I'm still writing, clarifying the last post, "On Hold". I did call the HIV/AIDS suicide/crisis hotline (AIDS/HIV Nightline) last night (since my therapist and psychiatrist are obviously "on holiday") and the man I spoke with was not as helpful as the other two were when I've called before - except to say that nothing I think, or do, is going to change what has medically already happened or not transmission-wise.
And he also said that whatever other feelings I have about it don't mean that I can't still cherish the memory, too.
That doesn't mean I'm not cutting my hair short. There is no place open today (and my hair is not clean enough right now to go to someone) and I don't know if I have anything sharp enough, and I'm too tired to get out of bed.
I know I'm not the only one who feels cut off and I wish I could make my blog rounds wishing well for another year.
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 am not even going to attempt to completely read through your last 2 posts. I never went out tonight and I ended up getting on a roll and wrote over 20 pages in my book.
Then I turned around and ended up working on my blog, trying to release my mind so I could get a good rest. I ended up starting and finishing an article. Check it out if you want it might even make you smile or laugh. It's the one with Shrek Poo in the Title.
It's good seeing that you've revealed yourself to the world. I hope it wasn't just because I was pressuring you to softly. I still haven't come up with a nickname to call you. I know you are the +caretaker but that's a label not a name. I will ask if you approve of it when it comes to mind.
The picture you chose for your about me: your smiling in it. Thats always a good thing. I did notice a couple posts back that you were bent on cutting your hair shorter. Go for it. It will look wonderful on you and it is easier to care for. If I was closer I would offer to cut it for you. My hair was twice your length only 4 years ago before I decided I needed a change. And children with cancer were in need of hair to keep them warm for the winter. And if you follow fashion, guessing, shorter bobs are back and you'll fit right in.
I am off to make a sandwich, take my antivirals then shower and fall into bed. I noticed the title to your post but I know you will be fine so I will read it when I get up. I understand why your concerned, I lost my wife and we were being safe. But, I did infect her. I will share you should have known better though but you can't change the past move forward.... I will write you later today.
Peace Out - Aero
btw: Hope you didn't mind but I linked to your blog and Merelyme's. I saw you both had already linked to mine. That's cool... I like getting double teamed by to hot chicks. lol
Night ... I'll tell you good morning here Merelyme, since you'll be stopping in soon enough. I'm to tired to stop over at your blog. Staring at all my monitors for the past 10 hours is killing my eyes.... If this is garbled it's cause I can't see..
i do hope you are okay....
Aero,
That's great you're writing a book, I didn't know that. And that you wrote over 20 paages it in one night.
The reason I chose the picture I chose is that it's the only one I altered enough to like that doesnt's show my braid. And because my cat shields me. And because I wish I were smiling. And I want life to be about happiness. That doesn't mean It's insincere, but I'm not smiling now.
It is true that shorter hair is easier to care for, and that caring for anything that seems should be simple is a problem when depressed.
nothing about cuting my hair woud make me fit in though. That's great that when you cut your hair you gave it to children who needed it.
I can't reveal my name. I was just trying to convey the significance of the initials to make it a little more meaningful, or personal to you. I'm sorry.
I am so sorry that you lost your wife, and I don't know anything about the circumstances of that transmission. But it is impossible for me to be peaceful with even you telling me I should have known better. I have spent the whole of my working life in AIDS education, speaking in schools, writing, media work, being in boards, testifying, and I have been "good" - mostly by being alone, as long as I have known, and to lecture me that I should have known better when I am writhing in guilt and fear, is mean.
Being human, all the comexity involved and being with the person I would out of all the people in the world I would have most wanted to have a child by, - as stupid an impossibility that would be too, his initiating it taking me completely off guard. None of those things are excuses but they are realities I was minimizing in all my life of prevention preaching. Would that it were as simple as it sounds. you try to forgive yourself for knowing better and being human at the same time, and you move forward when you can.
It's not cool with me at all to joke about being double teamed by two hot chicks. We're both discriminating about who we link to and linked to you out of respect.
having troubles with my blog right now...just wanted to let you know.
Merelyme,
Both my therapist and psychiatrist at AiDS
Health Project who spend their lives working in prevention and the results of failure, expressed concern ( mostly that my getting pregnant is something to be avoided because of the medications I need). Neither of them lectured me. I wasn't sure what to expect response-wise, but I did not expect to be lectured to by a 23+ survivor, even if his track record is better than mine. I may have been naiive about a lot of things but lecturing down to people is not the way I ever worked in prevention.
Thanks for hoping I'm OK. I don't regret being honest in my writing.
I wrote you a Happy New Year comment as I was falling to sleep and when I woke up, it was still on the screen as if I hadn't hit send, so I don't know if you got it. But I'm wishing you a good new year.
I know that when you are depressed you feel isolated and nothing anyone can say or do will change it. I just hope it goes away soon so that you can feel the fact that we are here for you and care.
Your hair is yours to cut or not. You are beautiful any way you wear your hair.
Whimsy,
Thank you.
Aero,
I'm sorry, and I know it's not about "track records." It's about lives, and your wife (and my boyfriend I got infected by) lost theirs.
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