zoriah_photojournalist_war_photographers_AIDS_asia_woman_death_dying_20041208_2073

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zoriah_photojournalist_war_photographers_AIDS_asia_woman_death_dying_20041208_2073

Image by Zoriah

Millions of people in Asia suffer from HIV/AIDS, and millions more lives are affected. Mother to child transmission of the disease, usually after the man contracts AIDS from a sex worker and then transmits it to his wife, has produced children infected with the disease numbering in the hundreds of thousands. Families are torn apart and lives are ruined, all by a disease that could be controlled to high degree with simple education as well as proper medicine and medical facilities. One of the primary reasons for families to be thrust into poverty in the developing world is when one member becomes ill, especially if it's the bread winner of the family and they are infected with illnesses like HIV/AIDS.

As a photojournalist it is always difficult to photograph subject matter that you are closely emotionally tied to, yet that emotional tie also allows you a passion for the work and a sense of purpose in documenting it. Photographing people dying from AIDSâ€"the same disease that I lost my father toâ€"has been a personal mission of mine, mainly because I hope to create awareness that may save others from the pain of living with the disease, dying from it or losing a loved one to it.

When you know what it is like for someone to suffer through AIDS in the Western world, watching people suffer through it in the absolute worst of conditions is beyond difficult. To see people sleeping on hospital floors, coated in flies with barely enough energy to open their eyes to look at you, it is hard to bring the camera up to your face and shoot. But this is my job; it is what I have chosen to do and I have done so because I believe in the power of the still image to effect change.

This story was photographed between 2004 and 2005 and re-edited in 2009.

2006




Image by Heather F

Photo courtesy of H. Hill.

Heather H. says: "I knitted [Pat] a red chemo cap, and in exchange, she promised to let me wear her fake boob on my head. What a great sense of humor."

Heather also shares the following letter she received in January 2006 from Pat regarding the hat, among other things. ("Toilet-Moose in the letter is a reference to the horrible unearthly moaning and gurgling sounds our commode made at Simucon 2002.")

How to tell you that I've been writing this letter since I got your wonderful gift?

Well, at any rate, I have, over and over in my head, wondering when I could put it to (virtual) paper, and I guess I've run out of time to ponder it. Except let me point out that I had to ask Heather A if you had really, REALLY called when I was in the hospital....{grin} I was kinda out of it.

Anyway! Let me start at the beginning. I found a lump -- oh, say five or six months ago. I'd had a cyst in that general area, so I wasn't really panicked, and in fact, I was able to shove all my misgivings into one little mental room and close the door for quite a bit. Finally Heather A and I made a pact regarding physician appointments. Lo and behold, the "cyst" couldn't be aspirated. That was on a Thursday. On Tuesday I was at the radiologist for what turned out to be two mammograms, an ultrasound, and an ultrasound-guided biopsy. They knew in their hearts before I walked out the door that day -- so did I, really -- but they confirmed it to me when I went back the next day for a recheck of the biopsy site.

Okay, so cry for 18 hours, near nonstop. Just stare at the solitaire game on the computer and cry, without thought, only with tears. Then I talked to my boss (who is wonderful) the next day, and she reminded me that people don't die from breast cancer. From all kinds of metastases, yes, from other illnesses, from old age, but not from breast cancer. That calmed me down to where I could actually think again. It wasn't a death sentence any more.

I had a car accident that weekend -- thank all gods for insurance! It was over 00 damage to my car and my ego, 'cause it was my fault.

I had a surgeon appt the next Tuesday afternoon. He confirmed that I needed surgery, outlined my options and time frames, etc. While I was there with him, my boss tried to call twice on my cell phone -- another good friend at work had just discovered a huge lump in HER breast! It feels like an epidemic, I'll tell ya! Anyway, I took the next weekend to ponder what I really wanted to do in the matter of how much tissue to take off, and then I used people I knew (pays to know people) to bump the surgery up before Christmas. My folks came up from Florida, bless 'em, and I had a total mastectomy on the left. It offends my sense of order to be so lopsided, even though I generally appreciate assymetry more than its evenhanded counterpart, and I remember trying to see under the covers and bandages right after surgery. I also remember later that night, falling asleep in midbite over my supper, over and over and over again. It would! have been laughable had anyone else seen it. {g} Once I woke with water in my mouth, mid-drink!

I was back to work part-time after a week, full-time the next week after that. The scar is hugely ugly, of course, and my sensibilities are still offended. However, I have plans down the road to have a big-ass tattoo on that side of my chest, and a couple of the MD folks have said they want part of the same tattoo on ankles or shoulders or whatever. Nice support group, huh?

I started chemo last week Thursday. I have four treatments, every other week, of Adriamycin and Cytoxan, cancer-killers of reknown. Renown? Hmmm. Then I start weekly treatments times four with Taxol, another cancer-killer, and Herception, a monoclonal antibody for people with the HER2 gene. (Don't ask 'less you really want to know! I've learned a lot.) The Herceptin will be weekly for an entire year, but at least its side-effects are few and far between. As for the other stuff, I was one of the fortunate folks who suffered little to no side-effects. No real nausea (though I admit I was forehanded with the anti-nausea pills), slept for two days, absolutely HATED coming down from the steroids for a day, and lost five pounds from lack of appetite. Now I'm 25% done with this phase! Yayay!

