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.
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!
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.
I am trying to help my mom find recipes for meals that Lily will enjoy, or that will forestall her complaints. We need less complaining in our lives, and Lily complains a lot about foods she smells/hears us eating that she can’t have.
Mom just had me look at a low-carb sushi recipe. The text commentary was just so incredibly judgmental and relied on stereotypes about Japanese culture and cuisine. The carb count does not include the vegetable filling.
It’s just frustrating, you know? I need to find recipes as close to zero carbs as possible – Lily can only have 15 g of carbs per day. Or she risks seizures. It’s not about losing some weight; in fact, she’s started gaining weight from the high-fat component of the diet. (This is complicated by the fact that her staff are not supporting her in exercising as much as we want – she’s lost a ton of muscle tone in her legs.) It’s not like an extra gram or two just delays her goal, in other words. That extra gram could push her away from seizure control.
I know this emotion – this jealousy, the bitterness, the frustration – is incredibly selfish. I don’t want to have to do the math I need to do to help Mom, who needs help doing less per day. I am sad that I find encouraging recipe titles that have enough carbs to be something like two cookies for the whole day’s carb allowance. I’m scared for my sister.
I’d like to become better informed about ketosis so I know how much those small changes in carb intake are affecting my sister. I need to know what keywords will help me find the recipes I prefer more easily. I know I’m tired this morning, partly after a frustrating dinner last night during which Lily had her new combined bad behavior and bad-behavior-mimicking seizure activity. (At one point, her right arm was seizing, and possibly more of her body, which was hard to distinguish, as she was sitting cross-legged in her chair at the dining table.) I know the keto recipes for people using ketosis to lose weight are a helpful source of information and inspiration. Hopefully I’ll regain some calm and be appropriately appreciative…
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!
Funny how life gets busy, huh?
I’ve been posting a lot more on the SibNet group on Facebook, since I’m on Facebook a lot for work and for fun anyways, and sometimes it’s nice to use my real name. I do want to start posting here again, though, because a LOT has been going on in the sibling life: new medications, new devices, new staff, new family relationships, and some plans in the works for good things I don’t think any of us expected to see happen.
Of course, now that I’m contemplating posting again, I am experiencing a temporary internet outage at home and so…we’ll see how it all goes!
I wrote this a few weeks ago. I was just triggered into wanting to post it because I just received a treat I bought for myself – the full series “The West Wing” on DVD. I loooooooved this show when it was first on, and it makes me feel much better to know there are other people who share my liberal political agenda. 😉 It’s bolstering, as I struggle to live up to my own ideals while teaching. (And it just helps the hours pass as I prep lectures and deal with grading.) Anyways! I have just gotten to the part of the first season in which the president’s health becomes and issue – and of course, his health issue is that he has multiple sclerosis, like my mom.
What I wouldn’t give to know, really know, that I’ve made her happy and proud and that she knows I love her and fight in part because I know how damned amazing she is despite her illness and what she’s been through.
I’m locked in my own head pretty deeply right now. It isn’t inaccurate to wonder whether I’m in a depressed phase – not sad, depressed, where I read novels so I can feel emotions that aren’t anger, when I sleep all day and toss and turn all night, when I get the closest I get to bingeing and purging. (Weird that I can be thankful to the fibromyalgia and the now medically-soothed urge my body has had to vomit every day for weeks and months at a time. Doesn’t stop the bingeing.)
I have had many of my metaphorical nerves shocked by the media I consume, on top of whatever else I need to be discussing with a therapist I do not currently have. (Today, let’s skip the fact that I am not sure I can afford the copays to see all of the physicians I clearly need to see.) I’ve been watching Frontline, American Experience, The Daily Show and The Colbert Report. I’ve been reading John Scalzi’s Whatever, Geek Feminism, friend-recommended articles from Mother Jones, academic papers on gendering of roles in universities…and Autostraddle.
It’s taken me until this third paragraph to get to the thing I want to say, because it hurts so much to focus on it. I’m making you read that – not editing it away – to try to drag you into this place I occupy, too. Look: a friend of mine lost her mother a few years ago, too soon and after a protracted illness, and grief moved into her life. Reading <a href=+http://www.autostraddle.com/before-you-know-it-somethings-over-241440/"Before you know it something's over", about Riese’s loss of her father and the grief that moved into her life, for me, tonight? was partly something I chose to do to continue to understand that grief. (It’s also probably obvious that it fits into the larger context of my headspace right now.) What grabbed me from Riese’s essay was her talking about what she felt when she decided, as she put it, to live:
But death is not, I realize, a win-win. I have all this time, you see, and I have to use it, I have a legacy to uphold, I have to pass on his genius genes to my children. At my age he had only ten more years to live, I owe him at least double that amount.
(You should read the essay – it’s beautiful and painful and so much of what people struggling with death of a loved one want those of us not grieving to know.) It grabbed me in a way that I resented, because I didn’t mean to be dwelling in my own misery: it made me want to scream or cry or otherwise have an outburst, to shout that it’s no fair that I’m in the place I am in life, feeling unable to live up to what I feel I owe my parents: the best life, full of achievement and love and family.
