Random Thoughts On Death, Dying, and My Own Struggle to Live

            Two of my friends have died this month, so I am taking time to reflect on death.  It is inevitable—the natural end to life, yet we encounter it with shock and surprise.  I confess that I don't know the answers to our questions about death and dying and am as shocked and surprised as anybody else when someone passes.  Why? 

            Once, when I was in a meeting about disability services, I commented that we need to have transition services in place for when the parent-caregiver of a disabled adult dies.  The leader dismissed my comment by saying, “Yes, they might die.”

            I countered this dismissal with a promise.  “No!  I can promise you with one hundred percent accuracy that every, single parent-caregiver will die!”

            My remarks were ignored, almost as if I was being obscene.  During my time working with state disability services, they never set up a protocol for dealing with this transition.  It would not take much to have a page in a file listing people to contact, resources and an action plan for when the caregiver of a client dies.  It would serve the client to have a plan in place.  It would save the state time and money to have a plan in place, yet this didn’t happen.

            What is it that causes us to look upon death with so much denial that we cannot make a plan and put it in a file?  For believers in many faiths, death is just a passage to eternity—a return to our real home.  Yet we want to deny that death happens.  Why?

           I think the answer lies in our own grief.  It hurts so much to be separated from someone we love.  I think the grief of separation effects both the dying and the survivors.

  

           Personally, I see death itself as a pleasant passage to what lies ahead.  Still, I am reluctant to leave behind my loved ones.  I feel compassion for their sense of loss and grief, so I grieve with them and fight to cling to life.

            Clinging to life was a choice and challenge for me during and after my stroke and during my cancer treatments.  Living involved some tough choices and suffering.  It hasn’t been easy.  In addition to the pain of illness, I was well aware of the presence of total love and peace just around the corner that we call death.  Turning the corner would have been so much easier than fighting to live.  I chose to live partly because of my love for my family, but mostly because of a sense that I have unfinished business here.

            During my struggle, I started writing Lies That Bind.  In a sense, it was the story about my struggle to live, and the conflict between my desire to be with the One who loves me unconditionally and my attachment to those in this imperfect world.  This is not a sugary sweet story about life and death.  It is a passionate story about love.  I came to understand death as part of our passionate life love-story.

            I used adultery as the central theme in Lies That Bind because our society treats the topic of death much as it treats the topic of adultery.  We know adultery is a betrayal.  I think under much of our grieving, we see death as a betrayal.  Our loved one has abandoned us. 

            Just as Jake and Celia in Lies That Bind needed to unravel the lies that separated them, we need to unravel the lies that cause us undue grief when someone dies.  Death is not abandonment.  We need to remember that our loved one still loves us and we can still love them. Yes, we will miss our loved ones.  Still, they have made a natural passage whether we think it was timely or not.  We need to learn how to deal with this transition, to have a plan in our file. 

            How do we grieve?  How do we find wholeness when part of our life has been ripped away?  The answers to these questions will be different for each person, but we need to answer them.  The answers to our questions about grieving involve telling our-selves the truth and finding truth.  I sense that the answers involve living our passionate life love-story and recognizing that love is the eternal spark that each life passes on to the next generation.

            

Blog Hop: M'TK Sewer Rat by Delinda McCann

We are hopping our way through some great reads.  For those who aren’t familiar with a blog hop…it’s a lot like a treasure hunt—once you find something on one blog, hop over to the next blog link for more treasure.  In this case, the treasure is a wealth of new and exciting books.  Some are still being written, some are just being released.  Either way, for fiction lovers…it’s a treasure and I’d like to thank Sandra Humphey for tagging me to participate. 

Sandra’s wonderful books can be found at http://www.kidscandoit.com/

Here are the questions I was asked, with my answers.

1)    What is the working title of your book?  My latest is coming out as a two-book set.  M’TK Sewer Rat:  End of an Empire and M’TK Sewer Rat:  Birth of a Nation. I split the story so my readers would not injure themselves carrying the book around.

2)    Where did the idea come from for the book?  My work as a social psychologist brought me into contact with the governments of several third world countries…Oh for pity’s sakes, the voices in my head compelled me to write the story.

3)    What genre does your book fall under?  My publisher classes it as general fiction.  I wish there were a genre for social fiction.  Of course, Jake classes the work as his autobiography.

