Surrender? Don't Think So

When we left St. Catherine’s to come home in June of 2006 it felt like surrender, it felt like we were leaving too soon with too much still to learn and to do.

We had been at St. Catherine’s, a sub acute care and rehab center, for a total of four months and we had spent a turbulent six weeks at Pate rehab in Dallas.   All in all Marty had not seen the inside of our house for six months.  

As I sat in the social worker’s office listening and thinking about our options, trying to come to grips with our new reality, I finally just gave in to what I saw as inevitable and I said, “It’s time to go home.”

I never would have thought it but going home felt like surrender, leaving rehab without accomplishing some or really any of our recovery goals felt like total failure.  We had spent months trying to find answers and see some real improvement in Marty’s physical and cognitive abilities.  I felt like we had made very little progress and as I said those words, “let’s go home”, it felt like acquiescence to the strokes, it felt like I was quitting on Marty.

Before the strokes Marty was a musician, a teacher, a therapist, a mentor to young women, a house painter, a detailed but painfully slow wall paperer and the financial manager for our house.  She presented seminal papers at conventions and helped revitalize a youth program at our church, she helped our oldest put together a remote powered, Paper Mache shark and guided our youngest through the travails of adolescence.  

Before the strokes Marty managed to get a couple of degrees, one a doctorate, while raising two very successful children and supporting a husband in a job that was somewhat nomadic.  She had done big stuff and seen big stuff, she was accomplished.

The strokes and the recovery from the assault of the strokes made everything she had done seem pretty small.   As we walked out of St. Catherine’s for the last time we were faced with giving up on rehab, we were being forced to take unacceptable losses, we were going home to learn to live and accept.

Over the years my accomplished wife has taught me a lot of stuff, over our years together she has helped me grow into something better.  How she has lived her new life, what she has taught me by her gracious acceptance of that new life, has been nothing short of inspiring and maybe her biggest achievement.  Marty has taught me that what I saw as surrender that June was really just the beginnings of acceptance without surrender.

Marty, my wounded wife, taught me.  She quietly led us both to acceptance, to accept the disability, to accept the new life, to accept the massive changes brought on by the strokes, to accept it all, but to never surrender to any of it. 

She has continued to fight for every little piece of improvement, every tiny memory, every number, every address, every name.  She has very simply and quietly fought for improvement.  Marty has embraced the rehab adage, “I’m better today than I was yesterday, I will be better tomorrow than I am today.” 

She has lived the credo, acceptance without surrender.

Marty has done all of this quietly, without complaining and with all of the dignity one can have when your body and parts of your mind are so broken by a disease.  She has accepted with dignity and grace a body that does not necessarily lend itself to either.  In her living she has taught everyone who knows her about grace and acceptance.

Marty was always stubborn, dogmatic, determined in everything she faced, in everything she wanted to do.  She wasn’t ever really compliant or graceful in her life.  The strokes forced us both to find a way to accept a new life.  

She was not forced to live her life without complaint, she just does.  She was not forced to continue to seek improvement, she just does.  She was not forced to live with grace and dignity, she was not forced to fight surrender she just does every day.   

She embodies acceptance without surrender.

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

 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.