Tuesday, March 23, 2010

Spring is here and my attitude is catching on.  Breathe in freshness.  I don't feel it but want to.  It is still just the same.  But today we tried something new with acupuncture.  We plugged me in to Jed.  Literally.  Needles in my legs, needles in his, cross with the right and left brain thing and hook up with electricity so we throb with anticipation of sharing energy.  Like an organ donar without the mess. 

Years ago my daughter advised me that I need to receive as much energy as I give.  This was related to my drained self at the end of a teaching day.  She recommended that I pay attention to energy going out and energy coming in because we need to be in balance.  Today I was more than happy to be an output for energy for Jed. 

It all seems like hocus pocus but it is all so steamed in the existance of life that I am not willing to dismiss the potential benefit.  So we sit with out legs connected and a generator moving our energy and wondering.  He wants his legs to be stonger.  Oh, how be both do.  Some think that if we just prayed hard enough and believe strong enough that we would be healed. 

God is with us.  God is in every thought and idea for cure that we have.  God is bigger than what we have.  God is bigger than quadripegia.  God is bigger than financal demise.  God is bigger than lonliness.  God is bigger than unknowing.  God is God and we either chose to believe that He is Him or we reject Him.  God is.  All this that we are experiencing is nothing.  (It's something to us, but it's nothing.)  Imagine everything you know on one page. And now imagine everything God knows.  It's millions and millions of libraries.  What we know and what we experience is nothing. 

So.  So we did not fall from grace.  My attitude, Jed's helplessness, my attitude, Jed's total lack of who he was, my attitude, Jed's inability.....all these are nothing.  One day we will see through the mirror fully and know.  Oh how I would like to be pissed off about this whole deal, but it just doesn't seem to have any substance.  God is  God and we wil one day know. 

Saturday, March 20, 2010

First day of Spring  Not a very happy day for me.  We've gone full circle with the seasons and we are back to Spring.  I don't even remember Summer.  It blurrs with the freeway trips to rehab. I don't remember Summer at all.  Fall was when we moved into life at home, when the church people moved in, when therapy was easy because it was here. Fall was almost fun.   Winter was dark because the electricity in the house stopped working and I couldn't afford the $2500 quoted to fix it.  Winter was smelly because the plumbing went bad 3 times until we finally paid for a big root killing-drilling job. Winter was sad because my dad died.  And now it's Spring. 

I watch people work in the garden.   I hear friends complain about working hard with their husbands, cleaning up their yards.  Spring seems to bring new life and energy.  But to us, it's the same.  The season doesn't matter. What matters is standing practice, or a "doughnut" to relieve the bottom end that gets much too much use.  What matters is 20 minutes in the "bounce" chair.  What matters is meds at the right intervals and bowel movements.  It could be Summer, or Winter, or Fall.  It doesn't matter. 

What does matter is remembering.  We now have electricity because a young man who found a home with us for a year, when he really needed one, just appeared one day and fixed our problem.  It's been 15 years since he lived here, but he said that he would charge us a year's rent for the repair.  Nice.  It took him several days and lots of crawling around in very dirty places, but we are now well lit. 

Last night was a Spring cleaning night at the shop.  I asked my dealers for help.  "Will work for food."
Fifteen people came and worked very hard organizing, dusting, decorating.  I was overwhelmed with the progress and the willingness that everyone had to pitch in and help out.  The garage had become almost unenterable and it is now amazingly organized.   Jed stayed home alone.  That was his gift to me. I cried when I left him because he felt so helpless. 

We will get through this.  We give to each other the meager gifts we have to give.  Mine is willingness, his is patience.  We hold each other up and look forward.  The second day of Spring will be better.

Saturday, March 13, 2010

Edge.  On the edge of despair, lost our edge, clean your edges, on the edge of a cliff, the edge of a razor, edge. Don't lose your edge.  I think we've lost our edge.  Edge.  What is that anyway?  The good side of life?  When you lose your edge what have you really lost?  Have you lost your ability to believe that the next day will be better than today?  Have you lost a precious gift?  It sounds so ominous, so final.  Like, if you lose your edge you will never find it and you will pine its loss forever.  Edge. 

Today was an edge losing day.  Edge was floating around like butterflies and we were trying to catch them with no apparent success.  Edge was the illusive butterfly. So when you lose your edge what happens?  Will you know it when it's gone?  Will it hurt?  Or will it be one of those comforting things that just takes you into a life of "less than we were" without us knowing?  Edge. How important is it?  Is it Godly? 

Jed thinks he's lost his edge. This is so very sad.  This man has lived on the edge his whole life.  Even his father called him, "The master of modern living."  And if Jed thinks he's lost his edge he's saying to me that he's lost the essence of himself.  (Like Jackie Draper in "Puff the Magic Dragon".)   I'm an elementary school teacher and a romantic to boot, so my life story will wrap around children's stories and songs. 

