Following Dreams

Jed spent 2 1/2 years building up his strength and abilities.  He was getting to the point that he could see the day when he would walk, really walk.  Walk without major assistance.  Walk because he wanted to go someplace.  He worked at it.  He worked with determination and focus.  We all worked.  Standing practice.  Squats.  Over and over to exhaustion, followed by pride.  It was a dream, a future reality.  We knew it was just a matter of combining exercise wtih therapy, with nutrition, with good home practices.  We worked, and we worked, and we worked.  We bought a standing frame to help him gain strength.  He got to the point where he could stand for an hour or more, watching TV or working at his computer.  It was all linear and made sense. 

Then he got shingles.  Shingles are bad.  Jed lost all desire to work at his dream of walking.  Life became a constant need to rid him of pain.  Then it went worse.  He lost drive and stamina, but he also lost immune power.  Pnuemonia set in.  Weeks and weeks.  He spent months in bed with no desire to move toward anything but sleep. 

He wasn't even aware how long it all was, the loss of the dream.  One bad thing upon another and he became bedridden and powerless. 

But now he knows.  He remembers where he was.  He knows that the 2 1/2 years of building have been lost. 

But, remarkably, he is beginning again.  He is finding the strength, somewhere, to start again. 

Now we are practicing standing.  He is standing in the standing frame for 5-10 minutes, not the once hour.  He is seeing the dream, and is willing to start the tremendous effort to begin to follow it once again.

I have great admiration for his grit. 

We don't talk about God much.  But we both have a powerful and constant faith that we can neither define nor grasp.  It's just there.  I can't imagine life without it.  Grit and determination are wonderful.  Following dreams, however basic, are important, but life without faith would be really awful.  

This ain't for no chickens

So, here we are.  Almost ready to lose the house.  Jed lying here with pneumonia, Ubaldo(the care giver) having to deal with kidney disease, on top of all the other stuff he has had to deal with, and me, just finding comfort in brandy and potato chips. 

Tonight I signed the papers to put the house up for a short sale.  This, I suppose will take some time, but it's no fun to be making these kinds of decisions alone.  

Bottom line is that this kind of living simply ain't for chickens. Eagles or lions, maybe.  But chickens, no. 

We raised chickens on the farm.  I gathered the eggs and I hated the aggressive chicken that didn't want to give up her egg.  Sometimes I just wouldn't get  her egg, because I was just too afraid.  She just kept pecking at me. 

But my most vivid memory of the chickens on the farm was when my mom decided it was chicken killing time.  I don't know when that was, spring? fall?  don't remember, but what I do remember was the techique.

Mom would walk to the chicken coop with an ax in her hand and feed in her pocket.  She had a wire clothes hanger folded out with a hook on the end along her side. 

"Here chicky, chicky,"  she would say. And the chickens would come for the food she scattered from her apron store.  Then, quick as a chicken's feather, she would use the coat hanger to grab the leg of an unsuppecting hen, ax would appear and head would be off. 

I remember the awe of  watching a headless chicken strut and flutter, and the pride of watching my little bitty mother wheel an ax. 

So, here I am.  Wheeling my own ax.  Trying to behead the fowl we face.  Proud that I have my mother's grit.  I have my apron full of feed.  My ax in hand, and my bent out clothes hanger ready to grab an unsuspecting fowl.  I'm prepared.  I just haven't identified my prey. 

Is it the pneumonia?  The quadriplegia?  The mortgage company?  Our bad decisions?  I'm ready to kill something.  I just don't know what to kill.  Mom had some clarity.  "Kill the chickens so that my family has food."

I, too, am trying to save my family.  I just don't know what to kill. Or, maybe, it just isn't the time to kill.  Maybe it's the time to accept.  

Chickens really get a bad rap.  Like they represent the fearful.  "Don't be a chicken,"  etc.  But, my memory of our chickens was that they just lived life quite comfortably, until that day when my mother chopped their heads off. 

I'm not really sure where I'm going with this, except that, my life, right now, is not for the weak.  I am thankful for the heritage that I have because it gives me power.  My mom was a little bitty thing, but she had power over the land and the things around her simply by her will. 

She could kill when she needed to kill, plant when she needed to plant, and rise to the power of God when she needed to rise.  I draw upon that power that has been given me though eons of ancestors. 

