Why “Star Trek” people are the best

You may have read my previous entries about how my sister and I (and our folks) are nerds. (Missed it? Here are the focused entries: Part 1, Part 2, Part 3)

Given that, you know I HAD to click on a link about Sir Patrick Stewart being awesome. He helped to surprise Dawn Garrigus, who has a serious degenerative disease, at DragonCon, with a personal meet-and-greet. Dawn has a problem with her mitochondria, which are nicknamed the powerhouses of the cell – as a biologist, my heart sinks reading just the name of the condition. I am so glad she got this chance, and the pictures make it look like the rest of her family join her in being huge Trek fans, like my family. My heart goes out to her, of course, but also to her sibs – of course.

…and yeah, it makes me wonder if I could ever ask the actor my sister only knows as Captain Picard to record a message for her, as “Data” and “Deanna” and “Wesley” all did. My dad now sometimes plays that recording for her (have I mentioned this? if I haven’t, oops! if I have, I’m doing it again!) on the phone. Through a creative use of speakerphones, I was part of one of these moments – I could *hear* that Lily was suddenly sitting totally still. When the message was over, she was just so happy. “Deanna called me on the telephone!” Thanks to the digital transfer we made of that file, we can make this happen again and again.

There are so many people who have been involved in the making of the Star Trek universe, and so many more who are fans in some way, that I know we can’t all be superb humans who never do anything weird or hurtful…but I think we do a great job trying to be the best we can be, among us.

Edited to add: This isn’t meant to be a passive-aggressive way of expressing that someone should pass this info along to anyone, for what it’s worth; I’m not actually ready to ask any other actors for help in crafting something for my sister. And, given that I already have done so? I can do it on my own. (If I were to make a passive-agressive – or direct – appeal to communicate anything? It would be just a “thank you.”)

You might take from this, however, that Make-a-Wish could be a charity to which you would donate…or not to tease a Trekkie in your life as much as you might otherwise. 😉


The “books for my sister” project

I mentioned not long ago that I’d made a “conversation” book for my sister. It’s a small photo book, which could fit in many purses and definitely in many small bags and backpacks, and it’s meant as something Lily can share with people she meets.

I added a second book: a book about my perspective, as a sibling, about my sister.

Things I included:
– where I live and why, how I keep in touch, etc.
– a guide to Lily’s alter egos
– a description of some family and friends
– suggested activities
– “creative” stuff (art, play jewelry making)
– “normal grown up” stuff (cooking, cleaning, exercising, doing volunteer work)
– fun stuff (hanging out with friends, going out, making phone calls)

And oh, the pictures! Pictures of Lily cooking. Pictures of her action figures, her leg braces, her favorite movies. Pictures of her in her wheelchair, going for a walk with my mom (I took that picture over Thanksgiving) and bowling with her friends and participating in family get-togethers. Pictures of the two of us together, as youngsters and as adults.

So far, I’ve gotten positive feedback from my parents, since I had the book delivered to them (and a duplicate, in case of damage to the first). I hope to hear soon whether the staff find it helpful. I mean, the entire goal of the project is to have a little bit of input into Lily’s life, but one that preserves my non-parental relationship with her and doesn’t require me to find a ton of time for her while I am finally getting settled in at my new job. I feel like I’ve seen a LOT of posts on SibNet about people who are their siblings’ custodians or guardians or otherwise legally responsible for their sibs, or who are basically excluded from caretaking, but not quite as many that are about the way I am with Lily. We are close and I want to be part of her life, but she has our parents there to make sure she’s okay on a daily basis.

I’ll let you know how it goes!

From the search terms

Somebody used this phrase in a search engine and found their way here:

i dont want to care for my disabled sister

…and I can’t let that one sit silently.

Anonymous person? I hear you, loud and clear. There’s a reason I live 3000 miles away from my sister right now. (Okay, a bunch of reasons, most of which have nothing to do with her – I have this amazing job that can’t exist anywhere else.) There’s a reason my mom told me to go to the college really far from home if I wanted to do that, and not feel like I had to attend the local college that was my second choice.

