Date: Wed, 30 Aug 1995 11:34:41 -0700 (PDT) From: Joe Mortz Subject: Living With HIV in Santa Barbara II LIVING WITH HIV Column, September'95 Commitment, duty.... Life on Life's terms..... (Here you can read in... anger, fear, loss, control, etc.) =09Yesterday was the anniversary of when Robert and I said to each other that we are our mates. (.... warm, joy) =09Today is the anniversary of Robert's death. (..... bad, terror,=20 release...) =09Tomorrow is the anniversary of when I last abused any mind=20 altering substance. (..... good, fear and freedom) =09Next week is my birthday. (.....good, happy) ( My birthday is=20 also Women's Suffrage Day so I can emotionally share it with those who=20 celebrate some of my country's peaceful and inclusionary growth-- which=20 pleases me.) (.... more good and happy) =09These changes weren't all in one year. These changes and the=20 accompanying feelings, joys and hurts processed over years. =20 =09But, the cycles of the calendar make these cherished events of my=20 life feel like insta-photoclip-dramas. It is all, in one, so real and so= =20 unreal. Such is life. =09Civilization and memory have a way of making life appear like=20 objects which are just things to mill through. Modern society with all=20 the so-called specializations, categorizations, itemizations and=20 standardizations can delete and belittle my life's wholeness and my=20 fulfillment. I have to work and work hard sometimes, to cherish and=20 enhance the value of my life. Such is life. =09But, because I do enhance and cherish memories; because I say=20 these are important; these dates aren't objects! I am me! I am not an=20 event or a thing. They are part of my =D2me=D3. I want and I expect respe= ct=20 for these events. And, for all the events (big & little, good and=20 not-good) from which I am me. =09If this is true for me it is also true for you. =09It is difficult sometimes to avoid turning my self into an=20 object. Sometimes in the material world I gladly behave like an object. = =20 I do the paper work for housing assistance in detail, trusting that soon= =20 this process will be personalized with COMmunications and desirable=20 results (that is a type of respect). Sometimes I am objectified without=20 my choice or respect. Then I protest or move to a more human, more honest= =20 and more effective environment. =09This column is a protest. I am too tired and stuck-in-the-mud to=20 move. =20 =09For preface....My nurse case manager has given me guidance which=20 has, at least, helped me to extend my life with quality. My MDs have=20 saved my life. Volunteers and professionals have helped to support my=20 sanity and security. That is part of their job. I am grateful they did=20 their job and for the support and respect. My cooperation and respect is=20 part of my job. These services have been provided in a cooperative=20 environment of mutuality--which is part of why the service has be en service. =09But, all too often I have been and seen human's turned to=20 objects. The "service" has not been service. =20 =09The county pharmacy failed to dispense my medications correctly. =20 When I objected to this objectification they blamed me. Not cute! The=20 pharmacy gave a written excuse to the Health Initiative which was=20 quantifiably wrong. Caught in that error, the County gave the State a=20 different excuse. That excuse was quantifiablly erroneous. Months=20 later a county beurocrat asked what do you want. DAHH! Why didn't you=20 ask from the start!! How about accurate, timely delivery of medicatio ns without lies? I am an extremist, I guess. (But, since, all the=20 County clients on Medi-Cal got written notices of how to protest to=20 Medi-Cal.) =20 =09The County "HIV" clinic is promoted as a primary (general=20 medicine) care clinic. The doctors, the referral agents and the printed=20 words make differing claims. Who is telling the truth here? In the=20 process of staying well, non-HIV conditions become life threats and=20 emergencies in the bureaucracies.=20 =09Once upon a time....I wrote to the HIV Consortium asking that=20 their funded sources do "consumer evaluations" in accordance with the=20 common industry standards and their enabling legislation. Something=20 standard like.... let the person speak for themselves, say what they=20 want, say what they think. Didn't happen. Forget it . =20 =09Once upon another a few times.... I suggested verbally and in=20 writing to AIDS CAP (AIDS Project Central Coast --APCC -- now) that they= =20 let the customer do evaluations and have access to suggestion boxes.=20 Forget it. What's so hard about self-expression by the consumer, on the=20 consumer's terms, when the consumer wants.. .being open to seeing the=20 unexpected, just in case not all is known.=20 =09Once upon a time.... I suggested that customer services and=20 provider job descriptions be written out and provided to each consumer. =20 A couple of years after saying it, I wrote it out. Never got an answer!=20 Come on, if you care you communicate. Then I volunteered and wrote an=20 APCC (AIDS CAP then) services directory which listed who got what=20 services and how within that agency. Was told it would be useful later, after the current set of changes. That was almost two=20 years ago. =09Once upon a later time .... I compiled a directory of HIV=20 services, which finally got printed through AIDS CAP with the agency's=20 verbal promise to assure annual, if not more frequent reprinting. I have= =20 since typed up a much improved version with peer & professional input. =20 The County can't afford to print it.... Oh Ya! The county first said it=20 had too many errors (every "error" was agency provided information and=20 all but one a county number provided by the county--literally). =20 A colleague at Being Alive in San Diego says agencies don't want=20 comprehensive directories 'cause then the providers lose control and the=20 customers can take their dollars somewhere else. DAAHH, I hadn't thought= =20 of that. But, I've found other providers when I'm dissatisfied, even=20 when I only have MediCal dollars. =09Once upon another time.... I was told "we'll take care of you". =20 Honest sentiment. Nice thought. But, AIDS is too complex for that to be=20 reality. Anywise, no offense meant, but I want to take care of me....I=20 want to be in charge of my life. I want and need help. There may be a=20 time when I have no physical and mental control. YUKS! But, it is less=20 likely to happen if I do the plan, and do it for both the worst as well=20 as the best . (Personal involvement helps enhancement of the patient's=20 comprehension & functional capacities). =09Once I was on a panel of four AIDS patients for a volunteer=20 training session. Three of us were addicts in recovery. A trainee=20 volunteer asked the staff person and the licensed counselor who were=20 coordinating this event, " do addicts get over their drug abuses". Oh=20 no, the professionals said. Bull Shit, we chimed! The "professionals" repeatedly corrected our statements. We didn't exist; our life=20 experiences weren't real. And, drug abusers are called "difficult"! =09With research projects being one of the country's major ways of=20 providing health services and professional education (not to mention pork= =20 barrel money), why is there only one on-going research program in Santa=20 Barbara?=20 =09Has the life of AIDS services in Santa Barbara gone full circle?=20 =09 More than a decade ago there was one lady leading a small army =20 out of her home to fight AIDS with Stephen....working with anyone who=20 would work. Then Mark, Jerry, Chuck, Seh, and others brought the=20 agencies and the government into the care struggle. Then Joanne, Chryle,=20 Andy, Monica, Casey and others brought quality of life services and=20 interagency cooperation. In this cherished growth, habits and turfs were formed. Interests and needs were identified. Now, I suspect=20 the mission and the turfs have been confused. =09Any wonder why many PWAs stay back, are difficult, complain or=20 sometimes SEEM to just use and take without giving? =20 =09I hope that this issue of the BULLETIN carries some recent=20 information about the Santa Barbara AIDS Quilt. It was made for love,=20 for memorial, for education and, of course, for publicity and=20 fundraising. It was used well. Problems arose. It was stuffed in a=20 trash bag. Then forgotten. Not good! But, real symbolic! (C) by Joe Mortz, permission to reprint given. Monthly Column for the=20 Santa Barbara BULLETIN. Joe Mortz (805-564 0824)