Hope -- More than a Town in Arkansas

Hope.  Hope is one of those words, over used, under understood.

I sort of think I get hope.  I think I understand hope and I’m pretty sure I recognize that without it life is, well hopeless.  Can you think of anything worse than being or living in abject hopelessness?  I can’t.

There are all kinds of hope.  There’s Bob Hope, the Cape of Good Hope, I hope you are well, my best hopes for you,  hope springs eternal and one of my faves, hope and change.  There’s I hope my parents are healthy, I hope my children are happy, I hope my grandchildren are safe, I hope our leaders are wise, I hope my wife is free of infection, I hope the next illness isn’t her last. 

Then there are hopes and prayers, for me, that’s the big one.  For me, hope is really nothing more, but nothing less, than a prayer, a prayer for the future; because hope is almost always about the trails we have yet to walk.

Marty, just by surviving the two strokes and a myriad of other bodily insults, has inspired hope in me.  Yes, I hope she stays healthy; I hope she continues, even ten years past the events, to improve, to get smarter, to get healthier, and to get stronger.   Mostly she simply lives and breathes and shows me that hope does spring from rather dark times.   

What Marty has taught me, what she lives every day is very real, very tangible hope.  She takes her own hopes and mine with her everywhere, every day.

Hope, and maybe a little bit of denial, is what sustained our family in the darkest days of our journey.  Hope is what I had when I looked at her broken body too close to death and whispered, don’t you leave me and she said, I’m not ready yet.  Hope is what she had, we had, as we came home and started a forever journey in recovery from the strokes.  Hope, sometimes, is all we or any of us have.

Hope is a new born baby, hope is a smile in the face of adversity, hope is starting anew or continuing an old trail, hope is at the bottom of the mountain and at the top, hope is for all time for all people.  Hope is what keeps all of us taking the next step, hope is how we battle fear, how we battle our own demons, hope is how the least of us continue their struggle to be the best of us.

When I look at my children and grand children I have hope for what lies ahead for them and for our family.  I am amazed at how smart, how dedicated, how loving, how strong they all are.  They will have trials, they have had trials, but they will move forward and carry my hopes, and their hopes forward through their lives.

I look at my bride, I see her as she is, I remember her as she was and I have hope, I believe in her, I believe in her life and our life, and I hope and know that love is there and we are better than okay.

Hope is not magical thinking.   Hope is a serious process about real things, future things.  Hope precedes action and action fulfills hope and all of that makes life worth living.

Death's a Bummer

It’s a familiar conversation.  It’s not new to either our talks or thoughts.  We have thought and talked about it before, maybe too much, maybe to the point of ridiculous, who knows.  It was a beautiful day outside so why not go outside and talk about death and dying.  Don’t you do that?

The home health nurse, a woman we have known for years because her son and our daughter were friends, brought it up in a recent visit.  She is a familiar face; certainly the topic of dying wishes is a familiar topic.  She wanted to know, we needed to decide, what do we want, what does Marty want if, God forbid, IT happens.

I told the nurse we knew, I told her we had already done the whole DNR thing at the hospital, I told her I had the medical power of attorney and Marty and I had had THE talk.  She said we needed to talk some more.  

So once again, we played the whole, let’s pretend you stopped breathing game.  Oh boy, fun times at the Kinards house. 

 

The weir d thing is, somehow, some way it seems different, the whole let me die thing, when you are at home, as opposed to being in the hospital.  I really really didn’t like saying, “Sure, don’t make her heart start beating again” when we were in the hospital.  

It’s exponentially harder and cuts more to the bone for me to say “let her die” when we are in our home, a home we have had for almost 30 years.  It feels different, in our home it feels more like quitting than it does in a medical setting.

We talked.  It was a lovely day outside so why not talk about dying.  It was like spring, the sun was warm on my face, it was relatively quiet, and the wind wasn’t blowing, so why not visit about how you want to be treated in a near death situation.

Marty is almost always game for the discussion, she never really shies away from confronting her own mortality and she has never, not one time, not one scintilla waivered about what she wants.  She very simply does not want to be restarted, she doesn’t want heroic measure, she doesn’t want tubes down her nose, her throat and in her body, she wants to move on when that moment arrives.

I know, without a doubt, without any equivocation what Marty’s wishes are about all of this.  The question has never been knowing, the question has and always will be my own courage to step back and let her go.  I can talk about it, I can talk a really strong game, I can say, “Sure, you bet, whatever you want.”  

Can I do it, can I let go, can I be strong enough, can I be certain enough, can I be resolved enough to be what Marty wants me to be?  The truth is, I don’t know, everything is a theory until you are confronted with real life.

