This is going to be a repost of some ideas…because
I’ve just had another longtime acquaintance diss my political and religious choices.
Sorry for the rehash, but I’ve just got to lay it out one last time so people get it.
Politically:
We now live in a society where corporations are people, according to the Citizens United decision.
If they are people, they aren’t the kind I’d invite to dinner.
Republican, Tea Party, Independent, Liberal, Progressive friends/family listen the heck up because I’m tired, tired tired of laying this out in gory personal detail for you.
I cannot trust any big corporation ever again. If someone else wants to, or believes they must because it’s in the Constitution that they have to love big corporations or they are a traitor to the Great God Capitalism…then go ahead.
I cannot trust any big corporation ever again because in the 24 months from summer 1982 through summer 1984 corporate decisions were made that allegedly caused the death of my HIV positive hemophilliac husband. He was a difficult man.
[for the record I’ve recently found out through medical research and checking his record that it’s extremely likely that the degree of his legendary temper was caused, in part, by HIV related brain lesions. Changes the picture yet again. I just wish I would have known more about the lesion thing early on. ]
I loved him. He loved me. He told me I was beautiful every day. And meant it. The disability, the weight, were unimportant to him. He married me when he could have married an able girl.
He was the *only* man to stand up to my father in my name, to tell him to go to hell.
We had that chemistry thing. That was why we made the WTF decision to marry in the first place even knowing the ‘risk group’ he was in. (doesn’t ‘ risk group’ sound damn antiquated now?) We finished each other’s sentences. We played a lot.
And allegedly because of a decision meant to help the ‘bottom line’ by a number of big pharmaceutical companies to not retool and make the production of a life sustaning medicine safer as early as they could have…he’s not here anymore. It killed him by inches and he was fcukin’ brave about it…especially at the end. No human being should have to go through that and so many still do.
I. cannot. trust.any.big.corporation.
Another reason not to trust them that affected me quite personally.
Rick Scott, the current governor of Florida, was making big money in the eighties/nineties running a company that was busy defrauding Medicare.
My boss at the time thought that that company Columbia HCA, ought to be allowed to merge with his company in a Kaiser Permanente type mix. He wanted to change to a for profit company.
Well, long story short, that boss got fired for pursuing that, and my company was uncertain, unsettled and in transition for awhile.
This was one of the factors in my (looking back) unwise decision to relocate westward. It spooked me. I got afraid the company would vanish.
So, there is just no way I can support a party that supports big corporations.
Can’t do it. Will. Not. Do. it.
I can abstain from discussing politics offline. I’ve done that and will continue to. I love my family, they love me, and we do have bunches more to discuss than politics, and we don’t want to become estranged. So we make an effort.
Religion:
Why did I go there at all?
Well, a purely pragmatic need for a support system became clear. In 2008/2009 I discovered a great nearby church that happened to be Catholic.
My decision was, “I’ll go, get quiet, meet some people, listen to the music…get a bit of help when I need it.” It’s five minutes away from my house. (I was still in Denver at the time.)
And then, God showed up. It was annoying really. I hadn’t had the best relationship with God. God got ditched in ’93 and I had no plans to actually reconnect.
“What in the heck are you doing here? You’re supposed to know everything, so you know I’m just here for regular reasons…not really looking for you. So leave me be!”
Too late. It was and is a profound experience. Uniquely personal. And that’s it.
Has this religion, have all religions made huge mistakes? Heck yes. Are there specific parts of the theology that really make me nuts? Heck yes. Am I going to use my brain to work out my day to day practice in a way that doesn’t make me nuts? Absolutely. I’m no mindless sheep.
Do I have to answer to friends/family/nosy-ass strangers for the mistakes or the parts of the theology that make me nuts?
No.
And again, I think it’s the rudest thing in the world to go door to door for Deity. Won’t be doing that.
Have I turned into the Church Lady?
Heck no.
So to summarize.
Not supporting a particular political party because they support big corporations that *will do harm* financially or physically if let off their leashes does not mean I’m going to hell.
Being Roman Catholic does not mean I’m going to hell. Or Heaven either. It gives me no superiority or inferiority. It’s just one of my choices.
