Sistah’S Speak

By Khafre Kujichagulia Abif

Sistahs Speak is an anthology, a collection of nonfiction stories, poetry, creative nonfiction, personal narratives, and critical essays from women living with HIV/AIDS. This project seeks to create a space for women to share their stories in their own voice, with an open heart as a vehicle for chronicling the experiences of women living with HIV/AIDS. The goal of this project is to empower the reader, support the soul, and uplift the spirit of women living with HIV/AIDS and the collective communities each one represents.

• Language: English
• Publisher: AuthorHouse
• Release date: Aug 24, 2017
• ISBN: 9781546202684

Khafre Kujichagulia Abif

Khafre Kujichagulia Abif, MLS is an Atlanta-based AIDS & Bisexual activist, writer, editor, blogger and artist who has been thriving with HIV for 28 years. Khafre now serves as a Community Organizer with the Southern AIDS Coalition, a Birmingham, Alabama based resource and advocacy organization. Khafre has been honored as HIV Plus magazine one of 75 Most Amazing People Living with HIV in 2016 and by POZ magazine as one of The 2015 POZ 100: Celebrating Long-Term Survivors. Khafre was among the Bisexuals at The White House in October 2015 and 2016. Khafre is the editor of the anthology, Cornbread, Fish and Collard Greens: Prayers, Poems & Affirmations for People Living with HIV/AIDS, a 2013 publication from AuthorHouse. Khafre forth-coming works include, Raising Kazembe: A Memoir is an epistolary collection of Khafre’s journey as an HIV positive father to his son.

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© 2017 . All rights reserved.

Cover image by Lori Burns Ward

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

Published by AuthorHouse 08/24/2017

ISBN: 978-1-5462-0269-1 (sc)

ISBN: 978-1-5462-0267-7 (hc)

ISBN: 978-1-5462-0268-4 (e)

Library of Congress Control Number: 2017911983

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Contents

Dedication

The Denver Principles

Acknowledgments

Introduction

We Call Their Names

Well Woman Prayer (by Lepena Reid)

Gratitude -- In Spite Of (by Rae Lewis-Thornton)

Let the Haters Hate (by Teniecka Drake)

Mystical World (by Nancy Ramos)

Does HIV Still Bother Me, After 22 Years?

(by River Huston)

89 T Cells from An AIDS Diagnosis (by Maria T. Mejia)

89 células T de un diagnóstico de SIDA

(by Maria T. Mejia)

Stress and How It Affects (by Christina Carta)

Living with Memory Loss (by Lynda Arnold)

Going Back to Work (by Vickie Lynn)

I Only Wish Someone Would Have Told Me HIV Does Not Discriminate (by Rachel Anne)

A Call to Action … One Step at a Time (by Mel Painter)

How to Talk Trans: An Introduction

(by Devarah ‘Dee’ Borrego)

The Epidemic Among Black Women Requires More Than Rhetoric (by Vanessa Johnson and Waheedah Shabazz-El)

It Was 1993 (by Susan Mull)

Loving Yourself (by Monique Howell-Moree)

I The Highs and Lows of My HIV Journey – Part I (by Angela Krebs)

I AM an Empowered Wombman (by Stephanie J. Brown)

Un Grito de Ayuda en Fort Walton Beach

(by Arianna Lint)

A Cry of Help in Fort Walton Beach (by Arianna Lint)

A Thousand Speeches Inside a Positive Person

(by Sophie Jayawardere (Stigma Warrior))

Being Alive (by Sherri Beachfront Lewis)

So Very Thankful! (by Lynda Arnold)

A Letter from Waheedah’s Son (by Waheedah Shabazz-El)

In Memory of Cicely Bolden (by Michelle Anderson-Morrison)

My HIV Monologue (by Masonia Traylor)

The Problem with Pride and Shame (by Rae Lewis Thornton)

HIV Loved My Family (by Tranisha Arzah)

Where Do We Go from Here? (by Michelle Anderson-Morrison)

Why Even Share? (by Michelle Anderson-Morrison)

Curiosity: We Need to Stop Hiding and Speak Up

(by Brooke Davidoff)

Finding My Voice as a Woman Living with HIV

(by Naimah O’Neal)

The First Nine Months (by Darlene Robertson/Southern Belle)

We Are HIV (by Rachel Anne)

I Refuse to Allow HIV to Be an Excuse

(by Angelena Cortello)

My Reflection (by Michelle Anderson-Morrison)

My Passions (by Darlene Robertson/Southern Belle)

Once Upon a Dream (by Michelle Anderson-Morrison)

Stuck in the System (by Vickie Lynn)

Positive (by Carrie Elizabeth Foote)

Rainy Day Try to Get Me Down (by Nancy Asha Molock)

A Girl Like Me! (by Michelle Anderson-Morrison)

My Love Letter to HIV (by Vanessa Wade-Cheek)

February Resolutions (by Mel Painter)

Fighting for Prison Health Care Above the Norm

(by Rusti Miller-Hill)

HERStory of the Future (by Kamaria Laffrey)

