April 2001 - Checking in with longtime friends - Bailey

A nursing residence and day health center operated by Virginia Mason Medical Center
for people living with AIDS
APRIL, 2001 Volume 9, Number 2
Checking in
with
longtime
friends
B
A visit with former
Day Health clients
ack in January 1999 we published a story about
the “graduation” of some 30 Adult Day Health clients. They were
asked to leave because they were “too healthy.”
They all had HIV/AIDS, they were still taking potent AIDS medications,
and no one knew how well (or for how long) the drugs would work.
…still taking potent AIDS medications…
But they no longer needed the core medical services provided by Day
Health and so did not meet the stricter eligibility criteria mandated by
regulatory changes in 1999.
“A dozen of the graduates have taken action on their own to form a
support group that will meet weekly under the auspices of the Seattle AIDS
Support Group,” we reported. ‘They’re calling themselves—what else?—the
Bailey-Boushay Alumni Association.”
“…too healthy…”
It’s been two years, and that support group
is still going strong. They generously agreed to
share their experiences in living with AIDS since
leaving Bailey-Boushay.
Looking back two years
“Today, I’m healthier than I’ve been in
years and feel better about myself than ever
before,” says John Koch. “The root of almost
all my progress is planted at Bailey-Boushay.
I think of my current circle of friends—almost
all of whom went through the doors of BBH—
proud men, whose sense of worth and dignity
was upheld by the thoughtful and caring ADH
staff. I can’t help thank God for having the
Phil Pelino
…scared to be thrown back into the real world…
chance of sharing our experiences and illness in the ADH program. For
they are now my family.”
“There’s still some disappointment,” admits John. “We don’t like the
terms ‘graduation’ and “alumni.” We see it as being ‘eliminated because of
budget restraints.’ It was surprising and unsettling and scary to be thrown
out back into the real world.”
That’s a reality endorsed by the whole group. Leaving Day Health
was a wrenching experience. They got through it—and continue to live
independently—with a lot of help from each other.
They’d all gone to Bailey-Boushay House to die. New medications
Continued inside
spread notion that AIDS is over. The mistaken idea that it’s no longer a
terminal illness. The complacency and carelessness of young people who’ve
never seen friends die of AIDS.
But their prevailing outlook is positive and hopeful. The others nod as
Phil responds to a question about how they see themselves today: “Proud
of what I’ve accomplished? No—just incredibly grateful. The universe has
taken very good care of me.”
Looking ahead together
These men know they haven’t beat AIDS; they’re committed to helping
Craig Kelso
each other live with it.
…doesn’t relate to people the same
way he used to…
Health changes top the list of fears. “It’s been a roller-coaster ever
since the new meds came out,” says Norm. And now long-term side effects
of the toxic AIDS drugs are showing up across the country. Health-endangering weight gains,
increased cholesterol
levels, heart disease,
and diabetes magnify
altered the course of their disease, but not their common background as
men living with AIDS. The community they experienced in Day Health
convinced them that isolation is one of the most fearsome complications
of AIDS. Faced with an unexpected and unwanted change, they chose a
brave and healthy path—they took their support system with them when
they left BBH.
…just incredibly grateful…
the worry and difficulty of living with
AIDS.
Jack Vanderschoot
returned to the
group following the
recent death of his
partner (and former
Living in the present
support group
lot has happened in two years.
member) Trent. And
A few have returned to school and work. Bill Hall, now an honorary
two others in the
group member, is a full-time college student. Misha Dennis completed
group are out sick
paralegal training at the University of Washington and has gone back
this day (one at
to work.
home, one in the
“It was a real shock to the nervous system to go back out there,” Misha hospital).
John Koch
says. “The world has changed in ten years.” And so has he.
John feels “well
but not great.” Craig
“When I go to work, it’s a totally different world and people don’t have felt great until three
a clue what I’ve been through,” he says. “I don’t relate to people the
months ago, and now an AIDS-related illness leaves him tired all the time.
same way I used to. I’ve been through an experience I can’t describe, but
Phil’s gone from one health crisis to the next. “I appear very healthy, and
I don’t have to [explain it] here—this is home.”
I’m in great shape, but I’m in fragile health,” he says. “My virus is highly
Venturing back to school and work can be complicated by other major resistant to the drugs and has mutated through all of them.”
hurdles: fatigue, unpredictable health changes, depression, complicated
Everyone who left Day Health was promised the option to return if their
medication regimens, and compromising side effects like chronic diarmedical needs changed. Phil and several others have, in fact, been readmitrhea.
ted to the Day Health program in order to manage their medications and
While many in the group have neither the stamina nor the strength for symptoms.