4)    Which actors would you choose to play your characters in a movie rendition?  This story spans a number of years so this question is a challenge.  Jackie Chan would play Mr. Wu, of course, and Sean Connery would make an excellent Professor Ingleman.  Natalie Portman has the looks to play Leah, Jake’s wife.  Pierce Brosnan could do Jake’s Papa and I’d choose Catherine Zeta-Jones to portray Mama’s vitality and sense of humor.  The story has many characters so I could include Will Smith as Christian VanGelen, Penelope Cruze as Sophia Uzara, Lucy Liu as Margaret M’TG, and Orlando Bloom as Andrew Corbain.  But who can play Jake?  Who has the swarthy good looks, cheekbones, athletic build, power and energy to play Jake?  Who is small in stature but can fill a whole room with energy and vitality when he walks through the door? 

5)    What is the one sentence synopsis of your book?  Jake came from the slums of M’TK to lead his people to freedom.

6)    Is your book self-published, published or represented by an agency?  Writer’s Cramp Publishing, a small publisher, is publishing M’TK Sewer Rat.

7)    How long did it take you to write the first draft of your manuscript? The first draft took five months.  I’ve spent ten months on the rewrites, edits, and proof reading.

8)    Who or what inspired you to write this book?  I first fell in love with President Jake Jaconovich in Lies That Bind.  I wanted to learn more about this amazing man who captured my heart, so I wrote his autobiography.

9)    What else about your book might pique the readers’ interest? I like to describe my books as compound complex stories, which… (“Delinda gets too intellectual.  This is my autobiography.  I am the son of a laborer.  I grew up in the worst slum in my country.  I am very proud of earning the title The M’TK Sewer Rat.  Yes, I am really the one they called that, but half of the stories you hear are myth.  As far as I know, I did not kill the man when I was seven.  I do confess to stealing the boats that worthless excuse of humanity called Fortenac locked up.  I tell of my first love, Fiona, and how Papa sent me to stay with cousins when he met her.  Yes, under the laws of the time, I was a smuggler.  I give full credit to my cousin Prosecutor Margaret M’TG for straightening out that mess.  I confess that my friends and I engaged in several adventures that would turn my hair grey if my son were to do such things, but that is how life was then, and how the son of a laborer behaved.”)

10) What other books in your genre would you compare this to? The first book that comes into my mind is Kim by Rudyard Kipling.  (“Ahem, My Dear Readers, This is my story and there is none other quite like it. Personally, I like many books written in English.  As a college student I read all the James Bond books by Ian Fleming.  I considered myself quite as daring as Bond.  I read way too many westerns by Zane Grey and Louis L’Amour.  I loved the Prisoner of Zenda and read it many times in my youth.  As a law student, my favorite book was To Kill A Mockingbird.  We discussed it in all my classes.  I would say that from that book, I learned that a humble person can make strides toward justice for all.  Finally, I’d like to thank you for taking an interest in my story and to thank Delinda McCann for being such a patient scribe.  Sincerely, President Jake Jaconovich aka The M’TK Sewer Rat.”)  

For next week, I am tagging

Dan O’Brian  http://thedanobrienproject.blogspot.com/

Steven Nedelton  http://www.snedelton.com

Maggie Tideswell  http://maggiestorm.blogspot.com/

Rosemary Adkins  http://www.extraordinaryireland.blogspot.com/

        

Bryan Murphy  http://www.goodreads.com/author/show/6439905.Bryan_Murphy/blog

A Time to Heal

In three weeks, half of my friends are going to be very disappointed.  The election will be over and in each contest one candidate will win and one will lose.  Hopefully, we can all look forward to freedom from caustic ads and the obsessions of our friends over the election.  After the election, I hope all of my friends are still speaking to each other.

I’d like to offer a few words for finding common ground and making peace with each other.  First, forget the angry words spouted by entertainers.  We’ve heard some particularly nasty comments this election season.  When the election is over.  It is time to recognize that some famous people are willing to manipulate the populous for their own profit.  Let’s ignore them and move on toward a goal of loving our neighbors.

