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Every Survivor Counts

June 8, 2015

National HIV/AIDS Long Term Survivors Awareness Day logo

I am grateful for this National HIV/AIDS Long Term Survivors Awareness Day! It has given me time to reflect on my journey.

Before I share my thoughts, I know some folks who are 30 years and over, living with this disease. I'd like to pay homage to those who came before us and paved the way ... painfully and afraid and filled with shame (my husband, Warren, especially). I'd like to pay homage to those who came before us and paved the way: painfully and afraid and filled with the fire of "Acting Up." This disease was relentless in the early days, is relentless in other parts of the world, and silently relentless in another way in these last days. I will return to this in a few. (I say last days, in the hopes of a cure "coming down the pike" -- inside pun).

I have been living with HIV for over 26 years, contracted it in the streets during my homeless days. It has been a long journey; a tiring journey, a challenging journey and believe it or not, these days a joyful journey -- speckled with the ups and downs of aging and managing other illnesses as well. It has been a journey of overcoming childhood trauma and PTSD, drugs and alcohol and learning to get out of my own way. It has been a "special" journey beginning with a diagnosis and starting with AZT, that monster of a drug. It has been a journey filled with experimental trials, becoming friends first with my body, talking to the blood and veins and arteries and organs ... "now, we are getting ready to try out a new medication, don't freak out on me, body" ... and swallowing whatever medication was put in front of me, until it was FDA approved.

It was a journey of watching my CD4 count and praying that it didn't fall another 50, which would've put me in the "full blown" category. And then came the ARV's ... the drug cocktails! Thanks be to God! They saved my life! And Ryan White, and ADAP, and all the other programs that helped finance my visits and medications until my benefits kicked in. Whew ... you have no idea.

It was a journey of understanding what stigma was. That took a little longer. I had to understand that the first stigma I had to get over was the one I put on myself: that I was dirty, contaminated, worthless, nasty, unlovable and untouchable. I had to get rid of those voices in my head ... the ones that were feeding me negative adjectives about myself. I wasn't too concerned with what the world was saying. I was telling myself enough.


Not going to go into the life history, but will fast forward to God. Then there was God. What did God have to say about this to me? How did I feel about God? Truth be told, listening to the stuff I grew up with, or rather watching how judgmental some church folks were toward folks who didn't have HIV, but were living "sinful" lives and made to feel ashamed and walking into church feeling "less than," was enough to keep me away from church, and then I met Heidi and Transfiguration Lutheran Church. If there was any judgment in that place, I didn't feel it. I was able to "take my coat off and sit a spell." I was able to get involved and become a part of. I was fed portions of humanity in that place, stories about miracles and healing, and fed with bread and wine. My Creator loved/loves me no matter what.

It wasn't until I ventured out into the world that I experienced stigma.

Sadly enough, I experienced stigma in the church. In the candidacy committee, where I was told they were concerned that I might develop AIDS dementia. All of my other issues, I am sure played a part: addiction, sexual abuse, homelessness. I will admit I probably did need some therapy for those issues ... but AIDS dementia never crossed my mind. I was turned down, and had to reapply the following year, when I had a little more "substance" and stronger foundation under my belt.

In seminary, once I disclosed my status, folks worried about eating with the same utensils I did (all of this under the guise of quiet discussions of which I was never privy to -- one of my classmates informed me).

When my husband died, I swore, I would do everything he didn't do ... beginning with talking. An activist was born.

The church seems to be my niche when it comes to HIV. Identifying the church's treatment of those with HIV seems to be my "thorn in my side." The church and it's ministry of caring has not been that caring towards me. Let me clarify: it doesn't seem to be that caring towards me, because no one actually seems to care about my health or my well-being.

Why? I don't believe it has to do with malice, or neglect.