“We’re still here if former clients need our medically focused services,”
school or jobs, they’re actively involved in the community. They work at
says Day Health director Brian Knowles. “Most come back because they
staying healthy and useful.
need help with medications management.
Norm Adkins (who never left Day Health but joined the group to stay
in contact with longtime friends) is taking a pottery class and works out
at the YMCA gym. Phil, at age 65, is an avid gardener—he’s transformed
“The average person in Day Health takes 13 different medications every
his apartment building grounds into what John calls “a page out
day,” he explains, “and some are on 30 drugs. Add to that more medications
of Sunset’s Western Gardener.” Craig, as the current holder of the
to deal with side effects. Even without the mental health and chemical
Washington State Mr. Leather title, travels all over the country
dependency problems—who could manage these tremendous amounts of
representing the state.
“This is a remarkable group,” says therapist Chris Tolfree, a former
Day Health staff member who now volunteers as their facilitator. “The
bonding in this group is like war veterans who’ve been in the front lines
and stick together afterwards.”
“We’re men who don’t have families,” explains Craig Kelso. “Because
of deaths from AIDS and other losses,” adds Phil Pelino, “we were the
only friends we had left. We needed one another.”
A
…knows he hasn’t beat AIDS…
…in great shape…
…in fragile health…
Many volunteer
with passion—for
Seattle AIDS Support Group (on the
Board, on the softball team, and in
the sales tent at the
Xmas tree lot), and
for Lifelong AIDS
Alliance, and POZSeattle.
There’s much that
saddens and angers
this group: the wide-
…committed to helping each other…
medication?”
The SASG support group’s achievements “have meant so much to so
many here in Day Health,” says Brian Knowles. “It’s to their credit that
they’ve created a community to get the social support they need. And it’s
a real ray of hope to all of us that 85 percent of them have been able to
manage tremendously difficult drug regimens and side effects and remain
independent.”
Leaving Bailey-Boushay was indisputably painful. Nevertheless, John
Koch feels grateful.
asked to leave because they were too healthy.
“None of us should still be here,” he says. “None of us should be flourishing as wetaking
all are today.
But weAIDS
are because
of the staff, volunteers, and
still
potent
medications
that special ‘magic’ that is Bailey-Boushay House.”
Micha Dennis
did not meet the stricter eligibility criteria
no longer needed the core medical services
scared to be thrown out back into the real world
DATE:
TIVE UP
A
L
S
I
G
E
L
Briefs
Briefs
Briefs
n
o
i
t
c
A
o
t
l
l
a
C
A
Chefs “Working
the Line” to Fight
AIDS
Chefs’ Dinner 2001 raised
more than $73,000 to
support nutritional services
at Bailey-Boushay House.
A special thanks to owner
Paul Mackay, who donated
his restaurant, and staff
from El Gaucho and
Waterfront at Pier 70 who
donated their time to serve
with style. Thank you
to our corporate sponsors
Eddie Bauer, Inc., Ellis, Li &
l-r: Ken Sharpe (El Gaucho),
l-r at
Vicky McCaffree (Waterfront
Pier 70), Scott Staples (Restaurant Zoë)
gins an
House be
y
a
h
s
u
o
n, Bailey-B
ding for
tive sessio
tion in fun
c
la
u
is
d
g
e
re
L
t
f
n
e
ds,
the start o
a 50 perc
Dear Frien
elp. With
nsidering
o
h
lth
c
r
is
u
o
re
y
S day hea
gislatu
ID
e
A
L
ly
e
We need
n
h
o
T
’s
ival.
, the state
ttle of surv
Medicaid
ay House
the state.
h
s
in
u
urgent ba
o
e cuts in
re
-B
a
th
y
C
y
e
il
b
h
a
lt
d
B
a
r
e
te
c
H
ay
atening fo
ld be affe
all Adult D
nnually.
lients wou
t is life-thre
c
u
c
e
s
d
u
e
support a
o
s
o
H
m
p
y
ra
a
ro
d people
g
h
p
s
ro
is
u
p
h
o
T
00 in
nd isolate
iley-B
a
a
,0
B
il
0
a
5
ll
fr
a
2
t
$
f
s
o
f
o
Half
ations.
at the m
the loss o
program.