I’ve heard numerous stories about the evils that this candidate or another will commit if elected.  Reality check:  None of us can foretell the future.  Will any elected candidate behave in the predicted fashion—either for good or evil?  I don’t know.  Nobody knows.  When the election is over, it is time to stop worrying about what someone might do.  You’ve done the best that you knew how in your choices at the polls.  Now, it is time to trust in God to provide for you and practice loving your neighbor.

We’ve tried, over the past few months, to dialogue on issues close to our hearts.  In many cases both the pro and con sides of the discussion have wanted the same outcome.  Our disagreement has been over how to get from where we are now to where we want to be.  Do we regulate more?  Less?  About the same?  Do we pass new legislation?  Do we enforce existing legislation?  We disagree on how to accomplish our goals.  Most of those disagreements are based on ideologies that will not work without compromise.  It is time to set aside our favorite opinion on how to accomplish our common national goals and practice loving our neighbors.

Yes, our country has a great deal of work to do to restore economic stability, safety in our communities and the security of all members of our country.  We may be battling some huge forces of evil, but I think if we work together, we-the-people can grow our county to a position of physical security, economic stability and peace.  The government cannot do this for us even if they were inclined to try.  As long as we are divided we cannot heal.  Our first step is to set aside our anger and sense of self-righteousness.   We need to take a look around us and take action based on love for our neighbors.

Now is the time to ask yourself, “What can I do to help heal my nation?”  I think we will all find different answers.  For myself, I will continue to write books, garden organically, care for my foster daughter and prayerfully worship God.  Healing is possible, but it must begin with all of us making the decision to love our neighbor.

Realistic Outcomes.- Fetal Alcohol Spectrum Disorders

September ninth was international Fetal Alcohol Spectrum Disorders (FASD) Awareness Day.  We have been using this as an international day of awareness since 1999.  The first year we focused on ringing bells to commemorate the day.  We tried to get the local news media to feature news articles on the disability.  Over the years, we have had a number of activities to draw attention to the disability.   One year Christine Gregoire the governor of Washington State filmed a public service announcement on the dangers of drinking while pregnant.

The media has changed over the past thirteen years.  This year many participants chose to post to Facebook or Twitter.  I posted to both places and started to read through the posts from other advocates as horror swept over me.  The messages focused on the lifelong nature of the disability saying, “People with Fetal Alcohol Spectrum Disorders may need lifelong supports in order to work and maintain relationships.”  I had to wonder, “What are these people thinking?”  No. NO. NO! That is not the norm for individuals with Fetal Alcohol Spectrum Disorders.

Perhaps I have been in the field longer than most of the other advocates.  Perhaps they have not read the long-term studies.  Perhaps they are living in fantasyland.  People with Fetal Alcohol Spectrum Disorders do not have the rosy outcomes the above statement indicates.  I suspect that many advocates hope for the best for the people they love.  Certainly, I know some individuals with FASD who are able to hold down a job and maintain relationships, sort of.  Dr. Ann Streisguth’s long-term studies indicated that some people with the disorder might be able to hold down a job, or maintain family relationships.  She did not find people in her caseload who were doing both.  It is theoretically possible.

The far more common outcome for people with FASD is not so successful.  Most of the young people I met twenty years ago are bumping along with a great deal of support.  Some are in assisted living, which works, sort of.  Some have a great deal of difficulty with drugs and alcohol.  Some are still in prison.  Some live in the community with constant support from aging parents and the government.  Most receive Social Security Disability payments.  Some receive Section 8 housing.  Most receive food stamps.  The government financial support is in addition to being in constant contact with a caregiver who serves as an external brain.

What is it about this disability that causes it to be so devastating?  The answer to that question lies in the nature of the brain damage caused by prenatal exposure to alcohol.  Humans have a small structure in their brains, the corpus callosum, that serves as the main right to left pathway for brain activity.  It connects facts with meaning.  Together with parts of the brain stem, it allows us to learn from cause and effect.  Both of these structures are vulnerable to prenatal exposure to alcohol.  Dr. Ed Riley at the Univ. of California at San Diego was the first to find the characteristic brain damage associated with prenatal exposure to alcohol.  Dr. Streisguth replicated his study.

