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. 😉
Something I wrote awhile back:
I just started my new job, in a new place. Most of my stuff is unpacked. Most of my stuff is still a total mess. This first week of teaching – because I’m teaching now – was exhausting. I pushed way too hard. But I learned a lot and am taking some time to recover and plan.
In the middle of all of what I’m going through, my sister continues to amuse and delight me.
The latest story that I wish I’d seen: Lily’s staffing still has some gaps, so they’re interviewing new people. Lily apparently couldn’t remember the name of the person they interviewed this week, and referred to the woman as “Bob” when talking to our mom or to the staffer who was on shift.
This made me laugh a lot, but it also pointed to an interesting thing: my sister may have realized that she didn’t have some knowledge, and filled it in somewhat arbitrarily in order to just get on with her life. She’s forgotten names before, but normally picks names of other people in her life. This is the first time I can remember her making up a name entirely. (I also have no idea where she got Bob; I don’t know that any of us knows people named Bob that we’d share with her!)
* * *
…and more recently:
Mom and I sometimes play Letterpress – sort of a single-word Boggle. Lily was listening in to our “trash talking” and conversation about what words to play while having a speakerphone conversation tonight. Mom had a first turn to take in a new game, and told Lily she could play either “zit” or “goat” (both are inside joke words that we play in the first two turns of the game, if possible). Mom played “goat,” I played “zits.”
Then Mom wanted to use another “z” on the board, and asked Lily for words that start with “z” – Lily correctly suggested “zebra.” This was no good, as there was no “r” on the board. Mom asked Lili, mostly in jest, for another word. (We haven’t really taught her another, besides zebra, but you know, you have to ask sometimes.) Lily clearly was busy thinking for a minute, and then suggested, “horse.”
Seems we have a few more things to teach her about phonics! But it was funny. 🙂 And it makes me laugh at the memory of my doomed Scrabble game with Mom some years ago, home from school on vacation, and we were trying to keep Lily occupied by playing catch with beanbags. (Lily had the habit of snatching Scrabble tiles.) At one point, Lily got exuberant – not sure if she was bored, since I obviously wasn’t paying attention – and launched a beanbag that slid right across the middle of the board, and wiping all of our words away.
Recently I had the great delight to see Sarah McLachlan in concert for the first time.
To give you a sense of what this means to me: the album Surfacing was the first brand-new CD I bought for myself, as a senior in high school. This was the age of Lilith Fair, which I didn’t get to, but my parents bought a concert DVD for us. The next year I started college and found that Sarah was only one of the voices who spoke to my young self about life, love, feminism, and belonging. We call them by their first names, mostly: Sarah, Ani (DiFranco), Tori (Amos), Dar (Williams). The Indigo Girls, as a duo, got their full name. I gravitated towards singer/songwriters: Lucy Kaplanksy, Tracy Chapman, Mary Chapin Carpenter. I’ve now seen Lucy Kaplansky, and saw a set by Dar Williams at a festival – but I’d never seen performances by most of these artists who are iconic to my feminist subculture.
Those artists, and my love of them, made an impression on Lily. To this day, many of her favorite songs are those I loved during my late high school years. She has some favorites from Surfacing.
Forgive me for that amount of detail; it makes the rest of this that much better. 🙂
So: I got home from the concert, high on feeling the sisterhood and warmed by the resonance of my progressing life with Sarah’s new songs. During one of my phone calls home, I was telling Lily about the fact that I got to “see Sarah McLachlan.” I asked her if she remembered what songs Sarah McLachlan had sung that she liked (musicians almost always get full names in our conversations), and could tell that Lily was…not really connected to the conversation. Trying again, I named “Building a mystery” as a song she had performed, and then, putting extra excitement in my voice, I said that she also sang “Ice Cream.” That’s a song I’d put onto a mix CD for my sister, because she’d picked up on it when I had the album on.
To my great surprise, my *mom* started singing it, trying to engage Lily. I take for granted that we all have memorized more of Lily’s favorites than we like to admit (she repeats them so often), but that really caught me off guard. Mom paused, and I figured Lily had just not felt like being part of the conversation.
…so of course, Lily just started BELTING OUT “Ice Cream.”
And now I feel like I’ve done an okay job being her big sister.