“For a long time now I have been aware that you are taking up more of my life everyday…”
– W.H. Auden, Letter to a Wound
Almost eleven years ago, something bad happened. One of my sisters got divorced, it was messy, costly, frightening, and everyone fell apart.
It devastated and consumed each one of us, at different times, and in our own ways. It was 10 years before things finally became sort of OK again. Still, it was impossible not to have changed how we would forever see one another, and the way we viewed the world. There was no undoing the damage and in the end, the unspoken truth that we would never be the same family we’d once seen ourselves’ as, was the hardest part to accept.
But onward. That was that. A bad thing had happened to me in my life. I had my story. I paid my dues in the land of the dramatic , sad and unfair. It was over, and now, bullet proof, I was going to be alright again.
And then it wasn’t. As it turns out, there is no cosmic balance sheet of adversity vs. good fortune. In 2007 I was diagnosed with Relapsing – Remitting Multiple Sclerosis. For months , I wouldn’t even say the words “multiple sclerosis.” (To this day,I still spell if wrong. I’m a really good speller, too) Maybe some part of me believed if I refused to acknowledge this thing, it would cease to exist.
But magical thinking aside , the downward spiral was beginning. Whether I chose to acknowledge it or not, things were starting to crumble. I was getting sicker and sicker. My diagnosis was officially changed to Primary Progressive Multiple Sclerosis, And I couldn’t shake the idea that it wasn’t fair. There had been a mix-up. Loss mounted upon loss. I was consumed with bitterness and anger.
My doctors provided me with support, encouragement and idea after idea. Courses of medical treatment that were constantly being tweaked to my specific needs. There was mindfulness meditation, plain old meditation, support groups, endless literature. I focused on the injustice of what I had to endure. The immobility, exhaustion, pain, weigh, depression and acute degeneration of my cognitive skills Everything was slipping away. Enough, I kept thinking, enough. ENOUGH!! I had had it.
There were the days, even weeks when slight glimmers of my old self arrived, ready to hit the ground running. But then I would suddenly snap back. It felt like a faint memory. A downgraded version. I was so conscious and fixated of the inevitable.
Publicly I portrayed a person who was handling it all with dignity and strength. “It is what it is. you do what you have to. You just keep fighting” or “I just thank god my children are healthy” were my go-to answers when discussing my MS with friends, acquaintances, even with my closest family. I so wanted it to be true. Appearing stoic was the most important thing I could accomplish.
But of course the real story was very different.
In short, I simply didn’t want to fight any more. I was done. Full of resentment, I was tired of picking myself up. And I was ashamed of my secret. Turned out that I wasn’t brave at all. I didn’t turn lemons in to lemonade. I was terrified, and resentful and swimming in self pity.
One morning in the beginning of October, a friend that I’ve known since the 8th grade called out of the blue. He was in the area, and would be at my house in ten minutes. Click. I panicked. I looked like the wrath of God. Uncombed hair, shabby, ugly clothes; it was as bad as it gets. I was mortified as I looked around my hopelessly disorganized clutter filled house. I just wanted to disappear. But I didn’t have any time for preemptive strikes. It got ahead of me before I could stop it.
He didn’t pretend not to notice. He just sat with me on my porch, talking a blue streak like always. We made each other laugh so hard we were wiping tears away. It is a fact of our friendship that we could endure both time and distance. We are both adept at adjusting the necessary boundaries that we make as we go. Still, I was struck by the notion that it we could still do it. I could still do it.
He didn’t stay very long. As we began the rituals of saying goodbye he stood up and looked at me. He looked me over. I felt excruciatingly vulnerable and exposed.
“Pray”, he said, finally “just pray and when you can’t pray, just say ‘Give me strength’. Say it over and over”.
As long I’ve known Adam, I have never heard him say anything even remotely spiritual or touchy-feely. Not when his father died, Or in those days after 9-11 when the list of people he had loved and cared for kept growing longer and longer. Or even just three weeks earlier – during the 3am phone call from New York Hospital to tell me he had a son.
I have been given almost identical advice by countless people. All i heard were words strung together. But on that day, sitting on my porch with Adam, I conceded. I don’t know why. I don’t spend too much time figuring it out. I just accept that those words became something. And I knew I was deciding to make a choice. To stop being scared of appearing cowardly. To stop the obsessive focus on appearing anything at all.
