AIDS

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bradly1101

Diamond Member
May 5, 2013
4,689
294
126
www.bradlygsmith.org
Autumn

It’s getting late,
my body’s old.
To my fate,
extremities cold.

I shall not fear,
extend my doom.
Quieter here,
peace in bloom.

Ache away oh muscles worn,
with some regrets
and forlorn.
Left glasses here
I could have sworn.
 

Perknose

Forum Director & Omnipotent Overlord
Forum Director
Oct 9, 1999
46,262
9,331
146
Thanks for your luminous sharing, Bradly. My good friend Ray died on the operating table while getting a liver transplant from having contracted Hep C from sharing needles back in his stupidly impetuous youth. It finally caught up with him decades later. He'd been completely sober for more than 20 years.

He was a wildly inventive artist and a passing fine poet as well. Though I knew other artists who were arguably better technically, it was Ray I commissioned to paint my wife Jessie after her death. I knew he had the best chance to capture her soul. And he did.

My friend Marilyn is funding a book of his artwork that will be sold as a fund raiser for our church. This is the poem I wrote for his memorial service, now mildly re-fashioned to serve as its introduction:


MY BROTHER RAY

Many of us reach for the stars
And end up with only aching arms
But Ray reached all the way
And had the fairy dust on his fingers to prove it.

Ray was magical, irascible, stubborn, loving and wise.
He was the living breathing embodiment
Of Pebble’s noblest hippie highs.
It’s starry-eyed sparkling core.

He was all this and more.
My brother Ray.

My brother Ray
Knew Shakespeare in and out
Was a walking art history compendium
And an alchemist with canvas and hue.

So with this book we bring you his vision
And give this brilliant loving man his due

Our brother Ray.
 
Nov 8, 2012
20,828
4,777
146
But srsly, condolences for you, and I wish you the best of luck mate.

As someone that has leeched off our healthcare insurance system in the form of... epilepsy for myself, being a fattie (and now no longer), and now a premature kiddo... I know what stress is like. Maybe not to the degree of yours - but certainly I can relate. Shit sucks, yo. I hope the best for you <3.
 
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skyking

Lifer
Nov 21, 2001
22,215
5,075
146
I read your first post, but really danced across it, like handling a hot pan without a glove. I went back and soaked it all in, Bradly.
I am sorry for your loss and pain, but thankful you chose to share with us. High 5 from a fellow non drinker !
 
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SlowSpyder

Lifer
Jan 12, 2005
17,305
1,001
126
Sorry to hear OP. Just remember, none of us get out of life alive, and I'm sure you appreciate the time and experience you've had given your story. Best wishes for the future.
 
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monkeydelmagico

Diamond Member
Nov 16, 2011
3,961
145
106
Yeah, I could tell you some healthcare nightmares.

As a healthcare professional I would like to offer an apology on behalf of the medical community. I look from the inside of this system out. Having people remind us of what it looks like from the outside is necessary. I try my best every working day to make a positive impact. Some days are better than others.

I admire your courage and tenacity. Your ability to carry on in the face of adversity is inspirational. Keep telling your story. As you can see from this thread people listen.

Primum non nocere (first, do no harm)

Sincerely,

MdM
 

bradly1101

Diamond Member
May 5, 2013
4,689
294
126
www.bradlygsmith.org
My sister who is an outreach for aids patient told me a lot of stories about them. This was around 1994. Some patient begged her to let them go. She would see them i the morning and the patient would say goodbye and told them not to come back the following day. Most of them were vibrant, happy at one time but when the disease hit there is so much worries.
It's easy when you're suffering to want a final exit, a way to make it all end. And if you're "in the community" and saw all the other suffering, your dear friends (who had been on the dance floor with you stepping out to Take a Chance On Me) falling to the disease all around you, it's hard not to see that they got to leave the horror and the fear behind (not to get philosophical, and they understandably couldn't seem to take it anymore).

I can't tell you how many times I felt that way, especially during medical interventions, once waking up from gut surgery to this giant tube down my throat, intubated because I had gone into respiratory distress during the surgery. I said to myself, "You idiots! Why did you save me?" My family was there looking down at the youngest son with smiling, compassionate fear, all sorts of beeping machines around making sure I was within tolerable levels of vital signs. I didn't want the life-saving. My family's sweetly veiled fear was another reason to hate living, they deserved to not live in fright. This was 1995.

