Tag: hope

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

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

Dead Poets Remember and Inspire


The movie Dead Poet’s Society came out during the summer between my junior and senior years at University of Michigan.  Formative years for me and for the young men in the movie. Impressionable – oh so impressionable.  1989.

 

And for that reason alone, has always been a favorite of mine…if not all time favorite.  And, I found myself watching it again recently, of course…

 

I remember connecting with Robert Sean Leonard’s character for many reasons.  For my struggles with homosexuality within The Word of God Community and UCO; for my perceptions of my father, so desperately wanting his approval and acceptance (when ironically it was always there, just not as vocal then as I wanted…); for my past years as a thespian, wondering what am I doing here as an engineer?  Oh so many connections. And for the struggles with rejection, depression and thoughts of suicide. These were the best of times, and the worst of times… 1989.

 

Then, full circle, Robin William’s untimely death due to his own depression comes at a juncture in my life where I’ve lost some focus and direction.  I’ve decided to close the Candlestick House chapter for now at least, and that has created a vacuum.  It’s been a tough month…

 

I’ve also had to face the grim realities of my feeble attempts to find and live in community, a concept so foreign and allusive to me.  (Thank for rubbing my face in that F.  Got the message…your ego landed that one, sans compassion or empathy.  But, I needed to hear it, so…I accept the gift in its brown wrapping!)

 

I run because it’s what I do best, and yet I’m running from the very fabric I so desperately want to feel covering and connecting me.

 

I want to turn the concept of “community” into a workshop or project, when in reality I simply need to focus on living it.  Each day. Simply.  Like a garden.

 

Very hard for me to fathom after 45 years of life patterns, social skills and addiction.

 

And I also find myself facing an almost insurmountable collection of affairs and boxes from my own down sizing in 2011, as well as the belongings from my mother’s estate which were set aside and stored for the transitional living house that never materialized.  And amidst those boxes, a firestorm of chaos left by a “monkey” I let into my circus, who robbed me and let my home become the pigpen of a somewhat demented soul while I was on vacation.

 

“Not my monkeys, not my circus” anymore…

 

And I’m not a victim in any of this.  These are all the result of choices I’ve made, situations I’ve put myself into… Being able to own a voice is so foreign to me, having let others be my voice or chart my path.  That’s one thing that Robin William’s character was clear on – carpė diem, but with it comes the responsibility of facing consequences and owning our decisions, even if it means facing others’ opposition or challenges, as I have, learning to find my stride…

 

So yes, August 2014 has been a tough month on many levels, only to live through Robin’s suicide as well.  (No disrespect to his family…)

 

His death took me back to a time when I was much younger, yet still struggling to find my own voice – and also reinforced this current dark chapter, where I struggle to find again a foundation, a stride, a verse to contribute.  Community – ‘a sense of belonging.’ What is that? So many changes.  So many ebbs and flows.  Some friendships morph.  Some relations come and go.  Some leave me wondering if I’ll ever be able to replace this loneliness with the comfort and daily presence of another “S.O.” in my life.

 

Life I guess.  And I still don’t always know how to live it on life’s terms…

 

Lines from a song I came across stand out for me:
“Sometimes I think I’m better off to turn out the lights and close up shop. And give up the longing, believing in belonging, just hold down my head and take the loss.” (from Learn My Lessons, Daughtry)

 

And don’t worry.  I’m not going to follow in Robin’s footsteps (just for today…).  It’s just where I’ve been and where I am. I needed to walk this path as I find my stride.

 

Learning another set of lessons from life itself.  Finding my voice.

 

What is going to be my verse?  (Thanks Apple! 🙂
On a more positive note, I came across this tribute to Robin.  Powerful.

 

 

And I found a quote from his son:
“I lost my father and a best friend and the world got a little grayer,” said Zak Williams. “I will carry his heart with me every day. I would ask those that loved him to remember him by being as gentle, kind and generous as he would be. Seek to bring joy to the world as he sought.”

 

And I discovered an amazing and emotive article that speaks to the reality of the situation…as another author puts it, “he didn’t die from apparent suicide. He died from depression.” The one author gives a voice to depression – the ‘D’ I have known, the ‘D’ Robin knew, and the ‘D’ I will inevitably face again.

 

Which comes first the chicken or the egg?  The using or the depression. (my story…now some from hers…)

 

But as [the doctor] went down a list of symptoms, they were all there — loss of appetite, trouble sleeping, waves of irrational anxiety, crying for no reason, loss of interest in work and hobbies, isolation and seclusion. I had nearly every one of them.

 

Still, I refused to let myself completely off the hook, and as I left her office, I set forth on a path of self-discovery to identify how my actions might’ve contributed to how I felt — a path that quickly brought up the ever-confusing chicken and egg game.

 

Did I isolate myself from my friends because I was depressed? Or did I become depressed because I isolated myself from my friends?

 

I was more hesitant than usual to keep what was going on to myself, telling only my family and those closest to me at the time what the doctor had said. Soon it became clear that I needed the support of more than a select few if I was going to get through this. Plus, it’s not like me not to share what’s going on in my life. And isolating myself, I suspected, was partly to blame for being in this situation in the first place. So, at the inappropriate places and the most inopportune times I could find, I began dropping the “D-bomb.”

 

And then as always, this glimmer of hope – this phrase that makes it all worth living through because of the truth that emerges:

 

“Everything is OK.
Maybe not today, but eventually.”

 

She framed it and hung it near her bed, where she sees it every day.  As will I.

 

Thank you for walking this journey with me. It’s for me of course. If you found something helpful here, thank our universe.  Pretty cool…

 

Some wisdom from the movie script…
“No matter what anybody tells you, words and ideas can change the world.”

 

“Boys, you must strive to find your own voice. Because the longer you wait to begin, the less likely you are to find it at all. Thoreau said, “Most men lead lives of quiet desperation.” Don’t be resigned to that. Break out!”

 

“Now we all have a great need for acceptance, but you must trust that your beliefs are unique, your own, even though others may think them odd or unpopular, even though the herd may go, [imitating a goat] “that’s baaaaad.”

 

“Thank you, boys. Thank you.”

 

And on an unrelated but upbeat note, I’ll close with Mr. Rogers:
And because it’s such an amazing, creative piece of work: