From Day One to Today: Becoming a PLHIV

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 By: Jonathon Arntson

Hello there. I’m Jonathon. I work at UNIFIED –  HIV Health and Beyond as the Health Education Coordinator. Three plus years ago I became HIV+. Since then I’ve experienced my ups and downs, but I keep myself getting through it with support from friends and family, helping others where I can, and maintaining a sense of humor no matter what. One way in which I am doing that is to share my experiences (adventures?) as a person living with HIV (PLHIV) who also works in the field. You can look forward to me sharing those with you a couple times a month. It’s my hope that my writings will prompt us to engage in progressive discussions about the state of HIV today. I also hope that anyone reading will be inspired to share their own stories. I shared my first day story on thebody.com. You can view it here and you will see snippets peppered into my ongoing posts. 

After I tested positive, I received the “first day” welcome kit of a blood draw, pamphlets, referrals, and you-must-use-condoms-now finger-waggings . Then, I arrived home to begin coping. I felt like I was beginning the same transition you witness in old vampire and werewolf films.

I noticed little changes here and there. After a while, the changes felt deeper like every bug bite or blood cell had mutated into weird little monsters. After a while, I didn’t even realize I had a fever until it began dissipating. I fell asleep and woke up a few hours later. But instead of waking up with powers or sharper teeth or fur all over, I felt exactly the same. And the fever had been a result of emotions. My blood felt the same inside me, and I would soon learn it looks the same. I was beginning the (still ongoing) grieving process.

Although I was still reeling from the werewolf episode, the day after my confirmatory result was also my first day back at work. At the time, I was working at a housewares store–the brand at which I had worked for five intermittent years. When I started that night’s shift, I’d mostly forgotten about my transition into a mutant. As happened too often at this job, I cut my finger on something. Getting cut is inevitable at this home store. Between glass, cardboard, splintered wood, and unloading trucks, getting cut is inevitable at this homestore; I endured hands covered in bandages on the weekly. I did not see it coming but this first day as a new creature gave me a crash-course in accepting myself as-is.

As soon as I cut my finger on a broken vase that a customer left sitting on a shelf, I was transported to a Tarantino film.

Blood sprayed from my hand, and then from my fingertips. Each blink changed my surroundings between neon colors like I was in an early iPod commercial-turned-horror film. I rushed to the restroom, locked myself in, grabbed a wad of paper towel, and crouched into a vertical version of the fetal position. I stayed in the restroom for half an hour as I worried about what I should do. I knew I needed to rinse off my hand but I was afraid to get blood on the faucet handles.

I finally overcame my dread and turned on the water. Instead of sticking my now mostly dried, bloody hand into the water, I plunged my face into the cascade and washed away the irrationality. I cleaned my hands, cleaned the minimal blood off the sink, and left the restroom to dress the wound as though nothing was out of the ordinary. To this day, I still have a small panicked feeling when I see my blood. This feeling diminishes the more I learn about HIV and how being undetectable equals untransmittable.

Speaking of undetectable, I will be sharing many posts grappling with the drama and trauma of being a patient and a case worker/educator.

Months after testing reactive, I volunteered at UNIFIED (formerly AIDS Partnership Michigan). I didn’t know how to talk about HIV or what I was going through. It was easier to say I was “fine” and gulp than to own up to my not knowing what the hell to do or say.

But I showed up, answered calls on the Michigan HIV/STD Hotline (800-872-2437), and covered the front desk. My time volunteering allowed me to hone my communication skills while building confidence in the facts surrounding HIV and how I engaged with them.

I then gained knowledge and confidence working on and off with CARES of SW Michigan and Mr. Friendly to co-facilitate weekend camps for positive men. We learned about disclosure, healthy relationships, and the ongoing science behind HIV. This involvement put me right in the middle of being a person with HIV as well as a counselor for my peers.

