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!
Let’s face it – if you were blind, your best days would have some challenges in a less-than-understanding world. Ditto if you were epileptic. Well, Lily is both, and has speech problems, and developmental delays on top of it.
And when she throws a tantrum at night on the phone and disrupts everything? I feel like it throws us all off, especially now, since she’s so damned good at doing stuff that can, well, ruin everything. On nights like tonight it’s really hard for me to know just how much of her bad behavior is willful, and how much is understandable, legitimate, unavoidable response to physical or mental stress.
Look, I honestly believe that I want her to have permission to have bad days and bad moods. I do. You do. It’s not fair that she can’t stomp off to her room and sulk while blasting hard rock or something, because she doesn’t know where her CDs are or how to load them properly. I have not the first clue as to how she might need or want to deal with the seizure activity that seems to be getting worse – she can’t even tell me that, because she lacks the vocabulary and the ability to make her mouth form the right shapes to speak it even if she knew what to say.
This is the real stress that I wish people would understand about my life as a sibling. I hate being left out of medical and legal decisions. It sucks to have to psychoanalyze myself to figure out whether my motives are healthy. But the everyday not knowingness, the frustrated powerlessness I feel…that’s the stuff that fucking wears me out about Lily. And it makes me incredibly mad about her and sometimes at her that she does this to my parents. If I’m tired and fed up, how must they feel? (Which also upsets me, for several reasons. Sometimes I resent her for using them up so fast, when they’re both talented at their jobs and could really make the world happier and better. Or, you know, being part of my life. I’m upset because sometimes I’d like to write an entry like this and have it be just about me, with no concern about anyone else for five minutes – and oh, yes, the guilt hit before I finished typing that. I’m upset because it scares me, the thought of them getting old and changing, because I still feel like I need them. Do you understand why some of us are in therapy, world? Sometimes for extended periods of time? Do you understand better why I might want to see someone like me represented out there in the media, to take the edge off of the lonely feeling that mine is the only family that deals with this?)
It seriously doesn’t help that I’m in pain tonight, too, with a headache of unknown origin and continued ache in my jaw, as I mentioned in my earlier post today. And the hormones. Oh, the hormones! What to you want to bet that Lily’s got hormones making her life hell, too? So when she screams incoherently, and bangs her glass on the table…when Mom tells her not to pour the contents of her glass into her plate, or when she agrees to use an appropriate tone of voice only to lapse mere seconds later…yeah, it’s hard. Sometimes it feels too hard. When it does, I try to vent the emotion (by blogging or talking to friends or swimming or listening to loud music or crying or whatever) and sleep and get on with it…and hope the next day is better.
Sometimes, though, it’s hard to vent and hard to sleep it off. The next bad day is too likely to be the next day, and I still won’t be able to fix it or help.
Note: this entry dives a little deeper into my emotions than some posts, so there’s a good chance there are extra typographical errors or weird patches that I may come back to correct later.
One of the more uncomfortable internal dialogues I’ve had over the last, oh, twenty years has been the issue of whether something could be seriously wrong with me. I was convinced for about five years that I could have some latent form of epilepsy, since Lily’s seizures had come and gone. It was just a matter of time, I told myself, before some new trigger would arise and – boom! – I’d have my own seizure disorder. I gather that this isn’t unheard of among siblings, particularly when we’re young, this wondering if medical issues are something only having to do with our sibs, and not ourselves.
Around the time I hit puberty, I managed to convince myself that sexual intercourse and orgasm, as an experience set that I had yet to fully understand and experience, could somehow be a trigger for this lurking epilepsy. (You’d think my early interest in biology would have helped me to avoid such thoughts, but it was surprisingly unhelpful. And yes, this set of worries has since been allayed, but not without some damage to my love life.) You may remember my fear that using a dusting aid triggered Lily’s spectacular seizure a few days before my sixteenth birthday; that was related.
