The next day, my Facebook status read:

Photo taken from Kat's room at Mission Hospital April 2, 2011

We were in the hospital with Kat with no idea what was wrong. By this point we only knew that we didn’t know anything for sure. The doctors were telling us that it could be cancer, but it also could be something else entirely. We were unaware that we were just beginning a journey that would reinforce over and over how little we really understood. Desperately seeking help, we hit walls again and again. Baby steps forward and baby steps backward.

Before I get personal, I feel the need for a reminder that this blog is about me, my ideas, my feelings, my journey through life.  I don’t in any way mean to say this journey with Kat has been all about me. It is just that my skin is where I live and this is the story as seen from within that skin.

This journey and others throughout the last year have been the hardest of my life. It has been taxing physically, mentally, emotionally, spiritually and financially. I have faced fears about life and death, love and rejection, embrace and abandonment. I have experienced fear, despair, sadness, disappointment, anger, frustration, loneliness, judgement, gladness, surprise, amazement, joy, grace and peace.  And each of those descriptive words has countless stories behind them.

On this auspicious anniversary, a few events stick in my memory…

• The awful night of that call on April 1st. The love, concern and support that we felt during the drive there.
• The horrible way the doctor first told us he suspected she had cancer and the uncaring way he simply dropped Kat as a patient.
• The way Karyn cared for Kat so sweetly in Asheville.
• John and Tracy dropping everything in their lives to come and be with us in Asheville.
• Getting to witness Jeanie as she used her super powers to get Kat in to see Dr. Batchelor so quickly.
• The healing compassion of Dr. Batchelor.
• The night in the Emergency Dept when Kat’s pain was so bad and the pain meds were not helping. It was so bad that I had to excuse myself from the room because I could not stand it any longer. I felt  bad for abandoning her, but I knew that I would be physically sick if I remained.
• The awful pain Kat felt from the potholes on I-85 between here and Duke and how impossible it was to avoid them.
• The temperature extremes we endured to keep Kat as comfortable as possible.
• The despair that day in June when we almost gave up.
• The call from Dr. Batchelor on his day off from his home phone giving us a renewed hope (on that day we almost gave up).
• The day we received the final diagnosis of PNET.
• Friends and neighbors who so generously helped carry Kat up the stairs in her wheelchair.
• The angel who pays Kat’s apartment rent every month!
• The amazing change for the better when Kat began chemotherapy
• The F–k Cancer (and Y–k Cancer) ball caps Danae made for Kat and her sisters
• The day Kat “tried the stairs” to see how high she could get. I was in the other room and she called out to me that she needed my help. when I ran into the room, she was at the top. What she “needed” was for me to bring her bag to her. We never again had to carry her up the stairs.
• The “race” between Kat and Erin in the hospital after her surgery.
• Kat’s first time “sneaking out” for a drive.
• The Ani concert and backstage passes that Melody arranged.
• Talking with Kat about her plans for the future. The joy of knowing that Kat envisions a future with herself in it.

I am thankful for Kat’s degree of health. When I think of where we were with her for the three months of April, May and June of last year; the physical pain, the disability that she was experiencing, the frantic quest to beat the clock and find help for our daughter, I am grateful that she can walk up and down stairs alone, drive herself to the store, carry on a conversation about topics other than her pain. I am grateful that she is alive and that her pain is controlled with so much less medication than before. I am also aware that we still don’t know what we don’t know. This is a dreadful disease and it is still inside “my little girl”.

That first day, I said, “I wish I didn’t know that.”  There are so many things I have learned that I “wish I didn’t know”.  I am much more in touch with and aware of the ubiquitous pain and suffering in the world than I was. Many times when I tell someone about Kat, their response includes the fact that they are a cancer survivor, or that someone they love has cancer or died from cancer… And not just strangers. People simply don’t talk about their journeys with cancer. I think there are many reasons for that.  For one, we can get tired of talking about the facts. Sometimes I want to talk about what I am learning in the experience, but there are few safe places to do that. I would like to be one who creates safe places to talk about the things that are truly important.

I am happy to report that the bathroom ceiling was completed sometime last summer.  Not such a big deal after all. A huge mess, but messes are nothing…

Click here to read about Kat’s journey on Caringbridge.

