Like Strangers
Like Strangers, that's what we are
Darling how can lovers pull apart so far
Like Strangers, how can it be
Only days ago, we loved so tenderly

I love you, truly I do

And I hope deep in your heart you love me too

Let's forget that we've been angry

Let's be lovers like before

And swear not to be like strangers anymore

I still choke up when I hear the Everly Brothers version of this song. My greatest desire for the outcome after the inevitability of a future that included HD became apparent was that the disease would be accepted, faced, and God's providence for dealing with it be accepted. I so longed to be the one:

I bless the day I found you

I want to stay around you

And so I beg you, let it be me

Don’t take this heaven from one

If you must cling to someone

Now and forever, let it be me

Each time we meet love

I find complete love

Without your sweet love

what would life be

So never leave me lonely

Tell me you love me only

And that you’ll always let it be me.

While there were many moments of rejection during the last 10 years of our life together, Karen always knew that she could count on me to respond when she became truly desperate. There were miraculous moments of joy. On one occasion, I had prayed for just 2 more weeks of my "normal Karen" - a year after she had left to live on Catalina Island. She requested a vacation in Malibu, and we had those two weeks together. God is good - all the time! Then delusions made me the devil incarnate, and I despaired of ever feeling her embrace again. Karen ended up in a convalesent hospital after 18 months of in-home care. I took my daughter and grandson to visit, and she and my son's family all visited as I hung back in the hall, longing to hold her and assure her that we were always there for her; but unwilling to upset her with my presence. When they all came out to leave, I requested them to ask if she wanted to see me; and the demonic delusions were gone. We embraced; we cried; and she seemed to understand that she was where she needed to be. Our visits for the remaining year of her life were all good. We prayed together; we sang hymns together; and we talked of a dream future that she would never know here on earth. I truly believe that only Satan could devise such a a cruel disease; and only God could show such grace in dealing with it. I can only encourage others to realize that in the face of cruel, unbearable sadness there is always hope for joy that is unexpected.

The Right Sad Thing. I think I will start off with a counter example, directly related to the disease that took my Karen from all of us. Huntington's Disease - HD is kin to both Parkinson's and to Alzheimer's. It is believed to be caused by a mis-shaped protein in the brain that causes death of certain regions of the brain. Parkinson's is characterized by uncontrollable tremors and weak or poor muscular control. Alzheimer's is characterized by a loss of cognition - the ability to think, but generally leaves good muscular control. HD is characterized by a loss of the supervisory areas of the brain - the part we use to judge how well we do things, loss of muscle control, and various psychiatric symptoms; but usually not a loss of cognition. The person with HD loses initiative - the ability to start doing what needs to be done. They may appear to be incredibly selfish - unaware of the negative impact their behavior has on others. Yet there is an inner awareness, and the negligent or emotional behavior may be concealed from all but a few intimate acquaintences for a long time in the disease process. Thus, a young mother may conceal abuse or negligence of her children. While my children were grown before the disease showed any symptoms in Karen, this phase will point to a problem that exists with many psychiatric illnesses and society's negligent approach to those illnesses.

Specifically, our legal and health care system puts the wishes of the patient ahead of the needs of the family/support system - often to the grievous negligence of those in dire need. Cosnsider this example:

When Karen had her first psychotic "breakdown" she locked herself in a hotel room for a week and refused care, food, water, etc until the managment called me and informed me of the situation. When I authorized a psychiatric evaluation, she was taken to a hospital, and without diagnosis, allowed to sign a "no contact" order. Consider the absurdity of this. The patient is not judged competent to be released to care for themselves - judged to be a direct danger to themselves or others, yet they are competent to trigger a complete block of information regarding even their whereabouts to anyone for a period of 6 weeks or even longer. Senators, Health Department directors, and judges all assured me there was nothing that I could do, except pay whatever bills the hospitals/caregivers decided to send.

Fortunately, I had the resources to deal with the financial burden; and Karen recovered enough control to spend a few more months in her "little piece of heaven on earth" before needing a full time caregiver.

But consider the plight of a young father who came to me for advice in dealing with his HD wife and small children. His wife's major symptom was an emotional antipathy towards him, and lack of initiative in caring for their small children. The children were unfed, unwashed, neglected; but not physically or emotionally abused directly other than hearing mom's unwarranted charges against the father. Because mom had not been diagnosed with HD - a personal choice that meant she could live with denial expecially due to the "unawareness" that is universal in the disease - this young father could not avail himself of even limited assistance that might be available. After many months of frustration; he had decided that his only option was to divorce his wife; obtain custody of the children; and re-marry in order to provide a suitable mother for his children. He had, at least in his mind, no other option to protect his children. Legally, he is probably right. When I voiced my concern for his plan from a Godly perspective; he broke off the disucssions. My belief is that regardless of the human perspective; God will find a way that meets with His approval. For me, he always has. He has often over-ruled my choices; because I have prayed that He would; and tried to listen for His directions when I have made a choice.

I wish I knew how things worked out for this family. If the divorce did occur, I am pretty sure I know what happened to the wife; because I saw what happened to my mother-in-law. Her husband did not know that his wife's bizarre, unfaithful behavior was the result of HD - there was no way to diagnose the disease at that time. Our health care and legal system allows these people to "abandon themselves". Somehow, allowing those incapable of responsibility to make irresponsible choices is preferred to providing secure, loving, respectable care. The patient cannot be forced to accept care, including diagnosis; and if diagnosed and medically conserved cannot be forced to live where they do not wish to until they become completely incompetent to the point they are an immediate danger to themselves or others. (They can, of course, be put into jail or prison for their anti-social behavior; and their disease symptoms often are mistaken for intoxication.)

