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.
Scenes from an active mind feeling fractured; this post does not flow well because my thoughts are not flowing well right now, but I think…I think I want to say it all, this way, anyways.
I’ve been in pain a lot recently – emotional as well as physical, and at times it’s felt…dangerous. Dangerously alone, fighting for control of situations I can’t control. What I crave is the safety to cry, to be held just tightly enough in the arms of a lover that I don’t have to think in order to feel myself not being alone, but gently enough that I have space to sob until my emotional pain, somehow, becomes physical, and fades.
Of course, I can’t have that; it’s magical thinking, I’m single, when I cry my sinuses fill almost immediately.
When it does come, catharsis comes at bad times, very often late at night, adding to the difficulty that is sleep. (I’ve been having nightmares recently, and there seems to be clinical evidence that sleep is disrupted in people with fibro.) It’s a horrible boom and bust: can’t fall asleep due to physical pain or anxiety, can’t get out of bed until late because of the need for sleep, not sleepy the next night when it’s normal bedtime because of sleeping in.
The pain was really bad while I was reading an amazing book – The Empathy Exams, by Leslie Jamison. It’s a powerful collection of essays, exploring, yes, empathy, but through lenses of pain (chosen and unchosen), incarceration, pushing yourself to the limits of endurance. It touched my sense of pain really deeply, evoked too much sympathy or empathy or whatever; I felt querulous and depressed while reading it, while simultaneously intellectually stimulated and relieved at recognition.
The pain is opposite around most of my friends; not everyone knows about the fibro, and I don’t feel able to be truly open and honest about my symptoms with more. Facebook can feel like a minefield: new pregnancies and births remind me that I’m aging and now have a chronic health condition that might preclude pregnancy or childbirth (LONG wished-for); weddings and vacations with friends can sometimes sting, alone as I feel (and as worried about money as I am). Someone said something about realizing that health is wealth, recently, as so many people share platitudes in graphic form about their luck or fortune at being healthy…and I am concealing a chronic condition.
Of course, all of the sponsored ads and posts from the few support groups/fibro/chronic illness/invisible illness groups I’ve joined? Sometimes they remind me that I’m not doing so badly – I’m still working full time, I’m not yet charged with Lily’s care, right now those I love most dearly are alive. I can afford to live in a place where I feel safe and comfortable, have health care from my job, and I can pay for my medications and health care.
AND – it MUST be said – I am still capable of being delighted by the good news and celebrating with my beloved chosen family and less close friends the wonderful events in their lives. I can support friends who are learning to accept themselves or others through the lenses of those platitudes, or who are trying to create more joy than sorrow by expressing positives. This is all possible, devoid of the jealousy or bitterness about my lack that I am currently fighting. Sometimes it’s closer to a 95%/5% YAY/BOO balance, but that I can handle – then I can join in the cheering while hiding my own pain, which is totally appropriate. Everyone does it.
It’s hard to think of yourself as lovable when you’re this deep in pain and so socially isolated that you sink into it psychologically. I’m never quite sure if I lack the energy to go out and be social, or if I think I will lack the energy and miscalculate, or (and this is the real fear) if I think I will lack the energy and that thinking causes my body to act as though I don’t have the energy. Walking to work in the morning feels awful, almost always, but I feel better several hours later, which adds to the confusion about whether I should rest or exercise during these phases.
Which leaves me here: locking into my own mind, hearing my jerkbrain insist that if I had any chance of finding or meriting love BEFORE – when I was already unsteady in myself as a genetically biracial woman raised only knowing half of the family, Jewish and valuing that, daughter of a woman with a degenerative neurological disease that THANKFULLY is held at bay by drugs, and big sister to Lily, complicated if wonderful person that she is. Now, I have fibro. Yeah, dating sure is fun. (Insert a rather sour expression here.) Feeling like a failure at dating is hard to stave off when you haven’t figured out how to leave the pain behind. I remember venting to a friend that nobody would want to have sex with a woman who needs to wear gloves at night during the winter in order to avoid finger joint pain; I know that I weigh more than I might otherwise because of the challenges of physical pain from exercise, medications, and strong food cravings that may be partly shaped by the fibro and/or the meds.