Getting Pregnant While Living with HIV in 2015

(by Dawn Averitt)

Start Treatment as Soon as Possible (by Maria T. Mejia )

Comience el tratamiento tan pronto como sea posible

(by Maria T. Mejia)

In October (by Darlene Robertson/Southern Belle)

Lessons Learned (by Mel Painter)

The Day I Was Diagnosed - March 19th, 2013

(by Rachel Anne)

Hanging on for the Ride (by Lynda Arnold)

Leaning Into My Loss (by Mel Painter)

Replanted (by Tammy Kinney)

Each Day Renders a Right Now (by Rae Lewis-Thornton)

Loving and Knowing Yourself (by Christina Carta)

I Live in the Basement (by Aryah Lester)

Joyful Noise (by Mel Painter)

HIV vs. Dignity (by Ieshia Scott)

Invitation to Love Hate (by Lepena Reid)

My Depression, Trauma, HIV and Getting Help

(by Maria T Mejia)

Mi depresión, trauma, VIH y obtener ayuda

(by Maria T Mejia )

It’s All Good in The Hood! (by Mel Painter)

She Doesn’t Know Your Mutual Ex Is Positive. What Would You Do? (by Brooke Davidoff)

School’s in for the Winter (by Mel Painter)

Day One With HIV: 19 Years Ago, Today, I Was Given What I Thought Was a Death Sentence

(by Gina Marie Brown)

A Mother’s Love (by Nancy Ramos)

From Cowardice to Courage (by Jyoti Dhawale)

kauvaardis se saahas tak (by Jyoti Dhawale)

VIOLENCIA Y VIH (by Arianna Lint)

VIOLENCE AND HIV (by Arianna Lint)

The Highs and Lows of My HIV Journey – Part II

(by Angela Krebs)

Be A Survivor/Not A Victim (by Jyoti Dhawale)

ek uttarajeevee raho / nahin ek shikaar

(by Jyoti Dhawale)

Expecting Number Four (by Teniecka Drake)

Looking Forward to the Next 22! (by Lynda Arnold)

What I Learned While Isolating Myself

(by Angelena Cortello)

Ain’t I a Woman? Change (by Deneen Robinson)

Have The Courage To Live, Anyone Can Die

(by Jyoti Dhawale)

jeene ka saahas hai, koee bhee mar sakata hai

(by Jyoti Dhawale)

Almost Too Much to Bear (by Kiy’Ziah Vaughn)

Happy Birthday, PWN-USA - A Voice for the Voiceless (by Alicia LuvLee Diggs)

I Could Not Walk This Journey Alone (by Rachel Anne)

Update from Vickie L (by Vickie Lynn)

On the National HIV/AIDS Strategy (by Dawn Averitt)

Sisterhood (by Dianne Nyoni)

I am A Woman of Color I am who I am!

(by Davina Conner (Pozitively Dee))

My Four-Year Journey with Atripla (by Maria Mejia)

Mi viaje de cuatro años con Atripla (by María Mejía)

My Struggle with My Medication (by Jyoti Dhawale)

meree dava ke saath mera sangharsh (by Jyoti Dhawale)

I Grieve Publicly Because I Am Too Old to Do It Alone (by Sophie Jayawardere (Stigma Warrior))

Straight from the Heart (by Tracey Dannemiller)

Yes, I Am. So, What? (by Jyoti Dhawale)

haan main hoon. to kya? (by Jyoti Dhawale)

What Happened to the American Dream?

(by Christina Carta)

A Mom’s Pledge to End HIV in America

(by Dawn Averitt)

Domestic Violence/Abuse (by Jyoti Dhawale)

ghareloo hinsa / durvyavahaar (by Jyoti Dhawale)

When God Shows Up (by Rae Lewis-Thornton)

#USCA2015 (My Thoughts and Feelings, Most Importantly the Love I Felt) (by Maria T Mejia)

# USCA2015 (Mis pensamientos y sentimientos, lo más importante el amor que sentí) (by Maria T Mejia)

Sexual Relationships Amongst Sero-Discordant Couples (by Jyoti Dhawale)

sarlo-diskord jode ke beech yaun rishte

(by Jyoti Dhawale)

I Am (by Sherri Beachfront Lewis)

Moving Back Home (by Jyoti Dhawale)

parivartan karana chaahate hain? parivartan bano

(by Jyoti Dhawale)

Let’s Talk HIV – One At A Time (by Jyoti Dhawale)

chalo echaeevee se baat karen - ek samay par ek

(by Jyoti Dhawale)

Push, Drive In (by Monique Howell-Moree)

Nothing but the (by Connie L. Johnson)

Teaching with Care Not Fear (by Shyronn Jones)

Why I Ask Why (by Connie L. Johnson)

Rape in Words and Actions: A Disclosure Story

(by River Huston)

Just Breathe (by Connie L. Johnson)

One Pill at a Time (by Connie Johnson)

Criminal Musings (by Devarah ‘Dee’ Borrego)

Depass: Living with HIV: My Old Normal

(by Mariah Depass)

