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 have not been blogging recently. I have, instead, been on vacation, moving to a new place, starting a new job, and dealing with intermittent internet. Now that my life has calmed down a bit, logistically, I am getting back into writing. I’ve got a post in prep about how moving for this new job has made me think about my relationship with Lily over the years since I’ve left home, and what that might mean for us going forward. Part of me likes that we get to be something closer to “normal” sisters, these days, although we definitely are not like a lot of siblings. Anyways, more on that later.
In the meantime, a question! As you know, I’m a scientist at my day job. As part of that work, I read what are called journal articles. For the uninitiated, scientific journals are where we publish the results of our work. (The remainder of this paragraph will give an overview of what that means; the questions are in the next paragraph!) They physically resemble something halfway between a collection of short stories and a popular magazine, like Vogue or Popular Mechanics, and ultimately kind of make a giant Wikipedia-like body of information about all sorts of science. In brief, we write a document that gives an introduction to what we’ve been doing and why other people should care, how it relates to what’s been done before, the details of what we did, what we found, and what we think it means. We submit those to journals whose audiences would be interested (I publish in journals focusing on evolution and genetics, while a friend of mine publishes in atmospheric and climate science journals), and editors decide whether they’re appropriate for consideration. Papers they approve get sent to other scientists, who evaluate and criticize the papers, and the editor takes that into account and then either accepts the paper for publication or rejects it. This is a pretty nifty system, because it means that we get reviewed by our peers – fellow professionals who understand what we do and can help ensure that our database of What We Know is as accurate as we can make it. (There are, of course, politics and personal issues that can arise, but hey, we’re humans, and we as a community do try to constantly improve.)
In my inbox today was a journal about how communication happens within and between cells. There was a tantalizing title about using a common anticonvulsant as a treatment for multiple sclerosis. I say tantalizing, because Lily happens to take this drug (valproic acid, under the name Depakote), and our mom has multiple sclerosis. As a geneticist, I’m (professionally) fascinated by how different outcomes of health and appearance are generated by the same basic instruction set (i.e., DNA) (my current project is even studying human DNA!), and personally, I wonder how my mom’s MS might relate to Lily’s epilepsy (and my fibro). So, my questions: when I find these papers, would you, my audience out there in the ether, be interested in hearing about them, and my thoughts about it? Are there topics that fellow siblings or others in the community or readership would like to hear more about, from a casual but professional perspective? This is non-trivial work, so it couldn’t be a super responsive or frequent feature of the blog, but I feel like I should put my training to use for people who could benefit from it!
Leave a comment or drop me an email and let me know what you think!
An essay by Sarah Eyre, who experiences seizures as part of her multiple sclerosis, and whose friends have responded in a variety of ways.
Item: I mentioned recently that I had a great first date with someone, and that Lily had come up and it was a little weird to talk about her, but it was okay. I am pleased to report that the man with whom I had said date and I have now had a much more detailed chat about Lily; he did see some pictures of her on a social media site, but we actually also just were talking about stuff and the chance came up to discuss her. So we did, and he asked good questions, and said good things. I kind of hate phrasing it this way, because I’m not sure it conveys my feelings accurately, but I use people’s reactions to Lily as a kind of litmus test: if you can’t accept her existence in my life, at least, and her importance to me, you and I are not going to have a very deep relationship. This guy seriously impressed me by treating her as “just another person” in my life and as her own fascinating person, while acknowledging that growing up with her means I’ve been through a lot of stuff that has been…challenging.
Item: Lily had a hearing, or part of one, or something – yeah, I wasn’t there, I’m not sure about it – anyways, she had a thing during which her advocate and my parents and she and her staff and representatives from her current program and people with a legal role in her life were present. It always makes me laugh that a major criterion by which the state judges fitness for an independent living program is the ability to direct one’s own team, and that people assume that Lily can’t do that. She’s one of the best manipulators I’ve seen in action, and if she’s not controlling the room, she makes you know it. Zero question that she can, and does, manage her staff. Apparently, the legal people were able to see that in how she behaved, and I understand that she is not going to be denied the ability to be in an independent living program, for now. It also sounds like her current program won’t terminate her services until she’s got new services in place, which is a huge damned relief for me.
Item: we are now a couple of months out from the local walk to support the National Multiple Sclerosis Society. I have just registered myself as a team captain and am about to gear up for the event in my area (hoping to do a fundraiser this year, and maybe print up shirts for team members). I’ve been using a science theme for the past few years (big surprise, I know) and am delighting in the idea of sending out emails on Saturday to announce my current plans to friends and family. (Saturday is the 202nd anniversary of Charles Darwin’s birth. And Abraham Lincoln, too, but more people know that.) I won’t post a link to my team here or ask you to support NMSS, but I will say that if you’re reading this, and you’ve got any cash or time to spare, there are some really good causes out there that can use it.
And that is the news that I found relevant to share today.
My mom is superbly exceptional. I know, I know – many children say this, especially during their cultural moments of recognition for maternal care. But my mom really is super damned special.
Regular readers of this blog know that it’s not always easy for me to get along with my sister. I’m often resentful of her medical needs taking precedence over my desires (and sometimes legitimate needs for parental assistance). It can’t have been easy to be our parents, especially when we were young and both needed so much. Help me with math homework? Home physical therapy exercises for Lily? Mediate when Lily’s fascination with ripping paper collided with my love of reading? (It was the last page! The very last page of Charlotte’s Web! I loved that story. And no, I haven’t quite given up my frustration with her. *grin* Although I do understand it, and it happened some twenty years ago, and I have forgiven Lily for this offense.) Being a parent to a child with special needs is just as drama-filled as being a parent, period. Sometimes more. Being a parent to a child with special needs and a child classified as gifted? Whooo, boy, yeah, that must’ve been tough!
But my mom did it, and still does it. Baking cookies with Lily! Helping me pick out a perfect birthday cake recipe for a friend! Letting us each talk on the phone whenever we need to! Some of this is surely due to her profession, and the patience and creativity required for it. But really, my mom is just the best. She did everything she could to help me be my own person. (Okay, Dad, too, but this is about Mom.)
The most heartbreaking thing for me is that she did all of this with so much love, grace, and patience, and for years struggled with undiagnosed multiple sclerosis. (She was officially diagnosed at the start of 1999, when I was in college.) Full time job. Cooked and cleaned. Was fun. Played the piano on holidays, the same songs over and over while Lily and I sang. Put up with each of us and our self-pity and medical care and needing of hugs. And managed to maintain a happy, healthy marriage and longtime friendships all the while.
So here’s to you, Mom! If I ever have my own kids, I can only hope to be half as good a parent as you’ve been. And when people tell me that I’m like you, it’s one of the best compliments they could ever give. Happy mother’s day!