Friday, June 29, 2012

Mother of Marty

Marty’s mother is 500 miles away and physically deteriorating.  She is 86 years old and spent Marty’s stroke years in a nursing home in her home town of Dalhart, a long way from anywhere, a long drive from everywhere.  We need to go because I think she is coming to the end of her journey in this life and time.

I met Jean in 1974, a life time ago.  Marty and I were in college when I met this woman.  She was barely five feet tall, smoked a lot and drank coffee all the time and she took me to a marvelous steak house in Lubbock that had the most fantastic cheese rolls.

To a small town, sheltered boy who was falling in love with her daughter Jean was an interesting mix of southern bell and eccentric middle-aged mother.  She was the typical southern Baptist woman attached to a large burly man.  She struck me as incredibly worldly and independent but my base view of the world consisted of west Texas.  

In the 40 years I have known Marty’s mother I have never been able to really figure her out.  She was loving, caring, smart, loyal and very passive aggressive.  She grew up a pampered only child adopted by one of the first architects in New Mexico.  She didn’t tell Marty she was adopted until Marty and I were in our 30s and Marty needed some medical history.  She simply never thought it was important.  That was Jean.

I learned pretty quickly that Jean and Marty loved each other but at times, many times they didn’t like each other very much.  Jean was to her husband, “You’re right, you’re right, you’re right as rain.”  Marty was, “You’re wrong and I’ll prove it.”  Jean mastered the art of passive aggression, Marty got the aggressive without the passive part. 

They were/are so very different.  But they are both dogged determined survivors.  Jean is so far away because we wanted her to live her last days close to her home and her friends and with her poor health we didn’t think she would be long for this world.  That was eight years ago.  Marty’s fight for survival, Marty’s instinct to live come honestly.

Jean has suffered from age related dementia for several years.  The dementia was apparent even before her husband died, she had quit being engaged, she had quit being able to fully care for herself years before Arty’s passing.   

When I first took Marty back to Dalhart after her 2nd stroke we went to the nursing home and I rolled her into Jean’s room.  We hadn’t been there for two years because of the strokes.  Jean, who was watching television in her room, immediately sat up in her own wheel chair, startled by seeing Marty, seeing Marty clearly impaired, seeing Marty in her own wheelchair.  

It was the second time I had seen Jean, in spite of her dementia, in spite of her physical and cognitive frailty, respond as a mother.  She was shocked and clearly dismayed that her daughter, her youngest was in a wheelchair.  She looked at me for an explanation and wanted to know what had happened.  As I related the stroke stories she reached her hand over to Marty’s, grasped, then patted her hand as they sat together, side-by-side in their chairs.  It was one of her finest moments.

Any trip for us is hard because of Marty’s medical condition and overall frailty.  This trip, 500 miles, nine hours one way, is best described as arduous.  Marty wouldn’t have it any other way.  She feels called, compelled to make the trip to sit beside her mother, to touch her mother, to whisper to her mother, maybe for the last time.  

Me, I make lists of stuff, I gather stuff, I pack stuff, I load the van, Marty and her caregiver ride, I drive, and drive, and drive some more and then unload everyone and everything at your friendly neighborhood Holiday Inn.  It’s a bone cruncher.

Like our other trips to Dalhart we will make a quick turn-around.  I don’t like keeping our caregiver away from their family too long and motels aren’t a great place to care for someone who is incapacitated.  We get the accessible room, but it’s not very comfortable for any of us.

On Saturday, tomorrow morning, we will get into the van early that morning with all of the associated tools, bags and stuff that are required for Marty’s care.  We will turn the van north and I will drive as fast and far as I can without stopping or getting stopped.  

We will go see Jean and while she may not know that we were there, she may not respond to me or her daughter, we will know we were there, we will know, Marty will know, she made the trip to reach out and touch her mother one more time.

Its nine hours across Texas from central Texas to the top left hand corner of the panhandle.  Its nine hours back, it’s a bone cruncher, it’s worth the effort.