I don’t know about this whole dying thing.  I know people who are convinced that there is more existence after life.  I don’t know if I’m there, I envy that certainty.   I wish death didn’t seem so dark to me, but it does and I don’t know if I can simply watch my passion pass on without fighting one more time, I simply don’t know.

What does make me feel better is what Marty told my some years ago  in one of our many conversations about living and dying.   I asked Marty if she was afraid of dying, if she worried about it at all.  She said of course she worries about it, and then she looked me straight in the eye, broken brain and all and said, “But really, I think that dying is just another way of being.”

That makes her feel better, and guess what; I’m going to go with her on this.  

I hate the conversation a lot more than she does.  She knows, and I know this is talk that needs to happen.  You should do it too.

If Your Happy and You Know It.....Good for You

I get, I understand happy.  I’m largely a happy person, always have been, I like happy.  The odd thing is, at times, every now and then, occasionally, I feel a little guilty feeling happy. 

As dumb as that is, it’s a real thing for me.

I remember at one point sitting somewhere, eating, talking, hanging with my children while Marty was still in the ICU at Zale Lipshy Hospital in Dallas after her first stroke.  Marty was lying in her high tech hospital bed with tubes in her nose, her throat and her head while being fed food through a tube and given IV drugs to keep her asleep so she wouldn’t buck against the daily assaults on her body.  Keeping someone alive can be an awesome and awful thing.

Anyway, we were sitting, talking, hanging and someone said something funny and I laughed for just a moment. I don’t remember what or who said something funny but the moment caught up with me, life seemed normal for a fleeting moment and I laughed, I found happy, and then I caught myself. 

My happy seemed like a direct affront to my bride who was lying in a bed with a tenuous hold on life.  How could I, if I was true, if my sadness over Marty’s aneurysm, if my fear for Marty’s life was true, how could I laugh. 

I quit laughing.  For longer than was smart.

The whole thing, caring for Marty, watching her suffer, watching pieces of her die was so overwhelmingly awful it pushed out virtually all emotions except for fear, anger and sadness…..and guilt for those odd times when happiness or laughter occurred.  It took months, really years to get to the point where other real and better emotions such as love, gratitude and happiness could be real again.  It took work, thought, self awareness, effort and most importantly adaptation to move past the self pity and angst of our situation.

I have since discovered that happiness does not require an ideal life, it does not require an easy life, it does not require perfection.  Happiness simply requires effort and permission, permission from you for you to enjoy what fruits of life are there.

Man that’s high tone talk about someone who is healthy .  It's because I've been married to Psychologist all of these years.  Think about how hard it is to find happiness if you are the Psychologist in the bed is the stroke patient.

When I ask Marty if she is happy her first and immediate response is almost always, “No.”  Not a lot of detail, not a lot of nuance, it’s just, “No.”  But, give her a few beats, and on most days, almost always, she will think and then say,”Yes, some times.”

I think that’s the real truth.  “No,” she says, “I shouldn’t feel happy.  Life has hit me hard, life, living has taken too much of me away for me to be happy, there is no friggin way I’m going to say I’m happy and it’s pretty damn stupid of you to even ask or think I could be happy.  What the hell is wrong with your pee brain?”  That’s what I imagine she thinks, she really just says no.

But then it hits her, as it hits me, there are a lot, I mean a lot of happy things in our lives.  First and foremost we are both still here, with each other, enjoying each other and yes laughing with each other.  Marty hasn’t had a serious illness in well over a year (knock on wood) and she has me, bubbly little ol me to take care of her.  Bubbly little ol me has Nykkie, Erica, Renea and LaShonda to help, we have amazing children and family to support and love us and we have the means to live life in a reasonably comfortable manner in spite of all the wounds of life. 

It would be wrong, wrong, and wrong again not to claim happiness, even if I am required, through my own psychosis, to feel guilty about it from time to time.

It took time to get over the shock of the events in our lives.   It took time and learning to get past some, but never all of the fear and anger, it took time and effort and a very conscious effort (pat myself on the back) to leave the idea of a daily funeral for Marty, the idea that Marty was always on deaths door. 

Happiness does not always occur naturally, sometimes it takes effort, sometimes it takes thought, and sometimes it takes accepting the guilt associated with it. 

Me, I accept happiness and I expect the occasional feelings of guilt that come with it.  It just is.

And God Smiled (Revisited)

I wrote this several years ago.....it is one of my favorite moments in our journey

I play at golf.  I have no faith in my game.  I hit the ball all over the place and when I address the ball I never know if the good Larry or the evil Larry is going to hit the ball.  Lately, my golf game is kind of a metaphor for my religious views.

