Game of Thrones fans, book and show alike: this post DOES contain spoilers. If you are not up to date with your reading and show watching (Season 4, Episode 6), then read no further.
Also, this is very sad. You are warned.
Game of Thrones fans, book and show alike: this post DOES contain spoilers. If you are not up to date with your reading and show watching (Season 4, Episode 6), then read no further.
Also, this is very sad. You are warned.
I see the Google doodle today is in honor of Dorothy Hodgkin's birthday. They did a good job with the doodle. Very nice. Seeing that prompted me to think of another famous scientist in the world of protein structure, who it just so happens is also female - Jane Richardson. She is currently a James B. Duke Professor of Biochemistry at Duke University.
My time at Duke coincided roughly with the period between shortly after she'd been awarded a MacArthur 'genius' grant in 1985, and the year she was elected to the National Academy of Sciences, in 1991. During that time she held, as the Chemical Heritage Foundation notes,
a variety of “invisible” positions as a research assistant, nominally in a variety of departments due to her lack of a doctoral degree and the university’s rules, since discarded, against hiring a husband and wife in the same department.
It only took inventing Richardson diagrams, winning a MacArthur, being elected to the National Academy of Sciences, and the patriarchy's grudging dismantling of the "nepotism" rule, for Duke to find her suitable for the faculty. Well, she doesn't have a doctoral degree. So really, Duke was doing her kind of a favor there by granting that exception.
Anyway, eventually they recognize your genius, if you live long enough. Tough luck, Rosalind Franklin. Ladeez: you may not need to depend upon the kindness of husbands to help craft an "invisible" position for you, but do strive to be über-excellent, have good health, and longevity! Then someday, when the d00ds are wondering just why there are no really top-notch women scientists, yours can be one of the names that never comes to their minds!
I feel a particular kind of grudge against Duke for Richardson's years in those "invisible" positions. Although I was a biomedical engineering student, I was working on my dissertation with a biochemistry professor. So most of the time I was in the biochemistry building. I was trying to figure out who was who, what the pecking order was, and where I would fit in, if I could at all. People were still talking about Richardson's MacArthur, and what an amazing scientist she was. A postdoc in my lab who was helping me find my way around warned me not to bother her with any questions at all because she was so incredibly important and busy and besieged by requests from other colleagues and the press, that mere students should never cross her path. And then he explained that she didn't really have any sort of real position, but just kind of worked in this kind of not-faculty not-postdoc not-labtech not-student kind of thingy job.
So, my mind was blown.
The MacArthurs, I had just learned, were for geniuses. You could not apply for them; someone mysteriously deemed you worthy and you were so named a Fellow. It was incredibly prestigious. This woman had won one. She was a genius.
But she had no job. And the university did not say "Hark! Unbeknownst to us, a genius lives amongst us! Let us hasten to beg that she honor us by joining our faculty!" Her official job appeared to me to be something like "scullery maid" while, according to what people were telling me, she was doing genius science. How to explain the conundrum?
1. Her science was no good, but MacArthur, knowing nothing about science, got hoodwinked into handing out money to her. Everyone likes her now because she has money, and money is necessary to do science. Everyone wants some of the money.
2. Her science was okay, but it was mostly her husband's work, and the MacArthur folks got fooled.
3. See (2), but the MacArthur folks were making some political statement about feminism.
4. Who says the MacArthur awards are a big deal? This postdoc probably doesn't know what he is talking about. Who would give some big award to a woman who doesn't have a real job? Just forget about it, and your brain will stop hurting.
Not long after that, I found Women's Studies at Duke. Then a LOT of things that were murky and mysterious suddenly began to clear up and make a twisted kind of sense. I knew now why the genius was a scullery maid, and why even scullery maids who are geniuses are still not invited into the parlor.
The clarity was bracing, and yet enervating. Why on earth was I laboring away at my stupid little project? I didn't want to be a scullery maid. And yet I knew I was no genius, so if that was what genius got you, what was there for me? There I was, down the hall from a genuine genius scientist potential female role model, and all I got out of it was abandon hope, all ye who enter here. Ye are come to where ye shall see souls to misery doomed, who intellectual good have lost. No hope but blind life meanly passing, and Fame of the world ye will have none.
