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.
I haven’t been posting here – it’s fallen low on my priority list. Lily’s seizure activity has been a bit higher, my new job is taking a lot of energy, my symptoms are up and down, and things are just…busy and, frankly, stressful and overwhelming enough that it’s hard to step back and be calm or even pleased. I don’t want to just post here when I’m frustrated about where I am in my life, or scared that my own health will prevent me from being able to help with Lily (even just by calling her to check in when my parents are busy).
I feel bad that I’ve had to stay away from posting, because there are so many stories I want to share – especially some nice ones, about how much we laugh and how great things can be, even as we deal with a lot of weird things. But work calls! So back to work I go.
I’ve been very quiet here recently. There are a lot of reasons for that: jury duty, writing assignments at work, looking for new jobs, managing my own symptoms while still getting used to new meds and having the weather be weird, desire not to think too carefully about the kinds of things I post here. You know: life.
I’m not sure, right now, when I’ll have time to post again, but post again I shall! I think I’m close to being ready to talk about how people perceive Lily, right now, as she’s been having a lot of adventures with new supported living staff and trying new activities under our parents’ supervision. And, wow, she’s 30 now. (How did that happen??) And I am now 33. (Again: what happened??) Funny moment: I was on the phone with Lily and my dad, and they were using a speakerphone. Dad teased me that I was getting old, and I sort of sighed over it and conceded that I was old. Lily immediately responded with, “Oh, you’re an old girl!” Definitely mortified me a little, but it made everyone laugh. (My mom heard it from the other room, and later commented that it was quite a logical statement from Lily, since she considers me a girl, not a lady. “Woman” isn’t really in Lily’s vocabulary, somehow.)
The good news is that things aren’t scary, as far as Lily is concerned, right now. I don’t feel stable in my own life, but she seems relatively happy and, from what I’ve been told, hasn’t even had a lot of seizures recently.
And with that said, I need to get back to work and errands and chores. Hopefully I’ll be back online soon.
I had an MRI last weekend, and an abdominal ultrasound this week. I have a work deadline today and a job application deadline that I really hope means they accept stuff today, because I just sent in my package.
Someday soon I hope to post about the fact that Lily is about to turn 30. (!!!!!!!!!!!!!) This is…it’s something. And I am scrambling to look for a job and to deal with my own continuing diagnostic adventures, but I have to do something special amidst that scramble to help mark the fact that this remarkable young woman has defied her doctors’ expectations and lived and blossomed.
So while I scoot around my world, please go read this: “On The Fear Of Being Different: Childhood, Audism and Able-Bodied Privilege”, posted at gradient lair.