Essays, Stories, Photos, Comments by Someone Living With "Mental Illness," HIV, Good Care, and Homesickness (These are not the only things I write about.)
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.)
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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):
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