A variation of my daydream-nightmares is that I fail to find a partner, fail to keep a job or earn enough salary to support a family – because Lily is my family, and I need to be able to support her. One reason I seem to constantly be pushing my diagnosis away is that I can’t believe that after 30 years of life with Lily, I am no longer the healthy one with the brilliant career path possible. I love the work I do and find it to be incredibly important, but I know it’s less valued – intellectually, financially, and socially – than the job I had been aiming for.
I know I need to be working with a therapist because not only do I need to have help in handling this. I don’t want to. It takes time and money, it takes opening myself up again (AGAIN) to a new person. I don’t want to go to a therapist because I want to feel normal. Normal people may not actually manage their emotions perfectly, but there’s at least a facade of managing.
It’s hard to talk to people about it because I have empathy that they don’t expect. I understand something about the morning sickness of pregnancy because I’ve spent months vomiting on a daily basis. I understand something about toddler behavior because my sister is developmentally locked, in part, at that age. When I try to express this, I am sometimes rebuffed. I am afraid of that, so I hold back. Sometimes being smart enough to see the connections hurts, when people on the other side of those potential connections do not see, or do not want, to connect. (Don’t you love my elitism? Yes, I work to moderate most of it. Some of it is my philosophical preference.)
I know I am managing to proceed with my life, out of control as it feels. I know that the fracture lines are imagined or felt but not concrete, even if the pain is, very often, quite real. I hope it’s okay to say all of this; I need to be able to talk about it somehow.
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.)
Despite the fact that I’ve posted about admitting that something is wrong and getting over being worried, I think I should say this explicitly: I was diagnosed with generalized anxiety disorder a couple of years ago and have been working with psychologists and psychiatrists (i.e., using both talk therapy and drugs) to treat it. This diagnosis came a few years after a diagnosis of an episode of major depression; I’ve been using therapy off and on for almost 12 years now, since my second semester at college.
I’m not sure whether this is something that’s especially common among siblings – maybe readers out there in the ether can provide information? – although I know I did participate in a survey about depression and anxiety in adults with SWD several years back, and got the sense that it was common enough to merit study. (Interesting memory: there wasn’t enough room on the paper form for me to describe Lily’s conditions, so the person who was conducting the study emailed me. I think she understood why I had chosen the language I had after I listed the major points of interest…) Honestly, I think I would have struggled with anxiety and depression were I an only child or if I had had typical siblings, although I imagine it might have looked different, because, well, I’ve been this way as long as I can remember. (It’s taken me awhile to realize this, but there are anxiety and depression and related conditions on both sides of my family.)
It would be very interesting to me, as a biologist, to understand how much anxiety and depression are due to intrinsic biological attributes of a given individual, and how much they are due to things like growing up with a SWD. (Otherwise known as “nature vs. nurture.” My own take on things is that, like just about everything else in biology, there’s some role for each in just about every observable phenomenon.) Perhaps I wouldn’t struggle so much with anxiety now if I had grown up without my sister’s epilepsy as a semi-constant reminder that Things Happen Unexpectedly. Perhaps, given my penchant for worrying over things like scientific and general illiteracy in the US and how to solve them and whether I’ll be able to hire undergraduate assistants who haven’t succumbed to societal pressures not to be smart, what would happen if someone broke into my parents’ home and killed them while I was away, whether we can actually protect ourselves against opportunistic microbes that live in plants, what would happen if a comet were headed for Earth, and then some…like, every night before I go to sleep, and this has been the trend for much of my life…well, you get the picture. I pretty clearly was never going to grow up to be anything but anxious. 😉
I mention this partly out of honest curiosity about what other sibs think about their lives and mental health, and partly because right now I can tell that I’m facing some sort of psychological distress that makes it difficult for me to want to post anything here (or pretend to moderate comments with what I consider to be efficiency). I’d much prefer to discuss the former. Popular understanding holds that women are more likely to be depressed than men, and that women are more likely to be caretakers than men. Do these ideas hold true? Do they have any relationship to each other? Does the fact that my sister has neurological problems say anything at all about what genetic influences have affected my own brain’s development, or was it just unlucky chance? Do other sibs feel like they didn’t experience anxiety or depression until well beyond childhood, or were there early indicators? My personal experience, as I’ve mentioned, was that I didn’t fully internalize that Lily and I weren’t quite like other sisters until after my labeling as a worrywart by my third grade teacher. I knew she was different, but really didn’t consider that I would be shaped by her differences until I had already reached adolescence, and in some ways, not until I had reached full-on adulthood. (As much as a lifelong academic can be said to have achieved this. Yes, that was an attempt at sarcastic humor.)
