Wednesday, December 25, 2013

Come All Ye Faithful

Here we are living life on the edge this Christmas of 2013.  That’s just the way Marty and I roll, taking chances, risking the comfort of hearth and home to find the ever elusive peace and good will.

Yea, that’s right, we did it, we did it in the face of everything, we went to church in cold and flu season.  We hugged people, we touched people, we exposed ourselves to germs, and then we sterilized.  It was good.

A Christmas Eve service at First Presbyterian in Waco has always been one of Marty’s favorite places to be during the holiday season.  She loved the sights, the sounds, the smells, the people, the familiarity, the carols, the music, the whole magilla.  The strokes have not robbed her of this.

It’s a crowded service, if you want a primo spot you have to be there early, and when I say primo spot I’m saying one of the pews that will accommodate a wheelchair.  We got there about an hour before the concert which precedes the actual service.  There we sat, Marty in her black and red Christmas vest, me and our trusty caregiver, Nykkie, guarding our rear position in the sanctuary, watching familiar faces file in and find seats.

Before the strokes, my job on this night of all nights was to take number one and only son, Matt, to the church early and save seats for the consistently late Marty. 

I must say for posterity’s sake, I hate saving seats.  It involves telling people “no you can’t sit here” and disappointing perfect strangers and friends.  I did it anyway, it got me there early and Marty could come when ready and we could avoid the inevitable conflict of punctuality.  

I don’t do that anymore.  For one, Marty brings her seat in the form of her wheelchair, for two, I’m now in charge of getting her ready and out the door so we are painfully early and there is not conflict.  The one perk of being a caregiver is you get to set the schedule.  Now we just have to kill an hour watching and greeting old friends and their families and playing games on our smart phones.

The service is full of music and a lot of singing familiar Christmas carols.  All of the standards, most of which we can sing without the help of a hymnal, most of which evoke feelings of Christmas’ today and past, a good nostalgia a good centering of the present.

As is my habit, much to Marty’s chagrin (she told me once during the service, “Just leave me alone”.  Oddly it warmed my heart) I keep a close eye on Marty.  She is feeling good in spite of a treated UTI.  She is sitting, head up attentive, engaged, watching people, listening and looking and really basking in the warmth of this familiar setting.

The trumpet starts, “Oh come all ye faithful”, the congregation stands and begins to sing and fills the sanctuary with music, singing in unison, singing louder than a normal hymn.  There is a palpable sense of community and commonality as the voices build, as the carol progresses, “Joyful and Triumphant, O Come ye, O come ye to Bethlehem.”  

I look to my left at Marty at sitting in her wheelchair.  She is looking at me, watching me, but singing, every word, “come and behold Him, born the King of angels, oh come let us adore him.”

And there it was, that was why we were living life on the edge, why we risked the germ factory that is any large group of people, to be with our larger group of people, to feel part of something, to feel the familiar, to feel a sense of continuity, to feel what we as humans crave, life as part of something bigger.

To the well, to the able bodied, to the sick, to the infirmed, to the challenged, being a part of a community, whatever that community might be is the great the common denominator that connects us all in spite of our very real differences.  We want to be a part of life and that church on that night with those people with those songs, that is our community, our faith, our belonging.

We sang in spite of the faux danger, we went to church, we hugged and touched others because living without that community, living without the song is not really living, at least for us. 

Tuesday, November 19, 2013

Spending Energy

It’s about the choices, it’s about priorities it’s about how you want to spend energy.

One of the things you discover about stroke recovery is that energy, both physical and mental is a finite resource.  It takes a lot of Marty’s energy to get up, to sit up, to focus, to talk, to think, to socialize.  It’s my job, or at least I think it’s my job, to figure out how to divvy up those resources.

We lived in Hillsboro, about 45 minutes north of our current home, for seven years in the 80’s.  Hillsboro is a small town of about 6000 soul’s right on the main north south corridor between Austin and Dallas.  We loved living in that town.

While there we were part of a supper club that met once a month, sort of progressive meal one night a month.  It was a time when everyone competed for and hired babysitters as we all were in a 30s and it was a time for adult communion.

Going to this party was important for Marty, she really wanted to go, she really wanted to be a part of this event, she really wanted to see her friends and be a part of something somewhat normal.  

We choose to go, I choose to limit the time there, I chose to go for only the first part, to see friends, to visit a bit and then beat it back to Waco.  I chose to conserve some of Marty’s resource, bless her, Marty agreed.

