“Though lovers be lost, love shall not; And death shall have no dominion.”
with the winter holidays in full swing and the end of near nigh, i am confronted with the reality of having lost inspiration with an effort that has been going for about 5 years now. i got to provide energy which became instrumental in forming a peer-led organization that meant to address stigma for people living with hiv- head on. i started a newsletter that has been published quarterly for all those years- being placed in clinics around the state showing newly diagnosed individuals that living with hiv was not only possible but both practical and profitable- ergo one can live a much more enjoyable and well-rounded life with good health and steady income-additionally one can learn about living with hiv by working with others who are struggling.
somewhere along the way, i became disenchanted with the federal and state systems that are funded to provide services for hiv positive individuals. other than the 1st issue of this newsletter, there has only been 1 offer of financial assistance to this publication-(although a link to our site is provided on their website) and this was never followed up on, nor were we given the courtesy of a phone call to explain why. the city receives over 6M annually to serve persons living with HIV and not only did a peer publication never receive funding, getting any information to use for publication was like pulling impacted teeth. However, there is plenty of energy to squabble internally amongst the city hiv office and the planning council to hold up the funds for 2013 by cancelling all monthly scheduled public meetings and involving federal representations to help settle internal disputes- with all of this disagreement and discord being about personalities and not policies.
so not only do persons living under the poverty level have no visible and emotionally present representation, those living on the fringe and the outskirts of metropolitan areas continue to not receive copies of our newsletters because the city and the state don’t deem it important while annually thousands of dollars are spent educating new case managers and providers most of whom are on a turnstile with their careers and hiv is simply a stop. can you feel my frustration here that those who will be living with hiv for the rest of their journey here are passed up to throw education and support to those who are just passing through (and already earn a paycheck)? GRRRRRRR
i find myself tired of this incongruity. i am well aware of hypocrisy and i am certain i have my own. but the audacity of the hiv office’s disregard for the spirit of its general mission has turned into a toad.
beyond this is our organization. with the onset of successful treatment modalities and the transition towards the american care act, most of the underprivileged people with hiv will qualify for medicaid and not need the array of special services. our mission to normalize living with a health condition becomes prime for transition as well. since i have been working in substance abuse field for almost a decade now, i find that hiv is no longer the issue it was in our community. yes way too many gay men (and others) are being diagnosed. but this is not the problem as i see it. hiv diagnoses are just a symptom of the problem- mental health and substance abuse. but this is not something we as a community (or culture) are ready to begin discussing with compassion and objectivity.
this is my frustration at the end of 2013 and one of the flags i will be waving in the years to come. i am more interested in beginning conversations about self-care, mental health, and shame-based trauma. yes safe sex conversations are appropriate, but healthy boundaries and saying “no” to one’s self hold more intrigue for me now. in looking up quotes to place under my 70’s roller skating photo for this post, i realize that although i am no longer impassioned by the last 5 years, i am certainly grateful for them. i don’t know if i will leave our hiv organization, but i have to find different involvement and feel strongly that its mission needs to modify drastically in order to even strive to be relevant.
if i am honest, part of my passion comes through creating change and developing processes. it sounds so geeky, (prolly is), but that’s the truth. i have been able to be involved in creating change in my community, albeit small, and that has been a complete blessing. and i hope for more blessings in my life and in yours.
i wanted some old school today- this is an unknown mix with a couple of crash-y edits, but i do like the 70’s vibe.