I guess one of the root issues is that I grew up in a family where I probably learned all too quickly that life changes, and changes fast, sometimes in unpredictable ways. Earthquakes happen (I grew up in earthquake country). Seizures happen. We can’t predict them, general havoc may ensue, and we just have to learn how to prepare ourselves. Unfortunately, given what I suspect were my predilections for worry and overthinking, this realization didn’t translate into an attitude of carefree adventure once preparations were taken – it turned into a nagging uneasiness. There are absolutely days when I’m overtaken by the notion that even if you do everything perfectly, the whole world can still go to hell.
By this point in my post, you’re probably not going to be surprised that I’m currently being treated for generalized anxiety disorder. Sometimes I worry that it’s a self-fulfilling prophecy – that I have been so worried for so long that something would become wrong with me that the worry itself turned into something that is wrong with me.
As I was recently commenting to some friends, according to the Mayo Clinic^, I meet most diagnostic criteria, and probably did as a child, too. It was only in recent years that I shared with my parents my great fear during the fireworks on a Fourth of July: having just learned that a federal holiday meant that everyone had the day off, I assumed that everyone had the day off, including police, fire, and military. My feeling was that because nobody was paying attention, it was the perfect time for bombers to attack (can you tell I grew up during the tail end of the Cold War?) What’s particularly interesting about my diagnosis is that I don’t see it as something that’s wrong with me in the way I view Lily’s epilepsy or blindness, or any of her other medical conditions. It’s just something that’s happening that I’m trying to manage and overcome.
That said, what I feel also fluctuates from day to day: sometimes it’s a relief to have had a doctor say that there’s something wrong, because it makes a lot of little pieces make a lot more sense. (Not to mention, I like the vanity that it’s not my fault that I feel so miserable sometimes.) More often than that, however, is a conviction that pairs nicely with “this isn’t a disease!”: that as the typical (and older) sister, I can’t have anything wrong with me. It’s not fair. It’s not fair to my parents to have two broken children. It’s not fair to Lily, if her sister needs help, especially with a comparatively less damaging set of problems. It’s supremely unreasonable for me to feel relief that I’m like her, or that somehow now I merit attention, because I have been given a diagnosis.
Maybe someday I’ll stop worrying about all of this. At least the part about spontaneously developing my sister’s conditions. After nearly 30 years, I haven’t had much more exciting happen to me medically than valley fever and 2009 H1N1 influenza (oh, yeah – swine flu, baby!), and the odds of developing a congenital disorder at this age? Yeah, not so high, except for things that happen to people as they age. And in that – I’m not alone. I guess that’s small comfort for my closing thoughts, but this isn’t an easy emotional state to resolve.
Lily was at home for dinner all this week because my parents had stuff going on. (I’ve mentioned that Lily goes home for dinner almost every night, right? Which you would do, too, if you had eaten my mom’s cooking before.) Since I normally call to say hi and see how everyone is doing just after they’ve finished dinner, that means I’ve missed talking to her.
And you know what? I’ve actually missed talking to her. That said…I’ve called her at her apartment to talk to her during such times, and have had some very boring conversations with her. She acts very differently on the phone in her apartment compared to being at our parents’ house. I’m not sure she understands how phones work well enough to put it all together. Invariably, she decides to blossom into active conversation just when I need to hang up. Like tonight – my cellphone battery died, and when I called back, her assistant for the evening shift asked her why she started talking to me when I had gone away (and we both laughed). Lily was much more animated after that, although we still had some silences, which are okay.
It’s just strange. We’re so…I don’t know…separate? right now. We’ve each got a lot of stuff to deal with. She’s frankly quite irritating when I talk to her with her yelling and repetitive conversations and insistence on stealing the spotlight, but it doesn’t feel right not to have some connection with her.
Three items for thought this evening. All links should open in new windows.
