Tuesday, December 23, 2014

Love Because

So she knows.  So you all know.   I don’t think I have some sort of heroic love for Marty in spite of the infirmities.  I’m really not that altruistic or giving.  The strokes have changed us, the strokes have altered our approach to life, the strokes do not define how we love.

I love her just because, just because she is who she is.   I love her because of what she has done for me; I love her because she still does things for me. I love her because that’s where my heart leads me.

I love her because she still laughs at my stupid jokes and my 14 year old boy humor.  She laughs even when I’m not funny and frankly, that’s most of the time.

I love her because she looks in my eyes and tells me honestly, because she is no longer capable of deceit, “I love you……..a lot.”

I love her because when I bend down to kiss her cheek she looks at me and says, “Again.”  I kiss her cheek again and she says, “Again.”  That goes on for five or six times until she is satisfied.

I love her because when I touch her back she says scratch and then with her right thumb she guides my hand, up, down, right, left, to the spot that itches.

I love her because when she is pushed up to the table and looks at the food I have prepared she always says, “That looks good.”  Again, she has no deceit in her, she means it, and sometimes the food is not that good but she eats it without complaint.

I love her because she forgives all of my sins without pause.  When I get angry and then apologize she doesn’t hold anger in her heart she very simply says, “That’s okay.”   

I love her because when I say I’m going to take some time off, some time away from care giving, she has never once, not one time said, “No, don’t do that.”  Instead she always says “That’s a good idea. “ And, when I return, she always says, “I missed you,” even when she doesn’t remember I had been gone.

I love her because she has taken all the world has thrown at her, the loss of physical functions, the loss of cognitive abilities, the loss of communication skills and she has survived.  She has survived the countless indignities that go along with this disease and approached them all with grace, dignity and a sweetness that covers up the anger and disappointment that I’m sure exists on some visceral level.  

I love her because she is cleverer than it may seem.  As she watched me gather Christmas gifts and items she kept asking me, “Is that from Kindler’s (her favorite local jewelry store).”  She kept asking about different boxes, she wanted to know if that was from Kindler’s.  She knew they weren’t Kindler’s boxes….she knows a Kindler’s box.  And yes, I’m headed to Kindler’s before Christmas.

I love her because she trusts me and depends on me for her care.  She doesn’t trust just anyone, but she looks at me and I know she has faith in me to care for her, to support her and to ensure she is safe.  Her faith in me is probably stronger than my faith in me and I love her for that.

I love her because through all of our years together, through all of the ups and downs and vagaries of our lives she has made me a better person.  She has challenged me, she has defied me, and she has raised my own expectation of myself.  She has taught me to listen and learn.  She has taught me humility and given me confidence.  

I’ve never known anyone with Marty’s passion, her wit, her wisdom and her heart.  She is and will always be one of a kind.  She continues to make me laugh and when she laughs it brightens my heart. 
You gotta love that in spite of it all.

Friday, December 19, 2014

Loving In Spite of Life

I see her watching me as I decide on gifts and sort them and package them for Christmas.  I see her brain haltingly process what she sees, I see in her someone who wants to break out and tell me I’m doing it all wrong and to just step back as she fixes the mess I’m making.  

I asked her what she was thinking and she said, “I feel bad because I used to do that and now I can’t.
There are too many things gone.  The stuff she can’t do matters to Marty, it makes a difference to her.  And, yes, what she can’t do matters to me, what has been lost matters to our children and family.  

We love other people.   We can’ help it.  I think it’s the natural human condition.  Most of the time loving someone is really excellent; sometimes it gets really hard, some people do things that make it really hard to love.

I’m not particularly comfortable or good at being cynical (I’m a lousy poker player) and I’m not even sure it is necessarily a cynical thought, but I think most of the time we love people not because of what they do but in spite of the things that they do. 

It’s been my mantra for years.  When I managed call centers it was my daily prayer because there were some people who were really hard to love….I don’t need to name names, you know who you are.