Marty and I had a pleasant drive back to Waco and the experience of coming together with old friends was good for both of us and I think really positive for all of those people who had not seen the new Marty.  I was pleasantly surprised at the people who came and sat with Marty and actually talked to her. I was pleased that Marty found a way to spend some of her energy interacting with friends.

As we drove off I asked Marty how she felt about the whole thing, “Good, I never felt left out.”

There it is.  My ever present worry, Marty feeling left out, Marty being left out.  It haunts me.  

I try to make sure Marty is included.  Our family works hard at making Marty a part of any celebration.  I don’t want her to feel left out, I don’t want her to be left out, but the plain and simple truth is Marty can’t do everything; she doesn’t have the capability or the stamina.  We have to make choices.

I guard Marty’s energy stores like an over protective father guards his daughter’s virtue.  I don’t want her to be physically or mentally exhausted; I don’t want exhaustion to compromise her health.  I worry that I sometimes guard it too closely and don’t allow her to stretch, that I keep her from doing too many things, that I make too many choices reducing her involvement in life.  I worry that I guard her for my benefit and not hers.

So far this month we had the party in Hillsboro and we went to the wedding of our niece in Arlington.  We still have the wedding of a close family friend in Austin and the pending chaos of the holidays and of course if you throw in my colonoscopy we have a pretty busy, energy sapping calendar.  (Marty thinks I should live blog the colonoscopy starting with the prep…..maybe not.)

We went to the party in Hillsboro because we both really wanted to see old friends.  It was a good decision to go and we only went for the first part, which was the compromise.  Go, but don’t stay too long.  Marty was really tired from going but I know we spent the energy wisely.

We went to the wedding of my niece.  Of course we did, she is my oldest niece, all of our grandchildren were in the wedding and Marty always had a special place in her heart for Liz.  The bride was lovely, my grands were gorgeous and the four year old ring bearer approved of the whole thing by giving a big old thumbs up to the bride as he presented the rings.

It was a long day for Marty and it wore her out mentally and physically.  I believe we spent wisely.  We made the right choice.

The plan is for her to skip the next wedding in Austin and stay at our home with two of the grandchildren.  It’s not a slam dunk choice either, Marty J always loved her some David D and missing his wedding is not ideal.  It’s a choice, a choice she generally agrees with, a choice I made based on what I think is best for her.  

Next we have Thanksgiving coming up and my whole clan will gather at our lake house on Thanksgiving to give thanks, to eat, to commune and of course to watch a little football.  

On that day we will make more choices, we will decide when Marty comes in to the gathering and how long she stays.  I will make choices for Marty that day, choices I hope suit her, choices I hope are made for her sake, for her strength, for her health.  

I fear I sometimes make those decisions based on what I want and what is easier for me.  I hope the choices I make are not so self-serving.  It’s really hard to know, it’s hard to separate the self from these types of decisions.

I am lucky that Marty trusts me, we are lucky we still have choices.  Marty used to rag on me because I would spend too much time trying to make the “right” decision about things, paralysis by analysis.  I do tend to cogitate too much trying to get it “right”.  I don’t know if right really enters into the process, I just want to do things for the right reasons.

It really comes down to spending limited resources in the best places you can, that’s what being sick does to you.

Thursday, October 31, 2013

Starting a New Journey

The journey to acceptance of difference starts with simple presence, it starts with familiarity, it starts with understanding.  Marty and I started that process with young people who matter to us.

I taught Sunday school for several years.  From the time our son Matt was in high school until daughter Erin graduated I taught their Sunday school classes.  It was the best way to ensure that the three of us got up and went to church, it seemed right.

In those years of teaching I rarely went long without being taught, without learning more about my own faith than I could ever impart to 15 year olds who mostly came for the donuts.

It’s still the same, the more I think I know, the more I want to educate, the more I find out from those around me.  

After Marty and I had met with the youth of our church I walked out of the church refreshed, optimistic and feeling renewed.  Marty had risen above her natural self consciousness and apprehension and had listened and talked.  She was involved, funny and, well, Marty, confined yet not defined by her circumstance.  
Those kids listened, they turned their young minds to us, they paid attention, and more importantly they moved beyond the tendency of focusing on self.  They focused on Marty and her life and I think they got to know her just a little; they got to know Marty as I know her.

I don’t know if they heard everything I was saying, it doesn’t matter if they heard everything, they clearly heard some things and they were attentive to Marty and maybe, just a little, tried to get into her head and her life.