Of course, I ALSO do want to care for my sister. This stuff isn’t easy, and there are times when all I want to do is scream at the world that this sucks – just because I am feeling mixed up about my relationship with my sister, not because of her disabilities! It can be freaking HARD to love someone who has really dramatic needs, some days, and I think it’s maybe that much harder when that someone has been part of your life for almost all of your life. I absolutely sometimes feel resentful that I am “stuck” with Lily, just by accident of our birth as sisters. I do believe that just being genetically related isn’t enough of a reason to make one person responsible to another. (The continuing choice to be responsible to someone IS a reason to be responsible to someone, I think. And I happen to believe that we as a community are obligated to each other, but I think that’s only a little bit related here.) I know that despite my resentment and frustration etc., I myself have made the choice to be responsible to and for Lily.

So: many hugs, if you want them, Person Who Searched For That Phrase, and best of luck. If you’re reading this, you should also feel free to contact me about writing your own post(s) here, if you think that you’d like that. Same for anyone else reading.

Hello again, internet! I have a question for you!

I have not been blogging recently. I have, instead, been on vacation, moving to a new place, starting a new job, and dealing with intermittent internet. Now that my life has calmed down a bit, logistically, I am getting back into writing. I’ve got a post in prep about how moving for this new job has made me think about my relationship with Lily over the years since I’ve left home, and what that might mean for us going forward. Part of me likes that we get to be something closer to “normal” sisters, these days, although we definitely are not like a lot of siblings. Anyways, more on that later.

In the meantime, a question! As you know, I’m a scientist at my day job. As part of that work, I read what are called journal articles. For the uninitiated, scientific journals are where we publish the results of our work. (The remainder of this paragraph will give an overview of what that means; the questions are in the next paragraph!) They physically resemble something halfway between a collection of short stories and a popular magazine, like Vogue or Popular Mechanics, and ultimately kind of make a giant Wikipedia-like body of information about all sorts of science. In brief, we write a document that gives an introduction to what we’ve been doing and why other people should care, how it relates to what’s been done before, the details of what we did, what we found, and what we think it means. We submit those to journals whose audiences would be interested (I publish in journals focusing on evolution and genetics, while a friend of mine publishes in atmospheric and climate science journals), and editors decide whether they’re appropriate for consideration. Papers they approve get sent to other scientists, who evaluate and criticize the papers, and the editor takes that into account and then either accepts the paper for publication or rejects it. This is a pretty nifty system, because it means that we get reviewed by our peers – fellow professionals who understand what we do and can help ensure that our database of What We Know is as accurate as we can make it. (There are, of course, politics and personal issues that can arise, but hey, we’re humans, and we as a community do try to constantly improve.)

In my inbox today was a journal about how communication happens within and between cells. There was a tantalizing title about using a common anticonvulsant as a treatment for multiple sclerosis. I say tantalizing, because Lily happens to take this drug (valproic acid, under the name Depakote), and our mom has multiple sclerosis. As a geneticist, I’m (professionally) fascinated by how different outcomes of health and appearance are generated by the same basic instruction set (i.e., DNA) (my current project is even studying human DNA!), and personally, I wonder how my mom’s MS might relate to Lily’s epilepsy (and my fibro). So, my questions: when I find these papers, would you, my audience out there in the ether, be interested in hearing about them, and my thoughts about it? Are there topics that fellow siblings or others in the community or readership would like to hear more about, from a casual but professional perspective? This is non-trivial work, so it couldn’t be a super responsive or frequent feature of the blog, but I feel like I should put my training to use for people who could benefit from it!

Leave a comment or drop me an email and let me know what you think!

What do people see when they look at you? (1 of 2)

Author’s note: this entry needs a prominent disclaimer. This is MY story. I do not claim or pretend to represent anyone else with my words here. Well, except my sister, sort of, but I’m doing my best to transmit her perspectives. Part two of this topic will be focused on Lily and will be linked back here later and may not go live for awhile; this first part is allllll me. I’ve posted a lot of links, some of which are tangents from the words or sentences in which they are located, but all dealing with experiences of racism etc.

