Monday, May 13, 2013

She's Not My Mother

It was a new clinic for us but we are practiced enough in the medical arts to simply assume our normal positions.  Marty was in the dental chair looking around the office, surveying the exam room looking at the doctor’s diplomas, checking his credentials.  I was sitting in the chairs at the wall.  I was behind the nurse answering her questions, trying to put a face on Marty.

The nurse, focused on her computer screen, asking questions, looked up for just a moment and asked, “Now is she your mother?”

It was not the first time this question had been asked.  With my reading glasses on the end of my nose I turned, looked at the nurse over the top of my glasses and said, “No, I appreciate the fact that you think I look 30 but I’m her husband, have been for 36 years.”

The nurse looked up, looked at me, looked at Marty, “Oh.”

Yeah.  I get it.  When you look at Marty’s chart, when you look at her meds, when you look at her medical history it reads like someone who is 80, not a 58 year old woman.  I get it, when you look at your computer the patient doesn’t necessarily match the real person.

Trust me on this, I don’t look young enough to be Marty’s son, our son does.  And trust me on this; for a woman who has been beat up by not one but two cerebrovascular accidents, Marty doesn’t look 80, given her history she looks great.  Sometimes people just don’t look. 

It really doesn’t surprise me…..too much.  These people, people in the health care business, men and women dedicated to the healing arts, see hundreds of people a month depending on where they work.  Those people, those good people, get a routine; they get into a work rhythm and sometimes lose sight of the person sitting in the room with them.  It’s hard for them to understand this might be your first time as a patient.  

Personally I’m a rhythm kind of guy, I really get it.  Routine works and the questions asked are important questions.  I want them to know Marty’s history; I want them to know and to notate all of her medicines and everything she is allergic to, that stuff is life sustaining information.  Data is good. 

The good folks get the data and then they start mentally collating that data and how that pertains to why the patient is there.  That collation then gets them to a norm, it gets them to something they deal with multiple times in a given day and they make reasonable assumptions based on that data.  In Marty’s case, they assume she is an older woman with a litany of health issues.

She’s not; she’s too young to have endured what she has endured.  I know it’s hard, when you see a lot of people, when you repeat the same procedures day after day, to see past the data, to look up from the computer screen.  The big bright eye of the computer monitor pulls the focus away from the human in the room.    

It’s not just in health care.  It happens in any environment where you deal with repetition and a lot of people, the human gets shoved aside and only the patient or the customer remains.  It happens everywhere, but, when that it happens at Subway they are just making you a sandwich.  That’s not near as scary as oral surgery.

There are a lot of nurses and doctors and therapists and x-ray techs that somehow avoid that sort of dehumanizing trap.  They are the real practitioners of health care.  

We are really fortunate with all of Marty’s doctors.  They run good ships.  They know Marty; they see Marty as more than a brittle, complicated patient.  They see her as the person, the human she is.  The nurses and the office staff at the office of Great and Wise greet Marty, hug her and talk to her and see her as someone special.  To them she is famous, she is Ms Marty and they care for her and see her as an individual.  

Some of these folks have known Marty for years, some knew her before the strokes, most know her only as she is today.  We have loved and lost several good nurses and office folks at that office.  But the new folks treat Marty as a person too,  they have taken their lead from Great and Wise himself and he insists on having patient care be care for a person, a fellow traveler, not just another patient.

I know it’s hard, I know it requires extra work, extra effort to break out of the routine.  It means you have to look up and truly look at the people sitting in the chairs in your room and that sometimes takes time, it means you have to slow down just a bit.  

I know, I understand it’s hard when to look at so much stuff, so much critical data and not be entranced by that data.  I know gathering and coalescing the data sucks focus from people.  But you know, some day that person, that patient who has never been in the office before, might be you, , some day it will be a loved one in that chair and I guarantee you will want whoever is caring for them to remember that they are not one of many, they are unique, they are people.  

In the grand scheme of things, it wasn’t a big deal.  Marty wasn’t paying attention and she is not easily offended.  The nurse doing our intake was pleasant, competent, professional and kind.  She wasn’t the first to ask the question, she won’t be the last.  I just want them to be sure and look at us before they ask any questions.

Saturday, May 4, 2013

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.