priorities

for the last 3 years, i have been graced with the opportunity to volunteer for the denver mayor's office of hiv resources planning council (mohr) with the last 2 acting as a co-chair. the purpose of the council is to guide with respect to which categories of service to fund for coming year.

we have entered into the prime season for our work. as the leadership of that body, we are now organizing the data to present, collecting community opinion and feedback, and preparing to present all this to the council at large (about 30 people) at an all day retreat we call "priorities".

in this process, i have learned so very much about the needs of persons living with hiv well beyond the scope of my own experience. i have also been made aware of the costs of doing business as a provider, and seen the magic that happens when people's hearts and minds become passionate about the work they do and the people they serve.

please don't be misled. additionally, i have seen how becoming too directed in one's service can easily turn good intentions into what could be labeled misdirection and manipulation in search of obtaining the almighty dollar. although i like to have faith in people as much as possible, i am not completely naive. but this is the exception and not the rule, and i refuse to become bitter because a snake or two can be found in the garden.

the council is comprised of about 1/3 treatment providers, 1/3 plwh, and 1/3 interested citizens at large. the real intention is to keep a "checks and balances" in place for the dissemination of the ryan white funds for the city. this is part of the federal legislation and is required in every major funding area of the country.

the effects of hiv and the communities involved have shifted over the years. medications have taken the infection of the virus from being almost certainly fatal to completely manageable in most cases. but the specific communities that are largely affected have become more in number and the poverty factor continues to become increasingly influential. this causes successful treatment to become more challenging and much less of a "slam dunk".
this is one concrete reason that priorities remains vital. from the outside, treatment would seem such a non-issue. "why don't we just give them medicine and be done with it"? one might ask... but upon closer inspection, one sees that if a person has no home, or a concrete substance use issue, or a mental health issue, or cannot pay their bills, then the likelihood of treatment adherence, which is vital for successful application, is doubtful. quite the opposite, starting a person on medication in this lifestyle environment creates further issues down the road as they can become resistant to meds.

thought and discussion is required in the dissemination of treatment dollars. all of the components mentioned are necessary in successful application. and listening to those who aren't always at the table is mandated for a holistic approach.

it's draining emotionally. it can be distracting to our regular schedules, but it improves and saves lives without fanfare on an annual basis. i welcome priorities.

today's sound choice is michael jackson with "they don't really care about us"

i get up again

i have had quite the week with clients. high needs, high touch, lotsa time. i sat in the emergency room with someone for a couple of hours, because they were not able to believe they were going to be allright any other way.

it's funny, because i have had no reservations about walking this person through their fear as best i can. i am reassured that i am doing service work, am fulfilling the verbal contract that i would become a journeyman in recovery and work with others. this translates to poz persons in my case and it's a pretty damn good fit.

i forget to be in gratitude. i guess i spent so many years in misery and discontent, that i float back there automatically as if the my foundation were slanted that way.

i gave a very small presentation at the planning council with the other leadership members. it seemed to go well, although one never really knows. thank goodness i don't get reviewed. we have dramatically modified the 3 year comprehensive plan and we are in the process of rolling it out to the council at large. fun times. no really. exciting times. hopefully more meaningful.

today's sound choice is chumbawumba's "tubthumping" (lyrics definitely tongue in cheek)

easy like a sunday morning

There are many many crazy things
That will keep me loving you
And with your permission
May I list a few

colorado is finally putting up a website for resources for persons living with hiv. it has been a long time coming. the pic above is just a peek. the actual launch is tomorrow evening. the planning council will be meeting with the mayor and other city officials for the launch of the new HIV website resource for colorado. this is the 1st of 3 phases. sidenote: tomorrow will be the 3rd time i will be in the presence of the mayor in the last week, too.

i guess the importance here in my mind, is the actual fact that we are making an effort to step into the 21st century with some forethought. there are many coloradans both in suburban and rural areas who may gain some needed insight without having to come into a metro location. and then there is that damn isolation and aloneness that hiv can bring. maybe this will address that somehow.

i am including the link for the pilot site here. the actual site will come online tomorrow and i will change the link. i love this one because of the color scheme and because of the plus sign that frames out those human faces like an odd window. it almost compels me to want to look further.

i am working the 3rd holiday party for the weekend. it is a brunch. and i think it is new orleans food, but i cannot remember. last night's dinner was spectacular. boeuf bourgignon, potatoes au gratin, and green beans with almonds and truffle oil. mayor hickenlooper was there, as were some folk singers from california who ended up performing a very homey rendition of "you can't take that away from me".

