Saturday, March 24, 2012

"You Got Me?"

I’m on her right, my right arm under her right arm, my left holding the back of her pants; she looks at me and says, “You got me?”  I nod.  She turns her head to her left, looks at Erica, her caregiver who has one arm under Marty’s and one arm gripping the back of her pants.  She looks Erica in the eye and asks, “You got me?”  

We then go 1, 2, 3 then lift to stand Marty up at the sink.  We got her.

It’s not a plea, it’s not a command, it’s a simple question that is not really that simple that carries across our lives, and “You got me?”  

You bet I got her.  I would never, ever let her fall.

Marty asks that question a lot; she has asked it, one way or another, for a long time.  In the past the question took on a larger meaning, today, its Marty’s way of doing a couple of things. 

When she asks the question, she expects focus, strength, and skill; it’s not a rhetorical question.  She wants the reassurance that you have the situation under control and that you are capable of lifting or twisting or pulling or pushing, whatever you’re doing.  It’s also her way of controlling the pace and flow of action, her way of controlling what we are doing to and for her in a life where she has surrendered too much control.  It’s Marty saying, “I’m watching you, I’m setting the pace and I’m making sure you are prepared.  You got me?”

In a deeper more introspective way it’s a question Marty always wanted to know, always wanted to ask but never really did.  It’s a question all of us want to know of our family, our friends, the people we love, the people we hope love us.  We want to know, when we need a lift, when we need a hand, will you help me before I fall, “You got me?”

It took the strokes, supreme life altering events, it took a complete fracture of her life for Marty to get the courage to look me in the eye and ask me the question, “You got me?”  She was never sure we would, get her, help her if things fell apart.  She wasn’t sure we loved her enough, she wasn’t sure she should be loved that much, she didn’t ever know if she was that lovable.  It’s hard for any of us to think we are that worthy.  

I have to confess, there have been a lot of times in my life, up to and including today, when I wanted to turn to Marty, to friends, to family and ask the question, “You got me?”  Pride makes it almost impossible; pride says the question makes you weak, pride says you can’t ask before you fall, pride says you can’t express fear of falling.  Pride keeps us from hearing love.  

Reality, ego, our very essence says we need to know that there are people around us who will not let us fall too far and if we fall they will be there to pick us up.  We have to believe, we just can’t ask, we can’t be that vulnerable.  

Marty is not unique there, just like most of us not sure of our self worth, she has felt the pull and push of ego and pride, but because of her broken brain she has found the courage, the need, to ask the simple question, “Will you keep me from falling, do you love me enough, am I worthy of that kind of love.”
The strokes have put Marty in an uninviting but unique position in life.  She gets to see how much she is loved, she gets to see how much her husband cares for her, she gets to see how steadfast her children are, she gets to see her family lift her up and close ranks around her.  Most of us have to die and be eulogized at our funeral to find that, and then it’s kind of late for it to matter.

I am painfully aware I haven’t always showed it to Marty; I know I never said it enough and I am certain I never said it in a way she truly believed.  Marty has had to live through a part of life we all want to avoid  to discover that  I will never let her fall, that I will always love her enough and that she is worthy of all our love.  

The truth is, most of the time, through most of our lives, today and every day, I hope I am worthy of her.  You bet I got her.

Tuesday, March 20, 2012

If Your Happy and You Know It

Snoopy, the oracle Beagle of Peanuts fame, dancing, feet pulsating, moving rapidly, nose stretched to the heavens shows it.  Brandy Chastain, running, arms held high, hands gripping her jersey she just ripped off, unabashedly celebrating victory in a way where everyone recognizes the sheer joy of the moment.  They exude and manifest happiness for all to see, unbridled, unashamed, total immersion in joy of the moment. 

Spontaneous joy like that has always makes me smile, regardless of the circumstances.  The unprovoked celebration, the instant laugh, the involuntary smile, the automatic lifting of the arms does something to me, it’s contagious, I smile, I borderline laugh every time.  Unadulterated joy is contagious.

Personally, I’ve never been that demonstrative.  I have seen happiness, I have been enriched by pure joy, I’m just not the jump up, rip my shirt off kind of guy, that would scare people.   