I was lucky; my gay best friend (an absolutely gregarious, fun, magnetic guy who was an amazing artist who taught me more about seeing art than I ever could imagine. He introduced me to The Museum of Neon Art in L.A. when it was in the manufacturing district, wow. He loved to backpack. We hiked up to Long Lake on the eastern side of the Sierra where my family would hike so many times when I was a child. Although never romantically, we "got" each other like there was some kind of heightened connection), Peter, died around '90. His family had basically abandoned him after they found out he had AIDS. By that time I was living up north with my partner, focusing on my career, when I heard of his death. I immediately knew I had to be there for his memorial service, then I found out his parents weren't going to let his gay friends attend. I love you Peter!

At one time when I was living with my partner down here in a big house with roommates, I came home early from work with two new boxed bicycles to assemble, it was just before Christmas and I wanted to surprise him. Our roommate (also HIV infected) was despondent after a breakup. As I went to the garage to get the tools, I heard a car running in it. I went to open the door but it was blocked by something inside. I instantly knew that our depressed roommate was inside trying to kill himself. For a split second I realized that he had every right to do that. But instead of letting it happen I broke the door down, somehow busting through the panels (I still can't explain how).

There he was, crouched down near the exhaust pipe of his little, cute Tercel with a scarf trying to aim the fumes at his face. He looked up at me with the saddest eyes I have ever seen. I picked him up, and got us both out of that exhaust-filled garage. He couldn't hold himself up, but he was short and slender enough for me to carry. I called 911, and he obviously needed medical intervention. The cops arrived right after the ambulance. He refused the intent to get him to the hospital. The paramedic said, "You can come with us or go with them (pointing at the cop who had sympathetic eyes)." He went to the hospital and "broke out" on his way to many more years of life. We lost contact, but I heard through a mutual friend that he died of the disease up north somewhere. I had to hope that he was happy to be saved, as he said.

A good friend and vocal student of my mom's went out the day after his HIV test, bought his first gun, and blew his brains out with the first bullet ('88?).

You see a lot. And it can school you or it can depress you. I love(d) all the guys I've seen fall. I imagine them up there with my mom and Louise Hay and all the rest, carrying on, free from burden. They know the love that they shared and the love they got back. All that really matters.

I assert that you and your sister are angels on earth, her work and your sharing it. You gave me the gift of the therapy of writing and its way of lightening the load.

Angels in America is amazing (HBO), they're all around.

As I do, some songs. As all gay artists of the day were, these guys were affected by watching the unjust epidemic unfold.

You gotta love Dusty Springfield


You can break the chains of love, but you can't break love.

 

bradly1101

Diamond Member
May 5, 2013
4,689
294
126
www.bradlygsmith.org
For all the fathers out there.

This is just something I wrote to Eljon's sister (whose dad died yesterday on Eljon's birthday. Chatlotte was his wife/their mom-above). I got the parting curtains thought from Geekbabe and her incredible post about her son. Thanks Babe!

Mr. Bakken
I didn’t know you well, maybe I did through your son’s stories
The dance hall at the Santa Monica Pier
Charlotte
You taught the path before your children
the path before your students
Skills that last lifetimes
I know the curtains that come with age are opaque
but I saw them part when I told you of the greatness I saw in your sons
Your humble pride, the men you made
A family filled with love
You did that
 

nOOky

Platinum Member
Aug 17, 2004
2,892
1,910
136
I don't normally venture out of the tech forums, but I happened upon your story, and I just wanted to chime in with wishes of good health and sorry about your loss.
 
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bradly1101

Diamond Member
May 5, 2013
4,689
294
126
www.bradlygsmith.org
This is the last of my AIDS stories I think. I am not trying to make anyone sad, I had quite a journey with this disease, an incredible education that I couldn't have gotten any other way. I wish I didn't have it, and it's also a gift.

What I'm about to say seems unbelievable, but it's true, a memory that can't go away, I see its gifts now.

