life happens – Page 6 – The Magical Storybook of Professor Peacock

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” 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.”

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…

The blabbering of an ex-Facebooker, thirsty for e-contact with the e-world…

I realize I haven’t blogged for about two weeks. And since I had earlier taken my Facebook page down due to some events and emotions, I really don’t have much “e-” contact, outside of the gay dating and chat sites. Not necessarily the best company to be keeping. And with my physical connections and friendships being closely cherished but not large in numbers…it can get a little spooky inside this carved pumpkin. Although I have been writing a lot offline, I think there are some nuggets worth sharing. Maybe not. So, perhaps a change coming… 1. get out again and enjoy nature on earth, and other human beings and 2. blog more consistently, along with photography and digital creations, as that outlet helps me work through life.

So quick update on last two weeks or so: adjusting to no online presence (Facebook) – really feeling out of touch, not belonging. Nothing has actually changed regarding the “actual” degrees of physical distance or emotional connection…but all of a sudden, the mind and heart starve for something that was there, in fact, just perhaps not being able to fulfill its promise….nonetheless, has value/role to play in our sense of community, of belonging. (Note: I do not have any financial or legal connections with Facebook…or whatever legal jargon should go hear to protect my sponsors. lol)

During those two weeks: listened as my nephew went off to college as a new dorm-bound freshman; bailed on an important ride/event; made decision to first close CHEC and then overrode with decision to keep pursuing some community work close to my heart; met with my care coordinator for our annual recertification (let’s analyze my navel and all actions surrounding it with 20 questions you should always be aware of, but only really consider during one of these conjugal visits…); found out our neighborhood block may be zoned and rebuilt, leaving me homeless at some point (really…not trying to make light of anyone’s plight – just my fear being reckless – I have and always will be taken care of; thought seriously about buying a home, whether for me or CHEC or both; decided I want to learn video remixing as a way to expand my creative outlet; lived through an Apple announcement and launch, setting goals to wait for both iPhone 6 and iWatch (less impulsive!); made huge progress on the basement cleanup program (hah!); interviewed for a part-time position; was reminded of a good friend, John Pickel (currently residing in WS, NC – looking after Maya’s spirit I’m sure with a little scotch and good cooking)…our antics together over the years, and his creative genius and humility; reconnected and re-disconnected with some souls, learning each time what we each bring and need in relation; decided on an online photo fulfillment service to let me take my photography and videography to the next level; learned a whole new vocal around acrobatics, including thai massage; experienced tactile energy and spirituality of being on a whole new level; lived through a milestone birthday for my sister, and what would have been my mom’s 73rd birthday; silently launched my new site (www.ctoddcreations.com); had friends hunt me down and go to lunch, and/or leave me with enough compassion and riddles to satisfy my emotional quotient and need for spiritual interaction at a deep soul level; lived through my dad’s loss of his “child” – a golden retriever…to an aggressive cancer that gave my dad the best last few weeks, but finally came to an end…and I feel is aloneness and yet know he is in a good place, grieving a valid loss in a healthy way; decided to go visit said dad before Thanksgiving just because… and maybe get to see my new nephew!…; dropped my motorcycle on me, doing minor damage to owner and bike – shoulder is biggest pain now, may need to go to clinic; took in another stray… and that’s about it. I think. Not much going on…

“The boy” (stray) has been awesome – having a non-sexual male friendship and interaction; his integrity has also rekindled my faith in other humans. But having another person here in my space is also bending my rule about monkeys in my circus, my sacred space. I thought I had learned that lesson, but not as fully as I needed… This round, I realized that I’m putting them in a lose-lose situation living here with no financial means and no formal contract/commitment (e.g. CHEC, but not at home!)- and that’s not healthy or what I want. So it’s really got to be a hard boundary, particularly as I pursue the shaping of CHEC’s mission. End of story.

Nonetheless, there is something healthy about interacting with another human being. Dogs are great companions, but not the replacement for human touch and intuition.

So there’s not much to add here other than:

1. Checkout www.CToddCreations.com – give me feedback on cost/quality, but I’m really excited about the product offerings!

2. Happy 50th Birthday to my sister. And light and love to my dad as he lives through the loss of his companion, Baloo.

3. I put together a portfolio of my videography creations – check them out on my homepage, but for now let me share the clip from this one event that really moved me… I’ll try to convey some of the emotions in the experience through visual arts and storytelling. I also leave two collages, celebrating Lisa’s 50 years of life and Baloo’s life as dad’s companion, and an amazing cover of an old time favorite from my generation (gosh, 40 IS the new 30!)

The Reason We Are Here: Waddie Welcome at Broadway UMC from CToddCreations on Vimeo.

Link to video “The Reason We Are Here: Waddie Welcome at Broadway UMC

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