My Letter to HIV (by Dona L. Lackey)

The Dilemma of Dating Positive! (by Rae Lewis-Thornton)

Silence Serves No One (by Connie L. Johnson)

India and HIV (by Jyoti Dhawale)

bhaarat aur echaeevee (by Jyoti Dhawale)

April Fool’s Day (by Gina Maria Brown)

The Pros and Cons of Living Out Loud

(by Connie L. Johnson)

My Blessed Life-A Dialogue Poem (by Susan Mull)

Dating with HIV (by Rachel Anne)

Where Was I When AIDS First Came on the Scene? (by Rusti Miller-Hill)

Beyond Measure (by Connie L. Johnson)

An Advocates Thoughts (by Ieshia Scott)

HIV Is Not a Crime (by Tiommi Jenae Luckett)

Empowerment Through Cervical Self-Exam

(by Waheedah Shabazz-El)

In the Hustle and Bustle of Fall, No Day but Today! (by Lynda Arnold)

Release in Order to Heal (by Mariah Depass)

The People Upstairs (by Vickie Lynn)

The Struggles Are Making Me Stronger Than I Ever Thought I Could Be (by Maria T Mejia)

Las luchas me están haciendo más fuerte de lo que jamás pensé que podría ser (by Maria T Mejia)

#SOS2015 (by Tiommi Jenae Luckett)

What Is Post Exposure Prophylaxis (PEP)?

(by Tiommi Jenae Luckett)

I Wanted (by Tammy Kinney)

HIV Story (by Dominique Banks)

I Could Be Broken, But I’m Not Defeated

(by Tiommi Jenae Luckett)

My Life from (D) Day (by Cat Palladino)

My Story (by Rachel Nolan)

Respect the Vagina! (by Rae Lewis-Thornton)

Complicated (by Nancy Ramos)

An Attitude of Gratitude (by Tiommi Jenae Luckett)

‘I am" (by Mel Painter)

Pregnancy at 23 Weeks (by Teniecka Drake)

What Is HIV Stigma? (by Sherri Beachfront Lewis)

Celebrating with Pride 2015 (by Tiommi Jenae Luckett)

The Gift of Being Wrong (by Ruby Amagwula)

After Week One of a Trump Presidency, Facing Fears That My Son Will Have a Sick, Dying Mother

(by Brooke Davidoff)

Many Faces (by Inez Morris)

Mother, O Mother (by Aryah Lester)

The Peacock Is Well, Striving and Undetectable

(by Sophie Jayawardere (Stigma Warrior))

Woman to Woman (by Tiommi Jenae Luckett)

Why Healing Is Necessary in the Movement

(by Tiommi Jenae Luckett)

My Dad (by Rachel Anne)

Dear Sisters (by Tiommi Jenae Luckett)

A Widely-Publicized Event: My Decision to go Public with My HIV Status (by Elaine Henderson)

What I Would Tell Another Woman About PWN Speak Up Summit 2016 (by Davina Conner (Pozitively Dee))

Looking for Love in Negative Places (Mixed Status Dating) (by Elaine Henderson)

National Women and Girls HIV/AIDS Awareness Day – One Voice (by Monique Howell-Moree)

Long Distance Relationships, Can They Really Work?

(by Christina Carta)

I Found the Light at the End of My Tunnel Today

(by Angela Krebs)

A Present to Myself, on My 50th Birthday

(by Rusti Miller-Hill)

Chicas como yo (by Arianna Lint)

Girls Like Me (by Arianna Lint)

Knowing My Boundaries (by Vickie Lynn)

Anniversaries and Cure (by Devarah ‘Dee’ Borrego)

By the Grace of God (by Elaine Henderson)

Advocates’ Door (by Davina Conner (Pozitively Dee))

What am I? (by Mel Painter)

Loving Myself Too Much to Accept Stigmatized ‘Love’

(by River Huston)

EM[POWER] UP: A BOND That’s Made (by Stephanie J. Brown)

Faith Without Work Is Dead (by Elaine Henderson)

31 Weeks Pregnant and Climbing (by Teniecka Drake)

Poetry for the Revolution (by Susan Mull)

From the Crack House to The White House? (Not in My Wildest Dreams) (by Waheedah Shabazz-El)

For It’s A Healing Process (by Nancy Ramos)

Back to Back (by Ieshia Scott)

Where Are the Microbicides? A Never-Ending Wait (by Deneen Robinson)

The First Generation to Age With HIV: Taking a Look at Long-Term Survival (by Sherri Beachfront Lewis)

37 Weeks: Baby Coming in 4 Days (by Teniecka Drake)

The End of My Pregnancy Journey (by Teniecka Drake)

Trying to Find the Ups, When All You See Are the Downs (by Teniecka Drake)

Gonna Live Life (by Nancy Ramos)

Stigma, Don’t Let It Stop You from Helping Yourself (by Rachel Anne)

New Year’s Resolution or Not (by Nancy Ramos)

30 Years of Living with HIV – Who Would Have Thought? (by Vickie Lynn)

When Your Heart Is (by Nancy Ramos)

