Friday, September 16, 2016

Love

Last weekend I went to Target with the kids, which is nothing to write home about, let alone worthy of breaking a month-long blog silence. Target-run, the meaning of which has come to be mundane, safe in its very basic-ness. Except it wasn't. Kind of. I don't know. You tell me.
I was in a long checkout line when the man in front of me turned around and abruptly asked me where I got my sweatshirt. Um, Modcloth? I said, a little surprised that he was in the market for a skateboarding Snoopy sweatshirt. So is that like a gay thing? he asked. Is that a gay rainbow? His tone was off. Edged. Sneeringly flat. I could sense Zoey listening next to me, Ozzy not sure what was going on. Yes, I said, it's a gay pride rainbow. I made eye contact with him as I said it and did not smile. He turned back around.

I am not gay. And sadly there was a sense of safety knowing that as I stood there in that line with that man who obviously did not like gay people. At any point I could have said, I am not gay. A get-out-of-jail-free card for homophobia. I am not gay. The knowledge of which almost made me feel worse because what if I was? Exactly how much did that man hate me? What would he say or do in front of my children?

The kids were uncharacteristically silent, not asking for gum or those stupid little plastic toys at the checkout. At one point the man turned around again and with the same flat voice asked Ozzy how old he was. Five, I answered for Ozzy. The man did not look at me. I wondered if he would follow us to our car. I am not gay, I thought, but I love and support my friends and family that are, so it actually doesn't matter to this man, to me.

The man was buying a coffee maker that was supposed to be on markdown but came up at regular price, so he had to wait for a manager to adjust the price. Rather than wait at customer service, he stood right there at the register closely staring at us while I was rung up. He was still waiting as we left.

In the car Zoey asked me what happened. I told her the truth. We had a good conversation about how some people don't like other people because of their skin color, religion or sexual orientation, and how it's important to stand up for human rights. That guy seemed weird, she said, and it was true-there was nothing he said explicitly that was threatening, but we felt it. So we also talked about trusting your instinct, how it's the most important self-defense tool we have. Something was wrong with that man.

Here it is almost a week later and I can't shake the feeling. I am not gay, but that fact is inconsequential when there are people who hate me just for wearing a rainbow Snoopy sweatshirt at Target on a Sunday with my kids.

Wednesday, August 24, 2016

5 and K

Oh Time, you relentless son of a bitch.
Zoey's last year in elementary school. Ozzy's first. The only time they will overlap in school. A year of me holding back tears while I draw on lunch napkins, cars and skateboards, wondering when Zoey will want me to stop. I have always been an emotional fish, but this--this is some Cat's in the Cradle next level shit.

xo,
S


Friday, July 22, 2016

A Wind Along the Northern Coast of Africa

So many people have been asking me where I am, that is if "so many people" means "no many people," because if a blogger fell in the forest, would it make a sound? 
No. It wouldn't. But I will tell you this: I haven't really been anywhere. Just, like a lot of you, laying low, feeling like maybe I just want to put one gentle finger up against the lips of the world and say sshhhhh, let's all be quiet now. No one say anything, not one thing more, let's all just sit here quietly for a second to calm down.

It was a Volkswagen Scirocco that brought me back. Or the lack of one. A random thought that popped in my head the other day, when's the last time I saw a Scirocco driving down the street? How strange it is how slowly things change until one day you realize it's been ten years since you saw a Scirocco, a car that I once coveted to the point of tasting the smell of the seats, two-toned leather, like the Scirocco that my friend's older sister drove. Oh, how I wanted that car and her hair, like Proust's madeline, and I thought, I bet the people who live inside my laptop might like to hear about that. 

So here we are. Ozzy has an imaginary friend he calls The Ghost Kid sometimes, other times Mr. Nobody, although around Zoey's friends he calls him Flabeeo. The Ghost Kid is black, not African American, but actually black like a shadow. He hangs out in Ozzy's room and scares him, and I can't help but wonder--imaginary? 