Marty was so much better at knowing and experiencing her emotions than I ever was.  She could be the saddest, the angriest or the most joy-filled person I knew.  You never doubted where Marty was, you could see it in her face, in her demeanor, in her ability to celebrate even the most inane moments.
She got that from her Dad who could dance a jig even at 70 years to let the joy out of his body.  Marty reveled in happiness, though I never saw her rip her shirt off and run around the house, Marty never ran anywhere.  The strokes have changed Marty’s essence, her God given ability to experience spontaneous joy in life has changed, it has clearly been diminished.  She still feels happy, she still laughs, but I miss the bold loud laughter.  I miss that, I miss smiling at her laughter.

I’ve always been envious of unrestrained joy.  Sometimes I barely remember how it feels, to simply jump for joy, to dance the happy dance in an unrelenting display of happiness.  I remember it as a child, the innocence of a child; happiness not tamped down by reality or smothered by a sense of relief that you have survived something.   I do feel it, I don’t know if it’s the same as Marty or her Father, but I do know and recognize great joy, not just great relief.

The picture at our wedding shows my version of joy.   Marty and I walking down the aisle of the Presbyterian Church in Dalhart Texas, Marty looking beautiful in her wedding gown, me styling in my plush velour tuxedo with the ruffled shirt.  As we are retreating down the aisle after the vows and the very public display of affection a wedding requires I spy my Uncle Dean and I smile, point and continue walking, it’s in the photograph.  For me, it was my sign of total happiness, my way of ripping off my shirt, pointing to the sky and screaming, “We did it.”

When our children were born, I felt amazing; I felt a happiness and contentment that can’t really be captured.  With Matt, in Paris Texas, in 1979, believe it or not, they didn’t let fathers in the delivery room, afraid we might pass out or see something scary we didn’t see when making the baby.  I was relegated to the waiting room and had to sit with Marty’s parents as a miracle occurred a few yards away.  It was an interminable wait and the happiness I felt when the doctor came out to tell me I had a son was palpable; it was incredible that I now had a son that had ten fingers and ten toes and an enormous cabeza.  Marty later said he had eight pounds of head.  

I got to see Erin born three years later in a tiny hospital in a tiny north Texas town.  We knew everyone in the delivery room; they were all friends and neighbors.  No, we didn’t invite the neighborhood for a picnic and birthing, we knew the medical team as friends and neighbors.  It was amazing, it was incredible, it was more than a little frightening.  I didn’t do the happy dance, I didn’t rip off the scrub top and run around the delivery room kissing all of the staff, but my heart did.  

It was a different kind of happiness, not joy, but happiness completed washed by relief when the doctor came out to talk to us after Marty’s cranial surgery to repair the ruptured aneurysm in 2005.  I know it wasn’t joy I felt, how do you feel joy at that moment, at the news your wife has survived brain surgery.   Happiness was a part of it, she lived, she survived when so many didn’t, but I was too overwhelmed to feel joy at her survival, there was no happy dance anywhere.

The closest I have every come to flinging off my Texas, man sized inhibitions and dancing and singing for joy was when I saw Marty, about 10 weeks later, standing atop the three step platform her therapist used for exercise.  

She was standing, which was amazing in and of itself, she was standing after climbing three steps, she was standing after cheating real death, she was standing with minimal support from her PT with her right arm raised, index finger pointing to the sky her left hip canted slightly left in the Saturday Night Fever pose of John Travolta.  It was the most amazing moment, the most joy filled visual I have ever had.     The memory of that moment still makes me smile.

I don’t know if it’s all about the moment or the event or the circumstances.  I think that unrepentant joy, unrestrained happiness just happens.  Some raise their face to the shining sun like Snoopy, some dance naked before God like David, some run with tears of joy, some reach to embrace those around them who have fought so hard.  I love to see joy, I love to feel it, I’ll take it, I’ll live in it any way I can.

Friday, March 9, 2012

Going Around the Barriers

Curtains, doors, fences, thoughts, fears, ideas, there is always some kind of barricade, some barrier keeping us from accepting, keeping us from embracing, keeping us from understanding what we don’t understand.  Marty’s life, our life, has slowly become about conquering barriers, physically and emotionally.

Our minister, our friend is retiring, he is leaving our church after 30 years, he is leaving it better than he found it.  As he prepares to leave I have tried to get my lazy arse to church and hear his last few sermons preached at 1st Presbyterian.  He has always been thought-provoking, eloquent, passionate and tolerant in his messages.  He says he is not a man of great courage, but he speaks what he believes and I believe that takes great courage.  He had always reached Marty because he always understood the broken among us; he always spoke to their heart.  That’s part of why Marty said she wanted to go too. 

