It’s February, 2014: two years since my diagnosis with fibromyalgia, and fifteen (!) years since my mom’s diagnosis with MS.
I am depressed. Again.
It comes in waves, this depression. It’s particularly odd right now, because I am feeling stressed out and there are a lot of things that are making me anxious, but none of that consciously feels related to the thoughts that pop into my head. “I hate myself.” “I want to die.” “I’m tired of living.” I don’t; I just don’t feel well and want help.
Granted, I’m living in a place that’s cold right now, and having a lot of storms alternating with relatively warm weather, so I’m having a lot of headaches and joint pain. The headaches, called multifactorial by the neurologist, have migraine qualities and tension qualities and sinus qualities, so I have congestion and vertigo and light sensitivity and pain, pain, pain. Thankfully, if I catch it early enough, over the counter pain meds and careful doses of soda or caffeinated tea can help stop the pain, and the headaches are less frequent than before my current daily medication regime was put into place. Sitting with my legs crossed means knee pain; taking a shower means feeling cold all over and feeling cold for hours. Putting my hair up in a bun, often, means more tension and can trigger stronger headaches. I can’t easily join my colleagues in happy hour drinks or snacks unless I’m careful – any alcohol at all conflicts with my meds and there are foods that cause me to throw up, and some of those vary by my other symptoms.
And yet I am not trapped at home, or on even stronger meds, or in constant pain; my fibro seems to be on the mild end of the spectrum.
My denial – my lingering hopes that this diagnosis is wrong, or transitory and will soon be over – is the bandage that feels like it holds me together, some days.
Right now, I’m teaching. I have a 3/3 load – three classes each semester – and I’ve been released from one class because I was assigned a class three times larger than the other courses in my program. I have ambitious desires, as a college-level educator. I love science: I want others to love it, to stop being afraid of it, to become graceful and even better at it, depending on starting interest/competence level. I fear, deeply, that even this job, which feels like a step down, within the academic hierarchy, is too much for me. The headaches and pain have meant I spend at least one full day each weekend asleep, just to keep up with my body’s needs, and I’m struggling to keep up with grading. But these students: they are so amazing, and mostly, I feel like this is the right job for me, right now. (Amusingly, one of my anonymous student evaluation comments was that I was the first professor that this person had who actually understood disability – the student obviously felt like I was able to accommodate their needs. I am not sure which student it was; I had a bunch with varying documented needs. This doesn’t feel so much like an achievement to me as meeting my baseline. Can you imagine – me, not able to be a teacher who can’t cope with student disabilities?)
The terror in the back of my brain: this job is an annual contract job. Most of the jobs like this one are. What the hell is going to happen in ten, twenty years? Will this be enough to help my sister when my parents can’t? Right now, I still live super far from them – should I try to get a job there? What if I can’t? (Jobs like this that have benefits, or that pay enough to live on, aren’t particularly common, and I’ve not gotten even interviews with the places near my family when I’ve applied for those jobs.)
In some intense emotional discussions with friends this winter, I’ve come to the realization that I have problems understanding what it means to be a burden. That terror? That’s what it is: that I’ll be a burden. Much as I love my sister and would not ever want to call her a burden, her care is still a weight I keep waiting to land on me. If I need someone to help take care of me, how will I be able to take care of her? Turns out I am almost certainly wary of asking for help, even for just processing stress, from close friends whom I’ve known for more than 15 years, because of this fear. (I don’t have a therapist right now, but I have some recommendations, and I’m going to try calling this week.)
Here’s what’s almost MORE surprising than that: reading stories on SibNet’s Facebook page just makes me feel more embarrassed, if not ashamed. How can I be this worried, when Lily’s care has NOT yet fallen to me, and right now doesn’t seem likely to for some years? And at least Lily is verbal and semi-ambulatory, even if her seizures are still daily. She sounds happy, mostly, on the phone, even right before and right after those seizures. Mom and Dad are doing their best to keep her safe and to enjoy her still-growing vocabulary and sense of self. Which is all to say: there are support groups out there, but somehow I still feel alienated from them. (Hey, look, a therapy goal!)
(Does this all explain why I haven’t been blogging a lot? And with that, time to get back to work – it’s Saturday, but there are chores to do and I’m a faculty panelist for a student activity today.)
Right now, it’s late January. Next month, it will be two years since my diagnosis with fibromyalgia. It will be sixteen years since my mom’s diagnosis with MS. It will almost be an anniversary of Lily getting her own apartment – sad, isn’t it, that I don’t remember the date of that event, but I remember the diagnosis dates?
This semester I am teaching non-scientists about biology. I have a huge class (for me!) and I’m trying to get to know something about them all. I’ve been talking about Lily with some. Someone asked about stem cells and placentas (that could be a whole other post!) and that led me to hear about that student’s parent with a post-accident paralysis, and to share my thinking about Lily having been born with only a single eye. I wanted to convey to this student – to all interested students – that it’s slow, hard work, this science stuff, but we are people with disabilities and medical issues, that we are people who love those who identify that way, that our lives and our work are often driven by those experiences.
With the help of some friends, I am trying to organize my life and activities in a different way this semester. I’m teaching one class for a second time, which makes it much, much easier to prepare. I’m hoping that helps me have time to take care of myself.
I guess I want to share here that an intensely emotional conversation with a good friend a few days ago helped me to realize that more of my life than I like to admit has been shaped by the conviction that I must not be a burden, whether that be due to my feeling that I was to care for Lily or whether it was the worry that my toddler self must have felt about how much Lily needed.
It’s one of those emotional issues that’s been lurking just under the surface for a very long time, and it hurts to confront, even at a very minimal level. It shapes who I am in the classroom, who I choose to be in my job, how I interact with friends and family, how I do or don’t engage in dating, why I’m always worried about money, even when I’m doing okay…probably more than that! I’m really hoping to find a therapist with whom I can discuss these issues; it’s both a great thing and a terrible thing to value independence and self-sufficiency, depending on whether you accept help or help others, and whether it changes over time. I hope I can figure out how to reshape those feelings to make them work for me.
Other than that, there’s a lot that’s gone up and down in Lily’s life. She’s been injured and did okay recovering. She’s had more staffing changes. She’s continuing to play with small talk and sophisticated sentence structure.
Right now, I miss her a lot.
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.