Let me be clear – I HATE this disease. MS is a thief. Terrible and sneaky. It has stolen so much from me; the things and worse, the people I hold dearest. I am so angry about the loss. Eventually I just accepted some degree of resignation. I am certain that I will ever be able to make peace with it.
But it’s changing. I’ve found out this teeny part of myself who wants a fight. And that is enough for right now.
Because, to NOT make the effort feels like a slap in the face to all the people who love me, offer their support and who give me credit for being so much stronger than I really am.
The blackness is still there. But, in tiny increments and only for a short time, light wins out. Pure, unfettered, dizzying joy suddenly explodes when my husband and I lay on the couch, watching “The Other Guys”. And that is enough. It has to be, because it’s all the only tools I have to work with right now.
So there you have it; secret’s out.
Within five minutes of moving in to my college sophomore dorm room, I had a an impulse to rip out the screen from the window and throw it out the now open . It resulted in an
inexplicable euphoric state of satisfaction. And that very quickly morphed in to the act of repeating the act with straight up trash. Every day. Several times. For the following THREE years. Passers by might swerve to avoid the following: 1/2 empty iced tea bottle, a clothing item damaged beyond repair, cans, tremendous lamp, overflowing ashtrays, or pizza boxes. At the time, I was not particularly troubled. Or ashamed. That’s just some messed up shit.
Last night Max, who is ten, and I were lighting the menorah. Lemme tell you I was feeling quite pleased with myself. Wasn’t I just the greatest
half jewish, christened Unitarian ever? But suddenly it dawned on me I was not, in fact, engaging in a some time-honored family ritual of faith. Nope – I was just delusional.
In all likelihood , my actions almost guaranteed to shame both the half me New England Episcopalians and half me Deep South Jews.
(oh yeah, I should add I was insanely high. Yes while we were commemorating this, the 2nd night of Chanukah. Sorry)
So I kinda had this image of them all.
German Jews are among the most prosperous, proud, even brilliant people but oh my god – just the ugliest people. It’s not subjective. I got the photos to prove it. And there was a lack of warmth, a suspicious nature to these people. Always convinced they were wronged by one another. A stinginess of good will or faith.
And then all those attractive Connecticut/Manhattan WASPS. A smidgen of deep-rooted,essentially bat shit craziness plus years upon years of lost beauty and greatness, instead ravaged by alcohol, recklessness, and depression. And the Grey Gardeny bat shit crazy too.
I laughed, actually I cackled, at some insane image of them collectively spinning round & round in their graves. Like the most terrifying, drunk, jewey rotisserie chickens ever.
So maybe that’s what happens when you grow up only associating the religion of your relatives with their character traits or appearance? What the hell else is there to judge it all on when you are devoid of any actual religious practice?
So Mazel Tov and Good Tidings to all you crazy, self-loathing, stubborn, bigoted and deeply-flawed motherfuckers. My ancestors. I get it. And I ain’t mad at ya…Seriously. Cuz Here we go again.
Something happened this morning that has had me in a state all day. My 10 year old son was invited over to a friends’ house to help his family tap maple trees to make their annual batch of syrup. Upon learning this, I saw my husband’s eyes light up, and I knew he was thinking what a cool family activity it was. He looked a little starry eyed, even. I was so pissed off I could hardly see straight. 30 years may have passed, but I am very familiar with tapping maple trees and making homemade syrup. I grew up in a family that did this. And a lot of other similarly interesting, cool activities that I hated every fucking minute of. And now the kid who didn’t appreciate all this stuff is now the sucky mother.
I think I would have made a good suburban housewife in the 1970s. If I had someone to take care of my actual house. Popping pills, spending hours just hanging out with friends while our kids were left to entertain themselves, and having it be perfectly acceptable to focus on “finding yourself” through whatever means necessary. Frankly, sounds pretty divine. And pretty familiar for a relatively short, but shameful time about seven years ago. That definitely didn’t go so well. Appears there wasn’t a lot of that pesky guilt, judgment, or clear consequence 35 years ago. Naïveté had it’s advantages.
Trust me. Bring this subject up at any playgroup within 100 miles, and you’ve got yourself two solid hours of conversation. Inevitably this always ends with at least three people saying “they just didn’t know back then” in a certain tone. Get someone stupid / irritating enough, and it might be followed by an wistful sigh.