Our denomination recently made the decision to quit worrying about a person’s sexuality as a condition of ordination. Sadly, it has been a divisive issue in our denomination and has caused much consternation in the more conservative congregations, go figure. 

A couple of weeks ago Jimmie talked about the issue of acceptance, simply, eloquently and in a way that helped many understand the role Christians should play in the evolution of thought.

In the Gospel of Mark, at the crucifixion of Jesus, Mark writes about how the curtain in the Temple is ripped in two, how it is torn apart.  Jimmie connected Jesus to tearing down the curtains, the barriers in the church, the barriers in our lives.  He talked about how the church, how the people of the church, should not be about erecting barriers, putting up curtains, but we should be about tearing down the barriers and opening the curtains to all even if it scares us a little.

I got it at the time; I understood it at the time and was proud that this man was my preacher, that this man was my friend.  What he said connected me to things, made sense out of seemingly inconsequential stuff.  We all do it, we do it all of the time, we put up walls, we erect barriers in our life to make us feel safe from things we don’t understand, from things we fear because they are different, new or hard.

It took one more trip to church with Marty and a conversation with Gretchen, the fitness muse, for it to really make sense to me, for the whole thing, the whole idea of breaking down barriers to really make sense to me in my own life.  

Marty and I went to church last week to see our friend one last time and, at her request, we sat at the front.  There are four pews that have a cut-out on the aisle side for wheelchairs, two at the front on either side of the sanctuary, two at the back.  The front pew, the first pew, has a solid wooden modesty panel at the front, I suspect to keep the preacher’s eyes on the Bible and not the knees of their parishioners.  It restrict wheelchair turning and it makes it hard to move the wheelchair in and out of the section, but I respect the need to keep preacher peeking to a minimum.

I saw the communion elements on the table,  and not to my credit,  during the service, rather than enjoying the service,  I spent too much time ruminating on how or if I was going to try and smoothly get Marty and her chair past the front panel and into the aisle and down to the front to take communion.  Barriers, barricades were pretty high in my consciousness.  I knew we would be clumsy, I knew it would be slow; I knew we would impede an orderly flow.  We did it anyway.

As the words of the table were being spoken, as the bread was being broken, I whispered into Marty’s ear, “Do you want to get out and go down front?”  She nodded, she wanted to get out and be like the rest, she wanted to find some sense of normal in our abnormal state, she wanted to go around the barrier in front of us.  She is self-conscious, she is not a coward.

I think that’s what Marty and I need to do; I think that’s part of what Marty and I do for others who might fear their own future of dependence.  By living and doing we can show others that barriers will not keep us from trying to do, from trying to participate.  I think we can show people through our rather odd life that life continues, even if it’s odd.  Of course the people in our church understand, of course they are accepting, of course they appreciate the difficulty, they love my wife.

It’s not the same everywhere, some don’t understand, some don’t have patience, some just want you to move and not be seen.  To those people I say, thppppt, you are just one more stuck door, one more high curb, one more barrier we have to circumnavigate.   
Our job, our life is about moving through and around the barriers.  I hope every time someone sees us negotiating a difficult path, a man and his wife futzing around in a wheelchair, they develop a little bit better understanding.  I hope they see us not as a tragedy, but what is possible, what two people can do.

Just like at that communion, I hope that’s what people saw. 

We have already established that I’m not a graceful man but I managed to crawl over Marty that Sunday, I managed to muscle her wheelchair out into the aisle and Marty, despite her self-consciousness, despite her disability, because of her courage, she lifted her hand to take the bread and carefully dipped it into the cup as we were reminded of the sacrifice of others.  To get past a barrier sometimes you don’t need grace, you need brute strength, courage and hope.

Everyone waited just a few seconds as I took Marty back to her pew and manipulated her chair back beside the pew.  I sat directly behind her, with my right arm on her left shoulder.  As the congregation walked by our right side to the front of our church to break their bread and drink from the communion cup many who knew Marty when, many who never knew her before,  reached out and gently touched Marty on her right shoulder, some hugged her, some just smiled.  Each time one of them touched her shoulder, I know they touched her heart, I know they gave her the strength to climb the next hill.

