What I Learn from Marty

Evolution is Real

2012-01-31T19:51:00.000-06:00

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.

Locked Up

2012-01-19T19:31:00.000-06:00

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.

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

2012-01-14T19:30:00.000-06:00

The 2nd One -- Part I -- Back Again

The 2nd One -- Part II -- Pneumonia

The 2nd One -- Part III -- I'm Pissed

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 2^nd 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 2^nd 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.

And God Smiled

2012-01-06T19:15:00.001-06:00

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 1^st 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.

In Denial

2011-12-31T10:50:00.000-06:00

In April of 2005, as Marty lay in a coma in the ICU of Zale-Lipsy hospital, I sat beside her every day thinking of our past and looking forward to the day we would get out of the hospital and go home. I kept saying to her young doctor, his job was to get us home as soon as possible. He was honest but he humored me and never once tried to bring a tinge of reality into my denial of the long term implications of a hemorrhagic stroke. I should have been terrified of the future; I should have run for the hills. It was denial and ignorance that kept me sane and kept me from running away.

Marty was/is an educational psychologist. Marty was/is a student of the mind and she never once let me get away with the standard denial bull shit so many of us practice every day in our relationships. She prodded, she pushed, she bullied me into dealing with my psychoses and would not let me sit in the comfortable denial recliner. These last few years, living with Marty’s illness and accompanying frailty, has taught me something else, denial can keep you sane.

If, as I stood beside Marty in that ICU, I had been forced to come to grips with reality, with what we really faced, the months and the years of illness, fear, disability, loneliness, anger, I don’t know if I could have remained standing beside Marty. If I had been forced to look at the whole of what lay ahead of us, if I had seen the future, if ever I looked that far ahead I don’t believe I could have been able to cope. I purely and simply would have been emotionally and cognitively overwhelmed with worry over the future and my ability to live in that future.

It was my ability to hide, my ability to not look too far ahead, my own ignorance that allowed me to take things one day at a time. It certainly wasn’t some intangible, internal strength that drove me to “live one day at a time”, I suck at that. It was fear of the future, it was ignorance of the seriousness of the illness, it was denial of the reality of our situation that pushed me to just handle one moment, one procedure at a time.

I’m not saying I could live and dwell in the house of denial forever; I wish. I’m saying in the darkest of times when I was most afraid, when I knew the least, the most natural defense was to deny reality and think fanciful thoughts that everything would be just “fine”.

Eventually, as our life together moved forward, I got stronger; I recovered from the initial shock of the tragedies of the strokes and began a process of education, understanding and self-evaluation. It was the necessary survival progression, to move from denial to acceptance to understanding action. Denial helped me survive, helped our family survive, and consequently helped Marty survive.

Denial can be a safe haven, it can be a refuge, but it can never become a hiding place. Denial can keep you paralyzed, it can keep you from dealing with reality, classic denial can keep you from seeing the change you need to address. Marty would say that inappropriate denial is dangerous and you have to confront reality. If you build your foundations in denial it can become an excuse not to move, not to take action, not to change. Truthfully, I’ve been there.

Years ago our son, Matt, developed a staph infection in his leg. He was hospitalized for several days while taking IV antibiotics. When we were release we were all thrilled to go home and be past this little ordeal. It seemed like only hours after we were released his leg started to swell again and you could see the redness and the inflammation of the infection start to spread. Marty immediately chose action; I kept saying it would be okay, I chose denial. I didn’t want to take this kid back to the hospital; I didn’t want to spend any more time there. Marty was right, we needed to act quickly, I was paralyzed with, his will get better on its own, a classic denial of reality. The reality is it took surgery, another three weeks in the hospital and six weeks of IV antibiotic at home.

Standing in the hospital ER, waiting beside Marty in the ICU, going through rehab with Marty my ability to delay seeing the long picture kept me sane, tamped down my fear. Being home with Marty, when she is getting sick, when there are signs of illness, denial, hoping against hope, doesn’t work, action is required. I think I now understand the difference, most of the time, even without Marty there to keep my magical thinking in check.

I don’t think forgoing reality for a short period of time is a bad thing, I don’t think it’s a sign of weakness or inability to cope. Denial can get us through the worst, most frightening of times, at least it did me. It can let us continue to live our flights of fancy just long enough, until we are strong enough, until we can exist in the moment enough to deal with reality.

Denial ain’t just a river in Egypt, in the worst of times it kept me sane.

The Absence of Bad

2011-12-22T19:01:00.000-06:00

I send out an annual Christmas letter. Sorry, I know, I know, but it’s not really the narcissistic, four page, every things perfect kind of Christmas letter, we haven’t ever seen perfect. Mine is the, “I’m going to tell you some really basic stuff about our survival that you may or may not want to know once a year” kind of Christmas letter. Hey it’s my stamp, it’s the end of the year, I like to write this stuff and people need to know; besides it helps me review.

