunday which was the  “Reign of Christ ” Sunday.  He said, “Here, at the end of the church’s year, we have a Sunday which we call the ‘Reign of Christ.’ Whether we can see it or NOT – we’re supposed to celebrate “the Reign of Christ.'” 

“Yeah right”, I wanted to shout. “Where in the world is Christ now?  People don’t have any where to live and it’s cold outside!  I’m tired of getting lost everywhere I go!  I want to work and earn my keep just like everyone else in this world!  And why are there so many people who have brain injuries who can barely get by on what little Social Security benefits they get?”  I look around and it doesn’t seem like Christ reigns at all.

Mark pointed out that the book of Revelation is a story that arises out of a troubled church.  “You can almost see them there – a little band of Christians, surrounded in the pagan cities.  They seemed so small, so overwhelmed…Where on earth might one find HOPE for the future in such circumstances?” He reminded us that Revelation is known for its “sustained outburst of exuberant joy and praise.  The vision begins, not in despair – but in doxology, in praise, in cadences that scholars believe were derived in great part from some of the hymns of the early church.”

He tells about the Wesley brothers and how they lived in the mid-18th century.  “The gin trade had led to huge problems with alcoholism….Child labor was the scourge of the land.  There was vast social dislocation and chaos.  Things seemed overwhelming.”  Yet in spite of this, they wrote some of our most beloved hymns such as “O For a Thousand Tongues to Sing, Hark the Herald Angels Sing, and Love Divine, All Loves Excelling.”

Mark suggests “if we really want to face our problems squarely, if we really want to stride into this new emerging world with confidence, the best thing we could do…is to sing.  Against all odds, when we join our voices together in some great hymn of praise, then you know – in the very depths of your being – that Jesus Christ reigns, that he shall rule until all things have been put under his feet, that the enemies of God will ultimately be defeated, that good will have the last word over evil, and tht all shall be well.”

Singing and listening to music touches a place deep in my soul.  I really cannot explain it but every time I sing, play or listen to music,  I leave my body and spend time with God.  I’ve been listening to classical music every day for this purpose.  Today I listened to Bloch’s Baal Shem Suite for violin and piano.  The first movement is Vidui (Contrition) which has a meditative quality.  When I hear it (and when I played it all those years ago) it felt like I was approaching God quietly, gently.

The second movement is Nigun (Improvisation) and that is where the music really soars.  Bloch expresses outgoing and uninhibited emotions here. When I listen, my spirit cries out to God “Why is there so much pain everywhere?  Where are You?  Don’t you care?”  Finally comes the third movement, Simchas Torah (Rejoicing). It’s as if God says to my spirit, “It’s okay.  I know it’s difficult some times but I am the center of all being.  Just hang on a little longer and rejoice in my creation!”    When I hear it (and when I played it) I felt God’s joy and my own spirit sang.

John Wesley and the other great hymn writers felt it.  Ernest Bloch felt it.  When I listen, sing or play their music I feel it too.  Mark ends his sermon with these words: “Praise…is how we were created to live, even in the most unlikely times and places.  You cannot know that…unless you live just that way.  And then, you experience an overwhelming, utterly hopeful way to live….even to the end of the world…..Amen”        

Beach

Michael and I went to Myrtle Beach for a few days this week.  I think this is the best time to go since hotels are cheaper and we can take Sparky.  Pictured at left is Michael and Sparky as they romped on the beach.

I’ve never really understood the need for vacations.  Oh I like going places but traveling is difficult for me.  I do better when things are consistent which is why I like staying home.  I know where things are and I don’t do well with anything unexpected. In fact, new information causes cognitive overload which makes me tired. I seem to have to “rest my brain” a lot which annoys me.  Michael convinced me that it would be good for me to get away from things for a few days so we went to the beach.

He was right. There is something about water that is healing to my spirit.  I enjoyed walking Sparky on the beach and wading in the water.  He’s not a water dog but he likes anything new and different so he had a good time as well. It was fun watching him take a big drink of the ocean and end up with a mouth full of salt water!

However, I did have something on my mind that I just couldn’t seem to get out of my head and as a result I used my Android to communicate with folks back in Asheville. It drove Michael a little bit nuts and at one point he got a little peeved with me.  He brought me back to my senses and I was able to put things aside.

The experience did get me thinking though.  I often get something on my mind and I need to deal with it right then.  I have a hard time putting something aside for later. I think sometimes I get too focused on something and then I suffer from mental fatigue because I’m thinking about it too much!

I had a phone meeting with my cognitive therapist last week and one thing she helped me with was coming up with a list of things I can do that are vital to my well being.  Among her suggestions were the following: “Be clear about my strengths and what I can offer. When I get stressed and stuck, put it down and do something else. Find my creative spirit on a regular basis.”

The beach put me in touch with my creative spirit.  Also when I helped drive home, we listened to the Dvorak Cello concerto as well as some pieces by Ernest Bloch.  Music is a sure fire way to tap into my creative energy as well as the Spirit and  I must say, I do feel better today than before we went to the beach!