In sum: Lily has a whole huge list of disabilities and medical conditions. I have an anxiety disorder. She fusses about me, I fuss about her, and I write about that here. Ta-da!
I…well, I have been diagnosed with a generalized anxiety disorder. You won’t hear me refer to myself as a PWD, because I am so guilty about being imperfect (note: this is my skewed perception, not my objective description) that I refuse to consider that I could need help when others are so much more deserving or needful. Like Lily. I mean, me? I can go to counseling once a week and make progress towards controlling the anxiety. Lily has been on anti-convulsants for most of her life and those seizures sure as hell aren’t what any of us reasonably considers more than nominally controlled. (Just about every night between 6-7pm, I’m told, is her “normal” prime seizure time these days.) So, sure, I cling to my denial for all it’s worth. I’ve briefly mentioned that my mom has MS. Dad and I are the “healthy” ones in the family, despite my fun times with frequent infection during the final days of my doctoral work; neither of us has chronic health conditions that are noticeable. (My heart murmur and his lack of gallbladder are Just Not That Big of a Deal.)
So you can imagine how surreal and painful it was to learn that my father has been diagnosed with diabetes.
On my mom’s birthday.
During my phone call to wish her a happy birthday.
SCANT HOURS AFTER MY THERAPY SESSION FOR THE WEEK.
Little Scientist Elysia came out the day after this revelation and decreed that Dad has, in fact, prediabetes, since that’s what the Mayo Clinic calls his symptoms. (Denial is SO GREAT!) But still: now the third member of my nuclear family (that isn’t me) has a chronic health condition.
Tell me: if I can give myself permission to call my anxiety a chronic condition, and my family a fairly ordinary middle class American family, then we all have chronic health conditions. Is this your family, too? Is this many of us? Most of us? Maybe typical really is synonymous with having some medical condition. My grandmother’s allergies? My aunt’s need for glasses from childhood? My other grandmother’s diabetes? Great-grandmother’s alcoholism? My cousin’s Asperger’s? Hell, in my office, three of us have something interesting in our medical files, and I don’t know the fourth person all that well.
I have a lot more to say, of course (I’m nothing if not a talker), but right now I just want to scream at the world that this sucks. The timing sucked (having a cancelled date hours after getting this news…?), and the consequences for us all suck, and just about everything about this in a larger societal sense sucks. The only thing that doesn’t suck: Dad is already seeing improvements in his health stats.
I will end this post with this thought: given the right set of definitions, we are all PWD, which makes our treatment of fellow humans with more obvious or nominally more difficult to deal with disabilities that much more reprehensible. (Elysia, PhD, will say that this is not surprising, given what she knows about the evolutionary genetics of humans.) Here’s to hoping that someday blogs like mine become irrelevant as people figure this out and live up to the compassion to which we aspire.
Note from Elysia: I wrote this in a fit of pique a couple of weeks ago. Since then, I’ve thought that perhaps a lot of my emotion was misdirected, and that I was not reading satire as satire. I am also still rather confused by what I am supposed to think about Sue Sylvester’s character – unless the writers are trying to make her inconsistent? Regardless, I do feel like the writers may sometimes slip from satire into mocking, and I’m posting this so that interested readers can make their own decisions.
May contain spoilers.