We talked about Marty; we talked about our life, our old normal, our new normal, our faith, and our lack thereof, or more precisely, my lack thereof.   Marty has never wavered in her faith in a higher power, in fact, her faith has only gotten stronger.  She was always stronger than me.

I pointed out to these young minds how they are connected to Marty and how Marty is forever connected to our church, the people in the church and in particular the young people in our church.  I told them about Marty’s work with the youth program and how the program was stronger and how Marty was stronger for her efforts.  

I talked about Marty and how serious she took her commitments and that one of those commitments was to our children and the children our church.  I talked about how important the baptismal promise was to Marty, that when she committed to helping them with their faith at their baptism, she meant it and that was part of why she was committed to the youth that came before them and why, even interrupted, she was committed to the young people who were in the room with her that night. 

They listened politely with very few yawns and no cell phones, they listened.  They asked questions, they asked good questions, they asked questions about feelings and faith, they asked questions about doubt and anger, they asked questions about simple living and dealing with fear and dying.  They were good questions that they directed not just at me but at Marty…..and of course Marty rose to the occasion and answered.

At the end they all wrote affirmations, small notes on small cards for Marty, for me, small words of encouragement and wisdom from those so young.  It’s a ritual of our youth program and other youth programs that you leave these meetings with words of faith, love and encouragement.  I’ve felt the love of young people before, it’s still there, it’s still powerful, it still means a lot.
The affirmations expressed kindness, empathy and a very simple wisdom, an understanding of what makes a whole person.  One was a drawing, a simple drawing that very neatly captured what we all want to believe about ourselves.  

We started our journey with these young fertile minds that Sunday evening.  Any journey starts with steps, this one started with being in each other’s presence and listening and talking and learning. 
I am moved by the openness, I am a captive of the compassion of those so young.  It is encouraging for our life.

Friday, October 18, 2013

More Than Meets the Eye

The perspective changed when she sat in the wheelchair.  It changed the way people saw her, the way people knew her.  For some, even those that had known Marty forever, they couldn’t see past the chair, they couldn’t accept Marty in her brokenness.  

I hope we change some of that.

This Sunday Marty and I are going to visit with our church’s youth group.  We are going to talk about our life, we are going to talk about our life before the chair, and we are going to talk about our life after the chair.  

Marty’s fingerprints are all over the youth suite where we will meet.  She was intimately involved with Christian education in our church and with growing and fostering the youth group.  She loved the kids.

I hope before we leave they will see Marty as the person she was and the person she still is, I hope they understand her connection to them and I hope they move from defining her by her disability.    I hope these young minds can see Marty as more than a strange empty vessel in a wheelchair.

Somehow, some way, I want to humanize Marty for these kids, and I want them to know her for her courage and her love.  Somehow, some way, I want them to lose their fear of her, to forget for a few minutes their discomfort, to listen to her, to touch her to understand that they are part of her legacy.

They need to understand that they are connected to this woman in ways they don’t know because she got sick before most of them were old enough to know her contributions to their lives.  They need to know that Marty worked hard to make the youth program at First Presbyterian count, that she worked hours and gave of herself so that the young people of our church would have a place to be, a place to be young, a place to be free to say and feel their doubts and express their fear and their joy.  

I think it’s important they know Marty sat in the sanctuary when some of them were baptized.  I want to remind them that she promised, as we all do at that sacramental moment in our church, to help them in their faith journey and that she promised to be a part of their lives as children of God.  

I want them to understand that the strokes have made Marty self-conscious and it is really hard for her to be in front of people, she’s afraid of the staring; she’s uncomfortable with the judgment. 
I want them to know that she pushed past those fears because she believes in living her own baptism and fulfilling the promise she made years ago to God, to them and to the others who she saw baptized.  I want them to understand that part of her life today is to foster love for those who are hard to love.  I want them to know that even though they were too young to see Marty’s work, her dedication, her past has affected their present.

I don’t want them to look at Marty or any others in her situation and simply focus on the disability, to see nothing but the chair or the broken body.  I want them to understand her current abilities and see that she is much more than what she can’t do and that when you take the time to know her you discover her personality and her essence and that those things remain amazing.  

I want them to see and know just a little of the Marty that I know.  I also want them to know that part of their obligation, part of their journey is to try and reach out to the least among us and that part of the way they live out their own faith and baptism is to look past a wheelchair and start to see the person, the real person sitting in the chair.

And from there it’s simple, just reach out and touch them.