I continue to play golf in spite of the evil Larry because when the good Larry stands at the ball, takes a back swing and hits the golf ball on the sweet spot of the club and the ball rises and goes straight and true and long, it is a wonderful feeling.  It is why I play golf, eternal hope that the good Larry will prevail more than the evil, chili-dipping, shanking, slicing Larry.  It’s the same with my faith, I try to be eternally optimistic that I’m going to believe as I should believe.

I identify as a Christian because that’s how I was raised and that’s what I want to believe.  I struggle with my belief or more accurately my unbelief.  Not every day, because I don’t think about it every day, I struggle on the days I think about what I just cannot believe.  I have often wondered if I am Christian enough because I have doubts about the Bible, Immaculate Conception, the Holy Ghost and a litany of other beliefs.  But, sometimes, events occur that shine a light on the importance of my doubts. 

On Christmas day Marty and I sat in our van in the parking lot of 1^st Presbyterian Church in Waco, our church of 20 years.  It was misting, it was cool, it was overcast and there were only about three other cars in the parking lot.  I looked across the street at the building that is our church and remembered the past, flashed on the events of our lives that revolved around the church and wondered how we fit into this place that has always been such a prominent part of our personal history.

Marty and I were sans caregiver today so I moved her wheelchair to the lift and down she went into the damp parking lot.  We scurried across a sleepy street, up the ramp to the church and the heavy wooden doors came open, opened by a familiar face welcoming us to our church.  

Church services on Christmas day are sparsely attended because of all of the family functions and the fat man with the beard.  It’s a toned down affair where everyone sits at the front for the abbreviated service.  Our minister, Jimmie, was dressed, not in his normal robes but jeans and a plaid pull-over hoody. 

He greeted Marty and I warmly and helped me situate Marty in our pew, the pew we sat in for Erin’s wedding, the pew that had been moved over to accommodate a wheelchair, the pew our children sat in Sunday after Sunday while Marty and I sat behind them.  

The small crowd settled into their spots around us as Jimmie dipped his hands into the waters of the baptismal font and said, “Welcome home children of God.”  There we were, Marty in her wheelchair, me dressed in doubt.

I knew this was going to be a little different service as Becky, the organist, sat at the grand piano right in front of us and began playing “Go Tell it on the Mountain.”  Marty and her women’s chorus rocked this gospel tune many times; it’s a toe-tapper.  Becky was bobbing her head and weaving as she played.  Presbyterians, being the frozen chosen, don’t often bob and weave in a church service.

As the service progressed we said prayers and began singing a Christmas carol.  Marty loved to sing but doesn’t sing very much anymore.  The strokes affected her vocal control and she can’t maintain her pitch very well and she doesn’t like that.  But, there she sat, in our pew, singing “Hark the Herald Angels Sing” just as surely and loudly as the rest of us.  I looked up at Jimmie standing behind the pulpit singing, watching Marty singing, and I remembered why I loved being there, it wasn’t about my belief or unbelief, it was about our belonging to a community of doubters and believers.

We moved through the rest of the service praying, singing and listening, then as the service came to an end Jimmie and his sidekick DeDe came down from the chancel area to stand between the pews and deliver the charge and the benediction.  The charge is the same every week, I have heard it, Marty has heard it hundreds of times, it is part of the service Marty knows and loves.  It is part of the service that carries great meaning for me.

As Jimmie walked past the baptismal font he once again dipped his hands in the water, shook them off, walked up to Marty and put his hands on her face, connecting Marty to him, connecting Marty to our past, cementing Marty to our faith in a loving God.

Jimmie stood and started the charge, “Go out into the world in peace.”  

Marty, surprisingly, without hesitation, without embarrassment or self-consciousness said, in full voice for all to hear “Have courage.”  

Jimmie looked at Marty and continued with the litany, “hold on to what is good,” and Marty replied “return no evil for evil.”

Jimmie then walked up to Marty, bent over and wrapped his arms around her shoulders and together, with her broken memory responding and his gentle reminders, they continued and completed the charge to all Christians, to all people of faith, even those like me who doubt their own belief, “Strengthen the faint-hearted, support the weak and help the suffering, honor all people, love and serve the Lord, rejoicing in the power of the Holy Spirit.”

DeDe, the young woman minister assisting Jimmie that Christmas day struggled with her tears, and closed the service with the Benediction.  I sat there and struggled to tamp down my own tears as I felt Marty’s action bring a sense of peace on this day for all who were there.  It was no longer about my doubts or my faith.