Good grief. Democracy and religious freedom. Ever heard of them?
PS. And by the way. Just by the fcuk way. It’s “Democratic Party.” not “Democrat,” party. Give us our full list of syllables, even if we are “animals,” threatening to “destroy the country.”
Target Practice
Warning: difficult read ahead, especially for those who don’t know me offline.
And this sure as hell aint going to FB.
I was afraid this would happen when I moved to this county. And last week, it did.
I’ve been wrestling with how to write about this, because what happened last week has affected me all over the place, even though I’ve gone over this ground before, I’ve got to walk it again and exorcise more proof that I am Not Really a Nice Person sometimes.
A woman came up to me in the grocery store. I recognized her, and adjusted for age. She’d been younger when I knew her. She recognized me. She said: “Oh, it’s so good to see you! I often wondered what happened to you, and I’m glad you’re doing well.”
I looked her straight in the face and said coldly,
“I’m sorry ma’am but I don’t know you. You must have mistaken me for someone else,” and wheeled away.
I’m sure she was puzzled. Because she’d been there. I’d been there. Even my late husband had been there. In church. His church. In the spring of 1992.
It was a small church, of about forty people. He’d gradually been moving away from seminary style lecturing and more into sermons that genuinely gave people something good to take away with them, to help them in their lives. After all it was just his first pastorate.
By taking that pastorate, he automatically became a moral arbiter for them…someone whose life they could look up to. The optional part, real caring for his small band of parishioners, was not hard to do. They were the salt of the earth, similar to his own family.
And his best work with them was the hospital or home visitation. Because he knew about suffering. Yes, indeed.
But he also carried a secret they did not know.
He committed a sin of omission when he accepted their call.
And, God help me, I initially encouraged his silence. This isn’t an excuse, just an explanation. He had worked so hard, against the advance of illness, to just finish seminary, that I knew he wanted the rest of it so badly. He wanted to fully practice his profession before he died. And I wanted that for him, even though I knew that when his sickness became generally known it was going to be awful. (and even though I knew I would be completely lousy at being a pastor’s wife, which was absolutely true. )
They asked him about his health. He said he was fine. (his meds were working well at the time and he had very few symptoms. Wasn’t that healthy?)
He did not tell them of his medicine and/or transfusion acquired HIV disease. AIDS, that was in its later stages at that time.
Eight months after he accepted that position, when he and they had begun to really connect in an authentic way, he realized he was getting too weak to continue the hour and a half drives and the work in the church much longer. He opened up to his immediate superior in the denomination, who was compassionate…but wondered how, and in what format he would tell his congregation.
Ultimately there was a long rectangular table. The elders of the church were facing him and also spilled over onto one of the sides. I was on the other side alone, and my husband and his superior were on the other long side. I wonder now, why I didn’t get to sit next to him. Why my shoulder couldn’t have been next to his. Why I could not hold his hand? I don’t recall. Maybe it was the film projector that showed a sensible film about the nature of HIV. Sometime before or after that film my husband told the elders about his illness, and why it was his reason for leaving.
Then it started. The absolutely legitimate anger and sense of betrayal. The complete loss of trust in his word, again understandable, not because any congregant with HIV should have been outed, but because he held a position of authority and had omitted this information, in their view outright lied about it, which generally is something someone in authority shouldn’t do.
How could he do this to them, they said. Why on earth had he done this? How could he have let this happen and still call himself a pastor?, How could he do this and even call himself a Christian?, they said. One congregant, at least seeing a little of the big picture said, “but would we have hired him if we had known?”
Soon, mixed in, was a great deal of fear for their children fear that perhaps he had passed it on to their children through some accident…even fear that he knew he had harmed someone in church inadvertently and kept that secret as well , fear of having broken bread with him, or drinking punch from the same bowl. Fear of using the same restroom he had. Later, some families kept their children out of Sunday School because they really felt they were not safe with him…
“As if,” he would shake his head and say through tears, at home…”As if I would EVER, harm those kids! They’re even more my responsibility, when I’m with ’em than the rest of them are…I would never,” and then he would dissolve in tears again…
Youth pastoring was not his forte, but he absolutely understood his duty to them when he was nearby.