Oh, and I should alert you that there’s some profanity in this post.

A friend of mine and I were sitting in a park in a large city on a lovely summer day awhile back, chatting and hanging out in the afternoon heat. We were also people-watching. My friend made a comment about the various groups: some of them don’t see each other. Who looks at the homeless, and who actually sees them? Who looks at the chess players? Whom do they see? The young couple flirting near the fountain – do they notice the young woman with the toddler in tow? the hipsters sauntering by? the guy giving a dog water from a water bottle? (We both thought that the dog was cute.) This conversation we had, as we watched almost everyone, in a very deliberate way, helped me to solidify my perspective on this post (which I’ve been trying to write for months): all of us have the potential to be invisible to one or more groups of people, for reasons that range from benign to frightening.

The reason I want to write about this here is that I suspect that the reasons that most people wouldn’t fully see my sister act synergistically to make her especially visible, and not in a good way.

Here’s the thing: she and I were raised in predominately white, middle-class neighborhoods in the United States. We’re Jewish. We’re half Eastern European and half Native American. We’ve both got dark brown hair and dark brown eyes and are on the shorter end of the human height spectrum. Lily’s hair curls; mine is very, very straight. We’ve got lovely teeth, if you ask me (or our dentists), even if I needed braces. We’re both a little brown, in terms of skin color, although I often get washed out these days, since I’m at work all the time indoors and now have trouble with sunlight after my fibromyalgia diagnosis. (I’ve had people tell me that I must be Asian, Italian, and Russian, though, so who knows?) I’m heterosexual and cisgendered, and I suspect that Lily is, too, based on her behaviors, although it’s hard to be sure. We’re already in a position to be a little out of the mainstream – but, really, only a little, when you think about it – in the US. And of course, on top of all of this, Lily’s got many visible disabilities (and many invisible disabilities).

I can only fully speak about my experiences, and what I can see in Lily’s responses to the world. For myself, I’ve almost always felt like I was located on the fringe of whatever group I’ve been in – inside the group, admittedly, but not fully welcomed. At a minimum, only some parts of me are acknowledged while other parts of me are deliberately overlooked or just ignored. (I want to be clear that this is in a more important way than the ways in which we routinely favor one or more parts of ourselves over others in groups; when I’m teaching, I play up my inner scientist and play down my inner snarky commentator.)

I stick out for being half-white and Jewish in the Native community, which is largely Catholic/Protestant. Why, yes, when that student sang a psalm during the community end of year celebration? I was a little uncomfortable. I am Jewish amongst Protestants in many other work/school situations, and even more Other when those situations involve primarily Caucasians. I often stand out as female (and non-white) as a scientist. (Biology has more women than many other sciences, but my work involves more math and computer science than some subfields, so I’m still often in a minority as a woman.) Once, and at a scientific conference, the profile of my nose/face reminded someone of people belonged to one of the tribes of the Northern United States, so I guess I stand out as not white among some biologists? (My family hails from the southern half of the United States, for what it’s worth, and I don’t feel like naming the tribe at the moment because I don’t want to reveal that directly, publicly, in a place where I cling to some semblance of anonymity.) I’m not white – or not white enough – when I’m in some parts of Jewish culture. Like in that one synagogue, which amazingly had a special ed class in the religious school, but also was the place where my Hebrew school classmates told me one of my parents “looked Mexican.” (This was not meant to be a real insult, I think, but it sure as hell wasn’t meant to be flattering.)

Sometimes my background makes me somewhat more visible, in a fairly neutral way: in my current geographic location in the US, native Spanish speakers assume that I am a native speaker and address me in Spanish. Sometimes my background makes me somewhat more visible, in a not good way: I’ve been queried much more often since moving here about my ethnicity than at any other time in my memory, in a way that makes me feel like I can’t have access to a conversation – even for simple exchanges, like how much I have to pay the cashier – until I’ve been put in a box of some sort. (Needless to say, I am developing ways to deflect such interrogation.) There was one day in high school when I wore my hair in braided pigtails and a classmate told me that I “looked Indian”; I must have given this person an odd look before saying, “That’s because I am.”

