How chronic pain is changing my opinion of my grandmother

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.

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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.

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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.

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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.