Keto for seizures: food recommendationPosted: June 11, 2018 Filed under: ketogenic diet for epilepsy, Ketogenic diet recipe tests | Tags: caretaking, epilepsy, ketogenic diet, low carb, modified Atkins, seizures, sister with disabilities Leave a comment
At only 0.5 g carbs per half-cup serving (1/4 of the mix), this is a huge find for us: Simply Delish Jel Desserts.
We love it because the low carb count means we can fit this in as a snack for Lily, who is still on 15 g carbs per day. She’s never been a fan of Jell-O or other gelatin-based desserts, but sweet is sweet and snacks are snacks and to be pursued.
For Lily, food manipulation is important – being blind makes texture that much more important . The instructions call for a total of 13 ounces of water (3 cold, 10 boiling), and I typically now use a total of 10 ounces. That holds up better to fingers grabbing at them.
I’ll post later about trying to make these using sugar-free Kool Aid, and the experiments with various molds, but today’s double batch were prepared in cake pop silicon molds that I bought at Michael’s. The tray makes eight, so two are a single serving.
Note: having some tech problems tonight. Hope to come back to fix formatting weirdness and insert some links.
Post 1000: y’all, I need some helpPosted: June 7, 2018 Filed under: Day in the life, ketogenic diet for epilepsy, Resources | Tags: catamenial seizure, epilepsy, ketogenic diet, menstruation, seizures Leave a comment
Lily is having a hard time with seizures, and now that I’m living so nearby, I’m becoming a little obsessed with finding answers. You know I’m a scientist. I know how to find and read research papers. I am not finding what I need on PubMed, though…yet. I am also feeling mild withdrawal from my favorite databases, as this is the first semester that I haven’t been working for a place that got me that access since I started college.
The help I want: guidance with primary/review papers – firsthand accounts from people with epilepsy who have used hormonal birth control at the same time – firsthand accounts from people who have epilepsy that affects sensation and muscular spasm in their faces/mouths. Maybe also people with epilepsy who can tell me about sensations that make it difficult/impossible to tolerate the sensation of wearing a shirt.
Let’s get to the details. Lily is on Depo shots, and spotting most of the time. We don’t have good data on the seizure intensity correlating with the spotting/flow intensity, but I am increasingly convinced we’d find it if I got the staff to record the spotting. Her teachers told us that most of their female students with epilepsy started having problems when they hit puberty; one of the main reasons I distrust Lily’s neuro is that he didn’t believe this, even when I sent a clipping with my parents from the NY Times‘ science page. But there’s definitely work out there on catamenial epilepsy.
The ketogenic diet seems to have gotten her to only having seizures between 5pm and 9pm (mostly 6-7, with some variation). We fear that her 9pm meds get her through the night okay because her body slows down, but her 9am meds aren’t lasting because her body revs up. If this theory is at all plausible, it overlaps the possibility of the menstruation-related metabolic shifts that seem to be a known thing.
I want her off Depo. I’m on Seasonique, successfully, so I know there are options. I want that to be the answer – to settle down the metabolic waves, in hopes that the keto diet plus meds then prevents the use of rescue meds. It’s so great that there are fewer seizures – but the ones that happen are incredibly disruptive and really, really different (facial, possibly involving respiration, probably involving tingling skin, probably causing anxiety or panic).
Do you have advice on either how to help communicate this to her neuro, or how to find readings on PubMed? Or just tell me it’ll be okay…
Being a scientist doesn’t always help with science decisionsPosted: May 7, 2018 Filed under: Day in the life | Tags: epilepsy, genetic counseling, genetic testing, Goltz syndrome Leave a comment
I hold a PhD in a biological science, one that uses a lot of DNA information. Right now, my family is trying to decide whether to get Lily some genetic testing, which her neurologist wants to do. My parents want my professional opinion. And…I just don’t know what to say.
Look, I love DNA – I think it’s both mysterious and straightforward. I find it fascinating the way it works, the fact that it can convey so many stories about what it means to be alive. If I had my way, and a lot of money, I’d sequence all KINDS of DNA. (I do have a list.)