Item 1: Down syndrome, Family Guy, Sarah Palin, and Andrea Fay Friedman
I’ve written recently about former Gov. Sarah Palin and the Rahm Emanuel episode. Well, it turns out that the animated show Family Guy got dragged into the fray by including a guest character: a woman with Down syndrome, who apparently claimed that she was the daughter of “the former governor of Alaska” (I think we can all agree this was aimed at Ms. Palin). As with everything in this post, I missed the original airing (hey, television and internet have been lower on my list of things to do after moving than many other tasks). I’ve actually not seen it yet, but what I have seen…was verrrrry interesting. I noticed some headlines about Ms. Palin speaking out about the episode of the show, but stayed away because I didn’t want to end up feeling even more frustrated with her behaviors. What I did end up reading was an entry on Huffington Post, in which the actress who did the voice work for the character responded to Ms. Palin’s comments. Turns out this woman, this actor, Andrea Fay Friedman, has Down syndrome, and – this will shock you, I know – didn’t think the show was offensive. (She went on to participate in an interview with the NY Times that I enjoyed. Turned out she had starred in Life Goes On, a show my family used to watch, and the source of Lily’s obsession with Ob-la-di, ob-la-da. Not that the whole family isn’t a fan of the Beatles, and we all knew it before then, but Lily likes that song partly for that reason. Regardless, I had forgotten that role of hers, because I haven’t seen the show in well over a decade.)
I was delighted. Ms. Friedman pointedly made the point that the former governor was using her son as a political prop, and that Down syndrome isn’t the dread diagnosis that the media has made it out to be. I watched one of the video clips linked from HuffPo, and Ms. Friedman talked about how her family had raised her to have both a normal life and a sense of humor. It was great. I loved that a member of the disability community was suddenly visible as a person with political, philosophical, and personal views that were legit and interesting and newsworthy (even if I disagree with the cult of celebrity that contributes to things like Ms. Palin being so often in the news to begin with). I was glad to hear that an actor who had accepted a role was proud of it, even if it used her medical condition as part of its humor, and that she said something so in sync with a post I just read on FWD/Forward: not every depiction of disability in entertainment media is absolutely bad.
Okay, okay, I was also laughing really hard at the image of Trig Palin being carried “like a loaf of French bread.” Poor kid – to be so young and so visible would be hard for any infant, I would imagine.
Edited to add: after I wrote this, I saw a clip of an interview with the show’s creator, Seth MacFarlane, on Bill Maher’s show Real Time. GOOD: The point that Ms. Friedman responded to Ms. Palin’s attempt to defend her by pointing out that she doesn’t need defending (to paraphrase). BAD: Just because you got that one right, that DOES NOT give you permission to make “retard” jokes. Mr. Maher? That you made the joke/comment the way you did tells me that you don’t understand why so many of us oppose the term.
Item 2: Alexandre Bilodeau’s gold medal
I’ve participated in some discussion this week on the media events surrounding Canada’s first home gold medal winner, Alexandre Bilodeau. I missed the initial coverage, but have been catching up. (examples: NY Times article here, and also here) Mr. Bilodeau’s brother, Frederic, has cerebral palsy, and I understand that he was invited by his brother onto the medal stand.
Now, I can’t speak for Mr. Bilodeau, as all of us sibs have our own experiences. However, having recently achieved my own major victory of a PhD, I felt a lot of emotion when hearing about this. Part of me felt that it was such an obvious thing to do – to celebrate with someone with whom you have a unique relationship, whatever that might take. I couldn’t do that with Lily, because she can’t really travel and wouldn’t have been able to tolerate the silence that the audience maintains. That said, I dedicated my dissertation to Lily, and mentioned her at the close of my acknowledgements section in my public defense presentation. (I had put her picture on the slide, as my parents were in the audience.) She’ll never be able to read it, but many others will. Maybe the recognition is also a signifier of the fact that the sibling relationship can dominate us sometimes, and that not recognizing the sibling feels strange; I know I felt like I had to say and do something to keep Lily in the moment, even though it was mine. It wouldn’t have felt right to have such a momentous occasion happen without her. We don’t always get along, and right now we’re chafing against each other a bit, but Lily was also always interested in what my schoolwork and homework were about. (Also, for those who caught the Star Trek stories – Lily learned to say “DNA” from watching Dr. Crusher. So sometimes we “talk about” DNA, although this often leads Lily to want to examine me, which usually ends badly, as dramatic television can’t really be boring and all of her ideas about sick bay are based on that. Plus, she has had some uncomfortable experiences with doctors, herself.)
