Wednesday, November 23, 2011

Hummin' for Jesus

Our minister stands at the front of the sanctuary every Sunday.  He’s a tall man, thin, graying, in love with his work.   He reaches into the water of the baptismal  font, pulls hands dripping with water up and lets the water flow through his fingers back into the font and says, “Welcome home, children of God.”

For Marty and I, this place, this church,  has always been kind of home, a place populated with familiar and friendly faces, a place with recognizable comfortable beauty, a place that more often than not nurtured our souls, a place where we were able to guide and nurture others.

This was where I saw my children grow in spirit and in life.  This is where what I thought I knew of life was challenged and evolved.  This is where it was safe to think and to be.  This is where my children stood in front of our congregation and taught.  This is where tears ran down my face as another infant was baptized.  This is where my daughter was married and my marriage was restored.  It is, in so many ways, home.

Like many of the places we have called home over the years Marty’s wheelchair, her strokes, our age have impacted how often we were able to visit and how much we have been able to reconnect.  All too often we have been strangers in this home and the time gone by has brought change.

We no longer sit in the front left of the sanctuary, we always sat in the 2nd or 3rd row because we came in through the front door and that’s where the church youth sat and we rode herd on the kids.  We no longer know all of the faces in the congregation.  We no longer have young charges to sit behind and hush as they passed notes and squirmed and made kid noises; we no longer stand and sing the hymns we know by heart or stand to say the creeds.  We no longer sit in total reverent silence as the prayers are read, as the scripture is read, as the sermon is preached. (The whole reverent silence might be overstated just a bit, Marty was never that reverent or silent.)

Today we sit in the back to be as unobtrusive as possible and because the wheel chair ramp is closest to the back.  Today there are no young people sitting in front of us, today I sit beside Marty holding the hymnal for her as the congregation stands and sings, today in the quietest parts of the service instead of bowing our head in prayer, Marty hums, “MMM, MMM, MMM.”

I’ve gotten used to the humming; its part of what Marty does when she gets a little anxious, a little bored, a little self conscious.  It’s why we go to the movies in the afternoon, it’s why we don’t go to poetry readings (like we would anyway, sorry), it’s why we try and avoid the quiet moments, “MMM, MMM, MMM.”

We sat in the back as Jimmie, our minister, welcomed all of us and Marty hummed.  We listened as Jimmie led us through the liturgy and Marty hummed.  We listened as the scriptures were read and Marty hummed, we listened as the choir sang an anthem and Marty hummed, we listened to the sermon and Marty hummed, we watched the parade of little children come tumbling down the middle aisle to participate in the miracle that is baptism and Marty hummed.

It tends to make me a little anxious, I really don’t want to offend anyone or distract them from whatever is happening.  I hated it for the poor young woman who sat in front of us.  At one point in time I gently touched Marty on the knee to get her attention and distract her from the hum, she looked at me and said in her outdoor voice, “What?”  She’s not even aware she’s doing it.  Great job husband, let’s make it worse and call more attention to ourselves.

I finally just settled into the rhythm of the service, the rhythm of the day, the rhythm of the humming.  It was a change in our home, our church, our worship pattern; it was more of what we have become.  It was not the quiet, reverent praying, it was humming, it was humming as meditation, it was humming to fill the silence, it was humming as prayer, it was humming for Jesus.

We are an evolving species.  That evolution becomes clear and stark in the face of catastrophic events, i.e. strokes.  Survival requires not only recognition of this evolution but acceptance; we must embrace the change to survive.  

I need to sit in that church and hum along with Marty, after all, people hum when they meditate.  I need to let the humming focus me on the prayer, on the scripture, on the song, on the sermon.  I need to hum with Marty and accept this is where we are; I need to very simply hum for Jesus, just as Marty does.  Hopefully the people sitting around Marty will find a way to evolve too then we call all hum for God.

I like going to our church.  Marty likes seeing her friends there, we love our minister and he has helped both of us shape our world view and helped us cope with our journey.  Going requires acceptance, going requires effort to break from the inertia of not going, going is being back home with all of the other children of God.  I like being home.

Friday, November 11, 2011

Dancing at our Our Daughter's Wedding

I have never been a graceful man.  I always wanted to be, I have always wanted to move smoothly and nimbly with the grace of a well honed athlete.  Instead I tend to move with the grace and skill of a pack mule, strong and steady, not graceful.