It’s Okay Not to Be Okay (by Monique Howell-Moree)

Lost Within Her Own Words (by Nancy Ramos)

I Want and Need (by Nancy Ramos)

On Being Sick (by River Huston)

Sometimes You Just Have Too

(by Monique Howell-Moree)

Pregnant While Positive: My Husband, Me and Baby Made Three (by Rusti Miller-Hill)

Your Voice (by Monique Howell-Moree)

HIV Is Not A Crime (by Monique Howell-Moree)

About the Editor

About the Contributors

Dedication

Audrey Pandora Singleton

October 13, 1995 – September 5, 2004

founding Executive Director, Project AZUKA Inc., Savannah, GA

Prudence Nobantu Mabele

July 21, 1971 - July 10, 2017

deputy chairperson of the South African National AIDS Council, co- founder and President of Society of Women and AIDS in South Africa.

The Denver Principles

We condemn attempts to label us as ‘victims,’ a term which implies defeat, and we are only occasionally ‘patients,’ a term which implies passivity, helplessness, and dependence upon the care of others. We are ‘People With AIDS.

RECOMMENDATIONSFORHEALTHCARE PROFESSIONALS

1. Come out, especially to their patients who have AIDS.

2. Always clearly identify and discuss the theory they favor as to the cause of AIDS, since this bias affects the treatments and advice they give.

3. Get in touch with their feelings (e.g., fears, anxieties, hopes, etc.) About AIDS and not simply deal with AIDS intellectually.

4. Take a thorough personal inventory and identify and examine their own agendas around AIDS.

5. Treat people with AIDS as a whole people, and address psychological issues as well as biophysical ones.

6. Address the question of sexuality in people with AIDS specifically, sensitively and with information about gay male sexuality in general, and the sexuality of people with AIDS in particular.

RECOMMENDATIONS FOR ALL PEOPLE

1. Support and membership in our struggle against those who would fire us from our jobs, evict us from our homes, refuse to touch us or separate us from our loved ones, our community or our peers, since available evidence does not support the view that AIDS can be spread by casual, social contact.

2. Not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles.

RECOMMENDATIONS FOR PEOPLE WITH AIDS

1. Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.

2. Be involved at every level of decision-making and specifically serve on the board of directors of provider organizations.

3. Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.

4. Substitute low-risk sexual behaviors for those which could endanger themselves or their partners; we feel that people with AIDS have an ethical responsibility to inform their potential partners of their health status.

RIGHTS OF PEOPLE WITH AIDS

1. To live as full and satisfying sexual and emotional lives as anyone else.

2. To receive quality medical treatment and quality social service provision without discrimination of any form, including sexual orientation, gender, diagnosis, economic status or race.

3. To obtain full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardizing their treatment and to make informed decisions about their lives.

4. To ensure privacy and confidentiality of medical records, to receive human respect and the right to choose who their significant others are. 5. To die - and to LIVE - in dignity.

Statement from the Advisory Committee of People with AIDS (1983)

In 1983, an AIDS diagnosis was a death sentence. The delegates to the 1983 Second National AIDS Forum in Denver who wrote the Denver Principles had all had their diagnoses, and they wrote from the point of view of men and women determined to die well and until then to do everything they could to bring change.

Today, HIV/AIDS is a manageable chronic disease—for most, not all. We get to focus more on the living well. We are no longer (most of us) People with AIDS, we are People with HIV.

But the main points of the Denver Principles are still valid. We will not be labeled as victims; we are capable, self-empowered people living with a virus. We demand a place at the table when HIV issues are being discussed. Care providers should treat us—and all their clients—as people with medical issues, not as passive objects of care. Stigma, legal discrimination, poverty, and unequal access to health care are not just health issues, they are social justice issues. We have the same right to fulfilling lives as everyone else.

Acknowledgments

I give thanks to the Most-High God for providing me with another assignment and trusting His will to my care.

Thank you to all who so graciously supported my Indiegogo.com campaign, especially Carrie Foote and Sean Strub in support of this publishing effort.

Many thanks to my childhood friend and neighbor, Lori Burns Ward for allowing her art, Being in Thought, to serve as the cover image for this project. Special thank you Tim Daniels, friend, photographer and documentary filmmaker for his head shot photo of me which graces the back cover. Thank you, Catherine Zickgraf for your direction, instruction and education in the art of editing.

I am extremely grateful to the founders of The Well Project, Dawn Averitt and Richard Averitt, as well as Krista Heitzman Martel who helped to launch A Girl Like Me in 2009, under the supervision of Dawn Averitt, in addition to the staff at TheBody.com.

To each Sistah represented in this work now is the time to give away our stories. It has been my great honor and privilege to take care of each of your stories.

editor, Khafre Kujichagulia Abif

Introduction

Brooke Davidoff fell in love with a man who was in a long-term relationship. He left that woman for Brooke, then later he left Brooke, too, leaving behind little, except her new HIV diagnosis. Years later, long after she’d last seen the philandering ex, a friend suggestion on Facebook yielded that first woman’s profile.