In doing this annual epistle I discovered that too often I have measured our life by the absence of catastrophe; probably because so much of our last few years have been defined by Marty’s illness. For too many years it seemed we spent an inordinate amount of our time and energy dealing with medical issues, it felt like we were always at a hospital or at a doctor’s office or waiting for the next calamity to put us in a hospital. A true confession, not long after we came home after Marty’s 2^nd stroke I really thought everything would be great if we could limit our hospital stays to once a quarter. Things change, things get better.

I know life should not be measured by bad events, even if you are simply celebrating the absence of them. Life should be measured by the good times and the love you experience. The reality is when you have been beset by constant calamities you do have to celebrate a little down time, some non-events. By all accounts, by both the absence of the bad and the presence of the good, as I reflect and foist that reflection on others, we have experienced a remarkable year.

Marty has been well, in fact, for our world, Marty has been better than well, she’s been great. She only went to the hospital one time this year, for vertebroplasty. It was planned, it wasn’t overnight, and it helped her back pain. I don’t really count that as a hospital stay, that trip was just a day long tune-up.

Since coming home five years ago we have averaged visiting the emergency room at our preferred hospital enough that they know us by name, about four times a year. We lost our frequent visitor status this year. The only emergency room visit this year was for me. I went early one Sunday morning because of chest pains. I thought I was having a heart attack, it turns out I had the shingles. For the uninitiated the shingles suck big time, for a long time.

When I look back at the year, given Marty’s continued progress, it was a pretty calm, boring, uneventful year. We like calm, boring and uneventful.

Then I remember all of the good things, wonderful events that happened this year. My daughter, our daughter, our baby girl got married in January. It seems forever since I fretted about the whole event and how Marty would handle the inevitable tension and pressure of the wedding. It seems such a long time since we sat at the front of our church and saw Erin marry Lyle and I discovered all of my worrying was for naught as Marty was perfect, as was the wedding. I discovered I could actually help with a wedding and with the proper amount of courage Marty and I could still dance.

Then there are the babies, the grand-babies, two brand spanking new perfectly beautiful baby girls; Lily Jewell and Emma Elizabeth. They are the perfect bookends to the auburn haired first grandchild, Noah.

There is nothing in the world better than seeing your children have children, seeing your children in the role of parents, seeing your children being good parents, seeing your children suffer as you did with crying babies. Love is wonderful, parental retribution is sublime.

Over these last months we have gone to birthdays, different celebrations and events. We have enjoyed time with our family and have been more active and more integrated into the world around us than we have been in five years. Marty’s overall health made it possible, my ability to break out of our routines helped.

Marty and I decided, together, that we wanted to live, we wanted to participate, that we wanted to measure our life by the good things, not just the bad things. I don’t have the personal discipline to do that all of the time, sometimes I am overcome by the anxiety of waiting for the next shoe to drop, but I’m getting better at finding the right things to use to gauge our lives.

So, the Christmas letter; it makes some people gag, I know. It is welcome by others who really want to know what’s happening in our lives, I personally love to read them and see the pictures. For those of you who want a summary: not much bad, a whole lotta good, Marty continues as does Marty’s Husband.

It Snowed at Penderies

2011-12-04T15:23:00.000-06:00

It was Christmas 1994. We were in a small village in the Sangre de Cristo Mountains of New Mexico with Marty’s family. Her parents had a wonderful home there that often served as respite from the Texas heat and flat geography. This Christmas, in Penderies, there was snow on the ground and it was ice cold.

I remember the crisp, clean cold; I remember the marvelous house in the mountains with the huge balcony overlooking a deep, long valley. I remember being with Marty’s parents, I remember being with Marty’s brother and his family, I remember our family. I remember an almost impossibly idyllic Christmas with family and the small mountain community of full time and part time residents. I wish I could remember the details.

Our kids were barely or not quiet teenagers, a wonderful, horrible age. We made them pay homage to our music, Ann Murray, John Denver, Linda Ronstadt and Peter, Paul and Mary during the 13 hour drive from the flatlands of Waco Texas. Our son complained and pouted about the aural assault but we just played it and Marty intentionally turned the music loud enough to penetrate his earphones.

When we got there we skied, we talked, we played games, we ate, we played in the snow and we rode thin plastic sleds down some of the steep snow covered dirt roads and trails. It was pristine; it smelled of fires burning pine logs, ice and clear air. You could hear the crows; you could see the squirrels chasing their tails and you could feel the ice crystals in the air.

Marty and I loved being in the mountains even when the thin air made it hard to climb stairs or walk very fast. It was far away from the flat semi arid land of Texas, it was away from work, from reality and our family fit into the environment like a comfortable pair of slippers.

Being with her family, who really were a lot of fun, watching her then 65 year old father riding a three feet long sled made of purple plastic down a steep grade covered with snow and piling into a snow bank, was a great time in a life of great times.

That Christmas Eve in Penderies Village was one of those seminal moments you carry with you your whole life.