today's sound choice is vintage ella and louis doing "you can't take that away from me". there are so many versions of this song. diana kralls is very good. there's even one that has a little rodgers and astaire with their lost art of ballroom dancing .

me no pop i

i absolutely loved the cartoon character popeye. he was such a galoof. he was basically a puny guy who joined the navy to make something of himself. he was gentle hearted and wouldn't hurt a fly intentionally. but he often found himself in the middle of some intrigue and shade, and needed to call upon his strength (which he found in a can of spinach) in order to set things right again. many many times, this would revolve around the his ideal or his innocence which came in the form of the highly captivating and very awkward olive oyl.

i have been co-chairing a committee which decides the categories that receive ryan white funding. this priorities process has been going on for over a decade, but i am now realizing that it is very often a dance rather than a thoughtful and vital activity. there has definitely been a shift in the urgency of services, and it has been said that ryan white grantees have become their own welfare system in a bubble.

i gather that the main reasons for the separate funding stream of ryan white are twofold. firstly, when the ryan white care act was created, the humiliation that many inflicted with the virus was at a high level, including outright rejection and isolation. and the sheer magnitude of very rapid deaths in proportion to infections was overwhelming. the second reason is that the majority of affected individuals were very pro-active in exercising their civil rights and protesting the prejudices of the system and the ineffectiveness of existing policies. here i refer to such creations as actup, the redribbon campaign, the aids quilt, and world aids day. because of the very loud and brave voices of citizens demanding their rights, many policies of the medical community, the shift in stigma of disease in general, the streamlining process of experimental drugs have all shifted to respond in their wake.

i have really come to realize all this information as a result of sitting on this committee. but it is necessary to help shift the direction of the funds and shift the process. the parameters have really changed. the urgency is not the same at all. the microcosm of ryan white care is no doubt shifting. i am not sure which direction it needs to move. i am sure i believe i needs to decrease it's enabling of people to remain stuck. it needs to start empowering people to succeed, to get into health care, and to find ways to live independently with a renewed commitment to self-management. there needs to be a shift from people treating emergency funds like their paycheck. this needs to occur amidst compassion, understanding, and belief. and i believe the committee i co-chair needs to help navigate this whole enchilada.

i wonder where i can find a can of spinach to help me with all this.

today's sound choice is an old favorite of mine by coati mundi- me no pop i by kid creole and the coconuts circa 1981

the shape of my heart

The heart has its reasons that reason does not know. -Pascal.

the planning council that i serve on is planning to begin the process of a development of a 3 year comprehensive plan starting in march 09. there are overhauls and modifications to the entire hiv ryan white delivery system that will benefit from being addressed. our job as a council is to look forward and see what changes might be in order and benefit us and find ways to sail in those directions. the last comprehensive plan honestly looks as if it were cut and pasted from an earlier plan with no little or no meaning attached. more just a documment to get done in order to meet a deadline. that's not the shape of my heart.

the exec committee, which i also serve on, will be the first to take a look at the possibilities. the thing about foreseeing change is that it's easy to discuss but much trickier to try to implement that change. this will begin to determine the shape of our hearts. our mini-retreat is tomorrow and i am not sure how it will go, but i am ready to give it a go.

we have to become ready as a small group, a representation of a larger group, which is a sample of the larger under-the-poverty-level(ryan white) system of hiv services delivery, to look at things from a different light. we have to stretch our minds and our hearts and welcome new ideas.

i work within this healthcare system and i certainly see deficits. probably the most glaring is that the delivery system has become a provider/client makeup in lieu of the community model that founded it. i would like to see a return somewhat to that original somehow. i believe that poz persons can be more than just subjects. i would like to think that poz persons with some success in walking through their troubles can be invited to share their strength and those successes with other coming behind them and do so with grace and dignity.

something i know i am working on in my heart is the ability to transfer the unlimited caring and love for my work and the people i find there to the folks in my personal life. i sometimes give clients a lot more wiggle room and understanding than i do my friends and family. there is something a little twacked about this picture.

either way though, for me, this is a very long way from crouching in the corner of a bathhouse room, afraid to go forward in life, and trying hard to forget where i had been. or spending several years trying to be too tough to get sick and die and pretending that it doesn't hurt.

