Arthritic happenings

So you know I have rheumatoid arthritis,  right? You know I developed it after eating a bad egg sandwich on Boxing Day 2005 in Barcelona, right? I’ve been sort of rediagnosed with Ankylosing Spondylitis now, because a year ago it began to affect my left eye. And you may or may not know that in the last six weeks I started 2 new medications. Methotrexate and Humira.
The methotrexate came first. It’s technically a chemotherapy drug. I take a low dose once a week.  It makes my hair thin and my stomach feel rough and my body weary. It didn’t do much for my pain or inflammation. However it works with the Humira,  which I started last week, and is meant to increase the length of time the Humira works.
I took Humira for the first time last week. I have to inject myself fortnightly.
The day after my first injection was awful. All my bad spots throbbed with pain. But the second day was amazing. My pain was reduced by a third to a half. Then on Friday I took my methotrexate again and it was pretty awful.  My arthritis pain was still much reduced but I spent the weekend battling nausea, exhaustion, and a really itchy scalp. Saturday was a wash. Sunday was half a wash, but by Monday I was mostly okay.
Hopefully when I take my next injection on Tuesday it will be a little easier and I will be able to walk freely and sit on the floor with my kid and start doing yoga again.
There are scary parts too. These drugs suppress my immune system,  because inflammatory conditions like this occur when your body attacks itself so that needs to stop that from happening. Since I live with a small germ factory this is a little scary. But it’s a risk I’ve decided to take because right now that same germ factory has a mom who can’t do very much a lot of the time and that’s not cool.
This is an exciting and scary time. I’m hopeful and anxious in equal parts. But I can walk more easily, and maybe my cute shoes will fit better now that my feet aren’t so swollen all the time.

I said to Hank Williams, how lonely does it get? Hank Williams hasn’t answered me yet.

When my dad died 4.5 years ago he left instructions about how we were to mourn. Specifically, we weren’t supposed to mourn. He wanted a party with beer, music and laughter. He got that party and there was plenty of all three of those things. But I’m still a salty 15 year old at heart. I don’t like being bossed by my dad and I don’t react well to it even when the bossing is coming from beyond the grave.

I mourned actively.

I sent one of those stupid sky lanterns into the air and it blew into a tree. I wore his old Cheap Trick t shirt for weeks. I listened to songs by Johnny Cash and Wille Nelson and I wept (I avoided Patsy Cline, I’m not an idiot). And now, even though my father was neither Catholic nor particularly religious, and even though I am neither of those things either, I light candles for him in elaborate churches and cathedrals.

In Bruges I chose the gaudiest most gilded spot in the entire cathedral (no small task) and I put a Euro in the little box and I prayed to the Virgin Mary. I grew up Lutheran though, so I probably did it wrong. That would have bugged him too, he was a man who liked jobs done right. We’ve been to Venice twice since his death and he gets prayers there too. Give me an ornate church and I will light a candle just to spite my dad.

Not really. I tell myself that’s why I do it, but I also do it to ask for grace. I do it to let him know I love him. To remind myself of him and take a moment surrounded by opulence to think of a man who loved his family and beer and country music and HAM radio.

This May my old roommate and good friend went into the hospital. She is unlikely to leave the hospital. My dad taught us to play Texas Hold ‘Em while smoking a cigarette and drinking a beer in the back room of our old apartment in 2004. Much like I was on the morning of Nov 13 2010 I’m sitting at home this morning waiting for bad news after a message that her condition worsened last night. These last few weeks of waiting and wondering from afar how she’s doing have been unfair and impossible. I feel like I’m going through all 7 stages of grief simultaneously and she’s still there, laying in a hospital bed with machines helping her breathe.

We were in Venice a week ago. While we were there we went to the Church of San Giorgio Maggiore to see the enormous mesh sculptures of Jaume Plensa. A head and a hand that appeared, to me, to be offering a blessing. I put 2 Euros in a box and I lit two candles in front of the Virgin and first I asked her to watch out for my friend, I asked her to keep her safe and surround her in light. And then I lit a candle and prayed to my dad, who is not a saint and as mentioned above was not Catholic. But I prayed to him anyhow. I asked him to help, if he could, if that’s a thing dead parents can do. To sit with her now, and if necessary, to show her the ropes after, in wherever the after is. To give her a cigarette and talk to her about whatever you talk about in that place.

