It’s a shameful secret of mine: I had, for so long, been estranged from my grandmother that when she died two years ago, I was more concerned with my mother’s and sister’s grief than my own loss, and aside from a night or two, didn’t feel like it was a loss. I was sad, sure, but so much of it was that I couldn’t stand the idea of Lily needing to be told she couldn’t talk to Grandma on the telephone for the sabbath, as she’d been doing most weeks for some time. (Describing death to someone who doesn’t actually understand time is hard.)
I knew my mom loved her own mother. I knew their relationship had not been as truly felt and pleasant as the mother-daughter relationship she and I have. The details…they’re more salacious than relevant, but they do sketch a life that had its mistakes. Personally, I harbored, since my early teens, a real scorn for my grandmother, who wanted to make my mom do things like remove any facial hair from Lily. I knew how hard her daily regimen was to maintain, and in my proto-feminist state was angry that we had to do anything more to make Lily conform to a society that was willing to reject her based on her appearance. Internally, I also knew that a pretty hair bow or perfect skin wouldn’t be enough to make Lily fit in, given her facial asymmetry and unusual speech patterns.
Part of me hated my grandmother for smoking while she was pregnant with my mom. My proto-biologist self learned in school that a girl baby is born with all of the egg cells her body will ever use, which meant that the carcinogens in cigarettes could have caused mutations to the egg that was my mom’s genetic contribution to my sister. (For the record, I don’t know, as a grown-up and professional biologist, whether this is actually possible. I can’t rule it out, based on my knowledge, but I’m not an expert in that area of biology.) It doesn’t help that I heard her speak with regret about smoking during her two pregnancies. It really, really doesn’t help that I saw her fear of my sister, her inability to find a way to connect herself to this unusual little girl – a little girl who loved her utterly. (Lily, always the creative storyteller, spun an interesting one while in junior high – a story about baking Christmas cookies with Grandma after school or during the weekend. The teachers believed her until my parents pointed out that (a) we’re Jewish and don’t celebrate Christmas, and (b) we lived several hundred miles away from the grandparents.)
Two years after my grandmother’s death, I am finally letting go of some of that hate and fear and mistrust, because my own chronic pain may be linked to one she felt for most of her life.
Chronic pain…well, it messes with you. It feels alienating, isolating. You want to hide it, because it’s such a clear departure from what other people see as normal, and you want to work through it, because you’re stronger than it, damn it. (See also: the brilliant Captain Awkward contributor Sweet Machine’s response to a letter writer; the spoon theory entry at Geek Feminism’s wiki.) Mine can keep me awake at night, which I’ve now heard called “painsomnia”. I’m glad that sometimes I can talk to my mom about this – her MS also causes her pain like mine, sometimes. My fibro causes weird neurological glitches like hers, sometimes.
I grieve, now, for the fact that she didn’t get that kind of comfort from her mom.
Look, I’ve had my problems with my grandmother. That’s clear. But I was floored when my mom told me that, in confiding and explaining to her mother the way she felt when she was newly diagnosed, that grandma basically said, “So what?” It’s only after these conversations Mom and I have had recently, in which we can be more open about our symptoms, that we’ve both realized that it might have been Grandma’s reality. She just either didn’t know she was hurting more than “normal,” or otherwise had some block to being able to be communicative about it (or seemingly empathetic). (Yes, I’m still upset about this now. How could you be so dismissive of your daughter’s suffering?)
It was during that same several month period that my mom revealed to me that Grandma had shared stories about having to crawl up the stairs when returning home from school, as a youngster (not sure if she was a child or pre-teen), because of her pain. Mom seemed to be expressing some concern that we could have done more to find out why Grandma’s osteoarthritis was so bad, possibly more painful than other people experience, before it was too late. We both wondered if maybe she had a form of rheumatoid arthritis, especially since there is known juvenile RA. My professor-mind boggles to think that Grandma was born before antibiotics were discovered/purified, or second wave feminism, or Israel; what challenges must have Depression-era, then WWII-era (Holocaust-era!), American medicine and society presented to a young woman struggling with chronic pain? (There’s this, ahem, “interesting” pattern of women’s pain/chronic pain being disbelieved/badly understood.)
