| Transcript |
16 Montrose Voice / Dec. 2,1983
AIDS and Grief: A Personal Experience
Feature
By Michael Helquist
Reprinted from "Coming Up," San
Francisco
"Michael, I think we need a miracle this
time."
"Mark, what if we got it? What if you
were out of the hospital and cured of
AIDS? We could go traveling. You know
where we would go?"
"Where?"
"First, I'd take you to the Greek islands
because I've always wanted to go there.
Then you could take me to your favorite
beach in Hawaii."
A little later.
"You know, Michael, you can still go to
those places. I don't know where I'm going
from here. But I just might be there waiting for you."
—May 1983
SAN FRANCISCO—It's been five months
now. Already Mark Feldman died of AIDS
complications on Thursday, June 2.1 have
a little time perspective on those six and a
half months from November of '82 (the
date of his diagnosis) to June of '83. It
seems like yesterday; it seems like never.
In six months' time, I came to care deeply
for Mark as a friend, a boyfriend and a
lover. And now he's gone.
Mark chose to play a very important role
in making public the personal side of an
AIDS diagnosis. He helped others see
beyond the medical reports and statistics.
There are, of course, more than AIDS diagnosis hitting the gay male population.
Some men also face death and dying.
Even greater numbers of gay men and lesbians confront troubling sensations of
loss and tremendous feelings of grief.
My experiences with Mark were personal and unique. They do not necessarily
apply to others. I do think that it's important to acknowledge the considerable pain
and grief in the community now. I believe
it's important to be sensitive and supportive of these feelings.
Sensations of shock combined with my
fear of grief to block much of the inevitable
grieving process. Early in August of this
year, two months after Mark's death,
things began to get out of my control.
I was asked to address a new group of
Shanti Project counselors about the grieving process. The day was difficult for me. I
had successfully held back much of the
pain of loss for weeks, but the pressure for
release was building. After I spoke to the
group, there was an exercise, a sort of
guided meditation, that Shanti employs
called "letting go of grief." Even the title
scared me. I didn't know if I could handle
the pain; it seemed like too much. I also
feared that if I let go of the grief, I would be
letting go of Mark. I went ahead with the
exercise: it allowed me to release just a
little bit of the pressure I felt. And I was
okay afterwards.
Soon after the Shanti training, I experienced a great deal of pain following a
medical procedure. It was the most intense
physical pain I had ever endured. These
physical problems coincided with my
growing sense of emotional pain and loss
for Mark. I was unable to hold in the feelings any longer. With my grief for Mark,
there also occurred the withdrawal of a
new friend's valued comfort and companionship. The thought of the second loss
triggered the immensity of the first. My
physical resources were at their lowest
ebb. The pain killers I was taking after my
operation altered my perspective, and I
got very depressed. I was in a sorry state.
On one of these difficult nights, I had
trouble sleeping. The pain kept me awake.
I got up to take another pain killer. I
returned to my bed, feeling lonely and sad
and hurt. I pulled up the blankets, rolled to
one side and thought of Mark. I imagined
him lying there in bed next to me. I
snuggled up closer to him and put my
arms around him. I remembered staying
overnight at his house several nights during the last months. We would hold each
other and feel safe for a few moments. I
remembered our through-the-night conversations, in between his violent coughing spells. We would tell sleep-tossed
stories, and I'd rub his back. And now,
during my difficult night, I felt safe and
secure with my thoughts of lying next to
him.
That evening provided me with a valuable insight. When I called upon the
memory of sleeping near Mark, I felt I was
calling upon his spirit and energy, on our
shared love and support—all those things
still available to me. I began to realize that
only when I let the grief out and feel it will
I begin to get to the other side, that of
enjoying my memories of Mark. I started
to tell friends that I wanted to let go of
Mark's death. His death was tragic and
heartrendering; it hurt me more than anything I had ever experienced. But his
death was an event that had passed. I
wanted to begin to cherish more fully his
life.
The actual grieving had begun many
months ago, even before Mark's death.
There had been losses along the way. In
May of 1983 after the Candlelight March,
Mark and I realized that we would not be
attending the Denver AIDS Forum
together in June. He would not be well
enough. Mark and I didn't have time to
take trips together. I enjoyed thestories he
and his friends would tell about past travels, but I realized that traveling would not
be part of my experience with Mark. We
would never visit, as planned, his friend's
iris beds or his favorite beach in Hawaii.
There was a loss of physical intimacy.
Sexual sharing had been curtailed many
months earlier. There were times in the
hospital when Mark and I were alone
together, and Mark would ask me to lie
next to him, just for him to be physically
close to someone. But there was also the
occasion when he suggested that we no
longer sleep together in his bed at home.
