Hello, world! Again! It’s been…far too long since I’ve posted here, but I’m in a new situation with my life and have some time to write again (good!) and am having a lot of sibling-related anxieties (bad!).
To recap the past couple of years: I worked as a contract-based teaching professor, during which time my own health was really wobbly. I had a sinus surgery, I did a six-month physical therapy regime after meeting a new rheumatologist, I had far too many infections, saw too many specialists, and have a new, if not-written-out, diagnosis of something being wrong with my immune system. That wrong thing probably means I will get sick more easily than others and will stay sick longer than others, but there’s not much we can do about it except try to convince my body that it’s not allergic to everything. That means daily Claritin/loratidine for awhile. I also ended my job – a combination of my life being difficult so far from family while fighting with my body and things changing at my job; I struggled with meeting some objectives and my contract was not renewed. My fibromyalgia pain is way less bad now; my migraines/headaches are way fewer. I’ve even lost a lot of weight! But I need to move a LOT to keep that up, and I’m not feeling super right now.
As many/most sibs know: living close to/with your sib can be really different than living thousands of miles away. So expect blogging about that.
In Lily’s life, well, things have been just as active. She had a vagus nerve stimulator implanted, to help control the seizures by sending tiny pulses of electricity to her brain, effectively – one description you often hear for the VNS is that it’s a pacemaker for the brain – and we can use a magnet that we wave over the device (in her front shoulder, basically) to send a pulse to stop seizures. Which sometimes works and sometimes doesn’t, and hasn’t been enough. She had to be hospitalized due to complications from changing medications, and had to have her emergency intervention medication added as a daily normal medication. Mom was so frustrated that she started Lily on the ketogenic diet, under the guidance of a specialist nutritionist who works with people with intractable epilepsy.
Expect many, MANY posts to come on the keto diet. Particularly since we’re coming up on some Jewish holidays that involve specialty foods that Lily can’t eat on it, and we’re trying to improvise, using them as a test before her birthday. No chocolate cake – no cake! – for the woman who loves cake, in our effort to stop the seizures. It’s hard math for any of us, but really hard for her.
Which brings us to now: I am currently unemployed, living with my parents, searching for jobs and considering going to school for a master’s degree in an area other than that in which I got my PhD. Lily’s seizures are smaller right now, but not at all what I consider controlled. Mom’s health is okay, but she’s exhausted from the effort of the keto diet (and work, and her own health, and running Lily’s house as well as the family home – I’m trying to help, where I can). Dad seems okay but he’s either aging in a new way or is having symptoms he won’t or can’t acknowledge, and mostly we just get into a lot of fights, because I perceive him as having given up or otherwise disengaged with a lot of what I’m trying to help Mom do for Lily.
And with that: I need to go get in some exercise time before I help make dinner. Lily’s coming over with a supported living staffer, for modified fish taco night. I’ll be back soon!
Just saw this on SibNet:
I am thrilled to announce that the Sibling Support Project has just launched the Sibling Stories, a blog featuring essays siblings by people with disabilities. Please share this announcement with others who may be interested.
As you may have noticed, there has been tremendous growth in “sib lit”–essays, articles, and books written by sibs of people with disabilities–during the past few years. On Sibling Stories, we hope to feature great writing by siblings of all ages.
Please visit http://siblingstories.blogspot.com/ to see our new blog. To launch Sibling Stories we are featuring essays by Allan Goldstein (“An Unanticipated Love”) and Emily Mario Holl (“Happily Ever After?” from Thicker than Water) and an excerpt from Eileen Garvin’s terrific book, How to Be a Sister: A love story with a twist of autism. More stories will be added in the days to come!
We hope you will visit and share a link to Sibling Stories with families and friends. http://siblingstories.blogspot.com/
I really hope the blog takes off! All of us siblings experience our siblinghood in a unique way, just as siblings in typical families, and I look forward to reading other peoples’ stories.
