I haven’t been posting here – it’s fallen low on my priority list. Lily’s seizure activity has been a bit higher, my new job is taking a lot of energy, my symptoms are up and down, and things are just…busy and, frankly, stressful and overwhelming enough that it’s hard to step back and be calm or even pleased. I don’t want to just post here when I’m frustrated about where I am in my life, or scared that my own health will prevent me from being able to help with Lily (even just by calling her to check in when my parents are busy).
I feel bad that I’ve had to stay away from posting, because there are so many stories I want to share – especially some nice ones, about how much we laugh and how great things can be, even as we deal with a lot of weird things. But work calls! So back to work I go.
I’ve been very quiet here recently. There are a lot of reasons for that: jury duty, writing assignments at work, looking for new jobs, managing my own symptoms while still getting used to new meds and having the weather be weird, desire not to think too carefully about the kinds of things I post here. You know: life.
I’m not sure, right now, when I’ll have time to post again, but post again I shall! I think I’m close to being ready to talk about how people perceive Lily, right now, as she’s been having a lot of adventures with new supported living staff and trying new activities under our parents’ supervision. And, wow, she’s 30 now. (How did that happen??) And I am now 33. (Again: what happened??) Funny moment: I was on the phone with Lily and my dad, and they were using a speakerphone. Dad teased me that I was getting old, and I sort of sighed over it and conceded that I was old. Lily immediately responded with, “Oh, you’re an old girl!” Definitely mortified me a little, but it made everyone laugh. (My mom heard it from the other room, and later commented that it was quite a logical statement from Lily, since she considers me a girl, not a lady. “Woman” isn’t really in Lily’s vocabulary, somehow.)
The good news is that things aren’t scary, as far as Lily is concerned, right now. I don’t feel stable in my own life, but she seems relatively happy and, from what I’ve been told, hasn’t even had a lot of seizures recently.
And with that said, I need to get back to work and errands and chores. Hopefully I’ll be back online soon.
I had an MRI last weekend, and an abdominal ultrasound this week. I have a work deadline today and a job application deadline that I really hope means they accept stuff today, because I just sent in my package.
Someday soon I hope to post about the fact that Lily is about to turn 30. (!!!!!!!!!!!!!) This is…it’s something. And I am scrambling to look for a job and to deal with my own continuing diagnostic adventures, but I have to do something special amidst that scramble to help mark the fact that this remarkable young woman has defied her doctors’ expectations and lived and blossomed.
So while I scoot around my world, please go read this: “On The Fear Of Being Different: Childhood, Audism and Able-Bodied Privilege”, posted at gradient lair.
I haven’t been posting: I have been sick and pouring almost all of my energy into my job.
Life goes on. Lily is going through yet another upheaval in staffing, but is doing fairly well, considering. She’s been going to synagogue on Friday nights once a month with our mom, when they have “family” services for Shabbat, with extra music and everything attuned to youngsters and their more-limited attention spans, and she’s been doing great, from what I hear.
I feel like a total wreck. In the last four months, I have had three major illnesses, one of which sent me to the ER, and two diagnostic procedures that kept me out of work (one under anesthesia, the other just a morning of stuff). My doctor thinks I’m not wrong in fearing that there is some other diagnosis in my future, in addition to the fibromyalgia, because I keep getting sick, and that one antibody I seem to have too much of just seems to be staying at that high level.
It’s taken almost everything I have to be able to go to the grocery store and do my laundry while putting in my normal work hours. And this week I had a discussion with my boss that ended with us both realizing that the science my heart wants me to do isn’t the science I’m doing, and it’s best for both of us if I find another place to work.
I’m honestly still in some shock over this, even if I can’t say that it surprises me; the words he used were that I “wasn’t working up to my full potential,” which echoes almost exactly what I’d confided to my therapist a few weeks ago. I had just been under the impression that I was correctly assigning this to my physical health (which appears to be inextricably linked to my mental health), rather than an honest mismatch between myself and the lab I’m in.