This small New Mexico village has a small log non-denominational chapel, yes, a log chapel, for the residents. It is rustic and tiny with only about eight pews in it and a very small chancel area. The heat was spare and there was no electricity. I remember the cold, the kerosene lanterns casting a slight, pale, shadowy light along the walls of the chapel.

Marty always loved Christmas Eve candle light services at our church and on the odd years we weren’t home she missed that fellowship, she missed the carols, the homily, the singing of “Oh Holy Night”. On this Christmas Eve we were 8,000 feet above and 700 miles from that church. She had long ago planned to bring a little Presbyterian fellowship to the little chapel in the mountains.

Marty lifted an order of worship for Christmas Eve from our church and adapted it to a short, small service. She recruited, i.e. assigned, all of us, all of her family, to roles in the service. She brought a key board, she made sure we could use the chapel, she got word out to the residents of the village and she led us in our own Christmas Eve service.

We read scripture, we read prayers, we led prayers, and we sang songs, with family, with strangers in a small chapel in the mountains. Marty, me, our children, Marty’s parents, Marty’s brother and his wife and their children, we all read, we all participated, we all worshiped, led worship and recognized Christmas in a way I had never experienced.

I don’t remember exactly how I felt as I sat in that chapel, as we all sat with each other and a small room full of complete strangers. I know I was probably too distracted to enjoy the full impact of the service and how memorable and touching the service would be.

As the service ended and as we slowly left I took Marty’s mother’s hand and arm and helped her walk down the steep wooden icy steps of the chapel. She was wearing a long, full length, over stuffed parka holding it tight against the cold mountain air. She didn’t say much but I knew she filled with pride and love over what she had just seen her little family do in front of God and everyone else in Penderies Village.

We didn’t know it but she was one day away from the emergency room, we were one day away from Marty and I beginning to see our own future, we were one day away from breaking the aura of that special night.

Christmas day was peaceful. Christmas night Marty, her father and I drove her mother Jean, into the small Las Vegas, New Mexico hospital. Jean was dizzy, sick to her stomach and having a hard time getting her breath. The mountain air was taking a physical toll on Jean.

Marty and I sat in the emergency room waiting area completely unaccustomed to the idea of the hospital emergency room. We didn’t know, we couldn’t know, that our future held many nights sitting in emergency rooms waiting to find out the fate of people we loved.

Jean was okay that night, she simply needed supplemental oxygen, but it was really a clear early warning that we were on the cusp of dealing with her overall frailty. The trip to the hospital, her illness abruptly pulled the curtain closed on a sweet, gentle holiday, a Christmas I wish I could remember better than I do, a Christmas I wish Marty could help me connect to even though it was years ago.

I wish I could really feel, both tactilely and emotionally, all of the details of that Eve, of that entire holiday. I wish I could remember how it felt to have Marty sitting next to me, how Marty felt, what it really looked like as our family sat together, worshiped together, prayed together, and lived in those precious moments together. I wish I knew then how important it was to feel, to grasp and truly remember each of those moments.

I remember the big feelings, I long for the details. I didn’t think I would have to always keep the details because I had Marty to do that, I had Marty to full embrace and remember the moment. Life changes, hopefully we learn to capture, engage and caress the moment. I try harder now.

Hummin' for Jesus

2011-11-23T20:07:00.000-06:00

Our minister stands at the front of the sanctuary every Sunday. He’s a tall man, thin, graying, in love with his work. He reaches into the water of the baptismal font, pulls hands dripping with water up and lets the water flow through his fingers back into the font and says, “Welcome home, children of God.”

For Marty and I, this place, this church, has always been kind of home, a place populated with familiar and friendly faces, a place with recognizable comfortable beauty, a place that more often than not nurtured our souls, a place where we were able to guide and nurture others.

This was where I saw my children grow in spirit and in life. This is where what I thought I knew of life was challenged and evolved. This is where it was safe to think and to be. This is where my children stood in front of our congregation and taught. This is where tears ran down my face as another infant was baptized. This is where my daughter was married and my marriage was restored. It is, in so many ways, home.

Like many of the places we have called home over the years Marty’s wheelchair, her strokes, our age have impacted how often we were able to visit and how much we have been able to reconnect. All too often we have been strangers in this home and the time gone by has brought change.

We no longer sit in the front left of the sanctuary, we always sat in the 2^nd or 3^rd row because we came in through the front door and that’s where the church youth sat and we rode herd on the kids. We no longer know all of the faces in the congregation. We no longer have young charges to sit behind and hush as they passed notes and squirmed and made kid noises; we no longer stand and sing the hymns we know by heart or stand to say the creeds. We no longer sit in total reverent silence as the prayers are read, as the scripture is read, as the sermon is preached. (The whole reverent silence might be overstated just a bit, Marty was never that reverent or silent.)

Today we sit in the back to be as unobtrusive as possible and because the wheel chair ramp is closest to the back. Today there are no young people sitting in front of us, today I sit beside Marty holding the hymnal for her as the congregation stands and sings, today in the quietest parts of the service instead of bowing our head in prayer, Marty hums, “MMM, MMM, MMM.”