Here’s the thing that makes me cringe the most: I always had this sense of being on the fringe as a child, and sure, people said and did racist and sexist and ableist things to and around me. But…it wasn’t until I hit graduate school that I actively felt those effects, with greater frequency and intensity than at any other time previous. It became personal, not just something that happened to family members, often in a hazy past, or to friends or to people in textbooks or PBS documentaries. A friend recently asked me why I’ve started identifying as a woman of color; I think it’s because other people have recently imposed that label upon me, and I’ll be damned if I let them make that a bad thing, or isolate it from my overall identity. Also: by the standards of the culture in which I live, I am. Because anything less than 100% white is almost always shifted hard and fast to Other in this country, normally with some label associated with it. (Which has been fascinating to watch in current American politics; our president is – like me – half and half, and yet watch how he’s chosen (had?) to talk about that in public.)

If you’ll allow me to elaborate on that point: I don’t see myself as white or Native or biracial or anything, really, most of the time – I am just, uh, me. But American culture has white as the default, so when I try to think about it, I add “Native” or “half-Native” to my description. I resent tremendously when I am forced to pick a single racial identifier, because there are key ways in which I am not really in tune with either culture, and because I am half and half, and I don’t consider myself to be out of touch with both cultures. (Sometimes I say “prefer not to state,” but most days, I feel like that’s not standing up for myself. YMMV.)

A recent way in which this came up was at a scientific conference that I attended not long ago. I applied for the “minority” scholarship, which covers registration for students who have never participated in the conference series before (which I hadn’t). I received it, and immediately felt torn…and continued to feel awkward until I realized that there were very few people of color in the assemblage. That was when it occurred to me that equally important to my job to be a role model for younger students is my role reminding the older generations that I am here, and that scientists can look and be different and still high achievers. (I did, in fact, win an award for my presentation from this group, because the work was good – it’s now published, yay! – and the presentation was good.) Interestingly, I was able to engage in a conversation with other (mostly young) scientists about most of the audience laughing at part of a presentation that discussed Native perspectives on the focus of the science, perspectives which conflict (sort of) with the “Western, modern science” perspective. And you can bet that I mentioned how uncomfortable I felt around some of the senior scientists when asked for feedback on the conference.

I have had to make some interesting judgment calls on this point over the years when filling out profiles for granting agencies. On one, I was allowed to check off as many boxes as I wanted, which was nice. What utterly pissed me off was that I was only supposed to check Native American if I had cultural ties to a tribe. No other identifier required cultural affiliation. I get that it’s sexy right now to claim Native heritage, and that a lot of (otherwise white) people try to do it in a really meaningless way – “my great-grandmother was a Cherokee princess!” is not just an inside joke in my family, it turns out. (See also the current point and counterpoint on Native identity at Racialicious, and political to-do about Dr. Elizabeth Warren.) But being Native still carries a crap-ton of negative stereotypes. (See also: the Native Appropriations blog, especially this essay on affirmative action, stereotype, and college.) Oh, and remember the incident I mentioned with another member of my local academic community? Turns out it doesn’t matter how I feel about my own genetic makeup: he saw me as an object, pure and fucking simple – a Native object that he clearly idealized rather than demonized, but an object nonetheless. Which is, I’ve realized, why I felt so threatened by him; I was fetishized by him, and if that fetish led him to inappropriate professional interactions with me, I did not trust him not to pursue inappropriate personal interactions with me. It was quite the lesson in how being objectified still hurts, even if the objectification comes from a place of wanting to admire or honor or express jealousy.

It’s an odd thought: people will treat me as white or Other, as normal or So Diverse I Am Special based on how they see me, and that may have nothing to do with reality or my own declared identity.

