Month: August 2010

Originally published at Two Women Blogging

“Aren’t you lucky! He helps around the house!”

Yup. He helps. Because picking up his laundry, cooking his meals, paying his bills, and raising his child is by rights my job. Of course, my laundry and bills and meals are my job, too. Along with the playdates and the grocery shopping and scheduling babysitters. But he helps! Wow!

“You must have trained him well”.

That’s it. Exactly. I held a chocolate chip cookie in front of his nose, and every time he washed a dish or put away a T-shirt I gave him the cookie, patted him on the head and said “good husband! Good boy!” until he wagged his, um, tail.

“I don’t how he can work and be ritual chair for the synagogue and still manage to come to PTA meetings and do the school drop-off and pick-up”.

Gosh, I wonder if it’s the same way I manage to work, be president of the synagogue, volunteer for a national professional organization and teach one night a month, and still do as many school drop-offs and pick-ups as he does. Oh, no, I don’t go to PTA meetings, it’s true – because they are always scheduled when I have evening office hours. Which means, of course, that I “must really miss being involved in your child’s life”. Right, because I never see her and have no idea what’s she’s doing, since I’ve already betrayed her by allowing her to be raised by strangers. Bad mommy. No cookie for you.

“You make more money than he does and it doesn’t bother him? He’s really supportive”.

Gosh, and I would have said I was the one doing the supporting the year he was unemployed, and the years he was in graduate school earning less than $10,000 per. But Sam was really open to sharing my salary, and bravely accepted the fact that he didn’t have to take an adjunct teaching job in South Nowhere just to pay the rent. He was incredibly understanding when I gave up my job and friends and moved across the country so he could take the job he finally did get. Yup, it’s amazing he could put aside his male ego enough to tolerate all that.

If Sam were writing this, he’d rant about the people who think he’s “babysitting” when he takes care of his own child. He’d tell you that men who can’t be left alone with their infants should be ashamed of their incompetence. He’d repeat the story about our first post-adoption visit with the social worker, the one who asked him what parts of parenting he didn’t participate in. He always says that at first he didn’t even understand the question, and then he got angry at the suggestion that he wouldn’t be a full part of parenting our child. And he’s sincere about all of it. He accepts housework as part of his responsibility, just like it’s part of mine, and he loves to cook as much as he enjoys building fences. He’d also point out the flip side of this assumption – that he’s somehow less a man because he “helps”.

But all of that serious talk might make male privilege visible. It might make women actually think that they don’t have to do all the housework, that their male partners could participate and the world wouldn’t come to an end. And we can’t have that. No making the patriarchy uncomfortable; wouldn’t be prudent. Besides, I have to go do the dishes now. Sam made dinner, and emptied the dishwasher, and fed the dogs while I was writing this. I am lucky; he’s kind and generous and he’s a damn good cook. But don’t tell me he’s helping.

I found my ex-boyfriend on Facebook.

Did you raise your eyebrows? What did you assume was going on? Do you think this is a good idea? How do you imagine this story will end?

Would it change your mind if you knew that we broke up in 1978?

I met John when I was 13; we dated briefly when I was 14 and then seriously from just before my 16th birthday until I graduated from high school. My mother still calls him “Jay’s first love”, and he was. He was also my best friend. We were friends before and after we dated, and when I lost touch with John in my mid-20s I missed him terribly. He was the first person I looked for online when I understood that such a thing was possible, but he keeps a deliberately low profile and I never did find him – not until Facebook.

I don’t know what I expected when I friended him, but it wasn’t what has developed over the last year. John and I have an ongoing Email conversation; we talk on the phone a few times a week; we check in with each other when we’re traveling. We’ve written volumes about what happened way back then – about the choices we made, the places we went, the ways in which we hurt each other and helped each other and taught each other and loved each other. We’ve dug up old photos and traded new ones. We’ve had lunch together, alone, and we’ve visited each other’s homes. We’ve even visited each other’s mothers, who both still live in the houses we grew up in. John’s mother started to cry when she saw me walk in the door. My mother keeps asking when he’s coming back to visit her again.