Mom had lots of singing vocal students. They were great. One was mom's best friend, and I had socialized with her a lot. She showed me her tarantula. Cool. Like my mom, she was very obese, and they enabled each other in what my mom called their eating disorder. Mom attended over-eaters anonymous (OA - I'm not concerned about her anonymity, she wanted people to know), I never talked with either one of them about it until the conversation below.

I had a celebration of mom's life in our big apartment with the two pianos my mom had, an antique upright with incredible scroll work, the piano I grew up with and played many times, and her baby grand. We sung all sorts of stuff, sharing their incredible voices that mom had coached (the neighbor came by the next day and told me the sounds were wonderful). But mom's best friend, the lady with the spider, didn't attend.

All her students were at mom's memorial, it was packed, including the great woman with the spider.

I called her the day after to thank her for so much. After a lot of chat, she said that mom's passing was such a sad surprise. I said, "I know, I had been so worried about her health." (She died after her seventh stroke, choking to death when the doctor removed the tube that was collecting the saliva she couldn't swallow per her wishes not to hang-on on machines - I didn't witness that, I heard it from a family member, but in an earlier visit I had seen her there. She was laying peacefully, able to breathe on her own, heart pumping away, and I said, "I love you mom." Her mouth started moving like she wanted to say something, eyes still closed, but she couldn't. I held her hand for a while.)

There was a long pause. I said, "Are you there?" She yelled into the phone, "You know Brad, you can be fat and healthy! Your mom died because she was so worried about your health!" The phone went dead.

I knew mom talked about her worries about me with her students. I very much appreciated their incredible support toward her. I also knew that this woman needed to blame something other than obesity. And I knew that worry can affect one in deep ways (in Alanon there's a slogan - there are so many - "Worry doesn't help anything.") I also knew all the things mom had seen and supported me through, and that it's probably impossible to not worry about a son with pretty advanced AIDS, and that it may have unintentionally brought her to the comfort of food. I don't blame myself for my mother's death, truly, not at all.

The reason I say her words were a gift is that I learned the biggest lesson about forgiveness I had ever learned; her angry words weren't about me, they were about her. Then I realized all the hateful things people have said to me, especially as a child from other children, the physical abuse I endured as a youngster and as an adult was never about me; it was about their internal struggles, their inability to fully love themselves projected onto a hapless guy just trying to get through life. After I realized that, my heart filled with compassion toward them, even the guys who gay-bashed me after accepting an offer to go outside a loud beachside bar to talk with someone very cute who looked interested in me. He led me into a trap. And I love him, not only did I learn a great lesson about my too-trusting ways, he shared his struggle, not vocally but with a bat along with his gang.

We all struggle in life, but it is rarely shared. I thought originally that starting this thread might add to my difficulties, but I remembered threads about others' health and life struggles, and the support they got. Truth is so liberating. You guys and gals are great! But I thought surely they wouldn't understand an AIDS struggle. Share my AIDS story on the internet? How crazy is that? Especially since I was still a bit ashamed of this disease with "acquired" in its commonly used name, no other acquired disease has that moniker. I had no one or any unknown causes to blame. Shame was lifted in part by posting all this and your incredible support. I know some people out there (mainly in this country) believe that AIDS is a just punishment for bad behavior, but not you guys and gals; I now know it was a gift that had priceless treasures inside once I unwrapped it.

The comment "I was just gonna call dibs on your stuff..." was perhaps the biggest prize of all. It made me laugh so hard I thought I was going to pee, and made me feel accepted.
 
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bradly1101

Diamond Member
May 5, 2013
4,689
294
126
www.bradlygsmith.org
As a healthcare professional I would like to offer an apology on behalf of the medical community. I look from the inside of this system out. Having people remind us of what it looks like from the outside is necessary. I try my best every working day to make a positive impact. Some days are better than others.

I admire your courage and tenacity. Your ability to carry on in the face of adversity is inspirational. Keep telling your story. As you can see from this thread people listen.

Primum non nocere (first, do no harm)

Sincerely,

MdM
We all do what we can, and some are prejudiced, and can't see beyond their ignorance. It can be sad, but I had time in the waiting room to agree with a professor/writer/activist friend of mine who disagreed with a popular essay going around about the importance of protecting one's children from political nightmares. [sorry a little political] I shared my stories as a young child of going campaigning door-to-door with my parents, who were trying to get people in Orange County to see the benefits of McCarthy then McGovern. Doors got slammed in our faces. "Nixon's the One" was the big slogan in '68.

