/ Mar-Apr 2006 / The Olivia Dukakis
GARY BARG: As someone whose
father experienced excruciating bone pain while living with multiple
myeloma, I am really grateful for your work with bone pain
awareness. I think itís hard for family members to truly understand
that level of pain. Thankfully, now people living with bone pain can
show their loved ones bonepain.com and tell them, ďLook, this is
what I am talking about.Ē
OLYMPIA DUKAKIS: Right. You donít have to live
with it. You can reach out and find other solutions. Maybe there is
some pain, but there are also solutions. I donít know what kind of
solutions my friend Jessica was exploring; I assume that she and
her family did the best they could with what was available at the
GB: What is also nice about the
campaign is that now you, as a friend, can actually provide them
with information and direction; it is something you can do to help.
OD: I think that today, without being too critical of the
hospitals, you really have to take your health into your own hands.
Get as much information as you can. People do make mistakes and are
overworked; there are a lot of things that can happen when you donít
have access. I think this is an opportunity to get access to
improve the quality of life.
GB: I always say that people
arenít only misinformed, but they are malinformed about clinical
trials; in other words, what they think they know is not only the
wrong information, but it is also worse than the truth.
OD: True. There is never too much information. There is
always some other piece of information somebody has that can help
you or your loved ones.
GB: We always say that the
caregiver should become a member of the loved oneís care team.
Caregivers must be able to provide information to other members of
the team and be heard and be respected for it.
OD: I always say that whenever a person gets sick they
need advocates because itís very hard when you are dealing with the
fear and the pain, and all the options and all the side effects. So
you really need one or even two advocates. My husband has been very
ill and I felt frequently that I had to be his advocate, challenging
this doctor and that medicine. I felt it was really important
because he was overcome and he was frightened. He had a brain
aneurism. The person who is ill often canít think. He or she canít
even figure out whatís the next thing to do for themselves. So
somebody has to be around, and I think that caregivers are the ones
who can do that. They are probably the ones that will have to make
GB: We call it becoming a
OD: Fearless is a good word for it. It does feel that
wayóthat you have to be fearless. And you canít worry about what
other people are going to think about you. I had one doctor say to
me, ďIím covering for another doctor but he does not have any
patients in the hospital right now.Ē I said, ďOh, really? My husband
is in the hospital and he is his patient.Ē Weíre sitting in the
hospital, and I am in the hallway trying to cope with the terrible
pain my husband is in, and this woman is repeatedly telling me that
his doctor doesnít have any patients in the hospital. After she
said, ďHe does not have any patientsĒ several times, I started to
yell at her. And she said, ďWhy are you yelling at me? Do you
realize you are yelling?Ē And I said to her ďDo you want to know why
I am yelling? Because I am frightened for my husband. Thatís why.
Iím frightened. Itís nothing personal. It has nothing to do with
you. Itís my feelings for my husband and the situation he is in.
Thatís why Iím yelling. Iím trying to get someone to see him in the
hospital.Ē She thinks she is going to stop me by telling me to get
back into control. Iím not shutting up because of that.
GB: And you shouldnít. You are a
OD: I am. I understand it. I learned thatís how you have
to be. I donít like pushing my weight around people. I donít like
being put in that position. But at a certain point, you feel like
you have to. Who else will take care of my husband, my children and
GB: Exactly. Thatís your role as
an advocate. I donít think that many people know that you might be
the only Academy Award winner who was also a physical therapist.
OD: Yes. I was. This was when
people were first dealing with polio.
GB: As a health care
professional, what advice would you like to share with family
OD: The hardest thing to do is
acknowledge the sickness and avoid denial. Focus on today rather
than on mortality. Figure out what you can do today and do it. You
do have a choice regarding where things are going. I think you have
to do that and plan.