I’ve played this one a million times. Mostly with people in their thirties and forties; each outdoing one another with the stories of various outrageous and ill informed misdeeds our parents were guilty of. Sending 11 year olds out to get cigarettes, the “child-friendly” parties where the adults got completely wasted and acted inappropriately. Really inappropriately. OK. But there is a steady, endless stream of stories that include consuming only canned food, parents’ suppressing children’s spirits in too many ways to begin describing. Sending them to their rooms and demanding they stop crying immediately. It goes on and on. They just didn’t know.
But the thing is, I do know. I “know better”. And I do all that shit anyway. I just know enough not to out myself. And maybe that’s why the maple syrup killed me just a little.
An occasional wake & bake before my eight year old’s football game? Yeah. The snow days I let my kids watch TV all day, without providing them a single modicum of culture. OK. Macaroni and cheese two nights in a row? If they don’t complain.
My own childhood didn’t have a single element of these parental misdeeds, as far I recall. My parents aren’t perfect (I only just discovered this — my psychotherapist told me), but they did everything my generation’s contestants in the good mommy contest work so hard at. And it wasn’t for show. They were the real deal Holyfield. My mother baked her own bread. My father took us to the theater and movies like “Double Indemnity” and Marx Brothers double. features. They never smoked or drank more than an occasional glass of wine. Their friends were children’s book illustrators, and philosophy professors at Columbia, and teachers who would only accept a salary of $1 per year because they came from well off families and felt the money should go towards the curriculum.
During the school year I wasn’t allowed to watch television more than a half hour a day. We spent every summer on our farm, where there wasn’t even a television. My mother took us to the library every week. She planted a vegetable garden that probably provided more than 75% of our food. She raised chickens and we collected their eggs every day. Their child friendly parties consisted of intricate mazes made out of cardboard boxes that they spent hours decorating so that each tunnel led to some of coolest shit I’ve seen to this day. We would write plays and perform the end of every summer for their friends, the guy from the corn stand, and the woman who worked at the dairy down the road who had 11 fingers (six on one hand)
Around the time I turned eight, well…that was all she wrote. All my friends with their twinkies, barbie dolls. The upper east side apartments (mostly between 66th and 86th streets. But east of Lexington) with entire walls mirrored. I was entranced. Their “Brady Bunch” re-run afternoons. Watching their glamorous parents get ready to go to studio 54 on a Saturday night.
I hated the farm away from the city. At the library I would check out only Archie comics, and save my change for the latest TV Guide so I could keep current even if I couldn’t actually watch. I threw a fit every time we had to go the museum of natural history. In New York I slept at my friend Julie’s house as many Saturday nights as I could. We could eat Doritos and watch Solid Gold, Dance Fever, The Love Boat, and Fantasy Island. Julie is still my oldest, dearest friend. Swear to God. Not for nothing, but she excelled laps around me academically and is now incredibly successful in her career. And yes; and a really terrific, present mother. Oh, and thin too. (though maybe best of all, excellently fun and reckless, should the situation call for it). I can only go by what I see.
I spent half my life wishing I could just have normal parents who didn’t care what I thought, and didn’t look like they’d been punched in the stomach every time I openly lamented about my misfortune. Enter Mark Twain. And although I grew to develop a true appreciation for even the tiniest detail my childhood, it didn’t change my inherent taste or sensibilities. At thirty three, I counted the days to when my daughter would be old enough to watch “That’s so Raven” marathons together. I have never missed a season of “The Real World”.
So, how the fuck did I end up in this town where it’s terribly chic to have your own chickens, and where parents whisper to one another about how sad it is that their neighbors allow their children to watch inappropriate movies? Entire afternoons discussing food co-ops and book fairs. And with all my past disdain for the esoteric, earnest adults that surrounded my youth; I know there is something inherently different about the people I am surrounded by now. Something inauthentic. Something vaguely mean spirited. Or, it’s entirely possible I’m holding a grudge.
Regardless, I do have the advantage of knowing how to respond to any dinner party conversation that comes up. I simply mimic the words I heard at age five. Rote. It works. But it’s still as painfully fucking boring as it was in 1976.
So here I am in suburban New England forsaking a career to be a stay-at-home mom. My husband is the one with the job in television. The career he had zero interest in, and wound up being uncannily good at. I’ve landed myself square in the middle of the worst of both worlds. Neat trick. Just how did I manage to pull it off?
I’ll be goddamned if I know.