Sshhhhh. Let's whisper-talk. The world is a blown-out eggshell. This weekend we are going sailing as a family, will listen to the fog horns and sleep on the boat. The boat's name is Adagio. Marked by a slowing of the tempo.

xo,
S



Wednesday, June 15, 2016

The Sabrina Jumpsuit

I am being followed. You, too? I mean, it looks so easy. Like maybe it's the most universally flattering thing in the world if only you never had to go pee in a public bathroom and figure out how not to let the top of it touch the floor. 
I am being followed. You, too? On the tv and on my Facebook feed, so many posts about guns and hate, homophobia, Islam, fear-mongering Trump. Like maybe it's the most universal thing in the world if you never had to leave your house. Did I just segue from a targeted Facebook ad to a massacre? Yes, yes I did. Because this is what it has become, tragedy doggedly following us wherever we go. Video of a kitten giving itself a bath! Carpool Karaoke and a petition to regulate semi-automatic assault rifles!

On Sunday I woke up and heard the news. You, too? Then we took the kids to the park where there were a dozen 7 year olds playing war with Nerf guns. "I shot you! You're dead! No, you're dead! You're dead! You're dead!" I tried very hard not to be judge-y at the parents who thought this was ok on any day let alone that day, but a little judge-y slipped out like a fart, and even Bryan who isn't as knee-jerk pc as I am admitted it seemed wrong for kids to play with guns like that, even if the guns were semi-automatic assault Nerf.

(Later we were driving somewhere when we saw a guy slam on his brakes and get out of his truck to punch another man through the open window of his car. For days now I have been checking my local newspaper to see if this made the news, but it didn't. Cold-cocking and road rage ho-hum.)

I remember after 9/11 how we were all unified in our grief. The world may have been ending, but at least we were in it together, mourning not only the dead but the loss of a time before we knew. I felt like maybe we were all kinder then, that there was a shared sense of the need to walk past each other gently. I don't feel that anymore. We are not in this together. We know, each of us certain and right.

The most visceral thing I have heard about Orlando is about the constant ringing of cell phones on the bodies of the dead as the first responders entered the club. Details like this. I have signed all the petitions. Called my senator. Talked to my kids. Is that the answer? 

There is a question, right? Do we all agree that there is a question?

This is the beginning of a slow healing, a slippery slope into merciful forgetting. I think of the children of Sandy Hook and feel sick. Watch a video of a kitten giving itself a bath and feel better. You, too? There are more good things than bad, I tell myself, the world a paradox of terrible beauty. I click on the link of The Sabrina Jumpsuit knowing that it will now follow me forever and ever until I do something about it. Buy it. Anything.

Love,
S

Thursday, June 9, 2016

Going to California (speaking of night-night songs)

Someone told me there's a girl out there, with love in her eyes and flour, in her hair...
Flour, flower, potato, potahto. Here we are on Famous Californians day at school. Zoey is someone whom I have never heard of, a Newbery Award winning children's book author with white hair and oversized glasses. I want to squeeze those Sally Jessy Raphaels right off her face, she is so delicious as an old lady. 

It is June, and there are Famous California days and field trips, end of year parties, preschool graduation, kindergarten orientation. I have to make an appointment with the endocrinologist to have my thyroid checked. Of course with a new job I have no accrued PTO but do have a Google doc with the summer dotted with different camps. Drop off at 9am on Monday here, pick up at 3 there. None of this is particular to me, all of us moms standing around saying how cute they all are, John Muir with a stick-on beard, Steve Jobs recognizable for his black turtleneck, a boy dressed as Nancy Pelosi if Nancy Pelosi were blonde and short and a ten year old boy in a woman's blazer.

When my mom was very sick I remember fumbling with Ozzy's stroller in her room at Hospice, pinching my fingertip so hard that I screamed. The week that she died I had a nasty blood blister right at the bed of my nail, and then later, as we planned her service, a ridged, white mark across the nail. I remember watching it grow out, feeling sad as it got to the edge, like somehow that white mark kept me connected to when my mom was still alive. 