But…this is my sister. And they want to do an analysis of how she inherited her DNA, so they want samples from my parents. There may be no help we can get from this test, to make Lili’s life any easier. If we don’t find a way to help her, why do it? For science? I’d vote yes – but I know it’s not all about me. Not all researchers are reputable, or careful, or thoughtful enough with the intimate details of a life that DNA can suggest. Privacy laws in my country, the United States, are not a good protection against the government using our DNA information, and the way other companies use it – including the group that is doing the testing – in a culture that prizes profit over people – and would use my sister’s DNA for their own work…
Like a good scientist, I’m doing my background research. I’m reading more about these tests. I’m reading more about the company’s policies about privacy. I’m reading more about their ability to provide diagnoses and information the neurologist could use to suggest a new or at least more tailored therapy. I’m listening to the words my parents say to each other about this, deciding what their emotions mean as they argue through the possibilities.
(Quick aside: my sister will be 35 less than a month after I type this. For most of that time, I’ve thought we didn’t have a diagnosis for her long list of medical problems. A few months ago, my mom said maybe we do…! Which I just haven’t quite gotten my head around yet. Note to self: blog about it later.)
So: my expertise in genetics isn’t enough to help me figure out what my role should be here. And like so many sibs, a tiny voice pipes up with selfish wants: can I know whether my body harbors these risk factors? Am I too old to have a baby, and if not, could I pass trouble along? And my heart hurts that the probable diagnosis for Lily means we CAN’T do anything bit to ease her life now, or at least “fix” things. I’m not yet sure what, if anything, we might learn that could ease her symptoms. This barely controllable epilepsy has taken such a toll on her.
A good deal of food for thought.
Recipe test: keto sushiPosted: February 25, 2018 Filed under: ketogenic diet for epilepsy, Ketogenic diet recipe tests | Tags: epilepsy, keto sushi, ketogenic diet, medical diet Leave a comment
We found an idea that excited us: keto sushi. Swap cauliflower “rice” for sushi rice, mostly, and watch what you include. Lily’s not a huge fan of sushi, but the rest of us kind of are, so this will let us include her more easily. It’s best to call this inspired by Japanese cuisine; this is not what you might expect from an authentic restaurant. If I get to visit Japan, I’ll tell you how well this approximates their famed cuisine!
Source 1: KetoConnect Sushi Source 2: ruled.me Keto Sushi
Ingredients I used today:
- 1 C cauliflower “rice”
- 1 Tbsp coconut oil
- 1 sheet nori (sushi seaweed)
- 1/2 medium avocado
- 1/4 C Persian cucumber
- 1.5 oz cream cheese
- two slices smoked salmon
- small splash soy sauce
Method: text first, commentary with pictures later!
- If you’re starting with whole cauliflower or florets, as I did, put them in some sort of food processor and quickly pulse to chop them up. I used a handblender food processing attachment.
- Heat a frying pan to medium heat. When the pan is hot, add the coconut oil. When the oil is melted, stir in the 1 C of riced cauliflower. Cook until browned.
- Transfer cooked cauliflower to a bowl and let cool slightly. Add a small splash of soy sauce for taste and color (1/4 to 1/2 tsp). Set aside.
- Prepare the other ingredients. Measure the cream cheese, then cut it into strips. Slice the cucumber into matchsticks or other small strips. Same with the avocado.
- Optional/recommended: gently heat the nori.
- If you have one, put the nori on a sushi rolling mat – a makisu. If you don’t, use a piece of plastic wrap or a thin towel. Have the long side facing you.
- Gently spread the cauliflower rice onto the nori. Leave about 1-2 fingers’ width free of rice along the far long edge.
- Lay the other ingredients on top, near the edge closest to you, but leaving at least a finger’s breadth clear. Do not place fillings near the left and right edges; as you roll, they may move outwards. (They did for me!) I started with the fish, then put the cucumber on. I put the cream cheese on top of the fish, and the avocado on top of the cucumber, but leaning onto the fish/cheese.
- Roll the long edge over, onto the “rice”, enclosing the fillings in your hands. Using a makisu or other device, squeeze the roll gently towards you. Roll and squeeze as you go to compress the ingredients.
- Use a SHARP knife to cut. I cut the roll in half, then in halves again until I get the desired number of pieces. For today, I cut each half of my original roll into 8 slices.
- Serve and enjoy! Or refrigerate.
