Mysterious Ways

When something happens to us that we can't answer in our own terms someone inevitably says, "God works in mysterious ways."  People usually smile, and the more believing usually add something like, "yes, God is so good, or we just have to wait on the Lord." 

That kind of talk has never brought me much comfort.  Why in heavens name would God, all loving and knowing, want to be mysterious?  Like it was a game He/She was playing with us (the lessers) for His/Her entertainment.  Mystery, Magic, Make their life crazy. 

What I like, is breathing in God.  There is no mystery in God.  There is only beauty and love.  The mystery lies in our unwillingness to accept the gift so freely given.  We distrust pure beauty and love so we call it mysterious. 

It's not mysterious that amazing and beautiful people have come into our lives since the accident.  It's not mysterious that ramps are built and food is provided and friends come at just the exact right time or that assurance is given or prayers offered exactly when we need them.  It's not even mysterious that we are sometime left to our own musings to feel pain and loss and sorrow.  Breathing in God takes away the mystery.

I've lost count of the exact days, but I guess tomorrow will be 14 months since a fall from a ladder has changed out lives, dramatically.  Not mysteriously, just dramatically.  But, within days after the fall Jed said, "this was supposed to happen."

I've had trouble with that.  Trouble, but when I've allowed myself to just breathe in God, I see some truth. 

New Car

You know how it is.  You get a new car and then you see them everywhere.  It's like that with wheelchairs.  I can't believe that I'm studying people's wheelchairs now and silently evaluating their condition based on the type of wheelchair they have. 

Tonight we went to the movie.  Ubaldo and Jed met me there as they had just come from therapy and I from the shop.  Prior to their arrival I watched a woman help a man, presumably her husband, out of the car and on to the wheelchair.  For the unknowing, this seems simple, but there are so many steps.  Park.  Open trunk.  Lift out wheelchair (which are very heavy, even the lightest).  Set in place.  Move legs.  Communicate.  Stand and lift.  Place in chair.  Adjust.  All this is the life of the wheelchair bound and the caregiver/wife.  I watched, and as I watched I told myself, "she has no idea that I do this very thing  many times every day."  I just watched. 

Within a few minutes Jed and Ubaldo drove up.  Getting out of the van is simple as the rear drops out and the wheelchair can just roll out.  We were on the way to the movie and Jed saw the couple that I had just watched.  He said, "go over there, I want to talk to him." 

We did.  "Hey, buddy, how are you doing. I'm just like you, I'm a quadriplegic."  He smiled.  She responded.  "He has MS.  He's been like this for 10 years."   "Keep it up, buddy.  Us old guys, we just gotta keep going."   We went on to the movie.

But "10 years" stuck in my head.  She looked good.  She looked settled.  She looked tired.  Ten years.  She's been taking care of him for 10 years.  I don't know the history, but right now, he's much less functional than Jed, and she's out there, taking him to a movie and living life.  What a remarkable tribute to them both. 

We've been at this for one year and a little more.  It's been really hard.  But 10 years?   My God!  The endurance of people is beyond my ability to understand.  We are bearing more now than we  ever thought we could, but we are accutely aware that it is nothing.  People bear the unbearable and make it look quite okay, even beautiful. 

So tonight, I offer a prayer to the couple who passed through our awareness tonight.  May they carry their burdens with grace and comfort and may they have no more.  May they know God who somehow makes it easier. 

Today I ran away

It was a most amazing day.  I ran away today.  I asked Ubaldo to be here at 8:00 and I went junking.  First I went to an estate sale, and then to an artist's home of lovely things, and then to barns, and then to the shop for a privite shopping night which was pre arranged.

I loved my day away.  I was alone and didn't even turn on the radio.  Loved the silence.  Junking is a therapy that can give health to the most ill.  Junking is down right fun. 

I bought a sign and a lady's head and a sombrero and a few other treasures that just needed to be mine and then I drove for miles and miles to see others display their beauties.   Artristy is a magnificint gift and bestowed on only the few.  It is a joy to  see how the gifted use the things of life. 

My day was spent in, "wow" and "gee" and "I could do that" (but I don't and didn't and that's why they are the artists and I am the observer.)

Then I came home.  Jed and I went to the shop for the "after hours shopping event" that was preplanned and so fun. 

It was complicated, but it worked out.  Jed got tired and I rushed him home before tending to the "shopping folks."

They had categories that they were to focus on and make purchases.
Categories were:  Communication, Conflict Resolution, Spirituality, Sexuality, and Finance.  They bought things like:  stop signs, telephones, oil, piggy banks, whips, clocks, treasure boxes  and comic books.  I would like to have been there when they shared with the group why they bought an item and how it represented a certain cetegory.  It was fun for me and fun for them. 

Later tonight, while sitting out on the deck,  I imagined my brothers were here.  Jed sleeps a lot and I imagine.  Tonight I imagined that my three brothers were here and we talked of life.  It brought tears to my eyes imagining that we were all sitting at the table together.  It would be a joy in reality.  They all know the truth of life and their truth is often  in contridiction. 

Tonight, in my imagination, we just enjoyed the presence of one another and protected our own personal truth. 