I’m feeling horribly alone. I am about to turn 33, within a few weeks of my sister turning 30. (Our dad will be 60 this year!) I feel (mostly inappropriately) ashamed: I have a PhD, I have some wonderful friends who do not live close to me, I have a sister and parents who love me but are far away, and I have a diagnosed disorder. I do not have, as I dreamed at the tender age of five or six, a partner, or children of my own, or a “permanent” job (whatever that means; academic scientists – even those with tenure! – move around a LOT), or even basic unsullied health. Hard not to feel sorry for oneself under such conditions, even though I am loved and otherwise lucky. (No wars touch my home, I have not been attacked, I don’t have much money but I am not hungry, I have health insurance and a safe place to live.)
* Edited to add: one of the weirdest aspects of this self-pity is that I am craving comfort foods. I want to go out and have a beer and a burger, or to eat a warm bowl of macaroni and cheese. I want a really spicy plate of pad thai, or a big slice of chocolate cake, gooey with rich frosting. None of those is available to me. I seem to be triggered into migraines when I eat chocolate. I haven’t been able to eat many spicy foods without vomiting; ditto rich foods, including many dairy products. Alcohol is not allowed with my current medications, and would probably cause me to feel ill and/or vomit, given that I have such problems with my stomach. It’s kind of good – this physical problem with eating many of these foods keeps me from over-indulging – but it’s also really sucky.
One of my “problems” – one of those bad habits I am working to understand and break – is that I am perpetually worried about the distant future. I feel panic rising when I think of myself as struggling to find a good job, because if I don’t have a good job, how can I relieve my parents of worry about one of their children? How can I be a good sibling to my sister? How can I save up and be able to care for her and for myself when our parents are too old to work, or too sick to work – which may come sooner than later, as they both have medical conditions, although that’s a perpetual uncertainty – or when they have died? Right now I can only deal with the problems in front of me: see a new neurologist on Monday and see if he can help me with my still-nearly-constant light sensitivity and weekly headaches, start looking for a new job, keep working as best I can on my current project so that I can write it up and send it to be considered for publication in the best possible journal. Eat and sleep and take my medications, exercise as best I can, and think about organizing Mothers’ Day gifts from myself and Lily.
Somehow: keep going.
Dude, the random stuff that comes up in the spam filter sometimes makes me laugh. Like this:
Now the man becomes agitated — why are you being shallow and selfish? Do you not care about any of his other good qualities? Didn’t you just hear him say that he always remembers his girlfriend’s birthday? In light of all of the good things he does, does it really matter if he knows how to perform surgery?
Which – yes, spam! – has nothing to do with anything I’ve written here. And my very first thought, upon reading it (besides that it was stolen from somewhere else) was: as a patient, as a professional educator, as a HUMAN, you’d better BELIEVE that I care if someone knows how to perform surgery…if that is that person’s job or they are asked to perform surgery. And the narrative structure of that little bit of text made me think that’s what was at stake.
And what do you know? I found the source of the spam text: an article on Cracked! I’m not sure whether I agree with the substance of that article, after a quick read (I find it a bit reductionist and it seems to endorse a way of life I don’t see or accept as a universal human experience), but I am relieved that I was meant to understand that remembering a partner’s birthday (which, hey, good for you! most people like that!) is not really what the world expects when you are in a situation where someone is bleeding on the ground.
This concludes my break from work to check the spam filter. I now return you to your life.
It’s been awhile since I posted. Frankly, I’m exhausted and a little miserable and am doing my best to focus all of my writing energy on the project I’ve been assigned at work. WordPress tells me that I should be celebrating my blog’s anniversary, but my body is pointedly reminding me that I am currently observing my first anniversary post-diagnosis with fibromyalgia.
I’m no longer sure that’s an accurate diagnosis, or if it is, whether it’s my *only* diagnosis. I am back in the land of blood tests and fancy procedures and being grateful for my insurance not requiring copays for those fancy procedures. (I’ve just had a gastrointestinal study and seemingly am supposed to have another one soon. I’m scheduled to see my GP next week, likely to do more than just the one blood test I’ve asked her to order.) There’s just something very odd about being diagnosed with (and treated for) the stomach bacterium Helicobacter pylori (which can cause ulcers) and then shingles within a six-week period. Neither infection is the kind of infection that you just get from someone else – they’re the kinds that tend to linger in your body and emerge, one day, for reasons we don’t yet understand fully.
