My sister is disabled and I feel I owe my parents two lives in one

I wrote this a few weeks ago. I was just triggered into wanting to post it because I just received a treat I bought for myself – the full series “The West Wing” on DVD. I loooooooved this show when it was first on, and it makes me feel much better to know there are other people who share my liberal political agenda. ;-) It’s bolstering, as I struggle to live up to my own ideals while teaching. (And it just helps the hours pass as I prep lectures and deal with grading.) Anyways! I have just gotten to the part of the first season in which the president’s health becomes and issue – and of course, his health issue is that he has multiple sclerosis, like my mom.

What I wouldn’t give to know, really know, that I’ve made her happy and proud and that she knows I love her and fight in part because I know how damned amazing she is despite her illness and what she’s been through.

*

I’m locked in my own head pretty deeply right now. It isn’t inaccurate to wonder whether I’m in a depressed phase – not sad, depressed, where I read novels so I can feel emotions that aren’t anger, when I sleep all day and toss and turn all night, when I get the closest I get to bingeing and purging. (Weird that I can be thankful to the fibromyalgia and the now medically-soothed urge my body has had to vomit every day for weeks and months at a time. Doesn’t stop the bingeing.)

I have had many of my metaphorical nerves shocked by the media I consume, on top of whatever else I need to be discussing with a therapist I do not currently have. (Today, let’s skip the fact that I am not sure I can afford the copays to see all of the physicians I clearly need to see.) I’ve been watching Frontline, American Experience, The Daily Show and The Colbert Report. I’ve been reading John Scalzi’s Whatever, Geek Feminism, friend-recommended articles from Mother Jones, academic papers on gendering of roles in universities…and Autostraddle.

It’s taken me until this third paragraph to get to the thing I want to say, because it hurts so much to focus on it. I’m making you read that – not editing it away – to try to drag you into this place I occupy, too. Look: a friend of mine lost her mother a few years ago, too soon and after a protracted illness, and grief moved into her life. Reading <a href=+http://www.autostraddle.com/before-you-know-it-somethings-over-241440/"Before you know it something's over", about Riese’s loss of her father and the grief that moved into her life, for me, tonight? was partly something I chose to do to continue to understand that grief. (It’s also probably obvious that it fits into the larger context of my headspace right now.) What grabbed me from Riese’s essay was her talking about what she felt when she decided, as she put it, to live:

But death is not, I realize, a win-win. I have all this time, you see, and I have to use it, I have a legacy to uphold, I have to pass on his genius genes to my children. At my age he had only ten more years to live, I owe him at least double that amount.

(You should read the essay – it’s beautiful and painful and so much of what people struggling with death of a loved one want those of us not grieving to know.) It grabbed me in a way that I resented, because I didn’t mean to be dwelling in my own misery: it made me want to scream or cry or otherwise have an outburst, to shout that it’s no fair that I’m in the place I am in life, feeling unable to live up to what I feel I owe my parents: the best life, full of achievement and love and family.

Now, I know this is partly an idea emerging from my child-mind, and I know it’s worse right now because I’ve had some disappointing dating experiences, and I was recently participating in a conversation with other siblings about having our own kids. But it’s there: I feel, now, like if I fail to be amazing, I’m somehow letting down the whole family. I have to do things Lily can’t do.

I frequently have existential crises. Thanks to my current medication regime, I haven’t had a panic attack in a long time; writing this has brought me to the edge, and the flush of adrenaline has started. I’ve long been horrified and scared of ceasing to exist – much as I am fascinated by the morbid, I am terrified of not being, any more. (With the continual pain from the fibro, though, I am starting to understand the lines from childhood fairy tales, about elders being tired and ready to rest. Yup, need a therapist.) Here’s what I hate: I am the last member of my family, in a sense, and I know how proud my parents are of me, of this child they made together. That I have no children of my own ends that legacy.

Perhaps this is one reason that I pour so much into teaching – leaving a positive legacy, passing on the lessons and love from my parents.

It’s hard enough to battle my own desires for kids: I’ve wanted to be a mom for a long time, emotionally. Physically I’m at a moment of hormones such that I see the commercials for infant Tylenol and fight back tears. I keep wanting to play with my friends’ babies, but also sometimes am so filled with jealousy that I can’t be around them. (I’ve talked about this before; I’m sure I’ll do it again.)

It’s also weird, as a scientist, to think about this feeling of owing children to my parents. I study evolution, which is all about offspring that bear their own offspring, and it’s not especially comforting to think of my childlessness being a tiny version of an evolutionary dead end. It’s also remarkably selfish to think that if I don’t have kids, the world loses out somehow! Add in to that the genetic uncertainty of any conception, and the knowledge that we don’t understand Lily’s disabilities, at all (or, hell, my own, or our mother’s multiple sclerosis), and risking having kids is that much more dramatic. But it’s there: I feel like I owe it to my family to have kids, aside from my own very strong, very clear desires.

You can see why dating is somewhat complicated. ;-)

By so very many standards, society views me as a success. I have a PhD. I am a professor, and although new to the job, have (by their own words) had a positive impact on my students. My research papers have been cited pretty often, all things considered, and I live on my own and sometimes knit interesting stuff and cook delicious food for loved ones. How much of that is me, as I would be without my sister’s influence? How much have I worked to earn awards and to stand out and be amazing because of what I felt I owed my family, for the things my sister can’t do?

*

That’s how far I got. Here’s the list of people I feel like I owe:

- my mom
– my dad
– my parents, together
– my sister
– my students
– my “chosen” family, the sisters I made in college
– my country (which my liberal dictates say needs me)
– the world
– the future (this overlaps with my students)
– my previous self, before my diagnosis
– the people who have believed in me and paid me and loved me

Here’s the list of people I am sure my loved ones would tell me I owe:
– nobody

Okay, MAYBE, maybe, they’d agree with me that, having made the choice to take on activism and having signed a contract to teach, that I owe some effort to my allies and students. But they’d phrase it another way that emphasizes my choice and my duty, rather than “owing” things.