I spent my first year employed with UNIFIED as a Linkage to Care Specialist. I worked with newly diagnosed individuals, those who had fallen out of care, and those who had recently relocated to Metro-Detroit. I went through Linkage to Care as a client and when I had the opportunity to switch sides and become the specialist, I was anxious and excited. I had never had a “real job”  before. Taking that opportunity lead me to an even better one, and two months ago I became the Health Education Coordinator at UNIFIED. This position has me in charge of support and education groups, building and maintaining partnerships with peer AIDS service organizations (ASOs), medical clinics, and community agencies offering services to address needs well beyond HIV care.

Beside working at UNIFIED, I participate in panels and discussions as a PLHIV, work on the draft of an autobiography, and write letters to my legislators imploring them to support drastic augmentation to the Michigan HIV Disclosure Law. Lastly, I am working on a website that will offer a space for PLHIV and their loved ones to share their stories. This project has many logistics and barriers to deal with and I am moving very slowly. If you are inclined to help, I would never decline.

Thank you for reading and I look forward to offering you more insights and anecdotes about how I got to being more than just “fine.” Whew. It was really nice to write about myself without it being on a dating app.

Love, Jonathon

social media:

Facebook: jonathon.arntson

Instagram: @themanwiththemichigantattoo

Twitter: @monkeyboydet

HIV IS NOT A CRIME – Michigan Lobby Day

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received_10153359466535938 By: Sidney Skipper

Sidney Skipper talks about his experiences at Michigan Lobby Day in Lansing.

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I’m in Lansing, Michigan at the State Capital Building, with officials from the Michigan Coalition for HIV Health and Safety (MCHHS), Kelly Doyle and Todd Heywood.  We’re joined by Teresa Perrin whose son is serving a seven year sentence under Michigan’s HIV Disclosure laws.  We’ve gathered here on this beautiful fall day to speak with State Representatives, Brian Banks, Winnie Brinks and Tom Cochran, about co sponsoring a bill that would amend the 1988 Michigan HIV Disclosure Laws, (MCL 333-5210), to place responsibility on the prosecutor to prove intent to transmit the virus, and that transmission actually occurred.  Right now the law is vague and left to interpretation, it ignores the intent requirement, and while the CDC categorizes spitting and biting as low risk for transmission, persons can still be prosecuted for these actions. Nor does the present legislation take into account that in 2016 an HIV diagnosis is a chronic manageable condition.

Did you know that in Michigan you can be charged with a felony and jailed for 4 years or more for not disclosing your HIV status to a partner?  An HIV diagnosis is no longer a death sentence, and yet men and women in Michigan and around the country are sitting in prison for non disclosure, and in some cases placed on a sex offender list, even if they didn’t transmit the virus to the accuser, even if they used a condom, and even if they’re on medication that lowers the chances of transmitting the virus by up to 96%. Thirty three states have laws that explicitly focus on people living with HIV, the only infection that can become a felony, in spite of the fact that there are other diseases that are transmitted in the same manner, and can also lead to death if left untreated, for example, Hepatitis B.  Iowa and Colorado are the only two states to have amended their laws to reflect the new science of HIV.

The US Department of Justice states, “While HIV specific state criminal laws may be viewed as initially well intentioned and necessary law enforcement tools, the vast majority do not reflect the current state of the science of HIV, and places additional burdens on individuals living with HIV.”   According to the PLHIV Stigma Index Detroit, 88% of respondents don’t trust Michigan courts to give them a fair hearing if they are accused of not disclosing their HIV status to a partner.  62% felt that it’s reasonable not to get an HIV test for fear of prosecution. 46% felt that it was reasonable not to disclose their HIV status for fear of prosecution. And over half of the respondents felt that it was reasonable not to seek care out of fear of prosecution.  Just because someone doesn’t disclose their HIV status doesn’t mean that they want to hurt their partner.  The choking fear of stigma and unjust prosecution is silencing, and it’s stifling our efforts to completely eradicate this disease.