Something made Brooke send her a message. I knew us not being Facebook friends, she might see this message tomorrow, or it might take weeks. She might never see it at all. She might see my face in her inbox and delete my email without even opening it. She could write back, I stole the love of her life and what a slutty bitch I was. She might say I got what I deserved, and what did I expect?

But still Brooke wrote her, telling this woman that she and another of her ex-partner’s exes were living with HIV now.

If you haven’t already, Brooke urged, perhaps you should get tested.

The woman did not react poorly, she did not slut shame or stigmatize Brooke. Instead she asked about Brooke’s health and her son’s health. The two women instant messaged all night, about the ex, about losing his family too, about how each woman had moved on never looking back after being left alone by him.

Turns out that the other woman is HIV-negative, something that made Brooke happy. When she found out she was HIV-positive she felt obligated to contact all her exes and now she was contacting his too.

Brooke’s story is just one of many from the women in this worthy collection of letters, blogs, essays, treatises, speeches, and vignettes, no more or important than any of the others.

But it’s perfectly emblematic of what Sistah’s Speak aims to do in elevating the voices of women living with HIV, and the direction it takes to do so. You see, nearly every anthology of writing is wildly uneven with fresh but unpolished voices ceding to more experienced wordsmiths, their voices offering a collective voice but with varying degrees of skill. But Sistah’s Speak has done away with the pretense of trying to be lofty. This book is not attempting to be high art or fine literature and editor Khafre Kujichagulia Abif probably knows it will not make Publisher’s Weekly’s top 10 list.

What it does do the way other books cannot—and what must be done to speak to women living with HIV or AIDS today—is go straight to women themselves, regardless of their resources, or their access to education, time and training to know how to elucidate the reader with flourishes that grad school English majors love. Because who the fuck has time for that when you are learning you are poz, funding and managing treatment, dealing with stigma, protecting your love and life and family, managing a career or a disability or even other health conditions that keep women sidelined in their own lives?

The women in this book might sound familiar to those already in what we call the HIV community like Latina activist Maria T Mejia, Muslim leader Naimah O’Neal, and anti-criminalization expert Dr. Carrie Elizabeth Foote, a sociology professor who won the Positive Leadership Award at AIDS Watch 2017. Foote ascension is enough to give anyone hope: sexual trauma in her youth led to drugs and alcohol, a homeless dropout and runaway on the streets of New York City. At 18, after her partner died, she was in rehab where she learned she was HIV-positive. Now, over 30 years later, she’s one of the few women of her era who survived all that.

That’s the gist of the book though: resilience and survival in the midst of trauma and grief. Every woman in the book offers their own perspective on how they are managing (or not) with HIV and how their lives have collided and intersected and entwined with this now chronic medical condition that is still so stigmatized half of Americans assume it will eventually kill all who acquire it. (Hint: You’re more likely to die of heart disease, cancer, an auto accident, or several other medical conditions.)

The women all seem to speak to each other, as though they’re in women’s space: like at an old sewing circle or book club or one of those all-girl game nights where women talk amongst themselves with abandon. In part, this is because some of the entries, like Brooke’s, originally appeared as blogs on TheBody.com, where everyday women and men blog about their lives living with HIV. But generally, it’s the nature and the rawness of how the women in the book share their significant and mundane details of their lives, whether that’s about something big (the effect a youthful gang rape has on a survivor decades later) or to some small (like trying to deal with the mind-numbingly difficult navigation and bureaucracy of Social Security disability benefits).

And like a silent curator, the book’s editor has left women’s contributions largely unedited, printed in the many voices in which women around the globe share, so you’ll see entries in multiple languages (including Spanish, Hindi, and British English). It doesn’t matter if you can’t read the Hindi or understand the Spanish; what matters is that women pick up this book—women with HIV who have felt alone, isolated, different, unwanted, untouchable—that those women pick up this book and find one voice among the many they can identify with.

Sometimes, words on a page can be a life raft to those who need buoyancy. A whole book of those voices, like those in Sistah’s Speak, cannot just elevate the lives of women with HIV, but can also help drown out the noise that comes from living in our culture with a virus still stigmatized. It helps tell other women: you are not alone, you are not unlovable, you are worthy of great things. Persist.