My hair is almost at a bob now, time carbon-dated by its growth. Newscaster hair, I say, thinking how strange it is that people at my new job might think this is just my style when really I am a messy top knot kind of woman, someone who wears her sunglasses inside because they are prescription, jeans, always jeans, hoop earrings, a gold bangle bracelet, not famous, but a Californian. It's the end of the school year, it always does this to me, though if I am being honest so does the beginning of the school year, March, October, July. My daughter with white flour hair on a mountain of dreams.Telling myself it's not as hard, hard, hard as it seems.

la la la la...
S

Monday, May 30, 2016

5

It's the only time you slow down long enough for me to hold you really, when you go to bed and we do a night--night song, how I tickle your back so buttery it slices me into pieces. (For the longest time it was Powder Blue every night. You knew the words by heart and would sing with me as we lay together face to face, go to sleep my baby, sleep now little you...)

You are 5 now, a number that signifies, among other things, that I will no longer wipe your butt. This is the deal we had, and you are solemn about deals, how you shrug your shoulders and cock your head as if to say, it is done, yes? Yes. I hope I remember this, how you like to do pretend homework each night, pretend only because no one has assigned it but you. Kite does not start with C, you say, with that same shrug, because it, too is done, so you do not circle kite with your crayon.

Every day you play with ok. Is this? What about this? And because I am tired and you are always moving the answer is mostly no. No, that is not ok, how I absentmindedly say no and then catch myself sometimes. I mean yes, yes of course you can [insert totally acceptable something here]. But you cannot climb to the top of the batting cage and we cannot go to the zoo and you cannot eat a fourth cookie while running with a sharp colored pencil and a glass full of watered down grape juice. I watch my words from a long way off, from 10 years off, 15 maybe, and I cannot breathe because you fill everything, spill over, and so I tell the world to slow down. Stop. Breathe. We are just going to bed and we just have this night, what song do you want? Lately it has been Beautiful Boy, the Ben Harper version. Still, we lay face to face and sing it togetherClose your eyes, have no fear, the monster's gone, he's on the run and your daddy's here. Only I say mommy, and when you look at me funny because that is not how it goes I shrug my shoulders as if to say it is done, yes? You're my beautiful beautiful beautiful beautiful boy...

Happy birthday, sweet Oz. My wish for you is that for the rest of your life, whenever you need it, you can pull up this memory of me singing this song to you and tickling your back, our faces just inches away.

Love,
Mommy

Wednesday, May 4, 2016

Fun Fact

I have a Geographic Tongue. Which I didn't know about until quite recently when my dentist mentioned it offhandedly as she was cleaning my teeth. "Has anyone ever told you that you have a Geographic Tongue?" Which made me feel slutty with the light shining down into my mouth like that, my tongue apparently one that gets around.

(I guess I always thought the patches on my tongue were an indication of an extremely rare oral cancer that was going to kill me, one of those things that I keep silent about because it is all eventual anyway, how I am ashamed of my own embarrassing mortality. As it turns out, my tongue is not going to kill me. It is just a harmless condition of unknown origin that affects 1% to 3% of the population, patches on my tongue that change shape like a map of political unrest.)

At my new job there are screens at the elevator banks with a running slideshow of employees: a photo, title, plus a fun fact. Wendy in Marketing bartends on the weekends! Shauna likes to hang out with her dogs. Deborah is a karaoke nut. Mike in IT has died twice!

I very much want to hang out with Mike.

Thinking of a fun fact about yourself is kind of like when it's your birthday and people ask you what you want. I don't know. A gift certificate for a massage? I prefer sweet over salty. I love me some Real Housewives. I have met Sting. Once I swallowed a weeble wobble whole. What is a fun fact about myself? The perfect balance between telling and benign, something that says now this coworker is a real hoot, but not so interesting as to suck the energy out of a room. Once I thought I had MS for 15 years but they said it was all in my head because my step-dad (no blood relation!) had MS, then he died a terrible death right after my mom died her own terrible death and not two months later I was diagnosed with MS. But wait! There's more! I researched a cure and went to Israel to have a stem cell transplant to kill my immune system and now I hopefully, probably, most certainly don't have MS anymore. 
Hi Mike in IT!

