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Pajama Party Plus:
Where
Girls Could be Girls, in Spite of CFIDS
By Jennifer Rozines, Katie
Foran and Beth Warren
Originally published in The CFIDS
Chronicle, Fall 1997
The idea came to me in March. I was listening
to Dr.
Laura Schlessinger's radio talk show. The caller was a teen-age girl named
Michele who was struggling with serious health problems. I empathized with the
girl, as I was struggling with my own illness. I thought, "I need to do
something to help sick kids." Thus, Pajama Party Plus (P3), a weekend camp for
young people with CFIDS, was conceived.
The camp was held at my mother's farm
in
Copake, N.Y., on the first weekend in August. After advertising the camp in the
Chronicle, Youth Allied By CFIDS and on line, I had received
dozens of requests for applications from girls and boys all over the country.
Due to location and health limitations, the final count was four, all girls,
ages 14 to 18, from three states. It was a small but enthusiastic group, just
what I had hoped for.
The four were Katie Foran, 17, from
Tolland, Conn., who was looking forward to community college; Heather Kaplan,
18, from Clinton, N.J., on her way to her freshman year at Boston University;
Heather Lietz, 17, who is homeschooling in Yorkville, N.Y.; and Beth Warren, a
week shy of 15, homeschooling in Pennington, N.J.
The weekend went phenomenally well,
with
art therapy, crafts, journaling, yoga and role plays. We planned activities to
spread awareness, we supported and encouraged one another, and we rested and
napped. It all ended too quickly, and soon after, I began planning Pajama Party
Plus II, tentatively scheduled for spring break, with the addition of writing
workshops and music. I'd love to consult with anyone who wants to hold their own retreat for YPWCs. As you
can see, it's a rewarding and important gift to these young people.
Editor's note: Jennifer wrote her
initial reflections on the weekend in free verse. While the Chronicle rarely
publishes poetry, the power in these words was reason for an exception. In
telling the story of this wonderful weekend, these words reveal so much more
about teen-agers and CFIDS. We hope they spur others to give similar
gifts.
Reflections on the
Weekend by the Girls
By Katie Foran
"We are wise, wise women;
we are giggling girls."-Ani DiFranco.
I
jotted down this line from a song in my notebook and thought many times over the
Pajama Party Plus weekend how much it fit us. We stayed up half the night
talking and laughing. It was the kind of laughter that gets to the point where
you forget why you started laughing but you can't stop; the kind of laughter
anyone who's ever spent the night with friends knows well.
And yet the weekend was more than just
light-hearted fun. It was also naps and pills and body aches and heartaches and
exhaustion. Because of long years of illness, we all carry a quiet knowledge of
life - knowledge beyond our years. We know much about pain and courage, hope and
despair. This knowledge connects us.
That's how I felt when I came away
from
Pajama Party Plus - connected, renewed, hopeful. There was an immediate
understanding between all of us. We didn't have to struggle to reach that point
of understanding like with people who don't live with CFIDS. We didn't have to
explain how devastating it is, how hard. The illness was a given; we could build
from there.
And we did. We built a "circle of light"
on
Saturday night - white Christmas tree lights, gently bright around us. As I
looked at the shining eyes around me, I knew that I was not alone; these are
people who know what it's like to be sick, to lose because of it, and to win. I
knew that although we are limited in many ways by illness, each of us has so
much to offer one another and the world.
By Beth Warren
I'd
fantasized about what camp would be like, but the real thing turned out to be
far better. We seemed to have an instant bond, from having the same illness,
thus similar experiences. We didn't have to go through that awkward phase most
people do when they first meet, which was good since we had only three days
together.
I went to camp hoping to return with
new
friends and fond memories. I got all that and more. Before camp, I had a hard
time figuring out who I really was. Camp helped me put the pieces of the puzzle
together. I also felt like now I could identify more easily with other kids my
age.
I remember the last night, staying
up 'til
early morning just laughing. For those moments, I felt carefree, like a normal
teen-ager instead of a sick one. This is what life is supposed to be
like.
Wet Shoes Equals Life
By Jennifer Rozines
They came to my
house
Weighted by sleeping bags, luggage,
and problems that would make the
strongest adult crumble.
Four teen-age girls,
Suitcases filled with funky clothes, CDs,
And bottles and
bottles of pills.
One rolled in in a
wheelchair,
Legs weak, body weary, eyes shining.
The others looked as if
they belonged in the mall
Or at cheerleading practice,
Their
disabilities hidden from view.
First order of business:
naps.
It was a long trip for each of them,
The journey not just the hours
it took to get here today,
But the ordeal of years of illness.
They hadn't
been away from their parents in forever,
They admitted, nervously sharing
their fears,
Their isolation, their pain.
That happens to you, too?"
"Don't you hate it when ...?" "Have you ever felt ...?"
They stayed
up late into the night,
but tonight it was because they wanted to,
Not the dreaded
insomnia.
They joked that they were modern vampires,
And wondered if
they'd been bitten by evil
Or a virus or a parasite or
an immunization shot.
Where else could one hear a
conversation that included
George Clooney, grunge, Buddhist
psychology,
Immunotherapy and RNaseL enzymes?
They are teen-agers, wounded
spirits, medical researchers, angel messengers.
To me, they seem to be
elevated beings,
Conscious, courageous,
But to the world, they are anomalies, defective, missing
in
action.
"Nobody believed me," was
the constant refrain.
Doctors, friends, teachers doubted them,
As they
learned to doubt themselves.
(A moment of silence for the ones still out
there,
In confusion, in bed, in psychiatric wards,
Who is listening to them?)
It breaks my heart to hear
their stories.
All I can do to make it up to them is a weekend.
Out at a
restaurant for lunch.
"You girls are so quiet," the waitress
teases,
Unaware that it is their down time.
They are slumped over
vegetarian dishes,
Trying to cover their yawns and brain fog.
Anyone with body pain,
raise your hand,"
I joke. All arms rise, including my own.
But after naps
and Reiki healing, we come alive.
Tori Amos blasts through the house,
And
the talk turns to boys.
"I'm
waiting to get married until I'm old ... at least 25," they agree.
I'm in the kitchen washing
dishes,
An old CFIDS spinster at 30.
That night, we hold a healing
circle.
We share affirmations, admirations, and a bonding ceremony.
The
rituals are moving, healing, and personal.
"I keep forgetting I'm sick," one
says.
"I feel like a normal person. This is a
dream," says another. "I'm afraid to wake up."
I tell them to take these moments with
them. Hold on to this weekend.
Remember it when you feel down or
scared or alone.
I hope I'm listening to my own words.
We close with a
silly, secret handshake,
And I turn the lights back on.
I leave them to
their teen-ageness,
As I try to sleep in
the other room.
I hear the crunching of
munchies eaten straight from the bag
And of laughing straight from the
heart.
In the morning, I look in to see empty cots and flat sleeping
bags.
They are all curled up asleep in my bed.
The last hours are spent
desperately
Trying to get it all in.
They are activists with a
message:
"We have CFIDS! Hear us roar!"
They picnic by the creek.
One
wades in, soaking her sneakers.
I worry about her parents' reaction,
But
they later reassure me that it's great,
It's like a normal camper!
I guess wet shoes equals
life.
Too soon, their families arrive
Anxiously looking for asthma or
regrets or corpses.
Instead they see teen-agers
And their eyes soften with
tears.
As do mine.
Can we do this again?"
everyone pleads.
"Next year," I laugh and pretend to give in.
All I can do
is give them a weekend.
But somehow, it is enough.
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