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…
Note: I drafted this…before today. And then life happened and I didn’t finish it and never posted. Just saw Wil’s speech pop up again, and realized it had to be finished. This is a little less sibling-focused than some of my posts, but know that some of my anxiety defffffinitely comes from being a toddler and seeing my infant sister’s seizures, which I have more often shoved aside than faced. Depression is my anxiety’s shadow. Let’s get to the story, then, shall we?
Remember when I told you about how my sister and I are Star Trek fans, and kinda nerdy? Today I am remembering that, with so many emotions.
Today a dear friend of mine sent me a link to Wil Wheaton’s blog, where he posted the text of a speech he gave at the National Alliance on Mental Illness. I struggle with anxiety and sometimes depression, and the resonance was so strong, and my emotions felt so big today, that it took me three attempts to finish reading it. It was just…a lot. Relief at seeing my own struggles in better words than I usually pick. Shame that I am so ashamed so often. Sadness that my fight is feeling so much like a fight, and not like a “good” healthcare situation where you go to the doctor when you’re sick, and you get treatment, and you are better. Anger that it feels like this is ANOTHER burden, on top of the fibromyalgia, on top of the immune system weirdness that will 99% probably never be pinned down, on top of being a sibling and loving so fiercely someone who needs so much, on top of the normal human struggle to live and care for loved ones of all ages. I just got a bad health insurance situation resolved, mostly, and just yesterday, so I’m hoping I can spend some time on the phone on Monday setting up new care providers and all of that fun stuff.
Including a therapist.
But let me tell you more about meeting Wil Wheaton. Yes, go read my earlier blog entry, if you haven’t yet.
When I went to the con where he was appearing, I was in the throes of awful grad school stuff. I was at the tail end of my dissertation, my advisor was not the best fit for my training needs, I was not getting enough support – I literally waited for feedback on one of my chapters for nine months. (Years later, we think my health was already collapsing some, because I got a bad infection during my second year of grad school, and my immune system was probably starting to spiral into weirdness that culminated in the fibromyalgia.) And most grad students facing the wrapup of their work and the writing up of the dissertation are anxious, stressed, or otherwise not in a good mood. I’d known I struggled with anxiety since my first year of college, so I was seeing a therapist (who predicted that I had something like chronic fatigue, just without any pain). I was struggling.
And I just wasn’t as open about Lily then as I am now. I hadn’t figured out how to NOT make a big deal about her life, you know? Because she is, in a few ways, so different from everyone else. She can’t be treated like a typical sib, because she isn’t typical. Talking about her needs sometimes seems to feel almost proactively defensive – making a thing of it – but not talking about her makes me sometimes feel like I’m hiding her, which isn’t true.
So Wil Wheaton asked me about myself a bit, and I told him – with my anxiety on full display, in retrospect – that I was trying to finish my PhD. And he was gracious about it. He didn’t say anything about the fact that one of the books I brought to be autographed was from a used bookstore, and I hope he knows I would have bought it new, but I just couldn’t afford it then. He told me that he was sure I’d finish my PhD.
Those small moments are such powerful things, aren’t they?
Now, knowing Mr. Wheaton to be a fellow member of the anxiety club, that memory feels so much stronger. A moment in which a stranger said that I would get there, get through it – and not JUST a stranger, but someone whose work I had admired, a celebrity.
I want to thank him now, more than ever, for helping me fumble my way through that day and the months that followed – being brave enough to share Lily’s story with her heroes, being brave enough to be awkward, resolving to finish my degree. Now I’ve been a college professor, using that degree, and tried to give back, to help students and friends and strangers, via this blog, sharing tips about coping with anxiety, and maybe – if I’m lucky – being that person to speak, in a small moment, to help even one other person who’s struggling.
Do you need help coping with emotions or with mental illness? Check out these resources – some paid, some free, some low-cost. All links open in new tabs or windows. You are not alone. WE are not alone.
Captain Awkward: look, if you’re not reading, you’re missing out – can you really ask for better than advice from a filmmaker/film professor? Join the Awkward Army and be less alone in the fight against your jerkbrain. If you’re looking to be a good ally or to support a friend/loved one fighting mental illness, come read about that, too.
Captain Awkward: Guest Post: 14 Free and Low-Cost Mental Health Resources
Feeling anxious now? Try square breathing.
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.
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.