Now, I know this is partly an idea emerging from my child-mind, and I know it’s worse right now because I’ve had some disappointing dating experiences, and I was recently participating in a conversation with other siblings about having our own kids. But it’s there: I feel, now, like if I fail to be amazing, I’m somehow letting down the whole family. I have to do things Lily can’t do.
I frequently have existential crises. Thanks to my current medication regime, I haven’t had a panic attack in a long time; writing this has brought me to the edge, and the flush of adrenaline has started. I’ve long been horrified and scared of ceasing to exist – much as I am fascinated by the morbid, I am terrified of not being, any more. (With the continual pain from the fibro, though, I am starting to understand the lines from childhood fairy tales, about elders being tired and ready to rest. Yup, need a therapist.) Here’s what I hate: I am the last member of my family, in a sense, and I know how proud my parents are of me, of this child they made together. That I have no children of my own ends that legacy.
Perhaps this is one reason that I pour so much into teaching – leaving a positive legacy, passing on the lessons and love from my parents.
It’s hard enough to battle my own desires for kids: I’ve wanted to be a mom for a long time, emotionally. Physically I’m at a moment of hormones such that I see the commercials for infant Tylenol and fight back tears. I keep wanting to play with my friends’ babies, but also sometimes am so filled with jealousy that I can’t be around them. (I’ve talked about this before; I’m sure I’ll do it again.)
It’s also weird, as a scientist, to think about this feeling of owing children to my parents. I study evolution, which is all about offspring that bear their own offspring, and it’s not especially comforting to think of my childlessness being a tiny version of an evolutionary dead end. It’s also remarkably selfish to think that if I don’t have kids, the world loses out somehow! Add in to that the genetic uncertainty of any conception, and the knowledge that we don’t understand Lily’s disabilities, at all (or, hell, my own, or our mother’s multiple sclerosis), and risking having kids is that much more dramatic. But it’s there: I feel like I owe it to my family to have kids, aside from my own very strong, very clear desires.
You can see why dating is somewhat complicated. 😉
By so very many standards, society views me as a success. I have a PhD. I am a professor, and although new to the job, have (by their own words) had a positive impact on my students. My research papers have been cited pretty often, all things considered, and I live on my own and sometimes knit interesting stuff and cook delicious food for loved ones. How much of that is me, as I would be without my sister’s influence? How much have I worked to earn awards and to stand out and be amazing because of what I felt I owed my family, for the things my sister can’t do?
That’s how far I got. Here’s the list of people I feel like I owe:
– my mom
– my dad
– my parents, together
– my sister
– my students
– my “chosen” family, the sisters I made in college
– my country (which my liberal dictates say needs me)
– the world
– the future (this overlaps with my students)
– my previous self, before my diagnosis
– the people who have believed in me and paid me and loved me
Here’s the list of people I am sure my loved ones would tell me I owe:
Okay, MAYBE, maybe, they’d agree with me that, having made the choice to take on activism and having signed a contract to teach, that I owe some effort to my allies and students. But they’d phrase it another way that emphasizes my choice and my duty, rather than “owing” things.
I think many sibs might understand how I’m feeling, along with anyone else who has lost a loved one too soon, or had a loved one who has been a hero. Maybe it’s just “normal” grief for the life we might have had, which some of us experience early, some late, and some, perhaps, never. I wonder if a lot of us have trouble connecting with others (and by that I mean I wonder if this is MY trouble) because we feel like this is a burden we bear, this owing the world for the disappointments and sorrows it feels, and like the burden is for us alone. Maybe it’s because I am the only other child? I don’t know.
All I know is that I feel like I owe the world more than I have given yet, and every day I push myself to try.
Given that, you know I HAD to click on a link about Sir Patrick Stewart being awesome. He helped to surprise Dawn Garrigus, who has a serious degenerative disease, at DragonCon, with a personal meet-and-greet. Dawn has a problem with her mitochondria, which are nicknamed the powerhouses of the cell – as a biologist, my heart sinks reading just the name of the condition. I am so glad she got this chance, and the pictures make it look like the rest of her family join her in being huge Trek fans, like my family. My heart goes out to her, of course, but also to her sibs – of course.
…and yeah, it makes me wonder if I could ever ask the actor my sister only knows as Captain Picard to record a message for her, as “Data” and “Deanna” and “Wesley” all did. My dad now sometimes plays that recording for her (have I mentioned this? if I haven’t, oops! if I have, I’m doing it again!) on the phone. Through a creative use of speakerphones, I was part of one of these moments – I could *hear* that Lily was suddenly sitting totally still. When the message was over, she was just so happy. “Deanna called me on the telephone!” Thanks to the digital transfer we made of that file, we can make this happen again and again.
There are so many people who have been involved in the making of the Star Trek universe, and so many more who are fans in some way, that I know we can’t all be superb humans who never do anything weird or hurtful…but I think we do a great job trying to be the best we can be, among us.
Edited to add: This isn’t meant to be a passive-aggressive way of expressing that someone should pass this info along to anyone, for what it’s worth; I’m not actually ready to ask any other actors for help in crafting something for my sister. And, given that I already have done so? I can do it on my own. (If I were to make a passive-agressive – or direct – appeal to communicate anything? It would be just a “thank you.”)
You might take from this, however, that Make-a-Wish could be a charity to which you would donate…or not to tease a Trekkie in your life as much as you might otherwise. 😉