Sunday, January 31, 2010

Imagine not being able to move.  Try.  See how long you can stand it before you scratch your nose or rub your eye, brush back your hair, twitch your fingers or cross your legs.  Imagine you've been like that for 9 months plus a random week.  Imagine that there is one person that does everything for you.  Collects your urine, flosses your teeth, changes your clothes and sheets, moves you from bed to commode to chair to other chair, drives you to the doctor or therapy, pushes your chair, offers liquid and food as your need or desire demands and adjusts the television to the show you may or may not want.  Imagine.  Now imagine you are that other person. 

Very much in love, very willing and wanting to serve and please the one who has made your life full and rich and exceptional.  Strong and able.  Doing for self and other self at the same time wears and takes away from one or the other.  Trapped in a box.  In the box with him.  We both want out, but want the other to be free of the box so desparately. 

How?  There is no way.  It is what it is.  The box is a room with a TV and a hospital bed and way too many wheelchairs and no curtains, because she tore them down in a desparate attempt to redecorate.  Making a Victorian music room into a hospital bedroom takes special skills. 

He wants so desparately to walk.  Everyone is excited about his new electric wheelchair except him because it is a physical statement that he just might need it his whole life.  What a shitty deal.  This man, who was the jungle fighter for his junior high math students, who got them excited to explore mathematics by telling them they were about the learn the "language of the Gods," this man who built homes for a living and porches to please his wife, this man now lay immobile awaiting the whim of the one who serves.  What a cruel joke. 

Monday, January 25, 2010

Today is nine months.  We give birth to our new life.  Last night we lay talking for hours into the morning about hope.  Hope is like oxygen.  Without it we will die.  I had begun to lose hope had begun to settle for what we had.  We talked and helped each other understand that it is hope that keeps us alive.  Hope for a better day.  Hope that our love can bear the burden of this new life, hope that we will not become bitter, hope that Jed will walk.  My hope has changed somewhat from where it once was, but it is not gone.  Hope gives us breath.  The gestation period is over.  We've adjusted to differentness.  It's not so bad really.  We still laugh and go to movies.  We still give each other the strength to face another day with a determination and a smile.  What more could we ask?

Friday, January 22, 2010

Pearls from heaven.  We've been blessed with many of them.  I casually say, "That just dropped out of heaven."  Not wanting to put too great an emphasis on the religious bent.  But these have not been coincedences.  Jed and I have tried to live a good and fruitful life.  Like most people we know.  We have been kind, generous, honest and made good solid efforts to live lives worth living.  Ones that we could be proud to say, "that was mine."  And then this.  Some have said God is punishing.  Some have said that we are to learn something from this and God designed it that way.  Some have said we are to teach others something and God designed it that way.  I don't think God had anything to do with Jed's fall.  Other than the fact that it was God who created gravity.  But what I am in awe about is the blessings that have been bestowed on us since the accident.  I choose to believe they are from God.

We have been washed in blessings.  They're almost too many to list.  We're had a friend that came by every day just to massage Jed's hands.  Then they would sit,  watch TV and both fall asleep.  Things and people have literally "dropped out of heaven" for us and we watch in awe and thanksgiving.   The gardner brings casseroles and gets tutored in math, the housekeeper quietly washed both of our cars, and the caregiver, oh my the caregiver.  I practically picked him off the street.  He had been a customer who I slightly knew, but I hired him, bam.  No recommendation, to referral, he could have been YIKES!  But, wow, have we been blessed by his presence in our lives.  He has become a very valuable friend. 

Laughter comes easy.  Sometime Jed and he start laughing during a transfer or a bed change, or any number of menial care giving tasks and they are both laughing so hard that the task just doesn't get done.  Then I start laughing of fake scolding them and often we end up singing some dumb song while I play the piano and they pretend to be someone talented.  It's just that way, and it's nice.  The moment is everything.  We have may good ones. 

Laughter comes easy between the two of us.  One day Jed said, "don't make fun of me."  I wasn't about to be put in that box so I said, "if I can't make fun of you what good are you?"  Now that's our silliness we banter back and forth in public to make other people relax.  You can't imagine how hard we have to work to make other people comfortable around us.  So, one day, while at a friend's house for an outdoor picnic as the table next door just stared at us while I had to not only feed him but adjust him in his chair to avoid low blood pressure etc., I looked at the staring table and bright eyed said, "I told him that if I can't make fun of him what good is he."  They continued to stare.  No expression, just stare.  Blew that one.  I'm waiting to be reported to the quadriplgic abuse society. 

Today I did something for me that I am proud of.  I auditioned to sing the National Anthem for the Dogers.  I have no idea where this will take me, but I was proud that I took the time to do something I have always dreamed of doing...a bucket list kind of thing.  If I've learned anything from this almost year, its to grab the goodies of life while you can.  Don't hold back, just grab them. 

Saturday, January 16, 2010

When I first started this blog I had some elevated idea that not only did we have a unique experience to share but that I had a fine and elequent way of writing about our experince so that  people would find our journey intersting and literary.  Now I think that that was , well, all I can think of is cuss words.  We've been watching the Haiti earthquake reality and what we've come up with is, "so who are we to pine our problems?"  So I have a husband who cannot move his limbs.  I still have a husband.  We still talk over the day.  We still dream dreams for our grandchildren and have great aspirations for a future that we cannot know but have faith that exists.  The smallness of our exiseince and the minuteness of our problems overwhelm me. 

Our existence takes a lot of energy.  Exercising is primal.  Just lift your leg.  Really, just lift your leg.  Lift it and think about the energy you used.  For Jed it is phenomenal.  It is incredible.  Sitting in the chair and lifting his legs in a "march" is absolutly taxing.  Marching 25 times exhausts him and moves him toward bed.  But yet he drives himself....25 marches, 25 aductions, 25 abductions, "let's practice standing....."   Can you imaginne a life where you can't feed yourself, can't stand, can't deal with privite care, can't, can't ,can't???????  His stamina amazes me.  Almost 9 months.  He walked a long distance with Emily.  Walking with Emily and walking  alone are light years away.  So we exercise at home.  Oh, how I wish I had held the ladder. 

Thursday, January 14, 2010

Arrogance comes from feeling that what you are going through indeed is important enough that others would like to hear.  Reality is that others really don't care.  What they want is for you to be fine.  For you to tell them that all is fine, and for you not to complicate their already cluttered lives with the details of not fine.  So we all run around being fine, and not really touching anyone because touching hurts.  "How's your husband?" they ask.  They don't really want to know.  What they want to hear is,"oh, he's making progress and doing well, it's hard but we're both fine."  Fine, fine, fine, fine.  No one really cares.  They do, but they can't do a damn thing about whatever they care about so they just smile and nod and say something kind or foolish or awkward.  I remember when we really were fine.  I was the same.  I pretended to care too.  It's just too complicated to really care.  After all, who can fix a spinal cord?  Who can do anything?  This is a dark night.  We are fine.  Our fine has just changed so that now our fine is rather primitive and biological.  We are fine.  Fine.  Whoever came up with that word?  Why do we ever say, "how are you?" to people?  We really don't want to know.