Monday, February 28, 2011

The Super Terrifying Grandma Vanelli

When we were kids growing up in our clean, safe neighborhood on the southwest side of Chicago, the one thing that could always make us scatter in fright was the sudden appearance of Grandma Vanelli.

The Vanellis lived at the far end of the block. Sometimes Grandma Vanelli wandered out. Grandma Vanelli was a terrifying sight, wearing her babushka scarf, coarse knit sweater and faded flowery house dress. She looked like she was 300 years old, but when you’re 10 everybody over 60 looks like they’re 300 years old.

Grandma Vanelli never said a word. She walked around with her index fingers in her ears, like she was trying to muffle an excruciating din. That’s what made her so scary. She walked as slow as the mummies in those mummy movies. But if she came too close we dropped everything and fled because if Grandma Vanelli ever caught up to us she might do something horrible. She might…………well………I don’t know…………………………like maybe she might……………stand there next to us with her index fingers in her ears…………or something horrible like that!

Since then a ton of different people have come into my life for the purpose of wiping my butt. Recently, just for the hell of it, I started making a list in my head of the number of people I have employed over the last 30 years or so to lift me out of bed and onto to crapper and so on. I gave up counting at 34. A guy came up to me at an anti-war protest once and swore he used to work for me. I don’t remember. (And the wages of all my workers have been paid by our tax dollars. So chew on that, you selfish tea baggers!)

Of all these assistants, Chris has been with me by far the longest at 11 years and counting. We’ve traveled all over the country, to Canada and Germany.

A few years back, one of his younger cousins in New York was diagnosed with a tumor on her spine. “The doctors were afraid if they removed it she could end up permanently physically disabled from the neck down,” he says. The family rallied around her. If she needed anything, anything at all, they said they would be there for her. “She got flowers, candies,” Chris says.

Chris called her and wished her well too. But he couldn’t help wondering why no one ever sent him flowers and candy. About 15 years earlier, Chris went to see a doctor at a mental health clinic. “I went because I became rapidly depressed. I remember crying spells. I would get disgusted with myself because I would just cry. Horrible nightmares.” He was given a diagnosis of atypical psychosis and clinical depression. “I was very glad that I got told there was something wrong because I knew it was not ordinary.” But there were never any I'm-there-for-you calls from family. No one sent flowers. Everyone just tried to ignore it.

Chris isn’t surprised by the attitude. “When you’re mentally ill, people think you should just suffer in a room of needles and pins. You deserve it.”

His diagnosis has fluctuated from schizophrenia to post-traumatic stress disorder and various hybrids. The point is, through trial and error he’s found the right mix of meds and regimens to keep him moving forward and enjoying life. As an assistant, sometimes he gets deeply distracted and sidetracked. Sometimes he gets confused and has to be reminded how to do things he’s done several times before. But he’s easygoing and dead-on reliable. More than once he’s bailed my ass out when another assistant didn’t show up and left me stranded in bed.

I offered to give Chris a Smart Ass Cripple Alias for this story so as not to out him. I even offered to give him a noble alias, such as Nobel Prize Physics Laureate Zhores I. Alferov. But Chris insisted I use his real name. “I have no shame in being mentally ill.”

He sure as hell is right about our attitude when it comes to mental illness. We often act like a bunch of 10 year olds running away from Grandma Vanelli. Test it out. Try calling a florist and saying, “I need a nice pick-me-up bouquet for a friend who’s been diagnosed with a spinal tumor.” They’ll get on it right away. But then call and say, “I need a nice pick-me-up bouquet for a friend who’s been diagnosed with paranoid schizophrenia.” They’ll think it’s a prank call. Or go to your local cozy little Hallmark store and say “I’m looking for a card for a friend who’s been in bed all week with the flu.” They’ll have rows and rows of cards expressing the perfect sentiment I’m sure. But then say “Now I’m looking for a card for a friend who’s been in bed all week with post-traumatic stress disorder.” They’ll probably call security.

There’s a word for this attitude. Actually, there are two words for it. It’s fucked up.

13 comments:

  1. Three cheers for Chris! His pride and owning who he is are a GREAT model for others still wary of being "out" in the world. Some things are definitely harder for people who have less visible disabilities, and Chris' words and healthy attitude are such a wonderful reminder to all of us live who we are with pride not let societal stereotypes dictate how we view ourselves. Thanks for writing this!

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  2. This is good stuff, I have to hire people oneday myself...

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  3. Yes, thank you. Far be it from me to pick a favorite or best piece here. They just keep getting more and more wonderful to read. (I know, what you really want is hate mail. Sigh...)

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  4. Quite true, and so sad. Who could use a pick me up better than someone with depression?