Suddenly, the self-medicating with prescriptions and/or alcohol fits into an all-too-clear, all-too-relatable framework. Maybe Grandma didn’t know how to talk to her doctors, and was in the pain I had before I got medications that actually control my symptoms. Frankly, it’s chilling. I can’t say I don’t feel tempted, sometimes, to drink myself into a stupor just to avoid the pain. (Drinking even half a glass of wine with a fancy dinner out, though, can bring on headaches and other pain, so I have learned not to keep that fantasy around. Plus, y’know, history of problem drinking on both sides of the family and wanting to avoid THAT drama.) Maybe it was hard for her to be emotionally present because of her pain; maybe some of what I thought was overly controlling behavior or too strong a value on appearances was just an attempt to hold on to the parts of life that didn’t hurt.
My scientist-brain is ALL OVER THAT set of revelations, of course. Three generations of women with sort of neurological disorders? It’s the kind of thing those of us with any connection to studying genetics zero in on. Our diets are not super similar, we were born in different places and had different social stresses etc., and different ages of onset of symptoms – but three generations? That suggests something inherited. (Insert a revisitation of how I worry over having my own biological children.) I’m ashamed of it, but I feel mad to have lost her just when I became settled enough to dig into the professional information that’s out there, to figure out what’s inside our bodies, linking us together. (Insert a revisitation of how glad I am that my main interest is NOT studying human biology. It’s so intense!)
Beyond my scientist-brain, well, this all makes me feel…honestly, a million feelings. It reframes this relationship that was not super, makes me regretful that I didn’t ask more stories about Grandma’s childhood. It makes me sad I didn’t know how to help bridge the gap between what must have been her fears about having children and grandchildren with pain or other qualities stigmatized by society and the reality of Lily’s life, or mine. (For all the venting and whining I do here, I really am in a pretty good place in my life and had an impressively good childhood. Ditto Lily.) Hell, I even wish I could have said more to her about being a scientist and how I could help her talk to her doctors! Or to have spoken to the nurses on duty in the places she was living, to provide the personal but informed details that make it easier to care for patients.
I am so, so sad for my mom; her support has been so amazingly important to me, through my diagnosis and learning how to move forward, and I know there’s got to be some sort of wound in her that she didn’t get that from her mom. It grieves me to think that I may also not be strong enough to, say, share this post with her (as of posting, I haven’t given my parents the blog URL), or to share these thoughts – whatever comfort I might be able to give in my own empathy might not outweigh her pain at reliving losing her mom, in all these days.
This whole story has been brought up to my memory by two things: the anniversary of my grandmother’s passing, and my sister having a change to her medication prescribed by her neurologist. (It’s causing not-unexpected and frustrating side effects, like making her sleepy all the time.) Having had some intended and unintended changes to my own medication regime in the past two years, I know – now – how much it can make you feel bad, or weird, or SLEEPY, or just like everything is a little bit off. It makes me feel bad about having not been gentler with her, before. (My emotions dictate that this “before” must be read as up until and including the past two years.) Lily and Grandma, both, in my memory, are associated from childhood with containers full of pills needed to cope with their bodies. I’ve got my own containers, now.
My life today is nothing like I dreamed it would be, except that I have a nuclear family I love and I do science. I’m still getting used to the idea that there’s something about my body that means I have a lot of physical pain in my life, including realizing how it links me to others in ways I’d never thought possible. I’m glad that at her funeral, I did get up to speak – for myself and for Lily, who probably won’t ever be able to actually understand but will ask if Grandma can come over at every holiday – and was able to say that Grandma valued what was beautiful. We didn’t get along well, but I think it’s okay to remember that she shared her stash of gumdrops with me and saved the Readers Digest magazines so I could read the humor collections. In her own way, she was trying to help me have the happiness of the pretty world she admired and wanted to inhabit.
And yeah, right now? I kind of miss my grandma. I wish I had known her better.
I think a lot of us sibs grow up feeling like we have to do everything on our own, because of the lack of independence so many of our sibs have had, and how often we get drawn into parent-type roles. So I don’t always use SibNet, as I’ve said, although I’m trying to re-engage, and I haven’t historically followed a lot of sibling blogs.
Things can change!
I just wanted to share this entry from a blog I just started following, called Say Hello, Yellow. It’s written by both a sister and a mom. How I know these people are my kind of people? They cook together!