This characteristic pattern of brain damage produces some predictable behavior problems.  Individuals with FASD cannot learn from their mistakes.  They cannot connect rules to behavior.  They just never develop adult level judgment and reasoning.  Most individuals with FASD possess the sense for safety of a three year-old.  Of course they have adult bodies and people expect them to learn adult responsibility, which is just not going to happen.  With our foster daughter the three-year-old judgment is a life threatening disability.  She absolutely cannot keep herself save around the general public.  She projects vulnerability.  Yes, she has the intellectual capability of working.  She is tired of being sexually exploited because she cannot repel predatory men.  She stays home and lives on the pitiful income the government provides.

There is another aspect of this disability that is very very difficult for people to grasp.  Perhaps some day I will find the magic words to express this better.  Most of the people diagnosed with FASD live life on the margins, receiving public assistance if they are lucky.  Many get free housing and food in prison.  The state pays and pays and pays through the criminal justice and welfare systems for this disability.  The individuals who have the disability pay and pay through heartbreak, abuse, poverty, loneliness and failure for their entire lives.  The industry that produced the product that causes the damage makes wonderful profits.  The liquor industry fought warning labels on their products.  They fight taxes to cover the cost of the damage their product causes.  They reap huge profits without consequences.  Perhaps those with FASD are right actions do not produce consequences—at least not for the liquor industry.  They did for the tobacco industry.  They did for the paint industry.  They do for anybody else who makes a product that causes damage when used in a legal and socially accepted manner.  After many years as an advocate in this field, I am tired of the heartbreak from watching the devastation caused by prenatal exposure to alcohol.  I am sick of the lack of appropriate response from our government and justice communities.

Freedom of Speech vs Freedom

By Delinda McCann Author Lies That Bind

A few weeks ago, several things happened to make me sit and think seriously about our right to free speech.

The first event occured when I decided I must un-friend a former colleague on facebook.  It sounds like a small event, but it troubled me.  The colleague had a habit of posting quotes, quips and cartoons that were demeaning to a certain group of people.  She applauded name-calling, critical-judgmental ideas, and the public use of words that I sent my children to their rooms for using.  The strange part of this event was that I didn’t particularly disagree with her views and values.  I was disgusted with how she expressed those views and values. 

I also felt that by continuing to accept this person’s manner of speaking and example of name-calling and put-downs as humor, I was accepting another issue. Demeaning speech sets a horrid example for our children.  If we can say anything we want even when it infringes on the rights and dignity of others, why cannot our children bully the kid with disabilities?  It makes the bully feel good and powerful. 

But this is the nature of freedom of speech.  My colleague was free to express herself any way she chooses.  If I don’t like it, I can walk away or unfriend her.  The problem is that we don’t always have the option of walking away.

Shortly after my uncomfortable decision to unfriend a colleague, Rep. Akin blessed us with his remarks about legitimate rape and women’s bodies.  Setting aside the insensitivity of his comments and my emotional reaction to his lack of empathy for victims of a crime, his comments about women’s bodies were outright lies.  Some of my friends tried to tell me he was trying to prevent abortions in making these comments.  What?  Does your perceived morality of your cause give you permission to spread lies?  Does the right to free speech include the right to use lies to influence the law of the land?  Does the right to free speech give a lawmaker the right to condone rape if the victim is not beaten within and inch of her life? Is that the free speech that is covered in the constitution?

How do you walk away from a lawmaker whose lies can influence laws that affect the most private parts of our lives and bodies?  Where does the right to free speech end, and violation of the rights of others begin? 

While women of the US were shaking their heads or fists over Rep. Akin, half-way around the world, in Russia a shock-rock band, Pussy Riot was on trial for trespass and exposing their privates in a church.  Many celebrities and the news media jumped on the trial as a freedom of speech issue.  What?  I saw it as a trespass and indecent exposure issue.  I agree with the principle of civil disobedience and have even participated it. However, even in a case of civil disobedience I would give the bystander who is offended by my actions or strongly disagrees with me the right to walk away.

After watching the security video of the Pussy Riot demonstration, it occurred to me that if this group of women had come into my church and performed exactly the same act, in Russian, which nobody would understand, my pastor would call the police, just before he had a major anxiety attack.  The women would be arrested, charged, and, if they did not make a plea-bargain, they would be tried.  Yet, the event was reported and supported as a freedom of speech issue unique to Russia, as if displaying one’s crotch in church was acceptable in “free” countries.  So what about the rule of allowing others to walk away?   In this case it is possible that visitors to the cathedral could cover their children’s eyes and leave the scene of...well…the scene, but the nuns and priests, who work there did not have that option.  Furthermore the bystanders had come to a private place, a sanctuary, where they ought to be able to reasonably expect a crotch-free opportunity to pray.