The fact that Marty married and loved me and stayed with me for over 35 years proves my theory.  Marty loved me, even though she sometimes didn’t like me.  She loved me in spite of my lack of self awareness or understanding.  She loved me in spite of my obsessive approach to my career and how too often the job took precedence over more important things.  She continued to love me as we moved from one town to the next when she never wanted to leave where we were.

Our children she loved (loves) unconditionally, in spite of their moody, lazy, self-absorbed adolescence.  She once told me that adolescence was God’s way of preparing us for our children’s pending independence.  She said by the time we got through the teen age years we really wanted them out of the house.

In spite of our spawn’s perfect upbringing our children did not always behave perfectly and at times got on their mother’s last nerve.  I know because she told me, a lot.  She loved them anyway and was always their fiercest defender, even when she was angry at their behavior.  She loved them in spite of the behavior.

Marty loved her children and me with a passion; she didn’t know any other way to love.  She took the kids to the doctor and dentist and orthodontist.  She helped with the school projects; she was their educational advocate and biggest cheerleader.  She didn’t do any of that to earn their love or respect. 

Her love was never predicated on it being returned, it just was because they forever belonged to her.
Fast forward to today, Marty the mother, Marty the wife is different.  She can no longer be the advocate or the defender or the counselor or the adviser or the problem solver.  As I lost part of my partner our children lost that part of their mother.  

What did not go away was their love for their mother, they love her in spite of the strokes, they love her in spite of the losses.  We all love her more dearly in spite of it all.  It matters to her that I’m standing there wrapping and bagging Christmas gifts and frankly I would like to have her doing it. 
I never loved her because she did that stuff, I still love her in spite of the fact she can’t do it anymore.  That doesn’t make me or our kids heroes, it makes us human.

Our lives have been a constant sea of role changes over the past years.  Disability alters so many things.  I think Marty, at times, feels “less than” because of her brokenness, I think, at times, Marty doesn’t feel like she can fulfill her role as wife and mother.

Love is not predicated on what one does for another.  Love is about accepting the sins with the sinner and loving past the sins, loving past the brokenness, loving in spite of what we do or don’t do. 
I hope it’s the human condition. 

Friday, December 5, 2014

How Do You Feel About That

“How do you feel about that?”  It was a big question for Marty; it was an important question for her, it was a question she taught me ask. 

First you ask, “How do you feel about that?”, then you work on learning to listen to the response, then you learn to quit saying, “Well, you should just quit feeling that way, that’s dumb.” 
Uh, yeah, guess what was dumb, saying that.

Yes, I know, how could someone enlightened ever utter those clearly stupid words?  Clearly I haven’t always been that enlightened.  Clearly, living with Marty and listening to her has led me to great wisdom.

Marty taught me, not without some screaming and shouting, that other people have feelings that I may or may not understand.  Other people may have feelings that make little sense to me and it doesn’t matter if I agree with the feeling. 

Unfortunately, or fortunately, I’m not in charge of how other people feel.   Other people get to feel based on their perspective and life experiences, I can’t change it, I can’t fix it, and my thinking their feelings are stupid is….well stupid.

I learned from experience that Marty saw and understood things differently from me.  As much as we were alike, our life experiences were different enough, our psyches diverged enough that we saw things differently and felt different things.   

It was ridiculous for me to pass judgment on her feelings based on what I felt, on my experiences.  She was allowed to have her own feelings, she was allowed to be sad, happy, mad, or distraught even if I wasn’t and to discount those feelings were discounting her and just plain wrong.  We have to try and understand another’s perspective before saying, “Well, it’s dumb to feel that way.”

So guess what white people, we don’t get to tell the black folks in Ferguson, Missouri or any other place how they should feel or act.  We don’t get to say you shouldn’t feel mistreated and mistrusting just because we have never felt that way.  

