What I Am Needs No Excuses

The weather is gorgeous. There's a lazy breeze blessing a street fair in town. My lunch was a fragrant, ripe tomato sliced onto roasted garlic ciabatta bread, drizzled with fruity olive oil and balsamic vinegar, plus salt and pepper. This morning, I installed my air conditioners. I should be thrilled. My apartment is utterly spotless. By now, you probably know this means I'm hopping mad.

Daria: So what's with you and that guy?
Tata: Got me. I'm a positive treasure, and if he doesn't know that he's just wrong. I can't even take it seriously.
Daria: I've already picked out your next ex-husband. You should marry him, then start dating.
Tata: Is divorcing him first, then dating too intimate? I'd know we could live together if we separate decently.

No, my sleep-inducing love life merely annoys me. My problem is this.

Jim in LA here with a site update: I just spoke with Jen and a member of Steve's family has requested that no further communication about Steve's condition be communicated with his readership through this site, or in any other method.

We will comply with the request - so if you want to know about Steve's condition, there won't be any further update until he's able to communicate it himself.

It took me about three hours to stop seeing red. I've never met Steve Gilliard and yet besides the anger I also feel a terrible, choking fear for him. Someone in Steve's family is not actually on Steve's side.

As a family, we LongItalianLastNames have just been through hell with Dad's illness and death. Even so, it could have been a great deal worse for us, his caregivers, and for him. After Darla, who is well-versed in the blogosphere and conversant in matters newsgroup-related, posted to Dad's newsgroups details of his condition, then put up a livejournal to keep phone calls to minimum, affectionate posts and emails rolled in in waves. Hundreds of people wrote to say how much he meant to them. We were in tears every day, all of us, especially Dad. He was shocked, completely shocked because he hadn't always been an unmitigated nice guy on the net. Hell, he wasn't a nice man, but he was a good person, charming, well-informed, a better writer than I will ever be and where food was concerned a genuine expert. He'd helped and amused a lot of friends and strangers, and they wanted him to know it. Moreover, Dad had radio shows in the Shenandoah Valley for 20 years and he'd done all sorts of local television. He had fans. Going to a grocery store with him was an utter nightmare, even when it was interesting to learn everything there was to know about kiwis. Those people who'd listened to him all that time sent cards and letters. The phone calls were relentless for weeks. It was an awful lot to deal with, especially for Darla, but it is part and parcel of having a family member who is a public person, and it made Dad feel loved and respected. Families have to deal with that, whether or not they like it.

There's more: sometimes, the needs of the sick person conflict with the needs of the caregivers. We were lucky that Darla was capable, intelligent and completely devoted to Dad. Darla made sure that what Dad wanted, Dad got. We went to help and spend time with him, but Dad made the decisions and Darla backed him up and there was no discussion. No matter who had an issue, it didn't matter. Only Dad mattered. We were there, yes, our feelings meant something to some degree but not much. I was entirely clear that my feelings had to be put aside for another time and my needs were insignificant. I wasn't the one dying. So, we were lucky. Not every sick person has someone like Darla, whose every effort for two months guaranteed Dad a minimum of strife and anguish. If not for Darla, Dad's last days might have been very miserable indeed.

What if the wrong person or no person is in charge? What if the person who is supposed to make decisions doesn't really know the sick person or care what the sick person wants? Years ago, a friend of mine died of complications of AIDS. Her family, from which she had been estranged for more than twenty years, wanted nothing to do with her. Did not visit her while she was slipping away. When she died, the family initially did not claim her body. We were street kids. No one I knew had the means to do that but I remember being shocked that they hated her so much they waited three days to have her body cremated. It happens. Sometimes our loved ones hate us.

Sometimes, we are part of a past they'd rather forget. Sometimes, they don't know us at all. I am very careful when I talk to my family members about myself because I see our shared history being rewritten, and my part in it comes to sound very strange when the rest of the tableau has a wicked coat of whitewash. And there are just things about me they don't know and don't want to know. I can say this with complete certainty because any conversation beyond the smallest of small talk results in shock and "That's true, but..." negotiations, though at my age, my personality's fully formed, my views are published here and there, and I'm not going to become the nice person anyone wants me to be no matter how it reflects on them. I was estranged from the family for more than ten years. They don't really know me, and for the most part we're comfortable that way.

Steve Gilliard's family may mean well, for all I know, but it takes a certain kind of bizarre selfishness to deliberately turn a blind eye to Steve as a person, and a public person at that. In the way that political bloggers can be, Steve is famous and people care. He cares about them too, which we know because he asked his blog partner Jen to post updates on his condition. His family knows that, so why the pointed request to stop?

Selfishness. Steve's inability to speak for himself has given someone else the power to steal the meaning of Steve's life and work. His identity disappears, just as Dad's would have if someone besides Darla had been making the decisions and cut Dad off from his community, affection and support. It could have happened without her. I shiver when I imagine how he would have felt and what he would have been thinking about his online relationships if someone had just turned off the computer and denied Dad succor.

Whether or not the - as Jen termed it - "dissenting family member" gives a shit about the blogosphere and what it means, Steve does. We have years of reading material as evidence. It's not a mystery. What is mysterious is why anyone would deny the person his people, our affection, our support and concern. Who is protected? Who exactly is served? It isn't Steve. Jen asks us to respect the family's decision, but my thorough contempt for it harms no one. Once again, my feelings on the matter are of no importance other than here, and I say what is important is respect for the sick person, not what we wish they were.

Some time ago, I wrote a profanity-laced rant about what, pursuant to my untimely demise, my life may mean. It is called Uses of Me, and I mean every foul-mouthed, uncompromising word. I am what I am, not what someone else wishes I were and not what someone says I was independent of my actual life. In light of what's happened to Steve Gilliard, I'm going to get a will written post haste and inform my family, such as they are, what they absolutely will NOT be doing should I linger, like cutting me off from my friends.

I could be wrong about Steve's family. Hell, I could be wrong about that man I might or might not be sleeping with, but if I'm not, there's cause for concern. I can't do anything about either situation. I can encourage you to take steps to avoid finding yourself at the mercy of some well-meaning idiot who doesn't know you, because, yes, that is Hell on Earth.