Category: Gay Civil Rights

Thanks Ryan, Bill, Alice, Joe, Barack and others for “changing the odds” for people living with HIV/AIDS in Indiana


A friend of mine, Mike Mather (@rovlist) paraphrased a text by John McKnight (from “The Other Side” magazine) into “Five Rules to Protect Yourself from Being the Agent of the Devil in the Middle of Your Community.”

One of the phrases is: “ask whether we are changing the odds for everyone, or helping a few people beat the odds.”

Five Rules for Community
“Five Rules for Community” Greeting Cards – J. McKnight/M. Mather (commissioned work)

 

I was diagnosed with HIV in 2012.  I’ve written about my experiences in other posts here – I’m blessed in many ways: by the community of support in my family & friends; in the amazing care I receive from the Damien Center; in the care of my Higher Power throughout my early diagnosis and treatment; in being able to share with my mom days before she passed away that my viral load had quickly been lowered to undetectable…

Today, I want to shine a light on a few people who have changed the odds in Indiana for those of us needing care.  This is the month I get my twice-annual check-up, as well as my new insurance cards from the State.  So, it seems like a fitting time to celebrate these heroes…

 

Ryan White

When I was first diagnosed, my care co-ordinator shared that Indianapolis, Indiana are one of the best places to receive care because of our history with the disease in the “national spotlight” as well as behind the scenes… She specifically mentioned Ryan White

….an American teenager from Kokomo, Indiana, who became a national poster child for HIV/AIDS in the United States, after being expelled from middle school because of his infection. As a hemophiliac, he became infected with HIV from a contaminated blood treatment and, when diagnosed in December 1984, was given six months to live. Doctors said he posed no risk to other students, but AIDS was poorly understood at the time, and when White tried to return to school, many parents and teachers in Kokomo rallied against his attendance…A lengthy legal battle with the school system ensued, and media coverage of the case made White into a national celebrity and spokesman for AIDS research and public education.

[Along with others, Ryan helped to shift the] perception [of the disease by appearing] in the media to advocate for more AIDS research and public education to address the epidemic. The U.S. Congress passed a major piece of AIDS legislation, the Ryan White Care Act, shortly after White’s death. The Act has been reauthorized twice; Ryan White Programs are the largest provider of services for people living with HIV/AIDS in the United States.

Part of my health insurance coverage today is provided by the Ryan White Care Act; and the awareness (and acceptance) in the Hoosier State was dramatically changed by this brave young man.  So thank you, Ryan for being a “John McKnight Hero,” changing the odds for everyone…

 

Bill Brown

Another part of my health insurance coverage early on was known as ICHIA (Indiana Comprehensive Health Insurance Association).  This vital program “offers insurance for people with health conditions who are unable to buy private health insurance coverage and for people who are HIPAA eligible. “  Being HIPAA eligible in Indiana in 2012, I was “guaranteed the right to buy an individual insurance policy plan from ICHIA and are exempted from pre-existing condition exclusion periods.”

Through this program, people with HIV/AIDS are able to cover the cost of medication ($2500/ month, for the rest of my life…), as well as other comprehensive medical care (medical, dental, vision).  Why is this important: to keep us healthy (low to undetectable viral load and healthy immune systems), and reduce the spread of further infection through education and treatment. 

Healthy: “your CD4 count is in the normal range (500-1500).”  Undetectable:  “your HIV viral load is undetectable (depends on the test used, but today this means generally <20 copies of the HIV virus / mL of blood).

What does “healthy and undetectable” mean? This means your immune system has not sustained any significant damage yet and your HIV treatment has been effective in reducing your viral load. (for current information, refer to TheBody.com.  Read more here…)

I learned last year that a friend of mine (small world!), Bill Brown, was the Board Chair for ICHIA for many years.  So, Bill and others who fought to ensure this and similar insurance coverage in Indiana are my other “John McKnight Heroes,” changing the odds for everyone…

 

President Barack Obama

Although programs like Ryan White Assistance, ICHIA, ADAP and many other acronyms I don’t claim to fully understand are / have been important parts of my health insurance coverage (I trust my care coordinator and ask her what I need to do, or refer to TheBody.com…), with the passage of the Affordable Care Act, the landscape has changed.