We rated this about 3 g of carbohydrates per 1/2 of the recipe. (see below, please!)
Okay, let’s talk experience. This was NOT like my previous attempts to make myself sushi.
Let’s start with the rice substitute. I was expecting bigger chunks; it came out really fine. But decent, honestly.
The cooking went fast enough; I think cook time will vary with your preference for doneness and your stove. I didn’t give this a full brown, because I wanted the sushi to have a big more of a bite to it.
I didn’t follow the instructions in KetoConnect’s recommendation to let this all cool. When I’ve made rice sushi, I read that it needed to be warm – not quite hot, but super close. I suspect it makes the nori a bit easier to roll without cracking; I tried to make a poached salmon maki a few weeks ago with leftovers for my parents, and the cold ingredients were a little hard to work with.
Speaking of cold, I did place the cream cheese in the refrigerator to chill in between weighing it on a food scale. I wanted it to hold together.
I also tried to follow my cookbooks’ and favorite celebrity chefs’/documentaries’ advice, to “toast” the nori. We have an electric stove, so I just moved the frying pan I’d just used for the cauliflower back a burner to cool and waved the nori over the remaining heat.
Okay, I MAY have started by placing a nori on the cooktop and turning away to look at something, first, and make a really funky, curled piece of nori that I later ate for snack before gently toasting the nori in a more TV-cook show way.
The KetoConnect recipe says that you can layer the cauliflower as thick or thin as you like, but one cup of raw-then-cooked cauliflower doesn’t go very far at all. (I’m a trained scientist; I like metric measurements and using weights rather than volumes for this kind of thing. I’ve also watched too much of The Great British Bake-off.)
I may have used my spoon at little too hard as I spread; the cauliflower compressed some.
Then I put everything I was using for a filling out on top.
Then the hard part: I just moved, and my makisu is…somewhere. In a box. Probably not the labeled kitchen tool box. My parents don’t have a makisu. I dislike the kind of cling film we have now – and I have not enjoyed using plastic wrap when I tried to make the “rice on the outside” style of sushi in the past. So…I used my fingers to roll and squeeze!
When I’d finished the basic roll, I stepped back. And felt grease on my fingers. Maybe it came from the ingredients? I don’t know. I just found it a little off-putting, and again, a difference from the sushi attempts I’d made previously. I sliced the roll in half and put it in the fridge to chill for a few minutes. I did not opt to wipe it off or anything. I just let chemistry do its thing.
Then I had fun with knives! I used one I thought was very sharp, but it got a bit sticky from the cream cheese, and I was panicking a bit because I was suddenly not so confident with my knife skills. So the last two pieces of the eight I cut from the half roll came out…squashed.
I should note that Lily’s been having enough seizure activity/spasming during dinner that I think it’s affecting her ability to chew. So I made the pieces small, to make it easier for her to chew. For myself, I’d probably have cut the whole roll into four pieces.
You can see the mess I made with this first slicing effort in my picture.
At this point, my mother appeared in the kitchen. She handed me a knife she said was the sharpest one in the room, and I was happy to see the serrated edge. That turned out okay.
Now comes the BIG freak out: confirming the carbs, because I was then tasked with packing and labeling the food to take to Lily’s place when we walk over tonight. Right now, her team has asked that we keep her on no more than 15 g of carbs per day. This is NOT EASY, of course, because it means limiting the fresh fruits and vegetables the rest of the family is eating. (We have a local – and truly lovely – farmers’ market.)
- KetoConnect’s recipe site says that a serving size is 1/2 of a roll. The nutrition label suggests that for that half roll, the net carbs come out to 4.23 g. There’s also a cool link to the MyFitnessPal site, with an invitation to look up the Ketoconnect – keto sushi item.
- The MyFitnessPal description indicates that for half a roll, there are 9 g of total carbs and 2 g of dietary fiber – and we get to subtract the fiber from overall carbs to get Lily’s net carbs. That, you notice, is a whopping 7 g per serving.
- I really hope that this is an entry error, and that it was supposed to be that level of carbs for a WHOLE roll.