Or maybe I just like bananas a whole lot, insalate caprese, when I was born I was named Amanda but my parents changed it when they realized people would call me and my brother Andy and Mandy; I have one vaguely lazy eye. 
My tongue is a map constantly changing.

xo,
S

Sunday, April 24, 2016

10

I got you a phone for your birthday. Your face when we went to get it—oh, how I hope you hold onto that face. Pure, unchecked joy! Skipping. How we did a little dance in the parking lot. The dance of the first phones. I smiled with you, squeezed your hand because you still hold my hand when we walk together. Squeeze squeeze squeeze, how many more times do I have before your hand swings aimlessly next to me, not even noticing mine? The phone an opening to a world beyond being my daughter. Why did I get you a phone?
I got you a phone for your birthday because you know more about the California Missionaries than I do, because you can play Yellow Submarine on the guitar, because you hesitate before dropping in at the skateboard ramp, that hesitation sometimes stretching into minutes, the fear clinging to your face like a new skin. You are kind to your friends. You are kind to your not friends. Your tender heart shatters me the way possibility only can.

I got you a phone because you wrote me an essay telling me why I should get you a phone. You said that it would make you safer, that you would text me when you got places, call me if you had any problems. You said that we could chat throughout the day. You said that all your friends are getting a phone, but that is not why I got you a phone.

After we got you your phone we went to the grocery store to get ingredients to make you a cake. After I parked, I called you from the front seat, and you answered from the back seat. Hello? Hi, it's me. Hi! Both of us talking excitedly, shyly even, as if we had never spoken to each other before, the two feet between us a chasm of new. Later still I sent you a text when you were just down the hall in your bedroom, both of us fumbling to read who we were in those expectant gray dots...

I got you a phone for your birthday because you are right, you don't deserve everything, none of us do. I certainly don't deserve you, my 10 year old everything who teaches me so much, my beautiful spirit of a girl with a mouth the smile of water. I got you a phone because I never want to stop listening to you.

Happy birthday sweet girl.
Love,
Mommy

9, 8, 7, 6, 5 (too pregnant and cranky to write), 4, 3, 2, 1 (pre-blog)

Thursday, April 21, 2016

Parties Weren't Meant To Last

There is nothing I can say here that hasn't been said better a thousand times today in the countless articles and Facebook posts I've read about Prince's passing, but like most of you I feel the need to say me, too. 
Me, too. 

How silly it is to feel so crushed by the death of someone I never really knew, but there it is. I am crushed. Silly sad and mournful because while I never knew Prince, his music helped me know myself. 

(Purple Rain? How many countless nights I fell asleep listening to Purple Rain on my Walkman thinking about slow dancing with boys. When You Were Mine. Starfish & Coffee is still my very favorite song to walk around and sing out loud. Don't even get me started on Darling Nikki, how I wondered for years if he met her in a hotel lobby masturbating with a magazine meant she was looking at a sexy magazine while sitting on some sort of couch in the lobby? Or if she was maybe rubbing the magazine against herself? The logistics, I thought about the logistics far too much when I was younger. I mean, I guess I still don't exactly know the involvement of the magazine.)

Like I said, none of this is new. If you grew up in the 80s and 90s, then Prince surely had a role in your sexual awakening. Wendy? Yes Lisa. Is the water warm enough? Yes Lisa. Shall we begin? Yes Lisa. How could it not?

I have hinted at my love for Prince before, how gifable his eyes were back when we thought that just meant fuckable. He was my spirit animal, that funny sexy little man with the world's best side eye.

Now here we are and he is gone. Suddenly, and nothing feels right. I started a new job this past week which might feel like a non sequitur but it's not. Right. Yet. Nothing is, how for the past few weeks it has felt like the change of something consequential which is maybe why I haven't been writing here. Zoey turns 10 this weekend. 10. I swear that, too, happened suddenly, and I don't know who to eat lunch with at work, who to tell my jokes to, who to say stop. Did you hear? Prince died. Fuck. This can't be right. 

None of it.

xo,
S

Friday, March 11, 2016

The Art of Blowing Your Nose In Public

I have been sick these last few weeks. Nothing serious. Just the kind of sick that makes people put their bag on the empty seat next to them when they see me boarding the bus. The kind of sick that makes people at work kind of hate me for being there. The kind of sick that makes my nose red no matter how many times I pat concealer around my nostrils. (I have found that in general people don't like to acknowledge nostrils.)

