Timothée Bârrus/ For Nan

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and when it rains we still shiver together in sickness/ you could not call either one of us a better homes and gardens homemaker/ mint tea and blindness/ i have this ratty old chair i like but it smells of mildew/ so how could bones turn into dust before we died/ slim as broomsticks thrown through the back door window’s glass/ acquired knowledge and to unteach/ the lucidity of gin/ there never was a lawn/

or whispering/

at the core of the thing we have the individual/ you; solo, the secret in the knots of blood/ small wonder, eyes with hallows where the wars go in/ culture wars to dress the dead, the body is a wretch/

only in an instant/

the guts of what i do is a fascination with ambiguities and inconsistencies/ i watch people going about their journeys alone; alone is all we really have; i wonder about the lives people lead, wonder how they experience the world around them and how they make meaning of it/ coming to know the stories of those human beings/ narratives of isolation, of questioning and searching, of desire, and of confusion/ private moments of expectation, each photograph a location where people can play out a silent moment alone/ this moment/ right before something changes, the holding in of a breath and waiting, the preparing of oneself for what is to come/ everything is a self-portrait/ documenting a process wherein I try on the transitional moments of others’ lives in order to better understand my own/

AEN and the HIV Link to Colo-Rectal Cancer

This is not new territory. Not to us. Not to me. It would only be somewhat bewildering to you. It would not be your world. It would not be what you know.

What is it that I seek. This.

I do not often write posts that do not contain graphics of one kind or another.

But I am doing that here. Why.

Because I want you to listen.

Aen is a 17-year-old Show Me Your Life student with HIV and colorectal cancer. He has recently had colostomy surgery where he wears a plastic bag under his clothing where human waste is excreted as large portions of his intestines will be removed. Aen is clinically depressed, and has been emotionally unable to participate in creating video content. However, we are getting still photography from Aen that does what the masters of photography do best.

They stop the world.

Aen has stopped time itself in terms of looking at who he is.

How do we remember who we are.

Perhaps the question is more apt in asking: how do we remember who we were.

The relationship between photography and memory is an uneasy one; leaves me uneasy as well. I like to fool myself by saying I do not look back.

I do not want to give that process any more power than it already has. I am in denial.

Do not even attempt going there with me. Some denial is about surviving.

There is no pressure on Aen to produce anything whatsoever. We talk daily. He may never make video and that is fine. He takes us into his universe not so much with pictures of his body (he may never be able to do that and I am reminded of Diane Arbus’ photos of the disfigured and disabled), but with photos that speak to a unique and powerful symbolism.

There is one photograph of a colostomy bag filled with shit and taped with first aide tape to a toilet.

I have not decided what to do with that one yet.

There is another photograph pretty much the same as the colostomy bag taped to the toilet only this time there are two colostomy bags and they are side by side and one is filled with pills.

ART is speaking to this boy.

In the medical literature, there is hardly anything ubiquitous that explores HIV and colorectal cancer. It is a dark area swollen with hurtful shadows.

I am writing this not only for you, Mister and Mizz Audience (whoever you are) but I am writing this, too, to Aen.

I am thinking poetry.

Words and associations that you could make that would go to the tearing of us apart.

I want to hear this pain. I want to read your words.

Let us try that juxtaposed with the extraordinary photos you have been making. You CAN handle it.

If you kill yourself, my life will be less of a life than the one I would live if you continued to stay with us. I have much to learn from you.

You are thinking about how ugly you are and that you smell.

I hear you.

I see these photographs. Let us work together.

I will show you my scars. I do not think I have ever met ANYONE without scars. We have them, Aen, because we have healed over somehow. Often, not completely. Completely is the equivalent of death.

We know almost nothing about the relationship of this kind of cancer to HIV.

But, Aen. You are not alone. There are others. We will find them in those shadows. Together.

You have asked me to be your spirit guide.

So, go ahead, and take my hand. At 17, I was a lot like you.

I pulled the following clinical stuff from some medical website (I do not remember which one because it’s ephemeral) that was attempting to link studies that have been done.

Data on colorectal cancer (CRC) in HIV-positive patients are limited. The objective of this study was to investigate the incidence, presentation, and outcome of CRC in HIV patients.

MATERIALS AND METHODS:

Clinical data on patients diagnosed with CRC and concurrent HIV/AIDS infection between 1994 and 2003 were retrieved from the institutional records. Each identified patient was randomly matched with two HIV-negative CRC patients based on age, sex, race, and TNM stage at cancer diagnosis. Presentation, treatment toxicities, recurrence, and overall survival rates were assessed. Data were further compared with those of the published international Surveillance Epidemiology and End Results (SEER) data.

RESULTS:

Out of 3,951 CRC patients, 12 HIV CRC patients (0.3%) were identified. Median age at cancer diagnosis was 41 years (29-52), revealing a 3:1 ratio between patients younger and older then 50 years, compared to a 1:33 ratio in the general population. Compared to 57% in the general population, 90% of the patients had advanced stages (III-IV) at diagnosis. The median follow-up time for both cases and controls was 30 months (6-65). HIV-positive patients had a shorter disease-free survival than the controls. No difference in overall survival was demonstrated, however survival was significantly reduced in the HIV-positive patients when only patients who were initially disease-free were compared. Adjuvant therapy was well-tolerated in all patients without chemotherapy-related deaths.

CONCLUSION:

HIV-positive CRC patients tend to have an early and more aggressive presentation with less favorable outcome. Further epidemiology studies to refute or accept our observations may suggest a reduced threshold for screening for CRC in HIV-positive patients.

But nothing about anyone your age.

We will have some exploring to do. In order for us to follow that path, you must be alive to do it. I would suggest you might reach lives no one knows anything about. It will be a lot of work. You will become exhausted. But you will not be so horribly alone. — t



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