Despite the fact that I’ve posted about admitting that something is wrong and getting over being worried, I think I should say this explicitly: I was diagnosed with generalized anxiety disorder a couple of years ago and have been working with psychologists and psychiatrists (i.e., using both talk therapy and drugs) to treat it. This diagnosis came a few years after a diagnosis of an episode of major depression; I’ve been using therapy off and on for almost 12 years now, since my second semester at college.
I’m not sure whether this is something that’s especially common among siblings – maybe readers out there in the ether can provide information? – although I know I did participate in a survey about depression and anxiety in adults with SWD several years back, and got the sense that it was common enough to merit study. (Interesting memory: there wasn’t enough room on the paper form for me to describe Lily’s conditions, so the person who was conducting the study emailed me. I think she understood why I had chosen the language I had after I listed the major points of interest…) Honestly, I think I would have struggled with anxiety and depression were I an only child or if I had had typical siblings, although I imagine it might have looked different, because, well, I’ve been this way as long as I can remember. (It’s taken me awhile to realize this, but there are anxiety and depression and related conditions on both sides of my family.)
It would be very interesting to me, as a biologist, to understand how much anxiety and depression are due to intrinsic biological attributes of a given individual, and how much they are due to things like growing up with a SWD. (Otherwise known as “nature vs. nurture.” My own take on things is that, like just about everything else in biology, there’s some role for each in just about every observable phenomenon.) Perhaps I wouldn’t struggle so much with anxiety now if I had grown up without my sister’s epilepsy as a semi-constant reminder that Things Happen Unexpectedly. Perhaps, given my penchant for worrying over things like scientific and general illiteracy in the US and how to solve them and whether I’ll be able to hire undergraduate assistants who haven’t succumbed to societal pressures not to be smart, what would happen if someone broke into my parents’ home and killed them while I was away, whether we can actually protect ourselves against opportunistic microbes that live in plants, what would happen if a comet were headed for Earth, and then some…like, every night before I go to sleep, and this has been the trend for much of my life…well, you get the picture. I pretty clearly was never going to grow up to be anything but anxious. 😉
I mention this partly out of honest curiosity about what other sibs think about their lives and mental health, and partly because right now I can tell that I’m facing some sort of psychological distress that makes it difficult for me to want to post anything here (or pretend to moderate comments with what I consider to be efficiency). I’d much prefer to discuss the former. Popular understanding holds that women are more likely to be depressed than men, and that women are more likely to be caretakers than men. Do these ideas hold true? Do they have any relationship to each other? Does the fact that my sister has neurological problems say anything at all about what genetic influences have affected my own brain’s development, or was it just unlucky chance? Do other sibs feel like they didn’t experience anxiety or depression until well beyond childhood, or were there early indicators? My personal experience, as I’ve mentioned, was that I didn’t fully internalize that Lily and I weren’t quite like other sisters until after my labeling as a worrywart by my third grade teacher. I knew she was different, but really didn’t consider that I would be shaped by her differences until I had already reached adolescence, and in some ways, not until I had reached full-on adulthood. (As much as a lifelong academic can be said to have achieved this. Yes, that was an attempt at sarcastic humor.)
In sum: Lily has a whole huge list of disabilities and medical conditions. I have an anxiety disorder. She fusses about me, I fuss about her, and I write about that here. Ta-da!
I just read a blog entry by Snarky’s Machine, entitled “Why I Could Give Two Hot Fucks About the Loss of Daria.”^ Which got me thinking: what am I doing, really doing, to make the world better? Am I like Daria, complaining but just marinating in my privilege and not being productive, or am I saying something that needs to be heard? In other words, am I using this blog space for anything even vaguely related to activism, or just selfishly spewing words out?
