Electrifying Time

By

Graig Cote

In the late 1970’s and early 1980’s, Homosexuality was beginning to be accepted by main stream America, spoken in conversations, and a tolerant attitude was prevailing. All the while a menacing disease started to show itself. In the discos, the purple lesions became the new outfits of our dancing partners, not one of choice, but because of the effects of a disease that was ravishing our community. Our friends, who were healthy one week, were lying in the hospital beds dying, wasting away while we, the healthy, remained silent. Lies and half-truths became the norm, and fear became our constant companion. The, “what ifs,” became the “what was.” Before I even knew what really was happening, I too became one of the many infected by this disease.

June 15, 1986, I stopped at the Doctors office. He told me that at 25, I should not have shingles, a neurological disorder that affects the elderly, not of a 25 year old athletic male. He said, “You probably have HIV. We will give you the test.”

Fueled by uncertainty, misunderstanding, fear, stigma and moral judgments, we allowed the discrimination to create a blanket of oppression. I, like many others, hid the disease like a secret cloak that would and in some instances destroy lives. We watched as our friends dwindled away allowing them the lies that they chose to tell, never challenging or looking for the truth, fearful that we would be next. On two different occasions I stood quiet as another one of my friends discussed their disease, while knowing I too was infected.

            So began the journey of loss and sadness, fueled by uncertainty and dispair. Not facing the truth, I hid my head in the sand, and ran out of state, only to come back to a community ravished by a disease, and wondering what had happened to everyone and where would I fit in. I feared for my community which seemed a skeleton of what I remembered before I left. I stood empty and alone with my community and its loss.

I no longer had any one to say “remember when…” All my friends who had shared in the process of coming out, and growing up, were gone. I lay awake alone because all the people that I wanted around my heart were gone. They are forever sketched in my mind on a beautiful canvas of tranquility, and the place they have in my heart is just a safe memory like a trophy on a shelf. While others are memorialized on a panel that sits in a storage unit, too big to be shared in its entirety with the world again; they, like my “remember when’s,” are collecting dust and are a symbol of what and whom I have endure. But they as people, as a tangible realness are gone.

A new Community developed out of need, like a club, with the only requirement being HIV positive. The Ohio State University had the AIDS Clinical Trial Group; a research facility that also provided blood work which would remain off ones medical record, like a secret journal of an individual’s progression toward death. Grass root organizations started to form, The Columbus AIDS Taskforce, The Ohio AIDS Coalition and others. The infighting within the organizations, and the need for services created a passionate and sometimes volatile situation. The community was divided and conflicts were played out in meetings and personal agendas.

Unlike today, with medications and treatments that attack the virus and its replication cycle, during the early days of the epidemic, medications and treatment were more concerned with keeping an individual healthy. I have evolved like the virus, the journey similar, no longer waiting for answers, we seek out new ideas, creating a stronger foundation and platform. I was on highly active anti-retro-viral therapy. Taking AZT seven a day, getting nauseous just in time to feel better and take another pill, sneaking my medications under the table. I participated in my first healing weekend, and found the support, a new community of individuals that wanted to live with the disease, not die from it. I became a public speaker receiving Speaker of the Year. I continue to guest lecture for Schools and Universities creating a bigger community through education. I speak openly and honestly, no longer hiding behind the cloak of stigma, fear, and discrimination.

            When I am asked about my community, like the treatment of HIV, it is longer only dealing with those who are HIV positive. My community is everyone either infected with or affected by HIV and AIDS. Today we have stepped outside the box, and are treating individuals who are HIV negative, with PrEP to ensure that they do not become infected. It is through open dialogue without embarrassment or contempt that we can create a level playing field.

Under the blanket of oppression, stigma, and discrimination no longer will we lay. We have created a new community of unity and strength, no longer defined by a disease that held a moral judgment. Today we are a community united in the attempt to eradicate this disease. With the tides turning and equality spoken on the tongues that once only whispered of hope, we have come together and have a place at the table. We as a community have asked and fought for a place of equality and acceptance. We are vocal in our pursuit fueled by commitment and passion. Covered with the memories, blood, and sadness of those who came before us, who cannot speak, we are the voice of those who have died.

We as the HIV community must continue to remain vigilant in the fight for the end of HIV infection. With no apologies, fear or judgment we are a part of the human spirit. We as HIV positive individuals should stand firm and create a world without HIV and AIDS. We are a new community standing at the front of the parade of life, laughing, caring and sharing with no apologies, we are HIV positive.

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Organization Tips

Here are some tips on getting organized as given by guest speaker, Danny Spears.

Danny asks, "Why be organized?" He says tells us simply that it saves us time, helps us accomplish more, and others like it when we are ourselves organized.

He tells us How to Be Organized:

For Doctors' Appointments: Bring insurance information, write questions down, list your Refills as needed, list tests that may be needed, and summarize your last visit. If you keep them, have your last notes to refer to and clarify any questions not answered.

For OHDAP Renewal: Bring insurance information, copies of bills, checking/savings information, list of any and all questions about the program and how it can help. Don't wait until the last moment to ask for help---Funds take time to get approved to be used for client assisntance. Before your visit, download the needed forms from the website and prefill out as much information as possible before seeing the case manager. Make copies of needed items, such as your photo I.D., insurance cards, any award letters from Social Security, etc. KEEP YOUR ORIGINALS. Sign and date forms in front of the Case Manager.

For a Monthly Calender: Keep on top of medical appointment dates, bills, tests, medication refills, and any other important dates or events that you need to keep track of.

Carry/Store Your Information in a Safe and Secure Way:

Keep your information in a place you know where it is at all times. You don't want to lose the information, and you don't want anyone else having access to it.

Categorize your information and keep similar papers in the same place and separate from everyday papers.

Put your information in something that closes tightly and completely, zipping closed. Examples are book bags, backpacks, or satchels.

Put all papers and paperwork: prescriptions, copies of reports and lab orders, etc. that you receive from your Doctor and Case Manager.

Important Ryan White Part B Question & Answer

Katherine (Kate) Shumate, MPH, HIV Care Services Section, Ryan White Part B Administrator, Ohio Department of Health, Will be available to discuss the state's Ryan White Part B Program on Tuesday, April 7th, 2015 at Ritchie's Marketplace Restaurant in Piketon, Ohio from 11am til 1pm.

ALL CLIENTS ARE HIGHLY ENCOURAGED TO ATTEND THIS IMPORTANT Q&A. This can be a venue to discuss your questions and concerns and help contribute to program improvement.

Spring Benefit Show

Support the Task Force by attending the first of our Bi-Annual Cabaret-Style Benefit Shows, May 2nd, 2015, held at Scioto Township Hall, 164 S Watt St, Chillicothe, OH. Doors open at 7; Show starts at 8. $5 Cover at the door. Also be sure to bring NON-PERISHABLE FOOD ITEMS AND HYGIENE PRODUCTS to benefit our partner, Brian's Bounty. ALL PROCEEDS BENEFIT HIV/AIDS AWARENESS, EDUCATION, AND ASSISTANCE THROUGHOUT SOUTHEASTERN OHIO.

Health Expo

Visit the Task Force as we participate in the 2015 Health, Wellness, and Fitness Expo in the Shoemaker Center, Ohio Univervsity's Chillicothe campus from 9am til 2pm.