Essays, Stories, Photos, Comments by Someone Living With "Mental Illness," HIV, Good Care, and Homesickness (These are not the only things I write about.)
Hey this is David, K.D.s friend. We all had lunch at Naan and Curry after the Dalai Lama talk, Remember? Sure would love to chat just not sure how to reach you, hopefully this is a start.
Hi! How did you find this? Through the link on KD's site? (The description needs to be changed on that.)
Thank you for saying hi. And for not using my name. My ability to be as open as I can be on this is dependent on nominal anonymity, even though I, evidently, can be easily found out.
I'm very reclusive these days except for being so communicative on this blog which has been cathartic and integrating for me. -And an interesting way to make connections with people nonbloggers probably wouldn't understand.
My pseudo-nonymous email address is sfpositive@gmail.com, (but I'm bad about checking it because it's not my "real" one. And I like communicating this way better. But you're welcome to contact me either way.
Love to hear from you, +PHc
Merelyme,
I'm glad you have a black kitty, too.
I'm a little fragmented, but the blog helps me understand how strangly my life goes together, and why it would be reasonable that I would feel fragmented, and the blog helps inegrate by being a kind of group email of care.
I'm confused about how to be able to stay anonymous enough talk about the relationships in my life (without names) which I need to do. Some relationships are integral to my health and are sometimes difficult, and I want to be able to thoroughly express them here, and I'm not sure how to do that. And I have to be this open about myself, dangers, or not, but I don't know "the rules" about protecting myself, and I don't know exactly what from? Any advise? I like talking here better than email and your advise might help someone else too.
I should be writing this in a post but: meds are better, and definitely relieving, although having to take them every time my phone beeps requires alot of patience.
And I followed through on my part of the project I was so stressed about that I'm not sure if I should write about. It's for the most part wrapped up. We'll see.
My signing my messages from "+Positive House" (my other site) was an accident. It should have said "+PHc" (which stands for +Positive House caretaker, although I have not been an attentive caretaker there the last two months. There's a lot of heart and creative rage in that site that only specific divisive demographics would really get - but never read. But I will go back to it in some way for the made-up support and validation and inclusive company I need that I built (based on what exists for others) myself that I'm not getting anywhere else, in order to move forward in trying to communicate and/or contribute to what matters to me. I contributed good HIV/AIDS work for a lot of years other people's ways, and I can't find a single person who feels the way I feel (in HIV/AIDS work and public health approaches in general.) Those feelings of passion, frustration, and complete ineffectuality are a compressed explosion that needs careful release when ready. But maybe it wasn't an accident I signed for that site. I don't know yet.
HI,Glad David made contact. he is going through a tremendous amount of hard stuff, sealing with mortality and the way so-called friends react to it. As far as your"friend" goes...I think he genuinely wants to have news of you and this has turned out to be the best way to get it. Here I am in India checking your blog to see how you are. I think of all the times I could't get you on the phone for days and days and didn't know if you were alive or dead or if there had been some emergency...So I understand. On the other hand I understand how it feels like an intrusion on your private space, and your ability to feel free to say whatever you want without needing to worry about how it will affect someone. If you want to change the description of your site, let me know what you want to say. Ja sends her love.She is very uch at home here and doing well. Love from Mother Ganga and Moi
I'm 41. I've had HIV since I was 18 (1986). I live in San Francisco for the particular medical care I believe my survival depends upon. I'm far from family, never married, no children. I'm doing the best I can with more difficulty from mental health challenges (and isolation), than with physical health problems - other than from the medications for both. I work regularly for a writer in exchange for help as I need it - like car rides and cat sitting). And am working toward being involved in more volunteer work like I was in the past.
I'mworking on it, but some of the events of my history - at least some of the events of my HIV history - are listed inthis entry.It's impossible to say whether my diagnosed mood disorder led to the risk behaviors that made me succeptable to HIV exposure so long ago - or whether the traumas leading to being diagnosed with, and living with AIDS present themselves in the diagnostic form of a mood disorder. Both problems (if they can be differentiated) are life threatening, and longterm, and I'm relieved to discover that writing freely here helps to alleviate the suffering of both, for me.