He was uncharacteristically silent the entire length of that meeting. Not a word, which was probably one of the reasons that they continued to hammer at him for forty-five minutes straight.
They used him as verbal target practice.
It was as if they had not seen the film that had run ten minutes ago.
Then, I spoke, because forty five minutes was a damn sight too long to keep silent when your husband was being attacked.
I knew why he’d kept silent when he was hired because he’d told me at the time, . “I’m afraid. I’m afraid of losing my one chance to do this one thing!” He was crying then.
I said to the elders: “Haven’t any of you…*any* of you ever done something you *knew* was wrong…out of fear?”
As I suspected they would, the people who a moment ago couldn’t begin to stop the flow of words they used like bullets…suddenly fell silent.
Crickets.
Let he who is without sin cast the first stone, and all that.
When they let us go that night, and we headed for our car, one woman came specifically to me and said, “Why didn’t *you* tell us?”
I gave them an answer that was consistent with their theology of the role of women and wives.
“It wasn’t my place.”
Within the next week, my husband had another brief meeting with the elders where he said he felt he could remain until the end of June, since he knew it would take them awhile to find a replacement. One cold hard woman voiced her opinion as if she spoke for all. “I want him gone, NOW!” while he was standing right in front of her.
Enough of them were pragmatic, that they let him stay til June.
But when I heard about that one nasty answer…that was it for me. I never set foot in that sanctuary again. I know, from the outside that this was viewed as non-support and his family wasn’t happy with my absence.
However:
I knew one of two things would happen if I did show up. Either the entire building would spontaneously combust, just because I was in it, or the barbarian protecting her spouse would as soon spit on them as speak to them nicely. I’d have engaged in conduct unbecoming, and given them a verbal flaying reminiscent of what they’d done to him.
Because at home, the mental focus that he’d kept, the whatever it was that had kept the physical effects of his illness lessened for much of the last four and a half years…was gone. He was devastated. His voice was fainter, even in public…and he wept in private. This broke him.
Yes, I know. He couldn’t escape dying. It was three years too early for the drug cocktails in use today. It was going to happen…and it was not going to be far away.
But I really and truly believe that if *some* of them..had been able to be more restrained. Kinder. And saved some of their: “Why did he do this to us?” for a private discussion between themselves…if some could have been compassionate, since he was leaving in June anyway…
He would have lasted longer. This made him go earlier than he should have. Maybe even a year sooner. A few months. A month or a week or a day sooner. He would have savored that time with me and his family.
His mother was there every Sunday for those last sermons til he left that church, defiant and proud of her son. She had never cared what anyone thought about what she said, and wasn’t shy about her opinions. That served him very well, I imagine. One mother did decide to bring her children back to Sunday School. I was grateful to her then for doing so.
The church still exists. Same name, same location. Nine miles away from where I live.
My new tradition, my new belief system, says I have to forgive them.
I sincerely hope God has forgiven them. I do. Because intellectually I get that everyone deserves forgiveness for some things. Especially for just forty five minutes and ten minutes, especially because they were right to feel their trust had been betrayed, as I’ve said.
I’m still unable to forgive them myself.
Perhaps with my last breath on the planet.
I think it unlikely.
Say a lie enough, and eventually it’s the truth
Now, before tonight, I knew about this phenomenon, but had never been so virtually ‘close’ to an AIDS denier before.
On a board I read often…over and over and over in the last four days, someone’s been earnestly telling the world that HIV alone is not the cause of HIV disease.
also has said things like “I’ve never seen a hetero case of AIDS,” etc.
Now honest to god. It’s been long enough that I have stretches of nearly a year straight when even this kind of stuff doesn’t rock me. My life is not a shrine to someone elses. The history does matter, and the trajectory was forever altered by losing my spouse to AIDS, but I’ve done a B- job of moving through….