He thought he would be more comfortable
with more bed space. I felt a little loss.
Most directly I grieved while watching
his condition deteriorate. Some with AIDS
remain in stable condition; Mark wasn't
one of them. He didn't have an easy time
with any of his medical tests and treatments. They all seemed to be hard on him.
There are what I call my "horror stories"
about which I won't write. But the horror
occurred when I saw things that made me
feel intuitively that Mark wasn't going to
be able to get over this disease.
Reviewing my journal of last year, I
noted that on Christmas Eve after dinner
with good friends, I came home feeling
overwhelmed with sadness. Earlier that
day I had visited Mark before he departed
to visit his family in New York. A rash had
broken out all over his body. It was a reaction to the medication for Pneumocystis.
He seemed so vulnerable and upset. I
hadn't seen him so shaken before. My feelings of sadness and incredible anger
stayed with me throughout the day. When
I returned home late that evening, I sat
next to my Christmas tree lit up in the
dark and reached for the phone. I called
my Shanti counselor and told him, "I don't
know what to do with this grief." We
talked about it for awhile, and he was both
encouraging and supportive. I was
relieved that he was available for this and
other calls. But I still asked, "Where can I
put this grief? If Mark gets worse, there's
lots more to come." And that was only the
end of 1982.
I was with Mark when he died. So were
his mother, Ruth; his close friend, Stuart;
his Shanti counselor, Stephen; and his
doctor, Steve. We knew, but with complete
disbelief, that the end was near. Mark was
not talking; there was no eye contact. His
breathing was extremely labored. I knew I
was waiting for his last breath, and I
hated that thought. I had promised Mark
that I would stay with him throughout his
ordeal. I believe he waited until we had all
gathered around him. I think Mark had
prepared himself and was ready to let go
peacefully. But I wasn't ready; I hadn't
kept up with him.
Stephen suggested that I might want to
say good-bye to Mark. The thought was
devastating. At first I thought, "No, everything is resolved between us." But then I
wanted to—all confusion and rebellion
inside—and I stood up, leaned over the
bed; and, as I had so often before, kissed
him on the forehead, told him I loved him
and said good-bye. Soon thereafter, his
breathing stopped. Mark had let go. He
had fought enough, and his peace was
well-deserved.
Mark's funeral was held in New York on
Sunday, June 5. I had given Mark's
mother a framed copy of the only photo I
have of Mark and me, taken last March.
On the reverse side of the photo I had written to Mark some private thoughts which I
realized would never be seen again. The
photo, special items from special relatives
and friends, were buried with him, as was
the crown that a close friend had made for
him which Mark wore the night of the
Candlelight March.
On the day of the funeral, at the same
hour, I stayed home alone here in San
Francisco, wanting to be aware of Mark in
my thoughts and feelings. I lit a candle
and played some of his favorite music. I
re-read part of a fairy tale that I had read
to him a few days earlier in the middle of a
sleepless night. I cried for him, and I cried
for me, his family and his friends. I
remembered the special moments Mark
and I had together. Finally, I was still and
calm with just the flickering candle and
the music, and I felt some peace. The
ordeal of Mark's fight was over. I
imagined his being laid to rest, literally.
By the time of Mark's San Francisco
memorial service three days later, I felt
that I had already had my service for
Mark. This one was for the public, for the
larger family of Mark's friends. Congregation Sha'ar Zahav organized and offered a
moving and heeling service. I felt a desire
and a need then to be public myself.
As I had come to be associated with
Mark, I wanted people to realize that, of
course, we collectively move along. There
is continuity. I sensed the useful role of
widow/widower as a link between the past
and the present and as a step from the
present to the future. With the funeral and
memorial service completed, and later
with the closing of Mark's estate, there
occurred the more or less official ending to
the public grieving. For many, of course, it
was just the mid-point for much private
grieving.
Many of us have so little experience with
grieving and with the realities of death.
We're often separated by lack of understanding from our families. Those of us
who are younger have often allowed ourselves to be cut off from older gays and
lesbians who could perhaps share their
insight into these life experiences. We
don't seem to have any sub-cultural,
meaning gay, traditions for our grieving.
This was certainly true before anyone
heard of AIDS. Death has not been a
stranger to our gay population, but to
many it seems death has never been so
pervasive. It is this pervasive quality that
makes AIDS grief different. Who will we
mourn next? And there are so many of us
in our 20's and 30's who now mourn the
loss of friends, brothers and lovers—many
also of the same age.
One of my moresurprising feelings soon
after Mark's death was a flash of fury
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