My Life on Lupus: Dreaming of Mice

Boy, how do I describe a set of days with lupus? Despite the fact that there are a lot of bloggers out there talking about a lot of chronic conditions, I have a hard time focusing on a storyline or a metaphor. Not even the wolf or Christine Miserandino’s spoon analogy does it for me. Maybe it’s because I’m a hardened loner and would rather come up with my own metaphors, thank you very much. (Although the spoons are really as good as anything I’ve found to explain the ups and downs of trying to manage an illness like lupus.) Maybe on bad days I’d rather be escaping my fatigue and aches and gloomy moods than trying to craft them into an overriding conceit that can help me weather things out. When I feel crappy, knowing why I feel crappy doesn’t help much. I want away from all the dreariness. I want constant entertainment and mental stimulation to keep my mind off things. I don’t want to feel like I’m stuck indefinitely at home, even when I am.

So ultimately what happens is, I sense my lupus in little bits and fragments, lonely and discontinuous from my functioning life. For example, starting Friday of last week, for about 36 hours, I was sleeping off some sort of bug I caught at my therapist’s office. (No, really, I started feeling dizzy and strange as I sat in the chair with my therapist. I’m guessing the germs found their way there because she and her group charge an exorbitant late cancellation fee, so any sick people show up rather than pay. I myself was charged said fee because the week before, I was also sick. Ironically, as the receptionist is telling me I owe them a huge sum of money for not bringing my germs to their office, she’s also asking me if I’ve been to West Africa recently. I wonder if I’d said yes, they would have charged me a late cancellation fee.)

Sleeping for two days is actually kind of nice, because you can just drift away and not worry about the usual concerns, the laundry, the appointments, the house falling to pieces around you. On Sunday, though, you’re starting to move around again, going back to normal life. And like a diver returning to the surface, who has to move through layers of water pressure to get acclimated, I move through waves of anxiety and crabbiness as I realize everything I have to deal with is still there waiting, even though I never quite have enough physical or mental energy to engage with it. I guess that would be a difference between lupus and deep-sea diving: when you go back to Life on the Surface from the midnight zone, you’re never 100% ready for the light.

So Sunday was a halfway-crappy day. There was sunshine I missed. There was work I had to stay up late to do. Then Monday rolled around, with 70-degree temperatures–real collegiate weather, and likely the last of the warm stuff for quite a while. Even though Sunday night’s sleep wasn’t long, I’d banked a lot of shuteye already, and I felt amazing. I had errands to run, but I decided, screw it, I feel like exploring. Recently, I’ve been looking at a lot of old pictures online, so I thought, why not try to find some old postcards? I hit the local antique stores and thrift shops. Didn’t find any postcards, but I did collect a whole bunch of lovely little knickknacks: a set of Tupperware cups, in neon colors, that looked like the kind I used to drink from when I was a kid; a watch that runs on old-fashioned winding; two Choose-Your-Own-Adventure books from the 1980s; an old British version of Monopoly Jr. I went to four stores and spent about $10 total. Felt awesome. Picked up my six-year-old from school, where he’d just had his science-club class and was full of stories. Life seemed tremendous. I couldn’t see how I’d ever be blue again.

Then today arrives. The temperature drops. I don’t get any sleep last night, either, so I have to nap so I can function. Wake up in a sludgy fog. Can’t get going. Don’t like being cold and stiff. Have to go to the drug store and explain for the umpteenth time how to fill one of my prescriptions, which comes in a nonstandard dose but which I’ve taken since 1998 (and have been filling at this same pharmacy since 2003). I get things done, but not as much as I want. (It’s never as much as I want, except for yesterday, when the sun was shining and I felt like I had infinite time on my hands.) Feel depressed. I know it’s because of the winter coming on, and I can’t really fight that.