Please, PLEASE get off of my shit list. I really love the music, because it totally appeals to my almost-30 year old self – songs from my childhood and songs from my current life, with some talented performers. Great example: the homage to Madonna in the most recent episode (“The Power of Madonna”; link goes to Hulu). Yeah, I totally recognized all the images from her videos during the hallway walkthrough, and I laughed, and I sang along with almost every song. But you know what? I didn’t so much like the way you dealt with misogyny. Seriously…did you LISTEN to yourselves? You had one or two really awesome lines, with real feminist thought. No – make that adult, human thought. Like the fact that privilege blinds you from even seeing that other people might experience something different.
The attempt to deal with sexism gets points from me for trying. Few points, due to the massive failures, but points. You get zero points for dealing appropriately with siblings with disability. And since this is my blog and it’s about my experience as a sibling to a woman with disabilities, I get to display my emotions and tell you how I feel about the way in which your show represents people like me.
Let me be clear: it is pretty much AWFUL. I get that Sue is a personality who is generally abrasive and crude. I often appreciate the humor in her lines. This “handi-capable” shit? Incredibly insulting. Making light of the struggles that siblings face growing up? Even worse. I won’t speak to the comments about being neglected by parents, but you absolutely horrified me with the weird way in which you presented that revelation. Yes, yes, I saw the episode where Sue visits her sister. In an institution. It’s clear from the way that episode played out that she wasn’t exactly the most present sister. It’s also crystal clear to me that nobody knew about Sue’s sister. The revelation that Sue had a sister with special needs got totally blown over in favor of…a plotline largely focusing on a hairstyle.
I get enough crap from people who immediately assume that living with my sister was a blessing that I was given because I can handle it, or a curse, or that it made for a sucky homelife. My relationship with her was, and is, complicated, and I know that it’s a hell of a lot better than many, many siblings have. Lily loves me, and I love her, and we’ve had a great life so far, all things considered. I will freely acknowledge that my relationship with her is as different from other people whose siblings are atypical as any typical sibling pairs are from each other. It’s possible that what you showed represents some other siblings’ experiences. But I felt like your portrayal of Sue and her sister made a farce of what my sister and I have lived. (And yes, I felt deeply uncomfortable with the big reveal of Sue and her sister when I first saw that episode (“Wheels”). Ask my mom; we talked about how weird it made me feel.) Lily isn’t someone to be pitied, I couldn’t quite tell if I was supposed to pity Sue’s sister. (I have learned from Wikipedia that her name is Jean. What does it tell you that I didn’t even know the character’s name without looking it up?) If Jean has Down Syndrome, I have a hard time believing that Sue would be a total misanthrope…with the exception of people with her sister’s diagnosis. Again, I can’t and won’t speak for all people whose siblings have disabilities, but that was a real stretch for me to believe.
Plus? Not cool, the way you dealt with Will and Emma. How, exactly, is it better for Will to tell Emma that she needs therapy before they can sleep together than to push for sex on what’s really their first date or to bail on her immediately when she says she’s never had sex before? Having been in and out of therapy for years, that one hurt. We need to see more from Emma’s perspective – I want to know, as a viewer, whether she is ready to seek counseling. I want to know if she sees herself as “crazy,” or if she sees herself as a woman who treats her world in a particular way. Having been diagnosed with an anxiety disorder that absolutely affects my love life as much as Emma’s way of processing the world affects hers, I can tell you that I would have (and HAVE) been horrified by boyfriends trying to fix me, without regard for whether I thought I was broken or was ready to be fixed. Trust me, it’s a huge decision to go to therapy, and to really use it to change who you are. It is an immensely intimate relationship. I’ll grant that you could have handled that part a lot worse, but you could have handled it a lot better, too. If I were Emma, my need for order and clarity would have meant I would have known my health insurance policies backwards and forwards. If I were Emma and wanting to have sex with Will and knew my current self wasn’t ready, you can also bet that I would have started trying to find a therapist or a way to help myself reach my own goals.
Some of your previous episodes and PR materials have run afoul of a lot of your viewers. Please read up on the commentary over at FWD/Forward to hear from self-identified women with disabilities if you haven’t already.
