Three cheers for Wil Wheaton!

Note: I drafted this…before today. And then life happened and I didn’t finish it and never posted. Just saw Wil’s speech pop up again, and realized it had to be finished. This is a little less sibling-focused than some of my posts, but know that some of my anxiety defffffinitely comes from being a toddler and seeing my infant sister’s seizures, which I have more often shoved aside than faced. Depression is my anxiety’s shadow. Let’s get to the story, then, shall we?

Remember when I told you about how my sister and I are Star Trek fans, and kinda nerdy? Today I am remembering that, with so many emotions.

Today a dear friend of mine sent me a link to Wil Wheaton’s blog, where he posted the text of a speech he gave at the National Alliance on Mental Illness. I struggle with anxiety and sometimes depression, and the resonance was so strong, and my emotions felt so big today, that it took me three attempts to finish reading it. It was just…a lot. Relief at seeing my own struggles in better words than I usually pick. Shame that I am so ashamed so often. Sadness that my fight is feeling so much like a fight, and not like a “good” healthcare situation where you go to the doctor when you’re sick, and you get treatment, and you are better. Anger that it feels like this is ANOTHER burden, on top of the fibromyalgia, on top of the immune system weirdness that will 99% probably never be pinned down, on top of being a sibling and loving so fiercely someone who needs so much, on top of the normal human struggle to live and care for loved ones of all ages. I just got a bad health insurance situation resolved, mostly, and just yesterday, so I’m hoping I can spend some time on the phone on Monday setting up new care providers and all of that fun stuff.

Including a therapist.

But let me tell you more about meeting Wil Wheaton. Yes, go read my earlier blog entry, if you haven’t yet.

When I went to the con where he was appearing, I was in the throes of awful grad school stuff. I was at the tail end of my dissertation, my advisor was not the best fit for my training needs, I was not getting enough support – I literally waited for feedback on one of my chapters for nine months. (Years later, we think my health was already collapsing some, because I got a bad infection during my second year of grad school, and my immune system was probably starting to spiral into weirdness that culminated in the fibromyalgia.) And most grad students facing the wrapup of their work and the writing up of the dissertation are anxious, stressed, or otherwise not in a good mood. I’d known I struggled with anxiety since my first year of college, so I was seeing a therapist (who predicted that I had something like chronic fatigue, just without any pain). I was struggling.

And I just wasn’t as open about Lily then as I am now. I hadn’t figured out how to NOT make a big deal about her life, you know? Because she is, in a few ways, so different from everyone else. She can’t be treated like a typical sib, because she isn’t typical. Talking about her needs sometimes seems to feel almost proactively defensive – making a thing of it – but not talking about her makes me sometimes feel like I’m hiding her, which isn’t true.

So Wil Wheaton asked me about myself a bit, and I told him – with my anxiety on full display, in retrospect – that I was trying to finish my PhD. And he was gracious about it. He didn’t say anything about the fact that one of the books I brought to be autographed was from a used bookstore, and I hope he knows I would have bought it new, but I just couldn’t afford it then. He told me that he was sure I’d finish my PhD.

Those small moments are such powerful things, aren’t they?

Now, knowing Mr. Wheaton to be a fellow member of the anxiety club, that memory feels so much stronger. A moment in which a stranger said that I would get there, get through it – and not JUST a stranger, but someone whose work I had admired, a celebrity.

I want to thank him now, more than ever, for helping me fumble my way through that day and the months that followed – being brave enough to share Lily’s story with her heroes, being brave enough to be awkward, resolving to finish my degree. Now I’ve been a college professor, using that degree, and tried to give back, to help students and friends and strangers, via this blog, sharing tips about coping with anxiety, and maybe – if I’m lucky – being that person to speak, in a small moment, to help even one other person who’s struggling.

Do you need help coping with emotions or with mental illness? Check out these resources – some paid, some free, some low-cost. All links open in new tabs or windows. You are not alone. WE are not alone.

Captain Awkward: look, if you’re not reading, you’re missing out – can you really ask for better than advice from a filmmaker/film professor? Join the Awkward Army and be less alone in the fight against your jerkbrain. If you’re looking to be a good ally or to support a friend/loved one fighting mental illness, come read about that, too.

Captain Awkward:  Guest Post: 14 Free and Low-Cost Mental Health Resources

Captain Awkward: How to locate low-cost mental health care in the US and Canada (Guest Post!)


