Choosing a Life or Living a Life? (Sharon Dzialo)

     Does that question sound pedantic?  Here I am again, stealing the blog away from the husband. (Ed. It's really ok!)  He has writer’s block OR he is stuck in chronic sorrow (his new favorite topic) OR he has been working too hard – raking, trimming, hauling and helping clean the blocked septic system.  At any rate, he gives me no static when I decide to write. 

     I went by myself yesterday to see the movie THE WAY with Martin Sheen and Emilio Estevez.  The husband does NOT enjoy sitting in a movie theater   (Ed.  He has PTSD and ADHD and .....can't sit still and focus) and I like not being distracted by his sighs of boredom and discomfort (Ed. like when he keeps checking his cell phone for the time.).  I can completely lose myself in a good movie, as well as a good book – love that feeling.  I have been in a deep funk lately and I was not really looking for distraction or entertainment.  I NEED to find my way out .

     The movie was a gentle drama about a father who travels to St. Jean de Port in France to collect the remains of his son who was killed in the Pyrenees in a storm while walking the Camino de Santiago.  Unfortunately, he and his only son had a cantankerous relationship, neither one able to appreciate the life of the other.  When the father arrives he is given his son’s hiking equipment.  He decides to embark on the pilgrimage to honor his son, spreading his ashes along the way.  The father comes to understand and appreciate  his deceased son’s life.    The Camino de Santiago is an 800 mile trek from the Pyrenees to the Cathedral of Santiago de Compostela in Spain.  People have been making this pilgrimage for a thousand years for religious, spiritual or cultural reasons. 

     I cried many times.  I also laughed.  Some people who view this film may be tempted to embark on their own pilgrimage.  I was not tempted because I recognized the stark reality that I have chosen my own journey and I don’t need to walk those 800 miles.  Ultimately, I will probably walk much farther and it will definitely take much longer than the two or three months most folks need to complete the Camino.  The father discovers the difference between the life we live (when one goes through life blindly unaware of one’s actions and how these actions affect not only ourselves but others) or the life we choose. 

     Some may not view our life with Adam post – accident as a choice but it is.  We choose to care for him at home.  We choose to seek the best possible healing modalities.  We chose to retire early and to live by the ocean .  I don’t need churches or saints.  Nature provides my access to the Divine, to the Source.  We choose to work hard daily, always seeking to improve quality of life for ourselves and Adam.

     Seeing this movie gave me a spark, a validation, a gracious reminder about the richness of a chosen life.

   
N.B. (Ed. are  editorial comments by the blog owner....Phil and so called "the husband")

Nightmares (by Sharon Dzialo)

    

  My nightmare.  You might be surprised!  It had nothing to do with Adam, his accident, the bumps in his recovery, the fear of losing him.  Nope.  I woke up in a terribly dark place this morning.  My night was filled with images of a long-time friend.  We worked together for years, talked often in that heart-to-heart way, socialized.  Then the accident.  Everything changed and our relationship changed.  She watched as I attempted to stabilize my life with Adam.  We met infrequently and she once told me that she could only spend time with me when she was feeling okay (body, mind, spirit kind of okay).  I bought that story at the time.  And, now to the nightmare.  I was back there, in our old workplace, and I saw her.  I really enjoyed our friendship – we could talk about everything.  This time I could feel a huge smile spreading over my face as I approached her.  She couldn’t see me.  She looked to the left, to the right, and she didn’t see me OR she was ignoring me, acting like she no longer recognized me or couldn’t remember me.  I stood there and watched her greet and hug other people who were in the same space.  It was so painful.  Her partner, another good friend of mine, found me and just sat next to me.  We didn’t need words.  He was always like that – hanging out, sharing the same space.  I miss him too.

         My losses – always triggered by the holidays.  I can’t get away from it, no matter how I challenge myself, my thinking, my choices.  My life is so different now and much of the change is related to what happened to my relationships when I willingly and passionately took on the role of extreme caregiver to our son Adam.  I lost most of my family and friends.  I have heard people say, “well, the phone goes both ways.”  Well, I couldn’t – pure and simple.  I accept that now.  I was not capable of maintaining my old life – work, friends, family.  All of my energy, my life force, was directed at caring for Adam and keeping myself together.  I do wonder how folks could not see this, not understand this.  I needed them to reach out, to come to me, to accept that the playing fields were no longer equal.  Obviously they would only do this if the relationship had been important to them.  Since it didn’t happen I am left wondering if folks just don’t care enough.  It was too easy to let go.  Yes, I know all of the excuses:  Didn’t know what to do.  Didn’t know what to say.  Couldn’t handle the intensity and sadness.  Had their own issues.  I’m not saying that it would have been easy.  I am a different person now with new priorities and needs.  It would have been necessary to get to know my new reality and figure out a way to be present in that space and time.  Very few tried. . .