This ain't for no chickens, because, you just might lose your head.  
'

Clear Thinking

Haven't written this year.  So far it's been a challenge and not much fun.  I could make a really long list of all the stuff that just keeps hitting the fan, but it wouldn't stop it from coming.  Jed has had the shingles since November and pneumonia for the last many weeks.  He's lost his strength.  But he hasn't lost his wisdom.  Tonight he spoke with clarity about situations beyond our control.  I said something like, "boy, when it gets bad it really gets bad doesn't it?"  He very calmly said, "I don't think that's the way you want to think about things."  And he went on to say, "when things get really hard, it's an opportunity.  The only real gift we have is our clear thinking." 

So he's laying there is bed, his whole body hurts from just laying around for almost eight weeks, he's lost almost everything he had gained in strength and ability since the fall, and he has the precision of thought to remind me to think clearly.  And to recognize it as a gift.

So, how to think clearly....Lately when I open my eyes each morning I say a simple prayer.  "Lord, keep me focused today."  Wallowing is so self serving and unattractive.  I shall not wallow.  I shall not.  I shall not.

Clear thinking.  I like that a lot.  Not only clear, but sequential.  Day by day.  Deal with what we have to deal with today with the most clear thinking as possible, and let tomorrow come after  a good rest.

Jed is an inspiration.  It will be three years in April.  He had made amazing progress and then, the last 8 weeks have stripped it away.  Tonight he said, "I don't even remember not being sick."  But all the while he is able to inspire others to bring themselves to a place of clarity.  I thank God everyday for him while at the same time pray for his total recovery. 

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. 

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. 



I

Dreams

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. 

Bowel Program

Most of us don't talk about it much, unless with our very good friends, and then it's rather clinical and nutritionally based.  It's quite important, however.  Too bad there's such a shame stigma about the poop thing.  Most of us have a poop memory that just sits there, on our minds, and we not willing to really face it.  But the truth is, when it goes in, it's gotta come out. If it doesn't, well then, there's a real problem.  What most of us don't do is really think about it, we just do it, take care of it privately ourselves and then walk about the rest of our day as though it didn't happen, or at least wasn't that important.  Not really much that is more important. 

When Jed was in rehab the nurses made a big deal out of the "bowel program."  Program?  I was a bit confused.  Me, coming from a music and teaching background, a program was something we invited people to and celebrated.  I can see her face still, the night nurse smiling happily as she put on her gloves and pulled the curtain around Jed's bed.  "I will do the bowel program tonight....,"  leaving me to wonder just what was going on behind that curtain.  

So, here we are more than two years later.  I know stuff now.  I probably knew it then, but that old "shame stigma" just didn't allow me to think about it in any constructive way.  Bottom line (joke, bottom) is that a healthy body needs to poop on a very regular, if not daily, basis.  Now how do you do that when you are a quadriplegic and have little or no feeling in or about the bottom line?  With help.

Now we have a "bowel program" daily.  If this is not the type of thing you like to read, sorry, but this is our life.  Take stalk of the beauty of your body and the comfort with which you manage your private poops.  Jed's body still needs to poop, so we have a program.  He can't really feel when he needs to go or when he has gone for that matter, but bodies are predictable so if we do the poop thing at about the same time each day, well, his body just remembers what to do.  But we have to remind the bowel of  it's job each day by giving it a suppository and waiting to remind the body of it's purpose.  It has a simple beauty of it's own. 

The bowel program takes about an hour each night. About that of any good program, huh?  Suppository, wait, transfer, wait, clean, transfer, clean up.  Sometimes I just think, "please not tonight, I just can't tonight," and then I'm reminded that the program is set, the body has remembered, and Jed's health depends upon this program to not only happen, but be successful. 

We don't talk much during the hour, but we both value the other.  When you stand at the alter and say "I do" to "for better or worse" you just don't think about this kind of thing.  This has to be very hard for Jed.  He was always a very private man.  None of this door wide open stuff for him, and now everything's wide open.  He often asks for small favors, like a shade pulled or a blanket on, "to protect my dignity."  But we both know that this is a health thing, not a shame thing or a dignity thing.  It's a necessity.  And so the marriage vow increases in power.  That fresh love grows more powerful with time and circumstance.  There's lots of things I would hope to never have to do, but when you are put in a place where you do it or lose something very valuable, it's a no brainer and becomes okay, just part of the program.