I’ve gotten used to the humming; its part of what Marty does when she gets a little anxious, a little bored, a little self conscious. It’s why we go to the movies in the afternoon, it’s why we don’t go to poetry readings (like we would anyway, sorry), it’s why we try and avoid the quiet moments, “MMM, MMM, MMM.”

We sat in the back as Jimmie, our minister, welcomed all of us and Marty hummed. We listened as Jimmie led us through the liturgy and Marty hummed. We listened as the scriptures were read and Marty hummed, we listened as the choir sang an anthem and Marty hummed, we listened to the sermon and Marty hummed, we watched the parade of little children come tumbling down the middle aisle to participate in the miracle that is baptism and Marty hummed.

It tends to make me a little anxious, I really don’t want to offend anyone or distract them from whatever is happening. I hated it for the poor young woman who sat in front of us. At one point in time I gently touched Marty on the knee to get her attention and distract her from the hum, she looked at me and said in her outdoor voice, “What?” She’s not even aware she’s doing it. Great job husband, let’s make it worse and call more attention to ourselves.

I finally just settled into the rhythm of the service, the rhythm of the day, the rhythm of the humming. It was a change in our home, our church, our worship pattern; it was more of what we have become. It was not the quiet, reverent praying, it was humming, it was humming as meditation, it was humming to fill the silence, it was humming as prayer, it was humming for Jesus.

We are an evolving species. That evolution becomes clear and stark in the face of catastrophic events, i.e. strokes. Survival requires not only recognition of this evolution but acceptance; we must embrace the change to survive.

I need to sit in that church and hum along with Marty, after all, people hum when they meditate. I need to let the humming focus me on the prayer, on the scripture, on the song, on the sermon. I need to hum with Marty and accept this is where we are; I need to very simply hum for Jesus, just as Marty does. Hopefully the people sitting around Marty will find a way to evolve too then we call all hum for God.

I like going to our church. Marty likes seeing her friends there, we love our minister and he has helped both of us shape our world view and helped us cope with our journey. Going requires acceptance, going requires effort to break from the inertia of not going, going is being back home with all of the other children of God. I like being home.

Dancing at our Our Daughter's Wedding

2011-11-11T15:41:00.002-06:00

I have never been a graceful man. I always wanted to be, I have always wanted to move smoothly and nimbly with the grace of a well honed athlete. Instead I tend to move with the grace and skill of a pack mule, strong and steady, not graceful.

When I was in the seventh grade everyone played, or tried to play all of the organized sports. I played football and I really wanted to play basketball. I wanted to move quickly and effortlessly to a spot, stop and spring up like a gazelle, shot the basketball and listen for the sound the leather makes as the ball drops almost silently through the nylon net. I played a grand total to 60 seconds that entire year and in those scintillating 60 seconds I got two fouls. The coaches encouraged me to focus on football.

As I got even older and more appreciative of physical grace I wanted to be able to dance. I wanted to take a woman in my arms and expertly guide her around a floor in time and rhythm to the music without fouling other dancers. I had the rhythm, or so I thought, I just didn’t have any finesse; it was a lot like my 60 second basketball career, but I forgot all of that, because somewhere in my soul lay the spirit of Gene Kelly.

I danced, I liked dancing, my dancing was mostly unfortunate. I could box step with the mothers at the country club, I could bear hug and grind at the local youth hang out, The Happening, as garage bands played the Beatles. I could move back and forth to the beat of the music, but there was no grace to any of this movement.

When Marty and I got married we didn’t do a big reception and dance after the wedding so we were spared the traditional bride and groom dance. I’m not sure when we first danced together but I suspect it was like all of the other times, I wasn’t skilled at leading, she wasn’t a follower. Dancing without a good leader is like driving bumper cars; it can be kind of exciting but the collisions can leave a mark.

Somewhere along the slog of life I two-stepped, waltzed and line danced, it is Texas after all. Marty and I went to dances when forced to and I mostly avoided dancing with other women for fear I would cause a major dance floor crash. Marty and I struggled for control on the dance floor, she really seemed to do better with more skilled dancers she trusted, I pined for a smooth step.

By the time our son married Marty and I had mostly given up dancing. We just didn’t do any boot scottin’ or anything like that. It didn’t mean I didn’t want to be able to dance; I harbored a desire to take lessons, to really learn how to lead, to learn how to glide and move smoothly to the music. Marty would have nothing to do with it.

So we didn’t dance, we didn’t find a way to dance until it was almost too late.

This past January, five years to the month after Marty’s second stroke, our baby girl got married. Baby girl Erin and I did the father daughter dance to John Denver’s “Annie’s Song”. We twirled and whirled and to my knowledge her feet came out of the event relatively unscathed. They don’t call me twinkle toes for nothing; actually no one calls me twinkle toes.