Item 3: When TV tries to get disability issues right
I’m not the sort of person to subscribe to cable television, so I don’t always know about the latest hip shows that aren’t on broadcast channels. One show I’m sad to have missed at its start is the show Burn Notice, which I saw for the first time on New Year’s Eve, stuck in a hotel room with few television channels. I loved it right off the bat, partly because I had just seen Army of Darkness for the first time and Bruce Campbell is on the show, partly because it’s funny and has lots of explosions, and partly because Fiona just kicks ass. Anyways, tonight I was catching up on episodes that are available online through Hulu, and ended up watching the episode entitled Noble Causes. Some of the plot only makes sense in the larger story arc, but what is relevant here is that the client being helped out by freelance fix-it/former CIA man Michael is motivated by his desire to protect his cousin Dougie, whom he describes as “slow.” (He’s never given a named diagnosis, but the writers tried to imply developmental disability.)
**SPOILERS BELOW** I want to take a moment to discuss this: I was mostly pleasantly surprised, but I’m not sure they got it quite right. I admire the idea that disability can be shown with some realistic features: Dougie is part of a program that helped him find a job, not unlike some of the activities in which Lily has been involved. It’s implied that he lives largely independently of his family (in the sense that he’s self-directed, not that he’s alone) and that his cousin loves him and feels protective of him. Doug gets trapped in a plot by thieves, who are shown to be Very Bad People partially by their taunting behavior and their liberal use of the r-word. (I have to say, I was very affected by Fiona wanting to charge in with guns blazing, as her character is wont to do, when she saw this. If people other than family and friends know how hurtful that kind of thing is…well, that’s good for us all.)
Then again, the big emotional conclusion ends up bringing us full-scale into the Noble PWD caricature. The cousin, Sugar, relates a childhood story in which Dougie, despite the taunting given him by Sugar, comes to his aid, defending family above all else. What tripped my circuits: if adult Doug can infer that marines and other members of the military are engaged in defense and fighting for good, there’s a good chance he was sophisticated enough to differentiate real family ties from the sort of relations you can do better without. Not that the character isn’t potentially realistic, but it felt too much like “PWD Has Better Morals Than Everyone Else, Because of Those Disabilities.” Frankly, it also disturbed me that “Dougie” was the name used here. The nickname is infantilizing, and it just isn’t true that all adults with disabilities are childlike or innocent. (Lily may not be able to add more than one to any number, but she for damned sure isn’t a child.) So I’m not sure whether I think the way the character was written was actually okay, but I’m willing to give the creative team credit for not resorting to the cheapest and easiest plot devices.
I’ve had an awful lot of conversations with people over the years about various aspects of life with Lily and my concerns for her continued health and well-being. I think I’ve discussed the effects of puberty on her life fewer than five times, and most of those were quick mentions. It’s a topic that has reappeared suddenly in our lives, and so I think it’s worth revisiting here today.
I think it was an aide in one of my sister’s classrooms who first provided a possible reason for the resurgence of Lily’s seizures at age 13: puberty. The theory goes that women metabolize faster during their menstrual periods – their bodies just process food, drugs, waste, etc. more rapidly than during the rest of their menstrual cycle. In young women who take drugs to control neurological disorders, like Lily’s anti-convulsants, this means that the carefully developed plan for administering medication…breaks down. The plan (as I’ve gathered; I’m not in on the neurologist visits at this point) is generally to keep the level of the drug constant in the body. Doses are given on a regular timeline, such that the new dose quickly picks up where the last one fades out. (Many of us use analgesics this way – ibuprofen every four to six hours, for instance.) Well, assuming this “faster menstrual metabolism” idea is correct, the schedule breakdown translates to drug levels being too low before the next dose can be given. For Lily, this means seizures.