I didn’t like the answer I gave myself: this blog doesn’t do much. Yeah, sure, it’s valuable to have spaces to express ourselves and spaces for people who feel isolated to find some connection. But mostly what I write about is roughly the equivalent of etching LILY AND I WERE HERE on some concrete wall or piece of pavement. Maybe some anthropologist will wander by some day and see my graffiti and use it to try and understand who I was and what my society was like, but really, the blog itself isn’t all that meaningful. (You knew I was a scientist, yes? Ha, well, yeah – that really is the way my brain wanders.) Although I firmly believe that siblings deserve to be heard, especially by bureaucrats who overlook us, I’m an exceptionally well-off sibling, able to sit back and ponder my life while other people are out there living theirs. This is both a good and a very bad thing: I’m in a place where I can wave my hands and shout, “Hey, over here! You’re missing something!” to people who need to hear it. I want to believe I’m able to make my privilege work for me, even if I’m surely not doing that enough. (NB: a more comprehensive discussion of my privilege, and my and Lily’s identity politics and social situations, is forthcoming.)
And, actually? I think that’s okay. Disability activism isn’t my calling, and frankly, despite my disappointment in myself saying this, activism in general isn’t who I currently am. When I devote my energies to thinking about how to make the world better, I’m more likely to think of things that apply mostly to what I do feel is my calling: I want to help train scientists who will do good science, and communicate that effectively, and I want to be sure that every student whose life I enter comes away from the experience being science-positive and more scientifically literate. It’s not a completely unimportant job, although it’s not exactly the least privileged space to be. I want to be able to make a difference in the academy, to make sure the Ivory Tower is – and is seen as being – a little less smug, less cold, less “old white guys,” and, well, less of a tower. (We can debate the ivory part later.) I think right now it’s okay with me just be here, talking about the realities and fictions of life with Lily, just to bear witness to her existence and how it intersects with mine.
As I get older, I’m more inclined to want to be an activist. Maybe someday sooner rather than later I’ll get there.
Edited 07 Jan 2011 to add: I’ve been meaning to return to this post for a few days, because I read something that made me feel less cynical about “just” writing this blog. This post had a huge impact on me, especially this line: We object to the conversation, and we object with conversation. Changing how people think about the world is no small task, but it starts small. It starts personally.
Lily was feeling like running her own schedule this evening when I called to exchange Sabbath plesantries with my family. She kept asking whether they could go for a walk, possibly to try to manipulate my parents into taking her back to her apartment. (She sleeps at their house every Friday.) For a variety of reasons, some we don’t understand, this gave way to the screaming she had been doing before that part of the conversation. Dad told her that the answer was no, because she was screaming.
Lily rejoined with, “The answer is yes!” And, y’know, repeated it a few times, for good measure. Then she chanted “yes” for still more beats. I was hard-pressed not to start laughing at how solidly she had challenged Dad’s authority, and with such clear language. Even if she was behaving poorly and wasn’t exactly in a position to demand good things. (Yeah, it’s got to be hard on all three of them that she’s got the stubbornness and drive for independence of both toddlers and teens, mixed in with the stubbornness that runs in the family.)
I’ve been struggling a lot recently with the question of my sister’s autonomy, agency, and voice, and my role in her life. One of the blogs that is in my RSS feed is FWD: Feminists with Disabilities.^ One of the points I have seen made there, and agree with very much: PWD have voices and can speak for themselves. It is our job to listen.
Which makes me wonder: how much of my writing her is violating this human respect? Does it matter that Lily can’t speak the words that she wants, or that she lacks the conceptual frameworks she needs to even access those words? Do all siblings have the same reasonable expectation of needing to be heard, even if their siblings’ disabilities may be radically different in scope and nature?
I mean, if Lily were only blind, I’d still want to be sure that my parents heard my voice saying that I wanted attention and love, just as any child would, and that Lily’s blindness shouldn’t supersede either her nor my general needs as offspring. I’d still want to be sure that I knew what the government expected of me as a sibling. I’d really freaking want society to know that their ill treatment, ignorance, mistrust, abuse, and fear of my sister affected me, too, even if those effects were incredibly different from the very direct negatives she experienced.
But my sister is not just blind. She has been deemed by the court to be incapable of self-care and self-determination. So I want my parents to know that I need and want their attention, but also that I need to be kept in the loop when it comes to legal, financial, and medical issues. (For the record, I have great parents, so I am.) I want the government to know that if something happens to my parents, I am the person who will be responsible for managing my sister’s care. And I do want society to know how their interactions with Lily affect me, but beyond the ill-effects of fear and prejudice: I need society to know that because of who and what they have declared her to be, Lily is reliant on me, and I damned well expect that I get what I need to be her advocate.