The Trevor Project: help for LGBTQ youth

Resource list from Lifehacker

Feeling anxious now? Try square breathing.



Elsewhere on the web…

When I was in college, I went on a date with a young man who told me he was impressed by something I did: I held the door of a cafe open for a woman who was pushing a baby in a stroller. I explained to him that it’s something I’m more aware of, because people don’t tend to hold the doors open for me when I’m out with my sister…you know, with me pushing her wheelchair. I think that’s enough to explain why I want to share this post from the humorous blog Not Always Right.


I don’t like to give attention to people who do mean things just to be mean or to get attention. I will make an exception here, sort of, to link to an open letter to commentator Ann Coulter, written by John Franklin Stephens. Go! Read it now!


You should totally also go read this piece entitled Black and White Vernacular in American Sign Language, which I came across thanks to Racialicious.

Updated to add one!
I have some problems with this piece, but I think it’s worth sharing, anyways: The Disability Trap from the NY Times.

One bit that made me uncomfortable was the suggestion that people who are on SSI should have to try to work first, before benefits would be disbursed. That’s all well and good for people who can work and want to work – and the model the authors discuss (formulated by Richard Burkhauser and Mary Daly, per their reporting) would have been great for me when I was super newly diagnosed with fibro – it would suck for Lily. Don’t get me wrong, the SSI program as it stands doesn’t help my sister as much as it could. It’s stressful for my family that Lily gets a bigger benefit to rent an apartment than she would to pay a mortgage. (Maybe someone can explain to me the wisdom of preventing someone with medical conditions that won’t improve, ever, from having a home that isn’t immediately jeopardized by a loss of income. Yes, Lily is somewhat exceptional. Still, I am her sister, and sometimes, I get to care more about her than anyone else!) I hope that if SSI reforms are made that they can accomodate the range of what disability is, and how disability shapes life for each person dealing with it. (I should acknowledge here that the NY Times authors do say something about this in their piece. I did have a small moment of squick, though.)

It’s just a strange situation: people who want to work are limited by the red tape of the SSI program. People who can’t work are limited by the red tape of the SSI program. In a time when there’s a lot of noise about communities taking care of their own and a shrinking federal government…well, let’s just say that I worry for my sister.


Work has been interesting and intense lately, and has taken up a lot of my brainpower, which was already diminished by weird weather in the wake of my nasty cold. More stories will be on their way soon!

Signal boost: petition for more closed captioning

Watch the video and sign the petition for increased closed captioning here.

RIP Maurice Sendak

I just read that Maurice Sendak passed away.

This is the memory in my mind this morning: reading Outside Over There, by myself, or listening to my mother read and describe it to me. Recognizing, somehow, a kinship between myself and the big sister, Ida, both loving her baby sister enough to set off on a rescue mission…and having sufficient frustration with the baby to let her get stolen by goblins.

Thank you, sir, from the little girl who found your books haunting and gorgeous, and the woman she grew up to be, who still finds your books haunting and gorgeous.

Recommended reading

An essay by Sarah Eyre, who experiences seizures as part of her multiple sclerosis, and whose friends have responded in a variety of ways.

Go read it!

My sister has disabilities, and I might, too

It was about a year ago that one of my friends sent me a link to the “Dear Sugar” column. I spent the next week or so reading through the archives, crying with relief and sadness and understanding at many of the letters and replies.

Not so long ago, the featured letter was sent by a person who fears developing cancer, as her mother did. (Yes, yes: go read it!) Reading her words, and the reply from Sugar, triggered a huge storm of emotion in me.

a) I know too well where the letter writer is coming from. I’ve had my share of mortality-based panic attacks. I’ve struggled with discussing with partners the future I know my sister’s care will mean. I’ve long feared that something would turn out to be “wrong” with me, too, especially since now all three of my (nuclear) family members have chronic conditions diagnosed. And I’ve been in the process of seeing a bunch of doctors because my health has been so awful recently…more on that later.

b) As a biologist who has spent a little bit of time thinking about cancer, in the context of evolution and the evolution of disease and in the context of genetics, it saddened me that this person was convinced that because her mother had cancer, she would, too. Most cancers that I know about aren’t strictly inherited, even if some of the physiological traits that can let cancer happen are strictly inherited.

c) I even felt a little indignant! I was frustrated that the letter writer would assume that because her mom was “destroyed” by cancer that she would, too. Not to be too nerdy, but in the movie version of The Fellowship of the Ring, Aragorn is torn by the knowledge that he will be tested by the evil of the ring…and Arwen reminds him that he is Isildur’s heir, not Isildur. (It’s been a little while since I read the books; I remember the same idea being communicated, although maybe in a different way?) Even if we share the tendency to weakness, the pains of our parents are not automatically ours.