I understood this thing called politics for the first time. My parents talked with us about Viet Nam, Nixon, Mao, and the Cold War. Unlike now, the horrors of war were shared from the front-lines by intrepid reporters on the nightly news, every night. The message had to be controlled for the war machine.
[/politics]

So amid the lack of concern the doctor's office showed, I found a gift - time. An empty tummy sure, but I'd survive.

As for your apology, I appreciate it, and I know you had nothing to do with it, as I have nothing to do with the employee at the store who hasn't figured out that being helpful will help him and his company, despite my years of customer service. Paths...
 

bradly1101

Diamond Member
May 5, 2013
4,689
294
126
www.bradlygsmith.org
As a three year survivor on the cancer drug Opdivo, I have often wanted to ask a long term AIDs survivor this question.

How the hell do you cope day to day with a sword dangling over your head?

I pray your medical team comes up with a new combo for you that turns things around & I am so sorry for the loss of your SO
Sorry, I got a little lost in the responses, and just read this as I looked back over the thread.

Thank you (all) for your support and empathy.

All I can say about coping is that if I'm not doing things (writing, reading, learning, shopping, exercising, socializing, meditating...), I dwell and I'm in the pit of hell (cool, there might be a poem there). Life is the best therapy, even physically. I share a lot and get long-winded, aspects of life seem to prevent brevity.

So, just this, another 12-step slogan/axiom, "I got better when I got busy." I can be brief!
 
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bradly1101

Diamond Member
May 5, 2013
4,689
294
126
www.bradlygsmith.org
Just heard from the patio behind the next building, "So you're gay, work in finance, have a good relationship, and you're transgender. That's so great!"

The growing empathy in my country is amazing to watch and experience. Waking up to others' struggles and putting a warm glow on your own. Magic.
 

bradly1101

Diamond Member
May 5, 2013
4,689
294
126
www.bradlygsmith.org
And I do live in a very gay-friendly neighborhood:

"Alamitos Beach is known for its vibrant nightlife and for its significant LGBT community. The Broadway Corridor business district in Alamitos Beach is home to many well-established bars, restaurants, and other businesses that are mostly gay-owned and operated or cater especially to the Lesbian, Gay, Bisexual and Transgender community. Bars serving a largely LGBT clientele include The Paradise Piano Bar and Restaurant, The Brit Pub, The Mine Shaft, and Sweetwater Saloon. The coffee houses and restaurants, which typically remain open until at least midnight, are "gay-friendly" but also serve a large straight clientele."

https://en.wikipedia.org/wiki/Alamitos_Beach,_Long_Beach,_California


I've always loved the name, "Mine Shaft."

Edit: Laguna Beach in Orange County used to be gay-friendly, not anymore.
 
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bradly1101

Diamond Member
May 5, 2013
4,689
294
126
www.bradlygsmith.org
As a three year survivor on the cancer drug Opdivo, I have often wanted to ask a long term AIDs survivor this question.

How the hell do you cope day to day with a sword dangling over your head?

I pray your medical team comes up with a new combo for you that turns things around & I am so sorry for the loss of your SO
[Sorry, reply #2, but worth more than an edit IMHO]

I know that "getting busy" can seem like a way of avoidance (not wanting to face things), but if the things I fill my time with are esteemable, they're quite the opposite of hiding. Demonstrating to myself that I'm worth good things too is a path to healing, and a life worth living.
 
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bradly1101

Diamond Member
May 5, 2013
4,689
294
126
www.bradlygsmith.org
If you've never heard Mahler's 2nd (The Resurrection), I hope you hear it all in your life. Courage through dying. A path to peace. This is just the last movement among the incredible others. The words melting away fear. I saw my mom sing this. She and Eljon guiding me into the end of my final chapter. Eyes (and ears) wide open. [8 min. long]

 

skyking

Lifer
Nov 21, 2001
22,215
5,075
146
Mom was more a fan of ribaldry, she would have suffered through the classiness to get to the piano bar interaction
 
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