But today when I saw the **** above being credited as scientific fact…
Well, I replied to them:
see I lost a spouse a “hetero case of AIDS” years ago…I still keep in contact with his physician every now and again…yes the treatments have changed etc…The cocktails are hard on the system..that does not change the fact that the root cause of AIDS remains…H I V!!!!!!!!!!!!!!! I don’t make this up out of my own head…I get the info from doctors I have a long standing relationship and trust with.
I wish I knew why it was important for you to believe something so patently false. HIV is the root cause of HIV disease. That has never changed.
And every time you write/say/speak this “co factor” falsehood, you are feeding into the lethal idea that “HIV is no big deal,” whether you intend to or not.
Thus, even if I wasn’t feeling great hostility towards the words of [censored], I would still say…they are causing much more pain than whatever “…satisfaction?”[censored ] gets out of spreading this lie.
Never forget! as they say about the Holocaust. Never forget what’s real or all the gay/straight men/women children/adults who died of AIDS will have their memories continue to be cheapened by the likes of this crap.
It pissed me off and it made me cry and it’ll take an hour or two to get back to even on this.
The facts of the case:
Three things kinda ran into each other for me yesterday. I’d had a difficult discussion with a family member about why I believe as I do, and I was geniunely angry at the end of the call, so were they and neither of us wants to be so we made a great effort to smooth over those places we willl never see eye to eye on.
Dummy me. I wanted to go and get some facts, facts about the first thing to begin to push me outside of the orbit of Reagan republicans, into a neutral apolitical stance and then further in the opposite direction. To try to explain why unfettered capitalism is literally lethal. I thought maybe then I’d make some headway. Maybe I’d be able to explain, so I wouldn’t get called ‘crazy’ in my own house the next time a right-leaning relation came visiting.
And the third thing: anybody who has seen the news more than once in the last month has seen more and more documents come out, detailing what happened in the last administration. A small and growing group of memos that elicit, “Damn, we knew it was bad, but *this bad?*
Trust me. There are days one should stay away from teh Google.
Because I found a similar goldmine of information about my own personal nightmare.
Why I can’t trust a corporation (not just a pharmaceutical company, but any g-d corporation. ) Why *nobody* should ask me to.
The medicine that allegedly caused my husband’s death, contaminated Factor VIII
was made by one of the corporations discussed in this book.
(a glossary kind of note: the word “fractionators,” means the drug companies that made the stuff)
(see particularly pages 640-until a page gap at about 648?)
But, after reading the above link, I realize I didn’t know it all.
Regrettably, there is the appearance of stonewalling, willfull disregard for patients lives at the pharmaceutical company that my husband used. (It’s the one they go into the most detail about)
That, I knew.
I was one of the claimants that settled.
But unless I’m misreading this, there are some things that are new to me.
The appearance of a kind of collusion between an advocacy group, the pharmaceutical company and the treatment centers. To minimize the appearance of risk. To maintain the longstanding profitable relationships they’d had between them.
Proof that if you’ve got a good thing going, you’ll twist your moral compass to keep it going.
PR firms were hired. To polish the image of the companies that made this stuff.
On July 16th 1982 this company was first made aware that the medicine it sold could have deadly risk for its customers.
I thought there had been a six month window when they did not retool, did not start heat treating the medicine (that inactivated the HIV virius if done properly)
February 1984. That was the length of time…. July 1982 to February 1984…study groups, omission of information, at one particularly crucial meeting at the CDC on July 27 1982.
It is heartening to read about one big gun that I and my husband had spoken with, Bruce Evatt. Who was at least *trying* to get at the real answer. (Even though some of what he presented later proved untrue, it doesn’t appear he was in anybody’s pocket or deliberately soft pedaling the risk.
But he could only work with the info he had.
My emotional stability, messed up at best, started to unravel all those years ago…
My husband lost his life to this business and I lost both him and my own steady center.
Do these fools detailed in the above link even *remember* by now? No.
I’m sure they sleep well enough.
A member of the family.
No, I’m not related to him. He’s a big cheerful guy who is most comfortable in the outdoors on a boat, fishing or not, or even the occasional hunting trip.
He’s also a Star Wars geek, and a carpenter… and he still calls me ‘Cuzz.’
