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The Grief Suite
As told by Betty Stern to Family
AIDS Support Network, edited by Janet Tabin
I think everybody remembers
the precise date that somebody calls and gives you really
bad news. It was two days after Robert’s birthday.
My husband Marshall and I
had called him to say happy birthday. He was living in New
York and was in the Fiji dance troupe at the time. He sounded
absolutely awful. “What’s wrong? What’s happening?”
“The doctor told
me I have shingles and it’s very painful and it really
hurts, and I just feel terrible.”
It was a Wednesday night.
Robert called us and said, “I’m going into the hospital
for an emergency CAT scan, and Charles is taking me and he
wouldn’t let me go unless I called up to tell you ‘goodbye’
and to tell you why I’m going into the hospital—because
I’m HIV-positive and the doctor thinks I have a brain
tumor.”
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We were devastated and absolutely
stunned. Even though we had known Robert was gay for many
years, we just didn’t put two and two together. The phone
call was like a goodbye phone call. I love you and goodbye.
He did not know what was going to happen to him.
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Even when he was very young,
Robert was the most artistic child in our family. It was pretty
obvious even when he was about three or four. He was great
at improvising dances. He was interested in all kinds of artwork.
At a very early age, like seven or eight, he started using
a camera for filming. He did some cartooning. He created puppet
shows. When he was a little older, I can remember one incident
involving everybody in the high-rise building we lived in.
There were about 38 children under the age of 12. Robert organized
them and directed a play. We really thought he was a great
kid, but he was very ebullient and high-spirited and sometimes
got into big trouble because of that. He really grew up to
be a very ‘common sensical’ person as well as a
very creative person. He was a very terrific kid—very
outgoing.
When Robert tested positive,
he didn’t tell us immediately, we didn’t know for
nine months or so. And as much as I had read about HIV, I
had a lot to learn. It was very scary.
That’s why I advise
people who are HIV-positive to disclose as soon as they possibly
can handle it emotionally. It’s difficult, but it’s
better to do it while you’re still healthy than when
you are not. The fact that Robert couldn’t tell us immediately
made me uncomfortable at first. I felt we had a really great
relationship. But I’ve come to realize he just couldn’t
bring himself to tell us such bad news.
It’s a very difficult
thing to do. But it is extremely important. It brings great
peace of mind once you’ve told people. It’s a great
relief, and that relief lets you focus on the real important
things: the disease and how to cope with it.
We told our family as soon
as we knew what was going on. I think that it was very helpful
in the whole course of the disease for close family members
to know what was up. We told people they should tell other
people because we wanted everybody to know in the family.
I think it’s really part of an educational process for
other people to hear that. Their whole attitude changes toward
the disease and toward sexuality. In a way, you’re educating
people and also helping yourself.
When Robert called to tell
us he was going to the hospital, we flew to New York to be
with him. He was in the hospital for two weeks. They did not
find anything. They took all kinds of tests. He had a wonderful
doctor, but he was in a terrible hospital. They were not used
to dealing with anybody who was HIV-positive, and we went
through the usual stereotypes of donning masks and gloves
and gowns. The doctor came along and was furious. He took
the sign down from the hospital room door and said, “This
is not necessary” and “Take those gowns and masks
off.” But they were still very leery—fearful. And
the whole staff was afraid to come into the room. It was very
strange and very weird and you felt like you, as well as your
son, were a pariah.
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But I’m glad we went.
We really supported him emotionally, and, of course, the implications
of this were just so far reaching. In those days, they really
didn’t have a hand on a lot about HIV. He was sent home
without any real diagnosis of what was wrong with him or what
needed to be done and there was no medication, as I said before,
for anything.
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We left Robert in New York.
He stayed in New York for a couple of months recuperating
at his sister Julie’s house. While he was there, he had
friends that flew up one week at a time to take care of him
and be with him because Julie was working full time and wasn’t
around.
Robert came home to Chicago
to live permanently. He decided to be closer to family. He
became involved with Test Positive Aware Network and he met
Michael, through TPAN. They became partners and moved in together.
He was independent for a long time.
Learning to cope was a major
lesson, and he turned his skills and his abilities into a
real positive thing for his life. He went to Atlanta with
a friend and formed this company called The Blue Rider Movers.
His friend’s skills were more in the technical end: lights,
sound, and sets; and he did the choreography. He wrote several
dances and they all pertained to AIDS and the experience of
learning that you have HIV and what you do with it. He actually
incorporated it into sort of a biographical sketch, called
The Grief Suite. They were performed in Atlanta.
Robert exposed his feelings
of his status in the form of a diary. A friend of his read
the diary as his mother on stage and then three men performed
this dance about dying of AIDS. It was a gut-wrenching experience.
We were very proud of Robert.
We really respected his right to bare his soul in doing these
performances. It showed us how Robert was progressing and
developing in terms of his whole psychological outlook and
his thoughts.
As the disease progressed,
he became very ill. Anytime he went in the hospital, we were
there. As he developed more and more complications, we tried
to help out as best we could while still leaving him his independence.
It got harder, but he actually was pretty independent up until
the end. It was difficult for him to walk and difficult for
him to drive. But he was still getting around and it was only
the last month that he couldn’t do that for himself.
I cannot tell you the amount
of hours we spent at the hospital. I think the thing that
kept me afloat was our support of each other.
Ultimately, I think that
what kept us going was our association with Test Positive
Aware Network as an agency and being able to talk to people
there—getting their advice about things. I was at TPAN
and was running FASN, the Family AIDS Support Network.