      
 Now, this sounds like it’s all about me.  Well, I re-visit the nightmare and realize that this is my son’s reality.  Few people see him, know him, love him.  He is invisible.  It’s heart-breaking. But, wait a minute.  I am heart-broken; Adam is not.  I live with the awareness of separation, of loss.  He lives in the moment, laughs in the moment, doesn’t worry about the past or the future.  I have so much to learn from him. 

Chronic Sorrow....Understanding That Which Evades Understanding

        Chronic sorrow " is a set of pervasive, profound, continuing, and recurring grief responses resulting from a significant loss or absence of oneself (self-loss) or another living person (other loss) to whom there is a deep attachment.  The way in which the loss is perceived determines the existence of chronic sorrow...a painful discrepancy between what is perceived as reality and what continues to be dreamed of.  The loss is ongoing since the source of the loss continues to be present.  The loss is a living loss." p.26

       "While chronic sorrow is conceptualized as being normal and understandable, there are no formal and customary social supports and expectations, rituals or recognitions of the catastrophic loss, since the person who is the source of the loss continues to live.  Adaptations are usually drastic and disorienting.  Simultaneously and absurdly, the person who is the source of the sorrow may at times be socially unrecognized, as if he or she does not exist.  If there is no existence, there is no loss; therefore  the grief is unacknowledged and unaddressed by society." p. 29

       A powerhouse book for every parent of a disabled child or adult child.

Ozzie the Duck: Murdered in Westfield, MA

Ozzie, the duck

       I have recently read numerous posts by fellow bloggers about the invisibility of the disabled and the continued stigmatization of people with handicaps.  I wondered why. Various theories and models are spun in a genuine search for understanding and a thirst to educate the general populace.  Today, I was struck by a bolt of something.  Ozzie, the Westfield Park resident Muscovy duck,  was murdered by some teen morons.
       Don't get me wrong!  I think that this was a totally detestable action which cannot be explained away by youth.  These teens were neither endowed with intelligence, nor compassion, nor any other positive human quality.  I believe they should be apprehended as quickly as possible and castrated so that their mutated genetic material cannot be passed on to anyone with whom they may unfortunately copulate and ultimately inseminate.  Just cut their balls off!
       Now do get me right!  This story is three days old.  It was in the Western Massachusetts papers, local and statewide television stations and New England Regional Newspapers (Boston Globe).  Police are out in force looking to apprehend four idiot teens and now there is a reward being offered for information. People are aghast!  The media blitz is ceaseless. Now people have established an Ozzie Fund.
       The park ranger told us about how Ozzie took up residence three years ago and never migrated to Mexico, like he is supposed to.  Everyone fed the fella!  The teens are accused of venting "blood lust"; "taking advantage of the trust of an innocent animal"; and,  "oh, my god, the poor baby!".  I know that a Facebook page has been created for Ozzie to get the duck justice.  And, on and on, new television shows, new articles in the media and wailing and crying continue daily.

       Then I thought about some of the outrageous crimes directed at the disabled that I have both written about in this blog and continue to read about.  Usually, one page hidden away, usually no follow-up, usually no outcry for justice!  What the fuck!  Something is wrong with the media and something is wrong with people in general.

• My post about abuse and rape of the disabled in New York group homes.  Outcry, follow-up, sanctions, tv specials, etc?   Nada.
• A guest post on my blog about parents who are out-raged because their precious kids have to take small precautions to save the life of a child with a severe peanut allergy.
• The disabled are the most likely population to be the target of serious crime
• An autistic boy is murdered by his care giver in a New York group home.  No follow up stories or great sense of outrage!
• Or, if you like, 50 stories of abuse of the disabled from a single source.
• Or a 26 year old with CP who had multiple fractures from his care givers in a nursing home in Florida.
• And other references are available ad infinitum on the web. Just google "abuse of the disabled."

       So why is the world in an outrage about a duck and not repeated instances of abuse of the disabled?  The disabled are also innocent, trusting, responsive to kindness and susceptible to abuse by strangers.  I am plagued by the indifference of the media and the general populace.  I am plagued by this dis-ease of invisibility.  I am plagued by the lack of rational explanation for this pervasive injustice.