None of which really makes me feel any better about not being sure that my attempts at advocacy, sibling protectiveness, and vocalization don’t conflict with Lily’s rightful self-expression.
This is not something I will feel comfortable with tonight, or for a long time, I think. But I need to start talking about it, to confront my own fears, prejudices, ignorance, and privilege.
Okay, I wrote this awhile back and seem to have forgotten to post it. Day job and all that. So here’s the now-outdated post. Next up will be my take on the whole season, which has just ended.
I get that the show plays with satire and tries to poke at stereotypes. I kind of like that. But…please…explain to me what the ever-loving hell you’re trying to do with the character of Sue Sylvester? I mean, it takes a serious, serious internal inconsistency to allow a new recruit to join the cheerleaders basically just because she has Down syndrome, which your sister also has…and then to turn around and mock Emma for her behavior. Which we’ve heard her explain as a reaction to an adverse episode in her past, not OCD or a clear-cut phobia or anything else that’s a diagnosis. And now we’ve heard Sue call it OCD and Emma not deny it, but still.
I ask this because, frankly, I’m less and less comfortable watching the show. The way disabilities are portrayed? The way the people with those disabilities are portrayed? The relationships of the PWD? They’re a mess.
I vaguely feel as though people get treated as props on your show, and that doesn’t sit well with me. Take the latest episode – Laryngitis. Finn’s friend? Is just an object lesson for Rachel. Yeah, sure, you brought him in for the big finale piece, but seriously – he was a weird shell of a character. Please, if you haven’t yet, go read this blog post at FWD^ about television and problematic handling of PWD.
It’s really admirable to try to get PWD onscreen, and to try to be subversive in getting your messages about accepting yourself and being accepting of others out into the world. But I’m one of the ones who’s going to have to deal with people who assume that there’s some hidden blessing behind my sister’s disabilities, and I’m going to have to keep fighting to get them to listen to her voice, since I’m one of the few who listens to that voice.
I’m not the best person to tell you how offensive it feels that Quinn gets to tell Mercedes How Life Is. Thin white girl telling a fat black girl how to be herself? That is, trust me, just as bad as society at large telling Mercedes she is too fat to be worth anything, or too black to be worth anything. Thankfully you let the character be strong on her own, but Moral Of The Story Fairy Quinn just ain’t cutting it for me, folks.
Note from Elysia: this is a bit rambly and emotional. It’s not my best writing. Someday I may edit it. But I wanted to give voice to the emotion, so I’m posting it anyways!
My working understanding of Oppression Olympics can be summed up thusly: “No, no – I have it worse than you because of [insert reason here].” I’ve seen it on message boards devoted to idle chatter, and to blog comment sections devoted to social action. I learned to recognize it, and I try my best to avoid playing, because, well, other than possible minor catharsis or having fun fighting, it doesn’t accomplish much. Usually, it’s pretty easy to do this, because I’m normally just a spectator who can safely observe that the Olympics have started up and I can stay back.
But there’s the insidious way that I get dragged into the fray: the Sibling/Loved One With Special Needs Olympics. It’s terribly shameful. I don’t actually feel like I’m special or the most special because my sister’s influence on my life has been bigger than other siblings. The reason I think it’s insidious is that we siblings are pretty widely varied in our experiences, and it can be extremely difficult to separate the need for understanding and empathy from the need to prove that I’m really different and I’m special, or to test the limits of understanding, and to seek true empathy from People Who Get It. (This is complicated by the residual feeling that I have to distinguish myself in order to *merit* attention, because that was often how it seemed to work to my young self.)
This week’s Moment of Realization came when I was skimming a perspective piece published in Hadassah Magazine, the publication of a Jewish women’s philanthropic organization. (Why, yes, I’m Jewish, and a member.) Nina Mogilnick wrote about going on a ski trip with her husband and their son, Noah, who has autism. The average reader probably finished the story and was touched. I finished the story and threw the magazine across the room.
