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 Christmas Memory
So, I’m between eight and 13 years old….
The Christmas Rule in our house was “No Waking of the Parents for The Opening of Presents Prior to 8:00 am EDT on the 25th.
Generally, even though we didn’t do church, we went to the Basically Protestant (but not evangelical) Christmas Eve thing. Songs, Carols, a sermon about what Christmas really ought to mean..and then candles and home…
And for that one night, there was geniune mystery in the house…lights were dimmed so the tree could show off… Cookies, and eggnog were had by its light….My father, the uapologetic alchoholic would go on to wreck other Christmas Eve’s but he hadn’t started yet (or at least had the courtesy to wait until I was asleep..).. He would read the Nativity story in Luke, and sound like he genuinely gave a d@mm about the journey, the pregnant woman having to bed down in a barn…and the initial WTF reaction the sheperds have, followed by belief, and mystery about this baby.
Then I’d try to go to sleep…and search for my own personal Star…I imagined, even though no one’s theology said this, that the Star reappeared every Christmas Eve…to confirm it was a magical night. I’d always pick the brightest star I could see, assign it the Star’s role…and finally fall asleep…and manage some….
The worst year was when I woke up at two a.m.
And knew there was no way I was going back to sleep. So I read some of my favorites, Robin Hood, and some cool story about the first school for service dogs, and Little Women.
By five am. I was damn sick of reading. So I turned my light off, and went into the living room, missing the creaky floorboard in my bedroom on purpose…to carefully prod at the stocking, assuming I’d be able to make sense out of the bumps and corners, but too scared to actually sneak anything into my bedroom and *look.* Same for the big boxes…I prowled around the corners of the tree, crawling, and examining various boxes, putting them *exactly* back where I found them.
I maybe had a clue about one present after that….but that was all.
I snuck back into my room at six and watched the morning get there.
By 7:45 I simply could not stand it. I *ran* out my door, ran through the middle room and threw open the master bedroom door, and actually leapt onto my parents’ bed successfully, and said. “I can’t *Take* it anymore…I’ve been up since two, can we pleasepleaseplease open *Boxes* Now?????!!!!”
Even then, the Rule held, because Mom insisted that we brush our teeth and put on robes (for the picturetaking of course.)…and she made sure it took how long?
Exactly 15 minutes.
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It’s long ago and far away Dad’s gone…Mom’s her own kind of distant…but I’m making the cookies myself this year, and have the same Christmas Music (Eugene Ormandy Conductor of the Philadelphia Orchestra 1959, “The Glorious Sounds of Christmas,” ) and have a Christmas Eve service to attend…
Alone…but not quite alone. Presents scaled down… but not quite gone.
(“The Economy, you know…” .) (Scrooge would be cackling with glee somewhere if he was real)
Because the mystery, as Doctor Seuss has said, can show up without “packages, boxes or bags.”
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Happy Holidays.
Happy Hanuka.
Have a Cool Yule.
Happy New Year.
And, “Merry Christmas, to all and to all a good night.’
Brother, can you spare a dime…
I’m slowly moving from one house to another, with the inevitable sort…
I find two paychecks addressed to my father from his job at the gas station….more than 180 days old, so no way for anyone to cash them.
I find an envelope, not addressed to me, but I examine it.
It has the name of a homeless shelter / AA workshop well known to my father emblazoned on the front.
And a crisp twenty dollar bill in it.
From nearly 15 years ago.
I’m trying to reconstruct his intentions. What he intended to do the day after he died.
One thing, fairly mundane, he probably was going to head out from the halfway house where he lived to cash the second to last check. (I found two, but the second was clearly mailed to the halfway house just before his death, perhaps even the day before.)
Maybe he was going come down on the #3 Detroit Rd. bus to downtown, to eat lunch with me, as he did from time to time back then, and cash the check during his walk down East Ninth Street.
And then, probably that night, since I’d imagine seeing me was difficult for him, he’d head to the AA meeting, with that envelope for some giving back and getting some support.
My attorney father was irreligious. Non-religious. His immediate family, myself and my mother was the place any money that he earned ever went to, before 1970. Before the drinking really had its hooks in him. But that workshop/shelter saved his life, and got him sober enough to work again, when he had not held steady job since his 1986-1990 stint as a night manager at a Burger King.
So, I’ll bet he learned the art of giving back, there at the end of his rope. And the part that’s purely speculative. I don’t think this was the first envelope he’d filled to give back.
It was too neatly tucked in with the paychecks, hidden between them, something his loving, skilled at all issues domestic last girlfriend had never found. This was separate from the box of memorabillia she had given me at the time of his death.
At the time, I donated his beater car to the shelter, having no idea I had that extra twenty, and they were happy to get it, since the recovering guys often found that getting a job was easier with a car than without.
