Monday, February 27, 2012

The Hospital Routine

It says something about your life’s circumstances when you consider a hospital stay routine.  Two years ago Marty went to the hospital for what was, to us, a fairly routine visit to get a dose of IV antibiotics for a urinary tract infection.  Routine, maybe not so much.

We checked into dear old Providence Hospital on Sunday afternoon thanks to the good grace of one Great and Wise.  He had been following the requisite samples to discover said infection and the appropriate antibiotics.  We had to go to the hospital because we needed IV antibiotics and the good doctor is a good enough man to meet at the hospital on his day off to check us in after church.

It was to be routine, three or four days of good drugs and home we would go, Marty peeing pain free.
It had been several months since Marty had last been in the hospital for an infection, but we had been there enough to establish a routine.  We knew what to bring, what Marty would need, what the hospital needed and we checked in, moved to Marty’s room and I started my spiel with the charge nurse about who she was, why we were there, what her medicines were and that someone would be with her all of the time.  They remembered us and knew we were fairly low maintenance for patients, it was routine.

As per routine, Nikkie, Marty’s caregiver came in about 6 p.m. to spend the night with her.  She set herself up and I stayed until after Marty’s supper and then went home to eat supper, feed the dog and get some sleep before returning the next morning before Great and Wise’s early morning rounds.

I had just settled in to sleep when the ringing phone jerked me from the tentative first steps of sleep.   The telephone ringing at midnight when your wife is in the hospital is never, ever good and I immediately was full on awake and on point.  Nikkie was on the phone and she told me, haltingly, tensely, slowly that Marty had just had a major seizure and wasn’t responding to them.  I didn’t ask any more questions as I was already putting my legs in my jeans and walking to the car.

Waco is not big and we live close to the hospital.  I was standing beside Marty’s bed less than 20 minutes after the phone rang.  Marty was in the bed, with a nasal cannula flowing oxygen to her as she breathing shallow and fast.  He eyes were fixed and not really focusing and as I bent down to get closer to her she didn’t acknowledge me.  She was confused and clearly suffering from the brain turmoil that is the aftermath of a major seizure.

Marty had two other major seizures, both a couple of years before, both related to an asthma medicine.  Seeing them happen is one of the most heart wrenching frightening things I have ever seen.  Even so, we had decided, to the chagrin of her neurologist, to take her off of her seizure medicine because it made her really sleepy and unresponsive and was affecting her blood chemistry.  She had made a lot of cognitive improvements after the seizure meds were discontinued, but, as I stood beside her bed I regretted the decision.

As the clock advanced Marty slowly started to recover awareness as her brain recovered from the neurological shock of the seizure.  She was leaning back in the hospital bed, breathing easier, looking around as we quizzed her with Marty responding in her normal fashion, we seemed to be headed back to routine.  Her only complaint was her right shoulder pain; she said her right arm really hurt.  I thought she must have really strained her bicep.  About 4 a.m. I went home to sleep for a couple of hours.  This routine hospital visit wasn’t.

A long story shortened, a story already written, Marty recovered from the seizure and an EEG did not show on-going seizures.  It took us all day and a call for a Great and Wise intervention and the X-Rays showed Marty had broken her right arm, her good arm, her only arm.  It was a compound fracture of the humerus, just below the shoulder.  The muscles in the right arm had tightened so suddenly and rigidly they had snapped her brittle bone in her strong right arm.

I can remember at the time being inordinately pissed off at God about the whole thing. As a believer, as one who strives to believe in a benevolent, higher power, it felt as if this higher power was pulling the wings off of a fly for sport, taking the good arm from my already damaged wife.  I’m still not quite done with that anger and disappointment.

We decided after much consternation, discussion and soul-searching not to have orthopedic surgery on the arm.  It was just too risky for too little benefit.  I talked to Marty, I talked to Great and Wise, I talked to our children and anyone else who would listen.  Ultimately, I had to make the decision, a decision I am comfortable with two years later, a decision that was excruciating to make at the time because of the symbolic acceptance of Marty’s terminal brokenness, because it clearly showed that the brokenness of Marty’s life could not be repaired.  It was a jolt of reality.

All of that was two years ago.  Two years is a long time in our life, at one point in time I didn’t think Marty would last two years.  In those two years since that routine hospital visit Marty has gained some use of her right arm, she can now feed herself, hold her beloved Diet Coke, and use her arm in other limited ways.  It hurts her if she or I move it wrong, but I still believe, and she agrees, we made the right decision regarding the surgery.

Marty’s neurologist prevailed and she has been on anti-seizure medicine for these past two years.  We have found the right medicine, we administer it at night and she has become accustomed to the side effects.  There have been no seizures since that night two years ago, for which I am eternally grateful, knock on wood.