Of course there are a thousand more interesting things I could write about. How well Zoey did on her report card, skateboarding, 4th grade girl drama, how Ozzy is obsessed with John Cena, his hair, my boobs. (Not just my boobs on their own but how Ozzy is obsessed with them.) I swear these things are interesting, at least more so than my nose.

A few weeks ago I shared something on Instagram that said Fuck work...Ima still go though. It was Monday morning, funny, it spoke to me. But it also spoke to the handful of Zoey's friends that now follow me on Instagram. I didn't even think about that until one of them commented with the wide-eyed blushing emoji. I immediately thought of that emoji that is supposedly chocolate ice cream but no one uses it for that. I scream, you scream, we all scream for! Shit. Not that the word fuck is going to kill Zoey's friends, but it's certainly not something I would have said to their faces.

Zoey asked me once if my blog is about her. Yes, I said. Kind of? Not really. I don't know. It used to be all about her. I guess I was a mommy blogger way back when, but slowly worlds began to collide and I've gradually realized that as my kids get older and more their own people, they are less mine to write about publicly. I mean, when Zoey was 2 I logically knew that she could read this one day, but now that she is 9 and follows me on Instagram I can see that the mythical one day is not that far off. I only hope that when she and Ozzy do read my blog, they will see how intensely I love them, love being their mom, but I also hope they get to know me as not just their mom, but as my own person, just like they are. Their own people whose privacy I have to respect.
JFK with his daughter Caroline wearing a JFK mask.
It's not as if I will never write about them again, but it's different now, or maybe this is how it should have been all along. Because of course I hate blowing my nose in public. Doesn't everyone? The trick is in owning it. Tucking your head down discreetly, yes, but using force, one, two, three, however many times it takes, and then efficiently, quickly, authoritatively using the tissue to make sure there are no boogers smeared across your upper lip. And then yes, writing about it on your blog if and when you want to.

Parent first, writer second.
I think I am almost not sick anymore.
xo,
S

Thursday, March 3, 2016

The Artist Formerly Known As Petunia Face

Dig if you will a picture...
Except I am pretty sure you and I should not engage in a kiss as I have been deathly ill with the flu or maybe just a bad cold, bronchitis, quite possibly walking pneumonia. Something tells me this is not the time to flinch from drama. Prince is playing tomorrow night nearby and I am still too sick (and didn't get tickets) to go. Meanwhile, Bryan is going to see the Dead Kennedys tomorrow night as if it is 1985 and he is not grounded with a sick wife and kids at home.

Whatevs.
When doves cry,
S

Wednesday, February 17, 2016

Rock and Rolla Ayatollah

I have this thing I like to call The Daily Susannah. It's who I see in the mirror each day. Because with my hair growing out from bald, I don't feel like myself. Sure, you'd think that a year later I would be used to it, but that's the thing: it changes every freaking day. I change every day. So one day I may catch my reflection and there is Scott Baio. A blink of an eye later and I am The Heat Miser

For awhile there I was rocking a mean Marv Albert.
Honestly I don't even know who Marv Albert is; he is not really on my radar. But he must be subconsciously because one day I looked in the mirror and there is was, clear as day. Why hello there Marv Albert slash self!

Many days I feel like a politician's wife until I feel guilty for being so misogynistic and remind myself that no, I am Geraldine Goddamn Ferraro, may she RIP.
Other days, when I am not so intense but a bit foppish and clever, I am Emma Thompson. Specifically Love, Actually Emma Thompson. On these days I think in a British accent. (And I do hope you read that sentence in a British accent.)

Lately I seem to vary from Ronald Miller when I let my hair go bushy...
...to David Spade if I flat iron it.
And then last night I saw my new self, and it made me want to do a little dance. Wearing tight pants.