It is probably because I am a long term survivor! I have been undetectable for years, and on the outside, I appear to be the picture of health! Which really could be further from the truth. I AM relatively healthy, but I do have other medical issues (as do other people -- but I don't see a social statement for "Diabetes and the Church's Ministry of Caring") I do see that document: "AIDS and the Church's Ministry of Caring." It seems to read for "those affected" sitting in the pews or outside the perimeter of the congregations, in other parts of the world, or in other communities ... you know "all those people with AIDS." Don't see anything about pastors in there.

Well, I and hundreds of thousands others do not have AIDS (which is a dated term). We are long time survivors of HIV.

And as the founders of this day say on their website: "... many long-term survivors feel invisible and forgotten. Now aging with HIV many survivors are isolated and are coping with psychosocial effects long-term survival including depression, hopelessness, and AIDS survivor syndrome (ASS). Now they are also dealing with poverty, ageism and a lack of meaning and purpose because they had the audacity to survive."

It is really a conundrum. I wouldn't particularly put myself in the category of feeling invisible and forgotten ... because I refuse to let myself be that. I frequently speak out about things I feel are wrong when it comes to HIV and the church. Not only in my church body, but in any church body that stigmatizes folks living with HIV, for whatever reason (mostly sexual -- but we won't go into that here).

Long term survivors feel forgotten and invisible, because of our outward appearance ... because of the great strides they have made in medicine. Inside our organs are taking a beating, if we are not careful. We have depression, and anxiety. And yet, no one seems to care. I don't know about anyone else, but no one ever calls me to see how I am doing? Maybe one or two. And that makes me sad. Mind you, people don't have a problem calling on me, to refer me to someone who has just been diagnosed ... or even in the instance of a leader of the church, who has a brother who was practically at deaths door, had no problem calling on me for that.

But me? But us long term survivors? Nahhhhh

People think, for the most part, we have it all under control. It is also the risk you take of becoming the "poster pastor for HIV."

One last thing: If, as the document "AIDS and the Church's Ministry of Caring" is to be held up as a social statement, then we must act accordingly. If, as it says that "AIDS, often with an intensity greater than many diseases, calls us to remember our common humanity," then we must act accordingly.

Or, because the document is so dated, perhaps it needs to be revisited.

I am grateful for June 5th and this 2d annual National HIV/AIDS Long Term Survivors Awareness Day. Grateful because I am grateful to still be here and to be acknowledged, albeit via my facebook friends, as opposed to my spiritual colleagues. Grateful to be affirmed with my brothers and sisters of the "Long Term Society" who understand, that all is not peaches and cream ... and yet, we ARE grateful, because the alternative is death.

But we must remember that this disease while labeled as "chronic" and "manageable" is still relentless. Still out there claiming lives and people are slow to remember the beginning of the epidemic and are not taking advantage of the many resources available to them.

Many people are not getting tested. Many young folks think, "Oh I'll take a pill and be fine." Society (I believe) has gotten lackadaisical as far as this disease is concerned. People trust each others words, in the heat of the moment: "Yeah, baby, I'm negative" ... and finding out later that they have contracted the disease, and then want to throw the other person in jail. People are not taking responsibility/and being accountable for their own bodies ... and the list goes on and on.

I'm an activist, and so I say to you, thank you for having this day. Thank you for acknowledging us.

The best way to thank us is to get tested and stay on top of your game. The best way to thank us is not to become like us. The best way to thank us is to check in periodically, no matter how "great" we seem to be doing.

It's lonely being a survivor ... lonelier still keeping quiet. And so, I revel in the support and fellowship of my other HIV'ers and keep running my mouth.

The hashtag for this day is: #EverySurvivorCounts, and is a reminder to survivors that they matter and they are important. They survived the darkest days of the AIDS epidemic with courage and compassion and as individuals and a community, exhibited strength and resilience.

(Well, I didn't survive the "darkest" days ... but I remember them, before it became my turn -- mine were dark enough).

Live Long and Survive

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This article was provided by TheBody.
See Also
More HIV Activist Profiles and Personal Accounts

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