- I was playing around with recipes earlier and liked what I read over at ruled.me, which was what helped me think of smoked salmon as an ingredient. That blogger helpfully included a table that matched the ingredient list to all nutritional data. We cut the 1.5 roll size down to 0.5 roll and divided the net carbs from 5.7 g to about one-third of six grams, which gave us 2 g carbs per serving. (Both recipes used avocados and cucumber; the fish and cream cheese have no carbs, and the nori carbs are locked up in dietary fiber).
My inner scientist went a little crazy at that point. I like math, okay? And this is why I posted my slightly whiny post about keto for weight loss being really different from keto for epilepsy control; a small error probably wouldn’t push you out of ketosis in the weight loss method, but if Lily is taken over her VERY LOW level of carbs, ketosis is blown, and the seizures could be worse again. If they’re even better.
I may have yelled some of this while talking to my mom about the actual carb count. We labeled it 3 g, as I said, per serving, and I put them into Ziploc bags. (We got the wrong kind, or Ziploc changed their design: these are loaded from the short edge, not the long edge, in snack size. I don’t recommend using these to pack the sushi.)
So that’s my first try at food blogging for fellow sibs and folks using keto to control seizures! All of my pictures were taken with my iPad, by me, as I worked.
Reviving the blog for 2018!Posted: February 22, 2018 Filed under: Day in the life, Uncategorized | Tags: disability, epilepsy, family, sibling with disability, siblings with disabilities Leave a comment
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!
Hello again, internet! I have a question for you!Posted: August 29, 2012 Filed under: Blog logistics | Tags: biology, epilepsy, multiple sclerosis, sibling with disabilities, sister with disabilities 2 Comments
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!
Sometimes my heart aches for my sisterPosted: February 8, 2012 Filed under: Day in the life | Tags: epilepsy, sister with disabilities, supported living Leave a comment
A few times over the past week, my sister has opened her phone conversations with me with mention of either people talking about eyes, or that she was “born that way.” I know she’s got some new staff in her supported living program, and that she’s been part of some of the meetings during which I imagine my parents have tried to explain to these new people what Lily’s reality is like. My heart sinks when I consider that it might be a reaction she’s getting from people in public. She’s clearly upset by it, if she’s telling me about it. I am at a loss, though, as to how to comfort her. It’s hard to help her find the words to express her emotions, and therefore hard to know if she just needs to vent or wants help finding a solution of some sort.
It’s been a rough week for her in other ways, too. When I called her on Saturday, she replied to my greeting by saying, “Ellie, I’m crying.” Her voice definitely conveyed that she had been struggling with tears before I called. My immediate suspicion was that she was experiencing emotional upheaval before starting her period, which was bolstered by my mom telling me that poor Lily was also experiencing an acne breakout. Sure enough, on Tuesday, I was proven correct.
Why should this tug at me so much, when it’s a normal part of human biology? Well, remember: Lily entered puberty at a typical age, for current American society, but only experienced menstruation a couple of times during that first year. Mostly, her epilepsy, which had been pretty well controlled, erupted in frequent grand mal episodes. For the last 15 or so years, she hasn’t really had periods – but she’s had a huge number of seizures, of several kinds and varying magnitudes. My mom wonders if her newest anticonvulsants – which are, happily, working pretty well – have less of a suppressive effect on her hormones. Thus, Lily is currently only just learning to navigate her own body’s regular fluxes. Some of that includes distressing feelings, like the sensation of having wet her pants without having done so, or cramps. (I seriously hope that she is spared the migraines that typically hit me as I start my period!)
For now, I’m calling my sister more often, to try to cheer her up, or at least to distract her. I’ll probably send her a care package, too – chocolate is something we both love! Hopefully we’ll figure out how to help her deal with this change to her life soon.
Resisting the Oppression Olympics is hardPosted: May 11, 2010 Filed under: Day in the life, Media | Tags: disability, epilepsy, mental illness, siblings, sister with disabilities Leave a comment
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.
Some days are hard for Lily, and thus hard for mePosted: March 16, 2010 Filed under: Day in the life | Tags: anger, epilepsy, frustration, siblings with disabilities, sister with disabilities Leave a comment
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.
There’s something wrong with my sister – what about me?Posted: March 8, 2010 Filed under: Day in the life | Tags: anxiety, epilepsy, siblings with disabilities, sisters 1 Comment
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.