I was so sad for the letter writer, and realized that I know enough cancer survivors that I could accept cancer as a serious problem, but not one requiring, so to speak, an unhappy resolution. I don’t know how the letter writer’s life will turn out for her. I wish her well, and I hope that her fear is never realized. Biology is complicated and messy, and so is the human experience.

My own story is starting to show some of that complication.

Those doctors I mentioned earlier? The last one I saw was very confident that she knew what has been going on with me for most of the past year: fibromyalgia. I’m still pretty deep in denial that this is the case, even as I am finding incredible relief in having an explanation for what I’ve been feeling, and in finding that I’m not alone, even in what I thought were my strangest symptoms. It was a shock, and it’s taking some time to internalize. (I am no longer the typical child! Weird!) It will take even longer to learn how to manage my life going forward, and that fear makes me cling even harder to my denial!

It’s a strange weight to carry, this idea that because our loved ones have suffered at the whims of their bodies that we must, too. I suspect that I am not the only sibling of someone with disabilities who has felt that way. When you find out that you’re not just living with a superstition, but actually facing your own major diagnosis? It’s a lot to process, even if what you’re experiencing is unrelated to what your loved ones face. I don’t have my sister’s epilepsy, or cranial malformations, or her high glaucoma pressure, although perhaps we share something that has affected our neurons. I don’t have my mother’s multiple sclerosis, or my father’s diabetes, or my grandparents’ alcoholism. And although I am still reluctant to claim it as my diagnosis, fibro won’t keep me from being a good sister, and it won’t prevent my being there to help care for her when my parents are no longer able to do that.

Signal boost/reminder: shop and support the Sibling Support Network!

Since the day after Thanksgiving is the “official” day people here in the US open their holiday shopping season – mostly those who celebrate Christmas – I want to remind you that there’s a way to help the Sibling Support Network earn some money: shop in their Amazon store.

Here’s the info from the director of the network, Don Meyer:

Dear friend of Sibshops and the Sibling Support Project,

If you’re like me, you will start thinking about gifts for loved ones in the next few days. And, like me, you may prefer shopping online instead of heading to the mall.

If you are one of the millions who shop at Amazon, I have a favor to ask: Will you support the work of the Sibling Support Project by beginning your shopping by “entering” Amazon through the Sibling Support Project’s “Astore”?

You will get the same great deals you always get at Amazon, and Amazon will donate up to 6.5% of the purchase price to the Sibling Support Project!

Here’s the website for our Amazon Astore [Note from Elysia: link opens in a new window!]. Please add it to your favorites or bookmarks.

Once you add something to your shopping cart and proceed to checkout, you can then wander anywhere on Amazon. (And, if needed, you can yank any item out of your shopping cart prior to purchase.) Any eventual purchase made within 24 hours of entering the Astore will benefit the Sibling Support Project. 

Thank you for your support! Here’s the link again.

One last thing! If you’d like to celebrate the holidays with a direct gift to the Sibling Support Project please click here. Those who give at the $100+ level get a free copy of our newest book, Thicker than Water: Essays by adult siblings of people with disabilities!

Wishing you all the best,

Don Meyer

Director, Sibling Support Project

PS—In case you were wondering, we never know who buys what on our Amazon Astore, so we’ll never know you bought grandpa a subscription to Playboy.

PSS—If you think this is a cool way to do good while doing the inevitable holiday shopping, will you please share this email with others?

Echoing Don’s request, if you know people who like to shop using Amazon, please let them know about this link! SibNet, SibKids, the new SibTeen, the workshops, the books – these are all resources that have helped so many of us siblings, directly and indirectly. It pleases me to be able to help share a way to support a great organization…and in these uncertain economic times, to do it in a way that doesn’t place a huge financial burden on people who want to help.

Signal boost: Celiac disease awareness

Some of y’all will remember my relating how Lily and I are nerds (and I’m maybe a little bit of a Wil Wheaton fangirl). Well, it turns out…Wil also is a sib: his sister has Celiac disease, as does their mother. He just posted about this, and about the new website his mom started to help raise awareness for CD. (Check out the comments on Wil’s blog for some website recommendations from Celiac patients – recipes, support, etc.)