There were several reasons for this. One was that Ms. Mogilnick had even momentarily listened to the advice of Noah’s autism consultant, who had advised “extinguishing behaviors that set Noah apart from his peers.” Consultant, whoever you are, go f… *ahem* …please think carefully about that advice. It seriously sounds more like a teacher begging for a minimized classroom disruption, rather than an attempt to understand Noah and how his mind works. The singing that Noah’s mom described? Yeah, an irritation at school, but hardly the end of the freaking world. Try telling that to Lily, and she’ll escalate. Or fall asleep out of sheer boredom.
Also, Ms. Mogilnick? I’m glad to know you have two other children. Please, consider telling us more about them, and how their needs were part of this ski trip story.
But the more relevant anger, for this post, was deep, bitter jealousy. I have a single memory of trying to take Lily on a family ski trip when she was older than an infant and able to be carried in a backpack sling. That later trip…wow. We had a bicycle trailer; we removed the wheels and attached my youth skis to the base. We adapted the bike connector to attach to a parental waist. (I say “we” because I helped.) The contraption actually worked decently, although it took some getting used to. But it was a hell of a trip, from that perspective. Can you see, world, that I might envy this family? Noah *just* needed behavioral intervention. I don’t think it’s a physical possibility to take Lili skiing now, what with the seizures and the requisite thrice-daily anticonvulsants, and her blindness, and her mobility impairments.
I also headed out on my Oppression Olympics fit because Ms. Mogilnick lamented her husband’s near loss of his lifelong love of skiing to their son’s disability. Here I have to take a deep, deep breath. Because one of the biggest resentments I harbor is that Lily has stolen my parents’ lives from them, totally unwittingly and unintentionally.
My dad used to be a really accomplished backpacker, hiker, mountaineer, and skiier. He had all kinds of nifty gear in the garage and in closets that I loved to play with as a child. I think the last time he got to sleep in a tent was a decade ago, on a few day car-camping excursion he and my mom sneaked in while I was Lily’s assistant at a camp for blind teens. I have no idea whether my dad will ever get to explore mountains like that again. He has to stay close to Mom and Lily in case of emergency. I resent the hell out of that. I would have loved to have Daddy teach me to climb mountains, to be brave in a wilderness full of life. Instead, I worry that he gave the best of himself to sustain Lily and that nothing I can ever do in the future to help care for her (or Mom) will ever make up for that sacrifice.
Now, I know that we all do this willingly. I know that Mom and Dad love Lily unreservedly and do and give all they do because they love her. And trust me, they’ve both sacrificed and given and done a whole lot. And there are moments when I give in to the utter frustration that damned few parents in the world deal with a child as complicated and needy as Lily. Ms. Mogilnick, I truly sympathize with your horror at Noah’s screaming outburst on the airplane. I really, really do. But part of me hates the fact that a simple DVD is enough to stop your son from screaming, when my sister’s repeated ear tube insertions made the one pleasure flight we took with her hell for all of the plane for all of the descent, despite the best efforts of a really talented and wonderful flight crew. And I’m angry that you and so many other parents have children who “just” have emotional, intellectual, or other primarily-behavioral disabilities when my family would give a whole lot to be able to get Lily to “just” have inappropriate vocalizations. (She wet her pants again this week. She’ll be 27 in a matter of days, and she wet her pants because she woke up and couldn’t find the bathroom by herself because she went blind before she moved into this house.)
It’s not fair, and it’s not right, and I know your column couldn’t possibly have fairly shared the nuance of life in a family with a disabled child. And I apologize for my anger being unfairly directed at you. But to the larger world, I don’t apologize. The anger may in itself be unfair and not right, but it’s real, and I need you to know. So the next time you see me, or someone like me or like Mrs. Mogilnick, clearly straining for sanity and trying to balance a loved one’s special needs with society’s strict demands, think twice before you give us a dirty look.