Friday, June 15, 2012

A Prayer for Marty

Before the strokes Marty had an active prayer life.  We talked about it, she talked about it, she wondered about it out loud, we talked about why she prayed, what it did for her.  She always felt that somehow prayer helped center her and helped her understand the life she experienced. 

For Marty, for me, prayer was very personal, it was a very personal way to connect with God, to connect with what we both hoped was divine inspiration, to what we both hoped was something greater in our world.  

It’s why she chafed at the spectacle of public prayer, the prayer at the ball game that was more of a sermon than a prayer, a prayer at the meeting that wasn’t a personal and intimate conversation with the One who knows you the best.

I don’t suspect she had the traditional pray-er pray-ee relationship with God, Marty wasn’t a big religious traditionalist.  I wouldn’t even say she was deeply religious, she was deeply spiritual, she believed in something larger than herself and worked at trying to find the key to discovery of how that worked and how it impacted her life and the world.

Right before her first stroke stole part of her ability to think she found a book of prayers, Guerrillas of Grace, by Ted Loder.  She loved the book and read from it and quoted from it often with some of the prayers touching her soul.  

I’ve read it, focusing particularly on the dog eared prayers, the ones that touched Marty before the strokes, the ones that spoke to her life.  The prayers speak to her desire for God to bring her ever close, to soothe her anger and judgment, to help her let go of the pain of loss. 

When I read them I am touched, touched by the way my wife moved through her life, touched by her prayers then and what her prayers would be now if she had the clarity of thought she once possessed.    
I asked her other day if she still prays.  She said yes but when I asked about what I was met with silence as her brain tried to retrieve that information from pathways that are blocked by damaged brain cells.  The thought, like so many disappeared into the wind. 

I am narcissistic enough to think I know Marty’s prayers; we talked and if I were to give her a bit of a boost, a running prayer start so to speak, I think it would go something like this.  (We already know the beginning from a previous prayer event)

Dear God,

Hello, it’s been awhile.

I’m still pretty pissed about this whole stroke thing.
I don’t understand why the God I love would allow this to happen to me.  I don’t like it.  I don’t like not being able to think clearly, I don’t like not being able to say the things I want to say when I want to say them, I don’t like all of these people touching me, rolling me over, poking me and prodding me.  I hate the lack of control.

I’m thankful I survived, but I wonder, so often, I wonder why, why did I survive, why did I end up like this, why did the things I most prized in myself, my thinking, my talking, my humor,  have to go?
My God, I believe in you as a God of love, as a God of gentleness, as a God who gentles my spirit and my heart.  I don’t pray for a cure, I don’t pray to be able to walk once more, or hold my husband or comfort my children or guide my grand children.

I simply pray that you help me know that I am not too much of a burden, too much of a hardship, too much for those that I love.  Mostly I ask that you give me the strength, grace and patience to live the life I have and to accept and embrace my life as it is today.

I am thankful and blessed by my family.  It’s not often in our life we get to see how much we are loved, I have and knowing the depth of their love fills my heart.  I am forever grateful I have been around long enough to see my family live their love for me.

I am grateful I have seen more days, more blue skies, more rain, more clouds, more babies’ smiles.  I am grateful I have seen my daughter married and become a mother, my son grow into a wonderful husband and father and I have had the privilege of seeing and touching my true legacy in this physical world, my grandchildren.

I will always wish I could be more of who I was,  wish I could cradle those babies in my arms, wish I could  teach them about life and all the pain and beauty it holds.  I wish I could sing to them, I wish they could know me, know me for who I am inside, know me as I was.

God, there are days I wish I could sing my thankfulness loud enough for all to hear and there are days I want to beat my chest and cry and curse everyone and everything.

With all these things, I am here today and for those blessings and curses alike, for all of the small blessings I see every day, I give you my thanks.

And, with all that said, Amen, Goodbye and have a nice day.

Monday, June 4, 2012

An Immoral Dilemma

It crosses my mind.  Occasionally I think about it, maybe too much, maybe too often.  Then I feel guilty.