That was a bad time. This is why, I think, it's so difficult for women with some privilege to give it up and look at the patriarchy straight on. It's not like feminism is going to make you a cheerful, happy-go-lucky soul and give you tenure, fame, and cash. Cognitive dissonance and denial is bizarrely useful in a purely pragmatically functional way, even given the very high cost one pays to do so. But once you know, you can't unknow. Time to look around for like minds and foment a rebellion.
This is something I wrote three years ago but never posted. I decided to share it because mom is on my mind, and because I want to encourage those of you involved in elder care to consider keeping a journal. I did write some during my years caring for mom, but not regularly, and not nearly enough. I wish I could have all my time with her back in writing. Here is one bit I did capture.
You'd been mentioning the arboretum during our phone calls, and on my last few visits. What could you be talking about, where might it be? An arboretum, right there in the city? You said we went to it years ago, as Girl Scouts, when you were a troop leader. The woman from our town who took us there pointed out the spring wild flowers. Trilliums. I didn't even know you knew what they were. I had recently discovered them, through a garden excursion with my own local arboretum. And thought I was fancy for learning what you had long known.
But the arboretum. Through the genius of google, I found it, right where you said it would be. And I asked you if you wanted to go see it. Yes.
We stopped by the woods on a sunny autumn afternoon. The parking lot was empty. I got your wheelchair out of the trunk and should have known right away I was attempting something that wasn't sensible, something too difficult, something downright dangerous. The handicapped parking spot was the only thing about the arboretum that was accessible. Between the parking lot and the arboretum path there was a step - a small step, to be sure, but still a step. I didn't notice then how the pavement sloped a little downwards there, too. Nevertheless, you wanted, and I wanted for you.
I placed the wheelchair on the path, and helped you manage the few paces from the car to the chair - including that small step down. Not bad. The path itself was gravel - not great, but I managed. We rolled back and forth only a short distance, as the path quickly sloped downwards at either end. As stupid as I was that day, I wasn't stupid enough to push you in a wheelchair downhill on a gravel path.
We admired what trees we could see, read what signs and markers there were to be read, and then returned to the path entrance. And the little step, and that - oh, now I see it - sloping pavement. How in the world am I going to get you back into the safety of the car?
I brought the chair close to the step and locked the wheels, and helped you stand up. But that easy step up for me, from the level surface to the mildly sloping pavement, was for you a step onto a looming incline - you, with your weak legs, poor balance, and no handrails in sight. "I'm going to fall, I'm going to fall!" you cried out.
"No, no, you aren't!" I wrapped you in my arms and by sheer will alone I held you up. By all the laws of physics you should have been lying on the rough asphalt with a broken hip, autumn leaves plastered to a bloodied skull. Those are the images that flashed through my terrified brain as I steadied you, calmed you, helped you move slowly to the safety of the car just those few paces away. "How did she die?" someone murmurs at the funeral home. "Oh, it was the daughter's fault. Knocked her down on some godforsaken parking lot pavement and bashed her skull in." But you did not die, and we both live to drive off for dinner with your sister.
While I held you and did not drop you, and vivid images of your death flashed in my mind, this also came to me. There is a story of my infancy you have told me over and over and over again. How, as a baby, I was colicky, and you walked the floors with me every night, trying to soothe and calm me. How one night, holding me so long and so late, rocking back and forth from one foot to the other, so tired from all your labors of the day, you fell asleep standing up. You woke up just in time to catch yourself from dropping me on the floor and falling on top of me. I am certain, from the sheer number of retellings of this tale throughout my lifetime and the way you tell it, that images of my bashed and bloodied baby skull on the kitchen floor must have flashed through your terrified brain.
I want to give you all that will make you happy, just as you did for me, but my first job is to keep you safe, just as yours was for me. I am not an overworked, sleep-deprived mother. I should have known better than to try something crazy like an arboretum outing, and all on my own, too. No one gave me a manual for this.
My arboretum's paths are paved. I could wheel you around the whole of it. But you are not here. And it is not the one you remember, with the trilliums, when you were a Girl Scout leader, when your legs were strong, when I was a girl, when life stretched long before you, when a step was just something you stepped lightly over on your way to something else.