I'm in a study, too, on the effects of a couple of things on the stress of chemotherapy in early-stage breast cancer. (Mine's a Stage II -- large tumor, but no apparent lymph node involvement or metastases.) The arm of the study I'm in uses spiritual growth to battle stress and possibly even recurrence. They've already done this study for HIV/AIDS patients with surprisingly good results, they say. I figured I couldn't lose -- one arm was Tai Chi, one spirituality, and the control does nothing. See? My sofa loves me! I could have watched TV for ten weeks instead!

...and that brings me to your gift, which came before I started chemo. I have to take issue with the "Toilet-Moose" appellation -- what's my mailman supposed to think?!? But it made me laugh, I admit it freely! I chuckled the whole time I was opening the package. Finding the little labyrinth made me gasp, truly. It was such a ... such a wonderful surprise! Labyrinths are a spiritual experience for me, and it touched me very deeply that you would have remembered my interest in them. I had big ol' belly-shaking sobs, Heather. I hadn't cried much since the first shock of being diagnosed with breast cancer, but let me tell you, I made up for lost time that night. It has been a humbling thing from the start to realize how many people care and would help if I could only find ways for them to do so, and to accept it when I need it (which is probably more often than I will admit -- women are such independent cusses, and I'm ! a great example!). Your gift and your card brought me face to face with that in a way I had managed to avoid to that point. Did you know you sent huge hugs with it? I got 'em all.

Please don't feel bad about making me cry! It was cathartic, and I needed it. I still need it now and then. (...now being an operative word today, I reckon.) (It does not pay to run out of anti-depressives two days ago!) That little labyrinth went with me to chemotherapy, and when I was beside myself with anxiety and near tears with fright, I "walked" it with my fingers to calm myself, over and over and over, till I swear the grooves are deeper now. It'll go with me every time. Out of all the kindnesses I have received in the past few months, that is the one that is dearest to me. I cannot thank you enough.

I took Thursday (chemoday) and Friday off work to sleep, and I was back at the salt mine on Monday for most of the day, yesterday for most of the day, and today for it all. Chemo is next week again, and it's usually even better the second time. I expect to lose my hair right about that time, too. I have a wig ordered and will be scheduling the appointment to get my head shaved and the wig trimmed to suit me for next week. I'm not going to wait for this damn disease to dictate THAT little piece of my life, at any rate. I should be simply GAW-geous bald!

I laugh at every opportunity, and me being me, I find lots of them :) That's the way I prefer to face life, after all. I walked into the oncologist's office the first time for my chemo-planning, and I announced to her that I plan to die of old age -- she laughed. I have women treating me, except for the surgeon, and he actually delegates a lot to a female nurse-practitioner who is also a licensed psychologist and is wonderful. (I actually typed "remale" first -- is that a sex-changed guy with second thoughts?) I love women, I've decided more and more strongly. Men are all right in their place {g}, but women are sustaining creatures and see the need for sharing like many men don't. No, my sexual leanings aren't changing! Like I said, men are all right in their place...{hummmmm}

This would be a purrfect place to segue into my thoughts on relationships and friendships, but I really do need to go to work today sometime. {duck} Perhaps that will be another book in your emailbox one of these days? Just let me tell you one other thing. The laughs we have shared are truly one of the high points of my life. We had such innocent and rich FUN.

Okay. Let me go mop my face and find something to wear. I'm glad I finally have this written! Now I can laugh with you again, I think.

Peace and health to you and yours, lady! I want Emily updates one of these days, please! I love your Emily-tales.

Love,
~Pat ^..^

25/02/2009 (Day 3.56) - Definitions




Image by Kaptain Kobold

From the Ontario Human Rights Commission:

Transgender: People whose life experience includes existing in more than one gender. This may include people who identify as transsexual, and people who describe themselves as being on a gender spectrum or as living outside the gender categories of “man” or “woman.

Crossdresser: A person who, for emotional and psychological well-being, dresses in clothing usually associated with the “opposite” sex.

Labels and definitions are always difficult things; what works for one person may not always work for another. But from a personal point of view these defintions aren't bad. I certainly identify with that for 'Crossdresser', although I don't actually dress as often as my photostream might suggest, and can just about relate to being 'Transgender' as well, albeit that I regard myself as being at least 98% of the way to the 'Male' end of the 'gender spectrum'.

Anyway, today my 'emotional and psychological well-being' required some tranny time, so I allowed myself a shopping trip into Wollongong. And for FGR, but mostly for my own pleasure, I indulged in the glorious feeling of running barefoot on the beach in a flowing skirt.

View On White

Update: I should have said that the skirt came from 'Something For Doris', a vintage/esoteric clothing shop in Wollongong that I can't recommend highly enough.

A year ago today I did an Armstrong and Miller tribute.


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