I was diagnosed HIV positive twenty-five years ago, on October 29, 1989, and given a year to live. Since 2000, I’ve been on ART (Antiretroviral Therapy), one pill a day.  The virus is undetectable in my blood, which makes it unlikely that I can pass the virus to a partner during sexual intercourse. I will not deny the anguish that living with HIV causes, and has caused me over the years, but I have never held anyone but myself responsible for me contracting the virus.  As I told Representative Cochran:  To accuse a person of non disclosure, to jail them and ruin their life, while we no longer die from HIV if we’re in treatment with undetectable levels of the virus in our blood, seems to be cruel and unusual punishment to me.

All of the representatives or their aides that we spoke to on this day were gracious and receptive to our recommendations. The new bill that MCHHS crafted does not repeal the disclosure statutes all together.  A key part of the new legislation states, “A person who acts with the specific intent to transmit the HIV infection to another person, and engages in conduct that poses a substantial risk of transmission, and actually causes HIV infection to the other person, is guilty of a crime punishable by not more than 1 year or a fine of not more than $1,000, or both.”  When you take into consideration that HIV is no longer a death sentence, misdemeanor charges, rather than felony charges, are sufficient consequences for an intentional transmission of a treatable, infectious disease. If I might add, intending to infect someone with the Human Immunodeficiency Virus is very rare.

My personal feeling is that the laws should be repealed all together, but during a conference I attended earlier this year, I was told that because of the stigma, the animus surrounding HIV, prosecutors would use other legislation to prosecute offenders with the intent to infect, but with this legislation we are the gatekeepers.  UNIFIED: HIV Health and Beyond joins The White House National HIV/AIDS Strategy to End HIV, to support this bill, because it aligns with the  current science, and because we are dedicated to advancing prevention, providing access to healthcare, community research and above all, advocacy that we feel advances the dignity of people living with HIV.

My most memorable meeting of the day was at the Capital offices of the primary sponsor of the bill, the Honorable Jon Hoadley of Kalamazoo, Michigan.  Representative Hoadley is a formidable champion dedicated to modernizing the Michigan HIV Disclosure laws. He would like to have at least thirteen co sponsors for the legislation before he introduces it.  We’re already halfway there, thanks to the hard work of past advocates, and today we may have added four more. The MCHHS has another lobby day scheduled for November 11, 2016, and we need all of the advocates that we can muster to stand with us.  This is a call to action for those interested in reforming our outmoded, unjust HIV Criminalization Laws, to come on out and join us in Lansing, Michigan on November 11, 2016, in the gilded halls of the Michigan State Capital building.  Todd Heywood, the Policy Director for MCHHS encourages us to, “Take responsibility to empower ourselves to protect ourselves and our partner.”  For more information about the next Lobby Day contact Todd at, Todd@MCHHS.info, or call 517-899-6182.

AIDS Survival Syndrome Excerpt from Lust or Love: A Gay Odyssey

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received_10153359466535938By: Sidney Skipper

“Sweating, heart palpitating; suddenly I’m awake, sitting up in bed. “My body, something is happening inside my body.” The spot where I was sleeping is soaked. It’s 4am in the morning. Kenny is laying sound asleep next to me. “Something is happening inside my body.” Thoughts of AIDS rush around my mind: Flu symptoms, night sweats, high risk, enlarged lymph nodes, no cure. My anxiety is replaced with a decision to get tested immediately.

I try to go back to sleep, but when Kenny wakes at 7am I’m still wide awake. “We’ve got to get tested.” Kenny doesn’t know what I’m talking about. I show him the soaked spot on my pillow, and explain this dread fear that I have. “I may have AIDS and I need to know.” Now, Kenney is the type of man who feels that as long as he isn’t sick, he doesn’t want to know, or need to know, whether anything’s wrong. It’s important to me so after a couple of days of discussion he agrees to go with me to get tested for HIV.