In addition to wanting to promote that, I also wanted to share one of those not-quite-perfect response moments I too often have:

It can be extremely frustrating to have a loved one following a specialized diet because their medical conditions demand it, when the rest of the country is seizing upon it as the newest and bestest weight loss plan. (We can talk at some other point about my feelings and my understanding of the science of fat and obesity, but remember: I guest posted at Shapely Prose.) I wouldn’t at all be surprised if a lot of people end up losing weight and/or feeling way better if they reduce gluten in their diets, given how poorly we seem to understand the diversity of human responses to gluten and the preponderance of gluten-filled foods in this country – it’s quite possible that this fad diet will help people learn to cope with milder problems processing gluten. (I think my mom’s been having this problem; I had wondered if it were possibly related to her MS, since autoimmune diseases are just fun like that, to my non-professional mind: if your body is attacking itself, who’s to say what the fallout will be?)

So this little petty voice inside of me insists on snarking: gluten-free is a fad diet, even if that’s not how it started or its most crucial role and people are going to blithely skip about, reveling in their weight loss miracles and totally ignoring the fact that they’re benefitting from a diet that is, literally, a matter of life and death for a lot of people. Kinda like the Atkins diet; total fad diet, and yet based on the ketogenic diet that is the last resort for a lot of people with otherwise intractable epilepsy. You know, the way my sister’s may be headed. It can be ridiculously irritating to observe, and I know I’ve gotten mad more than a couple of times because of the waves of popularity of the Atkins-related diets and the lack of awareness accompanying that about the people who need such diets for therapeutic reasons.

Maybe someday I’ll post about food in more detail here. I mean, Lily’s diet has to be fairly carefully externally regulated, given that her anticonvulsants affect her appetite, and my parents are being super careful with her in the wake of her nearly-fatal Salmonella infection. Both of my parents have had their gallbladders removed, Mom’s got MS, and Dad’s got diabetes. The requirements and preferences of any of us are likely to run afoul of someone else’s requirements and preferences, which is not such a delicious development. (Hey, I just realized why I am so insistent on eating what I like when I want these days: I’m fighting what feels like the inevitable lack of food freedom. Sigh.)

/end snark and fussiness

I know people with Celiac and have known people with gluten and related sensitivities and allergies for years, but clearly not enough people are in the know. So congrats and thanks, Mrs. Wheaton, for the new website, and thanks to Wil for sharing!

Quick note: blog business, short entry

Blog business: I deleted the “share your story” page. I had been hoping people would post there, but nobody has, and hey, if other people want to join the party, I can always make a new page. For the record, I am interested in guest posts and facilitating conversations here. Some of us sibs feel too much like we’re alone or isolated in some way, and safe places to talk about sibling issues can help alleviate that (or so I tell myself).

I’m playing around with the visuals for the site; I picked up a new theme that I’m going to try out for awhile. Which is probably much more amusing for me than for you. 🙂

Something else that amuses me: people seem to be finding their way here while looking for information about the new Lady Gaga album, apparently titled “Born This Way.” So says the statistics page for the blog, at least. Not at all what they’re looking for, I’m sure, but hey, I think the title’s kinda cool, and so is Lady Gaga, so if nothing else, those searches have been informative for me. Coincidentally, one of my sister’s friends is a huge fan of hers, and had been planning on buying my sister a Lady Gaga album as a holiday gift. (Not sure what came of that.)

Short entry: My family is moving forward with testing out some other independent living programs for Lily, since her contract with the program she’s been with for two years has been terminated. I’m not asking too many questions right now, because I perceive that this adds to the stress of the situation,

Here’s what just occurred to me a few days ago: what I had hoped to be a stable, long-term care plan for my sister…wasn’t. As I navigate the world of internet dating sites and contemplate what will come next in my career, I think a lot about where I’ll end up living next. Presumably, I’ll be pursuing a tenure-track position, so it’s a place I’ll want to stay indefinitely, or at least for a good stretch – probably 10 years. I had been sad to think that, academic science jobs being what they are right now, there was a good chance that I’d end up living somewhere far away from my sister, keeping me out of the loop of her daily life…or that I’d have to be exceptionally lucky to get a job at one of the schools that would let me live near her. It never really sank in that her long-term care might shift from one program to another more rapidly than I might change jobs, and that the idea that I could possibly move her to where I am living was a viable option. Or, to be more accurate, once I had realized that there were long-term independent living programs and that Lily was doing well in one, I had dismissed from my mind the worry that it wouldn’t last. (Oh, well.)