Work has become stressful in a new way: I have been feeling too close to the research materials (studying human biology: totally weird) because of the medical aspects of some stuff and my being a patient so often these days and because of the genetic ancestry stuff I’m doing that makes me feel too much that I’m alone in my lab group as not-male and not-100%-European. So at the end of the day, I’m usually in physical pain and have a hard time being thoughtful. This is made worse by the fact that the frequent vomiting makes it really hard to find foods that are nutritious and satisfying, and water sometimes triggers vomiting, so I’m not eating or drinking consistently and am spending my evenings sitting on my couch playing video games, watching TV, or reading fiction.
In the meantime, my life as big sister is…interesting. I mentioned that I wrote a little book that’s meant to be a casual introduction to my sister’s life, from my perspective, and since my family has been interviewing a whole lot of staff in an effort to replace people who are not working out, I’ve heard from a lot of new people that they like the book. Nice to hear, but I’m not sure how much of a difference it is making in my sister’s interactions with those people. Watching from the sidelines makes me want to sit down and tackle the draft of how people treat us based on how we look or seem to them, because, wow, I’ve learned a LOT about how people see my sister in these last few weeks. I am thankful that Lily has remained a pretty dynamic conversationalist on the phone; it tells me that no matter how frustrating her staffing situations might be for everyone involved (I consider these poor matches that strain staff and client both), she’s still paying attention and thinking and in relatively good spirits.
And my mom came out to where I live to help me deal with the first GI exam, because I had to be under anesthesia, and they don’t let you leave their office alone after that. It was immensely gratifying and still is really hard to cope with my mom telling me not to feel guilty that I am struggling and need help, even if she and my dad are always busy taking care of Lily in one way or another.
So: plenty to write about here, and insufficient resources to get that done in a timely manner. Maybe in the next couple of weeks I’ll start getting back into blogging, as this work project winds down. (Not that I’m going to hold my breath!) But I’m still here and Lily’s still doing her thing, despite everything life has thrown at us recently, and I’ll share more of our stories when I can.
I’ve talked some about my struggles with anxiety and depression here, and my discovery that this is likely linked to fibromyalgia. I’ve been working with a therapist, and have been since a really awful depressive phase not so long ago that I needed help getting out of. This sets the scene: we were talking about Lily, and how I sometimes feel like my parents unwittingly have treated me as their primary supports. My therapist asked me whether I had extended family who could help support my parents, and I told her that they had sort of faded away years before.
Look, I know that Lily is a handful. She’s weird to look at, she’s hard to understand, she’s almost defiantly imperfect…and my family, like many people, values appearances and propriety and sophistication. (Well, the family I know. We’re/I’m estranged from a number of them.) Lily doesn’t fit into the paradigms that I see my family claiming.
Despite whatever other impressions I may convey here or the frustrations I may experience, I feel like my nuclear family really is one of the best on the planet. When I visit them, we’re just fine without anyone else around. We have lively conversations, we laugh and fight and play, we cook and eat, we garden and go for walks and watch movies and do normal life stuff. It’s great.
But my feelings about my extended family are much more complicated. Some of them are awesome people, the sorts of personalities that I can remember knowing were kind even as a small child. Others are just not the sort of people with whom I would normally choose to spend large chunks of time. This impression has just grown over time, as I’ve grown. Look, my family are generally good people, but honestly? I think some of them have struggled with Lily, and with the general vibe my family gives off. (I think we’d be black sheep even if Lily were less obviously different. I should also probably mention that one side of the family is also more distant because they’re (a) more physically distant and (b) there’s a difference of religion.)
Allow me to give a little background: I consider myself to be the “grandchild” generation. I was the second grandkid and the first girl. The boy that came before me was born with severe disabilities. I remember spending time with his family after Lily was born (I don’t remember anything – I think – before her birth).
I can be honest: I’ve spent far too much time resenting their behavior, rather than accepting them for who they are and relating to them on their own terms. My ideal is believing that in a society like the US, we should never compel any one person to care for someone else against their will. That works out okay if other people want to help; if others don’t, though, it gets really messy, really fast. (Which I’m sure you’ve noticed as I’ve talked about my own feelings about caring for my sister!) I’m trying to let go of worrying about my nearly-absent extended family. It feels like wasted energy, now, and because I have some of the best friends a woman could want and we live in the US, which does sometimes try to take care of its own, I can let go of some of my anxiety about being there for my sister, or for my parents and they take care of Lily.