A year ago, my husband was contemplating a surgery that
would involve the implanting of a tiny electrode in his
brain. If successful, it would mitigate against his
Parkinsonís symptoms, allow him to take less medicine,
lessen his side effects and give him more independence and
quality of life. The surgery took place on September
26th and for 10 amazing days he seemed like a new man.
And then, in a flash, his colon decided to twist and
everything fell apart. First the brain surgery.
Then colon surgery. Followed by hernia surgery. And
finally, three months ago, total hip replacement surgery,
all in less than nine monthsí time.
All this week, I have found myself singing a line from
Joseph and the Amazing Technicolor Dreamcoat in my mind.
ďA something of something, a flash of light, my golden coat
flew out of sight. The world is plunged in darkness.
I am all alone.Ē It drives me crazy that I canít
remember the words to the two ďsomethings.Ē A clash of
drums, maybe. But do drums actually clash? Cymbals
yes. But drums? Iím close, I think, but I donít quite
have it. It canít be thunder because the beat would be
off. I search frantically through my CDs and tapes,
sure I have the show among my belongings, but itís not
there. And did the world turn dark or did it more
Itís as though, if I can get the precise lyrics, I will be
able to solve the mystery of this particular musical message
and why it wonít stop singing in my head. I throw myself
upon the mercy of Google and am able to find a site with
lyrics, but only the first two lines of each song are played
as a tease to the listener who will then be compelled to buy
the CD. I am too impatient and penurious to wait
before starting to write. At least Iím reminded that
the song is entitled ďAny Dream Will Do,Ē and that the
lining of the coat of many colors, according to the Andrew
Lloyd Weber version, is silver. I donít know if I ever
focused on that before, even though I had the happy
experience of being the stage director for two productions
of ďJosephĒ in my distant past and think I should be
familiar with the details.
Without an answer, I try to write a poem instead about the
turtle excavation last Friday night to which I brought my
daughter and 10-year-old grandson who were visiting from
Boston. I am struck by the woman dressed entirely in
white who dons the same kind of rubber gloves worn by the
nurses in the hospital and the paid caregivers at home when
they tend to my husbandís bodily functions. From my
perspective, she is surprisingly heedless of the knees of
her white pants when she kneels on the beach; yet, like a
surgical nurse, she carefully lays out, in lines she has
drawn in the sand, the 80 rubbery, ping-pong ball sized
unfertilized eggs and 15 hatched shells the male volunteer
brings up from the nest. It is a disappointing night
and very unusual. There are no live baby turtles in
need of rescue down at the bottom. And usually the
numbers would be reversed: 80 hatched who have hopefully
made it into the sea, though many would have been eaten
already by predators (such are the odds of turtle survival)
and 15 unfertilized.
I think my poem might be interesting if I can round it out
by telling how when I return home to relieve the caregiver,
there is no crowd of fascinated observers encircling us, no
group of volunteers passionate to save us, and when my
husband needs help in the bathroom, it seems pointless to
use gloves. ďI do not use the glovesĒ would be a
wonderful last line for my poem; Iím convinced of it, but
Iím not clear about what to say before that, so the poem
turns out as barren as the turtle nest and never gets out of
the hole it is in, much less into the creative ocean or off
the mundane ground.
So now I have resorted to stream of consciousness in order
to see if thereís anything I might yet learn. It
occurs to me my unconscious is trying to tell me I am
currently standing on the stage of my life without a
Dreamcoat. ďA something of something, a flash of
light, that golden coat flew out of sight. The world has
turned to darkness. I am all alone.Ē That might
be a little melodramatic; Iím pretty sure Iím not in a
full-fledged depression, but somehow there is a relationship
to this song and the way my emotional life now stands.
My husband is recuperating well. His surgeon says he
is ahead of schedule in his healing. Though walking
laboriously because of his 22 years with Parkinsonís, and
unable to be on his own, he is once again able to walk with
a walker much of the time, after having been confined full
time to a wheelchair for two months before the hip
replacement. We have loving and helpful children,
caring friends and, when needed, professional help. We live
in an apartment with beautiful views. There is a lot
for which to be grateful. I know this. But life
has gotten narrower and more confining. My husband is
frustrated and sometimes angry that he is not more
independent; I am more impatient.
In writing this, I realize I am currently without a dream.
This is a painful realization. The illusion of control
I had in regard to my husbandís Parkinsonís disease has
disappeared. And, worst of all, the sense of mutual
purpose and harmony of interests we enjoyed together during
our Florida retirement seems, in larger part than I wish, to
have slipped away as well. I hope this is temporary,
but how can I know? Our sense of hope and optimism is harder
to come by some days; that silver lining is harder to find.
While Iím not ready to give up, the realities are clear.
We are in a new phase of life, and new challenges await us:
how to accept and cope with the growing demands of a
progressive illness with all its attendant emotional
complexity and confusion; how to find the necessary balance
between giving care and providing safety while continuing to
respect my husbandís obvious need for autonomy; how to find
interests we can still enjoy together despite new
limitations and changing needs on both our parts, and,
finally, how to discover and manage an independent life for
myself away from illness and responsibility without feeling
guilty that in doing so I am abandoning my husband and
leaving him behind.
ďThe world and I we are still waiting. Anticipating.
Any dream will do. Bring back that colored coat, that
amazing colored coat. Bring back that colored coat.
That amazing colored coat.Ē
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