Then I went outside and I gave my kid a hug and as I looked across the lagoon at San Marco I tried not to be too angry at either of them, my dad and my friend, I tried to send glowing loving thoughts to them, particularly to her. I’m trying to do that even now, but I’m listening to Leonard Cohen covers so mostly I’m crying and thinking selfish thoughts.

I’m thinking of how beautiful and talented and funny she is. I’m thinking of the time we sat on some rocks at a little beach in Roger’s Park drinking beer and telling jokes in terrible English accents. I’m thinking of the day she came to my room and handed me a ring she’d made me and then 6 months later demanded it back before handing me a new one telling me the old one was terrible. I’m thinking of sitting on the back porch with her, barbecuing dinner and talking about everything. I’m thinking about her wedding on a tropical beach and how afterwards we all laid on lounge chairs and stared at the huge,shimmering moon. I’m thinking about going to see the Pixies with her and her sour face when they played Here Comes Your Man and how I still made her laugh by jumping up high in the air because I love that song at least 10 times as much as she hates it. And I’m thinking about how she’s still present tense but any second now I may get a message that changes her to past tense and that cannot be right no matter how many benevolent spirits are there to hold her hand. It can’t be right and it won’t ever be right and I hate it.

So right now, right this second, I’m going to think of her at brunch as she was 12 years ago, looking at me across the table over good coffee, fresh orange juice and an exceptional plate of Eggs Benedict. I going to think of her glowing in the sunshine of a beautiful summer day in Chicago and I’m going to think of her joyful and laughing. And I’m going to hold onto that for as long as I can.

Oh yeah!

If you’ve come here from my guest post at The Feminist Library then you might be interested in reading this. It’s the poem Joy and Livernois Road by Marge Piercy that sent me to ye olde card catalogue looking for more. It remains heart breaking and amazing

Updates

1. I have been reading Wolf Hall for the last 500 years (or 2 months) I really like it but I don’t think it will ever end.
2. My leg is basically healed even though it still hurts 60% of the time. No more crutches though, which is 100% excellent.
3. I’m trying my hand at some speculative fiction,  except news from the U.S. keeps making it feel less speculative, which is sad. Writing it it hasn’t been sad though. Writing it has been really fun, so I’ll keep doing it, thanks, I’ll just have to speculate more.
4. The entire run of A Different World is on Netflix right now. This may severely impede my speculation. I loved A Different World as a kid. It was possibly my first real exposure to the idea of university as something more than an abstract and I’m curious to see how that’s held up 20 odd (Ack! ) years down the road.
5. Speaking of 20 odd years, my 20th high school reunion will be held this summer. I can’t go because we already bought tickets back to Michigan for Autumn. I’m not exactly sad to be missing it but the whole thing has definitely left me melancholy.  Not that it’s hard to leave me melancholy,  but this is extra.
6. More soon, with more detail and more cleverness. Scout’s honor.

It’s kind of a big deal

For the first time since breaking my leg I was just able to sit on the floor and build Max a train track setup.  It’s not my best work,  but I did it and it’s more than a basic circle, so I’m calling it a total win.
Speaking of my broken leg, tomorrow I go in for x rays and a check up with my orthopaedic consultant. I should find out how broken my leg still is (hopefully just a very tiny bit) and if I can start carrying Max from place to place again.  Also, I will not forget to ask if all the metal (a pin down the length of my tibia and 4 screws to hold it in place) in my leg is now a permanent feature in my physiology.

Most importantly of all through, I’m hoping they’ll give me copies of my x rays so I can see from start to finish exactly what was happening with my leg.
And even though I refused to post ultrasounds of Max on the grounds that it was weird to put pictures of my insides online I will totally put these up, because legs are different.  They just are.
Especially when they’re bionic.

Lazy Mommy is Lazy

Why, yes, we are watching The Lego Movie again this morning. But there are reasons! Reasons that are not all related to laziness! We’re waiting on a delivery from Ikea and while they are supposed to give you an hour’s notice, that, quite frankly, isn’t enough time for me to walk home from the park right now. So, Lego Movie.

