Heroism: A Community Responds (1987)

San Francisco America's favorite city for a vacation a convention a new lease on life the city that knows how faced with one of the highest concentrations of the most deadly and controversial diseases in the history of modern man San Francisco is learning how to care hi I'm Cory McCormick and I'd like to introduce to you just a few of the many generous volunteers and support organizations that have answered the challenge to address the needs of a community in crisis [Music] long considered a model community in health care for people with AIDS it is the attention to details of living that make San Francisco's efforts truly unique for people fighting a life-threatening illness the basic tasks that the healthy take for granted like preparing a meal can become overwhelming Ruth Brinker speaks for open hand our function is to provide two meals a day to people with AIDS and severe arcs the people that we serve are people that are so debilitated that they very often have to give us keys to their Apartments because they haven't the energy to get up and answer their doors we try to provide very good nutrition um they are given a bag lunch and the sandwich in the bag lunch is always made of tasahara bread and everyone in San Francisco knows how good that is yes and two pieces of fresh fruit a salad and a dessert and the dinner entree is packaged in an aluminum foil container so that if it does need to be reheated um it can be done very easily and very quickly and that consists of five or 6 ounces of some kind of protein um one or two fresh vegetables lightly cooked so they haven't lost their vitamin content and uh and then a carbohydrate potatoes or rice or PT and we never use processed potatoes all of the food we use is natural food we don't use processed anything I think I've mobilized all the caring people in San Francisco virtually I have a tremendous volunteer Force um we have um a full-time cook in the kitchen now we do this s days a week so many people out there that um that have made it very clear to me that this is a very necessary um a very desperately needed a program um people have told me that before we started the program they would have to prop themselves up by the stove to try to open a can of soup and warm it um they would have to make a choice between whether they should open the window or go to the refrigerator and see if there was any food there they didn't have the energy to do both and there have been times when we've delivered meals and people have crawled to the buzzer they didn't have the strength to stand up you know to um crawl to the buzzer to admit the person and so people like that simply can't be deserted you know whereas nutrition and sustenance are element for the ill less obvious but perhaps no less essential is access to the information regarding the latest developments and research treatment and Alternatives one of the objectives of project inform is to assist people with AIDS in locating the information they need in a body of print that is no less than mountainous and much more confusing one of project informs coordinators Joe Brewer the project has as its principal Focus uh dissemination of information to people who are interested in having it our principal value is the belief in the right to information on treatments among those who are affected by the illness involved we have an we operate an a hotline with 800 numbers around California and the United States over which we give out basic information however anything uh anything in depth is done through the mails people request it and we mail it out typically these days we are handling around 70 to 90 a day and mailing out 40 to 50 packets of information the information includes in uh things on how to think about treatment treatment strategy how to get to Mexico and and procure the drugs and uh all all while honoring the the rules of customs and um in the United States as well as specific information on the drugs uh that we handle to be the drugs that we deal with meet three criteria one is they are available you can get hold of them either by crossing the border in Mexico through your doctor or some other way in the United States number two they are chemical Medical Treatments uh holistic approaches and um uh and and other other types of treatments are being well handled by other people so we're limiting our efforts in this direction uh the third is that there be some some safety data real good safety data so that we know that the drugs can be used in certain ways carefully with safety and then we look for efficacy data so we want to see some efficacy data safety data they' got to there it's in the realm of chemical and medical and they are available to people at that people getting information from us get uh get just that information how to get it and how to use it uh what it's for and how to think about the combinations of treatment which everyone which is the consensus as to what's necessary for treating AIDS when I say when I say a combination of treatments I mean this um the the magic bullet hypothesis or approach is no longer seriously considered by anyone now uh whereas there may be um disagreement as to the how early on treatment should be should be begun as to whether you should be treated if your HIV positive or just what the point a point on which everyone does agree is that there will need to be an antiviral approach to the disease as well as uh an immune stimulating approach in other words you're going