IN: ICHIA program to end

…With the upcoming availability of health insurance coverage through Exchanges, the ICHIA (Indiana Comprehensive Health Insurance Association) program will be terminated on December 31, 2013.  The Legislature passed HB 1328, and it was signed into law by the Governor…

Although I get into heated debates with my dad about the effectiveness of President Obama, with this act and the ongoing intent of the State of Indiana (led by my two prior heroes!) – I am included in the National Health Plan.  My premiums via “the marketplace” of $400-500/month continue to be paid by the State of Indiana.  For this reason, in addition to Ryan and Bill, I consider President Obama to be a “John McKnight Hero,” changing the odds for everyone…”

 

Alice Langford

Another hero (and friend, and member of my church!) is Alice Langford.  A recent Indianapolis Star article does her story justice, so I’ll refer you to “A Place At the Table for those who have HIV/AIDS.”

Alice Langford -
Alice Langford greets dinner guests with a hug upon entering her home on dinner evenings. For the last twenty years on the first and third Friday of every month Alice Langford, age 82, has been hosting bimonthly dinners for people who have AIDS or are affected by someone who is HIV positive. (Photo: Frank Espich/The Star) 

Due to her own health, Alice’s home-cooked meal “legacy” came to an end.  We celebrated her years of service to the community at Broadway with a special blessing and recognition (listen to her story here…).  But for this reason (and her dancing at Greg’s / OP’s through the years,), Alice is another “John McKnight Hero,” changing the odds for everyone…”

 

Joseph Miller

In 2010, I had the fortune of working on a video documentary for the philanthropic work of the Joseph F. Miller Foundation.  Joe Miller had a major impact on the HIV/AIDS community in Indiana.

Joe was generous to a fault when it came to his money. His JF Miller Foundation gave to many charities to champion causes dedicated to AIDS prevention and education, homeless and underprivileged children, and social injustice. He was a founding member of the Indiana Stonewall Democrats, a board chair for Indiana Cares, the nation’s second oldest HIV/AIDS education and prevention organization…and a board member of the Indiana ACLU.

Joe Miller has been making meaningful contributions to dozens of groups since the 1970’s, and his 2005 gift to the Damien Center to underwrite the Joseph F. Miller Center for HIV Testing and Prevention, has played a powerful role in the fight against HIV and AIDS in the central Indiana community…

Unfortunately, shortly after the documentary he commissioned was completed, Joe took his own life.  I’ve written here before about the difference between suicide and depression – in the hopes of educating folks on mental health issues.  Like so many who suffer from some form of mental illness and choose to take their own lives, Joe was a hero who deserves to be remembered for the ways in which he changed the landscape for the HIV/AIDS community.  For that reason, he is one of my “John McKnight Heroes,” changing the odds for everyone…”

 

There are MANY others I could have mentioned…but I’ll stop here.  Feel free to share your own thoughts, heroes, etc.  And keep Mike and John’s thoughts in mind…

“ask whether we are changing the odds for everyone, or helping a few people beat the odds.”

AIDS or Alzheimer’s…remembrance with transparency


Celebrating a life as it should be…

This week, we lost a soul due to complications due to AIDS, as he was living with the HIV virus. He was in my men’s group where I receive care coordination for my own life care as someone living with the HIV virus. I only knew him from the group, but his passing touched me for many reasons. I’d like to share a little of his story to keep his memory alive.

We will call him Scott. The fact that I have to pick a false name “to protect his family” goes to show that even today, with all the progress we’ve made in the treatment of this nasty virus, there is still the need to protect people’s dignity because of the social stigma that is still out there in our society. His family chose to have contributions go to the Alzheimer’s Association, as opposed to where he received life care for this real disease. Sad, for me at least, because I really don’t think the Alzheimer’s Association did anything for Scott. Each week, he found support and camaraderie from a small circle of men who met in the basement of a non-profit organization, dedicated to those infected with HIV/AIDS.

So if you’re reading this and you’re willing, please make a contribution to your local HIV/AIDS organization in Scott’s memory.

And let me be clear – I don’t fault his family for making this choice. If we lived in a society where caring for someone with Alzheimer’s was equally respected as caring for someone with the HIV virus and/or complications from AIDS, then they could be transparent. But, we don’t…yet. So, they felt this was necessary.  I respect their decision.  I hate they had to make it…but I understand.

I’ll remember Scott for his love of music. For his love of food. For his sense of humor.