Either during the night or during the morning nap, I have a terrible mouse dream. I have these off and on, even when the little bastards aren’t sneaking into the house to get warm and shooting across our floors. In the dream, a mouse pops into our well-lit living room–the first mouse I’ve seen in several days. I tell my husband, I try to show him. Then I realize there’s a hole in the wall that the mouse is not only escaping through, but building as I watch. It exits out another hole, one that I haven’t seen. Then, a huge swarm of mice starts pouring out of the second hole, more than I’ve ever seen in our house, more than I’ve seen anywhere. I’m sick to my stomach. I can’t even look at them. I’m yelling for my husband to do something, but I’ve willed myself not to see anything. I can’t help. I can’t do anything besides squirm.

Honestly, I don’t know what the mouse dreams mean. This latest dream was unusual, in that my husband was there with me. Most of the time, I have to go up into a room on a higher floor, in our decrepit house (sometimes it’s a rental), and I know the mice will be in there, everywhere, and I’ll barely be able to walk. I don’t know if this is some sort of subconscious commentary on my physical state, my chronic illness, my overall lunacy, or none of the above. I doubt if I can use mice in a metaphor for lupus. Seems important, but the whole mouse thing disgusts me so much I refuse to consider considering it.

Today, in the mail, I got a light therapy box, something that my psychiatrist (who works in the same office as my therapist) has been pushing me to get for a while. We’ll see if I can stave off the gloominess this winter. Otherwise, it’s going to be another long one.

God Bless Sweet Haven, and Goodbye Robin Williams [UPDATED]

[UPDATE: This is important enough to add to the top of the page.  If you need help, please, please talk to somebody.  Try contacting the National Suicide Prevention Lifeline.  According to’s David Wong, it’s been extremely helpful, and you can trust him because he’s a comedian.  No, really.  Wong says if he had to estimate how many comedians he knows who suffer from mental problems, he’d say “approximately ‘all of them.’ “]

I could start out this post with some little shard of dark humor, the kind that covers up despair with an attempt at detached wit, like, how fucked up must our country be when one of our greatest comedians commits suicide?

But I like the directness of Eric Idle’s recent tweet, so I’m going to steal it:

I am sick with grief.


As a child, one of my favorite movies was the live-action “Popeye.”  Yes, the one that Robert Altman directed. The one that made it into a book called Fiasco: A History of Hollywood’s Iconic Flops.  The one on Rotten Tomatoes that the audience hated almost 20% more than the critics, a phenomenon I’m not sure I’ve ever witnessed in the time I’ve known about the web site.  Yes, I can remember what the movie was like, and yes, it was very, very cheesy.  I haven’t watched it in quite a while, but I’m 100% positive if I caught “Popeye” today I’d be cringing at the weird, ramshackle sets, the extreme overacting, the goofy dance numbers, and all the rest.   I’m sure I’d be cringing most of all because I’d surely be aware of that queasy double-consciousness we get when re-discovering ourselves at certain ages, or looking at something we used to love.

Yeah, I loved the movie “Popeye.”  For a while, it must have aired three times a day on HBO, and I watched every chance I could get.  My parents loved “Popeye,” too.  To the point where we’d quote lines back and forth to each other.  We sang the songs.  We memorized runs of dialogue.  For some reason, we latched onto the bizarre setting, a rotting little harbor village called Sweethaven.  When Popeye first rows into Sweethaven the morning after a terrible storm, the self-satisfied, ratty bourgeois dwellers are already singing their town “anthem”:

Sweet Sweethaven

God must love us

We the people

Love Sweethaven

And so on and so forth.  Okay, I admit the words are kind of insipid.  But the soaring absurdity of the whole thing comes out much more if you hear it in context.  Some choice lines I didn’t even catch until I googled them just now: “Swept people from the sea / Safe from democracy”; “God must have landed here / Why else would he strand us here?”  My mom and dad, both small-town folk, ate up the humor and then some.  Ever after that day we first saw “Popeye,” even after my parents divorced, whenever we rolled in to some decrepit little burg, one of us, usually my mother, would always sing in the quietest of voices, “Ah, Sweethaven…”

If you can handle the cartoony cheese and rubbery surrealism, you really ought to take a look at that YouTube link above.  Or look at it one more time.  Those shots of the man rowing to shore over the bluer-than-blue Mediterranean represent the first few minutes of Robin Williams’s career as a film actor.