        This post is a partial purge, interrupted by a lack of explanation or model.  I am hoping in the follow-up post to examine some principles of evolutionary psychology in an attempt to explain the unforgivable...the invisibility of the disabled and the indifference of the general populace.

Funny Is As Funny Does....(Adult Content over 6 years old only)

       Everyone (except me) likes fall in New England.  Hurricane Irene burnt the leaves, so no color but brown.  Dark when you wake up, dark when you go to bed.  My koi are hibernating so you can't watch them swim around.  Flowers and garden are dead.  And it's cold early...I could go on, but why be shitty.

       So to make my self happy, I am posting my favorite FB shares: they never fail to bring a smile.  Hope one of them makes your day!  If you live where the sun is shining and it's warm and you don't have a disabled kid and a dog who "honks" at 4:00 am, you don't need this post.  Others maybe helped.....

I can't take credit for any of these creations, but then I don't know who to attribute them to.......

Vacation...Getting Away From Life (A Sharon Dzialo Post)

Phil's Vacation Resort

 I needed a  retreat – also, knew that it would look very different from Phil’s recent get-away.  He checked into a hotel for three days, slept blissfully, wrote a blog, read a book, walked by the ocean, ate “sinfully” delicious food and had NO RESPONSIBILITY.  I want to mention here that Phil has NEVER done this before and I prodded, pleaded and eventually forced him to go.  I have, in the past, when Adam was in stable shape, taken days away, even a 12 day trip once to Hawaii to visit friends.  Adam was in school then and we had several  good people to help with his care.  This, unfortunately, is no longer our reality.   Phil, however,  could not leave his home, his son, his safety (the old PTSD STUFF. . . ) Until recently -  If you follow our story you will know that the last year has been very difficult – many, many challenges with Adam, ones that left us with that “special fatigue” only experienced by the extreme caretakers of the world.  We were both desperate for a break and, given that we have a gravely diminished support system in place, we needed to take our retreats separately.

Kripalu Retreat Center

I traveled to a yoga center in Western Ma., intending to sleep, walk, participate in some gentle yoga classes, eat healthy food, read, and “if the spirit moved me” connect with some other folks.  RUDE AWAKENING – I signed up for a dorm room with five roommates, all of whom had arrived and settled in before me.  Only a top bunk bed was left, with other people’s clothes scattered about – so welcoming (NOT).  I grabbed my book and tried to find a comfortable chair in one of the many sitting areas.  The Center was packed, people coming and going, chatting, chatting and more chatting.  I couldn’t read so I eventually found my way to a yoga class.  Relaxing? Peaceful? Comforting?  No, no and no.  My body was screaming – couldn’t turn my head to the left, had pain running down the middle of my back and this happened just because I was laying flat on the floor.  Wake-up Call!!!!  Hate it when that happens.  My body was talking to me – too much stress all bottled up.  I hobbled back to my room, met one roommate (nice enough) and then settled onto the top bunk worried about the night ahead because I ALWAYS have to get up in the night to use the bathroom. I was envisioning myself slipping down the ladder, crashing on the floor and further harming my fragile body.   As I was trying to drift off another woman entered the room, loudly announcing her presence, flossing her teeth with great drama, brushing her teeth in the sink while loudly spitting and then setting up a laptop on her bed with the lights on.  I could hear her typing.  Tossed and turned all night and, finally, in the wee hours fled the room, took a shower and made a plan.

Kripalu Center

I requested a private room – YES! And, was settled in within an hour.  I scheduled a therapeutic massage and it was perfect.  A tall, gentle man sat me down, listened to my story (which I told in two sentences) and kindly and compassionately talked with me about honoring mothers and, especially mothers in extreme circumstances.  I cried and he then proceeded to massage the stress from my body.  I must admit that I fantasized about taking him home with me – Phil and Adam would have loved him too.  And, my daughter – well, she loves massages. . .

So, I learned that I needed and wanted to be alone.  This seems like a contradiction when you know the circumstances of our life.  With the exception of one committed and loyal therapist who appears at our door every ten days for a four day stay AND visits from our daughter, her boyfriend and Tiki (the grandpuppy) we lead a very solitary life.  A few family visits each year, phone calls, casual conversations with the neighbors and one or two new friends – that’s it.  Being alone afforded me the luxury of NO CARETAKING, unless it was moving in my own direction.  I went to bed when I wanted, walked, read, took a nap.  I didn’t need much – the simple bliss of no responsibility for even a few days. . .  

Sounds like a new plan – every few months?   

Alone is OK!!!