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.

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A little moment of sisterhood

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.


At the start of 2014, life stays complicated

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.


The day my sister had a seizure and I was a scared kid

Today is December 15, 2012. Here in the United States, we are mourning yesterday’s horrific and tragic mass shooting at a school in Newtown, Connecticut. Part of the conversation that has started in the immediate wake of this incident is what to tell children – and what not to tell them. There’s an idea that I’ve seen floating around that you have to shield kids from this, that they are too fragile to handle it, or that it’s not the kind of thing they should know.

When I read that kind of thought, I’m taken right back to my young self…forced by circumstance to confront something scary that a kid “shouldn’t have to” confront…

Here’s what happened: Lily and I were home from school. Just a nice afternoon. Mom and Dad were both at work, and we were with our very favorite babysitter. And then Lily had a grand mal seizure (in other words, the big kind). My babysitter, beloved as she was, was not someone who had any advanced medical knowledge, and English was her second language, so I think she was pretty freaked out. I was most likely eight years old at the time – definitely no older than nine – which means Lily was five or six.

I remember running across to the next apartment building to ask our sitter’s friend, another sitter, what to do. I don’t remember what she said, but I know her words triggered a memory: an assignment we had for school was to write down emergency numbers. I ran back to our apartment and called my pediatrician, who was also Lily’s pediatrician. My memory tells me that he instructed me to give Lily a Tylenol when she was able to swallow.

I know I also called my mom and dad, but it would have taken them 30-60 minutes to get home, if I recall correctly. Calling the doctor was a good thing. I’m still not sure why I didn’t call 911. (To be fair, I now know that calling an ambulance isn’t always necessary for Lily during her seizures.)

The babysitter, not knowing what to do, covered Lily with a warm blanket. Lily continued convulsing on the floor of our shared bedroom. Dad came home, and uncovered Lily, telling us that she shouldn’t be restricted or kept warm. (Too much heat may actually trigger Lily’s seizures.) Mom got home. Mom and Dad took Lily to the hospital.

My memory ends there. I’m guessing that the sitter stayed with me until someone else came to watch me – it must have been at least one parent, if not both, with Lily.

What’s funny is that I remember this incident with embarrassment. I felt so horribly frightened. I don’t think what I did was the best response. For some reason, I wrote about this for a personal memory writing assignment in high school, and my teacher left a comment in the margin saying that she thought what I described as the acts of someone who was scared and a bit cowardly was actually responsible. (Ha, and it JUST NOW occurs to me that this assignment may have predated our reading of Lord of the Flies, and that my teacher may have known that I was going to be able to answer the question about the epileptic aura scene. Which is a story I can tell later!)

So…clearly, I have a lot of thoughts and feelings about stuff that happens to kids that scares them. I wouldn’t wish this kind of experience on other kids. I know that I weirdly internalized the end of the Cold War and worried that on federal holidays, there were no police or firemen or military on duty and it was the perfect time for our enemies to bomb us, so clearly I also know that sometimes kids shouldn’t be exposed to things they just don’t have the knowledge to process fully. I’d never tell anyone that children are just miniature adults. I do believe there’s a kind of innocence to be preserved in the very young.

But I also think that *some* children need the truth, and that if kids do hear about things that are scary, sometimes, they can handle it. I was very lucky to have parents who could and would have these conversations with me, who could tell me that it was right to call the doctor and to explain (again and again) what it meant when Lily had seizures, and what to do in the future when Lily had a seizure and I was home with her. Sometimes, scary things when we are young can help us to develop healthy response mechanisms.

My heart goes out to the families and loved ones of the too many victims of the shooting in Newtown. I hope that the injured recover quickly and fully. I hope that everyone can recover from the trauma, or at least gets the support they need to keep going. I hope that we as a nation can have the many conversations we need to have to prevent further violent acts like this: how we treat guns, how we treat mental illness, what schools are for our children, poverty, and how these factors interact.


Elsewhere on the web…

When I was in college, I went on a date with a young man who told me he was impressed by something I did: I held the door of a cafe open for a woman who was pushing a baby in a stroller. I explained to him that it’s something I’m more aware of, because people don’t tend to hold the doors open for me when I’m out with my sister…you know, with me pushing her wheelchair. I think that’s enough to explain why I want to share this post from the humorous blog Not Always Right.

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I don’t like to give attention to people who do mean things just to be mean or to get attention. I will make an exception here, sort of, to link to an open letter to commentator Ann Coulter, written by John Franklin Stephens. Go! Read it now!

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You should totally also go read this piece entitled Black and White Vernacular in American Sign Language, which I came across thanks to Racialicious.

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Updated to add one!
I have some problems with this piece, but I think it’s worth sharing, anyways: The Disability Trap from the NY Times.