It’s what happens when you tear down the curtain, you get to see out the window; you get to see it’s not that scary, you get to see what is possible.

Monday, March 5, 2012

Pieces of Marty

It is real, it is fact, death comes, slowly, quickly, whole or by piece, death is a part of us.  Some of us go quickly, unexpectedly, without notice or care.  Some leave, some die a little piece at a time as we watch what once was become so very different.

When Marty had her first stroke in 2005 a piece of her died, a piece of the woman I met 35 years ago simply was no more.  When Marty had the second stroke eight months later, more of her died, more of Marty the woman was gone.  Marty was spark and fire, laughter and anger, loud, brash and unrelenting.  The first stroke was like a bucket of water on that fire, the remnants, the ashes were there, the heat and the light died. 

After the first stroke Marty had a different personality.  She was quiet, she was withdrawn, her emotions were flat, almost dull, she was different.  She didn’t initiate any conversations, she replied, she smiled some, but laughed little and the spark of anger that had been so much a part of Marty was gone.  Parts of Marty that had existed, parts of her that made her uniquely Marty were snuffed out by the brain hemorrhage. 

We, Marty’s family, all adapted.  We were afraid, we were angry, we were concerned, we were stupid, and we were in denial about the permanence of the changes.  It was up and down as we experienced surgery and recovery and another surgery and another recovery and finally a last surgery that left me exhausted, in despair and concerned about recovery.  Eventually we all found our place in Marty’s new life and accepted that parts of Marty were gone forever, that parts of her had died from the stroke.

The second stroke was devastating in its damage to her brain and took more of Marty’s light, more of her laugh, more of her intellect and curiosity and all of her independence.  What was once a person who prided themselves on being able to do for themselves, on being able to handle all things, could no longer take care of the simplest human needs.  Large pieces of Marty died the second time around.

Who survived was not Marty from years ago; it was not even Marty from a few months ago; the ravages to the already damaged brain were so much worse.  This time, in addition to the death of her personality and spontaneity we were all witnesses to the passing of so much of her cognitive ability, so much of her ability to reason, to remember and to communicate thoughts.  I mourned the loss of so much of her brain.

When you lose someone you love you grieve, you try and process the event, you get angry, you deny, you argue but, hopefully, you eventually get to acceptance, so you can eventually find closure and peace to move on to a new, but different life.  When you watch someone you love, someone who has loved you, die a little piece at a time it feels like a cruel cosmic practical joke.  You may get to acceptance of a different life, you never get to closure.  

It’s like you get to walk through the steps of loss every time something else dies.  Our family behaved classically, we went through all of those stages after the first stroke, missing so much of what Marty had been, fighting to accept what Marty had become.  We accepted and hoped, then we got to do it all over again.

I can’t speak for son Matt or daughter Erin but from time to time it pisses me off and I resent the living hell out of what has happened, but I don’t really know where to direct the anger and the resentment.  It’s not Marty, it’s not a system, it’s not a medical community, it’s an altered life, it’s an existence that seems to continually take away one more piece and erect one more barrier, it’s the disease.

I can’t really speak for Marty either, though I try.  I know from time to time the whole thing pisses her off too.  I know she hates the dependence, the loss of her privacy, the loss of her autonomy, the loss of her quick wit, the loss of her communication skills, the loss of her strength.  The strokes killed so many things she loved most about herself.  

They have taken so much of her, but not her courage to face another day.  The blessing is that there is another day and Marty has never been reluctant to face the day or the new challenges of the day.   Sometimes I am, sometimes I’m afraid to wake up and see what the new day brings, but what do you go but get up and stand beside the one you love the most.

I want to unequivocally state that I am forever grateful Marty survived the strokes; she is my hero and the most amazing person I know.  I am grateful she has continued to improve and gain even a minimal sense of who she was before the strokes.  I am grateful we have learned to live, I am grateful we have learned to accept, I am grateful we have become more of a couple, I think I fear the closure because to me closure is the end.

I’ve talked to Marty about all of this, the idea of parts of her whole, dying.  I’m not sure she agrees with me, she doesn’t want to use the “D” word about herself at all.  Me neither, but the feelings, the grief are very  real, I think it best describes what she has endured, what we, as a family have faced, learning to live with dying a little at a time.