Lily’s neurologist didn’t really think highly of this notion. I found a news piece supporting it in The New York Times, in one of their science pages, years after the conversation. Either way, around the time she was 13 and I was 16, Lily entered puberty. Higher seizure activity in general occurred during the next few years, some of which appeared to be related to actual menstruation. (Thankfully, this was rare, and seems to have stopped. I say thankful because Lily has a fascination with the feel and sound of crinkled plastic, and with diapers. She went through a phase of insisting that her baby doll wear diapers, which she utterly destroyed while handling. Anyways, she couldn’t really tolerate feminine hygiene pads without thinking of diapers and thus playing with them. I can’t tell you whether I’m glad she has periods or not, or unpack the complications of what that means about Lily as a person with desires, needs, and ideas of her own; I’m just glad we all are spared the strangeness of keeping her clean and healthy.)
Flash forward to right now. I’ve been asking my parents whether they track Lily’s seizures, and I guess they’ve tried it but nothing much has come of that effort. This past Friday night, I called home to see how everyone was doing, and was told that Lily was sleeping in the wake of a pretty big seizure. I was preoccupied with my own emotional discomforts, and the prospect of a weekend snowstorm that derailed my plans to visit a friend, and didn’t think too much of it. Until the next day, when I realized that I was in the throes of PMS (hence the preoccupation with needing to see people I like – especially when we had plans involving chocolate!), with the acne and wild emotions that that entails for me. A couple of days ago, talking to my mom about something, I asked if Lily had acne that day. My hunch proved accurate – Lily had bad acne, and it was disrupting her life. (She gets very inflamed pimples that she sort of paws at, since she doesn’t understand what’s going on, can’t see what’s going on, and is experiencing discomfort.) I pointed out that my period had been early during the time that I was home with her, and observed that the two of us might be on a similar hormonal schedule. (This is very amusing, as we tend to get sick at the same time, even living thousands of miles apart. And call home at the same time. And then some.)
I (lightheartedly) recommended that my parents and Lily’s assistants feed her chocolate-covered peanut butter pretzels, a particular favorite of mine when I’m craving salt and sugar simultaneously. Lily loves peanut butter pretzels. (Yay sisterly advocacy!) But it’s really a serious issue, and I feel like I’m not sure what to say, other than to remind my parents of the way that I am, in hopes that Lily and I are similar enough that what comforts me could comfort her. It’s beyond irritating that we have no ready solution for the fact that her anti-convulsant dosages break down, and that the neurologist has been more dismissive of the idea than supportive. It’s heartbreaking to me to think of Lily experiencing a grand mal seizure, or a few, roughly every month…in addition to the absence seizures and assorted other relatively small seizures she already experiences every single day. I know we all have learned to process them, in our own ways, over the years, but that doesn’t mean it’s easy. It’s that much more frustrating to realize that the small comforts that I can grant myself are hard to grant to her, since she may not have the language to describe pain, discomfort, or confusion.
And that’s just one aspect of puberty! Convincing Lily to wear bras was a huge battle for my mom. We’re not sure if she has any real sexual drive, but if she does, what does that mean? We’ve all noticed that Lily likes to talk to men – like the time my mom told me she was “flirting” with the ambulance attendants on her way from one hospital to another – but we’re not sure what that means. (Lily is incredibly social anyways.) Sometimes Lily tells me about her friend, a young man who is and has been in some of the same programs as Lily. She tells me that he loves her. Does she know what that means? I know she associates the word love with us, her family, and some of the people that she enjoys being around, but does she have a concept of romantic love?
Can my parents, Lily’s team, and I actually be supportive of Lily’s adult desires? Will we even recognize them? Will she?