Freedom of speech is and should be one of our most cherished rights.  The problem with our current cult of free speech is that we allow freedom of expression to overshadow Freedom—with a capital eff.

How do we restore a balance of liberty for everyone?  We need to start thinking and questioning.  Is this person’s speech infringing on someone else’s rights?  Is this the truth?  Would I allow my child to talk that way?  Do others have the freedom to walk away if they disagree with what the speaker is saying or the way in which it is said?    

The abuse of free speech calls for outrage.  It calls for us to walk away or un-friend.  It calls for individuals to not only turn off their TV, but to write to the sponsors of shows that support lies and demeaning speech.  Most of all, it calls for each of us to stop and ask ourselves some serious questions about what we say, and how, and where we say it.  

I have a guest blogger today, Jocie DeVries.  Jocie is the former executive director of the Fetal Alcohol Syndrome Family Resource Institute.  She has published numerous articles on the topic of FASD.  She is an extraordinary advocate for social justice.  I was occasionally amused when I was in state committee meetings to hear of the fear and respect Jocie inspired in the halls of our state capital.  Today she is telling the story of an event that occurred earlier this summer.

****

On July 27 of this year I woke-up to the sight and sound of a strange man leaning in the French door of my bedroom - whispering to my granddaughter, Amanda.  She had been sleeping on a pallet on the floor of my bedroom.  My husband Don and I have five grandchildren and having them come for a sleepover is a special time for pillow fights, ice cream, sharing secrets, telling stories and deep, relaxed sleep. 

But this summer morning some sort of a pervert had opened the screen door from our deck and was whispering to my granddaughter.  Watching him invade the privacy of my bedroom was mind numbing and my first reaction was to try and convince myself that this situation was some sort of a bad dream.  But as reality set in, I realized this man didn’t just stumble into my bedroom.  He went to a lot of trouble to get there.  We do not have windows in our bedroom.  We have French Doors that open out to an enclosed deck.  A deck that I once thought was cozy and perfectly safe.  It is built up and off the ground and is completely surrounded by a three foot, sturdy lattice railing on top of the deck. 

The point is - the deck has no access from the ground.  This man had to jump up on the deck and then crawl over the railing.  It was hot that night so we had the French Doors open, but we weren’t afraid because we had a gun up in the closet and our big dog in the bedroom with us. The most surreal thing about the whole scene was that the dog didn’t whine, growl or bark.  We were incredulous, at some point had this pervert made friends with the dog?

The intruder had opened the screen door and" was whispering to Amanda, asking about her age (she is 13). Then he said, Oh.  You look much younger."  He held his hands together, held them up to his cheek to mimic sleep, and asked her if everyone else in the house was still asleep! 

About that time my husband woke up, jumped out of bed and started running toward the French Door, yelling.  At first the man just mumbled incoherently and then he turned and jumped over the railing.  My husband dialed 911.  At 70 years old and with leukemia -my husband couldn’t jump over the railing so he ran out of our bedroom toward the front door trying to catch the intruder before he got too far away. 

Amanda’s dad, (our son Dennis) had been sleeping in the guest bedroom across the hall, but when he heard the commotion he jumped up and raced out the door to help apprehend the intruder.  Thankfully, the 911 operator had two Snohomish County Sheriff’s Deputies at our house in a couple of minutes and with Dennis’ help they caught the intruder. The Sheriff’s Deputies arrested him and took him off to jail where he remains until his September trial.  The Snohomish County Prosecutor claims he could only charge him with “criminal trespassing and possessing drug paraphernalia”.  I learned that the intruder has been convicted of dozens of felonies.  The typical sentence for criminal trespassing - if - he is convicted is between 4 months and one year in jail.  I am too scared to ask what will happen if prosecutors offered him a plea bargain. 

I always wondered how a pervert could enter a house completely undetected and abduct a child.  Now I know, all you need is one glitch in your security plan.  In our case the glitch was the quiet dog and the gun was out of reach stored in a closet. 