Marty and I went back out the doors of the church, through the heavy mist and across the still deserted road.  I put Marty on the lift and in the van and got her locked down in the van, forgetting about my doubts, not worrying at all about what I didn’t believe.  Through Marty’s unrelenting courage to recover and Jimmie’s recognition of God’s grace through Marty,  I remembered, it’s not about what I don’t understand or struggle over, it’s about what God does and I believe God smiled at us that day through my wife.

Do It Again

She does it a lot.  You reach down, Marty turns her cheek to you, you kiss it, and she says, “Do it again”.  You kiss her cheek again, she says, “Do it again”.  This repeats four maybe five times, so always be prepared, Marty digs being loved.

That wasn’t always the case; she struggled with feeling loved, with feeling worthy of love.  Marty wasn’t ever sure she deserved the love and affection of those around her, more important; too often she didn’t feel very lovable.

That has changed.

She likes to be hugged, she likes to be kissed, she likes for you to hold her hand, touch her arm, rest your hand on her shoulder, she loves affection.  Mostly she loves knowing she is loved and she eagerly accepts that love and the affection that comes with it.

Marty can still be kind of ornery and occasionally the old tart, acerbic Marty arises.  Like, when she told me that my shaggy hair and shorts and sweat shirt were just a little bit of an embarrassment to her.  But, on the whole, I would call her sweet, loving and someone who loves to be loved and is not shy about saying give me some more.

All of us, at times, struggle with the idea of accepting love, accepting care; even from someone we know loves us.  Marty was/is not alone in that.  We don’t feel worthy of another’s sacrifice, we don’t feel we deserve adulation or praise or affection.  We have that voice in our head rattling around telling us, “You are not worthy, this other person’s love is more than I deserve, I’ve done nothing to cash in such a rich reward. “

Marty felt that, it made her angry, it made her sad, it was frustrating.  Not anymore.  Today, in our new normal, she gets it.  She no longer thinks about being worth loving, she doesn’t run all of the negative around in her head, that would be too hard, she simply says, “Do it again” with a level of assurance and expectation that you are going to kiss her cheek as many times as she asks and that it is okay, it is perfect for her to ask, again and again and again.

I attended some business training years ago that focused, to a small degree, on accepting compliments, accepting nice things people would say to you.  We learn early in life to be humble and too often we take our humility to absurd levels, not accepting kindness, not accepting good things; we must pass on kindness from others if we ourselves are good.  We need to learn to accept those kindnesses and simply say thank you, accept the words, accept the love.

The Marty of today knows, she absolutely knows she is loved and I think she finally believes she is lovable, worthy and deserving of my love, of our children’s love, of our family’s love, of our friends' love.  She gets it, she understands that we can never particularly deserve another’s love and affection, we can never earn that greatest of things through our actions. 

Love, the love of other people, the love of God is given freely, it is not earned, we don’t necessarily deserve the love of others, it is the greatest of things, it is the penultimate gift we give and receive. 

When it’s offered we simply have to accept it; we simply have to say, “Do it again.”

Superman and Heaven, Wisdom from Marty

Spoiler alert on a couple of fronts….If you plan on seeing Batman VS  Superman as it comes out on DVD or HBO and want to be surprised by the end of this less than inspiring movie, stop reading……I’m going to tell you how it ends.

And, if you are planning on dying at any time in your life, I have another spoiler. Both of these come from the all knowing sage, Marty.

First, the Superman thing. 

The Batman vs. Superman movie was pretty well savaged by the movie critics, they weren’t all wrong, it was kind of hard to follow.  We actually kind of liked the movie, but I like film, except the Magic Mike movies, both of them were a special kind of bad.

Superman VS Batman was overly long and chaotic and too visually dark especially if you have to sit up close like we do in the wheel chair section, note to theaters, give us a break please.  But, it was a movie, there was popcorn involved and it was fine, light afternoon entertainment, until the ending.

Here’s the spoiler, Superman dies and is buried at the end (theoretically).  I mean how can that be?  He’s indestructible, he can fly, he can do anything and these morons kill him?  Really?

I grew up a huge, huge Superman fan.  Bought and read all of the comics and watched the old George Reeves version on TV when I was somewhere you could get that station.  I ran around the neighborhood with a towel pinned around my neck flying and jumping off of some really high things until I figured the bath towel was only going to hang me if I didn’t quit. 

I was a pre-adolescent Superman apprentice so naturally I was affected by Superman’s untimely demise.  In fact I’m still a bit shocked, not Trump is our new president shocked, but Superman is dead shocked.

After the film, I sat in the movie darkness next to Marty as the credits were rolling by and with a heavy heart and deep sigh I said to Marty, “I can’t believe they killed off Superman, how can you kill Superman, how can Superman be really dead?”