There’s also been jumping and train driving and playing, but at the moment I have parenting limitations. We’ll do something creative this afternoon, promise

Returns

I’ve been neglecting this space.  I’m not even sure why but it’s been stupid of me.  I like writing here. I like the open-ness of it. I’m starting again right now.

So it’s been a sort of tumultuous autumn.  I broke my leg at the end of August and have been slowly healing since. I thought my recovery time would be spent writing and creating like a machine but for some reason I couldn’t get in gear.  I can’t even blame painkillers because they only sent me home with codeine and paracetamol which are  the least enjoyable painkillers of all,

I did however spend my time doing a lot of knitting and watching of Buffy the Vampire Slayer.  I knitted a shawl, a lace scarf, a cardigan, a cowl and a baby hat.  I’m almost done with a second shawl now and hope to start a sweater for Jeremy tonight. So even though I didn’t write a novel while laid up I did rediscover my love of knitting in a big way. Also I learned that I was stupid not to watch Buffy when it was originally on. That show was really good.

So this is a boring entry, I apologise for that, but by the end of the week I’ll be more interesting, promise

#yesallwomen This one in particular

I don’t often talk about these incidents because they seem small and unworthy. Because I know too may women to whom worse has happened.

So I keep these stories close to my chest, too close possibly. I was married for 5 years and had known my husband for 10 when I finally told him about the boy I met on my first day of senior year.  He was new so I helped him find his way to his home room.  I remember feeling so jaunty that day.  I remember the outfit I picked out to wear and how pleased I was that this was my last ever first day at high school. And I remember feeling like I was doing this good deed, helping out this nervous kid.

He followed me around for the rest of the year.  He wrote me ridiculous notes about how he’d witnessed a drug deal and now gang members were going to kill him and he gave me his soccer medal because I was his only friend and he wanted me to have it.  He was intense and frightening.  I gave back the note and the soccer medal, I told him to leave me alone.  He was still aroud,  still on the periphery.  Always.  Later, my guidance counselor, a man I had previously respected, called me into his office to tell me not to be scared of this kid.  I don’t remember exactly how I responded but I remember that I saw a red haze that I didn’t know how to put into words as he spoke to me.  I think I might have said, ‘But I am scared.’ It feels like such a weak response.

The summer after my first year away at college he would show up at my house.  He gave my mother another note for me, another convoluted story.  Something about how he’d fallen off a cliff and had amnesia but someone had told him he’d treated me poorly and he wanted to apologise.

It sounds comical in the retelling, I know that, my friends even made a joke song about him to the tune of The Cat Came Back. But it never felt comical in the moment, certainly not the day he sat on the side of the road across the street of my house for hours.  I spent most of that day on the wide step at the curve of our staircase because it felt like the best place in the house to go unseen. It didn’t feel even a little comical at that moment, and it didn’t feel comical over a decade letter when he sent me a message on MySpace.  Without realising what I was doing I took myself to the wide step at the curve of my staircase in London, half a world away.  As if I still needed to hide from him.  None of it is comical, not really, but that’s how I tell the story, because comedy is easier, apparently.

I didn’t have a name for the other not-horrible-not-as-bad-as-what-happened-to-other-people incident until a few years ago.  I think I called it That Thing That Happened for a long time.  Then I read this about Not Rape and that’s the context I use to describe it now.  That time I didn’t get raped by my ‘friend’ from work at a party.  That near miss when he thought that because I was passed out it meant he had free reign.  The way I didn’t know what was going on at first, the feeling of dread as I slowly figured it out.  I still don’t know exactly how I managed to push myself into a wall and pull my jeans back up and I still hate the way I consider myself lucky that in the end he just tried to jack himself off between my thighs and then fell asleep next to me for the rest of the night.  There was nothing lucky about any of it.  I hate the way I tried to play it off as no big deal at first and I hate the memory of how the realisation hit me on the drive home, sitting in the passenger seat of a friend’s car as my brain slowly put the pieces of the whole thing together.

A few weeks later in the work break room, a girl would ask me if there was any way ‘you could make things cool between you and you-know-who?’ It was making other people uncomfortable, I guess.  She was shocked when I flat-out said no.  Just no.  A word that still, apparently, wasn’t enough.

