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 This is a wonderful piece of writing. We need to hear
from you more often.   Carole H.


--- William Harshaw <[log in to unmask]> wrote:
> 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.
>

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