When I was in the seventh grade everyone played, or tried to play all of the organized sports.  I played football and I really wanted to play basketball.   I wanted to move quickly and effortlessly to a spot, stop and spring up like a gazelle, shot the basketball and listen for the sound the leather makes as the ball drops almost silently through the nylon net.  I played a grand total to 60 seconds that entire year and in those scintillating 60 seconds I got two fouls.  The coaches encouraged me to focus on football.

As I got even older and more appreciative of physical grace I wanted to be able to dance.  I wanted to take a woman in my arms and expertly guide her around a floor in time and rhythm to the music without fouling other dancers.  I had the rhythm, or so I thought, I just didn’t have any finesse; it was a lot like my 60 second basketball career, but I forgot all of that, because somewhere in my soul lay the spirit of Gene Kelly.

I danced, I liked dancing, my dancing was mostly unfortunate.  I could box step with the mothers at the country club, I could bear hug and grind at the local youth hang out, The Happening, as garage bands played the Beatles. I could move back and forth to the beat of the music, but there was no grace to any of this movement.

When Marty and I got married we didn’t do a big reception and dance after the wedding so we were spared the traditional bride and groom dance.  I’m not sure when we first danced together but I suspect it was like all of the other times, I wasn’t skilled at leading, she wasn’t a follower.  Dancing without a good leader is like driving bumper cars; it can be kind of exciting but the collisions can leave a mark.

Somewhere along the slog of life I two-stepped, waltzed and line danced, it is Texas after all.  Marty and I went to dances when forced to and I mostly avoided dancing with other women for fear I would cause a major dance floor crash.  Marty and I struggled for control on the dance floor, she really seemed to do better with more skilled dancers she trusted, I pined for a smooth step.

By the time our son married Marty and I had mostly given up dancing.  We just didn’t do any boot scottin’ or anything like that.  It didn’t mean I didn’t want to be able to dance; I harbored a desire to take lessons, to really learn how to lead, to learn how to glide and move smoothly to the music.   Marty would have nothing to do with it. 

So we didn’t dance, we didn’t find a way to dance until it was almost too late.

This past January, five years to the month after Marty’s second stroke, our baby girl got married.  Baby girl Erin and I did the father daughter dance to John Denver’s “Annie’s Song”.  We twirled and whirled and to my knowledge her feet came out of the event relatively unscathed.  They don’t call me twinkle toes for nothing; actually no one calls me twinkle toes.

I watched as Erin danced with her new husband Lyle, I watched as my son and daughter-in-law danced, I watched as the father and mother of the groom danced, I watched as friends danced, as children danced, as my father danced, I watched and even danced once with the mother of the groom.

Marty sat in her chair and I can’t say I know what she thought of the dancing, or even if she thought of the dancing.  She stayed up late and watched as people hugged as they swayed as they slid across the dance floor to the different strains of music. 

I wish I could remember what the song was that got my attention.  It was something familiar, it was something slow, it was a song that made me remember, remember dancing with Marty a long time ago.   I was sitting with her and pulled her around to me and I asked her if she wanted to dance. 

Marty does not like to call attention to her new self at all.  She is very self conscious about her post stroke state, she doesn’t want people looking at her, staring at her or watching her at all.  I’m not sure if it was the wedding, all of the dancing, or the song, but she said, “Yes, take me out there.”

So out there we went, in front of God and everyone else, I spun her wheelchair around, put my hands on the front of her chair and started shuffling and pushing in time with the music.  I don’t remember who else, or if there was anyone else on the floor, but there we were, gliding across the floor, me finally getting to lead.

We made it through the whole song.  We danced, we laughed, we even managed to get cheek to cheek a couple of times.  It was good, it was meaningful, it was almost normal in a very abnormal time.  Marty smiled and just for a minute all of the self-consciousness melted away and we both simply enjoyed the moment, a moment together.  I don’t know if Marty and I will ever dance like that again.
Maybe, in its base form dancing is really nothing more than the coordinated movement between two people.  Maybe to dance one doesn’t have to waltz lightly on your feet or be as graceful as the guys on “Dancing with the Stars”.  If that’s the case Marty and I dance beautifully every day, as I help her move from chair to chair, as I slide the catheter down her throat, or as I roll her back and forth to help her get dressed.