I watched as Erin danced with her new husband Lyle, I watched as my son and daughter-in-law danced, I watched as the father and mother of the groom danced, I watched as friends danced, as children danced, as my father danced, I watched and even danced once with the mother of the groom.

Marty sat in her chair and I can’t say I know what she thought of the dancing, or even if she thought of the dancing. She stayed up late and watched as people hugged as they swayed as they slid across the dance floor to the different strains of music.

I wish I could remember what the song was that got my attention. It was something familiar, it was something slow, it was a song that made me remember, remember dancing with Marty a long time ago. I was sitting with her and pulled her around to me and I asked her if she wanted to dance.

Marty does not like to call attention to her new self at all. She is very self conscious about her post stroke state, she doesn’t want people looking at her, staring at her or watching her at all. I’m not sure if it was the wedding, all of the dancing, or the song, but she said, “Yes, take me out there.”

So out there we went, in front of God and everyone else, I spun her wheelchair around, put my hands on the front of her chair and started shuffling and pushing in time with the music. I don’t remember who else, or if there was anyone else on the floor, but there we were, gliding across the floor, me finally getting to lead.

We made it through the whole song. We danced, we laughed, we even managed to get cheek to cheek a couple of times. It was good, it was meaningful, it was almost normal in a very abnormal time. Marty smiled and just for a minute all of the self-consciousness melted away and we both simply enjoyed the moment, a moment together. I don’t know if Marty and I will ever dance like that again.

Maybe, in its base form dancing is really nothing more than the coordinated movement between two people. Maybe to dance one doesn’t have to waltz lightly on your feet or be as graceful as the guys on “Dancing with the Stars”. If that’s the case Marty and I dance beautifully every day, as I help her move from chair to chair, as I slide the catheter down her throat, or as I roll her back and forth to help her get dressed.

I know I will never be graceful. I will never glide across a basketball court stopping just short, jumping and shooting the basketball. I will never smoothly guide my partner dipping and swaying on the dance floor feet barely touching the floor. My body didn’t work that way when I was young, it damn sure doesn’t work that way with a little more age. That’s okay, Marty and I will keep dancing in our own way and I don’t have to be particularly nimble to do it and I do get to lead, as long as I lead like Marty tells me.

Strokes Suck -- Forever

2011-11-04T19:56:00.000-05:00

It doesn’t happen very often, but occasionally I look around, I think of Marty’s brokenness, I focus on what was and what is now and I get angry, I get pissed, I feel completely imprisoned by my life and I scream in my mind, “What the hell am I doing and how did I get here?”

I’m not proud of these moments, these feelings, but I can’t, I won’t deny them, they are very real, serious feelings that at infrequent times define me. The anger, the feelings of profound frustration are not focused on anyone, not me, not Marty, it is all about the disease, it is all about the results of the disease, it is all about the loss, it is all about the missed moments of my life with my wife.

Marty and I are at a stage in our life where we should be able to enjoy and reap the fruits of our years of labor and saving. We have the financial means to do things, to enjoy things, to see things, to dance on the deck of ship, to drink wine in a valley, to see the masters at the Louvre, to wade in the ocean with our children and grandchildren. The disease makes all of those things, those dreams, stay just that, dreams of the past.

The losses often seem endless and the barriers to do the simplest things seem insurmountable. Almost everything is exponentially harder to do; getting up and going to church, having dinner out at a favorite restaurant, or going to visit friends is often so hard as to deter doing any of it. Doing anything quickly or spontaneously just doesn’t happen, what we do requires advance plotting and planning to care for Marty’s needs. You can’t just go anywhere because of the wheelchair or Marty’s limited capabilities. What we do, when we do it is always constricted by this damn disease.

Then there is the isolation, the feeling of being alone in a fortress. As someone who is comfortable with solitude I never thought I would feel isolated, alone. I hate the feeling of being alone and it’s an unfortunate but a real part of caring for someone with a long-term, debilitating disease. It just happens, the disease, the recovery from the disease, the caring for the sick becomes the obsession, focus and the driver of your life and you use the disease to help build a wall around your life to create a fortress. There’s not enough bandwidth to deal with the outside world and what lies ahead.

How about what’s ahead, what the future holds? I try and stay away from the future, it’s always too overwhelming. The reality is that sooner or later the repercussions of the strokes will overwhelm Marty’s systems and take her away from me, take away my obsession. Being alone, aging alone is part of the future I avoid. Its part of what the anger is about, it’s the worst part of these strokes, the only way to be truly free of this disease, the only way for me to erase the disability, the only way for me to live a different life is for the love of my life, my wife, to be done. Then I get to be old and completely alone, so yes, it pisses me off.

Then, like the cherry on the sundae, I hit myself with a little guilt for recognizing and railing about the curses of our lives. It’s not right to be angry at loss when you have so much good in your life, it’s ungrateful, it’s self-pity, it’s whiney, it’s ignoring blessings, it’s unbecoming, uncool, and pathetic. One shouldn’t just focus on the loss, one should only focus on what is good, that’s what the strong and stable do, they persevere, they march through the rain, smiling.