And if I told you that I loved you
You'd maybe think there's something wrong
I'm not a man of too many faces
The mask I wear is one
sting

trois gnossiennes

"Gnossienne" is the name given to several piano pieces by French composer Erik Satie in the late 19th century.

i am in a weird spot. strange and uncomfortable actually, because i feel my anger and my ego rising certainly, but also because i feel as if something ain't right. i serve as co-chair on the planning council for the mayor's office of hiv resources. we are currently underway to draw out our 3 year comprehensive plan. we have taken bids from contractors, but went with the samo samo after i was told because they were local and knew our modus operandi that it might facilitate fluidity. okay i can understand this.

we are setting upon an adventure with this process, there are several mini-retreats for all the committees. since i am on two committees it would mean two retreats. okay, the plwh committee i reschedule to fit several schedules. but the exec committee has been rescheduled without my input (mind you there are 6 persons on that committee). today when i spoke with the coordinator she informed me of the date and i was shocked. she replied that she had sent out the calendar the previous week. i did get a document on publisher which i don't have and cannot open. i have informed her of this before. today she replied that she didn't have time to worry about that now- that she was too busy.

i suggested that perhaps she could save the document as a pdf or some different file, but she couldn't worry about that now. well i think it's retribution for something that happened in the last exec meeting. she started crying when she was discussing another vendor and their apparent lack of effectiveness as well as their lack of respect for her. i was a little taken aback at the crying jag in the meeting as well as the inappropriateness of the inference about a vendor. as a council our job is to deal with percentage appropriation only and not individual vendor selection. and i think our job is to remain neutral.

Doorknob (from Alice In Wonderland)
Read the directions and directly you will be directed in the right direction.

so here i am, feeling unimportant and unnecessary. i am torn between two reactions (well i guess 3).
1) to resign from the council- small shit i know, but frankly all these meetings and retreats are scheduled during my work hours and i don't necessarily get paid for them- sometimes i don't get paid because of them. and i don't like being told that because i don't own a certain word processing program that i am not entitled to know what the schedules - i am a co-chair after all- which actually should make no difference- we are a council for plwh and need to accommodate them, not diminish them.
2) continue- swallow my singed pride and hang on to my seat, 'cuz it may be a bumpy ride. however, i could resign my chair position. i actually am currently working 3 jobs to make ends meet and it's maybe more than a bit crazy to try to include all this service work when i'm not really sure it's making any difference.
3)realize that i am wanting to make a decision because i am feeling emotional and do nothing to change right now, at least until the emotionality subsides.

i have to say that i am almost embarrassed that i am writing about something that seems to be so self serving, but it somehow has importance for me. i am not sure if it's the boundaries involved (or lack thereof) or another issue. i do know that i feel as if perhaps my talents and passion could be more wisely focused elsewhere. i am unclear if i have too many irons in the fire and need to downsize. certainly the "ships" discussed here already been launched. the musical notes of this composition are already being played. i guess i'll find faith that whatever happens is what is meant to happen. but first i check my motives and relax. be still and know.

interesting video posted today on gay wisdom

a drop in the bucket

the client advocates from "it takes a village" (photoshop courtesy of marc olmsted)

i was privileged to spend all day last friday at "priorities" which is a process to determine the size of percentages of ryan white funding that are distributed to treatment categories for persons with hiv. these funds are earmarked as the "payer of last resort" and the percentages are determined by the planning council (of which i am co-chair).

as we work a year into the future, and we had received a very high dollar amount this year, it was decided to base our figures on a 2007 amount for care, which meant to cut about a million dollars out of our budget. coupled with that,this year we had added a new medical clinic for undocumented persons which naturally took a sizable amount of cash to start and will also require dollars to operate.

it is a daunting task to discuss the wheres and whys of support services that are available to plwh/a. all categories seem relevant and necessary, but at the end of the day, our job is to stay within budget. we made decisions and none of us were really bent out of shape by the end of the day. this is an accomplishment, especially considering some of the stories i have heard about past priorities processes.

either way, with the extra million or without, it is merely a drop in the bucket of expenses that are really involved. the hospital and clinic bills are staggering and could easily eat up the entire allocation. the other services such as dental, emergency housing, transportation, substance abuse, mental health, could probably do the same. it's very challenging to try to allocate funds that are merely a glass of water thrown on a bonfire. but i was glad to have the opportunity to try.

i am playing around with a photo of a few colleagues with the idea of using the faces in a flyer for our services. that's betty boo (she is wearing betty boop earrings), donn r, and myself.

here is a remake of a 1978 hit that i used to really love. funny, but i happen to love this band, too- the silver sun pickups.