Two days after I didn’t get raped I cornered him by the vending machines and told him never to come near me again.  I still look back with wonder at 20-year-old Carolyn, at how she found her voice where 18-year-old Carolyn only had a haze.  It still took 20-year-old Carolyn 3 more days before she slept again.  And 37-year-old Carolyn would still rather not talk about other things that were said in the immediate aftermath.  I just don’t want to, they still cut too close.

But I will talk about how just under a year later I found out he did rape another coworker.  The police didn’t take her seriously and many of our ‘friends’ didn’t take her seriously.  She once said he was hot, after all.  If I regret anything in my life it’s not the vodka I drank that night but that I didn’t tell more people about what he didn’t do to me.  That I didn’t just say fuck the consequences and warn more women, put his picture on telephone poles, write his name on all the bathroom walls.  Maybe it wouldn’t have made a difference but I still wish I’d done it because I regret so deeply what I didn’t say and the role it played in what happened to her.

So I’m saying all this now, 17 years down the road, even though they both still feel too small to count.  Because I know they are not too small to count and I know I am not too small to count even though I am sometimes still scared and sometimes it all still hurts.

 

Memory tricks

I’m pretty sure that I remember where I was when I found out.  It’s weird that I’m only pretty sure though, because I have a solid memory for events and big deal moments and even quite a lot of minutiae.  But for whatever reason this moment has blurred and melded into other moments and from there it stretches into a series of anecdotes until it barely relates to the original moment I was trying to remember.

This is what I am almost certain of.  On April 5, 1994 I was babysitting for a family that lived on Lake Huron.  They had a huge house, three children, a Dalmatian and a bird.  They had a private stretch of beach, a large boat and a jet ski.  To my 16 year old mind they were RICH.  I know now, at 36, that they weren’t truly rich.  I know now, at 36 and having seen more of the world, that there is probably no one in Port Huron who is truly rich.  True wealth doesn’t go to Port Huron, why would it?  But in relatively small world I lived in then, they were certainly well to do and it was definitely a plum babysitting assignment.  There were good snacks, full cable and the kids were old enough to keep themselves occupied most of the time.  So I was making use of that full cable, watching Mtv when the announcement came on that Kurt Cobain was dead.

Here’s where things get fuzzy.

I’m pretty sure I called friends.  We weren’t big fans but we knew this was a big deal.  I remember actively knowing it was a big deal, the kind of big deal where you knew that someday, say 20 years down the road, you’d be telling someone where you were when. And then for some reason, my brain insists that this was also the day I got asked out on a date for the first time.  It wasn’t.  I know it wasn’t.

I know that my first date was to Homecoming in October 93.  A boy the year behind me at school asked me.  We went in a group with a friend of his and a girl I’d known since 6^th grade and another couple I can’t clearly picture.  The boy who asked me, we’ll call him X, he was a Republican, something I found weird even then, because I knew that young people were supposed to be liberal in their politics, their prized possessions were not supposed to include a photo of them shaking hands with Ross Perot (technically an independent, but seriously).  They were not supposed to think Engler was a good guy.  Anyhow I knew this kid beyond that he was a republican, sort of, we were both in the marching band, his dad was the pastor at the church that my family got kicked out of (not exactly kicked out, more told we could leave) though he took the job after we’d left, I knew he was taller than me and skinny and had a big smile.  I didn’t like him or not like him, but it was nice to be asked out.

I remember he was running with the cross country team in my neighbourhood the day he asked me out, which was not the day Kurt Cobain died, he ran backwards and asked for my number and I was trying to be cool by being  sarcastic and sort of cocky, which is how I thought cool people acted.  It isn’t how cool people act though, I know that now, I also know that it probably just made me seem more awkward and weird which goes a long way towards explaining why I was 16 and only just getting asked out. I gave him my number and the number of the house where I would be babysitting that night.  So I was sitting on the counter in the big shining kitchen of that house on the lake when he called later and asked me to homecoming.

Just like 6 months later when I was sitting on that same counter talking to my friends about the death of a rock star who I knew to be important even though I couldn’t say exactly why.  I think that’s where the mix up happens in my memories, but now that the mix up has occurred, it mixes more and I need to think about the actual date.  It was not a very good date.