to need one chemical to to curtail the virus slow it down or kill it and you're going to need another chemical to stimulate the immune system into producing enough tea cells to keep you aw to keep you well in the future this information interestingly has become of uh considerable interest to Physicians around the country uh and in San Francisco uh we're getting an increasing number of of calls from doctors and medical centers wanting to know which drugs are uh are good for what how to use them uh they're looking to us for dosage information as well as procurement there's never been a flagging of interest on any of our parts however in terms of the importance of what we're doing this is uh uh perhaps not unusual in working in this epidemic in almost any capacity but we continue to be amazed by the fact that whereas we thought that surely by now the right kind of research and a coordinated research plan would be in effect we find that a year and a half after we opened our doors uh it's still not going on key key treatments treatments being used by hundreds or thousands of people are in some cases still not being researched even in the most basic of ways there's still no group in Washington uh with the FDA with NIH with uh with NCI even that is coordinating treatment research plenty of basic research plenty of epidemiological research plenty of research into how it's affecting heterosexuals and drug users next to nothing in fact nothing government sponsored in terms of how to save the lives of the people who are infected at this point we just found out in San Francisco recently that probably that between 70 that upwards of 70% of um of those infected with the virus will become actively symptomatic with Arc or Aids infections after 7even years of exposure that particular researcher Paul Ali has said in private that he would not release the data on the eth year because he felt it would simply be too frightening to people you see the formula has changed before it looked reasonable to stay put see if you develop symptoms and then treat yourself now the thinking has to be different now the thinking has to run like this if I get AIDS and sck treatments then it's almost certainly too late how far back from there do I have to start treatments for it to not be too late more and more is appearing that early treatment the earliest you can get yourself into treatment the better are your chances for not succumbing to this illness there are other more elusive needs that a person with AIDS encounters how to communicate the fear and anger the frustration and futility that often follow a diagnosis how to record hopes and dreams how to leave a mark stay productive and self-motivated by coordinating art classes for people with AIDS Joseph Durant tries to channel energy in creative and positive ways the classes began after I took care of U my friend Tony who died um about two years ago just before Thanksgiving and he pretty much withered away in front of the TV set and I really wanted to see an end to that kind of thing happening with people with a um I kind of saw I see art as a way of empowering people and giving them a chance to be creative and whatever context that could mean um in this case it's what I do is with Visual Arts um so I conduct classes for people with AIDS specifically involving art in uh a lot of what we deal with is the figure um there are a lot of a lot lot of aspects of the figure that are very interesting can be very applicable to a person's life people with AIDS have a lot of issues around body image and boundaries and uh the confusion that comes along with the disease can sometimes really contribute to that greatly so um working with the figure makes a lot of sense in a lot of different ways this is a project I brought to artist for community life um based on my experience with people I've known with AIDS and wanting to do something that would allow me to do my art abilities and my training in art directly with people with AIDS in the community um again to empower them and give them a sense of purpose and I think that the accomplishments one gets in art can transfer over into creative thinking into other areas of one's existence um artist for community life is basically a social organization within San Francisco that's come together around the AIDS crisis and we have done a couple of art shows that have been very successful around AIDS and wellbeing part of the motivation for doing the classes has been to give people a chance to quit thinking about their disease and um I make a real effort not to treat them like sick people because they don't see see them that way they're my students and I'm learning from them probably as much as they're learning from me if not more and we do talk a lot and we keep each other in check about about our various roles I see this as a chance not to be involved in therapy because these people are so bombarded with physical therapies and mental therapies and this therapy and that therapy it's a chance for them not to not to be involved in any of that to simply take the afternoon to draw or paint and relax the people we have spoken to thus far represent organizations that have been created specifically to address the needs of people with AIDS begun in 1974 to assist the ill their friends and families cope emotionally and practically with life-threatening diagnoses The Shanti project predates the AIDS epidemic in direct response to the growing Community need Shanti focused their efforts for people with