Because you guys, this is me. Today's Susannah. Everybody's talking 'bout my tight pants...
Got my tight pants on.
Xo,
S

Wednesday, February 10, 2016

Naked

Zoey still takes showers with me. Not so much because she is concerned about the drought, but because she is worried about getting shampoo in her eyes. Which, on the one hand, I totally get. I mean, I still squinch my eyes shut fast to rinse my face because everyone knows that bad guys and ghosts like to fuck with you when you have your eyes closed in the shower. 

On the other hand, I haven't showered alone in almost a decade. 
Showering with a 9 year old is great for one's self-confidence. Why does your butt jiggle when you move? she says. What's that? pointing to something I am not even going to write down. We're running out of hot water, I answer, pulling her head back to get the soap out. 

I grew up with a mom that walked around the house naked. When my friends were over she would wear a June Cleaver organdy apron to appease me, despite the fact that it was see-through and tied open in the back. To this day my friends remember the palm tree tattoo she had on her ass. What can I say? It was the 70s. Now as a mother myself I would never go naked in front of my kids' friends. Instead I wear footie pajamas when I make pancakes after a sleepover, sometimes even with a bra underneath because support. And prude. And hot griddle. The names of my children are tattooed on the insides of my wrists.
You really have to learn how to shower alone, I tell Zoey. When you turn 10, I say, a line in the sand, like how the binkie fairy came to collect her pacifiers when she turned 3. You should treasure this, she says right after she tells me to move because I am hogging all the hot water, my almost 10 year old who is maybe smarter, or more manipulative, than I. Someday I won't want to take showers with you. And then she tilts her head back so I can rinse her hair.

The last time I saw my mom naked she was so sick, skinny, maybe 90lbs? Less? Everything hanging, thin, bony. I think I was helping her get dressed to go back to the hospital, drawstring yoga pants cinched tight and a cotton wrap. We stood in her tiny apartment and hugged for a very long time, probably the last time I hugged her while standing, her shoulders slivers of body, how small she was, how small.

Told you--bad guys and ghosts like to fuck with you when you have your eyes closed.
Zoey turns 10 in two months.
xo,

Sunday, January 31, 2016

The Rumors Of My Death Have Been Greatly Exaggerated...

Because truth is always stranger than fiction, Bryan received a handwritten note from Kaiser Hospital yesterday.
Dear Mr. ______,
We were saddened to hear of Susannah's passing.
We hope that the good memories of life with her will help you through this difficult time.
Dr. Something or Other Pan
and
The Staff at Oncology/Hematology/Infusion
Kaiser Santa Clara

...

I mean--???

Bryan was doing whatever guys do when they just kind of stare into the engine of their truck when I walked passed him to get the mail. Hey, you got something handwritten from Kaiser, I said, want me to open it? So I did, his head under the hood of his truck. I'm dead, I said, and then he stood up and we just kind of stared at each other.

It sucks to find out you're dead as the result of a clerical error, particularly two days after you have gotten such good MRI results. But there it was signed in black and white: I had passed away. And they were sorry about it. 

So was I.

Even though it's a few hours south, Santa Clara is where I had to go for hematology after I returned from Israel. Apparently, they oversee an HSCT program for leukemia at Stanford and are familiar with stem cell/bone marrow transplant after-care. But I haven't seen them in a few months now. Just another huh? in the long, strange story of my health. I am dead to them. What can I say? You win some, you lose some.

Of course I have put in a call to let them know that I am still alive. Unless this is some M. Night Shyamalan movie starring me as a dead woman who thinks she is still alive, in which case this is a really cool blog. But I don't think so. I think this blog is just kinda' meh and they have me mistaken for another Susannah with a husband named Bryan whose good memories of life with her will have to suffice to help him through this difficult time. That time. Whose time?

All I know is this: if I am dead, then I am here to tell you that there is no tunnel of white light. Just squabbling children, tortillas with black beans and extra cilantro, and a sunny, cold Sunday afternoon in a house that smells like fresh laundry. Don't worry--if this is it, death is pretty fucking amazing.

xo,
S

Thursday, January 28, 2016

Scanxiety


After Bowie died I saw this quote a lot, maybe too much, the specter of a follow up MRI looming over me. "When are you going to do it?" everyone asked me, and I would try to shrug it off. "I'm too scared," I would say, feeling that by admitting that I was doing enough as it was. After all, there were no doctors insisting I had to. Because I did not partake in the U.S. clinical trial but had my hematopoietic stem cell treatment in Israel, I am kind of on my own here. Did it work? A question that can only be answered in the negative, which is the suckiest kind of question there is. The only test that would give me any answers was an MRI, and only then would it tell me if it did not work. So I didn't get one.