and medic
assures th
ld result in
ts
m
u
n
o
ving
e
ra
w
g
tm
it
ro
a
p
d
e
n
of tr
ese life-sa
ealth
e
th
H
e
y
im
a
g
iv
funding, a
e
D
re
c
lt
y
re
du
able to
and costl
ushay’s A
cost our
complex
uld not be
’s
o
Bailey-Bo
y
w
a
d
ts
to
n
nd it may
e
a
e
li
,
iv
c
k
e
r
ic
c
u
s
o
re
e
f
n
o
m
ca
re, most
ents beco
with AIDS
Health Ca
ney as cli
y
o
a
m
D
lt
re
u
o
d
m
Without A
t the state
It will cos
.
s
Day
n
o
ti
a
nd Adult
medic
fu
y
ll
fu
t:
u
c
to
ir lives!
tell them
is budget
clients the
lp stop th
tative and
e
n
h
e
s
n
a
re
c
p
u
e
yo
duces
dR
nators an
Here how
ves and re
li
e
.
S
s
t)
e
u
te
v
c
a
ta
s
S
M
e
your
ring a 3.7
lderly alik
• Contact
and the e
ices (resto
rv
S
e
s
ID
A
re
h
a
it
Health C
cost more
r people w
Health fo
s to care,
s
y
e
a
c
D
c
.
a
)
m
e
t!
e
c
c
• Tell th
roven fa
will redu
costs (a p
ay Health
D
re
a
S
c
l find
ID
h
A
lt
a
r
e
h
re you wil
icaid fo
e
.
d
h
s
e
T
e
.
v
M
y
li
g
a
ir
h
in
m cutt
y-bous
eople the
• Tell the
rg/baile
tely cost p
.o
a
n
o
im
s
lt
a
u
d
m
n
ia
es.
0.
money, a
resentativ
ww.virgin
p
w
re
d
to
n
-562-600
a
o
0
G
0
rs
-8
t:
to
s
a
1
o
,
n
p
e
e
s
r
in
ily to do
r all state
• Email o
lative Hotl
s and fam
dresses fo
tate Legis
d
d
S
n
a
n
ie
d
fr
to
n
g
r
a
u
in
s
link
lly yo
e Wash
ay! And ra
the toll-fre
d
e
s
to
U
:
m
e
e
n
ent. We
o
th
• Ph
or write
to treatm
McKinstry, LLC.; EvergreenBank,
Hornall Anderson Design Works,
Inc.; Marler Clark Attorneys at
Law, Premera Blue Cross, Agouron
AIDA
for AIDS
Join Bailey-Boushay
Pharmaceuticals; Davis, Wright,
House for a night at the
Tremaine and Western Washington
Paramount. The winner
Beverage.
This year’s participating
il
fe-line
one, ema
h is the li
lt
a
ase.
e
Please ph
H
y
a
day – ple
re, D
a
to
c
t
r
c
u
A
o
.
.
d
e
r them
ho nee
the sam
be here fo
ith AIDS w
l
il
w
w
e
s
e
o
w
th
For
ake sure
help to m
r
u
o
y
d
e
ne
tor
Faithfully,
dministra
A
,
and
y
e
rl
u
H
mobilize
,
e
iz
g
Christine
te
a
elp us str
you can h
if
,
0
0
3
322-5
e, (206)
m
ll
r ways.
a
C
.
.S
P
le in othe
tt
a
b
e
v
ti
gisla
win this le
of four 2000
Tony Awards,
restaurants and chefs:
AIDA is the new
Axis Chef Alvin Binuya
Brasa Chef Tamara Murphy
Cascadia Chef Kerry Sear
Earth & Ocean Chef Jonathan
Sundstrom
El Gaucho Chef Ken Sharpe
Fandango Chef Chris Keff
The Harvest Vine Chefs Joseph
Jiménez de Jiménez and
Carolin Messier de Jiménez
North Hill Bakery Chefs Tracey
Peterson and Margaret
Rumpeltes
The Painted Table Chef Tim Kelly
Restaurant Zoë Chef Scott Staples
Tango Chef Bryce A. Lamb and
Owner Danielle Phillipa
Tulio Chef Walter Pisano
Waterfront Chef Vicky McCaffree
musical love story by
Elton John and Tim
Rice. AIDA is bursting with
contemporary energy that tells the
story of a nubian princess stolen
from her country, Amneris, an
Egyptian princess and Radames,
the soldier they both love. BaileyBoushay House has great, mainfloor seats on May 20, 2001. Your
$75 ticket includes a donation to
help support the care we provide.
Call (206) 720-2337 to purchase
your tickets.