I know I will never be graceful.  I will never glide across a basketball court stopping just short, jumping and shooting the basketball.  I will never smoothly guide my partner dipping and swaying on the dance floor feet barely touching the floor.  My body didn’t work that way when I was young, it damn sure doesn’t work that way with a little more age.  That’s okay, Marty and I will keep dancing in our own way and I don’t have to be particularly nimble to do it and I do get to lead, as long as I lead like Marty tells me.

Friday, November 4, 2011

Strokes Suck -- Forever

It doesn’t happen very often, but occasionally I look around, I think of Marty’s brokenness, I focus on what was and what is now and I get angry, I get pissed, I feel completely imprisoned by my life and I scream in my mind, “What the hell am I doing and how did I get here?”

I’m not proud of these moments, these feelings, but I can’t, I won’t deny them, they are very real, serious feelings that at infrequent times define me.  The anger, the feelings of profound frustration  are not focused on anyone, not me, not Marty, it is all about the disease, it is all about the results of the disease, it is all about the loss, it is all about the missed moments of my life with my wife.

Marty and I are at a stage in our life where we should be able to enjoy and reap the fruits of our years of labor and saving.  We have the financial means to do things, to enjoy things, to see things, to dance on the deck of ship, to drink wine in a valley, to see the masters at the Louvre, to wade in the ocean with our children and grandchildren.  The disease makes all of those things, those dreams, stay just that, dreams of the past.

The losses often seem endless and the barriers to do the simplest things seem insurmountable.  Almost everything is exponentially harder to do; getting up and going to church, having dinner out at a favorite restaurant, or going to visit friends is often so hard as to deter doing any of it.  Doing anything quickly or spontaneously just doesn’t happen, what we do requires advance plotting and planning to care for Marty’s needs.  You can’t just go anywhere because of the wheelchair or Marty’s limited capabilities.  What we do, when we do it is always constricted by this damn disease.

Then there is the isolation, the feeling of being alone in a fortress.   As someone who is comfortable with solitude I never thought I would feel isolated, alone.  I hate the feeling of being alone and it’s an unfortunate but a real part of caring for someone with a long-term, debilitating disease.  It just happens, the disease, the recovery from the disease, the caring for the sick becomes the obsession, focus and the driver of your life and you use the disease to help build a wall around your life to create a fortress.  There’s not enough bandwidth to deal with the outside world and what lies ahead.

How about what’s ahead, what the future holds?  I try and stay away from the future, it’s always too overwhelming.   The reality is that sooner or later the repercussions of the strokes will overwhelm Marty’s systems and take her away from me, take away my obsession.   Being alone, aging alone is part of the future I avoid.  Its part of what the anger is about, it’s the worst part of these strokes, the only way to be truly free of this disease, the only way for me to erase the disability, the only way for me to live a different life is for the love of my life, my wife, to be done.  Then I get to be old and completely alone, so yes, it pisses me off.

Then, like the cherry on the sundae, I hit myself with a little guilt for recognizing and railing about the curses of our lives.  It’s not right to be angry at loss when you have so much good in your life, it’s ungrateful, it’s self-pity, it’s whiney, it’s ignoring blessings, it’s unbecoming, uncool, and pathetic.  One shouldn’t just focus on the loss, one should only focus on what is good, that’s what the strong and stable do, they persevere, they march through the rain, smiling. 

I swear I know how fortunate I am to have had the time to become reacquainted with Marty.  I swear I understand the blessings of our marriage and how Marty has made me a better man, a better human.  I swear I know we are lucky to be able to live and carry on and see our grandchildren born.  I know we are blessed to have such a wonderful supporting family and cast of characters around us.  I got that, I really do, I still get mad as hell at the disease and its cost on Marty and me.

I do that a lot, recognizing our blessings, but occasionally, when I look around and see the couple walking down the sidewalk, or when I see a man and woman walk effortlessly into a diner, or when I see a couple gliding across a dance floor I mourn what was and will never be again.  Then, because it’s what we all do, because it’s how humans do it, I move on and say thank you God for keeping her here with me.