MY REASONS FOR WRITING:
My Reasons For Writing Here
The longer I survive, the more I don't recover from the idea(s) that I am, and am not, dying from AIDS. One expression of that contradiction is that I feel driven to share my life and tell my stories to the children and grandchildren I won't be having. So I'm telling them here - more openly than would be possible otherwise - in form I hope will find some kind of connection to life in time.
I hope, regardless of reciprocation, that giving my experiences here can be healing or helpful, or company to someone else - or, at least, be distracting in a good way for whatever reasons.
Comments
Comments are invited, please. Anonymity included. I want to respond to all of them either in the comments boxes or on liked sites, but I have trouble keeping up with everything I do; sometimes it takes me a day or two - so please check back. (I also try to improve past posts and photos for when I have not been thinking or articulating clearly, or have not yet been up to saying what I want to say on a present day, so check back that way, too if you want. The whole thing of it is changing slowly.)
.
CONTENT OF THIS BLOG:
Cast of Characters
KD - lives in New York; traveling uncategorizable musician and friend; boyfriend of five years six years ago at a very different point in my life; almost daily phone support; power of attorney
Unidentified, infrequent, longterm, Belgian "FRIEND"; He works as a relief coordinator for the International Red Cross; has a new flat in Antwerp but travels as much as not at times, sometimes to areas of natural disaster (Pakistan earthquake), mostly to high conflict zones (Sudan, Nepal, Isreal, Chad/Darfur, Kabul...). I see him for an intense week or two, every year or two. Most of the photos in Return From the Desert are his, as well as the San Francisco skyline I used for the header of this blog.
SOPHIA ("So" to KD) - my fifteen-year-old cat with kdney disease; requires a lot of medical care; extremely strong bond
My "CAT-SITTER" - lives in Santa Rosa, California; also uncategorizable very-long-time-ago-ex-romantic friend, and most-local emotional support; ex-journalist, writer, horticulturalist, Berkeley Extension Instructor, blogger; offers me some work for bartar
Goals and Wishes (listed here just to incite myself. You can skip this part.)
To finish my Bachelor's degree in anything - Update: disrupted again, for now - maybe a class
To be a summer counselor at Camp Sunburst for kids who have, or have lost an HIV+ family member, or who are HIV+ themselves
To find, or start a support group for longterm (20 year+) survivors of HIV - open to any kind, color, gender... of person who qualifies on the one basis of longterm survival - (Would love help or suggestions about that)
Tp participate in AIDS Health Project's open writing group next time it's open - (am on waiting list)
To access a copy of Takako Lloyd's 1996 TV Asahi documentary covering my friends and me living with AIDS then - Takako was living in Sydney, and working out of Tokyo. - (Would love surprise help with that; I'm afraid of asking)
HIV+ (2/08):
22 years
Blood Counts
(1/08) T-cells: 460; viral load:undetectable
(9/07) T-cells: 449; viral load: unknown
(6/07) T-cells: 364; viral load: undetectable
(7/97) T-cells: 0 (- which technically means: low enough that there is none in sample vial to detect - not none in your body. You can not live without T-cells.); viral load: through the roof, but undetectable only because technology did not yet exist to measure it.
My Current HIV and Psych Meds (in case the list makes anyone else feel better)
Norvir (antiretroviral)
Reyataz (antiretroviral)
Truvada (combo antiretroviral for Viread and Emtriva)
Gabapentin (anticonvulsant, also used for mood stabalization, and for neuropathy)
Geodon (antipsychotic, also used for mood stabilization)
Methylin (for concentration difficulties)
Wellbutrin (antidepressant)
Valium (as needed for panic or debilitating anxiety)
Ambien (sleep)
Sonata (in addition to Ambien, when Ambien is not enough to sleep)
Very good coffee and cheap wine in moderation - Update: no more wine allowed
"To look life in the face...always to look life in the face. To know it for what it is. To love it for what it is. And, then, to put it away."
