Possible end to posting hiatus; possibly not

Funny how life gets busy, huh?

I’ve been posting a lot more on the SibNet group on Facebook, since I’m on Facebook a lot for work and for fun anyways, and sometimes it’s nice to use my real name. I do want to start posting here again, though, because a LOT has been going on in the sibling life: new medications, new devices, new staff, new family relationships, and some plans in the works for good things I don’t think any of us expected to see happen.

Of course, now that I’m contemplating posting again, I am experiencing a temporary internet outage at home and so…we’ll see how it all goes!

Advertisements

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. πŸ˜‰ 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. πŸ˜‰

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. πŸ˜‰


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. πŸ™‚ 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.


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. πŸ™‚

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.


Why they call them trigger warnings

I just read this amazing personal essay on The Toast, which I enjoy a lot, mostly for the stuff that’s silly.

This wasn’t.

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).