Tuesday, January 31, 2012

Evolution is Real

I met her in October of 1973 at Susie’s birthday party.  It was a college birthday party with good, like-minded friends, you get the picture.  She was going out with a friend of mine who was studying architecture, I was a free agent and we eventually found each other.

Over the ensuing 35+ years, our marriage, like most, has gone from the thrill of young love and new caresses to the precipice of marital disaster.  Unlike some it has morphed into a steady, unrelenting faith in each other.  Over the past decades Marty and I have loved, fought, cried and laughed, often, often all on the same day, as our relationship evolved.

I met Marty at the party, I got to know her when I drove her to David and Susie’s wedding in Dallas and got to know her even better after my friend, her boyfriend, left Texas Tech.  Our friendship evolved over the weeks and months and slowly became something much deeper and I found all I wanted to do was hang with and talk with this rather unique woman.

I have always been one of those guys who easily fall in love; I fell in love with almost any woman who expressed an interest in me, a little scary for some women.  It was different with Marty because Marty was different.  She was pretty, she was witty, she was whip smart, she was driven, independent, knew what she wanted to do with her life and amazingly irreverent.  I fell in like and then in love with Marty’s mind, with her personality and with her brain.

We married in January of 1976, much too young and much too immature to have any real hope of surviving the wars and ravages of living a life time with someone.

Ultimately we had to raise each other, learn on the fly.  We learned from each other, we fed off each other; we started to slowly grow into full fledged adults with adult like responsibilities.  It was a painful learning process for both of us as we tried to understand the dynamics and emotions of actual living that so often would override the love we clearly had for each other.  We pissed and moaned and argued and fought over the traditional stuff, over the non-traditional stuff, over too many things that didn’t really matter.

When Matt, our first born, was born in Paris we had something else to learn about, a child and how to care for him.  Then we moved to Muenster and we had another child, Erin.  Children, as it happens, in addition to being the hope for the future, incrementally add stress to a growing relationship.  Our marriage, our relationship, those things most important to us was irrevocably changed with children.

Marty, to her undying credit, never let us be sloppy in the marriage, we had to discuss, we had to question, we had to answer, we had to close every stinking argument.  I pushed back and chafed against this unrelenting force of solving all problems, it was exhausting; it was like being in therapy 24 hours a day.  Our pursuit of relationship nirvana didn’t always help, it didn’t always come out right, but it did always keep the third partner in our marriage, the relationship itself, foremost in our minds.

We kept moving to different towns as I received various promotions and opportunities in my career.  Eventually the moving, following my job, became our biggest source of conflict.  Marty was okay with leaving Paris, she was not okay with leaving Muenster, she was really not okay with leaving Hillsboro, and I promised I would not move her from Waco, unless….

In the blink of an eye our partnership once again evolved.  Matt graduated, Erin was on her way out the door when I started working out of Dallas with the thought that once Erin graduated maybe we would just move to Dallas.  That didn’t happen and for four years I spent the week in Dallas and the weekends in Waco.  We were childless and for the most part living apart.  We still talked, every day, we still argued, we still problem solved, we still analyzed but it wasn’t the same.  Distance does not always make the heart grow fonder; sometimes distance adds a chasm that is very difficult to bridge.  It was not a good time, we were both lonely, both angry, both stuck.  Our marriage teetered on a very delicate precipice; this was not a good change.

When I got laid off at the end of 2004 I came home to Marty and a completely new dynamic.  For the first time in 20 years we were in a house together, alone, without children.  We had spent so much time apart the last four years it was hard, it was tentative, it was little scary.  We had hit one of those milestones most long term married people hit, alone at last and a bit afraid of the quiet.  

We were just starting to really feel our way into this new phase of our relationship when she had the first stroke.  Too early and too young we hit a brand new stage where one had to care for the other, where one had to handle everything for the other, where both came face to face with mortality, where both came to grips with vows made 30 years previous.

