Tag: change

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.”

The Power Of A Question: Who Are The Healers In Your Community?


Some of my other entries have touched on the “Power of a Question.”  It can often completely change our thinking or the outcome of a situation because it invites new perspectives.

I have a friend who does this well.  Even when I imagine he has advice to offer, or experience to share – he will hold back, “play dumb” and probe with a series of questions. The beauty in this is it invites dialogue.

Another friend used to say, “I can choose to be right, or I can choose to be happy.  I choose to be happy.”  I’ve taken that a bit further with “I can choose to be right, or I can choose to connect.  I choose to connect.”  Again, by asking a question instead of giving advice, we’re more likely to build rapport and create dialogue, which is far more important to me now than being right.

One of the other places I’ve come across the Power of a Question is from my daily devotional, by Mark Nepo.  The readings introduced me to a series of questions Native America medicine men ask of the sick: When was the last time you sang? When was the last time you danced? When was the last time you told your story? These questions would be put to the sick and dying by the tribe’s medicine man. In my recovery journey, I’m learning it’s just as important to ask these questions of the living. I also used these three questions to celebrate my mom’s life journey last year, reflecting on her song, her dance, her story…

“The right question at the right time changes the way we look at things around us.”

This past Sunday, I heard a sermon by my pastor and friend Mike Mather that embodied this “Power of a question.”  It was truly inspired and moved me. Mike talked about a visit some folks took to meet with Dr. John Rich, recipient of a MacArthur Foundation Fellowship. As a primary care doctor at Boston Medical Center, Rich created the Young Men’s Health Clinic and initiated the Boston HealthCREW, a program to train inner city young men to become peer health educators who focus on the health of men and boys in their communities.  His recently published book about urban violence Wrong Place, Wrong Time: Trauma and Violence in the Lives of Young Black Men has drawn critical acclaim.

Mike shared in the sermon how two simple questions from Dr. John Rich profoundly affected the group, and fundamentally changed how Mike now sees the world. It’s also permeates the structure, mindset and “ministry” of our church. Dr. Rich asked the group:

“Who are the healers in your community?

He then asked them,

“How are you supporting those healers?”

At Broadway, we ask not about what someone’s needs are, but about someone’s gifts. Asking people what they are gifted at rather than what they lack changes the way we see the world. And while we are far from perfect at it, it really is a mindset that transcends a single “leader” and has become a way of life for many or most of us.

Others from outside of Broadway have confirmed this, which helps remind me why we do things the way we do.  It really does make a difference in the long run.  It can be a little messier, or shall I say less tidy and well defined.  It’s harder perhaps to measure or articulate through “program objectives” because the work or ministry doesn’t take place from the center, but is instead supported from the center.  The church’s role becomes one of making visible that which is already taking place – through the gifts, passions and efforts of our members, out in their neighborhoods, workplaces and communities.

The following clips capture some of what I’m talking about, so I will close with them.  You can also find the rest of Mike’s sermon podcast here: http://www.broadwayumc.info/audio/10-19-14_Sermon.mp3

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.”