With you in struggle,

Diane Anderson-Minshall

Editor in Chief of Plus Magazine

www.hivplusmag.com

We Call Their Names

Margrethe P. Rask - 1930 - December 12, 1977, Gia Carangi - November,18 1986, Suzi Sidewinder – 1987, Kip Ohman - July 25, 1987, Althea Flynt - 1953 – 1987, Amanda Blake August 16, 1989, Cookie Mueller 10 November 1989, Amanda Blake – 1929 – 1989, Cookie Mueller 1949 – 1989, Eliana Martínez – 1981 – 1989, Meghan Robinson - November 18, 1990, Patrizia Vicinelli - January 9, 1991, Doris Fish - June 22, 1991, Tippi - August 1991, Elaine Hill - October 11, 1991. Iris – 1991, Kimberly Bergalis - 1930 – 1991, Sharon Redd - January 5, 1992, A.J. Antoon - January 22, 1992, Tina Chow - January 24, 1992, Alison Gertz - August 8,1992, Sharon Redd - 1945 – 1992, Tina Chow - 1951- 1992, Eve van Grafhorst - 1982 – 1993, Morrelle De Keigh – 1994, Cláudia Magno - January 5,1994, Chris Butler - April 30,1994, Cathy Stewart - August 1994, Sonia Martínez - September 4,1994, Elizabeth Glaser 1947 - December 3, 1994, Cyrstal – 1994, Angel – 1995, Evelyn - July 1995, Vicki – 1995, Leslie Graves - August 23,1995, Gervase Jackson-Stops – 1947 – 1995, Ilka Tanya Payán -January 7, 1943 – April 6, 1966, Dolzura Cortez – 1996, Lucille Teasdale-Corti - 1929 – 1996, Paula – 1997, Ellen April 2, 1998, Lisa Melendez September 1, 1999, Sirpa Lane – 1999, Catiria Reyes - May 3, 1999, Teresa Dannemiller – August 1999, Ofra Haza - 1957 - February 23, 2000, Sandra November – 2003, Fernanda Terremoto – 2003, Tuan - December 2004, Edith - September 2004, Sandra Bréa - May 4, 2004, Karen Dior - 1967 – 2004, Kelli - Augusta 2005, Gloria - February 2005, Doris Gonzalez - September 18, 1951 – March 17, 2005, Yvonne Vera - 1964 – 2005, Surama Valencia January 1, 2006, Joyce – 2006, Nozipho Bhengu - 1974 – 2006, Christine Joy Maggiore (July 25, 1956 – December 27, 2008, Christina Maggiore - 1957 – 2008, Satiny Mirand - October11, 2009, Lika Dobryanskaya - April 22, 2010, Paulette - October 29, 2011, Vendetta – 2012, Cleopatra Rose - Detroit Michigan 2012, Cicely Bolden - September 6, 2012, Shica - May 11, 2013, Bridget - May 10, 2013, Keizy Maria - August 2, 2013, Petra – 2013, Gwen - Atlanta, Georgia 2014, Loretta - November 21, 2016, Alexis Arquette - September 12, 2016, Vanessa Sharp-Cephas - April 7, 2016, Byanca Parker, Dallas, Texas - October 26, 2016, Monique June 2017, Loretta June 2017, Johnteal February 2017, Dominique November 11, 2017, Channing-Celeste - June 28, Sharmus -July 9, Elizabeth Nolan, Nadja Benaissa - born 1982, Nettie, Tricia Devereaux - born 1975, Marina, Celeste, Sandy Johnson, Pati Pendroti

Well Woman Prayer

We join our hearts together for a vision of healing over every woman, girl, baby child who is hurting, confused, victimized, who is full of shame or guilt from any circumstance which has brought pain, fear, or entrapment.

We call out as strong women, women of courage, women who will break through barriers, tear down strongholds, curse are broken, able to overcome defeat, washed clean, declaring victory, growing spiritual muscles, changing our minds.

Believing we are well women, we pray now for this wellness, this healing strength, support and courage of women here in our town, in our state, in our country and in the world. Claiming we are well women being healed, lifted up, renewed, refreshed, and rejuvenated from any disease which is weakening our mind and bodies.

Protection surrounds us, as love abounds, we speak power of wellness for the misguided, giving a new mind, anointed, fully equipped to become conquers for all the women we are praying for.

Our prayer is that all will become well and heaven will provide for the wellness of women.

Lepena Reid

Gratitude — In Spite Of

I heard the birds singing and I opened one eye to see if the sun was out. I could barely move from exhaustion from the BlogHer Conference and the nerve pain medication which I’m taking, makes me groggy, but as I lay in bed this morning my heart was filled with gratitude. I could hear and see and, in spite of my exhaustion and pain level, I could even move. I opened both eyes to check on my baby girl, and Sophie was buried in the pillows next to me sleeping like a wild child and probably happy to be home from the four-night stay in the hotel this past week.

I checked my phone for the time, it was 5:30 a.m., and I crawled out of bed to use the bathroom. As I lay back down, I remembered out of the blue of the time I woke up in a hotel room and I couldn’t walk. I had to crawl to the bathroom and back to the bed. I was on the road planning to speak at the University of Illinois in Champaign, and overnight I developed herpes zoster (shingles). The pain was so intense walking was near impossible. It was at an event for Delta Sigma Theta Sorority, Inc. and I was determined to not leave my Sorors hanging. My doctor wanted me to come home immediately, but with a hard head and determination I stayed.

By that evening I had sores from the top of my butt to the bottom of my feet. My Godchild, Toi, took the bus down to be with me and that night she had to help me get dressed. That night, I stood by the grace of God for almost two hours in four-inch heels. Toi drove me back to Chicago, me laid out in the back seat of my car. When we arrived home in the middle of the night, I had to crawl up the two flights of stairs to get to my apartment and crawl back down that morning to go to the doctor. Recovery took over a month. I couldn’t walk and morphine was the only thing that relieved my pain.