I can honestly say I know without any doubt at all that I love my wife more today than ever.  I think Marty feels the same.  Our love, our marriage, our relationship, is very different, in some ways harder, in some ways easier.  The up side is there is no conflict; the down side is….there is no conflict, no flint to harden the steel, no one pushing me to continue to find myself, no one challenging me on a daily basis to be a better husband, to be a better man.  How weird is it that I miss that?

Our marriage, though at times very rocky, simply continued to mature, to ripen, to get stronger.  In spite of ourselves, in spite of the time apart, in spite of the strokes, we got better at being together.  We were never good at everything but we really were good at maybe the most important thing, tending and nurturing the marriage.  

Marty’s unrelenting skill at self discovery, my realization that  she didn’t want me to fix everything all of the time and my discovery of the simple phrase, “how do you feel about that,” made both of us better, if not ideal partners.  It’s all different now, I think we have skipped some evolutionary steps but we are where we are, we are what we are and it’s been a fascinating journey so far.

Thursday, January 19, 2012

Locked Up

There is a very rare phenomenon known as anesthesia awareness, where under general anesthesia, during surgery, some patients wake up during the surgery and are aware of what is happening but because of the anesthesia can’t say anything to alert the medical staff that they are awake and aware.  I can’t even imagine how frightening, how totally helpless you would feel.

I think, for Marty, that’s kind of the way it is in her head because of the strokes. 

She sees things, she hears things, she understands things, she is aware of everything that goes on around her; her brain just can’t bridge all of those thoughts and ideas to her verbal center. She simply can’t put to voice the awareness and thoughts that are stuck in her brain.   For Marty, who had few thoughts that didn’t get voiced, who always expressed her opinions, who had a never ending supply of suggestions and ideas, it is torture to listen to the people around her and not be able to participate.

The other day Marty sat in front of the piano, eyes locked on the sheet music for “Dream a Little Dream of Me.”  Her right hand was resting on the ivory and black keys of the piano, not moving.  I sat to her left and watched as she sat there frozen, mentally processing, absorbing the notes on the paper in her brain and trying to then transmit those notes to her right hand.  She was stuck, she knew what she wanted to do, she just couldn’t initiate.

I sat there and said, “On your mark, get set, GO.”

Marty sat there, locked at the page, smiled and said, “Say it again.”

“On your mark, get set,” I paused, looked at her as she intently focused on the page, and said, “GO.”

She started to play, moving her hand across the piano keys with a skill that belies her disability, hitting the single notes, deciphering and fingering the chords, the music lifted from our piano, “Stars shining bright above you….”

Marty played haltingly through the song and then we moved to the next few songs as she worked her way through the myriad of notes, the flats, the sharps, the chords, the time, the tempo; a language foreign to me, one she has been fluent in for decades.

My mother taught me the notes, Every Good Boy Deserves All Good Favors, or something like that, many years ago.  I could correlate that to the keys on the piano but it makes for a very, very slow and stilted musical piece when you have to recite the “reminder” for every note you play.  The notes, the connection of those notes to the piano are rooted so deeply in Marty’s brain the strokes couldn’t erase them.

After she played the piano for a while I asked Marty if playing, if getting stuck in the process was frustrating.  

“Sure it is.”  She said.  “I know the notes, I know the fingering, I just can’t get my hand to move.”
It is the most frustrating part of her life, the most poignant, the most painful part of brain trauma for Marty.  I suspect she is not alone, to have words in you that you can’t get out, to have thoughts and feelings and no means to express them completely and accurately must be excruciating. So much of what Marty was, is still there, stuck, unable to be given voice, unable to be pulled out of her scarred brain.  

When there are distractions, when there are a lot of people having multiple conversations, when she is fatigued Marty’s brain, lets her down, it gets locked up, just like at the piano where she knows the notes, she instinctively knows the fingering, in her brain.  She can’t get the damn fingers moving in time, in tempo, with the grace and skill of the musician her brain knows her to be.  Just like the piano she can’t get the words from her brain to the tongue, her thoughts have no voice, like the notes on the page have no sound.