It’s early October, 1989, the leaves on the trees are emblazoned with colors ranging from lush browns to bright yellow, vibrant red and orange. The air is crisp and clear. On the way to Henry Ford Hospital, where HIV/AIDS anonymous testing is done, I look out of the car window at natures kaleidoscope of color as if I’m looking at it for the last time.

When we arrive at the hospital we’re directed to an isolated wing where one person is drawing blood and counseling. Very little is known about HIV at the time. We’re told that we would have the results of our blood test in two weeks. “Two weeks.” Needless to say those two weeks are filled with visible anxiety for me. Kenny on the other hand appears apathetic. I call Kenny’s apathy invisible anxiety.

The phone is ringing. It’s 9am October 27, 1989. “Hello.” “Hello, Mr. Skipper, this is Bill Townsend. We need for you and your partner to come in to the clinic to receive your test results.” It’s the counselor from the testing center at Henry Ford Hospital. “Can’t you give them to me over the phone?” “No,” is the response, “Against policy.” I knew that. I don’t know why I asked. “OK, we’re on our way.”

The Palmer Park area off of Woodward Ave. and six mile road in Detroit was once a predominantly Jewish neighborhood. Now it’s a predominantly gay neighborhood. Most of the gay black males and females in Detroit pass through Palmer Park at some time in their life. The rent for apartments and housing surrounding the park range from moderate to very expensive accommodating tastes for the simple as well as the sublime. The park is about six miles in diameter, with a wooded area, a pond and an old log cabin with some historical merit. Summer art fairs are held there, the Hotter Than July Gay Pride picnic is also held there. There are areas for family picnics, a playground, golf course, tennis courts and a swimming pool for the children. The parks diametrically round landscaping makes it ideal for inner city joggers. Its large parking lots also make it a superb cruising spot for straight and gay cuties eager to show off their sexy bodies, and their array of wonderful new cars that only Detroit can produce.

After leaving the appointment at the Henry Ford Hospital clinic, Kenny and I drive to Palmer Park and park in one of the lots under the canopy of the magnificent autumn sky. We finish of a fifth of rum and coca-cola, and smoke a joint. Our HIV test results came back positive. We don’t discuss how we got the virus or who infected us. We don’t accuse one another because we have always practiced safe sex. We must have had the virus when we met. At this point where we got the virus from is not important. What to do next is. Although the doctor told us that we would be dead in a year, I’m not depressed. I’m a child of the sixties, the generation that questioned the inherent value of everything, and believed that we could achieve anything. “Pass the joint Kenny.”

That was twenty-five years ago. I watched and waited for death while my friends and lovers passed away before my very eyes. Kenny passed away in 2005. I woke up one day and realized that I had survived what they now call the “AIDS Generation,” those of us who contracted HIV over twenty years ago when it was a death sentence. We helped to build the successes that the newly infected now enjoy through years of advocacy and caring. We are the last of our generation. We hold all of its memory, all of its history. In the throes of a plague no one thought about those of us who would survive. How do you deal with life after expecting to die?

The national strategy to tackle HIV/AIDS now is focused on the youth and prevention, as it should be. The needs of Long Term Survivors are somewhat different and are only beginning to be addressed. Many HIV long term survivors suffer from what is known as AIDS Survival Syndrome (ASS), a form of PTSD. In 2012 Tez Anderson and Matt Sharp launched a grass roots community group for people who survived the early years of the AIDS epidemic, called Let’s Kick ASS. ASS is defined by chronic anxiety, isolation, survivor guilt, depression, substance abuse, insomnia, sporadic anger, sexual risks and a lack of future orientation. Those without partners often have less income making them vulnerable to financial hardship. Some are too emotionally damaged to form new relationships or friendships for fear of being abandoned. Given a year to live some liquidated their assets, signing away their financial future. Between 2009 and 2012 suicide accounted for 4% of all deaths among people living with HIV in San Francisco, far above the national average of 1.5%. Like in the early days of the AIDS epidemic when we rallied to care for each other and ourselves, we must rally once again to understand and overcome ASS.

