Tag: relationships

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.”

New Year Ahead – what is in your heart?


A friend recently introduced me to a new way of thinking about New Year’s Eve, and all the “hype” leading up to a changing digit or two in the date…

That in which you are engaging or contemplating this evening will become your intentions for and in the New Year.

So, as I considered this evening’s activities, I created time and place for the following passions or gifts:

  • Baking  – which is really about sharing generously with others, showing hospitality, eating meals together, and building community
  • Photography  – which is really about telling stories, connecting with others through empathy and creativity, and building community 
  • Tech Geek (digital photos, website, social media, video remixing) – which is really about creating, using a tool to enhance but not dominate life, and having fun
  • Blogging –  which is really about telling stories, connecting with others through empathy and creativity, and building community 🙂

In that same time, he is doing the same for the following passions and gifts:

  • Acro-Yoga – which is really about building community, making healthy life choices and having fun
  • Body Work – which is really about building intimate community, being aware of one’s self in relation to others and to the universe, and having fun

And he will join me afterwards, where we will enjoy the following shared passion:

  • Being with Loved Ones (Family, Friends & Pets) – which is about finding shelter and being home, unconditional love…and warm hot cocoa!  Add your own thoughts…

 

Peace, love and light for you in 2015…

Yes, Virginia … There is a Santa Claus (and other traditions)


The letter to the editor of the New York Sun in 1897 is one of my favorite Christmas “stories.”  Several years ago, my then partner Jerry saw the letter/response from the editor reprinted for a Macy’s Christmas ad, and had it framed for me in a satin red mat/black frame.  It’s one of my many traditions for Christmas — taking down a piece of artwork that’s up for the rest of the year, replacing it with this frame.  The full text is available below (and the movie can be seen on Netflix!)

Yes, Virginia…there is a Santa Claus!.

Yes Virginia Memorabilia

“Yes Virginia…” Memorabilia I’ve Collected

I’ve been through a lot of change and loss since 2010, so it has taken a couple of years until I have really got back into the Christmas spirit.  Last year, I lost my mom to alcoholism/heart attack in January, and my grandmother (her mom) died later in October, one month shy of her 101st birthday.  But, I’m happy to report that this year is probably the best year so far: decorating the house, putting up lights inside and our along with a tree, etc.

There are three special items in my collection (in addition to the Yes, Virginia stuff) that remind me of my family.

  • One is a collection of homemade Christmas cards that my mom’s parents had printed each year from ~40’s to the ~60’s, which I had specially mounted several years ago, proudly displaying them as they should be.  They remind me of my mom and grandmother.  I love the different clothing styles, and fonts/expressions that mirror the changing times…
Vintage Christmas Cards - The Schneider Family (1940's to 1960's)
Vintage Christmas Cards
The Schneider Family (1940’s to 1960’s)

 

  • One is an original decanter and glass set for Creme de Menth that my grandmother Blanche gave me.  Very “kitsch” – something that nobody else in the family wanted, so she was ecstatic when her “gay grandson” was thrilled to give it a good home.

IMG_6244

Original Decanter/Glasses (Creme de Menthe)

 

  • Several collections of crèche’s (mangers) from my mom, which the three siblings carefully divided up between ourselves and her grandchildren last year.  They remind me of mom…

Creche (Manger Scene) from the Estate of C.S. Wyman Creche (Manger Scene) from the Estate of C.S. Wyman Creche (Manger Scene) from the Estate of C.S. Wyman

Creche (Manger Scene) from the Estate of C.S. Wyman

Crèche (Manger Scene) from the Estate of C.S. Wyman

Another proud “tradition” I’m a part of are the carillons at my “community center” / church, Broadway United Methodist Church.  We had a capital project last year to put them back in service, having rung in the past decades…but the old tape technology had fallen into disuse and failed to work.  A resident of Mapleton-Fall Creek, living two blocks from the church, it seemed fitting to give to our ambiance in memory of my grandmother with some of the money she left me in her will.

Whenever I hear the chimes, I think fondly of her and her matriarchal role in our family. To know the carillons are bringing others joy warms my heart. I love this neighborhood community and the traditions and memories it brings forward.

Some comments from neighbors (via nextdoor.com)

“We live right across the street from Broadway UMC and we LOVE hearing the bells! Thank you for all of your work to bring this small joy back to the neighborhood!”

” I enjoy hearing the beautiful bells. It’s nice to have them return to Broadway.  Whenever I hear the bells ring from the Broadway tower, I will always think of you and your Grandmother. Thank for ringing our bells!”

“I love the bells. I remember the first time I heard them play a song which was two christmas’s ago. I completely stopped what I was doing and listened. Not only did the bells tell me to slow down and just listen for once, they got me in the holiday spirit which is a feeling you can’t buy. We also brag to our guests, that visit our house, that we don’t need a wall clock because the bell tower keeps us up on the time!”

“I live on Broadway and I absolutely love hearing them chime. Thank you!”

“My family and I love hearing the bells. Thank you to you and your committee for making this a lovely part of our community!”

“I no longer live in MFC, however, my family lived in the community for 50 years. I am employed at Broadway UMC and I absolutely love hearing the chimes…so glad that they have been restored!”

One final tradition we grew up with: homemade pumpkin bread.  We couldn’t open our presents on Christmas morning until we had our slices of bread, which my mom had made from the pumpkins at Halloween.  So, I carry that tradition forward and always try to have pumpkin bread in and around the season, especially on Christmas morning.

Another tradition I reconnected with is our annual Christmas Store for the neighborhood…but I’ll save another blog post for that.  I’ll also write about “Christopher The Christmas Tree,” the creator of which (George Bowers) just passed away this month.  Finally, I’ll write about “Three King’s Day,” a tradition I learned about while living in Puerto Rico.

 

In closing, for many of us, the holidays can still bring up losses and changes we’re grieving. Just when we think we’ve moved past things, something comes up to remind us of the hole in our hearts…
I came across this poem that I thought I’d share:

“A Blessing for the Empty Place”

You sit in the empty place that is left, After the death, the arrangements, the service, The cards and calls and emails,
The departure of family,
The thank you’s and acknowledgements.
Left with the emptiness,
The space that can never be filled In quite the same way.
You see a shadow, hear a sound,
Taste a food she used to love,
Start to tell him something about your day, Smell a blanket or pillowcase,
And your eyes and heart are filled with tears.
The first week, the first month, the first birthday, The first holiday, the first anniversary, These bring you to the place of remembering, The place of exquisite, lonely sorrow.
Bless you and your memories.
Bless the tender heart that beats within you. Bless the empty space that can never be filled.
The shadows, the smells, the tastes, the thoughts, Transform their pain into blessings,
Signs that though you live in that desperately empty place, She walks beside you,
He laughs in the shelter of your heart.
That empty place That can never be filled In quite the same way Is filled
With love.

‘TheUnclutteredHeartbeth@bethrichardson.com‘

What are some of your favorite traditions or Christmas memories?
Please use comments to share with us…