AIDS and and now provides many services for the ill and their loved ones services such as those enumerated by Ty Foley we we are there to maintain a quality of life that most people are already accustomed to and we do that in five different programs um the first program being emotional support which provides onetoone counseling to people with AIDS as well as their friends families loved ones significant others we have a practical Support Program which provides Home Care like cleaning laundry doing errands things like that and we also have a residence program which gives housing to people with AIDS the two other programs that we have are the um information referral unit which is pretty much known internationally as a AIDS Resource Center and we have the paid professional counselors at the San Francisco General Hospital who are there for the patients it may be their first time in the hospital and they're also there for like visitors such as their parents that may be the first time that their parents know that they're gay I think ideally we would need chany projects if our culture if our world dealt with death and dying more directly as part of the living process but unfortunately we don't live in that type of world therefore organizations like Shanti have have really shot up across the United States and around the world about a week after I got diagnosed I turned toward Shanti um not really knowing what I wanted or what Shanti could give me but somehow feeling there would support out there I could uh reach out for and um I went to my first emotional support group for people with AIDS about 10 days after I got diagnosed and my heart was beating and went with another friend of mine who also had AIDS and we both said right away we only go here one time because you know we check it out and then that will be it um as usually when I go into the situation iy was the first one who got asked to talk so my heart almost stopped at that point and I've not stopped talking since then actually um the meeting went very good I got a lot of support just the feeling to be in a room with about 10 12 people who have AIDS and uh pretty much in the same situation was pretty amazing for me and gave me a lot of strengths to sit in a room full of anywhere from 60 to 70 people who don't have AIDS who are willing to put their time and their energy out there to help someone one who's you know someone who's in need and someone who's suffering really uplifted me tremendously it seems kind of selfish to say that I probably get maybe more out of it for myself than what I give to other people um the people that I'm C my clients uh the people that I work with uh give me an awful lot they uh not only do they become my friends but they become a very important part of my life The Shanti projects concerned with well-being and support are echoed on the physical plane by Irene Smith a familiar face on the AIDS Ward at San Francisco General Hospital Irene touches people with AIDS not only with her hands but also with her heart touch brings a balance uh into the day because it brings pleasure and good feelings which helps to relieve pain massage also so brings back awareness to the physical boundaries which is of great service in moments of confusion or disorientation because it gives a person an actual physical point from which to center it also stimulates the flow of blood and lymph our two main systems for filtering toxins from the body and helping to eliminate toxins from the body massage can help to reduce a lot of symptoms in our daily lives headaches backaches leg cramps insomnia nausea dizziness are only a few there are also multiple psychosocial benefits of massage because touch is love and it it's care and it's an actual connection of life from one to another so it helps to ease feelings of fear and isolation as a touch person we can model to friends and lovers and family that it's okay to touch one another and that it's okay to stay connected and to stay close to the patient which is very important sometimes you find a very close network of friends but there's a level of fear about actually being connected to someone that looks frail or ill if you will and massage also helps to instill a more positive body image which may be lost due to debilitation I want to stress that all of the the healing modalities that we're hearing about today are not just for people with age they're for everyone and by everyone taking advantage of the information about our bodies and the information about healing that is coming out is the way that we're going to establish a new healthy creative loving way in which to live and relate to one another which I feel is the way that we're going to put an end to lifestyle diseases so I want to stress for people not to wait until you get sick to think about healing healing is prevention and I want to stress that it's not just me and it's not just Rey there are 11 massage Volunteers in the Bay area hospitals working through the AIDS emergency fund and like I said there's 28 for hospice and there's a whole network of massage people all over the city involved in reaching out and sharing the communication of touch with people with AIDS and others with a concern as all-encompassing as the AIDS epidemic has become every effort to feed inform guide and touch people with AIDS is appreciated and deeply felt there remains however an essential element of day-to-day living to be provided for people with AIDS Against All Odds and contrary to the Daily barrage of