Saturday, December 31, 2011

What's it really like?

I talk on and on about how blessed we are.  But what's it really like?  How does our day go?  Well, we wake up because Jed is in pain.  His nerve pain is unmerciful and a shirt or a blanket or a pillow touching an unmedicated spot brings this strong, "I'm not afraid of anything," man to tears and cries of anguish.  Pills are critical and take hold quickly.  After about 20 min. he is able to have breakfast and think about the day.  Bed bath is the norm.  We have an outdoor shower built for him but the winter, even though it is California, keeps us in, not out.  So, bed bath and dress.  Then breakfast.  It's now about an hour after we have risen.  Breakfast and Fox Business.  I know more about the price of gold than I ever thought possible.  Then it's teeth brushing.  He wants to do it himself, but it's a challenge.  So, we prop the pillow, place the arm, place the electric toothbrush and go.  Often he drops it.  Often he cusses.  Just part of the day.  Grip.  He has little grip.  How can you hold on to a toothbrush with no grip?  Somehow we get through the process feeling accomplished. 

Then we face the day.  "On your side?"  Since he had the shingles, about 4 weeks now, he hasn't had the energy to do anything but get through the day.  No standing practice.  No walking practice.  No standing machine.  We just decide whether he should be on one side or the other.  I guess it's depressing.  He was making good progress before, but we try to realize that this is just a set back, not a pattern of life.  So this is what it's really like. 

And, on top of it all he just got news that his forever friend died.  That happens to us all, but Jed has no power.  No power to visit.  No power to greet.  He just has to internalize it all and turn to the other side. 
Me, I'm drinking brandy.  That's what it's really like. 

But, in the midst of our daily ritual of managing pain and ignoring reality, we have fun.  We visit with friends, we argue about movie trivia, we tease Ubaldo.  This life sucks.  But it is quite remarkable at the same time.  We are blessed.  Probably no more than the rest of you, but we have been put in a position where we are forced to realize it. 

Friday, December 30, 2011

Why Try So Hard?

Christmas is out of our house.  Tree out.  Santa out.  Wrapping out.  Lights down.  Gone.  Short lived, but lovely.  Sometimes I wonder why we try so hard.  I remember mom putting up the storm windows in the fall.  They were windows, lined with heavy plastic.  She changed out the screens and put up the storm window with regular ritual, just like we pull in a Christmas tree and bangle it with baubles.  It's stuff we do to mark time.  Sometimes, like the storm windows, it has a practical purpose.  Sometimes, like the Christmas decor, we just do it.  We do it because our families before us have done it.  We do it because all the stores tell us to do it.  And sometimes, we just do it because it makes us happy. 

This year Ubaldo did it.  He even put a laying down tree on top of a cabinet, hooked it up to remote and wa la...Christmas in our room.  Our room is where Jed spends most of his time.  TV and comfortable bed.  That's our room.

This year we didn't make church once in December, not even Christmas Day.  Jed got the shingles and it set him back a lot.  His stamina is limited.  One Sunday we spent all day in ER another all day in bed.   But what we got this Christmas was real.

Jed's very good friend called us from the hospital.  "Just got a heart transplant."  Another loyal forever friend died.  My dear friend who's more family than friend, came from Macedonia Peace Corp and we were just regular together.  Regular is very very good.  And then, two cousins, sisters, popped into my life after some 30 years.  We touched one another with blood oil.  Soothing and assured. 

I am reminded, through them that my parents were remarkable.  It is good to have others vouch for my memory.  I guess that's why we try so hard.  We try to live up to our memories.  To hold on to who other people remember who we were. 

So now that Christmas is out of our house, I feel very Christmasy.  Warm and fuzzy.  Remembering and hopeful.  Jesus didn't come to this world so that we could decorate our homes and pass gifts.  He came to make us know that we have a purpose.  That we are important and that God is the ultimate answer.  We try so hard because we are human, we forget, we try to remember, we forget, we try again, on and on we go. 

It's our journey.  It's good to remember our journey. Jed and I have been remarkably blessed on our journey and it's good to remember.  It's good to be reminded by friends and family, and it's good to try hard to keep the journey on a positive path. 


Thursday, December 8, 2011


I don't think there's a person in the world who doesn't dream about something better than where they are in life.  Last night I dreamed I walked to Seattle.  So what on earth could that mean?  I was walking and walking, getting very tired.  People I knew would stop and ask me if I wanted to ride.  I said no, that I was fine walking.  But, in my dream I stopped and wondered why I had refused those rides, because I was so very tired and knew I wouldn't make Seattle in time.  In time for what I don't recall.  So, what does it all mean?  

Maybe I'm unconsciously stating that I can do this.  It will be hard.  It will take most of me, but I can do it.  It's nice to know that there are people who will offer help, but right now I don't need it.  I wonder if that's what it means?  There's a sign in the shop that says, "happiness is a choice."  I believe in that powerfully.  We can choose.  Choice is one of the great eternal gifts.  We can choose happiness.  We can choose God.  We can choose pretty much anything we want to choose.  A bit of a curse at times, but an amazing gift.

So, I dream of Jed walking.  I dream of him happy and competent.  I find myself at times settling for his handicap.  Settling for bedriddenness.  But I dream of more and I know he does. 

Recently we have changed our approach to this reality.  Less therapy, more at home focus.  I'm conflicted.  It was good to have a place to go and someone to meet for therapy.  Now, we have to make choices at home.  Choices to stay in bed or get up and work at standing.  Choices to watch TV or practice walking.  Choices. 

Jed's progress has not been linear.  It's not been a straight upward line of progress.  Rather, it has jumped all over the place.  Great progress, giant set back, major breakthrough, illness, etc, etc, etc. But he continues to be able to do more than he once could. 

I feel guilty and convicted often.   "If I had gotten better doctors, if I had not given up the Blue Cross Insurance, If I had been home with him more......," bunches and bunches of should-upons.  But in all my inadequacies, I still dream.  I still believe that Jed will walk and function for himself.  He's beginning to approach life from a "this is all I am" approach.  It's sad to see him begin to give up.  He wants more in life.