Today, we are home, feeling fat and happy and rejoicing that Marty hasn’t spent one night in the hospital since that event, two years ago.   I didn’t think that was possible in her life time. There have been no seizures, very few infections and no infections that required IV antibiotics.  

That end of February, first of March hospital stay was the last time Marty has seen the inside a hospital room, except to see her new grand-babies.  Visiting babies beats the hell out of even the most routine of hospital stays. 

Saturday, February 25, 2012

Two is Better

“There are places I remember
All my life though some have changed
Some forever, not for better
Some have gone and some remain”
John Lennon

I went to church the other day, alone.   I don’t like going alone; there are places where alone doesn’t work very well for me, where being alone, feeling alone keeps me from understanding, keeps me from embracing the moments.

I sat with good friends, listened to a good friend preach eloquently and was reminded of the good Marty and I, together had found in that place.  She would have loved talking about Jimmie’s sermon and how he called for us to tear down the barriers of our faith, not erect new ones.

There are places I remember, there are things I do that remind me of our loss, that bring home the absence of my other mind.  Attending our church, soloing with our children and grandchildren, or laying in our bedroom in the silence of a deep dark night, all conjure memories of times past, conversations that stretched my consciousness; moments, good and bad with the one person who has been with me the longest and knows me the best.  

When you have shared  so much of your life with one other person it’s hard not to want to continue sharing, it’s hard not to be in situations and think, “Where’s Marty, she would love this,” “What would she think about this,” or even, “Where’s Marty, she would really hate this.”  That partner, that other person becomes part of your DNA and the catalyst to so many thoughts and ideas. 

I went to Las Vegas last year, alone, thinking it would be great to be away and on my own for a while.  It was great to get away and feel a change in routine and I enjoyed part of it, but I slowly became painfully aware of my own loneness, my own sense of empty.  While I was there I gambled, I watched the people, I rested, but there was no one to share the moments with, no one to hear my snide, smart-ass remarks, no one to retort with that since of familiar family righteousness. 

It’s not just the places.  It’s the actions, it’s the memories of actions past, it’s the feeling that you are doing something you should be sharing with someone else, it’s the understanding that by sharing a moment with someone else it will enrich it for you.  

I have spent so much of my life experiencing life with another that now, when seminal moments present themselves, it’s like seeing them through a cloudy window, and I can’t appreciate the intensity of the colors or the shapes.  I feel like I’m processing the events without using both sides of the brain.  Marty and I weren’t a perfect match, she was the yin to my yang and it made us whole.

It took years and multiple personality inventories administered by my psychologist wife for me to figure out that I really am an extrovert, that I do best processing life with other people.  I wanted to be dark, brooding and thoughtful; I wanted to see myself as careful and circumspect in my mental processing and communication.  What I really am is a person who requires another mind beside him, bouncing off thoughts, comments and ideas.  I think best out loud, I understand best in the company of others, I live better when I appreciate life with someone appreciating moments with me.

Marty and I go to the movies once a week, I love movies, it’s an outing for her, and it’s something we have always done.  We go Wednesdays, early afternoon, it’s positively decadent.  We go then to avoid any crowds in case Marty is humming particularly loud that day.

Marty and I used to talk about what we had just seen while driving home.  I loved her brain, her perspective on the film, her understanding of the nuance.  I miss that conversation, I miss that wit, I miss that to-and-fro banter that challenges my senses.  It’s clear now that she made me smarter because I can’t see the depth of anything without her pushing the conversation.

When I wax on about Marty and I have lost it always feels a bit like a pit party and I always feel compelled to say I know we are blessed.  I always feel a need to reassure everyone that I recognize the grace Marty and I have found as a result of her illness and how fortunate we are to still be able to go to a movie together.

All of that doesn’t change the fact that I feel like I often live my life today with half of a brain, missing that part that challenged me, missing that part that made me smarter and missing the half that helped me see things more clearly.  Recognizing the good fortune of a continued life together doesn’t change the fact that I miss a part of our life that will never be again.  

I can recognize our luck and mourn our fate at the same time; I don’t think that’s self-pity.

Thursday, February 16, 2012


I started writing this blog about three years ago.  The premise was simple, I wanted to keep Marty’s friends and family apprised of her life and our journey.  But, being something of a political junkie, radical moderate and uber-user of the medical community I wanted to inflict my political prejudice on unsuspecting readers from time to time.  

As it turns out most of what has stirred me the most has been the life Marty and I have lived over our years together.  Marty really has driven most of this, it really has been a discovery process, it really has been a learning experience.  I have discovered that my biggest passion has been Marty and learning and understanding life in our new normal.  Rightfully, that passion has dictated the majority of the words.