One bit that made me uncomfortable was the suggestion that people who are on SSI should have to try to work first, before benefits would be disbursed. That’s all well and good for people who can work and want to work – and the model the authors discuss (formulated by Richard Burkhauser and Mary Daly, per their reporting) would have been great for me when I was super newly diagnosed with fibro – it would suck for Lily. Don’t get me wrong, the SSI program as it stands doesn’t help my sister as much as it could. It’s stressful for my family that Lily gets a bigger benefit to rent an apartment than she would to pay a mortgage. (Maybe someone can explain to me the wisdom of preventing someone with medical conditions that won’t improve, ever, from having a home that isn’t immediately jeopardized by a loss of income. Yes, Lily is somewhat exceptional. Still, I am her sister, and sometimes, I get to care more about her than anyone else!) I hope that if SSI reforms are made that they can accomodate the range of what disability is, and how disability shapes life for each person dealing with it. (I should acknowledge here that the NY Times authors do say something about this in their piece. I did have a small moment of squick, though.)

It’s just a strange situation: people who want to work are limited by the red tape of the SSI program. People who can’t work are limited by the red tape of the SSI program. In a time when there’s a lot of noise about communities taking care of their own and a shrinking federal government…well, let’s just say that I worry for my sister.

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Work has been interesting and intense lately, and has taken up a lot of my brainpower, which was already diminished by weird weather in the wake of my nasty cold. More stories will be on their way soon!


Family June birthdays 2012

On the phone with me on Mom’s birthday:

Lily: Ellie, tell…ask Mommy Happy Birthday!

(I mention this because Lily has had a lot of difficulty with distinguishing “ask” from “tell” when she is speaking to us in the years since she started trying to separate the two. This is one of the few times she got it right…and didn’t think she had.)

Later…
Lily indicates that she wants more to eat.
Dad: What would you like?
Lily: I want birthday cake!

(I should note here that Lily’s birthday is before Mom’s. She already had her birthday cake and ice cream. Well, okay, birthday vegan brownies and ice cream. She didn’t care as long as she tasted chocolate and got to have whipped cream on top.)

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Mom told me that Lily seemed aware of time in a new way on her birthday this year. During the evening, Lily apparently told Mom that her birthday was over. And then asked if her birthday were “tomorrow.” (The party never ends with this one. *insert eyeroll here, from the decidedly introverted older sister to her extroverted sibling*)

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I’m the last of the June birthdays, so I get to reflect on the others before I hit my own “wow, I’m getting old” introspection.


My sister’s disabilities affected my college education

I graduated from college ten years ago. (!!!!)

That means that I arrived at college 14 years ago. I was less socially awkward than insecure to the point of debilitation about social interaction. It was rough, at first, and a lot of bad and scary and weird things happened during the following four years.

Let me tell you what we’ve been through together: physical assault, sexual assault, stalking, theft, drug and alcohol addiction. Onset – flares – remission of chronic migraine, colitis, PCOS, fibromyaglia. Ruptured ovarian cysts, broken bones, torn muscles and tendons, and other trips to the emergency room. We have lost parents, grandparents, aunts and uncles, pets, and other loved ones. We have faced challenges over and hostility because of our gender presentations, our gender identities, our sexual orientations, our disabilities, our racial heritage, our religions.

Of course, we’ve also been through wonderful stuff: finding love, meeting new friends, getting married, having babies, adopting pets. We’ve earned master’s degrees, PhDs, MDs, JDs, and opened businesses. Buying houses. Meeting our heroes. Landing awesome jobs, becoming internet famous, traveling to wonderful places.

In a lot of ways, we’ve grown up together.

Ten years ago, I left that place, but not those people. Sure, we’ve had disagreements or drifted apart, from time to time. But by and large, we’ve stayed connected, by phone and postcard and text and email and blog and social media sites and care packages and visits and, when we’re lucky, living close to each other. Thank you, all of you, for your love and friendship and support and for just being you!

It’s funny – deciding on a college was a horrible ordeal for me, in a way. I had worked hard in my younger school days, and had enjoyed it, and had gotten into most of the schools to which I’d applied. (Was it five out of six? Maybe?) I ruled most of them out, but then couldn’t decide between the school that would be close to home and less expensive but sort of “just” the next step in my career and not super thrilling and the school that would be far away and more expensive but had a romantic appeal to it. My anxiety spiked. I cried more than I like to admit. I sat on those cards – because at that point, you had to postmark a physical response card – until the last possible day.

The tipping point, in retrospect, was a huge moment in the development of my relationship with my sister and parents. It was when my mother told me to go to the exciting school. She told me that Lily would be my responsibility one day, and that I should take this chance to have my adventures. She pointed out that I was young and it was the perfect time to explore.

I can’t thank my mom enough – it turned out better than I could ever have expected. I think I’m better able to be a daughter and big sister (not to mention scientist and friend!) because I took that leap. And thanks again to my friends, who are, after 14 years, family, too.