The universe has seen fit to kindly offer some recompense for years of suffering. I thought it best to take public notice. You want to reinforce good behavior on the part of the universe, in the hopes that it might continue down that path.
There were many years after my stroke when my diet was extremely limited. Everything, it seemed, was a migraine trigger. Not just little headaches, mind you, but crushing migraines that left me bed-ridden for days. My migraine-enforced food deprivations included two of my favorite foods: yogurt, and anything chocolate.
Years of botox treatments seemed to have a gradual desensitizing effect on my food triggers, and eventually I could eat a large chunk of the richest chocolate with impunity.
And then I discovered that my favorite local yogurt-maker makes chocolate yogurt. Yes. And it is too wonderful to be true. Except it is.
I rationalized: there is virtue in indulging in my hi cal treat. Yogurt is good for you! Locavore! Eat healthy AND save the planet! But really, delicious chocolate yogurt is just something the universe owes me. The universe rarely gets around to coughing up much of anything it owes me (or anyone), so three cheers for tasty chocolate yogurt. I have a quart of it in my refrigerator right now.
My wish for all the Zuskateers: may you be granted your own chocolate yogurt-equivalent today.
Let's start by acknowledging that I was not at SciO14, so obviously I was not at the impromptu/spontaneous #ScioSafe session. Had I been at SciO14, I am sure I would have been at #ScioSafe. I hope that I would have done a good job of listening and doing my part to help create an environment where people felt safe to speak up and share.
I have the greatest admiration and respect for EVERYONE who participated in that session. And I have great sympathy for those who might have wanted to be there, but didn't find out in time. It's too bad they couldn't have had access to such a session on the regular conference agenda, as many have noted. I do think it's entirely possible that what occurred in #ScioSafe could only have taken place outside the official boundaries of SciO14. Okay, in an ideal universe, the board of ScienceOnline spent the past year dealing head-on with their Boron-issues, got a lot of professional advice, and brought in some top-notch facilitators to help the heal the community. They had a plenary session in which they reviewed what happened, explained exactly what steps will be taken to change the culture, and outlined concrete plans for improved communication.
Roseanne Connor once said "I'm still waiting for chocolate air!" in response to sister Jackie's statement that she was waiting for Roseanne to say she was right. Organizations will be direct, effective, and rapid in their response to Boron-like disasters sometime shortly after we have chocolate air. They have to be pushed, nagged, prodded, dragged, "incentivized", and sometimes, reinvented, to make things better. Oh, you think you are hoping to just slide by this year with the "recent events" euphemism and some hand-waving in the direction of "boundaries" and then whoosh! back to "real" scicomm and on to 2015! Well, maybe. Except, no. ScienceOnline as an organization should be thanking its lucky stars that it has dedicated and passionate members who want to make it into what it should be - a welcoming space for everyone who wants to talk about science online.
It's easy-peasy to be just one more unwelcoming, non-inclusive, harmful kinda conference. Nobody needs to attend a Scio conference. They aren't part of professional organizations, universities don't necessarily support attendance costs, the eclectic mix of professionals, students, and academics thus far drawn to SciO have to be choosey with their conference dollars. Why go someplace where you know there are serious issues that are festering and unlikely to be fixed, especially if it's an informal sort of get-together? Might as well go to the usual unwelcoming places that are official career-builders. So kudos to the people trying to do SciO a favor and make it better.
If you haven't already, read the summary of the #ScioSafe session here at Doc Freeride's blog and give some serious consideration to the seven items listed in the document session attendees produced. As far as I'm concerned it's all pretty much a no-brainer, except for part of #5. I think the SciO org desperately needs to clarify what, if any, relationship they still have with Bora Zivkovic, and what, if any, they currently plan to have with him going forward. Then let the community
descend with pitchforks and torches decide how they feel about that. In my dream world, Boron is invited to be the keynote speaker at a conference on using social media for science communication but when he shows up, he is put on a rocket ship and sent to Neptune. I will admit that the rocket ship to Neptune is my preferred, albeit impractical, solution for dealing with all harassers. If SciO does its job right in creating a community that is truly welcoming and inclusive and safe, and that does not support or reward bad behavior, there will be no need to ban the Borons of the world. The community will make their existence so difficult they'll seek easier places to do their dirty work.