UNIFIED – HIV Health and Beyond salutes our long term survivors. Since 1983 UNIFIED has been a port in the storm and trusted ally for people living with HIV. UNIFIED remains dedicated to servicing the needs of those infected and affected by HIV by advancing prevention, access to health care, community research and advocacy. After Kenny died I reached out to AIDS Partnership Michigan, now UNIFIED – HIV Health and Beyond. They helped to educate myself and my family about the realities of HIV. For more information about ASS and the Lets KICK ASS campaign visit their website at http://letskickass.org/UNIFIED is available to assist you with any issues you may have. Please feel free to contact us, 313-446-9800. www.miunified.org  You are not alone.

Sidney Skipper

PLHIV Stigma Index Leadership Council member

Author, Motivational Speaker

PLHIV Stigma Index Detroit Visits D.C.

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received_10153359466535938 By: Sidney Skipper

Sidney Skipper on his visit to Washington DC to present research findings from The PLHIV Stigma Index Detroit-

    He’s from Ethiopia. A gentle English accent falls effortlessly from his lips.  I’m in our nation’s capital, Washington DC, to attend a meeting with colleagues to discuss our grant proposals for AIDS United’s Positive Organizing Project grant, on HIV related stigma. He’s the taxi driver bringing me to my hotel along the tree lined avenue of the Potomac River. Across the shimmering river, coming up on the right, I see the staid, white, elongated, majestic, marble columns of the Lincoln Memorial. The taxi cruises past it, and I gaze at it in awe as it disappears in the distance. When we arrive at the Palomar Hotel, I step out of the taxi into a cool spring day, blue skies dotted with bulbous puffy clouds, smiling at the thought that I just left one inch of snow in Detroit. Walking into the grand hotel lobby reminds me of my early years in the Theatre when I toured Europe and the Caribbean. I walk a lobby like it’s a catwalk, all the way up to the check in desk.  He’s Nigerian and has kind eyes, and then I realized that he’s giving me a room on the 15th floor via a glass elevator. Did I mention that I’m afraid of heights?

   The AIDS United offices are not far from the hotel. In the taxi ride there the next morning I see cherry trees lining the road that were in blossom last year when I was here. I ring the bell to enter the AIDS United office building.  The facilitator of the meeting invites me in and graciously guides me to my morning tea, in a room that smells like coffee brewing. The smiling face of a beautiful brown skin woman in a crew cut is the first of my colleagues that I meet. She is a Health Outreach specialist at Chicago’s Women AIDS Project which has been empowering women living with HIV since 1988. Slowly other colleagues begin to enter the room.  Each one brings years of HIV/AIDS expertise in with them. We shake hands, introduce ourselves and put on a name tag.

    Michael Kaplan, the CEO of AIDS United opens the meeting on a welcoming note. The first person to present is a tall together brother from Indianapolis that leads Brothers United Inc., which focuses on addressing the impact of Indiana’s expanded Medicaid program on people living with HIV. Brothers United also works towards establishing a statewide consumer advisory board for HIV related issues by engaging both clients and lawmakers. The next person to present titles his presentation, The Winter Gathering of Maine. When he speaks of being able to look out of his living room window at the ocean, the isolation of Maine seems to be an unlikely place to bring people living with HIV together to build community, education, advocacy and strong allies. But when he glowingly tells us about how the AIDS United POP grant made it possible for his team to develop a Peer Advocacy and Peer Ally Group of HIV positive people in Maine.  Maine didn’t seem so isolated after all. Sitting next to me is a New Yorker, dreadlocks, stylishly dressed and well spoken. He’s VP for Community Mobilization at Housing Works in New York City.  They are dedicated to building a new generation of positive leaders, speaker bureau training. Facilitating leadership roles of the most marginalized of our community not just “at the table,” but, “setting the table,” as the well-spoken brother with dreadlocks so eloquently puts it.

