One of my cousins who lives in Boston area is in town with her husband whose mother lives here. I see them here once a year and in Tennessee for family occasions. She wants to get together at 4:30 for lunch/dinner. I'm scared. I'm feeling better but I don't feel ready to be around someone, or even up to bathing for that matter. And I will be tempted to have a glass of wine if I go. One glass of wine should not hurt, and I've often gone through long periods of not keeping alcohol in my apartment, or having it here (as long as it's not wine) and not drinking it, or only drinking at dinner with other people. But I don't know how I am now, so I probably shouldn't. It's the first time I've been tempted though. Valium affects the same brain receptor and doesn't compromise immune function the way alcohol very much does, and I'm allowed up to four low-dose Valiums a day if they're spaced at least an hour apart, but I don't want to take them unless I'm really freaking.
It will probably be a good thing. To get out. To be with good family. Since this will be my only family for me (other than my cat) this Christmas/New Years. I'm really scared. The only things for the year I have to talk about are my work-trips to New Orleans (which are too intense and too much to start), my Southwest trip with my "friend" from Belgium (which is too painful right now for reason I'll disclose soon) work for my cat-sitter's publisher (which didn't happen yesterday), and my upcoming magazine article which I feel very vulnerable, although hopeful, about.
The magazine article is something I want to talk about here, because it feels so out of my hands at this point although the editor, in New York, is working with me very respectfully and conscientiously. I want to post here my own, cropped and altered photos from the raw photo shoot, since I have no choices about what photo (full page) they will choose to use or how, or how sensitive to it being relevant to the article they will be. I don't want to be a good "face of AIDS" with faded print. I want the photo to make you want to read what I have to say, even though I never would have said what I have to say there without it having originally being said behind the veil of this nameless, mostly faceless, blog. I don't know how I feel about my face being posted here, even if it is on my own terms.
I'm scared.
Essays, Stories, Photos, Comments by Someone Living With "Mental Illness," HIV, Good Care, and Homesickness (These are not the only things I write about.)
ABOUT WHO I AM:
+PHc
San Francisco
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.
San Francisco
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.
My Medical History
I'm working on it, but some of the events of my history - at least some of the events of my HIV history - are listed in this 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.
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
- (Other characters explained in text, or by context: FAMILY members - all faraway, FRIEND in DC, PSYCHIATRIST and THERAPIST at AIDS Health Project, DOCTOR at Ward 86 San Francisco General Hospital, NEIGHBORS, and LANDLORD)
- Ghost of DALI (unexplained)
Archive
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2007
(79)
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December
(35)
- Nightline
- On Hold
- Exposed by Me
- Go To Bed
- Going Out
- Uneasy Relief
- The Waiting
- Attempt
- Missing
- The Day After Christmas
- Christmas
- Christmas Eve Day
- To Everyone for Christmas Eve (except for Sophia)
- Full Moon Alone
- Reflections
- Sophia and the Full Moon
- Circuity, the Solstice
- Mossicles
- The Alley
- Bullet-Proof Glass Medicine For Christmas
- Frustration Mixed and Fed a Little
- Exposure
- Past Bed Time
- Thank You
- Not In a Million Years, continued
- Not In a Million Years
- The Mix
- Dream Lost
- Clinical Observation: Emergency Home Visit
- World AIDS Day(s) Memorial: The Quilt Over Time
- One Day Late
- World AIDS Day(s) Observation: The Women's Clinic ...
- World AIDS Day(s) Observation: The Women's Clinic ...
- World AIDS Day(s) Observation: The Women's Clinic ...
- World AIDS Day(s) Observation: The Women's Clinic...