I started FASN primarily
for parents and partners and caregivers because I felt that
that was the one area that really wasn’t covered. I went
back to school to study the process of self-help and group
support. We’ve been running our support groups since
1989. We affiliated with TPAN in 1990. Not only has it helped
my mental health, but it helps people to cope and to live
through this whole process of HIV disease.
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Sometimes I think my husband
Marshall is the unsung hero in all of this. I remember Marshall
massaging Robert’s feet in the hospital. That was such
a powerful, tactile way for Marshall to show Robert his support.
I know Robert was touched by it. Then when Robert had chemo
and he lost his hair, both Marshall and Robert’s life
partner Michael shaved their heads in support.
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When Robert had been in the
hospital maybe eight, ten times, he developed his first tumor
in the lung—lymphoma. He went through the whole series
of chemotherapy’s ups and downs with all the side effects.
Then the tumor disappeared, which was like a miracle. In his
euphoria, he planned this gigantic trip with Michael. He wanted
to go cross-country on a train in Canada and then fly to San
Francisco and meet people and say goodbye to all his friends.
He knew this was the end of his life and that was one of the
things he wanted to do.
Before he even had a chance,
he woke up—well, he didn’t even wake up, he started
coughing one night and all that came up was blood. Michael
had to rush him to the hospital. The doctor told them that
the tumors had come back; that it was impossible for him to
go anywhere. The trip he had planned was impossible. This
was really the end of his life and he knew it. Instead of
going out on a glorious high note, this was it.
He did not want to end up
in the hospital dying; he wanted to be home. He hated the
hospital at that point. He just didn’t want to be alone
in a rigid, confined place where you had to wait on everybody
else to do things for you. Going home was the best for him.
He decided to go into hospice at home.
He had to go into the hospital,
obviously, and get well enough to go home. He did a lot of
crying with his doctor, with us, with Michael. It was one
of the hardest times of our lives. We wanted to see him do
everything he could do in terms of his independence. But looking
back, I’m sort of glad that trip never happened. Robert
always had his very dramatic way of thinking and that was
really the way he wanted to end his life.
The idea of having hospice
care at home was just wonderful. I felt that it made all of
our lives so much easier, and it really helped Robert immensely.
It was a beautiful time after
he finally resigned himself to not going on that trip. He
called his friends and said, “You need to come and say
goodbye to me.” He called about six special friends,
and he called his brother, Jonathan, and his sister, Julie.
It was impossible for his sister Ruth to even think of coming
from Israel. He made it a time of great peace and celebration.
We brought him special foods
and had almost a party atmosphere. Julie went out and bought
hundreds of dollars worth of flowers. Robert was planning
to give up, and it was very special because we really talked.
He designated a very dear friend he’d known since high
school to write his eulogy and she spent a lot of time with
him, talking, planning and writing. Up until then, he was
not ready to talk about things, and now he was ready to talk.
Robert died on November 1,
1992. That seemed to be his choice. November 1st had a great
cachet for him; it is the Mexican Day of the Dead. People
celebrate their loved ones who have died and go to graves
and put flowers and food because they believe the spirits
will come back and will eat the food and enjoy the flowers.
I think he wanted death to be part of that kind of tradition.
We as his support people—his close friends and his family—were
there surrounding him. I think that it was very peaceful—very
serene and very unscary, having that control and having it
the way he wanted it—that part was so beautiful. It wasn’t
easy kissing him goodbye, but it was the way he wanted it.
I think it helped us through the whole process.
He had a traditional Jewish
funeral. Six months after Robert died, we had a memorial get-together
in our country home for all the people who loved Robert. It
was also absolutely wonderful.
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It was a way of us celebrating
Robert’s life. It was six months from his death, so we
could talk about the fun things and his personality. We showed
eight hours of his dance tapes, everybody brought photos.
We planted a spirit tree in our garden. To this day, his friends
who were there have such a close relationship with Marshall
and me and Jonathan and Julie. We feel like part of the same
family.
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I think the one thing
I’ve learned about HIV and AIDS is you’ve got to
cope; you’ve got to find out what’s happening; and
you’ve got to get information. You have to start dealing
with it immediately. The real hard part is that HIV and AIDS
change constantly and a new condition comes up and you’ve
got to learn all over again.
I also think that it gives
you a long-term philosophy of life. You really need to change
your whole attitude about life. Marshall and I learned to
appreciate all the small things in our lives, not to have
such a negative outlook but to just look at all the positive
things in our lives. This is very, very important—make
those positive things important. The sun is shining; it’s
important.
I’m still busy being
involved with the Family AIDS Support Network. I feel they
help me greatly in terms of my mourning and my grief. You
have a special relationship with people living with HIV. I
want to do this as long as I possibly can. It helps me immensely,
but I think I also make a difference in people’s lives.
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Betty Stern and her husband
Marshall made their home on the south side of Chicago where
they ran a retail store and raised four children. Robert was
their third born child and first son.
Betty’s story is based
on an interview conducted in March of 1996.
After she lost Robert to
AIDS-related causes, she didn’t have to stay in the fight,
but she did. She founded the self-help Family AIDS Support
Network (FASN) here in Chicago to help relatives cope with
the HIV status of their loved ones. Soon afterwards FASN became
a part of Test Positive Aware Network, where it still maintains
a separate phone line, (773) 989–9490.
“Grief Suite”
is a chapter from a yet-to-be-published book produced by FASN
that tells their stories.
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