If someone I have lived and loved with for 40 years has had different feelings and experiences it’s a lead pipe cinch that African Americans will have had different experiences from my white, privileged self. Our experience as white folk is different than those who have too often been mistreated because of pigmentation.  We don’t get to pass judgment because we don’t agree with the feelings of anger, fear and distrust.  You can disagree, but you can’t say it’s stupid for those folks to feel anger and fear.

The simple fact is we don’t have to know or understand or agree or validate those feelings.  We do have to respect that other people legitimately, because of their lives, see things and feel things differently, not better, not smarter, not dumber, just different.   

These feelings, these emotions aren’t always productive, I get that.  In fact, they are sometimes counterproductive and are expressed in ways that are damaging.  That does not negate the fact that people feel for different reasons and we don’t get to discount those emotions.  It works best if we can try and understand why people feel the way they do.  Frankly it’s not that hard.

Marty’s mother, Jean, once wrote me an incredibly nice note and thanked me for loving Marty.  She thought I brought out the best in Marty and thought I had helped her learn empathy.  

Truth, Marty is the one who helped me with empathy and understanding; she is the one that taught me to ask, “How do you feel about that?”  She is the one that taught me that all I needed to do was accept other’s feelings, not pass judgment on them for feeling something I didn’t understand. 

I still ask Marty how she feels about stuff.  More often than not I get a standard, “I don’t know” response.  I suspect that is the truth.  Through her stroke fogged brain she probably doesn’t precisely know how she feels about something.

It doesn’t matter.  I know she still feels, I know it still matters to me and I know how she feels belongs to her.  My job is to ask.

Monday, November 17, 2014

So Many Closed Doors

I won’t say parts of Marty actually died when she had her first stroke, I can’t say that, it cuts too close.  I can say mental and emotional doors were closed forever on April 2 2005.  Even more doors were closed and nailed shut on January 3 2006 when she had the 2nd stroke.  

Strokes do that, they shut down parts of the brain and change lives.

My natural inclination, what I feel I must do, is to point out that as some doors are slammed shut others open.  Not really, not all the time, not this time, not in cold, clear, real life. 

The brain is remarkable in the way it finds to reroute certain things, commands to different parts of the body find new routes, orders for speech get confused but interpreted in a new and different way, directives to walk go through new neural pathways.  Brain damage is not healed, burned out brain cells don’t regenerate, if you are lucky your brain figures out some detours around the locked doors.  

On April 2 the loud, aggressive, funny, proactive part of my wife stopped being.  On that day, almost ten years ago, the parts of Marty that were loquacious, argumentative, meddling, problem solving and intense simply disappeared.  She still existed, she still laughed, she still loved, she still lived, but critical parts of her, important pieces that made her distinct, pieces that I loved, ceased to exist.

I didn’t complain I was just grateful she was still alive and able to communicate.   I came to understand that the parts of Marty that were left were also parts I loved; it was just different, markedly different.  It was the new normal people confront when doors are closed.

The stubborn as a mule door, the doggedly insistent door, the part of Marty that wanted what she wanted was still there.  Her remarkable brain still worked enough to help her figure out she still wanted to drive herself, she still demanded to have some independence, she still had some very clear demands for her life.  While critical doors to her personality had been shut tight, others remained open and she was alive.

After January 3rd more doors, more really important doors closed.  That stroke was more damaging, that stroke took more of Marty away forever.  The walking doors were closed, the sitting up independently door was closed, the right brain that controlled her left side was walled off from her left arm and leg.  Big, huge, critical parts of Marty were gone, there one day, gone the next.  I missed what had been just days earlier.

Marty was alive but parts of her, parts I loved, parts she loved, parts her children loved and needed, parts her friends admired were simply gone, there one day, gone the next.   I had thought we lost too much after the first stroke.  I should have been grateful for what had been left,  I should have relished the doors that remained open.  Too often we don’t understand that things can get worse.