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  5. My disease is brain cancer but sometimes the stuggle to stay alive overwhelms me and I sink into deep depression. It is amazing how folks react to my depression and the advice they give. Just shake it off, cheer up, man up, just trust in the Lord and so on. Intellectually I know where I am but some times my emotions can overwhelm my intellect. It is an illness that I am not ashamed to take meds for but the same folks that excuse me for having brain tumors they have no mercy for my depression. Strange stuff.

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  6. Way to go, Chris. Mad pride, baby. Thanks for posting this.

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  7. Mike,
    thanks so much for putting all this down, and Chris for agreeing, and certainly being braver than me. I thank Roger Ebert for pointing me here from Twitter. I'm a former chemist, who should have been an astronomer/physicist? Perhaps, but I've been tending toward art and writing. I have Bipolar, Schizoid PD, and mild (so far) MS, though of course it's more complex than that. I can still "pass" for "normal" most of the time.
    I noticed a long time ago how a certain proportion of healthcare workers would change dramatically the way they look at and act toward me only AFTER they saw the meds I take (for more severe mental illness), listed on my chart, and/or a diagnosis. It's amazing, the wild eyes, stealing looks from the side one gets, like they expected I might pull out a butcher knife and start goin' at it. Many of these people I'd had quite regular, even bubbly little conversations with not long before. It's amazing how well some remain subtle and hold in such reactions. It's admittedly more amazing how some seem not to have them at all, engaging you like an actual human.
    Most amazing/surprising to me of all is the attitude of (too many) psychiatrists specifically, who can look at and talk to you normally, but are generally last in order from psych techs and nurses, therapists, to psychologists in actually listening to you as if you have a validly competent and sentient point of view about your own disfunction. Within just a few minutes of speaking to a new Dr., one can see in the psychiatrist's eyes that a pigeon hole or two has already been filled, and that's it:
    Everything afterward is his/her strengthening the argument for what med or med change/addition you need, as always, on a permanent basis thereafter. Meds ARE useful, but they always try to push it to overkill, preferably with drugs still under patent. All this is especially so with kids, which I don't even want to address. Okay, except that, sitting in waiting rooms over the years with dozens of different parents dragging their kids to psych for the first time, the fucked up parenting (and usually true behavior cause) is obvious right there in the office; but I never saw a SINGLE parent who was refused meds to "dope up" the kid, ever…
    My point: they have their trained logical classification system, but unlike those BENEATH them in the mental health professions, they've reverted to the least amount of time spent to "diagnose"/judge a patient, nearly down to matching the medical worker in the unrelated field or random person on the street who accidentally learns your diagnosis, and instantly judges you accordingly. They aren't ALL like this, but the problem has been getting worse, not better, for over ten years, in my opinion.
    As to the public, I have, like a logical coward, been handling it by withdrawing more and more. My physical movements are getting worse, as are vision problems, along with my speech, mood swings and sometimes confusion. I often take longer in the store than a ninety year old woman with a bad hip, failing eyesight, and an inordinate stubbornness about reading labels. My problems are transitioning from reasonably concealable to newly obvious. I must steel myself and become more brave about lettin' it hang out, since it is more so anyway…
    Some of this has been my "deadly serious, technical, shoot me before I sub-reference again, à la Dennis Miller before something snapped inside and he just gave up, mode." I'm very thankful for my beloved computer so I can edit my dyslexic letter salads. You are a great example. Thanks for this. I can't give up. And you inspire me even more not to allow it even if, WHEN, I must be more public with it: as a half blind, mentally scrambled, anxiety ridden spaz who needs the shopping cart to walk upright, and hasn't a trace of heroism…
    Darren Hinds

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  8. Roger Ebert recommended your site today from the TED stage as one of the funniest online. I loved this story. Thanks for sharing it. My friend Nicky has a mental illness and I had her write about it in our ebook The Audacity of Humanity. You should be in my next one. http://www.scribd.com/doc/29345160/The-Audacity-of-Humanity-Ebook

    Follow me on Twitter @kyraocity

    Warmly, Kyra

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  9. I have schizophrenia. Nietzche may have said: schizophrenia is something that must be overcome; with bouquets of flowers or not; or have fun with

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  10. Yeah, fucked up is probably the best way to put it. Every time I mention having bad anxiety to someone they're just like "oh, come on, you're fine" as if it's not a real problem. Because clearly denial is the best way to respond in that situation.

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  11. I'm another Ebert refer-ee. Loving your blog and the comments above. I have major depressive disorder, or perhaps it has me. I feel shame about it, but I'm not sure why. Those of you who mentioned depression and people's attitudes, you left out "Just don't dwell on it."

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  12. A reliable person should never be underestimated.

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