The brain is remarkably complicated.  It takes a tiny pin hole in a tiny blister in very small blood vessels to radically alter someone’s life forever.  Microscopic blood cells clotted together, reducing blood flow to parts of the brain can damage enough cells to make even the simplest of life’s tasks insurmountable.  Both of these tiny events conspired to damage enough of Marty’s brain to rob her of her voice, but they didn’t take who she is.

The brain can be remarkably resilient, finding new pathways, finding new ways to do some of life’s simplest tasks, or even some of life’s more complicated skills, like playing a piano.  Marty has never stopped her recovery.  Six years after the first stroke, five years after the second, I still see Marty finding new ways to perform old skills; I still see her brain trying to find ways to free her from the strokes.  

On her best days, without distraction, one-on-one, Marty can have a conversation about many things. On her best days Marty can still say things that she knows are funny, that she knows will make me laugh.   On her best days, when she feels good, has slept and is focused, Marty can talk to you and get some of those thoughts in her head into the universe.  She really had a marvelous brain.

Saturday, January 14, 2012

An Undetermined Amount of Time -- The 2nd One -- Part IV

I remember sitting in the waiting area of our new temporary home, St. Catherine Center, a sub-acute care center in Waco.  It was adjacent to the hospital we had just left and was king of a way station for people too sick to go home, but not acute enough to be in the hospital.  

I remember waiting for her room; they were running a little behind in getting it ready.   I remember how cold she seemed sitting pale and hunched over in her wheelchair as I pulled a blanket tight around her shoulders and rolled her chair into the sun.  We both felt completely lost, afraid and alone.

It was the middle of January, 2006, and we had just moved from the hospital where Marty had stayed for about two weeks as the result of her 2nd stroke and a mortal fight with pneumonia.  We had just recovered from her disconcerting overnight warehousing in a surgical recovery area and I had just recovered from being massively angry and guilty from not being able to protect my very vulnerable wife from the overcrowding at the hospital.  We were now in a new environment and I clearly remember wishing I was smarter and more capable than I was.

We sat there for what seemed an eternity, alone, cold and pathetic.  It really probably wasn’t that long before a pleasant certified nursing assistant came and took us to Marty’s semi-private room that was to be Marty’s home, my home for an undetermined amount of time.  I hated, I still hate, undetermined amounts of time.

The room was gray, of course.  There were a couple of windows, a hospital bed, a phone, a television and a single overstuffed chair that folded out into the single most uncomfortable sleeping device known to man.  

Marty was exhausted from sitting in her wheelchair for the transfer from the hospital.  She was still incredibly weak and seemed so frail and it was the first time she had sat in her chair for an extended period of time.  A couple of attendants carefully moved her to her new bed and she slept.  I fretted, I paced, I stressed, sitting alone in the room with Marty while we waited for the physical therapist to come and evaluate her to determine our next steps.  

The therapist eventually arrived and I felt like I was being evaluated as she pushed and prodded and bent Marty, it felt kind of like a trial. I wish I knew then what I know now, I could have been a better advocate, but back then I was hoping against hope that Marty would walk again, she would be able to care for herself again, she would regain some of what she was before the 2nd stroke.  I was naive and didn’t understand where life had taken us.

Marty rested for a couple of days and started taking antibiotics for a urinary tract infection.  I slept at night next to her in the bed from hell.  Marty never slept alone at St. Catherine’s or for that matter anywhere.  She was just too vulnerable, people with brain injuries need an advocate, I eventually became a good one, but that was much later.

Our kids did the most remarkable thing any 20 something’s could do; they regularly and willingly spent the night with their mother and gave their father respite.  As I look back at what Matt and Erin did, what they willingly did for their mother, for me, I’m amazed.   We all were spending the night stealing and stacking plastic encased pillows on an awful bed without any privacy watching over your very brittle mother.  One word and I hope they know, amazing. 