He was my cousin’s husband, the cousin that always felt like my sister, before she passed away after a seven year long fight against complications of diabetes, she ended up with both visual and mobility impairment…It was a long difficult time for both of them.
In late 1991 they came to our house for pizza. Black humor often takes center stage when you feel overwhelmed by the fight your body is fighting.
My cousin Tiffany said, “Hey, do you *believe* how many separate diseases are in this room?”
My late husband, never one to shirk at odd conversation said, laughing, “Let’s make a list! ” He said, “Hmm, I’ll start. Hemophilia and AIDS.”
I took the next round. “Cerebral Palsy, Asthma and Cancer…”
Tiffany was next…”Diabetes, sarcodosis, glaucoma, kidney failure…”
And her husband said, “Hey!…I feel kinda left out!”
We couldn’t stop laughing for ten minutes.
It’s very clear that we’ve kept the connection because somehow, I don’t know why, he has a small obligation somewhere in his head that we should keep in touch and that he should look out for me in an appropriately small way.
One of my most profound regrets is that I didn’t spend as much time with them as I think I should have when her illnesses accelerated. I could mealymouth around it, but the cold hard truth is: after just finishing myself and the spouse’s long nightmare with my cancer and his terminal illness in 1993, my selfish want was that I *never* had to see another loved one suffer up close, never again…and so out of pure selfishness and fear, I was never close enough for very long. I did rejoice with them both and visited for longer stretches after she had a kidney transplant that freed her from the extreme discomfort of dialysis.
Near the end in 1998 I visited her in the hospital and tried to tell her who I was by sign, since she was blind and most of her hearing had eroded…I think she knew, because she smiled.
At the cemetery, he and I were crying. We looked at each other and moved into this huge hug that many misinterpreted…they thought he and I would be the ‘rebound’ sort of thing for each other…It wasn’t like that at all.
We’d both seen spouses through unspeakable things, and had part of our own innards pulled out emotionally in order that we support them as they needed.
He is the one person who understands as much of the entire scope of what I went through as an outsider can… and he believes, I think, that I am the same for him. Comrades in arms, in a way.
He remarried this decade and she’s been great both to him and for him, and …we get along well.
And after all the **** that his life has had in it….
He lost his job in December.
He has no health insurance.
He has no money (and by that I don’t mean even 500 a month. I. mean. none. zero.) He’s applied for SSDI Medicaid, Welfare, food stamps but those things take time.
His wife cannot work.
His electric, cable, phone have been shut off.
They’re repossesing his car next week.
And his landlord has indicated that unless the rent is paid in two weeks they will start proceedings against him. (When I heard this piece last night, I googled Ohio’s legal-aid website, gave him the number, and told him to call from his brothers phone, so they can stop the landlord from trying to evict him…I can’t do much from here, but by God, I owe him at least an effort to keep a roof over his head. )
But, he won’t be home this week anyway…
Because they’ve found throat cancer. The hospital he’s going into for the first round of 96 hours of chemo+radiation is helping him with an indigent program intended to ‘tide him over,’ until the benefits kick in.
There are two, single, very bright spots in all this.
One, from exploratory results, the cancer has not, metasisized. It is confined to a single source only.
and Two…the hospital he’s in…is the same Bigshot Hospital that saved my ass from cancer back in 91-92.
So, they’ll nail the cancer, I’m certain of it. He’ll walk out of there cancer free sometime in the future just like I did.
He’s chosen to be my family, and I’ve chosen to be his…
It’s interesting….because some parents or family members of person’s with disabilities can show ambivalence or negative emotion that they have this person in their lives…a relative…that they believe has made them work harder as a parent or family member than they would have had to do if the person was temporarily able-bodied.
I love my genetic family, but honestly, sometimes…
I love my friends, my family-of-choice a tiny bit more.
Because there are the occasional fights, the disagreements…the drifting away…
But not ambivalence. They want to hang out with me knowing (by this time, my sometimes difficult nature). They take me as is, where I am…no questions.
So I’m praying for my Cuzz today.
And I wish to any-gods-that-ever-were that the Congress would suck it up for health’s sake and *pass something,* so that he can have a *job* when he recovers.
Midlife And Treachery 