No matter how I look, or how active I seem to people, I understand clearly, with AIDS you can get hit from nowhere and it is what it is. Most days I get hit, it’s just some days I get hit harder than others. Somedays I smile through it, other days I cuss through it.

Because this life of AIDS is unpredictable, I never take it for granted. Now, don’t be confused, there are days when I think I’ve had enough. Days when I want to cuss, fuss and rant through it and do, and a smile is foreign to my face. Days when I want to say, Enough is enough!

Like these past three weeks on IV medication, I was so sick I couldn’t think straight and I had a funky attitude to go right along with how I was feeling. People don’t understand the drama one is faced with when a medication which is making you better in one area but it also makes you so sick in another. For sure, for me there is a hopelessness I feel. It’s like being stuck between a rock and a hard place. Especially when I have no control. It makes you lose perspective, the larger picture.

Yet at the end of the day, I understand that life is a blessing. I get it. I’m alive! This is my life, my struggle, but yet I still have gratitude.

So, this morning when I heard the birds singing, telling me it was a new day, I was overwhelmed in my heart and my spirit.

Today, I had perspective and with perspective, I could smile, smile because I could hear the birds singing, see my baby girl laying peacefully next to me. I could walk to the bathroom on my feet and despite all I’ve been through, I still have my right mind. I was filled with nothing but gratitude this morning in spite of my life with AIDS.

Rae Lewis-Thornton

Let the Haters Hate

It is one thing to have to wake up every day and deal with being HIV positive. It is quite another issue to have to deal with a hater. Let me just say the playing fields are not even. Why in the world am I talking about haters? Is this blog not supposed to be about positivity? This is still true and my writing will be just that, positive.

Let me jump into haterville really quick! Many times, I come across people who are genuinely happy for me. Really it does not matter for what, just generally speaking. Recently, I have been wondering about friends and people who I have known for years. It struck me that there are some haters in my midst. I will give you an example so you will see just what I mean.

I had a girlfriend who I had known since grade school. Of course, like any other friendship we had our differences. To give you a tiny bit of back story on my friend. My friend at the time was one of those women who crave male attention. She always looked for a man to validate her worth.

Anyway, back to my story. Last year she contacted me after several months of no communication from her. Of course, apologies were flying for her lack of being a friend. I asked her one day on the phone why it is she never comes over anymore? She stated that every time she comes over it just reminds her of what she does not have. I am not a wealthy person, but to different people I guess my simple lifestyle appears differently.

I thought to myself, huh, what did she mean? I rent and I am a homemaker, no new fancy cars. Then it hit me, she meant me being married and having children. I had a family which for most people friends rejoices in the good, usually. Instead of being happy for me she turned into being envious, jealous and even a little bitter. Basically, she turned into a hater!

Many people have said you need haters. These are the people that know your life is turning around for the better. How can this be when she has HIV? I really think if you look around very closely you will find one or more. If you have one or more good for you. You are doing something that causes them to notice you. Let the haters keep hating! Do not be surprised if you dwell on wondering, what is their problem? You may be happy the sun is out and they are mad. Smile and say today is going to be a great day. I am going to be okay! Let the Haters hate today. They will not bring me down on this day or any other day.

Teniecka Drake

Mystical World

For I depend on me to survive in this mystical world.

A world with so many twist and turns,

a world undoubtedly confusing for some,

including me.

For I depend,

only on me to conquer all of life quests,

all of life’s journey without a doubt of not giving up!

Keep moving forward for I tell myself,

lead your life and don’t look back,

spread your mental wings way up high,

and fear nothing that stands by your side.

For I depend only on me,

to bring me to arise from nothing,

but begin with something that I can see before me in this mystical world that I call home.

Life is like an open book,

there is good,

there is bad,

barely any in between,

but, there is me

a beautiful soul,

who gives a damn of everything and everyone,

but, sometimes forgets about me

living in this mystical world!

Nancy Ramos

Does HIV Still Bother Me, After 22 Years?

This morning as I was walking my dog, I was doing a mental checklist about what I need to do before I take my upcoming trip to India. I thought I should get some blood work done before I go. Then, as my mind sometimes does, it wandered. I thought Why not get another HIV test? It has been 22 years since I had one. As I continued my walk down to the ocean I started to fantasizing about what it would feel like to receive a negative result.

Good news, Ms. Huston: You are HIV negative.

Even the words seem foreign: HIV negative. But as I said them in my fantasy nurse voice, my heart lifted and it felt like a huge weight was lifted. I was shocked! After all this time, I really did not think HIV had that much effect on me. It has been over two decades. I am relatively healthy, I barely think about HIV except when I take my meds and that is usually just a thought, Don’t forget the pills! Done. But in this little daydream I was free of the pills, I was free of being seen as someone who is diseased (Just go on a regular internet dating site; the phrase, Disease and drug free, you be the same is common).