Cafe Flora Hosts
9th Anniversary
Party
The fabulous Cafe Flora will host
this festive evening on June 4, 2001
at 6 p.m. Join us for delicious food,
great atmosphere, and terrific silent
auction items, as we celebrate BaileyBoushay House. Tickets are $75.00
or $150.00, with proceeds benefiting
the programs and services of BaileyBoushay. For reservations or more
information on this event contact
Chris Backous at (206) 720-2337, or
email [email protected].
Coins that Count
Program
The Coinstar Coins
that Count charitable
giving program allows you to make
donations to charitable organizations
by depositing your spare change in
one of their convenient self-service
coin counting machines at local
supermarkets.
To make a donation to BaileyBoushay House punch in 5300 as
your C.O.I.N. number. Please send
us a copy of your receipt for our
records so we can thank you. Your
jars of pennies help us to change
the lives of those we serve at BaileyBoushay House!
ApplauseApplauseApplauseApplausepFor making Valentine’s Day special for our clients: Sacred Heart Church for gifts from their Valentine’s Day Giving Tree. The
“Balloon Team”: Lisa Boulware, John Simmons, Vicki Smith, Delia Gerhard, Terri Lee, Brenna Murphy and Catherine Huston.
A special thanks to our Homefront photographer, Paul Joseph Brown, for always going the extra mile for Bailey!
Recent gifts from: Broadway Cares/Equity Fights AIDS, Charles See Foundation, Nordstrom and M•A•C Viva Glam Lipstick,
Seattle Foundation and Seattle Police Employees Charity Fund.
The following businesses that made Chefs’ Dinner a success: Alaska Distributors, Andrew Will Winery, Canoe Ridge Vineyards,
Caterina Winery, Chinook Winery, Hightower Wines, La Panzanella, Pontin del Roza Winery, Starbucks Coffee on Broadway
and Votivo Ltd.
NONPROFIT ORGANIZATION
U.S. POSTAGE
PAID
PERMIT NO. 4636
SEATTLE, WA
owned and operated by Virginia Mason Medical Center
2720 East Madison Street
Seattle, WA 98112
ADDRESS SERVICE REQUESTED
in this issue
A visit with former Day Health clients
what’s happening
wish list
April 25, 2001
Volunteer Needs:
April is Volunteer Appreciation Month, and BBH will host
• Drivers are needed for
its annual Volunteer Recognition Dinner to honor our many
Friday afternoon shifts.
volunteers. Call BBH Volunteer Coordinator David Pavlick
• Licensed Beauticians are
at (206) 720-2260 for more information.
needed to cut hair for our clients in Residential Care and
May 20, 2001
May 12, 2001
Adult Day Health.
Virginia Mason Medical Center’s Dreambuilders’ Ball. An
Please call David Pavlick at
(206) 720-2260 to volunteer.
Come and Work
For Us:
AIDA musical at the Paramount
evening of entertainment featuring Kenny Loggins at The
to benefit BBH (See inside for
Westin. Proceeds support the Heart Institute at Virginia
details)
Mason. Call (206) 583-6083 for more information.
June 4, 2001
Bailey-Boushay’s 9th
Take your interest and commitment one step further, come
Anniversary Party at Cafe Flora.
join the Bailey-Boushay Team!
(See inside for details)
Job opportunities posted on our
web site at www.virginiamason.
org/employment. We are really
in need of RNs and NACs for
For more information on
full time, part time and per
these and other events please
diem positions in our Residen-
visit our Web site at
tial Care Program.
www.virginiamason.org/bailey-boushay
“When I find myself fading, I close
my eyes and realize my friends
are my energy.”
—Anonymous
Homefront is published by the Bailey-Boushay House Office
Editor ....................................................................... Jeanne Lamont
Contributors .............................. Ellie M. David, Jeanne Jachim
Graphic Design ......................................................Fusion Studios
Photography ..................................................Paul Joseph Brown
......... Saul Bromberg and Sandy Hoover (back cover)
9/02
of Development. For placement of stories or information of
community interest, please contact:
Bailey-Boushay House
2720 E. Madison St.
Seattle, WA 98112
(206) 322-5300
www.virginiamason.org/bailey-boushay
or call (206) 322-5300.
Copyright 2000 VMMC FORM 95574 (9-01)
Bailey-Boushay House does not discriminate against qualified persons
in admissions, services or employment on the basis of age, disability,
national origin, sex, sexual orientation or any other basis prohibited by
local, state, or federal law. These laws include, but are not necessarily
limited to, Section 504 of the Rehabilitation Act of 1973, the Civil
Rights Act, the Americans With Disabilities Act, the Washington
State Laws Against Discrimination, and the City of Seattle’s AntiDiscrimination Ordinances.
Printed on recycled paper.