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…

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I see life as full of possibilities and the world full of beautiful people possessing unique and often untapped talents. I’m a learner and connector, seeking ways to leverage the abundance in this world through strong community.

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