  I glow during the lunch break while conversing with a warm pretty young blonde that left her new born baby girl to grace us with her presence. She’s a Field Organizer in Atlanta for The 2015 Youth HIV Policy Advisors (YHPA) program. They have trained hundreds of youth advocates at the Capital to testify at HIV hearings on Capitol Hill. She can’t wait to get back home to her darling baby girl. She has us all laughing at her new mother stories.  She says last night at the hotel was the best sleep that she’s had in months. After lunch our Transgender colleague from Philadelphia presents. She has  smooth caramel colored skin, hour glass shape, almond eyes and shoulder length black hair parted on the side. She’s stunning. She starts nervous but captivates us with her finesse and beauty as she speak about Mazzoni Center: Trans Leadership, Advocacy and Engagement. Their Sisterly L.O.V.E. workshops take a holistic approach to working with the Trans communities by acknowledging that HIV is one of many issues that impact Trans women.  Positive Women’s Network; Philadelphia Chapter, are the next to present. I have had the pleasure of meeting many talented women affiliated with the National PWN. Their members are champions of stigma and are on AIDS Service Organizations (ASO) organizational boards.

    My presentation comes last in alphabetical order.  Its titled, The People Living With HIV Stigma Index: Detroit. After hearing the presentations of my colleagues I felt somewhat humbled, so slowly I began by saying………….. Myself and ten amazing people living with HIV and our allies piloted the stigma index in Metropolitan Detroit back in 2014.  A diverse group of seventy individuals living with HIV were interviewed. Once the interviews were complete, measurements of internalized stigma, perceived stigma and social isolation were analyzed according to age, race, gender identity, economic hardship and a few other parameters. Based on these findings and out of all of the social determinants of health surrounding HIV infection, those of us on the leadership council chose five advocacy priority areas that we wanted to concentrate on.

   At the top of the list is, internalized stigma, because 60% of our respondents stated the they felt ashamed of their HIV status, 46% felt worthless, having low self-esteem. Our second advocacy priority is HIV related stigma in the Faith based community. The Faith Based Community can play a vital role in tackling HIV stigma by offering spiritual support. To that end the stigma index Detroit is collaborating with Rev. Michael Schuenemeyer of the United Church of Christ, to host a two day seminar, titled, Framework For Dialogue, where we will bring together members of the faith based community and people living with HIV, in a conversation about HIV stigma in the faith based community. Our third advocacy priority is HIV Criminalization. 88% of our respondents stated that they did not trust Michigan courts to give them a fair hearing if they are accused of not disclosing their HIV status to a partner. Our next advocacy priority is Youth Education and Advocacy. The population of Detroit is 80% black. The CDC has predicted that 1 out of 2 black MSM with be infected with HIV in their lifetime if things don’t change. Our last advocacy priority is Transgender Issues. Trans women have the highest rate of HIV infections in the country.

    We shared an overview of our findings in a series of, hour long, Stigma Index, Lunch and Learn power point presentations, at the four major ASOs in Metropolitan Detroit, at the John D. Dingell VA Medical Center, I am a US Navy veteran, and at the University of Michigan. In December 2015 I attended The National AIDS Conference in Atlanta where I co-facilitated a roundtable on GIPA and the Stigma Index. In February of 2016 I was invited to appear on a local TV program and given ten minutes to speak about the Stigma Index. And this Thursday I am invited to a meeting at the White House on HIV Stigma: Translating Research into Action, Reducing HIV Stigma to Optimize HIV Outcomes. Our mission for this grant period is to continue supporting people living with HIV in Metropolitan Detroit, by encouraging leadership training for people living with HIV and others in the community. Educating them about HIV stigma, and building networks and safe spaces and support systems that will self-empower them. I close my presentation with a call to action:

 Speak up, speak out, help fight HIV stigma.