To be honest, the reason why I’m sharing all these childhood memories is because I don’t have much of a coherent response to the death of Robin Williams.  I sort of feel like I’ve lost a parent.  I grew up watching Mork and Mindy.  I was only too happy when “Popeye” came out.  At the time, no one told me it was one of Hollywood’s greatest flops.  I loved the movie, first and foremost, because Robin Williams was in it, and he, as far as I was concerned, was the funniest man alive.

I know his shtick grew thin after about 20 years.  Maybe looking back, it all looks pretty stale.  Seriously, though, millennials, Robin Williams hit the airwaves in pre-Simpsons, pre-Seinfeld, pre-Colbert, hell, even pre-Monty-Python-Gets-Famous-on-PBS America.  You wanted something on TV you were sure would be funny?  And not just polite-titter funny, but edgy funny?  Unpredictable funny?  New funny?  Robin Williams was pretty much it.

Also, all that rowing and water imagery in “Popeye” reminds me (now) of poet Anne Sexton and her final book, The Awful Rowing Toward God.  Not necessarily because of the scene where Popeye arrives in Sweethaven.  I’m thinking of the movie’s grand finale here, when Bluto steals Swee’pea and starts a madcap chase out into the middle of the ocean where Popeye’s father’s treasure is supposed to be buried.  (Yeah, I know I’m spoiling away here.  It’s a 34-year-old movie.  Shut up.)  Of course, Popeye comes through in the end, Bluto swims away beaten, and everyone gaily sings the traditional “Popeye the Sailor Man” song.  Happy ending, right?  Except for the fact that all of their seagoing vessels–and I mean all of them–were destroyed in the fight to get to this deserted rock in the middle of nowhere.  As a kid, that always bothered me.  What are all the people supposed to do now?  Their spinach reserves aren’t going to stretch for more than a day or so.  Not with two-dozen castaways clinging to a couple of rocks, with nothing but ocean as far as the eye can see.

If you thought I was reaching for an allegory for depression here, you’re right.  Depression isn’t a little problem, not in the slightest.  Depression is a ghastly brain disease.  Bipolarism, which Robin Williams had according to the Twitter buzz, is an even uglier brain disease and results in even more self-destructive behavior and suicide.  People with bipolarism at times have the energy to push and push and push themselves out into nothingness.  They climb Mount Everest.  They row toward God.  They celebrate for a little while once they arrive at their destination. What they don’t realize is that they used up all their resources on the journey.  When they try to turn back, they realize they’re stuck.  No more energy or motivation or stamina.  The situation only gets worse from there.

Can’t say that this is what Williams went through at the end of his life.  I know I’ve had this experience, though.  Others, I believe, have fought through these crises as well.  Linda Gray Sexton, daughter of Anne Sexton, describes her mother’s struggles with bipolar disorder in a phenomenal memoir, Searching for Mercy Streetand then writes of her own horrifying ordeal in Half in Love: Surviving the Legacy of Suicide.  If you’ve never read either of these books, you should.  Be warned, however: they are both harrowing.  For my money, Half in Love is the far more gut-wrenching of the two, even though it documents Linda Sexton’s recovery.  Yes, depression and bipolar disorder are such awful conditions that the success stories, the stories of survival, can be the most traumatic.


I don’t know that I can say anything more about Robin Williams.  There’s really too much to say and not enough will to say it.  I want to wax poetical, express my hope that Williams has reached his haven, and that the sweetness is as satisfying to him as it is to people who’ve never had to deal with mental illness.  But that sentiment is pretty much D-grade schlock.  I hope he’s at peace.  And I hope we learn how best to remember him.