Most of the time, though, I get away with being white in a culture where whites are privileged; I think the single biggest choice my parents made in raising their daughters was to give us as much privilege and protection as possible in the face of a hostile world. And so I feel myself carrying privilege, and knowing that I have the privilege to know that, and that I’ve got the luxury to participate in the discussion of social justice and to treat it as an abstract, and I struggle with what that means, and what I can do about it. To quote a passage from the novel Friday, by Robert Heinlein, in which the protagonist, Friday, is realizing she acted out of anger:

[…] Anger at the whole human race for deciding that my sort are not human and therefore not entitled to equal treatment and equal justice. Resentment that had been building up since the first day that I had been made to realize that there were privileges human children had just from being born and that I could never have simply because I was not human.
     Passing as human gets one over on the side of privilege; it does not end resentment against the system. The pressure bulids up even more because it can’t be expressed.

I like this passage because I feel that being Other can be a tiring, frustrating space to occupy, especially for me, with my tendencies to anxiety and excessive dependence on external measures of self-esteem – at this point in my life, I just notice how people see me because I’ve gotten so used to noticing, you know? Even as I know that I’m extremely lucky that I can “pass” in most places (as a member – either majority or minority) and that I am not the target of physical violence due to fear, misunderstanding, or other negative consequences of a social structure based on assertion of dominance. I didn’t grow up with the poverty or stigma that afflicts too many of those who grow up on reservations, or in inner cities, or in ghettos or shtetls. People didn’t routinely assume that I’d never graduate from high school, let alone college or grad school, based simply on my skin tone or name. I’ve never been accosted for being in the wrong neighborhood (although this has happened to my parents).

All of this can, will, and has impacted my experience of looking for jobs, people to date, getting a driver’s license photo (yes, really), and a lot of other facets of daily life, both with me feeling like the playing field is tilted towards me and against me. (I told a friend of mine recently that I agreed with her that a program looking to have a visible minority face at the front of the classroom might not do well to pick me. Especially now, with my spending so much time away from the sun because of my light sensitivity! #tongueincheek Ahem. My point is: I can benefit from people deciding that I am Same *or* Other, and knowing that, well, it bothers me and makes me long for a world in which people happiness is openly accessible to every human being.)

But I notice when people see, or don’t see, me, because of these details of my identity. Or, like Friday, that once they know those details, too many people will treat me as Not Normal (i.e., will deny me privilege). And I know that this affects my beloved sister even more than it does me, because of her disabilities and her gift for reading people…but I’m going to try to tackle that in another entry.

My sister has disabilities, and is becoming aware of that fact

My recent habit has been to call my sister at least once a weekend. We mostly just chat aimlessly, comparing notes on food and rehashing Lily’s typified scripts. She usually has me say hello to whichever staffer is on duty at least twice, not realizing (or caring) that they have answered the phone and said hello to me then. We also do this silly thing where I will play songs from our young childhood that people have made into personalized videos on YouTube. (What can I say? I’m a sentimental type, and sometimes, Lily is, too.)

Today, Lily was reluctant to start the conversation, and had to be nudged to say hello. Once she did, she jumped to asking if I knew that she was born that way. I was caught off guard, and wasn’t quite sure how to respond.

It’s hard knowing what to say to her. I don’t know what it’s like to have a visible disability, let alone a series of them since birth. I don’t know why she’s suddenly so adamant about discussing these things now, as she nears the age of 29. My mom thinks she’s just become aware, in a new way, that she is different. Lily’s been meeting a lot of new people recently, and she’s such a good judge of character and so good at reading people that I’m confident that she knows when people are uncomfortable around her, even if they don’t ask, even if she can’t see them. She knows this, and she is…sad. She’s hurt, and uncertain, and she’s dwelling on it. How do I comfort my sister, who is bringing me her pain and confusion, when I don’t know what words will make sense to her? Her vocabulary is pretty limited when it comes to internal emotion, but it’s more than that: what help can my words provide? Can just telling her something – that we love her, that we are all born this way, that (as my mom is saying to her) she was also born cute – make her feel better?