It would mean saving thousands of dollars in health care each year, and no more quarterly doctor visits. Gone would be the underlying fear of getting sick, especially when I travel overseas.

I also realized I still had despair and depression about carrying the burden of living with AIDS. It made me maudlin and the rest of the day I kind of gave up. Every day I walk, eat right, try and connect with someone for a laugh, write, paint, a whole host of activities to keep my spirits lifted. I didn’t feel like it today and went back to bed. Had a pity party and no one else was invited. (Until now; welcome everyone!)

I have fought for all these years to not let HIV get me down and I believed I had conquered it but after my morning walk I have come to believe that you cannot outrun your reality. This is my hardship in my life. It affects me in a myriad of ways, some I was barely aware of until today. So, what to do? Give up or continue to do the work? The option to sit in my room and try and sleep it away didn’t really work out well. So, onward I go.

As I write this I am sad but oh well, that is life. This month three of my friends chose to commit suicide. Their demons got the best of them. It has been shocking, distressing and in one case devastating. So, there is always that permanent exit, but I see I have a choice. Today I grieved another kind of loss. I mourned for the life that could have been if I had not become infected. Who knows what it would have looked like or what challenges I would have faced? AIDS, yep, I said it, is my forever roommate, bad houseguest, crappy relationship, but I don’t have to think about every minute of every day. I can let these thoughts sink back down into my unconscious and add a prayer in the morning for a cure.

Battle Weary: A Poem

Is it over yet?

crawling from a foxhole

made in the dirt

thirty years’ deep

the bodies are piled up

some old as cordwood

other freshly departed

Goodbye Ben

baby honey boy

you texted me

just last night

don’t get it bro

but you’re in God’s hands now

You didn’t get the memo?

it gets better, man

but I get it

you just worn out

worn down

How long can you live?

with death firmly planted by your side?

it’s that way for everyone

but for us it’s visible loud

intrusive

bony hand on your shoulder reminding you

of everything you ever done wrong

I manage it

just some days the insides

turn to mud

and I can’t get a grip

When the smoke cleared and the artillery

went from heavy mortars

to the occasional sniper fire

you’d think I’d handle it

cause I did the big fights

I survived sister

but it seems to have gotten worse though

when everyone was dying

somehow it was easier

it’s that lone warrior

falling when you least expect it

it takes me down every time

This sadness is fierce

grief rolled up like punch

my ghosts

are loud

especially late at night

waking to conversations

long forgotten

My love, my love

how I miss you

Sunrise brings another day

some tea

put on the good face

the sea helps

if it doesn’t make me cry

it gets me through another day

River Huston

89 T Cells from An AIDS Diagnosis

Yes! Sad but true, this is my current situation and it stopped me dead in my tracks. Basically, I overwork myself and stressed about things I shouldn’t be stressing about. I try to overcompensate from time lost in my youth…and I am killing myself slowly while doing it. I take my meds every day and vitamin infusions constantly, plus juicing, and eating, and exercising as much as I can. I am undetectable and have been for almost 16 years. So why if my medicine is working and I do everything to have my CD4 cells go up and my percentage as well, am I experiencing 289 T Cells? Because of me.

So, after my boss Krista Martel, who is an amazing human being, from The Well Project ordered me to not work and take the rest of the week off, I said Wow, I am doing a good job!

I have amazing people around me: Lisa, my Mom, Dad, friends in my groups, people I know, even my friends from the CDC and especially Amber Dukes whom I like so much! She sat with me while we were doing a PSA for CDC #STOPHIVTOGETHER and said, Maria, I am worried about you! I listened. I felt I was going on empty! I have been traveling nonstop for like a year and a half! And on top of that, I am a ‘yes person’ so I am doing a million things at a time!

As a Global Ambassador for The Well Project, I am part-time, but I often choose to work so much I have completed my hours for the whole month by day 10! As Krista said to me, and I will never forget, We brought you in because of the work you already do and to try to compensate for your time spent! Not to overwork you or have you get sick. I don’t know how I will ever repay The Well Project for all their care. What loving and caring people they are. I will support them until I die. If I ever become wealthy I will be one of their top donors! Believe that! So, after the talk with my boss, I decided I would disconnect and use social media for around an hour, not 16 hours like before. I took some days off and cancelled a trip I had pending for April.

I am going to listen to the advice and I am hearing and I will not continue pushing my body this way. I think all the good care, taking my medicine, and alternative treatments which I do help me. They must help me because, if I were not supplementing myself with something I would have already dropped dead. Believe that!

So, what is the moral of this story? What my Father said to me, If you work to live, why do you kill yourself working? And this is so deep and tru. I am a soldier and a warrior! I have a high work ethic. And because my past was filled with many mistakes made me stronger. I must forgive myself and not be so hard on me! It is okay to relax and not be on the go. I can’t fear loss or losing my job! I know I do a very good job and it felt so good to hear that from Krista. She doesn’t know this but I cried after we spoke. It was cleansing. She uplifted me as a human being and a person. All bosses should take pointers from her. She is compassionate and has empathy when she herself is overloaded with work. All the people who gave me advice and talked