It is surreal that changes, life altering cataclysms, happen in the time and the way they do.  A second, a minute, a miniscule interruption to blood flow and pieces that have been a part of you for decades are gone and you are irrevocably changed.  

The doors are closed not because Marty wants them closed, she argues the point, she fights the pieces of her that have died.  She wants to beat down the you can’t walk door, she hates the you can’t think clearly door and she badly wants to open the best grandmother in the world door.  But, they are all stuck shut, just like the windows her mother painted shut in her childhood bedroom.

Doors get closed; really important doors get slammed shut instantaneously and we are changed, we are never the same because pieces that were once there are walled off from us, like they have died.
It’s too hard, it’s too close to what really happened to say parts of Marty died on her stroke days.  Death comes in different ways at different times and in different phases.  

We continue to live, Marty continues to live and I’m truly grateful for the years in between the strokes and our new normal days.  Marty is different, so am I.  

I guess in a weird way that’s growth.

Saturday, October 25, 2014

Choosing Your Family

My uncle in Houston recently passed away and his funeral was being planned on the same day as a planned trip to Dallas to watch the red headed David Beckham, my five year grandson, Noah, play futbol. 

I called my son Matt to check on start times and talk to him about my choices.  Should I go see the grandson ply his soccer skills or should I do the right family thing and make the trek to Houston to pay respects?

I wasn’t completely flummoxed, I knew what I should do, I was caught between doing what I wanted to do and doing what was the right thing to do.

Marty was always my go to person when I was dealing with a conundrum, when I wasn’t flummoxed but needed a push in the right direction.  Marty had an internal compass to help point the way and she was never reluctant to tell me where to go and how to get there.  

The strokes really burned out that compass.  She’s a good listener and incredibly supportive of whatever I decide but she is not so much for the advice anymore.

I have a core group of people I turn to when I need to intellectually bounce things around, when I need to check my own moral compass.  My daughter is great to talk to about dealing with people.  She has her mother’s intuitive approach to humanity.  

My daughter-in-law keeps me in line socially; she helps me navigate the rather strange waters of being polite.  My son-in-law is the out of the box thinker, the one that sees a different way to approach a problem; he keeps us all from group think.

This one was for Matt, our son.  He can be my moral compass.  It’s not that he is “better than” or even thinks he is “better than”, he just has his mother’s compass.  Like everyone else I know he doesn’t always go where the compass points, but, like his mother he knows where it’s pointing, and, like me, he feels appropriately guilty when he ignores the needle.  He is an amalgam of his mother and father.

We talked and I told him my dilemma, which really wasn’t a dilemma; it was a case of want to versus an important need to and I already knew that.  He told me a story (that technique sounds vaguely familiar) about Noah, his five year old not wanting to get up for school.  The kid likes school, he just doesn’t want to get up and do the morning get ready hustle.  Matt told him that sometimes in life we have to do some things we may not want to, but we do them because they are important.  Again, it all sounds vaguely familial (not a typo).

Family, my family has become central to Marty and me.  In living my very important ego driven pre-stroke life I too often neglected family.  I talked a good game but my follow through kind of sucked.  That has changed; Marty’s illness has taught me the importance of family.

Sometimes a family fragments when something catastrophic occurs, not mine.  My entire family, our kids, their spouses, my parents, my brother, my sister, their kids have all rallied around Marty.  They have loved her, they have loved me, and they have unconditionally supported both of us.  Marty, in her own way has taught us all about the importance of closeness.  She, at least in my mind, has helped me find my family again.

I went to the funeral; I will go to one of Noah’s soccer matches another time.  I didn’t go to the funeral because I am a helleva guy, we have covered that before.  I didn’t go because of some sense of familial obligation or even because we sometimes have to do some hard things.  

I went because Marty taught me the importance of family; I went because, as my little brother said, it’s family.  Family is a big deal to me.  I admit it wasn’t always so, I now understand why it is a huge deal.  

I know what Marty would have told me to do because her legacy, her children told me.