It’s also a bit of a shock to me that I should feel so ignorant of how Lily has felt herself to exist in the world. Admittedly, she hasn’t given extensive clues that she has felt quite this way before, but I also feel like one of the downsides of seeing her as my sister means sometimes I forget that she’s a woman with visible disabilities. That we live physically far apart makes it easier to forget, to my chagrin.

I know life is unfair, but still: poor kid. I hope we can figure out how to help her cope.

Fun with language and food

We like to talk about food, in my family. We’ve joked for years about mispronunciations of my name and Lily’s that have ended with us acquiring food item nicknames. Mom and I will discuss recipes and foods we are growing, or trying to grow, in our gardens. Lily, of course, loves to join in our discussions, because it isn’t a conversation if her voice isn’t part of it. 😉 She also was affected, growing up, by our parents’ preference for public television programming. Mom would sit with us to watch The Frugal Gourmet, Julia Child’s various programs, Yan Can Cook, and more, and we’d often pick up an ingredient, technique, or recipe to try on our own.

Lily is an amusing assistant in the kitchen. She loves to chop things, for instance, but she’s a little too eager to eat what she cuts up. Our Thanksgiving tradition for a number of years is that I manage the turkey and Lily and I together make the ginger-spiced pumpkin pie.

Here are a couple of moments of amusement that we have shared with Lily over the years, involving food and talking about food.

* * * * *

During a recent phone call, with everyone on speakerphone, we were joking about foods that match our personalities. I had just made a rather rude, flippant joke about my father and Kind bars being a little bit nutty.

Mom: Lil, are you a nut or a fruit?
Lily: I’m a cashew!
(all laugh)
Mom, trying to draw Lily into a conversation: What does a cashew do?
Elysia: I think they curl up?
Dad: They cash!
Lily, clearly having misheard “cash” as “cats”, makes her very distinctive “SOMEONE SAID CAT” noise: Awwwww!

* * * * *

One night on the phone, I got to hear Lily request a piece of yam tempura, a first for her. She’s loved tempura for years, but she’s rarely tried to identify the food that was battered. I suspect she learned that yam was one ingredient because my dad and I often compete to find the yams first, as we both love them.

* * * * *

Lily currently exhibits what I can only describe as a verbal tic while she eats meals. She seems to need to vocalize frequently, from once per mouthful/bite to once every few bites. It’s a bit grating, honestly, since she frequently yells in an aggressive way, sometimes formed into one of her mealtime phrases (“Wait!”, “”), and sometimes just raw noise.

It was funny, though, when she was younger. Back then? She said, “Where are you going?” And yes, she often did this before every. single. bite, and it kind of got old. But she didn’t always need us to respond, and we enjoyed responding with childhood rhymes or aspects of the biology of digestion. (I was very interested in biology by the time Lily entered this phase.)

* * * * *

Many years ago, Lily went through a phase during which she refused to eat anything except cheese. One night, we were eating turkey for dinner, and Lily was putting up her usual resistance, demanding cheese. My father calmly handed her a slice of turkey, and told her that it was cheese. Without hesitation, she took a bite…and ate it all.

My first memory is of my sister’s birth

With my sister’s recent hospitalizations, both of our birthdays, and normal dreams of family and children, I’ve been thinking a lot about what I’m pretty sure is my first conscious memory: when my sister was born.

It’s possible that my earliest memory is not of my sister, but of simply standing up in my crib, arms stretched up, calling for my mom, who walked into the room to pick me up. That’s so vague, though, that I’m not certain when it happened. Not so with my sister’s birth, of course, as that has an associated date – a couple of weeks before my third birthday.

The first thing I remember is the way the overhead lights reflected on the waxed hallway floors. I was holding my father’s hand, and I was sort of chasing the reflections of those lightbulbs as I walked along.

I’m not actually sure whether my father’s mom was there, but I have this little bit of memory that she was, and one of my dad’s sisters. There’s about that much memory of my mom’s parents being present, too. But mostly it was me and my dad, and that shiny hallway.