The hours we spent at St. Catherine’s morphed into days and the days folded into weeks.  I was with Marty most of the time.   The embarrassing upside to this is that I saw every episode of Dawson’s Creek. When I wasn’t there our children were, or my family, my father even took a turn encouraging Marty on the arm bike.  The week days were filled with therapy.  

Physical and Occupation therapy were done a simultaneously in a large room filled with tables, mats, poles, crutches, slings and other broken people trying to heal.  They worked with Marty sitting, trying to get her to touch their hand as they moved it around her, that helped her balance.  They put her in a swing and pushed her back and forth to work on her equilibrium.  They had her use an arm bike and they slowly started training me, showing me what I could do and what I shouldn’t do.

I was like a father watching his young child playing baseball for the first time.  I encouraged, was discouraged, I was proud and at times a bit embarrassed by Marty’s inability to stay awake and focused on the assigned tasks; it was like trying to get your child in the outfield to quit the daisy hunting.  I didn’t know, I didn’t understand how much Marty needed to sleep, to rest, to recover.  It took me three years to understand how hard and exhausting everything was for Marty.

I went with Marty everyday for speech therapy.  Again, cheering her on, hoping she would remember things from the day before, and hoping that the electrodes fixed to her throat would help her to do something as basic, as simple, as swallowing liquid without choking.  Therapy was the same thing every day of the week, the work didn’t seem much but it exhausted Marty every day.

One of the things I didn’t understand from the first stroke was the adverse affect strokes have on swallowing.  It makes sense because her whole left side had been affected  and because of  that swallowing regular fluids or regular food would cause chocking or aspiration.  Stroke patients, based on the results of swallow studies, x-rays while eating barium coated food, get either regular food, soft mechanical, or pureed; all self explanatory. 

Marty ate pureed food and drank thickened fluids, the texture of the food helped with the swallowing and choking.  The food looked awful.  There would be the brown food, the green food and the orange food.  The drinks were all as thick as honey, the water looked like paste.  Marty ate and drank and never complained, not one time, not one day.  She ate for survival and she drank whatever I put in front of her.  I think one of the most remarkable parts of Marty’s recovery was her ability to eat things that were to the eye, inedible.

The undetermined amount of time felt like an eternity, a stay at the Hotel California.  When the therapy began to wane because Marty wasn’t making enough progress, because they knew Marty wasn’t going to physically progress much more, time virtually stopped. That was when the speech pathologist first mentioned Pate Rehab in Dallas.

On our last afternoon at St. Catherine’s, in the blowing April wind, I helped Marty into a van taking her to Pate Rehab center in Dallas.  We started on the next step in our journey; I packed for an undetermined amount of time.

Friday, January 6, 2012

And God Smiled

I play at golf.  I have no faith in my game.  I hit the ball all over the place and when I address the ball I never know if the good Larry or the evil Larry is going to hit the ball.  Lately, my golf game is kind of a metaphor for my religious views.

I continue to play golf in spite of the evil Larry because when the good Larry stands at the ball, takes a back swing and hits the golf ball on the sweet spot of the club and the ball rises and goes straight and true and long, it is a wonderful feeling.  It is why I play golf, eternal hope that the good Larry will prevail more than the evil, chili-dipping, shanking, slicing Larry.  It’s the same with my faith, I try to be eternally optimistic that I’m going to believe as I should believe.

I identify as a Christian because that’s how I was raised and that’s what I want to believe.  I struggle with my belief or more accurately my unbelief.  Not every day, because I don’t think about it every day, I struggle on the days I think about what I just cannot believe.  I have often wondered if I am Christian enough because I have doubts about the Bible, Immaculate Conception, the Holy Ghost and a litany of other beliefs.  But, sometimes, events occur that shine a light on the importance of my doubts. 