As much as I love to debate the ebb and flow, the right and wrong, the lunacy of politics, I really haven’t focused much attention there.  With the presidential election season upon us and more and more political fodder being thrown on the television, e-mail and face book I find the siren song of politics calling me; thus the political screed has risen again.

It’s really Dean’s fault.   Dean is one of my oldest friends and is one of the nicest guys I have ever met and I love him like a brother, he is just woefully incorrect about so many things and because he sent me an e-mail the other he got me to thinking, then ranting and that can be dangerous. 
The e-mail was one of those chain things that essentially maligned the idea of being a Democrat and explained why people of that persuasion were, well, stupid ass-holes.  You know the drill, really intellectually deep and meaningful.

When I was a kid playing Little League my parents were at every game to support me.  After one game my Mother was complaining to me about how some of the fans in the stands were hollering for a batter to strike out, not for the pitcher to do well, but for the batter to fail.  It frosted her cookies that instead of cheering for the pitcher these fans focused on the batter, in effect, not hollering for their team to win, but the opposing side to lose.

My goal here is to write about why I am planning on voting for President Obama again, not why I think the other side bites.  I could list all of the reasons a President Romney, Santorum or Gingrich is a frightening thing.  I could point out all of the ways these guys are hypocritical, short sighted and disingenuous and well, a bit creepy.  But I want to avoid the tradition of trying to win by rooting for the other side to lose.

It’s really not that hard.  Do I think President Obama is perfect, not by a long shot?  Do I think President Obama has made mistakes, certainly?  Do I think he has earned another shot, yes I do.
If you remember, in the fourth quarter of 2008 the US economy was on its proverbial heals and heading south to depressionville.  The economy shrank, not by 2%, or 4% or 5%, but by 8.9% the quarter before President Obama took office.  In the month preceding his inauguration the economy shed 850,000 jobs.  The economy was teetering on the edge of economic disaster.

Today, the economy is growing and has added over three million jobs and the unemployment rate is starting to move downward.  Everyone knows we are not where we need to be, everyone should admit the economy is markedly better than when Obama took office.

I’m going to vote for President Obama because I believe, and most main stream economists agree, the actions his administration took, the stimulus (as flawed as it was), continuing the bailout of the financial sector and bailing out the automotive industry saved jobs, saved our economy and averted a worldwide depression.  It was going to be worse and by doing something, by taking action, by compromising and playing well with others the worst was avoided.

I’m going to vote for President Obama because he has restored the damaged face of the USA abroad.  According to a recent Pew poll in 2008 the positive view of the US was 31% in Germany, 42% in France and 50% in Japan.  In 2011 in was 62% in Germany, 75% in France and 85% in Japan.  There are a lot of reasons for this, some have to do with the President taking a more multi-lateral approach to things, some have to do with winding down two wars and the general inclusive approach of this President.  Our allies having a positive view of us is not a bad thing

I’m going to vote for President Obama because he did something no other politician or businessman or entrepreneur has been able to achieve.  He took huge steps in bringing health care, a chance at health care to all in this country.  Again, the Affordable Care Act is not perfect, he compromised, he relented, he pushed, he got it passed during his administration and it will bring better opportunities for health care to everyone.  It is not a government takeover of healthcare, it is a chance for more people to get insurance.

Clearly President Obama has suffered from his lack of experience and I think a certain naivety in Washington politics.  I get the distinct impression he is getting his legs under him and at this time, because of his recent experience, he is the single most qualified man for the job.  No one in the world that is eligible has any experience at being the President of the United States, just him.

The man ran on all of this stuff and the majority of the country voted for him. He said he was going to do something with health care and we voted for him, he said he would pass a stimulus bill and we voted for him, he said he would pursue Osama bin Laden and we voted for him, he said he would push alternative energy and we voted for him, he said he would push for financial reform and we voted for him.  I voted for him because he said he would do these things, I will vote for him again because he did so many of these things, I will vote for him again because I believe, as President Obama does, that the government should work for all of the people of this country.

When the country faced 9/11 the entire country, Republican and Democrat rallied around George Bush.  When Barack Obama took office the country was faced with the economic equivalent of 9/11, the worst economy in generations.  This administration had to fight, from day one, the attitude of the loyal opposition when their main priority was ensuring “this” President was a one term President.  Obama succeeded not with the help of the loyal opposition, but in spite of it.

I would challenge all of you to make a decision about who you want to support based on why you like that person, not why you hate someone else.  Quit rooting for failure, quit buying into the Kenyan, Muslim, America hating, Socialist meme, it’s just not true and I think when you repeat it, it makes you look hateful.

If you disagree with the policies, great, what is your guy going to do that is different and how are they going to do it.  Convince me they will be better, not by denigrating my guy, but by supporting your own.  