My mom was sitting in a hospital bed, and I have zero memory of being invested in why she was there, but I remember being pleased to be with everyone. I was allowed to sit on the foot of the bed and to share some of the food tray that had been brought in for my mom…and I fixated on the tiny box of Cheerios. (It amuses me to no end that I apparently have had a lifelong fascination with miniatures, microscopic organisms, and assorted other small things – this is the first example of my thinking that I liked something because it was small!)

I wasn’t quite three years old at the time, so I imagine that I had learned how to pour liquids but wasn’t particularly good at it. The next thing I remember, I was trying to pour milk into the cereal, and my dad was telling me that I shouldn’t take it all – that Mom needed some, too. In retrospect, he probably was just making a comment (and, of course, having just given birth, my mother probably did need some nourishment!), but my young self heard it as chastisement.

It’s a bit sad that the most crisp moments of that memory involve shame, of feeling like I let my mom down, because my mom really is the best and I would have been aware of that even at my very young age. It’s curious to me that my first memory of my sister’s entrance into my life doesn’t directly involve her. It’s more than a bit amazing that this happened to be a day I remembered, given how important I would understand it to be so many years later – the birth of a sibling is no small event, and my sibling…was going to mean changes even greater than most. By that point in time, my parents would have realized that the doctors were either wrong or had not been entirely honest about the extent of my sister’s disabilities; her cleft lip and cleft palate would have been obvious, and I’m guessing the uneven bone growth of her skull would have been clear, as well as the hydrocephaly and possibly her lack of right eye.

My sister means more to me than I like to admit, even now, as I write this, enjoying my freedom from responsibility for her and my freedom from her irritating personality traits and our sibling rivalry. She’s my sister, and we have an unusual but fairly close relationship, and it seems really fitting to me that my conscious, remembered life began on the day that she was born.

My sister’s need for medical insurance makes life interesting

In a recent post, I noted that Lily had been hospitalized for the second time this year. She was discharged after a couple of days, thankfully, and was quickly on the mend. Just in the few days over which she was given antibiotics, I could hear a dramatic improvement in her health: she went from barely able to form words to miserable and whiny to distracted but happy. So it seems that the doctors’ administration of antibiotics was a good thing, although it worries me that I have no idea whether it was actually pneumonia or some other infection. (This may not matter so much to most of us, but Lily nearly died from a Salmonella infection a few years ago, and because her care is handled by many people, well, it’s important to try to understand how and why she gets sick.) (Note: I drafted this post before it turned out that she ended up contracting MRSA during this time period. I’m still not sure whether she became infected while she was on the antibiotics in the hospital, or if it was the initial infection; it may be something we never determine. I am simply thankful that she is recovering now.)

The “adding insult to injury” development in this story (…literally?) is that apparently my parents received written notification that the insurance company decided that this hospitalization was not medically necessary, which I understand means that they are unwilling to disburse funds to cover the stay. My suspicion is that Lily’s case got flagged by someone as causing too much expense, since this was her second hospitalization this calendar year. When my mother was explaining this to me on the phone, the emotion in her voice…well, she was extremely upset. She wondered how it was possible that they decided this, given that Lily was not only frighteningly lethargic, but also having difficulty breathing. (I asked whether the family could solicit a letter of support from the doctors, and she said that she had already written a response to the insurance company that she was going to send to the doctors and to her lawyer.)

When I listened to arguments about how to reform the American health care system (link goes to video/transcript) on Bill Moyers Journal, some time ago, this is the kind of pain I fantasized would be reduced or minimized. It makes me very, very sad and angry to think that my mother pays a huge fraction of her annual salary to maintain a high level of healthcare for the family, and that plan fails to cover an emergency-room based hospital admission and stay. Lily doesn’t get a lot of infections, and except for this year and that one Salmonella incident, she hasn’t been in the hospital for…what, a decade? Which isn’t bad for a blind woman with barely-controlled epilepsy, some dental issues, and some chronic skin problems. And it’s a little infuriating to think that my mother will likely triumph in getting the costs covered…after the insurance company uses up valuable time and money in resisting. It seems shockingly wasteful, if the real point of medical insurance is to give back the money that my family has paid in when something has gone wrong.