I swear I know how fortunate I am to have had the time to become reacquainted with Marty. I swear I understand the blessings of our marriage and how Marty has made me a better man, a better human. I swear I know we are lucky to be able to live and carry on and see our grandchildren born. I know we are blessed to have such a wonderful supporting family and cast of characters around us. I got that, I really do, I still get mad as hell at the disease and its cost on Marty and me.

I do that a lot, recognizing our blessings, but occasionally, when I look around and see the couple walking down the sidewalk, or when I see a man and woman walk effortlessly into a diner, or when I see a couple gliding across a dance floor I mourn what was and will never be again. Then, because it’s what we all do, because it’s how humans do it, I move on and say thank you God for keeping her here with me.

Forgiving Everything, All the Time

2011-10-31T19:28:00.000-05:00

I do it every day, several times a day, it’s one of the dances Marty and I do.

I reach under both of her arms, get a secure hold, make sure she is anchored with her right leg on the floor and use my prodigious frame to pull her to a standing position. Every day when I do it I manage to move her arm, her leg, her back in such a way she says, “Ouch.”

As I lead this dance I then ask, “What’s wrong?”

Marty then names the pain, names the location of the pain….”You hurt my leg,” “You hurt my arm.”

I say, “I’m sorry.”

She says, “That’s okay.” Every time, she says, that’s okay, every time she immediately forgives; grants grace and forgets the infraction, just like that, just that simple.

It never fails as I push Marty in her wheel chair down the hall and make the left turn into the kitchen I bang one of her legs into the wall. If not that wall then I find something else like a door, or the facing of the door or something else immovable.

It’s the same dance. Marty says, “Ouch,” and then names the pain.

I say I’m sorry, she says, every time, all of the time, “That’s okay,” instant grace, instant forgiveness.

To know Marty’s past is to understand this forgiving and forgetting nature is not natural for her. Before the strokes she did not suffer fools gladly or any other way, before the strokes if she suffered a slight she let you know she suffered the slight and she would remind you five years later about the slight. She didn’t necessarily hold a grudge; she gently massaged and nurtured it until it was time to reap the benefits.

That’s not the new normal. The new Marty lets it all go and has the grace and love to accept things, accept her life in a way that is really remarkable. It would be easy for her to complain, to turn to resentment, to live her life caged by anger at the tragedy of her life. She chooses to live otherwise.

She says doesn’t really have a choice. She says it’s not a matter of choosing, it’s simply a matter of living with what is. What she says is that being angry; being difficult would not make her life better or easier in any way. I say she makes a choice every day to life with acceptance and grace, I say she chooses to live with forgiveness every time I run her into a wall.

We don’t get to choose everything. The blessings and curses of our lives sometimes just happen, not based on what we did or didn’t do, they just happen, regardless of what we do. Our choice comes in how we adapt, how we accept, how we live in the life given each of us.

I marvel everyday at the way Marty lives her changed life and the simple grace that she embodies. You see it every day as she accepts what is her life today, as she is rolled from side to side to get dressed, as she is picked up and moved around to her wheel chair, as she takes what pills are provided, as she eats whatever is place before her, as she simply lives without complaint, remorse or self-pity.

Knowing Marty as I do, knowing and understanding who she was before, her ability to adapt and accept is nothing short of remarkable, her acceptance of my help is nothing short of miraculous. Caring for Marty with her willingness to simply say every day, every time, “That’s okay,” makes life a lot better for all of us.

Who the Hell Am I?

2011-10-18T17:30:00.000-05:00

I am a west Texas born and bred male, raised on football, baseball, guns, church and hard work. In my mind men were tough, quiet, hard and loyal, we were not taught to be sensitive, caring or nurturing, we were the hard men meant to provide safety and comfort.

I played football, I played baseball, I hunted, I worked in cotton fields, in the oil fields and in construction. I grew up believing I was the quintessential Texas male, refusing to express fear, doubt or leave the toilet seat in the correct position. Feelings of softness, gentleness, empathy, or nurturing were not part of what I thought of as masculine, feelings in general were not part of who I wanted be, caring for the sick was not the work of a man, unless of course you were a doctor.

Okay, I admit I had some soft spots. I fell in love too easily and too often and I cried every time I heard the song, “Rudolph the Red Nosed Reindeer”. No one would play with him and I felt bad for him, it’s hard being an empathetic male.

In my first and only real career I worked in the business end of the electric utility business for 26 years. I was great as an independent employee working with customers, I was really very good as a supervisor of people, I was probably less than okay as a captain of industry.

My next to last job with my company was as that captain of industry, a pretty big dog on a very big ship, trying to guide the ship through the turbulent seas of change and greed. I was always pretty good at inspiring people, at painting a reasonable vision, and understanding an employee’s perspective. I was never very good at giving bad news, meting out discipline and telling truth to power, not a good recipe for success as a captain of industry.

