My Sister’s Gifts

Over the four years preceding her death at 48 last November, my sister
Meredith suffered the lethal effects of Creutzfeldt-Jakob Disease
(CJD), an inherited neurological disorder which also killed our mother
nearly 30 years ago. While doing what little I could to assist her
family, I watched as the disease swiftly and systematically destroyed
her physical and mental abilities. I have likened it to watching the
evaporation of a human life in which at the end only salt flats remain.

In facing the seeming hopelessness of these circumstances, I have sought
to pick up the threads of meaning in this experience…these two lives and
these two deaths, separated by thirty years. Weaving the strands
together, a pattern has emerged which has given me cause for some joy,
despite the suffering and sadness.

Our mom’s death some 30 years ago tore our family apart. My sister tried
valiantly in all of the years since to hold us together. Sad to say, it
took her diagnosis with CJD to bind fully some of the wounds of our
family. It took CJD to nearly destroy my nuclear family, and it took a
recurrence of CJD in this generation to put the atoms back in some
recognizable form that we call "family".

I recently visited the house where we lived when my mom died. As I sat
in my car in the driveway it occurred to me that I had returned to
ground zero…where my nuclear family detonated. It was a bit eerie. It
seemed as though the house should have been shattered, like the building
left at the center of Hiroshima which still stands to memorialize their
dead. But somehow, the house looked much the same as it did 30 years
ago. CJD had acted more like a neutron bomb--killing my mother, but
leaving the structure intact. But as a result of our mom’s illness and
death, our family had suffered great structural damage. The revelation
that her death had been caused by a hereditary disorder (which had also
claimed the life of our grandmother and many of mom’s siblings), was
guaranteed to wreak havoc in the ensuing years. And it did.

My sister’s illness has progressed against a remarkable backdrop of
courage; both her own and that of her family and friends. In many ways,
this experience, for members of my immediate family, has served to
repair the tear in the fabric of time which occurred nearly 30 years
ago. Our mom suffered and died in isolation. My sister has been embraced
by a multitude of loving arms. My family suffered mom’s illness and
death isolated from one another. We have refused to repeat that sad
performance.

My sister spoke to me last May, when her symptoms had become too obvious
to dismiss as other than a repeat of our mom’s fate. She said: "I didn’t
want to follow in mom’s footsteps." I told her that none of us wanted to
go that route, if we had a choice. In fact, if I had had a choice in the
matter, as I told her, I would have traded places with her, so that she
might live. But as I said to her at the time; life is not a lending library, where

you can exchange one book for another, simply because you
don’t like the story line of that particular volume. (As I recall, my
exact words were …"Who wrote this fucking script?…REWRITE!"…). I told
her that while we couldn’t do anything to change the facts of the
matter, it seemed somehow that our family was being given that very
rarest of commodities in life…a second chance. A chance to redeem
ourselves from what, out of ignorance, we had failed to do for mom (and
ourselves) as she was dying. A chance to say those things which needed
to be said, to Meredith, and to one another. A chance to feed and care
for Meredith as she had fed clothed and cared for many of us, friends
and family, over the years. And we have done that.

Faced with this painful experience, these actions have turned what would
otherwise have been an unremittingly grim situation, into a form of
triumph. That’s not to say that my eyes don’t flood with tears once in a
while, (like right now), but there has been an experience of joy in the
midst of the sadness. I have my family back. The half-life of the
background radiation left by our mom’s illness and death are
dissipating. In some fashion, we have transcended time and space through
a form of redemptive family miracle.

For Meredith’s family and friends, this has been the type of experience
that had not only the potential to destroy life, but to recreate it as
well. I have thought often in recent months, of the scene in Moby Dick
where Ishmael; the lone survivor of the sinking of the Pequod; is saved
by the floating coffin of his Indian friend, Queequeg. Out of the debris
left on the surface after a shipwreck, there sometimes can be found the
means of salvation.

In a recent interview, Joan Rivers shared a quotation which comforted
her through the anguish surrounding her husband’s suicide. It’s worth
repeating here: "Yesterday is history, tomorrow’s a mystery, and today
is a gift. That’s why they call it the present…".

Meredith’s illness has confirmed for me the importance of living in the
present, (the only moment in which we are actually alive, except in our
memories or in our imagination) It is far too easy to get enmeshed in a
web of "what ifs", regrets, and other detours along the way which
prevent us from living life fully. It’s been said that guilt and fifty
cents will get you a cup of coffee. I’ll take the coffee, but I’m
working on leaving the guilt behind, where it belongs. And I have
Meredith to thank for that. My sister, who always knew the right gift to
give to all of us, has given me her final and most precious gift.

30 September 1998
Tim Menk
South Ryegate, Vermont

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