-Virginia Woolf in The Hours
"It's not that the DNA in a virus wants to get itself copied. It is just that,of all ways in which DNA could be arranged, only the arrangements that spell out the instructions 'Spread me,' spread. The world becomes full of such programs....they're here because there here because there here."
- Richard Dawkins
Untitled Here
It's a strange courage you give me ancient star:
Shine alone in the sunrise toward which you lend no part.
- William Carlos Williams
I(A
I(a le af
fa ll s)
l one liness
- ee cummings
FAVORITE EPITAPH(from a cemetery in England when I was 14):
5 comments:
Hey this is David, K.D.s friend. We all had lunch at Naan and Curry after the Dalai Lama talk, Remember? Sure would love to chat just not sure how to reach you, hopefully this is a start.
oooh sweet kitty. i have a black kitty too. how are you doing my friend?
David,
Hi! How did you find this? Through the link on KD's site? (The description needs to be changed on that.)
Thank you for saying hi. And for not using my name. My ability to be as open as I can be on this is dependent on nominal anonymity, even though I, evidently, can be easily found out.
I'm very reclusive these days except for being so communicative on this blog which has been cathartic and integrating for me. -And an interesting way to make connections with people nonbloggers probably wouldn't understand.
My pseudo-nonymous email address is sfpositive@gmail.com, (but I'm bad about checking it because it's not my "real" one. And I like communicating this way better. But you're welcome to contact me either way.
Love to hear from you,
+PHc
Merelyme,
I'm glad you have a black kitty, too.
I'm a little fragmented, but the blog helps me understand how strangly my life goes together, and why it would be reasonable that I would feel fragmented, and the blog helps inegrate by being a kind of group email of care.
I'm confused about how to be able to stay anonymous enough talk about the relationships in my life (without names) which I need to do. Some relationships are integral to my health and are sometimes difficult, and I want to be able to thoroughly express them here, and I'm not sure how to do that. And I have to be this open about myself, dangers, or not, but I don't know "the rules" about protecting myself, and I don't know exactly what from? Any advise? I like talking here better than email and your advise might help someone else too.
I should be writing this in a post but: meds are better, and definitely relieving, although having to take them every time my phone beeps requires alot of patience.
And I followed through on my part of the project I was so stressed about that I'm not sure if I should write about. It's for the most part wrapped up. We'll see.
Thanks for asking. I'll come visit you now,
+PHc
By the way David and Merelyme,
My signing my messages from "+Positive House" (my other site) was an accident. It should have said "+PHc" (which stands for +Positive House caretaker, although I have not been an attentive caretaker there the last two months. There's a lot of heart and creative rage in that site that only specific divisive demographics would really get - but never read. But I will go back to it in some way for the made-up support and validation and inclusive company I need that I built (based on what exists for others) myself that I'm not getting anywhere else, in order to move forward in trying to communicate and/or contribute to what matters to me. I contributed good HIV/AIDS work for a lot of years other people's ways, and I can't find a single person who feels the way I feel (in HIV/AIDS work and public health approaches in general.) Those feelings of passion, frustration, and complete ineffectuality are a compressed explosion that needs careful release when ready. But maybe it wasn't an accident I signed for that site. I don't know yet.
+PHc
HI,Glad David made contact. he is going through a tremendous amount of hard stuff, sealing with mortality and the way so-called friends react to it.
As far as your"friend" goes...I think he genuinely wants to have news of you and this has turned out to be the best way to get it. Here I am in India checking your blog to see how you are. I think of all the times I could't get you on the phone for days and days and didn't know if you were alive or dead or if there had been some emergency...So I understand. On the other hand I understand how it feels like an intrusion on your private space, and your ability to feel free to say whatever you want without needing to worry about how it will affect someone.
If you want to change the description of your site, let me know what you want to say.
Ja sends her love.She is very uch at home here and doing well.
Love from Mother Ganga and Moi
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