On Christmas day Marty and I sat in our van in the parking lot of 1st Presbyterian Church in Waco, our church of 20 years.  It was misting, it was cool, it was overcast and there were only about three other cars in the parking lot.  I looked across the street at the building that is our church and remembered the past, flashed on the events of our lives that revolved around the church and wondered how we fit into this place that has always been such a prominent part of our personal history.

Marty and I were sans caregiver today so I moved her wheelchair to the lift and down she went into the damp parking lot.  We scurried across a sleepy street, up the ramp to the church and the heavy wooden doors came open, opened by a familiar face welcoming us to our church.  

Church services on Christmas day are sparsely attended because of all of the family functions and the fat man with the beard.  It’s a toned down affair where everyone sits at the front for the abbreviated service.  Our minister, Jimmie, was dressed, not in his normal robes but jeans and a plaid pull-over hoody. 

He greeted Marty and I warmly and helped me situate Marty in our pew, the pew we sat in for Erin’s wedding, the pew that had been moved over to accommodate a wheelchair, the pew our children sat in Sunday after Sunday while Marty and I sat behind them.  

The small crowd settled into their spots around us as Jimmie dipped his hands into the waters of the baptismal font and said, “Welcome home children of God.”  There we were, Marty in her wheelchair, me dressed in doubt.

I knew this was going to be a little different service as Becky, the organist, sat at the grand piano right in front of us and began playing “Go Tell it on the Mountain.”  Marty and her women’s chorus rocked this gospel tune many times; it’s a toe-tapper.  Becky was bobbing her head and weaving as she played.  Presbyterians, being the frozen chosen, don’t often bob and weave in a church service.

As the service progressed we said prayers and began singing a Christmas carol.  Marty loved to sing but doesn’t sing very much anymore.  The strokes affected her vocal control and she can’t maintain her pitch very well and she doesn’t like that.  But, there she sat, in our pew, singing “Hark the Herald Angels Sing” just as surely and loudly as the rest of us.  I looked up at Jimmie standing behind the pulpit singing, watching Marty singing, and I remembered why I loved being there, it wasn’t about my belief or unbelief, it was about our belonging to a community of doubters and believers.

We moved through the rest of the service praying, singing and listening, then as the service came to an end Jimmie and his sidekick DeDe came down from the chancel area to stand between the pews and deliver the charge and the benediction.  The charge is the same every week, I have heard it, Marty has heard it hundreds of times, it is part of the service Marty knows and loves.  It is part of the service that carries great meaning for me.

As Jimmie walked past the baptismal font he once again dipped his hands in the water, shook them off, walked up to Marty and put his hands on her face, connecting Marty to him, connecting Marty to our past, cementing Marty to our faith in a loving God.

Jimmie stood and started the charge, “Go out into the world in peace.”  

Marty, surprisingly, without hesitation, without embarrassment or self-consciousness said, in full voice for all to hear “Have courage.”  

Jimmie looked at Marty and continued with the litany, “hold on to what is good,” and Marty replied “return no evil for evil.”

Jimmie then walked up to Marty, bent over and wrapped his arms around her shoulders and together, with her broken memory responding and his gentle reminders, they continued and completed the charge to all Christians, to all people of faith, even those like me who doubt their own belief, “Strengthen the faint-hearted, support the weak and help the suffering, honor all people, love and serve the Lord, rejoicing in the power of the Holy Spirit.”

DeDe, the young woman minister assisting Jimmie that Christmas day struggled with her tears, and closed the service with the Benediction.  I sat there and struggled to tamp down my own tears as I felt Marty’s action bring a sense of peace on this day for all who were there.  It was no longer about my doubts or my faith.

Marty and I went back out the doors of the church, through the heavy mist and across the still deserted road.  I put Marty on the lift and in the van and got her locked down in the van, forgetting about my doubts, not worrying at all about what I didn’t believe.  Through Marty’s unrelenting courage to recover and Jimmie’s recognition of God’s grace through Marty,  I remembered, it’s not about what I don’t understand or struggle over, it’s about what God does and I believe God smiled at us that day through my wife.