People like you and I point fingers at one another saying, “You hurt me!”  The truth is, I did hurt you, whether I meant to or not.  You hurt me, whether you meant to or not.  I am hurt.  You are hurt.  I cannot see your hurt because of my own hurt.  You can’t see mine because of yours.  We are each stuck in our own pain, pointing fingers of blame.  Again, the endless cycle.  What can stop the cycle.

The only choice other than feeling the pain and looking for blame seems to be to just sweep it all under the rug.  Just pretend as if nothing happened.  But it did.  The hurt is real.  The pain is intense.  To ignore it is to direct the rage inward.  Inward where it will eat us alive.  What else can we do?  Am I supposed to just “forgive and forget”?  I can’t forget.  It hurts too bad.   The two choices to a) live in the pain and feel the hurt or b) bury the pain and pretend it is not there both feed the cycle.  But it is all most of us have ever seen… ever!  There must be another way.

Enter Grace stage left…

No, I’m not getting religious.  As much as I have heard grace talked about at church, rarely if ever have I seen it practiced.  I’m not talking about some cosmic thing that you can’t quite put your brain around.  I mean the kind of demonstrated grace we can experience in this life.  It understands we are both in pain and that much of that pain is born from misunderstanding.  The grace I am talking about allows me to listen to you without defense when you are accusing me.  (Ever experienced that?)  In this kind of grace I recognize that I am a pain giver as well as a pain receiver. (Ouch!)   This grace creates a space where you and I can listen to one another for understanding, not to fix the problem and not even to agree!  The kind of grace space I mean is one where you and I can feel both listened to and understood.  Where we are not so concerned with who got the most points or who won.

The world is full of hurt people.  Some of them were hurt by me.  Some by you. I know some of the wounds I have inflicted, but not all of them.  I want to live in a place of grace where I can confess my faults and feel understood.  If there is to be any hope of having a space like that, someone has to start.  Someone must break the cycle.  In that spirit, I want to be one who helps create those kinds of spaces for others.  It has to start somewhere.  Why not here?  Why not now?  It is not an easier way to live, but it is a better way to live.

Each day I understand better that our value is not tied to what we do or even what we can do.  We all have value because we are.  There’s value in just showing up and being present.  Planning and preparing are important, but they aren’t everything.  I am learning that, while being prepared is invaluable, being present is just as important if not more so.

The section I read today in the book was on rituals.  Being one who loves variety, I have always thought of rituals as ruts, but this book has given me a different perspective.  Rituals can help us get in the groove.  Madson was relating about the rituals she was introduced to in some classes she took.  She says,

At our desks in calligraphy class, we began with the ritual of grinding  the ink.  There is a correct way to hold the ink stick and to move it in small circles in a tiny pool of water on the stone that serves as an inkwell.  The action of making ink became both a physical and mental preparation for the work of learning how to paint Japanese characters and bamboo leaves.

These rituals at the beginning of each session had the effect of creating order and harmony.  We knew what we had to do when we entered the sace.  Cleaning and grinding ink got us into the world of the art without the stress of creation.  There was a calming effect…

My best meetings have been the ones where I not only prepared for the content, but took time to prepare my self to clear out the clutter and be more present.  What a wonderful way to look at rituals as preparation for the art of being present.

When I feel stirred, it feels like a small voice saying, “Pay attention.  Something cool is going on.”  It is an opportunity to see something new that I never saw before, or something old in a new way… hearing a new sound… smelling a new smell (what did I have for lunch?).  For me, being stirred is learning.  My artist/neighbor/friend says, “To truly live and grow is to always be open to being stirred/ stimulated/ moved, isn’t it?” What does stirring mean for you?

Reading for stirring

When I was younger, I read mostly for information.  I was (and am) a learner. The rule makers I was trying to please said, “Learn the rules and obey them and you will be okay.”  So I studied and listened in order to learn the rules of life.  The better I learned the rules, the better I could recite them and the more I felt like I fit in.  Unfortunately, with my head down, learning and applying the rules, I didn’t see that I was following a map through life that was written by others who were as clueless as I was.  They saw what they saw and no more. Lately I have found myself understanding that most rules are someone else’s ideas about how life works.  They remind me of the ancient maps of the world drawn by people who had a very limited perspective.  Yes, they were invaluable in their day, but really… are you kidding me.  This is North America?