I think many sibs might understand how I’m feeling, along with anyone else who has lost a loved one too soon, or had a loved one who has been a hero. Maybe it’s just “normal” grief for the life we might have had, which some of us experience early, some late, and some, perhaps, never. I wonder if a lot of us have trouble connecting with others (and by that I mean I wonder if this is MY trouble) because we feel like this is a burden we bear, this owing the world for the disappointments and sorrows it feels, and like the burden is for us alone. Maybe it’s because I am the only other child? I don’t know.

All I know is that I feel like I owe the world more than I have given yet, and every day I push myself to try.


Why “Star Trek” people are the best

You may have read my previous entries about how my sister and I (and our folks) are nerds. (Missed it? Here are the focused entries: Part 1, Part 2, Part 3)

Given that, you know I HAD to click on a link about Sir Patrick Stewart being awesome. He helped to surprise Dawn Garrigus, who has a serious degenerative disease, at DragonCon, with a personal meet-and-greet. Dawn has a problem with her mitochondria, which are nicknamed the powerhouses of the cell – as a biologist, my heart sinks reading just the name of the condition. I am so glad she got this chance, and the pictures make it look like the rest of her family join her in being huge Trek fans, like my family. My heart goes out to her, of course, but also to her sibs – of course.

…and yeah, it makes me wonder if I could ever ask the actor my sister only knows as Captain Picard to record a message for her, as “Data” and “Deanna” and “Wesley” all did. My dad now sometimes plays that recording for her (have I mentioned this? if I haven’t, oops! if I have, I’m doing it again!) on the phone. Through a creative use of speakerphones, I was part of one of these moments – I could *hear* that Lily was suddenly sitting totally still. When the message was over, she was just so happy. “Deanna called me on the telephone!” Thanks to the digital transfer we made of that file, we can make this happen again and again.

There are so many people who have been involved in the making of the Star Trek universe, and so many more who are fans in some way, that I know we can’t all be superb humans who never do anything weird or hurtful…but I think we do a great job trying to be the best we can be, among us.

Edited to add: This isn’t meant to be a passive-aggressive way of expressing that someone should pass this info along to anyone, for what it’s worth; I’m not actually ready to ask any other actors for help in crafting something for my sister. And, given that I already have done so? I can do it on my own. (If I were to make a passive-agressive – or direct – appeal to communicate anything? It would be just a “thank you.”)

You might take from this, however, that Make-a-Wish could be a charity to which you would donate…or not to tease a Trekkie in your life as much as you might otherwise. ;-)


My sister is awesome

Something I wrote awhile back:
I just started my new job, in a new place. Most of my stuff is unpacked. Most of my stuff is still a total mess. This first week of teaching – because I’m teaching now – was exhausting. I pushed way too hard. But I learned a lot and am taking some time to recover and plan.

In the middle of all of what I’m going through, my sister continues to amuse and delight me.

The latest story that I wish I’d seen: Lily’s staffing still has some gaps, so they’re interviewing new people. Lily apparently couldn’t remember the name of the person they interviewed this week, and referred to the woman as “Bob” when talking to our mom or to the staffer who was on shift.

This made me laugh a lot, but it also pointed to an interesting thing: my sister may have realized that she didn’t have some knowledge, and filled it in somewhat arbitrarily in order to just get on with her life. She’s forgotten names before, but normally picks names of other people in her life. This is the first time I can remember her making up a name entirely. (I also have no idea where she got Bob; I don’t know that any of us knows people named Bob that we’d share with her!)

* * *
…and more recently:

Mom and I sometimes play Letterpress – sort of a single-word Boggle. Lily was listening in to our “trash talking” and conversation about what words to play while having a speakerphone conversation tonight. Mom had a first turn to take in a new game, and told Lily she could play either “zit” or “goat” (both are inside joke words that we play in the first two turns of the game, if possible). Mom played “goat,” I played “zits.”

Then Mom wanted to use another “z” on the board, and asked Lily for words that start with “z” – Lily correctly suggested “zebra.” This was no good, as there was no “r” on the board. Mom asked Lili, mostly in jest, for another word. (We haven’t really taught her another, besides zebra, but you know, you have to ask sometimes.) Lily clearly was busy thinking for a minute, and then suggested, “horse.”

Seems we have a few more things to teach her about phonics! But it was funny. :-) And it makes me laugh at the memory of my doomed Scrabble game with Mom some years ago, home from school on vacation, and we were trying to keep Lily occupied by playing catch with beanbags. (Lily had the habit of snatching Scrabble tiles.) At one point, Lily got exuberant – not sure if she was bored, since I obviously wasn’t paying attention – and launched a beanbag that slid right across the middle of the board, and wiping all of our words away.


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.

*

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.


A blog I just started following: “Say Hello, Yellow”

I think a lot of us sibs grow up feeling like we have to do everything on our own, because of the lack of independence so many of our sibs have had, and how often we get drawn into parent-type roles. So I don’t always use SibNet, as I’ve said, although I’m trying to re-engage, and I haven’t historically followed a lot of sibling blogs.

Things can change!

I just wanted to share this entry from a blog I just started following, called Say Hello, Yellow. It’s written by both a sister and a mom. How I know these people are my kind of people? They cook together!

Check out this recipe for banana oat cookies.

I may have to send this recipe to Lily’s apartment. She loves cookies, and this is a “safe” recipe for those of us whose sisters like to eat the unbaked cookie dough. ;-)


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.


(Mis)adventures in pain

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.


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