It hasn’t happened, in the years since the strokes, it hasn’t even been close, it’s just there, too much, too often. 

It’s not like I am a paragon of virtue, it’s not like I have had to turn people away, there haven’t been any real opportunities, it just hasn’t happened, but the guilt for just thinking about it, for rationalizing it, is omni-present.

 I recognize there are people in the world who don’t need to closely connect with others, they don’t need an intimate relationship, they don’t need to be touched, they don’t need to be held, kissed, or caressed.  I’m not one of those people. 

The longer this care giving gig goes, the more I come face to face with who I am and what I need and want.  I need all of those things, I need intimacy, I need affection, I need to be held tight, it’s more than just want, it’s more than just desire, I think I need those things in my life.

There are a lot of people in the world who are either in the same life circumstance as Marty and me or have been there and moved on with life.  Our circumstance is unusual because of our relatively young age but we are not wholly unique and I am not the first to struggle with the concept of living a promise when so life’s circumstances have so radically changed.

There are many, like me, who have had a forced and premature celibacy.  There are many like me who forgo and miss the physical and emotional intimacy that is a part of a healthy relationship between two loving and caring people.  It’s not news that some of those same people try and find ways to meet those needs through someone other than their life’s partner.  It’s also not news that those affairs are fraught with guilt.

The plain truth is the tug of touching, holding, being held, is inevitable and for some of us, primal and part of what makes us a whole being.  To find ways to get physical and emotional needs met while keeping faith with the person you promised to love and honor in sickness and in health till death do you part when they can’t meet those needs is a long impossible struggle.

The needs, the desires don’t die with the onset of catastrophic illness.  They get set aside, they become a low priority for a while, but they still exist, they still pull you, they still start deep in the pit of your stomach pulling and aching to be released.  The feeling, the desire to touch and be touched never dies, it’s like being really thirsty and the only thing around you is the salty ocean, forbidden, untouchable, dangerous to drink, and, like time spent afloat on an empty ocean, the longer you are there, the more isolated, the more thirsty you become.

Just to be clear, this not just about sex.  This is about intimate two way conversations, this is about a touch, a breath, a smell, a sight; this is about the kind of intimacy human beings were created to crave, this is about tactile and emotional touchstones that make us very human and make us want to be with another being.

I can rationalize the idea of finding someone to fill the gap, to meet the need, in fact, I have.  In my mind, in the dark parts of my mind, I have rationalized developing a relationship with someone else, having an affair.  Why not?  I have a wife whom I love and cherish but through no fault of her own or mine simply can’t love and cherish me in a demonstrable way, and that will never, ever get better.  I’m a good, loyal man, how far does the good and loyal have to go?   

I know Marty loves me, I know she appreciates beyond measure what I do for her, what I have sacrificed for her.  I know I am forever and always in love with her, we both know and understand there are things in this life she can never do again, ways she can’t care for me.  Is there a moral high ground here?

It’s a problem, a problem for a lot of spousal caregivers who come to the realization that significant and meaningful parts of what once was can never be again with their spouse.  It’s a problem because the need to be emotionally and physically loved doesn’t go away, the needs continue, they exist in a very real way, in a way the broken spouse can’t meet, in a way that directly contradicts the vows of marriage. 

The vow I took, the promise to love and honor, in sickness and in health till death do us part stays with you.  Sometimes the dreams, the fantasies a real human being constructs don’t include the vows, they hide from the promises I made 35 years ago.  The vows don’t take into account living with illness, caring for the chronically ill, forgoing an important part of life that you are not ready to forgo, that no one should be required to forget.

There are no good answers.  The real answer is for no one to get so sick and still live.  How’s that for the hard and ugly truth?  I neither like nor accept that truth, it’s not what I want now, it’s not what I want for tomorrow.  I don’t want the illness, I mourn for Marty and I grieve every day for my own loss, but I cherish her presence even in the face of the loss of parts of my, our life.  

I don’t know what to do except keep doing what we do, keep living day to day and accept what comes tomorrow as part of the process.  I don’t know……