Lately I find that I am reading less for learning and more for stirring.  I want to learn, but to get more perspective, not the right answer.  Don’t get me wrong, I do read to learn, but the ideas the author is trying to convey are less important to me than what her words stir in me. Not because I have all the answers, but because some things I am ready to learn and others… not so much.  The stirrings are a clue to what I’m ready for.  Some of my recent reads have stirred me to irritation.  Even that has value.  I was able to ask myself what I believed and what was this author stirring in me.  That was way more valuable than reading an author I agreed with completely (if that were possible).

Lately, I find that I enjoy two kinds of books.  The first type is books that explain some facet of the way life works in a way that I have never thought of before.  Malcolm Gladwell’s Blink and Seth Godin’s Linchpin are two that I particularly enjoyed.  I’m reading one now, called Nudge that talks about the kinds of things that influence the thousands of decisions we make every day.  Fascinating stuff.  Not the whole story, but a new perspective.  The other kind of books I find myself gravitating to are biographies.  I got stuck on presidential bios for a while and then got out of that rut by reading a biography of Louis Armstrong, Pops.

I am a little surprised that I like biographies so much for two reasons.  First because, I like surprises. I don’t want to know what is coming next.  With a biography, you already know the ending.  For me, knowing that the story is true and experiencing the depth of the whole person is fascinating and stirring.  I pick a biography because of what the person did.  But when I as I slow down long enough to read the details of his life, he becomes a real person with real difficulties to overcome.  The other reason my interest in biographies surprises me is that I’m not a big fan of history.  I find facts and dates to be overwhelming and boring.  But reading the biography of a historical figure helps me experience history through their eyes.  They become much more than their accomplishments.  That stirs me, and I like being stirred.

Molly in Charlotte

New words, laughter and smiles

Grandparents smiling

Am I alone?  Are you stirred?  Do you ever feel a little emotional flip in your belly?  It doesn’t have to be a huge thing, just a tiny little flip will do.  If so, you too have been stirred.

Stirred [adjective] Being excited or provoked to the expression of an emotion

Imagine a jar of water.  The water is clear, but there is sediment on the bottom.  The jar is me (or you), the clear water is a lack of emotion.  The sediment is the stuff we remember from our past… some of it good some of it bad.  It is made up of memories and beliefs attached to the memories that were emotionally embedded.  Haven’t you ever been reminiscing about something with a friend and say, “Remember when we…?” and the friend doesn’t know what you are talking about. She has no memory of it whatsoever.  Chances are, it was emotionally embedded for you, but not for her.

Our jars get stirred when anything bumps up against our expectations and beliefs.  Sometimes we feel that little emotional flip.  Sometimes we are paralyzed with anxiety.  Our tendency is to ignore the little flips and avoid the big ones until the emotion dies down and it seemingly takes care of itself.  Getting stirred can be incredibly uncomfortable and even embarrassing.  If we just hold the jar still long enough, the feeling will go away.  I think that’s what they mean when they say, “time heals all wounds.”  It doesn’t, but the feeling gets smaller over time.  It becomes more sediment in the jar to be stirred up later.

The feelings are what embeds the memory and with the memories are embedded beliefs.  Some are true, but many are lies.  The value in the stirring is that we can feel and in the process examine those beliefs.  I won’t tell you that is easy.  In fact it is incredibly difficult to examine carefully and to be honest about those beliefs.  As far as I know, the only alternatives are to a) ignore the stirring and hope it will go away soon or b) point fingers at other people or circumstances.  Neither is worth the pain in the long run.

The thing is, stirring the jar is the only way I know of to un-embed those feelings and beliefs.  As uncomfortable as it is, it is valuable.  Kind of like removing a splinter.  The first time you get a splinter, getting it out with the tweezers hurts like crazy.  The second time, just the sight of the tweezers is enough to hurt even worse than it did before.  There’s a fear embedded with the memory.  The problem is that to leave the splinter is to invite infection.  So we feel the fear and let the tweezers do their work anyway.  Soon it is all forgotten.

I am afraid of being stirred.  Just the same, I want to be stirred.  When I feel the flip, I want to keep asking myself what it is about.  What do I believe?  Is it true?

What about you?

