CODI: Cornucopia of Disability Information

Hijacked to Holland: Travel Tips for an Unexpected Journey

Hijacked to Holland:  Travel Tips for an Unexpected Journey

The format of the allegory presented in this workshop,
recounting true life experiences of a stroke caregiver, was inspired
by an essay by Emily Pearl Kingsley about caring for a child with Down
syndrome.

Gottlieb: On the afternoon of January 28, 1982, my husband and I were
busy making plans to celebrate our 32nd wedding anniversary. But life
had other things in store for us.  Instead of celebration, we found
ourselves in the hospital emergency ward. We had a stroke.

I say "we" because both our lives were irrevocably changed and will
never be the same again. One minute my husband was an energetic
attorney, and I had just finished my master's degree, graduating with
highest honors. We led an extremely active life, were involved in
community activities, traveled, and entertained friends from Europe.

The next minute (literally) my husband was struck down, forced to
retire from a profession that he loved and adjust to a subdued way of
life, and . . . needless to say . . . our income was cut to the bone.
Where before we had shared our various responsibilities, now I was
immediately forced to take charge of everything . . . everything . . .
including all that I did before, plus being responsible for my
husband's health and our finances, a job that continues to haunt me.

For over two years, I also had to do all the driving when Art went
through a long series of seizures. It was sheer hell. As for morale,
forget it. It simply didn't exist. What was this fiercely independent
Aries male supposed to do with himself after he woke up in the
morning? All of his adult life he had gone off to work . . . or school
. . . or both. If he wasn't an attorney or an activist in the
community (which is how he viewed himself), who was he? He hadn't a
clue. And, to top things off, he was wound up as tight as a cuckoo
clock.


To make matters worse, just when his career fell apart, mine suddenly
began. Shortly after I earned my master's degree, the Long Beach
Press-Telegram hired me to be their art and theater critic. My husband
resented the hell out of it. Life should have been sweet, energizing
and exciting . . . instead, each day grew more wild and chaotic. I
never knew what was going to happen next. Art ran around creating
havoc, while I trailed behind him picking up all the pieces.

A Stranger Lived in My House
 
I was an absolute wreck. I'm not exaggerating. I could tell you horror
stories that you wouldn't believe. There was a stranger living in my
house and I didn't know why; what the hell was going on? "Structure,"
I kept running around screaming. "We've Got to Put Some Structure in
Our Lives. You Can't Keep Bouncing off the Walls All Day Forever!"

No one explained anything to us. We didn't know the signs of right
hemisphere damage, and neither did a lot of the doctors, let me add,
or the therapists . . . even some stroke facilitators.

Like the Los Angeles specialist (who shall remain nameless) who
misdiagnosed my husband's behavior as "manic depressive," put him on
lithium, and locked him up in the psycho ward for a week. Or the
gestalt therapist who, knowing nothing about brain damage, treated him
for months (out of our dwindling savings, I grimace to say) for being
psychologically and emotionally disturbed. Pretty sad.

So there we were. Think of a rowboat with two people in it, each with
one oar. When both people know where they are going, they pull
together and the boat goes straight ahead. But when one person pulls
forward while the other person pulls backward, in circles, or not at
all, the boat loses direction, flounders, and eventually capsizes.

I was such a wreck, I thought of leaving more than once. A lot of
wives do. They simply can't cope with the disintegration of their
husbands, their homes, their families, their lives. But I didn't, and
obviously neither did many of you or you wouldn't be here in a
workshop for caregivers.

And so, little by little, one step at a time, one day at a time, one
week at a time, things began to fall into place. We started going to
support groups. We did research and learned what was happening to us,
specifically. We changed our patterns and redirected our focus. Art
reinvented himself as a writer, and we developed a brand new life
style based on an entirely different rhythm.

Right hemisphere involvement affects understanding and cognition,
comprehension, in-depth analysis, spatial perspective, appropriate
behavior, temperament, judgment, temperature, ability to deal with
abstract symbols such as time, a checkbook, a calendar -- "little"
things like that!

It was not easy, and we're proud of our accomplishments. I have to add
that through it all our kids have been terrific.  We all know that
we'll never have the life we had before, or the life we dreamed of --
that life is gone forever. But we try hard to concentrate on what is
realistically possible, and make each day as rich and meaningful as we
can.

A Complete Recovery?  Not Quite

Today people come up to me and say, "Your husband looks terrific!
Isn't it wonderful that he's made such a complete recovery?" Well, yes
and no. Yes, he does look great. And no, he hasn't made a complete
recovery. He never will. We've been living with the brain damage from
his right hemisphere stroke since 1982, learning more about it all the
time. We'll live with it for the rest of our lives. It can cause a lot
of hurt and embarrassment, I will admit. Especially initially when no
one understood the reasons for such erratic behavior.

You'd think that after 11 years I'd have a quick, all-purpose,
25-words-or-less answer to give when people inquire about my husband's
health. But I've never come up with one. Especially after his heart
attack in 1990, and all the subsequent complications that followed --
including his cardioversion and chemical hepatitis last November. We
were in the hospital three times last year! 1992 was the absolute
pits! As for 1993, so far, so good . . . "poo-poo-poo and no hubris,
thank you." We're grateful for small favors and tender mercies.

But what am I supposed to say when people ask me about Art?  "Just
fine, thank you, just fine." No. Somewhere between "Just fine" and the
long drawn-out story that no one really wants to hear, there has to be
a better answer. So I wrote this little allegory which I think
everyone here will understand. I call it . . .