That's what I would like to see, beyond creating a community where people feel safe to report bad things that happen to them, knowing the perpetrators will be dealt with: I would like to see a community that makes bad actors less likely. I would like to see a community that plays a role in building better communities. Not just the stick, and punishment after the fact, but something like a carrot. Actions to prevent occurrences are a start, and then it would be wonderful to be part of growing a crop of folks who create inclusive environments wherever they go, because they have the tools to do so.
I think this is part of science communication, and part of what science online can and should try to accomplish. The American Medical Writers Association (AMWA) offers a rotating series of mini-courses that can be taken for accreditation, to develop skills that medical writers need. There are skills that science writers need, and of course there are places you can go to take such courses. But ScienceOnline could offer something no one else does. I would like to see development of a set of courses that are offered on a rotating basis, maybe for some sort of accreditation, if SciO becomes a member organization. Participants would learn how to foster inclusivity through communication. Here are some topic ideas:
1. What is inclusive language - and will it ruin my beautiful prose? (Subtopics to be covered include: his/her is so awkward!; you people can't take a joke; lame is just an expression!; what's wrong with talking about hard & soft skills?; we just want "the best and brightest")
2. What is an inclusive lab group and what communication skills does it need?
3. How do I write about a scientist who is a woman without mentioning her knitting?
4. Is it ever okay to mention the knitting of a scientist who is a woman?
5. There's more to February and March than George Washington Carver and Marie Curie
6. Got privilege? Leverage it as an ally online!
Those are just some off the top of my head ideas, I'm sure you people working out there in real science communication can think of better ones, but you get the idea. Now go forth, my friends, and get to work. ScienceOnline isn't going to invent chocolate air without your help.
I've been reading the comment thread on this post over at Whizbang! and I grow so sad. Poor Boron! Subjected to a witch hunt, tried and sentenced by an angry mob, when he didn't commit legitimate rape or even real harassment, which God knows is a horrible thing IF you have ever seen it, trust me. I mean, people have a right to their hurt feelings, but that doesn't give them a right to violate Boron's privacy, because if the topic of sex is in any way under discussion - say, in relation to a bit of science journalism - why then it is perfectly normal to describe at length how you like to get down and dirty with your partner, especially over coffee. There is no evidence! Of anything! No harassment to be seen! Boron is a victim! People are being silenced! The mob is scaring people from speaking the truth! Boron is just a poor lad with Asperger's from a foreign country where they do sex talk different and no one has asked him his side of the story about this lapse of good judgment! People are too emotional and over-reacting, probably because they were harassed, and so they see it everywhere and when you think about it, what is real rape anyway, especially in a marriage, or some strange foreign culture? A court of law would give a proper hearing to all sides. If only some journalist would investigate the true story. Why, oh why are you mean, cruel, horrible people making such a great and wonderful man suffer consequences for his actions? Can't you just let him do whatever he wants and let him be the judge as to whether he thinks it was harassment and he should apologize or not? What do you people want? It's like you think you have the right to define things and take actions. That is not how it works. Shut up and keep pulling the levers for the Great and Powerful Oz. Come back and show love for this great and good man. Don't be so crazy. Don't make us
kill you delete your comments.
It struck me the other day that I now have a small and growing elder care section in my personal library. One or two of these books might be of interest mostly to people who may soon, are now, or have recently been involved in elder care but most are just good reads.
Up first are the two that are most targeted to "users" - those who are caregivers and family members of elders. Caring for Your Parents: The Complete Family Guide by Hugh Delehanty and Elinor Ginzler is published by the AARP. This is especially useful if you are just starting down the pathway of elder care, and/or if you and your siblings have never had any discussions with your parents and/or each other about how the parents will be cared for as they age and become more needy. Blessed is She: Elder Care - Women's Stories of Choice, Challenge, and Community by Nanette J. Davis combines statistics and analysis with excerpts from first-person narratives culled from interviews with 61 caregivers of varied ages and backgrounds. Those mired in caregiving will recognize themselves in many places, and may find much to comfort them here.
Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler is both personal narrative and investigative reporting. She uses the story of her father and the pacemaker that kept him alive long past the time he wanted, and the quest to have it turned off, to explore the issues around aging, quality of life, and quality of death. I would recommend this to anyone.
In This Is the Story of a Happy Marriage by Ann Patchett you will find several essays about her grandmother and her dog. They are beautifully written; they will give you new perspectives on love, devotion, and loss; and I dare say they will comfort.
The Death Class: A True Story About Life by Erika Hayasaki is not about elder care per se, but it is about students, and their extraordinary teacher, learning how to live in the face of death. This one is a page-turner.
No More Words: A Journal of My Mother, Anne Morrow Lindbergh by Reeve Lindbergh is just what the title says. You could finish this book in a day or two with uninterrupted reading. But it is not lightweight. There is much to think about here. Anne Morrow Lindbergh was left debilitated and nearly wordless by a series of strokes, and her daughter Reeve writes about caring for her in the last year and a half of her life. It turns out that even the very well-to-do, with all the assistance one could want, suffer the guilt, anger, resentment, and despair elder care brings.
It seemed like everywhere I turned in these books, and often in life, people recommended or spoke of Buddhist philosophy and belief as helpful in negotiating life as a caregiver. One book I have not yet finished, but which came highly recommend to me, is Living Beautifully With Uncertainty and Change by Pema Chodron. Elder care is nothing if not packed to the rafters with uncertainty and change, so maybe this is as good a guide as anything the AARP can tell you about navigating the Medicare maze.
Two novels I'll add to the list and be done: Emily, Alone by Stewart O'Nan, which gives you the perspective of the elder facing life alone at home, companions and acquaintances passing away, children living far off. Wish You Were Here is sort of the prequel to this book and is just as wonderful. These are two of the best novels I've read recently.
If you've read something along the lines of the category of this post, feel free to drop a note about it in the comments. I'd love to hear about it!
I have a good friend with some chronic health issues. Our lives are very different, but we have much in common. We talk about how losing a husband or a career changes your identity and understanding of yourself. How the responsibility for young children or elder care grinds at you, day by day. How illness turns what was once a pleasure into a source of dread.
We both had our social circles, liked to eat out. Then health issues made that impossibly difficult. At my worst point I stopped eating out altogether; she went down to two places whose food wouldn’t harm her. I have since been able to reintroduce many foods into my diet and can eat at a wider variety of places; she is still mostly limited to the two, so that’s where we go when we go somewhere.
We both know what it’s like to try explaining complex dietary restrictions. “Peanut allergy” and “gluten-free” are in the general public vocabulary, but “onions give me migraines” and “I’m eating raw or plain food” are not. A few weeks ago we went to see a favorite band, had dinner at a nearby Asian restaurant. She asked for steamed vegetables and brown rice. It was the work of several minutes to convey this as a serious request. Usually Asian restaurants are safe bets for her; everything is to hand and it’s no big deal to throw a few steamed veggies on a plate. Why it wasn’t this time, who knows.
And then there is the discomfort your dining partners experience. They will range widely across the menu and enjoy their meals with gusto. They can’t help it, and you don’t want them to. But it makes them feel bad, when they look at you. Sometimes your dining partners are not just discomfited, they’re angry. Why don’t you just try a little x? Are you sure you can’t eat it? Do you have to be so picky? It’s so difficult every time we go out to eat! Eventually you just stop going out to eat. Except to your two places, with the handful of people who understand.
We vent together – food, our once taken-for-granted good health now gone, the responsibilities weighing us down, the isolation we experience. One day she said “People say when God closes a door he opens a window. I’ve been waiting for my window for a long time. I try to keep hopeful, but I just don’t see it. I just keep wondering, when am I ever going to get back to myself, back to [the person I was before marriage and children and divorce]?” Here, dear Reader, was the time to blow sunshine up her ass with a cheery “keep hopin’ on that window!” Or not. I chose not.