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December
(35)
Past Posts I Hope You Read
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SOME PRESENT LIFE, PSYCH AND PHYSICAL SITUATIONS:
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
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BLOGROLLS, FORUMS, AND SITES:
HIV/AIDS Blogs
Inclusive HIV Community Site
HIV & Mental Health Forums
Mental Health Blogs
Other Health Challenge and Wellbeing Blogs
Writing & Photography Blogs
Blogs from New Orleans
Friend Blogger and Blogger Friends
Random Blog & Site Mix
QUOTES AND POEMS THAT MATTER TO ME:
"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
- 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
- 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
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
le
af
fa
ll
s)
l
one
liness
- ee cummings
FAVORITE EPITAPH (from a cemetery in England when I was 14):
ENOUGH
ENOUGH
May you live with ease of heart. May you be happy. May you be healthy. May you be peaceful. May you not be lonely.
8 comments:
I hope you're feeling well enough to enjoy dinner with your cousin and that alcohol isn't an issue, or that you can talk about it. ... Do you want to be anonymous in your blog, or do you want to post your photos there?
I don't want to be able to be keyword-searched by an old neighbor, and I am ambivalent about wanting to be able to be keyword-searched by an old therapist. It's my name-search that matters. People can find my name relatively easily from information I've revealed here, but it doesn't work the other way around. If my name isn't on here anywhere, this site and all that's on it can't be looked up by someone looking specifically for me without a lot of effort, as far as I know. And the site isn't high-listed on the search engines.
I want to experiment with enhancing the photos to look as young as possible, and as old as possible.
oh hey...wow...a magazine article! this is good! i can understand how this can be scary. i treasure my privacy too. i write too and am out there...about to be published and...i can't even look at what i wrote yet because...it is my life. exposed. is this how it feels for you?
only post here what you feel safe showing. of course i would love to see your photo but...i am just being selfish. maybe you could just post it for a short time?
please tell us how it goes with family. it is so hard to get out and be with others and make conversation when you are feeling as you do.
i feel like i am commenting here too much or something...i just have grown to really care about you. i want you to be okay.
you do have the option of making your blog private to only people you want to see it. and...you can set it up so that the googlebots do not search for you. that is the one downer of blogger is that privacy is hard. there are other sites which offer more levels of privacy. xanga is one.
i hope your evening goes well. i am thinking of you.
HI, I am sitting looking at the Ganga flow by feeling how hard it is for you now.Things eep changing whether we want them to or not...we have no option but to allow them what is their true nature and try to melt the harshness of the moment by taking care of ourselves the best we can
Love
I hope getting out did you some good.
The day I start looking at you as the "face of AIDS" is the day you start to look at me as the face of burn victims or mental illness.
We are much more than just our hardships.
Thank you and bless you, Whimsy.
Merelyme, Yes I've done articles in the past (way past) and not had difficulty at all working with editors on essays, but short stories about MY life - I had trouble with editors, so this time I was a little demanding from the start (they sought me out! and tracked me down, and I have to sign the contract saying that I will follow through with it, but they said it won't go to print until I'm comfortable with it no matter how much tweaking that might involve. I was amazed.
What are you about to publish, a book, article...? I don't know if "Merelyme" is your real name.
Yes I wanted to ask you about your pictures, which are beautiful and make me happy, and seem self-loving in a way that makes me feel softer toward myself. - But does it make you feel vulnerable? Do you get responses you don't want? And how do you keep pictures on the sidebar from being strangely distorted? And what is it about showing them is helpful to you?
No, you are not commenting too much. I need you. How's that for direct. And I love seeing you show up (usually before me, the same places I check in with.) (Bty, I have another site to highly recommend, but I don't know if it is too much. It is from a man with advanced ALS called Brainhell - brainhell.blogspot.com.
I'll stick with blogger for now - and I do like being accessible so far.
Thank you.
KD, will you please ebb and flow your true identity here as "KD" (or Krishna Das) but KD would be good for here. Just put it under nickname and hit the dot.
And thank you,and things are a little better. I didn't know what you were referring too exactly. I love seeing the Indian flag on m now-completely secret statmeter locator, but there aren't an more from Amsterdam - which is what I wanted but makes me sad too.
Thank you for checking in and commenting. It feels like you're floating around out there, not so far away.
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