Marty who was a little bored with the chaos on the screen looked up from her Diet Coke and said with a voice that sounded just like an impatient mother soothing their 10 years olds angst , or a bored partner impatient with her spouses idiocy,  “Ging (the shortened version of a nickname), don’t worry, it’s only a movie.”

Yea, I know, only a movie.  It’s not like I believed in Superman or anything but I wore a bath towel around my neck and jumped from roofs and they killed the man, they killed Superman.  Thanks Marty, I know it’s only a movie, geez….

Then there’s the whole dying and waking up in heaven after life thing.  Marty is a strong believer in the heaven after life thing.  She hasn’t always been there, but she is now.  Almost dying several times can give you a different perspective on this kind of thing.

We were driving down the highway one day talking about stuff and she told me she really believes that she will see her Mom and Dad again someday.  She knows her Mom is in heaven and mostly believes her Dad made it there too.

Remarkably, she believes I’m going to be allowed in her heaven too, with one caveat, she says I will be a lot nicer and not near as bossy.  She doesn’t really much like that whole bossy thing, never did from anyone which is why she is not 100% on her own Pop being in heaven. 

So, there you have it.  A super hero is dead but it’s only a movie and Marty’s apparently bossy grouchy husband will have a free ticket to the good place. 

Hope to see you all there, a long time from now.  You might not recognize me because I will be so much nicer.  I’ll be the guy with the towel pinned around his neck talking to Superman, and of course Marty.

Stripping Down

Two weeks ago I went to Dallas to see number one Grandson play soccer and then I took him to Toys R Us to shop for his birthday.  Marty didn’t go, Marty couldn’t go, it was a fast trip and there was really no way to get her wheelchair to the soccer field.  I don’t know if she really wanted to go, but I went alone wondering if I should have found a way to accommodate her.

Last week we took furniture to our daughter in Dallas in Marty’s new van.  I was amazed at how much stuff we got in the van.  Marty and I were having dinner and I asked her if she wanted to go and she said yes.  I then talked about trying to get all of that stuff in the van and how tight it would be.  Marty looked at me and said, “Do you have room for me?”

 

Of course I will always make room for her, that’s exactly what I told her, but that's not always the simple truth.

Sometimes to survive you have to simplify, you have to find the bare essentials and strip life down to the basics.  That’s what we had to do in our lives to cope with Marty’s stroke, that’s where I took us, thinking, believing we needed to focus inward to survive.

With Marty, when we came home, it was all about survival, hers and mine. Simply staying alive and mentally stable took all of our energy and efforts and even then we sometimes came up short.

 Recovery from a stroke takes a tremendous amount of energy and focus.  Everything is hard and exhausting.  Thinking, talking, eating, and breathing, basic living skills all require enormous amounts of concentration, calories, and focus.  The extras in life like relationships, work and play are shoved to the back of the closet until you can move out of survival mode.  (See Maslow’s hierarchy of needs….we start with survival)

There are a lot of problems with this whole stripping down thing, like,  you get really tired of looking at yourself naked, you see way too many of your own flaws.  You end up pushing too much in the closet, you get too internal and too focused on just living and you forget that the world outside your sphere still exists and still matters. 

You know, or you think the stripping down is temporary, but it soon becomes an integral part of your life that seems permanent.  You know in the back of your brain that sooner or later you have to start adding elements of life back in and that can be scary, a little daunting.   Reincorporating yourself back into the ebb and flow of life is hard.

The truth is if you step out of the main stream, eventually you get left behind; other people evolve and move on without you.  It only makes sense because the stream, the river is still running, with or without you.  The boat really does leave you where you stepped off and you don’t get the benefit of gently floating down a creek and seeing the same sights as the rest of the world as a leveling experience, you have to get back on where everybody else already is and that is frightening.

And, bringing Marty up to speed adds a real level of complexity and difficulty.  I want her to be part of life, I want her to be able to re engage, but the truth is, on so many levels, she simply can’t, she doesn’t have the physical, mental or emotional bandwidth to do it and I find myself, too often, leaving her sitting on the bank and watching as I start putting my toes back in the water.

It makes me feel horribly guilty.

I will always have room for her, I will leave stuff on the side of the road to make room for her, I hate that she even asked the question, “Do you have room for me?” 

It’s one of those care giving issues.  It’s an issue of caring for yourself and making sure that the cared for are present, are literally cared for, are noticed and are part of the flow of life. 

That’s not always easy, in fact, it’s very rarely easy, but nobody said it would be.  They did say it would be worth it, for once they were right.