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 (; 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 – 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

Personal Life Celebration Sample - Happy 50th Lisa!
Personal Life Celebration Sample –              Happy 50th Lisa!

Personal Life Celebration Sample - Baloo Life Collage
Personal Life Celebration Sample –                 Baloo Life Collage

Clean 2-8-14 #knowyourstatus REALLY?

20 years later…
What have we learned about science and hate?

Clean 2-8-14  #knowyourstatus

Want me to get scientific [on you]…and explain why having HIV is dirty?

I can fully explain it to you.  Chemistry and biology.

It’s a bacteria infection.  Which is not clean.

Your being mad at the world…is not gonna get rid of your HIV brother.  I promise that.

This is an online profile and part of a text conversation with a 21-year-old tonight in the early to mid 2010’s.

AIDS is God’s judgement on homosexuals.

This was from a phone conversation I had with my mother in the early 1990’s.  She had a master’s in microbiology.

I’m not sure which scares – or hurts – me the most.  Judgement and hate from my flesh and blood family, or judgement and hate from my family of choice.

At least my mother grew in her understanding and compassion over the years — along with the scientific understanding of this very manageable health condition.  When I eventually contracted the HIV virus in 2012, she no longer spoke in such an uneducated way.

I only wish this “SomeHotDude” from the millennial generation  learns some things about health, compassion and acceptance.

Anger, sadness and fear…oh my!

Am I mad “at the world?”  I’m mad at a choice I made to relapse in December 2011, which put me in a situation where I had unsafe sex in a careless way that showed little self-respect.  It’s a choice I made to use, and from there…my addiction wanted me dead.  So yes, I’m mad at myself and my addiction.

Am I mad and saddened and hurt by my dead grandfather, who 20+ years later I find out wrote me out of his will because I’m gay?  Yes, I’m mad at his narrow-minded bigotry that excluded me simply because of whom I love.

Am I mad at this cocky 21-year-old who verbalizes things I thought about people with HIV/AIDS for 20+ years, because of my own fear, prejudice and insecurity?  Yes, I’m mad and sad at seeing myself in him, mad at him for openly expressing his prejudice while I at least had the maturity along the way of keeping my fears and insecurities to myself.

Are the decisions or actions we’ve both made any different?  No.

Am I frustrated that our society continues to marginalize, label and push people who are different down into the gutter — whether it be based on race, ethnicity, sexual orientation, health condition, age or some other “class” we use to describe one another — rather than seeing one another as human beings?  Yes.

And let’s be clear – I’m part of that society, and have some of those same prejudices, so I hope this doesn’t come across as self-righteous.  I’m human, not perfect…just trying to learn and grow with what life experiences I have.

The question is: while we all may have these thoughts, do we let them influence our actions?  Or do we instead ignore the “pre-judement based on a stereotype, label or generalization” and choose acceptance, compassion, understanding?   Do we look past the societal labels, and seek to get to know the person in front of us?  In front of me…

Am I curious about that person, who they are and what they believe?   Do I think critically about the information I’m presented as I listen?  Do I show compassion, even in the face of fear, differences, insecurities?

It’s not always easy…believe me!  But that’s how I aspire to live, at the age of 45.  I only wish I knew at 21 what I now understand more fully…

Clean 2-8-14  #knowyourstatus

So yes, it scares and saddens me that this 21 year old is growing up comfortable about being gay, but judging people in our own community because he is afraid.

So my responses to his blindness were:

Clean 3-17-14, HIV+ March 2012

What does cleanliness have to do with status?  HIV status has nothing to do with being clean or dirty.

Do you like it when gay people are all labeled as perverts?  Then why would it be acceptable to label all HIV+ people as dirty [because people who are HIV- are instead clean]?

Perversion has nothing do with sexual orientation, just like cleanliness has nothing to do with viral status.

So yes, I’m clean and HIV+ — as if those two “labels” are really the antithesis of each other.  (I’ve been on medication since I was first diagnosed, and my viral load has been undetectable since January 2013)

One has to do with bathing habits, or language usage (for fuck’s sake…), or perhaps how tidy one keeps one’s house.  The other is a manageable health condition.  Two very different concepts.

This isn’t the 1980’s folks…get educated.  (Or for any millennials reading this, it’s not the 90’s. )

I hope this 21 year old never contracts the HIV virus and has to eat his own words…like I’ve had to re-evaluate my thoughts and beliefs…or like my mom had to re-evaluate her religion.