Check out this recipe for banana oat cookies.
I may have to send this recipe to Lily’s apartment. She loves cookies, and this is a “safe” recipe for those of us whose sisters like to eat the unbaked cookie dough. 😉
Recently I had the great delight to see Sarah McLachlan in concert for the first time.
To give you a sense of what this means to me: the album Surfacing was the first brand-new CD I bought for myself, as a senior in high school. This was the age of Lilith Fair, which I didn’t get to, but my parents bought a concert DVD for us. The next year I started college and found that Sarah was only one of the voices who spoke to my young self about life, love, feminism, and belonging. We call them by their first names, mostly: Sarah, Ani (DiFranco), Tori (Amos), Dar (Williams). The Indigo Girls, as a duo, got their full name. I gravitated towards singer/songwriters: Lucy Kaplanksy, Tracy Chapman, Mary Chapin Carpenter. I’ve now seen Lucy Kaplansky, and saw a set by Dar Williams at a festival – but I’d never seen performances by most of these artists who are iconic to my feminist subculture.
Those artists, and my love of them, made an impression on Lily. To this day, many of her favorite songs are those I loved during my late high school years. She has some favorites from Surfacing.
Forgive me for that amount of detail; it makes the rest of this that much better. 🙂
So: I got home from the concert, high on feeling the sisterhood and warmed by the resonance of my progressing life with Sarah’s new songs. During one of my phone calls home, I was telling Lily about the fact that I got to “see Sarah McLachlan.” I asked her if she remembered what songs Sarah McLachlan had sung that she liked (musicians almost always get full names in our conversations), and could tell that Lily was…not really connected to the conversation. Trying again, I named “Building a mystery” as a song she had performed, and then, putting extra excitement in my voice, I said that she also sang “Ice Cream.” That’s a song I’d put onto a mix CD for my sister, because she’d picked up on it when I had the album on.
To my great surprise, my *mom* started singing it, trying to engage Lily. I take for granted that we all have memorized more of Lily’s favorites than we like to admit (she repeats them so often), but that really caught me off guard. Mom paused, and I figured Lily had just not felt like being part of the conversation.
…so of course, Lily just started BELTING OUT “Ice Cream.”
And now I feel like I’ve done an okay job being her big sister.
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.
I just read this amazing personal essay on The Toast, which I enjoy a lot, mostly for the stuff that’s silly.
My friend sent me the link, asking whether I’d seen it. She warned me not to read it at work, because I’d probably start crying. Smart, smart lady that I am, I started reading it while waiting for my public transit trip to work. I’ve had some emotional ups and downs recently, and felt…mildly depressed. Next thing I know, I’m standing on the sidewalk suppressing feelings of guilt, shame, panic, regret, anxiety.
Take that as my own “trigger warning,” or content note, if you’re like me: feeling like maybe you can’t have children, despite your deep desire (and biological signals) to have children, because of your life. That’s true enough for so many of us sibs, I know, having those conversations with ourselves; I’ve talked about it here! But I haven’t talked about the new fears, the ones that came with the fibromyalgia diagnosis. Can I consider pregnancy if I need multiple daily prescription drugs to control my headaches? Could I even consider adopting or fostering, given the periodic fatigue? (Which reminds me: I’ve been away from the blog a bit recently in part because I’m at the end of my semester and the grading and student emails and meetings and…well, it’s the end of the semester and I’ve been exhausted and unwilling to talk more than I have to all day at work. That said? Work seems to be going well, for now.)
I should give you the link! It’s by Anna Andersen, and it is entitled “Childless by Some Choice: Parenting and Mental Illness”. The author talks frankly about her nearly lifelong entanglement with bipolar disorder…and her more recent diagnosis with fibromyalgia. It was totally heartwrenching. I cried for a long time, in the privacy of my own home.
I don’t much know what to say, other than what I’ve said here, for now. I have grading to do still tonight, and I’m still feeling that bit of super-run-down that means I could sleep for 14 hours and wake up feeling tired, and I probably will hit that in a few days. I have a ton of new things in my mind about Lily, too, that I’d love to write here – happy stories and wonderful moments, not just sad stuff, which is GREAT. Maybe in a few weeks (fingers crossed).
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.