increasingly dire predictions the AIDS healing Alliance recognizes the need for Hope essentially what the AIDS healing Alliance is committed to do is to dispel the myth that aids has to be fatal at this point there's very little being promoted anywhere that says anything different and we feel it's essential until people can believe that they can live with an AIDS diagnosis that they can live and not die then they'll continue to die just as people who got a cancer diagnosis 10 years ago died as surely as anything and aren't today as much so we feel that's the truth about AIDS the AIDS healing Alliance and the metaphysical Alliance teach us that the body is more than just a physical thing and this is very important because traditional medicine pays attention to the physical body and tries to heal the physical body and forgets the dynamic of the mind and the spirit which are very important to Body Balance and healing when one meditates and visualizes it's possible to relax the body to strengthen the body to stimulate the IM immune system to stimulate the glandular system towards healing so in the healing process it's very important to pay attention to the spiritual attitudes affirmations of love to rid the body of fear and anger imagery visualization meditation are all effective ways to do this we so we do public forums which uh in which we try to offer examples of people who are taking power in their lives and and taking some control of their health and their uh their physical care we're also starting to do small discussion groups on nutrition and enhancing the immune system on body work and its relation to emotional health and on visualization and meditation we'd like to do small discussion groups on a variety of topics and as we get the the people who can facilitate them we will our idea is to provide opportunities for people to get together and talk about their concern concerns about these things that are new to them uh in a to to share with each other to uh to bring it down to earth and out of the books and out of the you know the the big formal speaking situations uh to begin with I don't think you have to die with AIDS I uh can only tell you my story at my house the telephone rings and I answer it and sometimes it's someone from Seattle sometimes New York sometimes all over the United States and they heard that I haven't died yet I think that it's up to each individual you can't expect the doctor to do it it's a it's a job it takes minute to minute hour to hour you have to put your entire energy into curing yourself and helping yourself and not do anything that's going to negate this that's my primary message I just don't think we have to die with AIDS I was diagnosed in February of 1982 with KS capy saroma and began chemotherapy in March of 1982 I also felt that I wanted to do an alternative therapy and I began acupuncture in March of 82 and I continued doing acupuncture every two weeks for a year and a half and by doing this I felt that I had some control uh over my illness that I I made a decision of my own about what kind of therapy I wanted to do the doctors uh had chemotherapy at that time uh which was recommended the VIN blasting chemotherapy which was low in toxicity and uh I agreed to do that and I did that for four months in 1982 after two months of the chemotherapy my cancer stabilized and uh I began Alpha interferon treatments in August of 82 and have continued with those up to the present time every 3 weeks I go to the hospital and I pick up my um interferon and I give myself injections at home before bed at night 5 days in a row every third week I have also uh liked using vitamin C I feel that that's been helpful and the first couple of years after my diagnosis I did about 12 grams a day of time release vitamin C um but um that was and a multiple vitamin um and then uh also got into visualization about that time in along with the um acupuncture among the most important things were vitamin C I also did Mega vitamins and still do Mega vitamins of of all the vitamins that are necessary uh followed a good vegetarian diet uh I now eat fish I um did everything possible that was anti-cancer knowing that KS is part of this disease they practice relaxation techniques meditation visualization they took charge of their lives and they changed their lives and it was that process that mere decision to change that began their healing uh the negative headlines all the obituaries uh can um contribute to a feeling of um of of failure and and depression and uh so one has to keep reminding oneself that you are unique as an individual and uh you can find within yourself the uh reservoir of Hope and U um each one has to find his own um uh strength and what works for him diversity a characteristic long associated with San Francisco a characteristic emblematic of the volunteers and people with AIDS we've spoken to this evening and the hundreds of other volunteers of these and other organizations which time has made it impossible for us to introduce or even enumerate what's important for us to recognize is the refusal common in all of these hardworking understanding people to be passive about a crisis in their Community the Random House dictionary defines hero as a person in the opinion of others has aoic qualities or has performed an heroic act and is seen as a model or ideal and while making a sandwich doing the laundry teaching touching hoping and sharing may not seem heroic in the opinions of others they are all of them Heroes [Music]