Hijacked to Holland
 
In 1962, my family lived in Italy; not vacationed, mind you, lived;
there's a vast difference. All six of us lived there through June
1963. The kids went to school and learned Italian. Art went to work
and negotiated NATO contracts, and I did all the things that an
Italian signora-mama-moglia does to keep everybody going. A lot.

Then, 11 years ago Art and I made plans to go back to Italia, this
time on vacation to revisit old haunts and see all the exciting places
we'd missed when we lived there. We wrote letters to friends; made
airplane and hotel reservations in Roma, Firenze, Venezia, and
Sicilia; rented a little red sports car, drooled over travel
brochures, planning our itinerary . . . even bought new clothes. I was
so excited I packed weeks before our flight, and if you knew me you'd
know that was a miracle.

Then off we went with hearts pounding and spirits soaring. We could
hardly wait for the plane to touch ground so we could hear that
beautiful, melodious, emotional, excitable Italian language.

The plane swooped down -- a very rocky landing I might add -- and the
stewardess said, "Welcome to Holland. Thank you for flying by the seat
of your pants. We hope you enjoy your stay here."

"Holland?" we shouted. "There must be some mistake. We're not supposed
to be in Holland. We're supposed to be in Rome!"

"Sorry!" she replied. "There's been a change in flight plans, a bad
electrical storm over the ocean. The captain was forced to land here
in the north. You're lucky you're still alive."

"Well," we said, "sorry yourself. We have other plans. This is not
where we choose to spend our golden years; people were expecting us in
the sunshine. When can we get out of this freezing place?"

"You can go," she said to me, "but he can't; he must stay here for
good, whether he likes it or not." After 32 years of marriage, I
couldn't do that; we'd grown up together . . .  we'd built our lives
together. "Forget about Italy," she read my thoughts, "that plan is
kaput. Holland will be your home from now on. Welkom."

"But what about the coliseum, Michelangelo, the Sistine Chapel, the
Ponte Vecchio? What about singing gondoliers, visiting Ravenna, Siena,
and the Uffizzi Palace?"

Stranded in the Snow in a Foreign Land
 
"Tough luck," she said, and off she went, leaving us standing in the
snow in a foreign land in a state of shock. We didn't know a soul, the
land was flat as a board -- all reclaimed soil dredged up from the sea
-- not beautiful and diverse like Italy with its dramatic Alps in the
North, sunny Riviera in the South, the green vineyards of Tuscany and
colorful fishing boats in Napoli. Just gray. And flat.

We looked up in the sky and saw a flock of beautiful, brightly colored
birds flying south for the winter. But we were stuck on the ground
next to a gaggle of gray geese who honked and hissed at us from the
canal. Our dreams were also flying away.  All we could do was shiver
and cry.

We knew nothing about Dutch culture or its language -- all that
gargling and spitting -- we couldn't understand a word that was said.
So we started our lives all over again from scratch . .  . very slowly
and self-consciously . . . like babies learning to walk and speak for
the first time. We found that the Dutch are an honest, down-to- earth
people, hard-working and pragmatic; no nonsense is tolerated, and
everything in sight is spotlessly clean.

While our friends flew back and forth from Los Angeles to "O Sole Mio"
on jetliners, we pedaled old-fashioned bikes through the snow on
cobblestone streets. While our friends sunned on the Riviera and skied
in the Alps, we inspected the dikes and patched the holes. While they
wore designer clothes from the House of Milano, we clopped around in
wooden shoes and milked the cows.

While they ate saltimboca, fettucini, oso buco, and frutta de la mare,
we ate green herring, Gouda cheese, and flaxen bread.  They drank
Barolo, we drank beer. They went to La Scala, we watched TV. Then
somewhere around the middle of who-knows-when, we started to settle
into our new country like we used to settle into our mountain cabin
(before we had to give it up because you-know-why).

Settling Into Holland

We stopped longing for Italy and started to concentrate on what we had
. . . what was possible . . . what was beautiful in Holland.  One day
at a time . . . within the boundaries of Holland . . . we could have a
good life . . . a quality life . . . a creative life.

We started planting tulips and going to the Concert gebouw .  . . and
watching the raindrops on the canals . . . and taking long walks among
the windmills. We waved to the birds as they migrated south and didn't
envy their fine feathers any more.  We turned our sights to Rembrandt,
Vermeer, Van Gogh, and Mondrian for their creative spirit.

We don't have late night, after theater suppers any more, but we do
get out to the theater. We don't go to Westwood openings, but we see
an occasional senior citizens' matinee.  We don't plan dynamite
cocktail parties, but there's enough energy for small, intimate
dinners. We can't take off on the spur of the moment, but with enough
advance warning, we can get away for a cruise . . . or an Elderhostel.

We have activities together, and activities apart. Each of us writes
separately, and we still have totally different styles.  We've even
published a book together, a joint venture that involved the best of
both of us.

In fact, as long as we keep the vision of Holland as a very special
place to live, we'll do just fine, "dank U well."  (That's "thank you
very much" in Dutch, as I'm sure you can figure out.)

Is it perfect? Are you kidding? We step in cow paddies every day. Do
we argue? Didn't we before? But we do it less, we honestly do it less.

Do you believe me? Why would I stand up here completely vulnerable if
I were lying? Am I

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