I thought the list members might be interested in the following piece of
mine.

I would appreciate any comments that anyone would care to make


 You might ask, "How does  Bill Harshaw cope with every member of his family
having a chronic medical condition?" (Bill - Parkinson's, Esther - chronic
progressive Multiple Sclerosis, Howard - ulcerative colitis, Emily - chronic
depression and an eating disorder and Megan, our first child dying when she
was one day old).  The answer is "in general well, and some days better than
others."

 Each member of the family has come to terms with their illness in different
chronological time and in different time frames.  Howard and I have had an
easier time than Esther and Emily because new surgical procedures were
available to, in Howard's case cure, and in my case mitigate the symptoms of
PD and colitis.  Esther and Emily have to cope with medical conditions which
have no drug therapy and in which the depression and eating disorder are
themselves symptoms of a deeper problem respectively.

 Do I feel that God is testing me? Sometimes I feel Job-like in my fury.
Then I recognize that there is a significant hereditary component to each
condition - both my mother and maternal grandmother had Parkinson's;
Esther's father had Graves' Disease (as did Esther too) and ankylosing
spondylitis, both of which are immune system disorders; Esther's mother's
twin sister had multiple sclerosis; and Esther's mother and Esther and her
siblings have been subject to bouts of severe depression -  which when
combined with a  toxin - ranging from pesticides and fertilizer to stress
and contaminated water, produces a ‘double hit' that the human body cannot
resist.  We live in the double hope that medical science will discover the
causes and develop cures for these conditions and that we may have the
courage to live our lives to the full.

 The following paragraphs give the most recent example of how experience can
aid in building coping skills.

 One morning in early May 1999, our 28 year old son Howie ‘phoned us to say
that his ulcerative colitis was excruciatingly painful.  We could feel the
pain in the sound of his voice.   Howie told us that he had an appointment
with his gastroenterologist the  next afternoon.  We urged him not to wait,
but go to Emergency at once.  He did.  That afternoon he was in St. Paul's
Hospital in Vancouver with emergency surgery, an ileoestomy, scheduled for
the next evening.  In the end,  four feet  - about one-and-a-quarter
metres - of Howie's large intestine, the whole thing, would be removed.

 Ulcerative colitis is a chronic disease of the bowel characterized by
sores, ulcers, on the inner surface of the large intestine, or colon, which
are extremely painful.  Digestion is difficult.  Another   manifestation of
the disease is a lack of control over bowel movements.  These  features,
combined with the medication he was taking having become toxic had led to
Howie becoming less gregarious and somewhat reclusive.

 I got the first available flight to Vancouver to be with Howie.  As I
walked into his hospital room, at noon the day after his operation,  he was
asleep.  I said "Howie, its Dad.  I'm here". He woke up surprised to see me.
Tears welled up in my eyes as we hugged each other.  I felt very vulnerable.

 Over the next week as we talked, I was thrilled by Howie's positive
attitude.  One statement of his hit home.  "I'm regaining control of my
life!"  We had successful surgery for chronic illness in common.  The true
dread of everyone who has a chronic disease is the lack of control they have
over their life."I hope I can be as successful as you have been, Dad!".
Where once our lives had been run by the diseases we,  first me and now
Howie, had leading edge high technology surgery.   We have been doubly
blessed with a second chance at life.  What we make of it will determine if
we are worthy.

 I was reminded of Nietzsche's aphorism

 He who seeth the abyss, but with eagle's eye - he who with eagle's talons
graspeth the abyss: he hath courage

   With chronic disease, you have to be angry enough with the disease that
you say "I will not permit this condition to run my life any more."  You
must, therefore, not only have been diagnosed with a chronic illness, you
must experience it for a period of time, which is unique to every person,
before you can decide. The decision cannot be a theoretical one."  You must
go to the edge of the abyss, look in and decide that this is not the future
that you want.    In T.S.  Eliot's play Murder in the Cathedral the chorus
says:

 we are afraid in a fear which we cannot know, which we cannot face, which
none understands, And our hearts are torn from us, our brains unskinned like
the layers of an onion, our selves are lost in a final fear which none
understands

And that surely is the point.  No one desires the bottom of the abyss once
you have seen it.  The line from Dante's Inferno bears quotation: "Abandon
every hope who enter here." Hope must never be abandoned.