You will not convince me by posting One Big Ass Mistake America one more time on face book, that’s just stupid.  You will not change my mind by complaining about how our President didn’t salute the flag just right or how he was buddies with domestic terrorists.  Those things say nothing about what your support.

Way back in 2009 I ended my very first post with these words:  I will welcome comments -- agreeable or not, because I am confident in my ignorance. I have taken hours and done very little research to substantiate all of my thoughts and opinions, so take them for what they are worth, the ravings of a professional caregiver and sanctimonious liberal.  

Dean, I love you brother.

Tuesday, February 14, 2012

Is the Turtle Dead?

Marty and I are miles from where we started.  Her progress, her improvement from the early days of the strokes is really amazing given our starting point.  

When is enough, enough?  When have things progressed as far as they can go, when do you arrive at “as good as it gets”?  How do you know when it is time to accept the losses, accept things for what they are?   It’s a question that has been banging around in my head since I had a brief conversation with my trainer about a dead turtle.
I have been working with a personal trainer now for a couple of years, you would think, as hard as I work, I would be svelte, but only the morbidly obese would call me svelte.  Gretchen, the trainer, has pushed me, prodded me, goaded me, listened to me, talked to me and been my fitness muse for the last two years.

Gretchen is an absolutely fascinating woman.  She’s a very private woman and you need a can opener to pry her open to find some of the real Gretchen. I love the challenge of plumbing the depths of private people and she is a genuinely private interesting woman who has lived an interesting life and is a paragon of fitness and nutritional virtue. 

Gretchen, bless her black heart, has me doing all kinds of things I would not have thought I could still do at my advanced age and suspect height to weight ratio.  She is sneaky about it, she just simply says, “Here, put these things under your feet, put your hands on the floor and drag your tookus across the floor like a young man.”  

I say, “Okay, I can do that,” thinking this should be easy, it’s not.

While you are sweating and depriving your brain of oxygen Gretchen chats you up to help you forget the pain and the general lunacy in the physical act of jumping on and over a ½ ball thing.  The chatting is pure misdirection to take your mind off the pain.

We were talking about pets the other day.  She has three dogs, two cats, no fish and no birds because apparently the birds get eaten.  She does have a turtle.  She used to have two turtles that her sister gave to her youngest daughter.  She told me one of the turtles died and she had to bury the turtle one weekend when her daughter was gone.  

The real point to all of this was the simple question, “How do you know when your turtle is dead?”  When do you accept what is?

I mean think about, what does a turtle do when it’s alive that it doesn’t do when it’s dead?  Can you check to see if their breathing, check a pulse; look at their pupils, anything, anyone?  

With Marty (I know, it’s a leap), it’s not about a dead turtle but have we reached the best it’s going to be?  I would really like to know if we are at the apex of her recovery and if we, mostly me, need to understand and accept that reality.   I want to know if this is where her cognitive abilities peak, if this is where my understanding of her understanding is as good as it will ever be.  The real question is when do I stop pushing her and when do I cap my own expectations of her and me?  

There are days I get frustrated, there are days I get mad at the slow, turtle like pace of change.  At times, because I am right up close in the middle of everything, it’s hard to see if there is any change, if there is any improvement.  It drives me a little crazy.  I don’t know if we have leveled off, I don’t know if cognitively Marty will improve anymore, I don’t know if we have peaked and this is as good as it will get.  I know we have come a long, long way.  I know where we are today is markedly better than where we were five years ago, I just want to know if five years from now, as we look back, will we look back and see even more progress.  What is real, what is unrealistic optimism?  

For me, it helps me to tamp down unrealistic expectations if I know and understand what is real, what is possible.  It’s key for a reasonable perspective.  Preconceived notions of what we want, of what we would like to be, can be incredibly disappointing and frustrating.  I get angry when my happy expectations are slapped with the cold reality of this disease.  

They tell you that after about six months of recovery from stroke or other traumatic brain injury you are what you are, you have reached your peak recovery.  I reject that notion. It’s been six years since Marty’s second stroke, she still works at recovery every day, she still finds new versions of old skills.  The brain continues to find new paths, new ways to do things.

The question is when is it enough, when will we be at the best it can be, when do we bury the turtle? 
Gretchen said she just watched the turtle for a couple of days; it didn’t move or look alive so it was dead to her.  A lesson for living in her house, you had better be moving or you get buried in the backyard.

I don’t want to think we are done.  I don’t want to think Marty can’t continue to get better.  Marty has always thought she would continue to get better, on this she has never wavered. One of the mantras of recovery is, “I’m better today than I was yesterday, I will be better tomorrow than I am today.”  Believing this, Marty has never stopped trying, she has never simply accepted life as is but has always looked for life as it might be.  Maybe that’s the answer to the question.  

It would be better if the damn turtle would just turn belly up, but that would be too easy.