…hence my cynicism about healthcare in this country being, above all else, a vehicle to deliver profits. Which makes me that much more grateful to the numerous nurses and the somewhat less plentiful doctors I’ve known or encountered in the course of my sister’s life – people who have given really impressive amounts of love, attention, support, and dedication to their patients.

The sibling scientist life


Turns out that my sister’s recent adventures with bacterial infection – which have caused her to be taken to the ER twice in the space of about a month – are at least partly due to methicillin-resistant (or multiple-resistant? I was taught methicillin in my bacteriology class) Staph. aureus, also known as MRSA.

I’d much prefer that she have this kind of MRSA. I brought my Salmonella GiantMicrobe to her ICU room when she was fighting that particular infection. I was, at the time, in the middle of an experiment for my dissertation work that involved diagnostic tests for Salmonella, which made everything that much more surreal.

Hopefully that snippet – it’s too short to be a proper anecdote – conveys something of the oddity of being a sibling scientist. In general, parents and sibs of people with disabilities become experts about those disabilities, especially if they are severe and if our sibs have barriers to acting as their own advocates. We are experts because our sibs share their experiences with us, because we have witnessed them for large portions of our lives. My level of expertise includes a lot of that, but is much, much greater in the academic vein.

In keeping up with the professional literature – the results of studies that scientists have successfully defended to panels of peers as worthy of sharing with the community as new knowledge – I get headlines and summaries about all sorts of conditions delivered by email almost daily, and I read the full studies for some of those. Multiple sclerosis and epilepsy usually catch my eye, of course, but when someone publishes a study that explains speech delays or cleft palate, I also notice. Other malformations of the brain during gestation, what happens in weakened or unusual immune systems. One journal has reference material for doctors every month, blurbs that help them to quickly identify major disorders that are obscure or otherwise important to distinguish. My own research includes some study of how infections happen (one of my favorite topics is how pathogens influence hosts over multiple generations, and how they are influenced right back by the hosts), so I frequently read about particular infections, or have to refresh my knowledge about broad groups of organisms that can be harmful to humans. I also study genome science, and a lot of genomes that people study are pathogens.

So when my sister had a Salmonella infection, or now MRSA, I may know more than my parents do about what she’s facing, even if they’ve talked to the doctor and I have not. Which, in fact, happened tonight – my mom joked that I was the person to call when I explained to her what I’d learned about MRSA in bacteriology. (Namely: some varieties of MRSA really are “superbugs” that don’t die when treated with any of our antibiotics, usually with the exception of vancomycin, a drug that doctors try not to use so they have a last resort. But most MRSA varieties are more likely to have one or more drugs that they can’t resist, so normal antibiotics kill them, even if they can fight off some of our strongest or most rarely used drugs. I don’t know how accurate this still is – my class was a decade ago! – but the CDC and Mayo Clinic websites make me think my knowledge isn’t totally outdated. :-)) And it’s always a bit odd, providing info that MDs either don’t know or haven’t shared. It’s extremely odd to understand, intellectually, so much of what is going on with my sister’s physical health.

I also find myself frustrated, frequently, that I don’t know enough about my sister’s health and body, from a purely academic standpoint. I don’t have training in, for example, anatomy – bones, muscles, nerves, connections – so I don’t know what I can do to help her feel better after a seizure, or how to help her walk more confidently. (Her normal mode of locomotion at home is crawling, or using her walker/holding someone’s hand/etc., but she’s not good at walking.) Very often I feel like I should be able to use my knowledge of biology to help other siblings understand things that they aren’t being told, or that they’re being told but incompletely comprehend.

At the moment, the fog of depression and the pressure of a writing project at work are taking up my “coherent writing” energy, so I haven’t been posting a lot here, but I felt like talking about this interesting set of feelings here. It’s fascinating to me that my sister’s disabilities were a major motivation in pursuing science in my young life, but I also realized when I was young that I had to form a separation between work and family to protect myself from becoming self-loathing if I failed to make sufficient progress in helping my family with my work.