Saw Slumdog Millionaire yesterday, and my head is swimming with images not to be forgotten soon, if ever. I tend to read a fair number of novels about life in India, but while writers like Vikram Seth and Rohinton Mistry paint vivid pictures of human suffering, they’re far more disturbing on a movie screen, super-sized and in brilliant color. Director Danny Boyle must have a toilet fetish; the scene of Jamal diving through a shithole to escape the locked outhouse inevitably brings to mind Boyle’s Trainspotting junkie, diving into the toilet to recover a heroin suppository—except that this scene, in keeping with all things Indian, is even more graphic and disturbing. I suppose it’s meant to be funny; the audience laughed at the sight of lumps of beige shit dripping off the naked little Jamal. Blecchh. Slumdog Millionaire is a rich and engrossing film, though, and it served my purpose, which was to distract me, and my son, from his latest seizure episode (I say episode, by the way, because Daryl always has more than one at a time). This happened Monday and, par for the course, we’re still dealing with the fallout.
It has occurred to me that the reason I get so worked up about the way people perceive and treat me is that this too is a form of distraction, a way to avoid thinking about the real issues raised by these incidents. This time, for instance, the seizure has no known etiology: he’s been faithfully taking his meds, he’s not sick with a cold or flu, there was no precipitating catalyst such as flashing lights, stress, or overexertion. It was what they call a breakthrough seizure, and I believe it’s a first for Daryl. Are there more of these in his future? Will he need more or another kind of meds? Did he suffer more brain damage this time? Ever since he was hit by a car in 2003, some additional damage seems to occur with every seizure.
Whoops! I didn’t mean to focus on those real issues—I meant only to illustrate the point that I require distraction from them. One way I distract myself is by the surrounding drama. I’m furious, and not for the first time, about the way medical personnel treat me as Daryl’s mother. They seem to think I’m overprotective and intrusive for asking questions or offering suggestions, that I’m (s)mothering a grown man. But don’t people act as health advocates for others? Aren’t health care critics always yapping about the need for patient advocacy? Adults serve as advocates for their parents, or spouses, or even for friends, all the time. Sick people can’t always advocate for themselves.
Given all that, I ask you, why did some lowlife telephone operator in the ER feel perfectly justified in saying to me, “I thought when you said ‘my son’ you meant a little kid. This is a 43-year-old man—I can’t give you any information without his consent.”
The man in question was lying in my bed nearby, nearly comatose, sleeping off the previous night’s assault on his system. The information I’d requested was the level of anti-seizure medication in his blood, but I couldn’t even find out if they’d done the test. It would’ve been nice to have that information to take to Daryl’s regular neurologist tomorrow.
Another, even less relevant, source of distraction: Daryl had a bag of my laundry with him that mysteriously disappeared when he had the seizure. Every single pair of socks I owned was in there, as well as my one pair of sweat pants. While you’re all buying Xmas goodies, I’m buying socks. Which leads me to yet another distraction: the ways in which disability separates me from you.
It’s been said a million times that disability divides people, that it isolates the person with the disability and his or her family. Most people think we’re talking access, that isolation comes from an inability to get places where so-called able-bodied people congregate. Build ramps and everything’ll be okey-dokey. That’s not the half of it, sister. After this seizure I stopped responding to email from my regulars: their messages are full of shiny happy Xmas preparations, and I have trouble with that shit even in the best of times. I do not want to hear about the parties and festivities you’re all going to next week while I’m schlepping to the neurologist and the dentist (Daryl chipped a front tooth either during the seizure or when he fell on the street.)
It may sound like I feel sorry for myself, but I swear I don’t, not the way I did when I was younger. Remember, I read a lot of Indian novels. I’ve developed a broader perspective on suffering. If I feel sorry for anyone now it’s Daryl and people like him. And Jamal, the Slumdog Millionaire. I am, however, angry. I get especially angry when people talk about their happy holidays and think I’m a Grinch. Or that I’m negative. Or bitter (see previous post). I am, but hey, I got a right.
Besides, I do make an effort. It’s the first night of Chanukah, and I’m making potato latkes for Daryl and me, and giving him the first of three small presents. I’m baking muffins for my neighbors. We’ll go to more movies. But there won’t be any partying or people on the agenda. I just can’t fake it anymore.