One month before the accident Jed took the grown grandkids skiing and snowboarding.  Jed was a snowboarder (probably the oldest on the slopes.)   On the slopes your edges are very important.  But it isn't just the equipment that has to work.  It is the boarder.  The boarder has to make a decision to dig in the edges when the time is right, and release them at other times for the best ride. 

It's not much different now.  He has not lost his edge.  It's just a day to release them and let the slope take us where it will.  Having life experiences is good to be able to reflect and gain perspective.  Edge is good.  Edge is controlable.  Edge gives us the sharpness of life but we can't be there always or we simply would crash and die.   

Thursday, March 11, 2010

We're trying to figure out what to do with our lives.  Things are so different that we have to think differetly.  Like, what do we do with a large old 1890's farm house when all the bedrooms are upstairs and the mortgage is out of this world?  So we applied for a modification and in the meantime applied to a senior park.  We figured we could live there rather maintence free and at least have all the living space on one floor.  Wheel chairs don't go upstairs very well. 

Shock of shocks, we were denied entrance into the senior park because our credit is shot.  You see, after the fall Jed lost all his real estate investments.  We were on the verge of being millionaires many times over and now we get denied by a senior park.  They told me that they would let us move in if we provided a guaranture.  No way.  I will not burden anyone else.  Can you imagine?  That's the kind of thing teenagers do when they buy their first car.    I wrote a letter explaining the situation and gave them a "we are of good character" appeal but thet weren't impressed.  Insult indeed.  Even though it seemed smart to live there, the very thought of it made me cringe so I had to  accept the outcome as simply okay and be open for what lies ahead. 

In the meantime we modified our loan and are living quite comfortably in the house the once felt quite large but now feels very small as three wheel chairs, a commode, a hospital bed and a bed for me now fill the living room and the rest  just feels small. 

We know that many decisions lie ahead for us.  One of which is, just how far do we go to pursue a cure?"  We have come to know of a stem cell program in Germany which we plan to apply for.  The questions are numerous, but the bottom line is, "is this smart?"  I suppose there is no way of really knowing, so we need to trust the peace and comfort that comes, if it comes, with making the decision. Listening is a very good thing.  Listening to the silent truth that comes to us in waves. 

Wednesday, March 10, 2010

I am from a very, very small town in Nebraska.  Actually I lived on a farm 6 miles out of that very, very small town.  Remarkably the folks in that very, very small town (abont 250 people) have kept a ministry going for years. 

They're so small that they have a community church because the town can't support lots of denominations.  That little church has kept a weekly, mind you, weekly newsletter going for years. 

It came today and one of the "articles" was about Grace.  It reads:

"Grace strikes us when, year after year, longed-for perfection does not apper, when the old compulsions reign within  us as they have for decades, when despair destroys all joy and courage.  Sometimes, at that moment, a wave of light breaks into our darkness, and is as though a voice were saying, 'you are accepted, you ae accepted, accepted by that which is greater than you....'  If that happens to us, we experience Grace."  Paul Tillich 

This touched me.  "We did not fall from Grace "has been my on going theme since the life changing fall on April 25, 09. But Grace.  What is it?  Purity.  Purity that even though we are us and experience "us stuff,"  something out there is bigger, knows all, comforts when we let it, guides when we listen, mourns when we mourn and carries us to a new day. 

Grace grants peace.  Grace is God's talcum powder.  I think I would die without it.  Grace allows me to smile and mean it, change bedding and do laundry, watch my husband struggle with pain and loss.  Grace rocks.   It's the misletoe of a real bad deal, it's the aroma in a lovely rose, it's the smile on a child, the battery that works, the plumber who prays and the gardner who cooks.  Grace is eyes open to see goodness and eyes closed to a miserable future.  Grace rocks. 
Have you ever tried to floss another person's teeth?  I have other indigant personal questions I could ask, but the real question is, do you know what it takes to keep another person involved in life? I'm in love with my husband and have been for a very long time.  I love him because he give me me.  It's a very precious gift.  We don't really know ourselves and when we meet someone who reads us, knows us before we know ourselves.....My God!   Make them your life partner!   So that's what we did, some 21 years ago, but just now we are getting to know each other. 

I'm a God person so one would think that maybe I would jump to "God wanted this to happed and it's in His plan."  Well, for all you other God people, I didn't go there and hope to never.  Jed just fell off a ladder.  God made gravity and unfortunately gravity won.  I don't believe for a minute that God made Jed fall or designed it that way.  I do believe that He, God, has been there all the way to give people to make the fall journey more bearable. 