Of course, moving her to me wouldn’t be as easy as just moving her. My parents, after all, won’t want to be away from us. Happily, that’s a bridge that won’t have to be crossed for awhile, but hey, it’s on my mind right now, given that I’ve recently been prompted to think about my career.

Topics converge: rape, safety, sisters

It’s been an odd week.

As a self-identified political liberal, I’ve felt myself somewhat in thrall: multiple American liberals (particularly Michael Moore and Keith Olbermann) have suggested that the allegations that Wikileaks founder Julian Assange sexually assaulted two women are spurious – because his organization has been releasing classified documents to the world, and this is a way for the embarrassed governments to retaliate.

I believe that it’s possible for someone to be a good person, or a person who does good and/or important work, and to do really awful things. (Like, say, Thomas Jefferson: a person who helped craft the founding documents of the United States – and yet, a slaveowner, who apparently fathered children with one of his slaves.) I worry that for prominent people to claim that these rape charges are trumped up or faked just to exact some sort of retribution – when – makes it harder for rape victims to feel like they can report their rapes to the authorities and know that they’ll be taken seriously. (See also: what Sady Doyle and Kate Harding have written. I know people who have been sexually assaulted, and I feel like – for their sake – it’s important to share posts like this.)

So: rape has been in the news a lot. Then why am I mentioning that here, on a blog about growing up and growing older with a sibling with disabilities? Because I am a woman, and because Lily is a woman, and this is a news issue that’s important to women.

I’ve had also a situation at work. A man – senior to me, but without direct authority over me – at my institution has been acting in a way that threw up red flags: trying to get my attention by repeatedly coming to my office and sending me emails, without saying why, over a period of weeks. This week, he finally provided a reasonable-sounding statement about why he was seeking my attention; it wasn’t prurient or an abuse of my work hours, but was a somewhat invasive, unprofessional request. My boss knows about it, and is fully supportive of me, but I still feel afraid that this isn’t the end of the situation; frankly, I feel uncomfortable posting this. But I’m doing it…because it is my story, and I want my readers to know why, this week, I am worried about my ability to be a good, protective big sister.

Because in the meantime, ohhhh, in the meantime, also playing out this past week: my sister’s staffing is still in flux. My parents are worried that one of the people who is supposed to be a last resort caretaker if scheduling holes appear…you know, the way they are a lot right now…well, this person is male. My parents don’t feel comfortable with a man being primary caretaker for Lily. We have no evidence of abuses by people in this program, but the level of trust needed to allow someone to help Lily is very, very high. Among other things, she can’t use the toilet unassisted, can’t dress herself, needs physical manipulation to navigate a lot of furniture; there are just too many opportunities for abuses, uncomfortable situations, and accidents. And we know that men and women with disabilities have experienced sexual and other abuses. Thankfully, it sounds like there are mechanisms in place in this program to ensure my sister’s safety, and her legal advocate is aware of the situation and is in agreement with us.

I’ve been friends with people who have studied feminism much more formally than I have for years and years now. I’ve heard them refer to this idea of rape culture, and while I vaguely sensed that I agreed with the idea, it wasn’t something that I had ever internalized fully. Until this week, that is, when I could almost physically feel what it would mean to be pinned down by someone who was continuing with intercourse despite my attempts to make him stop (which is one of the scenarios that I understand Mr. Assange has been accused of perpetrating, as described in a news article I read). I could feel it without any desire to empathize, without any conscious effort to interpret the news story – it just happened that I was suddenly shaken by fear. And it seemed too easy to believe that it would be hard to report an attack and hard to have it be taken seriously…

It is terrifying to think of myself as needing to be one of the guardians of my sister’s safety, in a society where we imagine danger from strangers but know there’s danger from associates, when I myself feel unsafe, when I am living far enough away that I don’t know what’s going on in my sister’s life to be able to be an effective part of the team that keeps her from harm.

Like I said, it’s been an odd week. It’s hard to know which of my emotions and thoughts are unfounded paranoia, and which are reasonable self-protective fears. If you were in my head, wouldn’t you feel the same?