6 months went by. It was July then, and I certainly didn't want to cast a shadow on our summer. We went to our family reunion in August. I didn't want to deal with it then. September, school year, then the holidays. After Christmas, I told Bryan. I'll do it after Christmas. Well fuck me if Christmas didn't come and go. We took the tree down and I still hadn't scheduled it.

Bowie was right about fear. It was there as I played MagnaTiles with Ozzy on the carpet. Why do I feel that tight band sensation across my torso? What's that? Walking to work wondering if my legs felt heavier than the day before. Every single second splintered with the gnawing dread of please god no in my stomach. Did it?

Finally Bryan said I owed it to him and the kids to get the MRI. He said that we can't be in denial. If it didn't work then we need to be proactive about next steps. Of course that got to me, the kids. I certainly didn't want to do it for myself, but I had to do it for them. Fucking kids, man. Whether it's trapping a spider under a glass or getting a brain, cervical and thoracic spinal MRI with contrast gadolinium dye, they kind of make you have to be brave.

So two weeks ago I scheduled the MRI for this morning, telling myself I could cancel it at any time. Then I proceeded to not be able to eat, to sleep. I pooped a lot. What can I say? My fight or flight response is strong. This morning I woke up at 4:30am not able to fall back asleep for my 7:15am appointment despite the Excedrin PM I took. The best way to describe how I felt is a bit of a cliche, but it's spot on: I wanted to crawl out of my goddamn skin. 

By the time I got to my MRI appointment my teeth were chattering. I signed all the usual papers, made small talk with the technician as she loaded blankets on top of me thinking I was cold even though I was actually a little sweaty. Then I spent 2 hours inside the tube, you know, just me, the banging clanging beeping of the MRI, and my thoughts. My fucked up, anxious, worst-case-scenario thoughts. It was a time.

I should just cut to the chase, shouldn't I? We will email your results either today or tomorrow, they said, so what I heard was refresh your email every few minutes because it could be right now. Or now. Now?

Now. First I got the results for my brain scan. Normal. No new lesions. Stable. All the words I wanted to hear. And then I waited for the spinal results. Refresh. Refresh. Refresh. Freaking out that they were taking longer. Would it take them longer to type up a report on new activity? Then I got that email, and you know the other cliche about the blood draining from your face? Also true. I opened the email: Normal. No new lesions. Stable.

And then I fucking lost it. Crying, shaking, happy. I called my dad who started sobbing on the phone (sorry to blow your cool, Dad). Bryan all shiny-eyed. All of us stunned with the relief of being able to cry happy tears for the first time in a very long time.

You guys. It worked. My treatment. I know I said that the MRI would only be able to tell me if it didn't work, and that's still true, but so is this. It worked. For now. My MS is in remission. Yes, I could probably go through all this teeth-chattering-poop-inducing-anxiety in a year or so and get another MRI, but most people who have HSCT only get one follow up MRI, then opt to have more only if their symptoms get worse. 

So if the lowest depths of misery is living in fear, then what does it mean when you conquer that fear? Everything. It means fucking everything.

With so much love and gratitude,
S

p.s. If you or anyone you know has MS and are curious about the treatment, here's a recent article on healthline.com about the U.S. clinical trial performed by Dr. Burt at Northwestern. It is difficult to be accepted into the trial or treated off-trial, but there are also many international centers that offer HSCT for MS and other autoimmune diseases. If you would like more info, please don't hesitate to email me.

Wednesday, January 13, 2016

Happy Birthday (Just a Thing That Happened to Me)

Since the beginning of January I've been tripping myself out with the this time last years.... (Such a fan of the mind fuck, as evidenced here and here and here.) This time last year I was saying goodbye to my family. I was flying to Israel. I was getting a picc line inserted. I was having chemo. I was reborn. (Which sounds vaguely Christian, though that is not what I mean. Not at all.)