I successfully guided my various organizations through all of the iterations of the same company and massive changes that has been a significant part of the business climate for the last two decades. During one of my last performance evaluations my boss told me was that I needed to harder and meaner and less empathetic, more of the classic business guy. He thought I needed to be freer with criticism, be more hardnosed and more cut throat.

I tried that, I really did. I tried to move past the nurturing part of my DNA, that subjective empathetic part of my personality. I was a flop. Invariably when I tried to be a hard ass I was not just an ass, I was also a jerk. Marty tried to tell me, she tried to tell me that I wasn’t being myself. I can still hear her telling me to be to be who you are, who you have been, not what they want you to be.

When I left my job in my mind’s eye I still wanted to see myself as a big bad businessman who did business in a hard but fair manner, who treated employees with the bare amount of dignity and drove them to excel. I still saw myself as a man’s man who could be stern, who had high expectations of everyone, including myself. Nurturing, taking care of my woman was not on the top of my mind.

She tried to tell me, over and over again she tried to get me to recognize myself, then she got sick. Not just a little sick but catastrophically, cataclysmically, death bed kind of sick; the kind of sick that changes the lives around you, the kind of illness that requires care, that requires nurturing, that requires all day, every day care giving by someone who cares.

For a year I pushed back, I couldn’t do this, it wasn’t my calling, it was against my very nature, it was not me. I was plagued with the anxiety of second guessing and doubt, I was captured by what I thought I should be and more importantly what I thought I wasn’t. The days of even wanting to be that business man of old, that captain of industry, became lost in the urgency of our new normal life. My life, my self, wasn’t so much changed as it was discovered by the pressure of reality.

Somewhere along our journey, with Marty’s help, I found the guy who cried about Rudolph, the guy who instinctively cared that the other reindeer excluded him. I discovered that it was okay to be afraid, that it was okay to be tender, that it was honorable to care for those who could no longer care for themselves.

Marty taught me, she showed me who I was, who I could be, what my true calling was. I chafed against it, I fought against it, but it was what I was meant to do. Through Marty’s illness, what I was meant to be, found me. Could I be nurturing, could I conquer my self-doubts for just anyone? I have no idea, I don’t have to know that, I only know that caring for Marty, watching over her is what I was supposed to do, it is what my life was supposed to be.

I always thought that the first sign of maturity was when you realized there was more stuff to know than what you already knew. I have since come to realize that understanding all that you don’t know is just part of it, somehow you have to start to know who you really are and start living that life, not the one you thought you were or who you wanted to be. Sometimes we discover somebody completely new.

A Circle of Caregivers

2011-10-03T20:38:00.000-05:00

I sat in the parlor of our church listening and talking, mostly listening to the stories of the other family caregivers. We had gathered together to talk, to listen, to think, to find ways to help those who were providing care for loved ones.

There were women who had seen fathers and husbands through the worst of dementia, who had cared for them as they slowly passed. There was a wife and daughter of a husband and father who had moved to a care facility. There was the wife who was just really starting on her care giving journey as her husband was slowly but surely needing more and more help. There was the niece who had willingly taken on the job of caring for her aunt and there was me.

Everyone had unique stories, unique but the same in so many ways. As I listened to them talk of the fears, the worries, the fatigue it all sounded so familiar, spoken by different people at different stages of life, all in the same storm.

We talked about health care, embarrassment, ignorance, unknowns, fear, patience, and love. Each of these people, as they spoke, as the tears came, did not have to profess their love for their spouse, father or aunt, it was assumed, the love, the respect, the loyalty was lived through their dedication and actions.

The stories were poignant, especially as some in the room talked of coming to the decision they were no longer able to care for their loved one alone, at home. Those painful decisions, to move their husbands to a care facility, were largely made out of the need for survival for both the caregiver and their charge. You could tell those decisions were painful; the women felt they had not made the best decision, but the only decision remaining.

That’s the real conundrum of caring for people with long term, descending ailments, there are no good decisions, there are no right decisions, and inevitably you end up making the only decisions and those decisions invariably kind of suck. Making those kinds of life altering decisions is one of the most stressful, heart wrenching parts of care giving.

Then we talked about the loneliness. Maybe lonely isn’t the right word, it’s really more of a feeling of isolation from the normal ebb and flow of life. When you work, when you fully participate in the life flowing in the outside world, you are part of the world, part of the community, experiencing the rhythm of life. When your life revolves just around what’s inside your home, what’s inside a nursing facility you don’t experience life in a normal way, you are set aside, you are isolated.

So many of my own relationships revolved around work and Marty was the social secretary in our house, she was the one in charge of most of our outside experiences. All of that went away when I quit working and Marty had the strokes. I have been beached, out of the ebb and flow.

After the strokes, after we came home for the last time, everything became about Marty, about her recovery, about what happened behind the walls of our house. The walls then become something of a fortress, you forget about what’s outside, I only saw the outside through the perspective of how it will affect the person I was most responsible for, Marty.