I’ll remember Scott because he was confined to a wheelchair, living in an assisted living home where we was often treated with disgust. Food would be taken from his fridge. Human excrement would be left in his bed sheets or on the floor, because the staff wasn’t willing to clean up after him. Granted, Scott was a cantankerous man who was probably difficult to live with. He sometimes made us uncomfortable in group – but he was human, alive and living with this painful, ugly disease. He felt trapped in the nursing home – a victim, perhaps by choice, but perhaps not. At least he had our support group, where he could vent and process and find support. How many people are out there who don’t have that?

I’m reminded of a song by Barbara McAfee, entitled “When I Die.” It’s given me much comfort in my living, and given me hope that I can die with grace and dignity, surrounded by friends and family.  The opening lines are:

“When I die, I know there’ll be singing
By my friends all gathered around.
As their sweet voices fade behind me,
I will join in the one great sound.
And I’ll stand on a sunset hillside
Just like I did in that dream
Join the multitude there that is singing
The song inside everything.
…
When I die I’ll fall into a hammock,
Woven of each song I’ve ever sung.
I have sent them a forward to catch me
On the day my life is done.”

When I die, I want this song played at my memorial service.

And, if I happen to die of complications due to AIDS, I want that listed in my obituary.  And I want donations made to the Damien Center, or IAIC, or Broadway UMC…or similar organizations, should I live somewhere other than Indianapolis.

I want people to know one can die with dignity from this disease, or from addiction, or from natural causes…or from a motorcycle accident.  I don’t know how I’ll go, but all of those are real possibilities, as I live life “in the grey” between the “!” and the “?”

The more we talk about it and tell our stories, the less shame and stigma there will be…

So Scott, I celebrate your life – your struggle – your smile.  May you find rest on a hammock that was prepared just for you…

Storytelling and Sleeping At Last…


Those that know me (1*), know I’m far from a “current events” guru. I usually hear trends and stories after the fact…  I just don’t watch much regular TV or listen to much radio to stay connected with “the real world.”  And most of it is depressing and repetitive (apart from PBS and some other shows – skipping the frigging commercials that are all about MARKETING and CONSUMERISM…

(*1) no, really know me…you’re few and far who get in to the second or third heart…THOSE are the ones I’m talking about!



Who remembers CBS Sunday Morning – the ORIGINAL (well for my story…the original!), with Charles Kuralt. Classic. Can’t replace or improve upon a great storyteller.  Still a great show (mainstream’s version of PBS news!), but it’s not Charles…  Reminds me…when Garrison leaves PHC (as if that were really possible…PHC without Garrison?  Never), we will lose another monumental talent on the public airways.  Just saying…

And the other living story teller is Mike Mather in my life (ok, there are some others…) – who I consider to be a close friend / BFF far more than I consider him “my pastor.” (*2)  He may be a “white, middle class, heterosexual Christian male” (got all those MAJORITY labels?!) but he is one of the most pigmented, poor, gay, agnostic, “spiritual realist” gender benders you will ever meet.  And he is in the (UMC – United Methodist Church) – but DO NOT HOLD THAT AGAINST HIM.  Please.

(*2) a label that brings a lot of baggage… at least for me, and probably most LGBT folks, or people who “live on the edges” of society.

So, back to me and my story.

Watched Grey’s Anatomy’s “summary” and closing season episodes from last year (*3) and discovered this nugget of creative splendor – “Sleeping At Last.”  Sure, it’s because they Cover for songs from MY generation…and having lived for a month with a 19 year old who epitomizes all that is good and bad about this “Generation Y W U T V” – it was nice to hear something I recognize!  (White rap all sounds the same…sorry!)

(*3) See how far behind I am!?  Not only do I not watch it regularly…but I get my updates from the networks’ prep for season starters…so I am WAY behind, ok



So, check them out.   They were “all that” last year when they appeared on G.A (*4).  And yet…their voices were there long before the “cultural blessing” they got from mainstream TV.

(*4) Like so many of us…we are here, living quiet lives, unnoticed by the mass media that envelopes us. Some of us are making a difference in another person’s life, just maybe…not for the external recognition or validation but simply because that’s who we are. Good neighbors. Good friends. But, that doesn’t sell advertising, “papers” or whatever “moves” today’s marketing engine. So we continue quietly, like a tree falling in the forest…


So anyway.  Here they are:

YouTube Playlist Coming Soon
(I’ll add it to my photography website when I do!)
My Favorite Songs
(*5) And I just learned that Bonnie Tyler is from WALES.  I lived 20 miles from Wales…  “This was the first record by a Welsh artist to top the US chart.  This entered the UK charts at #1, making Tyler the first female singer to do so.”