Jed is sleeping.  He didn't express concern about my "day off", but I think it was hard on him.  I can run away for a day and he can't.  That's the bottom line.  No matter how supportive or in love either one of us is, that's the bottom line.   I can run away and he can't.   What a shitty deal for him. 

writer's block

I want to write about something tonight but I can't think of anything to write.  When I taught 6th grade we had a thing called "quick write."  The  idea was to get kids to put ideas on paper quickly without the resistance of, "is this right? is this what the teacher wants?" etc.   So, I would read a passage and say, "quick write."  They had pen and paper prepared and would write a response to whaterver I had requested. 

Often kids would stare into the "never never land" and I would say, " you have to write, even if you don't have anything to write about.  If you can't think of anything, then just write, 'I can't think of anything to write, but my teacher is making me write.'" 

It usually worked and some amazing things came out of their, "can't think of anything" position.  That's where I am tonight. 

I want to share about us, but I can't think of anything that might be the least bit interesting to anyone. 

So, I'll just write. 

We went to church today.  Getting there is a process.  I am so aware that my health is critical to our existance.  We have a rather comfortable life, but it is entirely dependent upon my ability to lift and push and change and carry and drive and comfort and care.  Actually, I enjoy care giving.  I just get tired.  So very, very tired. 

Church was good.  Pastor is leaving.  That is the way with the Methodist church.  Some remarkable people at that church, like the survivor of the Baton march in WWII, or the Rotary leader who is silent but amazing.  

So, prior to church, we wake and decide to go to the backyard and have our coffee.  Sounds simple.  It's not simple.  First we must make sure that we secure Jed to the chair, as last time we went to the back yard he ended up prone, off the chair and on the ramp. 

It is surprising how heavy a man is.  I couldn't lift him and called our grandson for help.  Soon Jed was back on his chair and all was okay.  Now I know to always tie him to his chair when we go down the ramp to the shower or to watch the birds.  Going to the back yard for some R and R takes great preparation.  

The shower is outside and lovely, but the making it happen is a chore.  Transfer to the bed.  Disrobe.  Transfer to the shower chair.  Protect the legs and feet during travel to the shower. 

It's a thing called proprioception.  I had never heard of it before the accident.  It's knowing where your limbs are at any given time.  Think about it.  If you close your eyes, you know where your feet are or hands or ears for that matter. 

Jed has no proprioception.  He has no idea where anything is.  He has to see it and even then he is unsure.  So, even though he is gaining some movement, he doesn't know what is moving and where it is going. 

Must be a terrible delima for him. 

So, thinking on a less personal scale, but using the proprioception analogy.  Do we really know where anything is?   Has Jed's accident just made us all a little more aware of the tenacity of unknowing? 

It is very painful to watch this amazing man who could do anything, not be able to even lift his arm or know where his arm ( or leg) is.  But, it is beautiful to watch how he has adapted.  No one hates this more than him, but he is flexible, positive, and beautiful is his adaptation to his new life. 

Who knows.  Maybe one day he will walk.  Or not.  It doesn't matter.  What matters is the depth of knowing and the depth of love.  He is a remarkable man and I am blessed to have had 22 years with him. 

Wheelchairs from hell

You wouldn't think that getting an electric wheelchair would be a big deal.  I just need to warn you, because I wish somebody would have warned me, you have to have a degree in business, one in negotiations, one in interpretation, one in communications and it wouldn't hurt to have one in basket weaving or quantum physics, just to get a wheelchair that you want to live with for a few years. (Five to be exact because that is the payment protocal for Medicair.)

Here's what I now know that I wish I had known a year ago.  Electric wheelchairs are outrageously expensive, (as much a most cars), the competition among companies is subtle but brutle because so much money is involved.  The companies know how to play on your weakness (life change, at you mercy kind of thing.)  Wheelchair technitions are way over worked.  They are generally nice people just trying to earn a decent wage and the company that is behind them stands to make huge money from Medicair or other insurance with little apparent concern for the long hours the technitions are spending just trying to keep the darn things appropriately running and fit to the patient. 

And, when it comes to "fit to the patient,"  Oh, my, God, that is another whole deal.  We are on our fifth electric wheelchair.  It went like this.  In August of last year a guy came out and measured Jed, asked a few questions and walked out saying, "It will be about 3 month."  Naive that we were we smiled and said, "okay, we'll see you in Novemeber." 

We're generally nice people and not big complainers (that's changing) so we gave them an extra month, and then my dad died and so by the time we called,  it was January.  "Oh, yes, we're expecting that any day." (We were dumb enough to believe even that.) 

Then one day they brought a "loaner," saying the custom chair would be here soon.  Well, the "custom" chair arrived sometime in February and it was far from custom.  No tray, no adjustable back or legs, many problems.  "What about...?"  we would say,  "Any day." we would get. 

Then.  Then the original rep walked into my shop.  She and most of the reps were either fired or left and our account was caught up in a law suit............The plot thickened.  Did we want to be dealing with a sleazy company, even though we we now close to comfort?   