I said that some experiences we have change us so profoundly that there is no going back. That person is dead and gone. We are now some new version of ourselves, and it is not the person we were planning to be. The door was one-way. The view from the window is strange. We can look over our past, and should be generous to the person in those memories. But we have to grapple with this and now. Quite often, it is not a lot of fun. Not that there isn’t fun to be had, but there is also the realization that life never lets up for one damn minute, till you’re dead.
Obviously a stroke, lost career, and years of severe migraines have had their effect. But it’s the past six years of elder care that beat a lot out of me. I know elder care made me more aware of disability issues, even helping me see my own chronic illness in a stronger light. I know it made me value kindness more highly than ever. I know it gave me the gift of long hours spent with my mother and in-laws that would otherwise not have been. But I am also a duller, slower, person with an even narrower life than before.
I am slower in part because I am older – the difference between 45 and 51 is real and I feel it. The slowness is also because the work and stress and worry of the past six years tired me out. I am disinclined to work really hard at anything. I am hoping spring and the garden will have some reversal effect on that.
I am a duller person. It takes me longer to read. I can’t always follow what’s going on in a commercial – there’s a lot of flitting from one image to the next so fast a dull mind gets lost and quits. I am more forgetful. I struggle more for the right word or name. Some of this is due to natural aging and the effect of menopause and also no doubt to the effect of so many different meds mixing in my body. But I know that part of it is due to the long, steady drain of elder care on my cognitive resources.
And my life is narrower. The intermittent but unpredictable debilitating migraines had taken away my work connections and most of my social life. We had moved from one state to another. The few friends I once had in this area had themselves moved away. Children and church are the two other main conduits to social interactions, and I had neither. I was just taking baby steps to build a social life for myself without the usual resources of work, family, and church, when elder care arrived on the scene. Elder care is a chronic unpredictable set of minor and major disasters plus daily repetitive tasks that are always urgent and never completed. It gradually swallowed up more and more of my time. It occupied my mental and emotional energy even when I wasn’t directly engaged with it. It became my new job, family, and church all in one – just without the social contact.
In this and now, life will still not let up for one damn moment on the slower, duller version of me. I am aware that, if I’m lucky, I have about thirty good years left. I would like my slow, dull ass to do the best it can with them. The view out my window right now is blank. Apparently tilling and planting of the earth are required of me, if I want to enjoy the view.
When I was a very young girl, some thousands of years ago, one of my favorite books was Go Dog, Go! Each reading brought the measure of delight at the end, when at last the dog party commenced, and the boy dog finally admitted he liked the girl dog's hat. Today I'm wondering if the dog party isn't very much like what dog heaven would be, if there were a dog heaven. I hope so.
I am a cat lady, but in the past two months I have made the acquaintance of two dogs I rapidly came to like very much. And just as I settled them into my heart, I lost them. I grieved a little along with the authors, a perfect demonstration of the paradox of fiction. I had never met these dogs in real life, nor even their owners. But their death touched me, and I could sense the hole their loss would leave.
Brandy was a side-story that crept into one's heart slowly somewhat like the snail, in The Sound of a Wild Snail Eating. She was the faithful companion of the long-suffering author Elisabeth Tova Bailey. Rose I came to know more directly in the various essays wherein Ann Patchett recounts her life with that beloved dog in This Is The Story Of A Happy Marriage. (I highly recommend both books, and suggest you order them from Parnassusbooks.net if you are not so fortunate as to have a local independent bookstore.) I came to know about the death of each of these dogs, and now I want them each to be at the dog party. I want them to meet each other, Brandy sporting a most fabulous hat, Rose offering effusive praise, both of them heading for the wild dog tree party, finding their favorite foods, trading stories of their owners' lives.
In "On Responsibility", Ann Patchett writes:
Is is wrong to tell a story about your grandmother and your dog in which their characters become interchangeable?
and by the time the one finishes the essay, the reader concludes with the author that the answer is "no, and please give us more."
I do not believe in dog heaven, or regular heaven; but sometimes, I treasure a fond hope of my mother welcomed at the Pearly Gates by Jesus's open arms, reunited with my father and brother, with all the chocolate she ever wants to eat.