Please, please, PLEASE – if you read this, think about it. When it first premiered, I loved your show. I love the potential power it has to poke at social constructions and how we treat each other and how some really talented singers and songwriters have helped us to understand that. It would make me happy if you could be honest enough in that view to treat the issues fairly, instead of what I fear are ratings-friendly decisions or choices meant to simplify your plotlines. Life is messy. It’s okay if television show plots are, too.
Note: this entry dives a little deeper into my emotions than some posts, so there’s a good chance there are extra typographical errors or weird patches that I may come back to correct later.
One of the more uncomfortable internal dialogues I’ve had over the last, oh, twenty years has been the issue of whether something could be seriously wrong with me. I was convinced for about five years that I could have some latent form of epilepsy, since Lily’s seizures had come and gone. It was just a matter of time, I told myself, before some new trigger would arise and – boom! – I’d have my own seizure disorder. I gather that this isn’t unheard of among siblings, particularly when we’re young, this wondering if medical issues are something only having to do with our sibs, and not ourselves.
Around the time I hit puberty, I managed to convince myself that sexual intercourse and orgasm, as an experience set that I had yet to fully understand and experience, could somehow be a trigger for this lurking epilepsy. (You’d think my early interest in biology would have helped me to avoid such thoughts, but it was surprisingly unhelpful. And yes, this set of worries has since been allayed, but not without some damage to my love life.) You may remember my fear that using a dusting aid triggered Lily’s spectacular seizure a few days before my sixteenth birthday; that was related.
I guess one of the root issues is that I grew up in a family where I probably learned all too quickly that life changes, and changes fast, sometimes in unpredictable ways. Earthquakes happen (I grew up in earthquake country). Seizures happen. We can’t predict them, general havoc may ensue, and we just have to learn how to prepare ourselves. Unfortunately, given what I suspect were my predilections for worry and overthinking, this realization didn’t translate into an attitude of carefree adventure once preparations were taken – it turned into a nagging uneasiness. There are absolutely days when I’m overtaken by the notion that even if you do everything perfectly, the whole world can still go to hell.
By this point in my post, you’re probably not going to be surprised that I’m currently being treated for generalized anxiety disorder. Sometimes I worry that it’s a self-fulfilling prophecy – that I have been so worried for so long that something would become wrong with me that the worry itself turned into something that is wrong with me.
As I was recently commenting to some friends, according to the Mayo Clinic^, I meet most diagnostic criteria, and probably did as a child, too. It was only in recent years that I shared with my parents my great fear during the fireworks on a Fourth of July: having just learned that a federal holiday meant that everyone had the day off, I assumed that everyone had the day off, including police, fire, and military. My feeling was that because nobody was paying attention, it was the perfect time for bombers to attack (can you tell I grew up during the tail end of the Cold War?) What’s particularly interesting about my diagnosis is that I don’t see it as something that’s wrong with me in the way I view Lily’s epilepsy or blindness, or any of her other medical conditions. It’s just something that’s happening that I’m trying to manage and overcome.
That said, what I feel also fluctuates from day to day: sometimes it’s a relief to have had a doctor say that there’s something wrong, because it makes a lot of little pieces make a lot more sense. (Not to mention, I like the vanity that it’s not my fault that I feel so miserable sometimes.) More often than that, however, is a conviction that pairs nicely with “this isn’t a disease!”: that as the typical (and older) sister, I can’t have anything wrong with me. It’s not fair. It’s not fair to my parents to have two broken children. It’s not fair to Lily, if her sister needs help, especially with a comparatively less damaging set of problems. It’s supremely unreasonable for me to feel relief that I’m like her, or that somehow now I merit attention, because I have been given a diagnosis.
Maybe someday I’ll stop worrying about all of this. At least the part about spontaneously developing my sister’s conditions. After nearly 30 years, I haven’t had much more exciting happen to me medically than valley fever and 2009 H1N1 influenza (oh, yeah – swine flu, baby!), and the odds of developing a congenital disorder at this age? Yeah, not so high, except for things that happen to people as they age. And in that – I’m not alone. I guess that’s small comfort for my closing thoughts, but this isn’t an easy emotional state to resolve.