Tuesday, January 29, 2008

Minutes - edited for clarity, with relevant addenda (i. e. first posted too soon, and not sure what I can say about other people anonymously)

I wrote in my post "Rainbow Wishes" about, after recovery from what was just a heavy-duty cold that had me very wobbly getting out of bed at all for three days, that I suddenly felt a burst of need to be involved in HIV health care planning processes again after a years-long, dark hiatus. Participation on the CARE Council had been an intimidating idea lingering vaguely on the edges of my personal planning for a long time. I should by now, but don't know enough about the council to know if is a good fit for my experiences/efforts/concerns but I know that being increasingly shut out of health care and well-being services (and now rest-rooms) over the years, that pertain to me, that those people most like me (long term survivors) are not excluded from, has affected my identity and self worth in a way that has made me become someone I don't want to be in many ways - including, angry, shut down, and reclusive. I am at a point where I am doing well enough and poorly enough (in my estimation) that it is time to throw my self back in the whatever-it-is.

My application to the CARE Council went well. The bio/resume construction that I had listed in the sidebar of this blog as a goal that I had put off - that I thought if I posted publicly here as a goal I might be more pressured to follow through with assembling (for another opportunity) - I followed through with for this, and submitted to both. (Creating a bio/resume doesn't sound like that big a deal, but I did work legitimately for many years in nontraditional ways, and I didn't keep records because when my physical health was precarious - albeit for many unplanned years, I wasn't thinking through those times in terms of surviving long enough to ever require records for anything. Everything was present tense even though that present tense continued. And now I've stalled for a long, long time in a way invisible to most, to be able to make a sense of past and future in order to build a life that feels on par with others (most people) who did not live through those years that way.

I hadn't predicted this post would be going this direction, or that I would be plugging anything here, but there is an agency in San Francisco that I have worked with off and on which helps people with HIV/AIDS who once had successful careers they lost and who have trouble now that (for many) their health is good, but they have huge gaps in their history they can't explain without disclosing more than they want or are leally required to do, and who don't know or can't, catch up to where they once were. The agency is called Positive Resource Center, and works with the depression (yes that word again) of starting over, loss of past identity, with training and retraining and updating training, life direction assessment, benefits counseling (in case of possibility of relapse), coordination with the Department of Rehabilitation and with employment agencies in which HIV disclosure (or employment history gap) is not an issue. Besides being extremely sexist/orientationist in language and programing (in my opinion), they are by far one of the best agencies AIDS Service Organizations in the city. My point is that I am not the only one stuck in a limbo of abilities and desire to be responsible (and of service), and stuck in a tar pit of aspects of living with the paradox of relative physical health and HIV disease. I am stuck more than some by not fitting demographic stereotypes programs designed to help are designed for - and I was so young when I got sick - when I was physically sick - that I didn't have work history to lose (- that I would claim).

The second opportunity I needed a resume/bio for, other than the Care Council I am going to remain private about for now.

My casual initial interview with the membership committee representative of the coucil went well. Seeing people (one not since 15 years ago) went smoothly, although he had memories of working together that I don't. (Like he remembers speaking to the 49's together. It seems like that would be something I would recall, but then halfway walking home - stupid to e doing at 9Pm - I had a very hazy memory of being mixed in with them on a field - half with red T-shirts so we made a big human red ribbon on the field).

Watching the CARE Coucil meeting I felt both intimidated and competently qualified if concentration/memory will be reliable. (I am having symptoms from the un-recommended nighttime Geodon cutback, but I, so far, am managing those symptoms by being able to remember that I don't have certain thoughts/impulses when I do take it.)

I am not sure where I belong, but came away from witnessing this first council meeting knowing it is time to be involved again somewhere - but that I might be able to have more impact on a smaller community advisory board of an agency I am a client of, if possible. (Maybe both if involvement turns out to be reviving.) I will go to some of the committee meetings, and the steering committee to get a feel for things.

(AND I actually came away from a call asking for a reference for this application from a person I very much look up to - with an invitation to lunch. She used to be the deputy Executive Director of the agency I would like to be - am burning to be - on the community advisory board of - if they still have one.)

I know I don't want to do fund-raising or direct prevention work anymore again ever. (Allocation of funds toward effective prevention efforts - yes - which is how the counsil works.)

Goal-wise, moving forward-wise, traditional education still matters to me very much.

One person I saw at the council meeting who I've crossed paths with over the years, divulged (personally at the break) some very similar problems to mine, (who is having to take Alzheimer's medication for long-term HIV cognitive degeneration - has to write everything down) - but is serving on this council, volunteering, and managing to take a couple classes, and says otherwise can't get out of bed at all. That that/this is all there is. I know I could not do all at once - but I was inspired to hear the degree of difficulties managed. We exchanged numbers for a coffee sometime.

I will have to be more private here when more public again. But want freedom of expression. I will try to find a way to find a balance. I would not like to resign this blog to invitation only. Accessibility matters. It makes my living matter.


+L said...

Oh congratulations! I hope it works out. You have so much to offer.

Even if it means going to invitation only. :)

laughingwolf said...

way to go hon! hope you are able to get back in the swing of things :)

susan said...

And I hope your blog stays public.

Piercing The Veil said...

good luck to you ... nice thoughts

Sarah said...

It's so good to hear about the steps you've taken, exploring where you may fit into the work of the Care Council. People I know who are considering going to seminary call this the discernment process--attempting to discern what they're called to do. Personally, my concentration and memory improve when depression lifts and involvement increases. I hope the same for you! Love.

Jim said...

Great news. In my experiences, when I am more involved using my mind doing something like working, my confidence improves. I am happy for you.

Hugs, Jim

Polar Bear said...

I understand certain things have to be private. But I hope you keep up with this blog because I like to read up on what you are up to. But you're right - sometimes it is about finding the balance.

+PHc said...

+L, I'm not sure what congratulations are about, but thank you very much for hoping it works out and that I have something useful to offer.

If this went to invitation only, you would be the first invited. I wish thee was a way people could "knock" on invitation only blogs - so if you don't know about them instead of it just saying , "Sorry" they could leave a site address and you could go visit them, check them out, and say "sure come on over." Maybe there is.

Susan, Thanks, I hope it stays public because I discover more by who shows up that I didn't know about. And I love logging for the open interaction.

Laughingwolf, Thank you for your encouragement.

Piercing the Veil, Thank you for showing up! You make my point.

Concentration improves when depression lifts when I can take the medications that help that to some degree when I can take the medicines that help organized thinking, that is when I am not disabled. But yes when I am not depressed and can think clearly, I am more involved, not the other way around as some say.

Jim, Thank you. My confidence improves when things that are not in my control are stable enough that I can do a good job at what I'm involved in. Just going doesn't do it. Thank you for being happy for me, although hopeful makes more sense to me. I hope you are having a good day. I'll come visit.

Thanks Polar Bear!

whimsicalnbrainpan said...


Keep your blog public. There are many people out there who have yet to find this gem.

+L said...

Congrats was for the successful interview! :)

Take care and thanks for the encouragement!

about jenji said...

Good job!

Keep on!


tati said...

I just wanted to let you know I'm reading. Not much to say, just that...

Greta Perry said...

Proud of you as always!

Dream Writer said...

This is so wonderful, I love to hear and read when people do so well.

Thinking about you ;)