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.
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.
To borrow from a languishing internet meme: my fibromyalgia, let me show you it.
Seriously, though, today is National Fibromyalgia Awareness Day here in the United States. But just saying it doesn’t help you be aware of it in any significant way, so let me tell you my story, so that you’ll have at least one person’s experiences in your head.
First, a note: fibro has this lingering stigma of being a made-up condition. That’s not what all doctors think – and in particular, the rheumatology community acknowledges it as A Thing That Exists. It’s just been hard to understand, particularly since it depends on the subjective assessment of pain.
Okay, moving on.
For me, the early signs probably emerged during my bout with Valley Fever, back in 2005. I’d had my share of winter viral infections as a kid, and assumed it was just influenza – fever, chills, body aches – until, a few weeks into it, pretty much every inch of my skin itched. Happily, the student health nurse I saw recognized it immediately as an abnormal presentation of Valley Fever: after the initial fight, that looks like the flu, my body mounted an allergic response to the fungus. This was about halfway through my PhD, and so I just rested as best I could, got back to work and life as quickly as possible, and moved on.
That’s probably when I started to feel tired all of the time, though. The feeling that I just wasn’t rested became bad enough a year or two later that I had the doctors check my blood sugar (I have a high risk of diabetes on both sides of my family) and other general health markers. My friends wrote it off to stress; they assured me that when I had finished my PhD, I’d feel better. The stress probably also caused me to feel sick – fever, congestion, aches, etc. – about once a month for the last two years of my doctoral work. (A psychologist I was seeing at the time, though, wondered if I might have chronic fatigue syndrome.)
Fast forward to the summer of 2011: I had a sudden onset fever and just felt horrific. By phone, my doctor told me to take a certain amount of Advil, assured me that it was just a virus and I’d feel better in a couple of days. I didn’t. They did bloodwork. Turns out I had parvovirus – and my body’s response was so intense that I got a false positive for mono! That’s when I started to really feel tired all of the time, and when I realized that I’d been getting more frequent migraines that spring, and my eyes seemed to be bothered by light more than they used to. The parvo was almost certainly the straw that broke the camel’s back, so to speak.
I kind of wrote all of that off to stress from work not going well and family stuff (Lily was in the hospital – twice – and Dad broke his ankle that summer). Until I got viral bronchitis in the fall, which turned into bacterial bronchitis, which turned into a sinus infection, and I was wiped out and burned out and scared. I asked my doctor to start doing some blood tests to assess my immune system – Lily’s psoriasis and Mom’s multiple sclerosis are both risk factors for me – and something weird showed up that my doctor didn’t feel comfortable interpreting, and she sent me off to a specialist. (This happened between September and December.)
The pain in my hands started when I called that allergy immunologist to follow up on the bloodwork. She did more bloodwork, had me to scratch tests and injection tests (and boy, between my increasing body pain and fear of needles, was that an ordeal), and found nothing wrong with my immune system. She didn’t like that I hadn’t seen anyone for migraines, and sent me to a neurologist. He reassured me that I didn’t have any signs of MS but ordered an MRI just to be sure, and when I told him that my joint pain had gotten worse, he sent me to a rheumatologist. I should mention at this point that I had deteriorated so far that I was an emotional wreck and incapable of focus or logic at the levels I needed to sustain work, so I took an unpaid month off (February) to deal with my health. Much of this happened during that time, although it started in December.
The day I saw the rheumatologist, she was busy. She’s the chair of the department for the teaching hospital I was at, and the resident completing her training under the chair’s supervision saw me first. She was wonderful! She listened, asked questions, read my file. Then she started a physical exam. I was shocked and horrified at the intensity of pain I felt when she started pressing on various points of my body. She told me she thought it was fibromyalgia, and then took her notes to the doctor while I waited. The doctor came in a few minutes later, warm and cheerful, leading a group of three medical students when I gave permission. She was calm and certain about my having fibro. She ordered more bloodwork, as a last check, and a sleep study (fibro seems to disrupt the normal sleep cycle), and wrote prescriptions for physical therapy and water exercise in a heated pool. She also wrote a prescription for a painkiller (Celebrex, a common arthritis drug) and had me set up a followup visit, giving me a hug and saying that I would be okay as she led her students from the room.
I was bewildered and overwhelmed, but I went home and followed her suggestion of getting information from the Arthritis Foundation on fibromyalgia. I sent the website link to a friend while we chatted online about my appointment, and her response was, “OMG, Elysia – this is your life!” A few days later, the painkillers kicked in, and then I found a place to get physical therapy, and wow, did I start to feel better. I managed to get back to work, and to juggle my day job with looking for a position when this one ends. (I have just accepted a job, yay! And it’s one that focuses on data analysis, so it will be much easier, physically, to manage.)
This month – May – marks only three months since my diagnosis in February. My life now is better, but still odd, and I know I have a lot of work to do to process this diagnosis and what it means to say that I have fibromyalgia. But I do. Almost every day, I have some pain: my hands, my feet, my head. My eyes are so sensitive to light that I have to wear sunglasses most of the time, especially inside under fluorescent lights. I can’t sit or stand for extended periods of time without pain, or even carry grocery bags for very long. But I’m learning about my triggers, and working with – thankfully – doctors who really care, and the pain is manageable and bearable. Sometimes I have vertigo, and I now get one to two migraines a month instead of my one every one to three years.
As a biologist, of course, there’s more to my story than that: I have a burning desire to understand fibro. I have access to medical journals that are harder for the general public to access because I work for an academic institution, and I have been trained in how to read them. (My history of growing up with Lily and learning from that life how to ask questions and take notes during a doctor visit also help.) Fibro is…not very well understood. My rheumatologist described it as a disorder rather than a disease, because the symptoms may wax and wane, but no permanent damage is done. To the best of my abilities right now, the rest of what I have learned is this: in fibro, the body has an inappropriate response to pain. Early evidence suggests that there are chemicals that help transmit pain messages that are elevated in people with fibro relative to the rest of the population. This manifests in pain where none is warranted, and weird feelings as the body insists that it needs to heal itself. Sleep is when some of that healing happens, but that seems to have gone wrong, so fibro patients frequently have poor or disrupted sleep. I’m still fussing over the details, slowly, since I know it’s not healthy to fixate on this (and I’m a PhD, not an MD), but I feel like it’s important to be informed. Hopefully my early understanding is correct, but it might not be; it’s challenging to pick apart medical and scientific reports, especially if you’re emotionally invested in a topic!
So that’s my story – that’s how I arrived at my own current awareness of fibromyalgia. Hopefully it helps you, my dear readers, to be more aware of it, too, or if you are already aware of it, to find some commiseration.