At this point, I do not know what we can do to help the HD patient without a major change in social thinking. I do know that we can try to understand and support the families of this disease to prevent their complete breakdown. We can encourage, advise, even financially help them to obtain adequate insurance; document emotional breakdowns to protect innocent spouses/children, shelter, and most of all lift them up in prayer, then embrace them as they make "right sad choices" for their own and their dependants lives.

Here is where I am going to need some accountablility and encouragement. I have been told that some of my story can be an encouragement to others, and that sometimes my writing is actually amusing. I had to believe that during the last few years -to give some purpose for the painful things I went through. (Although I don't believe we have to understand the reason behind everything that happens to us. We are the created, not the Creator, and His ways are often beyond our understanding. We have to be willing to live by faith, not by sight.)

This past week, I overheard a radio program in which a desperate mother of a severely handicapped child called in asking for advice in dealing with decisions regarding the child's care, especially since it affected not only the child, but two older, young children and limited family resources. I heard a piece of advice that I took to heart, and from it have chosen a title for the works that I hope to someday publish. "The right Sad Thing" describes the choices in life that lead to some sadness regardless of the path chosen. You see, God never promised us happiness. I believe there is a perversity that pervades much theology that promotes happiness instead of joy. "Man that is born of woman is of few days and full of sorrow" is not a "happy" thought. The expectation that a faithful life, worshipping God, integrity, good works, etc can somehow assure God's blessing us with happiness is bound to be un-fulfilled. Bad things do happen to good people. Good things do happen to bad people. Yet still, God is good. "All things work together for good to those that love the Lord, to them who are called according to His purpose" is NOT a lie. It is not a promise of happiness. It is, instead, a declaration that there will always be at least one right sad thing that can be accomplished by chosing to trust Him; and that the reward for chosing that right thing will be worth it; not only in eternity, but here on earth. The reward may be the joy of sacrifice, the joy of being a good example; or even the joy of martyrdom; or, as in the case of Job, the joy of restitution beyond our wildest hopes.

Years ago, I studied the beatitudes, especially the meaning of the Greek word sometimes translated as "Blessed" or "Happy", and found at least one scholar who explained what a difficult concept the Greek word tried to convey. His view was that the closest thing to an accurate translation was "Your joy is not controlled by Fate." What this means is that you can CHOSE joy regardless of what HAPPENS to you. Fate, happens, happiness, and unhappy all relate to events that occur. These events can be "good", "bad", or "neutral", and even all of the above depending on one's position relative to the event. Joy, however, relates to how one deals with those occurrences.

In my next posting, I will start giving examples of very sad events that lead to joy.

I am going to share some of those right sad things with you here in this blog; and I invite you to participate. You are invited to comment, read editorially, criticise, send contributions, but mostly to hold me accountable to continue to add to this frequently - at least 5 times a week.

This time I will spare you the photo of my x-ray. After two days of climbing up and down narrow slippery trails, ravines, etc., I managed to slip on some gravel not 20 yards from our truck, fall with my left foot underneath me, and fracture my fibula. All this while in the isolated community of Hydesville, CA with my airplane and father-in-law with me, and contemplating how to get all of us back. My foot was stabilized by the local emergency room, and my good friend flew a flight instructor up to accompany me back to the Bay Area. I am learning several things that I did not know before. 1) It is stupid to put off going to the emergency room when you suspect your leg is broken. 2) Crutches are incredibly inconvenient. 3) Health care today is certainly not about the convenience or needs of the patient. 4) Safeway's shop-on-line service does not really guarantee delivery on the same day you shop if you finish before 9:30. 5) Shopping in an electric cart is a pain. 6) Carrying groceries with crutches is nearly impossible. 7) I have an incredible network of people who want to help me; so I need to lighten up and demonstrate the dignity of being in need, and letting them help me. (Boy! Is that tough for an independent cuss like me?) 8) I need to get a personal locater beacon if I am to continue solo wilderness trekking.

"Time to Say Goodbye". Sarah Brightman concluded a beautiful memorial to my wife who died suddenly near the end of August. Her imprint on the lives of so many has been a blessing, as was her passing - which spared her from a grim, isolated death due to neuro-degenerative disease. Family and friends grieved at her burial in a peaceful setting; then a host celebrated her life and offered condolences at a memorial service.

The picture was taken only 3 and 1/2 years ago; and was the last time she was able to joyfully interact with the family in a private setting. The image will forever remain one of my favorites.

I thought I had grieved her loss long ago when her illness forced a separation; but the reality was that I was grieving for my pain then. Now I can remember the good times we had and the blessing she was to me. Now the grief is for the beauty that I have lost. Praise God that our beliefs are in a God whose plans are to give us hope and a future. Still there is now a huge hole in my life - not that I am not busy or that I sit around depressed - it is just that a shawdow of grief keeps creeping in. I will get by. I will be happy. I will be joyful. Yet I will always miss the world class beauty that was mine for a while and who gave me so much for which to be thankful.