An even scarier after-thought is that the night before, our five year old granddaughter was sleeping on the pallet next to Amanda.  She is so tiny that this pervert who we have since learned had been convicted of raping a child - twice; could so easily have taken one step into the bedroom, scooped her up, perhaps without even waking her, and we would have never known what happened to her. 

Our sense of self-confidence - that we have always been diligent in taking care of our children and grandchildren - has been forever shattered.  On the other hand we are filled with joy and thanksgiving to God that this wretched man didn’t have the opportunity to touch any of our grandchildren – this time.  Hopefully Amanda will be comforted somewhat by seeing her grandfather and daddy fly into a (controlled) rage to chase that pervert into the waiting arms of the Snohomish County Sheriff.  And of course counseling should help.

I get sick to my stomach whenever I think about how dreadful this situation is and feel so stricken that other children are at risk from a Department of Correction System that is sloppy in registering and monitoring sex offenders.  

I read recently in a Seattle Times article that a Seattle defense attorney has asked for a review of Washington’s sex offender registration and notification system because he considers those laws “unfair”.  Is he insane?  Why are sex offenders the ones who get full disclosure and legal protection in this state? 

The Snohomish County Prosecutor’s office has been secretive, evasive and condescending toward our inquires.  If it's true that this man has such a long, violent history with dozens of felonies then why is he still roaming the streets stalking and grooming my granddaughter while she is asleep in bed? 

This seems very strange to me.  We need to know the truth and have full disclosure on the risk we are under since this guy apparently has a strong history of stalking and violating protection orders and may only get 4 months in prison – if – he’s convicted.

■          What happened to the 3 Strikes Law?

■          What happened to all those sex offender laws we passed in the 1990’s that were suppose to protect the children of Washington State?  Have those laws been revoked?

■          Where’s the accountability in the Washington State Department of Corrections? 

■          Hello?  Is anybody home over there?

Jocie DeVries - A very frustrated grandmother;

  

Choosing love - Family Party

            For me, getting together with my cousins is better than drinking champagne.   There is something about looking into their eyes, seeing those smiles and hearing their voices that energizes me.   This year, I finally made the commitment to host a party with my family. 

            I know that I wrote about family parties in Lies That Bind and the family members sniped at each other and formed cliques.  We didn’t have that type of party.  I seldom see a group of people who interact with as much love and respect as my cousins.  I love to watch them sharing their stories and retelling the old family stories.  I can almost see bonds forming, wisdom being passed and family members finding solid ground.

            The magic of a family that treats each other with love and respect seemed to permeate even into our pets.  For Saturday dinner we had fifty-eight people and eight dogs present.  The pack of dogs occasionally wandered through the crowd of people, but mostly they went off and played doggie games with each other.  They never got rowdy or growly with each other.  They were just a joy to watch as they explored my acre of gardens or followed the preschoolers.

            The preschoolers were another delight.  Our family is at the stage where another generation is having babies.  We had two tiny babies and three children who were three.  The three year olds started with sharing a few toys and running some trucks around then they discovered the fountain and my child sized pails for holding cut flowers.  The children industriously watered all the weeds in my garden.  When it was time for my niece to take her son home, he’d gotten totally in to the cousin thing and spontaneously hugged his three year-old, fourth cousin goodbye.  Those two caught the magic.

            It all sounds idyllic to talk about a family dedicated to loving each other.  I admit that I got hundreds of heartfelt hugs of gratitude for hosting the party.  We laughed a great deal.  From the outside it may appear that we don’t have problems.  It may look as if we all grew up in amazing, stable, loving homes.  No.  Most of us have had cancer—many of us have had it more than once.  I am officially classed as disabled as are some of the others.  Not all of us had two parents who knew how to parent.  Some of the cousins who came had a rough childhood.  Still each person came to the party and gave and received love.  How is it that we can get together and share such love that even the tiny children and dogs treat each other amiably and share the opportunity to explore the world together?

            I think the answer to that question lies in the decisions we make.  I could decide to recline on my sofa and whine about being tired or in pain, or I could get up and do something that makes me feel better.  I can decide to discipline myself to rest when my body needs to rest.  Most of all I can decide to love and be happy.  As I talked to my cousins, I understood that they have made the same decision.  We need to decide to treat each other with respect.  People must make a decision to love.  Yes, we’ve all been sick or disappointed, but have made the decision to be happy, love and find new life adventures.