Remarkably I don’t resent any of that. I’m as surprised by that as anyone, I’m not the self-sacrificing type. I’m selfishly doing what I was called to do; I’m doing, regardless of the repercussions, the most decent thing I’ve ever done and frankly I’m proud of that.

I think everyone in the room that evening would agree with that. From the daughter to the aunt to the spouses, I suspect they all confront the pain of their families’ illness every day. Those that have lost people, still deal with the ramifications of those tragedies every day of their lives as they try to re-establish themselves in that rhythm of outside life.

The talk helps; the communion of these souls satisfies a part of my being. There are no answers to most of the issues, most of the issues are part of the more unseemly part of life that some of us face too early in our lives, some face for too long, same face too often.

I hope we bring this group back together in the future, not to look for answers, not to bitch or wax nostalgic, but to simply share the lives we have in common. That’s what so many living more normal lives do every day.

Names, Names and More Names

2011-09-29T21:08:00.001-05:00

Names. Marty Jean, daughter of Ethel Jean and Arty Jewell, you can see where they found her name. Larry Carlisle, son of Bettye Lou and Larry Carlisle Sr., I am a junior; it’s part of my heritage. My nickname, Ginger, is a part of our family lore. Our names don’t define us, but they are gifts, of a sort, for our past.

The names we carry are signs of where we came from, where we started. Marty never particularly liked the name Jean, her mother went by Jean because she didn’t like the name Ethel and I was married to Marty for 20 years before I knew Arty’s middle name was Jewell, he truly wasn’t a Jewell kind of guy.

Marty and I worked hard to provide our children names they would be proud of and wouldn’t scar them in some way. It’s my memory that I named our children, I’m betting Marty remembers differently, but since I’m the scribe, I named our children and named them well.

Matthew McCauley is a great, strong name which has fallen to the derivative Matt, but it really fits my son, he is Matt. The McCauley is a family name, people who raised Marty’s maternal grandfather and at the time we wanted to honor Marty’s family but Arty and Jewell just didn’t seem to work in 1979.

Our daughter’s name is Erin Elaine mostly because I liked the name Erin, it’s a Celtic name and we aren’t Celts, but I liked the name anyway. Elaine came about because it was my sister’s middle name….sorry Martha, not really, it just seemed to fit with Erin and Erin Elaine rolled trippingly off the tongue.

I tried to exert what patriarchal influence I thought I might have when grandchildren started to appear. I strongly lobbied for a good strong Texas name that would reflect the powerful lineage of both families, a Larry on our side and a Robert on the mother’s side led to the logical name, Larry Bob. Larry Bob died a long death, and morphed into Noah Robert which is probably a better reflection of the budding train engineer that is Noah, but I’m going to call him Noah Bob and I don’t care what they say.

When daughter Erin came to be with child they decided they didn’t want to know the sex prior to birth, it was to be a surprise, much like the whole being with child thing. Because husband Lyle’s family has an L thing going with names and because Erin had put dibs on Luke for a child’s name since she was 12 the boys name was to be Luke something or other, we didn’t get to the something or other because we got a Lily, a perfect little baby girl. In fact, we got a Lily Jewell and got to use Marty’s father’s name in a very appropriate fashion and I get to sing “Hi Lily, Hi Lily, Hi Lo” endlessly when I hold Lily Jewell.

Now we have a new one on the way, a new baby girl. My son and his wife are keeping names close to their respective vests. Sarah, Noah Bob’s mother, keeps saying she just doesn’t feel any of the names proffered. I keep reminding her of the plethora of strong family names we have, Ethel, Beatrice, Lula, a Bettye Lou, Ebba Bird or Grace, all kinds of really cool names. I’ve offered Sally Jo but that was a no go. I suspect they will know her and her name when she comes next month.

The semi-remarkable thing about all of these names is that Marty knows them, remembers them, recites them. All along she has been remarkably good at remembering names and faces of people she knew before the strokes, but she struggles with names of people she has since come to know.

Marty trusts our three amazing caregivers, Nikkie, Renae and Erica, completely. She spends hour upon hour with them, listening, talking and getting to know them. She knows who they are, she knows what they do for her, she struggles with their names. If you say their name, recognition, if you ask what their names are, the recognition is there, but the names are not close to the tongue, her brain knows who they are; getting it to the mouth doesn’t work.

Her grandchildren however, she knows and remembers their names. She can’t get down and play with them on the floor, she can’t really interact to the degree she would like, but she is absolutely enchanted with both Noah Bob and Lily Jewell. She knows she is attached, she knows they are hers; she knows they are a part of her life. Marty knows their history and their names are in forever in her brain and on her tongue because they are a part of her.

I like my name; I like the fact that it ties me to my family and is a part of my past. I really like the fact that Marty remembers her grand kid's names, I really like the fact that she is still here to see and appreciate her children passing on names and passing on her family's past. Mostly, as always I really like the fact that she is still here, with me.