Our eyes begin to open a bit and we started to make demands.  Hopping through hoops began and that's where we still are.  We've gone to another company, have yet another "demo" chair in the house now and I'm thinking of building an addition just to hold the chairs.  As I speak, we have two $40,000 electric wheelchairs, one manual wheelchair and two rolling commods in the once Victorian Music room. 

Just today, I had one technition here for 3 hours adjusting a leg rest (can you believe they tried to push a chair made for another person with one leg 2 inched shorter than the other on us, without telling us?) And tomorrow at 8:00 another technition is picking up a demo and hoping for a "let's go with this one," response to the use of his fancy bells and whistles chair.  I'm exhausted. 

Today Jed started to say something like, "let's just settle for whatever," but I wouldn't let him.  I said, "Jed, you have every right to have the most comfortable and best chair available and we will not settle for, "yeah, it's okay, now just leave us alone."  He smiled and said, "That's what Jeff said."  Jeff is his doctor brother whom is held in high regard. 

So the wheelchair experience continues.  Little did I know.  Literally.  The mark up on these things must be amazing.  I would like this experience behind us, but not at the risk of settling for little comfort. 

If this can save one person from the mess we've been in, then it is worth repeating over an over. 

Ubaldo

People come and go in our lives every day.  As a shop owner I have the random folks walk in every day and most stay just that, random and unimportant.  But Ubaldo is an exception.  Ubaldo was a customer.  He bought nice things, like siver punch bowls and giant poinsettas.  He was friendly.  We were friendly. 

But Ubaldo has become such an important part of our lives that the tapestry is so beautifuly woven, who would dare take out the thread?   Our relationship began as customer/shop owner.  I knew he was a care giver from talking with him as he made purchases.  He seemed nice enough.  Then one day he bought something big and Jed delivered it.  They both told me at seperate time how much they enjoyed the other person.  "What a nice guy he was....."   So, when I was desparate and in disbeleif that rehab would actually send Jed home in his state of inability, it's no wonder that I, seeing him and his mother enter the shop, would say, "Ubaldo, are you still doing caregiving?"  When he responded, "Yes, I'm looking for a job, " I said, "You're hired."  Later I learned his mother thought it quite strange that I didn't require recommendations.  One of my good friends from the shop said, "What better recommendation can you get?  God put him there and just the time you needed him."

Now.   Now he is woven in.  He is family.  He is friend.  He is lifter of spirits and carrier of pain.  Ubaldo is our great friend.  When he and Jed are working together (stretching, standing, exercising) they are so joyful to watch.  They love each other.  (Neither of them would admit it, because, oh my God, what would that mean?), but they just love each other, easy and mean.  They cuss like sailors and laugh like little boys.  Sometimes they are laughing so hard that neither can  move beyond the  moment.  More cussing, tears of laughter, and more cussing. 

Now if you were a quadriplegic what would you prefer?  A caregiver who took care of you, or one who got under your skin and called you a "jack ass" when you were one? 

This man is a tribute to humanity.  He has taken to caring and loving our kids and grandkids, filling our home with beauty and wonderful food, and battling all the medical insurance and legal concerns that come our way. 

Ubaldo dropped out of heaven just for us.  We hope and pray that we dropped out for him too. 

Hummingbirds

Today we showered with a hummingbird.  Certain amount of trauma getting to the shower and making everything work and then there it was, the whirring sound of something alive.  I looked, and both of us, hummingbird and me, were a bit startled.  We were showering together.  Jed showering, me washing and the hummingbird trying to decide whether we were friend or foe. 

It was a moment of solitude.  We watch the news a lot. Usually they don't report about good things.  Or simple things that make us feel alive.  Showering with a hummingbird is simple and very much a poke toward being alive and in tune. 

Jed is now going to occupational therapy.  Basically, that's working with the arms.  We've been so focused on physical therapy (legs) that the arms have been ignored.  Learning the system is important while being a quadriplegic.

The system is, if a doctor recommends a certain thing it will be accepted by medicare and provided.  The key is getting the doctor, who doesn't really have a clue what's going on because he has his own life, to write a script for therapy.  That's the key word, "script."  I know a lot about how to deal with the "system" now, but it is really ridiculous.  Many times, when we've needed something, we've just made "demands" and the office manager or resident nurse has responded.  I'm sure if you asked the doctor, he wouldn't have a clue about what he has authorized. 

But, regardless of who authorized it, we are getting it and "it" is good.  Therapy is a good thing.  Perhaps it's best because it provides a structure for doing and improving.  They really don't do anything we couldn't do at home, they just provide a  structure and a destination and a promise.   Therapy is a good thing.  Doctors should just give a blanket okay to this type of thing.  They do adore the power, however. 

But, in the meantime, we have the opportunity, to every now and then live life very beautifully.  Today was one of those days.  We showered with a hummingbird and neither of us (hummingbird or human) felt as though the other shouldn't be there. 

My husband is amazing.   Most anyone in his situation after this long of time would be bitter and mean and self serving.  He is none of those.  Jed, is kind and generous and appreciative.  He is loving and very much loved. 

We recognize the hummingbird as a message from God.  We receive it as, "keep is up, I am proud of you." So, we are keeping it up and knowing that what is ahead of  us will be rich and joyful.