And many of my friends are astonished and skeptical. Not my husband – Sam is unconcerned – but my friends. I didn’t expect that, either. “Playing with fire”, they observe. “I could never do that”. “Are you sure this is a good idea?” “Are you still attracted to him?” Well, yes, actually, I am, but that doesn’t mean we’re going to end up in a hotel room together.

I’ve always been friends with men; until I was 35, most of my closest friends were men. Nobody ever seemed surprised by that. It’s clearly the idea of being friends with someone with whom I’ve had a sexual relationship that bothers people. I wouldn’t want to have sex with someone who wasn’t my friend. I’ve had three major relationships in my life, and I was friends with each man for a while before anything else developed. I’m monogamous, and I’ve been married for 25 years, but that doesn’t mean I haven’t felt attracted to anyone else. I don’t see attraction and friendship as mutually exclusive.

There’s a lot buried under the shock I hear from my friends. There’s a fear that sex is a potent, toxic force that can destabilize relationships, and I suppose that might be true if my marriage weren’t sexually satisfying. There’s also a model of hetero marriage in there that troubles me. My feminist, egalitarian friends don’t buy into the idea that men don’t talk – they expect to have intimate, emotional conversations with their husbands, just as they expect to share parenting and housework. And with that expectation comes the assumption that all of our physical and emotional intimacy needs are supposed to be met by our partners.

That’s a lot to ask, especially for an extrovert and external processor like me. I want to talk about everything. A lot. Sam needs time and quiet to sort out what he’s thinking and feeling. For years, I felt like there was something pathological about me, or something wrong with Sam, because he couldn’t meet my need for intimate conversation. After a lot of therapy, I’ve come to see it differently, and we both know that our marriage is better when I have some of my needs met by other people.

My life is richer because it includes both Sam and John. That’s the best benefit of all.

“Life isn’t a rehearsal” is one of my father’s favourite sayings — that and “better than a poke in the eye with a burnt stick.” (No, I don’t know what it means.) At every significant point in my life, I have received a phone call, voicemail, unsigned note, or email: “life isn’t a rehearsal.”

In the past, I have taken my dad’s words to mean that he more or less supports me in what I am about to do, even if he doesn’t agree with it. Now, though, they have a somewhat different meaning. My blogging moniker rather literally describes what I do. I am a professional dancer who uses a wheelchair (to dance in and for most of my daily mobility). I spend large chunks of my life in rehearsal or in training/dance class — somewhere between 16 and 30 hours a week. And I have finally come to see that even the most treasured of performances are not finished pieces of work; they are important rehearsals for the next performance. I am learning to live permanently in a state of process and enjoy it.

So, HI! I am Wheelchair Dancer; I am really excited to be here over the next couple of weeks. I usually write at my own blog; you can also find me on twitter (public stream @wheelchairdancr or webpage).

I don’t often give descriptions of myself, because I worry about the practice of rapid invocation. I am concerned that such short hands facilitate an unknowing assumption of similarity or alienness. “Black” seems like such a simple word, but it is such a complicated reality. “Disabled?” Another complicated reality. That said, I see that it’s kind of a Feministe practice and that it’s possibly useful for understanding situatedness. So, in the shorthand of labels, I am a middle-aged, multi-racial, bisexual, disabled woman who lives in the SF Bay Area and in NYC. I come from the UK, from a lower-middle/working class background; I arrived in US for a graduate degree, married a wonderful man, and stayed; I became a citizen about two months ago. That’s the short version, but please be careful: you may find that I use those words quite differently from you. As time passes, I think that the stories I have to tell will fill out these identifiers in ways that are meaningful for you and me.