I wore a long burgundy lace dress with matching burgundy choker and earrings and even burgundy platform maryjanes, I was a vision in burgundy.  We had a group dinner  at the Victorian Inn where X worked as a dishwasher.  I had filet mignon even though I could not pronounce it.  He introduced me to the kitchen staff.  It was sweet, I guess.  Later at the actual dance, we regarded each other stiffly, neither of us especially sure what to do with our hands while we danced around the gym.  We didn’t have much to talk about, though we did try.  I spent a lot of time in the bathroom.  I remember feeling like the gulf between our political views was insurmountable, like why were we even trying, what was the point?  Looking back I imagine that if it was awkward (and it was) that most of the blame can be placed squarely at my feet.  I’ll take that burden.  We didn’t hang out afterwards, we were still friendly but there was no chemistry and there was unlikely to ever be any.

Years later via Facebook I would find his profile and his diamante choker wearing profile picture. Yes, dear reader, X was gay and out and happy and living in California.  We sent a few messages back and forth ‘Are you still a republican?’ I asked.  His response was the word no with a smiley face.  We joked about how we both got as far away as we could.  And we lost touch again.  Amicably, both of  us, I hope feeling less awkward than we had that night back in 93 when we stood on my back deck after the dance and tried to figure out if we should kiss each other tonight (we didn’t).

But back to 1994.  April 5^th is also my dad’s birthday.  He would have been 51 in 1994.  I don’t remember how we celebrated that year.  I do remember that 2 years later on April 5^th I came home from college for the weekend and immediately got into a friend’s car and went to see Allen Ginsberg and Patti Smith do a show in Ann Arbor.  My mom was mad at me for coming all the way home only to ditch out on my dad’s birthday.  I remember explaining my reasoning to her in that still cocky and sarcastic way I was holding onto.

‘Listen, Mom,’ I said all sure of myself, ‘Ginsberg is old and he’s done a lot of drugs, he’s not going to be around long, Dad’s got awhile left to go, I need to do this.’ And I ignored her frustration (sorry, Mom) and went to the show.  I know that all sounds callous, but the thing is, I was right.  Ginsberg was old, and apparently pretty unwell, too.  He died exactly one year later on April 5^th, 1997.  He had cancer.  I remember a girl in my creative writing class saying, ‘But I was supposed to have coffee with him!’ When she found out.  I never had coffee with him but at least I saw him read part of Kaddish in person.

13 years later, in November 2010, a few days after my dad died in a hospital in Detroit I sat on the floor of my kitchen in London and read Kaddish silently to myself, an attempt to mourn halfway across the world for a man who had left specific instruction about how he did not want to be mourned.  I probably cried.  I can’t remember for sure.  I cried a lot during those early days following his death, sometimes I’m surprised these 3+ years later to realise that I ever stopped.  And then in December of 2010 on Christmas day I got a message on Facebook.  Did you hear about X?  And saw status updates popping up as people tried to piece together what had happened.  He’d had a heart attack in his sleep, aged 32 and his sister found him on Christmas morning.  I think about her still, I don’t know her but whenever I think about him and how he died I want to hug his sister. I want to tell her how sorry I am and I want to tell her about that lousy date in the Autumn of 1993 and I hope it would make her laugh and give her something unexpected about her brother. Because I like it, now, when people tell me an unexpected story about my dad, I like it when I learn something new and funny about him.

I don’t have anything unexpected or special to say about the 20^th anniversary of Kurt Cobain’s death.  You probably don’t care that some kids at my school put up a banner in his honor, but that they misspelled his name Kirt, and that we made a sarcastic joke about it in the school paper.  That’s barely even a full anecdote, it’s just an eye roll.  I only have this muddle of memories that the mention of that day brings up and the general sadness you feel when you think about someone who died sooner than they should have

Things I write in other places, part whatever

So I recently submitted this to be part of the narrative map at the Great Lakes Review website.  And it got accepted which is awesome, though full disclosure an old friend from Wayne State University is their Michigan editor.

Anyhow, connections from the 90’s aside, people seem to like it, which is really pretty awesome and kind of surprising.  Mostly awesome, though.