This time last year. I held onto this paper as if it could explain how the hell I got there, to Israel, sure, but also to MS. How? Why? Is, Am, Are, Was, Were, Be, Being, Been. Lama? Which is why in Hebrew. Only it isn't really, because לָמָּה? Nothing made sense, makes? not even my tenses here in the retelling, in a country of a different alphabet in a reality that I never ever in a million years would have thought possible. I held onto those days counting down, -6 and -5 Campath, -2 and -1 Fludarabine, Cytoxan, everything measured per kg and m2, bottles and boxes of pills lined up on the table in my hotel room, this one once a day, that one twice, those 3x/day, drink 3 liters of water. Cyclophosphamide, alemtuzumab, omepradax. Later, when I was allowed to go outside, I would think of the mangy street calicos as names of all the drugs. Zylol to protect my kidneys, also a pretty name for an ugly cat.

It seems impossible that this was only one year ago, much less that it happened at all. Did my neutrophils really drop so low that I didn't have an immune system? Did I really have MS? Do I? Once again the tense all sorts of huh. Every once in a while I hear the jingle to Trivia Crack, an app I played incessantly alone in my hotel room in Israel, or I hear the ring of a Skype call, and I am right back there, that feeling, that white room, far away from everything ever and I can't breathe from the something I can't even name.

(Other times I tell people that if this treatment worked and I no longer have MS, then the whole ordeal--getting MS, researching the treatment, going to Israel, having a bone marrow transplant, chemo, getting sick, getting healthy--if it worked, then this whole ordeal is the best thing that has ever happened to me. It has made me feel more alive, more appreciative, more present, more more. More afraid, more angry, more sad, because of course, if it didn't work, then it's the worst thing that ever happened to me. And then I laugh a little. Ha.)
(Ha.)

This time last. Here I am today. I hate my hair growing out from chemo, but I also have a new found sense of whatever. The best thing that ever happened to me, the worst thing that ever happened to me. Either way, it was just a thing that happened to me. 
This time now.
xo,
S

Wednesday, January 6, 2016

Janet

I have a friend that I have not yet met. Her name is Janet and we sit next to each other on the bus most every day.
I don't know if Janet is really her name. Maybe it's Rebecca or Tish or Autumn, even. Still, I think of her as Janet, even though I know a Janet in real life which makes it even more realistic, how sometimes you have friends with the same name. 

I have never spoken to Janet, but almost every day she gets on at the stop right after mine, and almost every day she sits next to me. This has been going on for a few years now. Even when there are other empty seats, she sits next to me. I don't so much mind. She has narrow shoulders and sits small. I hate it when a large man sits next to me, his upper arm warm and knowing against mine.

Janet is smart, I think. A little older than I am. Her hair is black with smatterings of gray, like how a kid might have a smattering of freckles, only it's not cute, not really. For some reason I don't think Janet realizes just how gray she's getting. She works in the financial sector, frustrated sometimes that she did not do anything more with her painting. She used to love to draw.

I admire much about my friend Janet, most of which is how she has a way of saying nothing eloquently. In the morning she holds her phone in her lap as shiny as a beetle. I am good at keeping my head straight while darting my eyes to her screen. Once I saw her write something to someone on Facebook in Tagalog (I think). (Janet is part Filipino.) (I think.) When she is not on Facebook she is on Shopbop, scrolling through pages of sleeveless shifts of pink and orange. This makes me sad, mainly because she only ever wears neutrals, sensible fabric and shoes, and she would really rock the shit out of a sleeveless pink and orange dress if she would just let herself buy one.

Janet has not been on my bus for the last few days. She is probably sick. Or on vacation. (I hope she has not been fired.)

A woman named Deb sat next to me today. She has also been on my bus for years. I am not particularly fond of Deb, even though I have not yet met her either. She has frizzy hair and says hellooooo! to the bus driver as she scans her commuter card. How are youuuuuuu? to people she knows across the aisle. Can you believe all this raiiiiiinnnnnn? to no one at all. I close my eyes and miss Janet. My friend Janet.