From the beginning.  Almost a year ago.  People.  From soup to ham to ramps to transport cars to electricians, to care givers.  People of God have been there for us.  

I have a great deal of anxiety about finances and future and life the way it is, but, I really don't know why, because God has been there through it all.  When we have had a need it has been so amazingly soothed.  God has given us people. 

Jed is an amazing man.  He brings people to him and allows them to be light with him.  He continues that with no arms and legs.  Today we had an appointment with our spinal cord doctor and while we waited in the loby Jed worked the audience.  The audience was two young men who were victims of motorcycle accidents.  They were in their 20s.   Before we left there was a brotherhood expression, laughter, "yeah, man", keep it up.....Jed worked the room and brought a little bit of joy to the young men.  Spinal cord injuries stick together. 

But flossing teeth, well it's just something we do for ourselves.  We don't do it as an expression of love, like kissing and hugging.  But in my world we do that and more. 

He thinks I do this for him.  The truth is I do it for me.  I'm a better person now. 

Monday, March 8, 2010

We're having a series of firsts.  Each one has its own difficulty in facing  the reality of how our life was and how our life is, well, black and white, night and day, in and out, up and down.  It's just completely the other side of the coin.  Today we went to the casino.

Tonight was the first time we talked about our firsts.  The first time we ate together in public, the first time we went to the movie, the first time we went for a walk....Each one has some memory that has to be faced, remembered, pined, and erased.  Each one has an element of embarassement or of adaptation.  Or even anger.  As our firsts get more frequent our adaptability gets more power and our "everyone's looking at us" gets smaller and loses its strength. 

The first time we had a meal in public was accompanied by anger and shame and carefulness.  We were not very successful.  Being a grown man who has always been in charge of life having to be fed, and then dropping a cookie because you try, and then having food on your shirt....It's almost unbearable.  But we didn't talk about it.  We just went home, went to sleep and knew that we will always eat in private  But now, now the waitress brings extra long straws and we laugh about whos bite it is.  Firsts that are allowed to become seconds get better. 

The first time we went to the movie was humbling.  The handicapped area is very close to the front.  Everyone sees.  Everyone knows.  But as the films play on and the movie "club" expands, movie night becomes important, an evening away from early to bed and reruns of "Bones."  Being social is not dependent upon arms and legs.

But today we went to the casino.  Jed and I have lovely (and some not so lovely) memories of casinos.  It was our place to laugh and forget.  Today we remembered and it was painful.  We were big about it, but it was painful.  Jed used to light up a craps table with his loud silliness and his cowboy hat.  Today he awkwardly manuevered around people and graciously waited while I endulged.  Tonight he said, "I feel like I should apologize to you."  Apologize.  Apologize for trying?, for making the effort?, for giving me an afternoon of randomness?  That's when we talked about firsts. 

We will either have many many firsts or we will stay in this living room, sleep and watch TV.  Firsts are necessary.  They are theraputic.  Without them we would die a very slow and sheltered death.  I'm proud of Jed for, no matter how uncomfortable or how awkward or how embarassing or painful, he is willing to do firsts. 

Wednesday, March 3, 2010

I'm not impressed by much in life.  But once a pianist and beautiful woman touched my heart.  She was our pastor's wife and she played as though God had touched the tips of her fingers and the essence of her heart.  She told the story of how she learned to play on a paper piano because her family was poor and could not buy a piano for her to practice, so she listened well and practiced on a paper piano hearing the music in her head and heart.  Every time she played I was touched to tears.  She had to leave.  Pastors wives follow their husbands as it should be.  But one day, one Sunday morning before they left she was playing.  Playing beautiful music so that the sanctuary welled with awesome and incredible reality.  Jed and I were in the back.  He said to me, "let's dance down the isle!  Come on, let's dance down the isle."  But I was too proper and too "what would people think" and too too.  So I said. "No."  Not long after the  invite the ladder slipped and the dancing haulted.  Often I fanticize about the liturgical dance we could have had.  We could have danced to the beauty of real Godliness, but I was too too.  Too much wondering, Too much proper.  Too much "don't be silly."  And now.  Now I say to everyone, "dance while you can!"  "Dance to the drum and to the call of beauty.  Dance when dancing seems silly or wrong.  Dance.  Now we can't dance.  Now our dance is on wheels and mechanical.  Now our dance is a struggle.  Get out ther and dance.  You don't have to have a reason or a special tune.  Life is a dance and don't hold back.  Think of the joy that is there for you.  Holding back because you think someone might not approve is just silly.  Legs are ther for a reason.  Use them.  Arms can caress and guide and hold.  Trust them.  Dance and laugh.  My God.  What is life all about it not to dance the dance that is put before you.