When we want help, we want the listener to listen for understanding.  We want solutions.  However, when we want to vent, solutions is exactly what we do not want.  We want to be listened to just for understanding.  It’s a subtle difference, but it is the difference between the speaker getting what they want or not.  If the speaker owns the topic and doesn’t get what they want, the whole experience is frustrating and irritating.  When it works though, it is magical.  There is nothing quite like the feeling you get when someone focuses on you and truly listens for understanding.

Listening is expensive because it is hard work (hard emotional work) and because it is rare. One last thought.  If you want me to listen for understanding, do what Jeanie did.  Tell me what you want and, who knows, you might just get it.

Thanks Sweetie.  It is an honor to hear your heart.

Wouldn’t you know there is a site devoted to tying ones shoes; Ian’s Shoelace Site features 17 ways to tie a shoelace. I experimented with each of them evaluating for ease of tying and security until I came to the “Two Loop Shoelace Knot”; the “normal” knot that I learned when I was a kid.  Thinking that it has never been very secure, I almost moved on and then I caught Ian’s warning:  “It’s often tied incorrectly, resulting in an un-balanced ‘Granny Knot’.” As an experiment, I tied my shoes automatically without thinking about how I was doing it and checked the results.  No wonder my shoelaces always come untied.  I have been tying a “granny knot” my whole life!

So, I didn’t need a fancy new way of tying my shoes, I just needed to tie a square knot instead of a granny knot.  I have to think about what I am doing when I tie them now, but now that I am tying them correctly, my shoes have been quite secure for the last couple of weeks.  Who says you can’t teach an old dog new tricks?

I knew I was going to love being a grandpa, but I didn’t know why.  It’s hard to explain, but kinda like this…

• First I grew up.  I wasn’t really aware of what was going on because it was the first time I’d ever grown up.
• Next, I had kids of my own and I got to grow up again.  While I observed the things they were going through, I remembered similar experiences I had.  I wasn’t really trying to live my life through them, but it sorta happened that way when their stuff reminded me of my stuff.
• Now as the grandpa, I get to do it again.  Only this time I am not primarily responsible for this one.  When I am with her I can just love up on her and study her.  I love watching  her learn.

The interesting thing is that I change each time I go through this process.  I think it is interesting how as parents we tended to worry about how our actions would affect our children.  What we missed in the process is how they were changing us.  I’m not the same person I was when any of my children were a year old.  Molly is already working her magic on me.  Giving me a whole new outlook on life.

Last time I was with her was Thanksgiving weekend.  Over and over, I went through the routine of placing my hand on my chest and saying, “Pops”.  Then I put my hand on her chest and said, “Molly”.  After a few times, she put her hand on my chest and a couple of times she actually said, “Pops!”  Danae said that she had to mop me up off the floor when I melted.

Here are some recent photos for fans:

2009-11-30 Thanksgiving

I can understand why they didn’t allow us to see it.  This modern, artful depiction of Jesus and his followers was way too “out there” for most of the folks in my parents’ generation.  In this musical, Jesus is a hippie and is dressed clownishly.  The whole “hippie” thing of free love and irresponsibility, chafed against their values  for hard work and conformity.  To make matters worse, his disciples are both black and white, male and female and the songs are rowdy rock and roll (for the time).

While I understand and even respect the stance of those church leaders (oddly, I don’t remember ever discussing this with my parents), I was not part of their generation and I feel like I missed something good.  The movie I watched tonight was quite dated.  The video quality and the style of music were typical of the 70′s… but there was something about it that moved me.  I think I would have been moved as a teenager too.  I saw a creative, artistic expression of the life of Jesus that I think would have inspired me.  Clearly, it was never intended to be taken as a literal interpretation of the Bible, but that fact was likely missed by the folks who ran things in my church.  Their position was that dancing, joking, references to drinking wine, etc were sacrilegious and disrespectful.  To them, acceptable depictions of Christian themes in art would be limited to “normal” church music and art.

I remember some of the songs from the musical like “Day by Day” that came into their own as pop tunes.   I could never understand what they found offensive (apart from the association with the musical itself).  According to the wisdom of Wikipedia, “Most of the score’s lyrics were from the Episcopal Hymnal, set to music by the cast members.”  I think it was a good desire to protect the young people from something, but in retrospect, their control kept me from an experience that would have been enriching to me.

Day by day
Day by day
Oh Dear Lord
Three things I pray
To see thee more clearly
Love thee more dearly
Follow thee more nearly
Day by day