And that brief thought brings me to comments. I subscribe to Feministe in a reader and don’t usually go to look at the comments on a post unless I am particularly provoked. In the course of my readership, I’ve frequently been shocked by the ways comment threads can go. I am going to use the feministe policy as my baseline and see how things develop. Some warnings, though. While I love challenge and critique, personalized attacks on other commenters will not be allowed through. Much of my moderation will be happening via cell phone (eek!), so bear with me. I will do my best to keep up, but please understand that if I am in rehearsal, that is a no cell phone, no internet situation.

If you need a single word for what I write about, intersectionality might be of some use (the link is to a post I wrote about intersectionality and some forms of internet feminism). I write about the theoretical issues arising from my daily experience or from something I’ve read. So, expect some stuff on disability, race, class, gender, sexuality, and dance.

I am looking forward to the next couple of weeks and to hearing back from a large community of readers. Should be pretty exciting.

Well, what do you know, it’s Jill’s birthday today! Have a day and year both entertaining and marvellous, Jill, for you deserve it. Alas, your cake will have to be virtual:

Leave your birthday wishes in comments.

So what exactly does a hospice medical director do? I know you’ve been wondering since you read my intro post. Or perhaps you’ve been wondering what I mean by “hospice”. If you read Atul Gawande’s piece in the current issue of The New Yorker, you read about the way hospice works for some individuals and in some systems.

“Hospice” is a philosophy of care based on the work of Dame Cecily Saunders who believed that care at the end of life should help reduce what she called “total pain”, by which she meant physical, spiritual and emotional suffering. She also did pioneering research in pain management and developed the approach that is now the standard for treating chronic pain at any point in illness. Dame Cecily founded St Christopher’s Hospice in London, which is a residential hospice facility. In the US, where hospice became a Medicare benefit in 1982, most hospice patients are cared for at home.

I work for a hospice agency that is part of a home care agency. We also have a small inpatient hospice facility, but over 90% of our patients are cared for at home (or in the nursing home or assisted living facility where they reside). Those at home are cared for by their families, in most cases, sometimes helped by hired caregivers. There is very little insurance coverage for that kind of care – we provide nurse’s visits and medication and equipment and assistance from home health aides, but everything else is up to the family. It’s a huge, gaping hole in the center of the American health care system.

So what do I do? Well, today was fairly typical. I dealt with scheduling issues for our fellowship program, prepared to teach tomorrow morning, met with the nurses and social worker for our daily status report, filled out and signed a pile of paperwork, and arranged coverage for my time off in September. And in between all that, I visited with the patients in our inpatient unit, and their families when they were present. I performed an examination and, more importantly, talked to the patients or their families about how things were going, and answered their questions. Why aren’t we giving IV fluids? Isn’t it cruel to let him lie there without eating anything? Is the morphine going to kill her? How much longer will it be? Should I call my sister, who lives out of state, and tell her it’s time?

We aren’t giving IV fluids because at this point the body can’t incorporate the fluid and giving it will cause more swelling and congestion, and he’ll have a harder time breathing.

No, I don’t think we’re being cruel. Your father isn’t awake enough to swallow safely, and we know from patients who have been awake at this stage that they aren’t hungry, and trying to eat makes them feel worse. As difficult as it is, the most loving thing we can do right now is not feed him.

She’s much more comfortable with the morphine, don’t you think? We know from our experience and what it says in the literature that patients treated with morphine don’t die sooner; in fact, they may live slightly longer. In any case, we want what time she has to be as comfortable as possible.

I never can tell exactly how long it will be. I think it will be a day or two, but I’ve been wrong in both directions. If it’s important to your sister to get her before she dies, she should come now. That would be a hard phone call to make. Can we help you with that?

One of the blessings of my job is that I don’t have to do this alone. Our social worker and chaplain and our infinitely skilled and compassionate nurses have those conversations, too. This is the core of what we do, these conversations, and I am grateful to have the time to spend my days in communion with my patients and their families.