So, I’m going to send the shelter a check for twenty bucks, and thank them for helping my dad. Thank them, because by helping him, they also allowed him to help me with transport, and cleared his head enough to allow him and I to have a decent positive connection, there at the end.
Thanks for the twenty, Dad. Thanks alot. I appreciate it.
Father figure
Funny, I don’t see him as a father. But I do see him as a close friend.
My stepfather was born in Germany during WWII. His father died early in the war, (Luftwaffe, I believe) and his mother lived to an extreme and comfortable old age in a small town, where, until very near her death in her nineties rumor has it, she walked down the hill for her groceries.
He is something I never thought to have, in a father’s space. A balanced, calm, even tempered guy, with a talent for making and fixing things and a truly sunny disposition.
He’s been so good for my Mother. When she would have a concern about work, about home, about a vacation, something that in her experience needed to be planned down to the last detail, he would help, but help in such a way as to ease her concern, not inflame it.
I like his kids, they’re fine with me, but we see each other rarely, and don’t behave like siblings.
I was grown up and married myself when he married Mom, so that’s why we’re friends, I think, rather than any kind of father and daughter. One son made me an entertainment storage shelving set, from scratch, as a Christmas present one year. It’s the only piece of my present furniture that I actually give a damn about, and would take great care with, should I move again. His grandson was a baby when last I saw him, joyful and curious about the way I walked…”Do it again!”
My stepfather is the the only other left of center political person in my family, cheerfully unruffled about that and not at all intimidated to engage in civilised but straightforward debate with the family of good hardworking, immovably rightward people he married into. When I found this out, it was a great relief, another thing for us to discuss and bond over; he enjoys the same news program that I do every night.
I miss him as much as the rest of my relations, and he’s one of the reasons that if my life allowed me to move back to Ohio, I might just do that. I wish I could be of more help to him and my Mom than I’m able to be right now…but I cannot be the able grown adult who handles some of life’s tougher moments for aging parents. I can be of help mentally speaking, and when I’m feeling up to it, do as much as I can.
I figure he’s gardening today, watching out for the (too many) deer and other animals that have become his neighbors.
I’ll wish him happy father’s day tomorow, grateful for the ‘happy’ part more than anything else.
At home in summer…
Okay, so it had a telethonish name. Second okay. Many disability activists have scorn for camps for kids with disabilities.
Sorry, I don’t.
Five and later six twelve kid cabins, a separate accessible showers-and restroom building, a dining-and recreation area. A pool. (*without* a ramp, when I went there! It has one now. No one had thought of it in 1948 when the camp began or in my first summer 1970 when I was eight-going-to-be-nine)
Concrete floors (damn were they cold on bare feet!) and leftover cots, maybe from an army base. We brought our own things to brighten up our space for the two weeks.
It was the first place I did chores. The counselors wouldn’t take any lazyass whining, so I learned to sweep as well as make my bed. I didn’t see it as sexist at the time, because the counselors made the boys make their beds and sweep too. Anybody who didn’t have the physical capability (or cognitive ability) to do these chores were shown parts of them, and did what they could. The kids with more physical and/or mental capability were expected to help those who did not.
(I think this was a conscious effort to break down some obvious prejudice in myself and my schoolmates, who tried to self segregate on the basis of being ’smart’ or not.
We didn’t want to play or socialize with the kids who were congnitively impaired, but this, and mixed activity ended up forcing the issue.
I think a lot of us were too young to confront our prejudice right at that moment, but did later, and it helped anybody that we came in contact with later in life that had a cognitive impairment; cut down on the jerky behavior, exclusion or cruelty.
Teenagers went there too, and the counselors job with those kids was to practically spend 24/7 trying to prevent any public displays of affection, pairing up, brief ‘dating’ ideas or god forbid hooking up.
(Thankfully, although I didn’t ‘hook up’ there, I did meet my husband there, and evaded enough of the ‘dating police’ crap to have some sweet early times)
So, I just can’t hate the sappy name, the stupid songs or the friends and boyfriend I remember meeting there. I didn’t feel excluded. It was freeing….to not be ‘the crippled kid’ because, well, so was everybody. It was the one part of particularly my adolescence when I wasn’t at the bottom of the social ladder.
My husband and I went back briefly in the summer of 1992. We both wanted to walk the ground were we were most respected as people, and had met each other. There are pictures of him standing there on a cloudy day with his camp tee shirt he got when he was 17, smiling at some remembered prank.
The one thing that I’m sad about is that a lot of my friends from that time are gone, either far away or actually died pretty young,
We were a rowdy bunch in the seventies, up for being thrown into the pool, or wheelchair basketball or dancing, or marching around in the dark.
At home.
