Thursday, June 25, 2015

:O :O :O :O :O :O :O :O :O :O :O :O :O :O :O

I have not been here much because I have been everywhere: the pool, park, home, lather, rinse, repeat. Which reminds me! Today I got my first real haircut! I feel like I should have gotten a keepsake photo and a lock of my hair in a baggie to put in my baby (immune system) book. I didn't, though, as the hair that was cut fell down my smock looking more like pubes than cute. 
I am grasping for time. Gasping/grasping, time/air, same diff. 

When I was in Israel feeling super sorry for myself and very far away, I found a beach house to rent for a week. I needed something to look forward to, an "after" that looked nothing like what was then my "now." I knew I couldn't go anywhere truly tropical with a new immune system, so I rented a house in Stinson, a beach town just 30 minutes away from home. It felt so distantly future then, the reservation booked for the week before I had to go back to work, and now that after is here. Happily. We leave for Stinson tomorrow. I just had my first haircut. Time is funny, both ha ha and strange.

And then there is this. Yesterday I had another appointment with my nutritionist. For one hour we talked about my bowel movements. Shooting the shit, I guess, though I had to work hard at keeping a straight face when it came to description. I settled for not looking her in the eye. For one hour. You'd be surprised how much there is to talk about poop. But this...this is my new normal. It happens.

And I am grasping at it. Gasping. All of it. Fresh pears and berries, the smell of chlorine, little bodies wrapped tight in towels, my hair that looks like pubes, the kids fighting over ownership of tiny plastic crap, my crap, afternoons at the library followed by Slurpees and family movie night.

Which sometimes means we watch a movie, but more often than not means Zoey makes a movie starring her brother. I mean, COME ON

Inhaling deeply and swallowing hard. Gulp.

xo,
S

Wednesday, June 17, 2015

Refilled Is The New Fulfilled (You Can Totally Steal That From Me)

I admit: I don't always return grocery carts to the return thingie if it's far away from my car. Sometimes I don't wash my fruit. I wad fitted sheets into a ball rather than attempt to fold them, and I love motivational quotes. I am mildly ashamed of these things, but whatever. And yes, that itself could be a motivational quote, albeit a crappy one. (Oh well also being one of my faves.)


Wondering if the glass is half empty or half full is not the point. It is refillable. I saw that quote the other day and it stuck with me. Not to get all Vicki Gunvalson  "love tank" on you (and if you get that reference then you are the other half of my BFF necklace), but I feel like my glass is full again. 

The last two years have been shit. The glass was bone dry empty and I cut my lip on the edge, that kind of shit. If you're going through hell, keep going, Winston Churchill told me, so I did. Bore down and forward, fuck this. Which is fine for a grown up (not really but yeah), but try telling that to a 9 year old. A 4 year old. You know what, son? Life sucks sometimes. It's unfair, cruel, tragic even, relentless. Deal with it.

I didn't know how to deal with it. The kids. The last two years didn't just happen to me; it happened to my family. And I could see it in Zoey and Ozzy. How confused they were when my mom got sick, how sad they were when she died. Allen dying. When I was diagnosed, we told them in bits. I didn't want them to connect my MS with Allen's death from his MS even though it was staring me in the face. There were months that I was mentally removed from everyone around me simply because I couldn't think beyond my own central nervous system. I tried to be a good mom during that time. God, I hope I was a good mom, but it's hard to know because I was so far inside myself.

So these last few months of recuperation...it hasn't just been about my immune system growing stronger. It's been about healing my family. Showing the kids that they are loved, safe, secure, always have been and always will be.
For that I am eternally grateful. I have been able to take enough time off work to really be there for Zoey and Ozzy, picking them up from school, visiting their classrooms, taking them to soccer, dance, fro-yo. One of the very best things I have done these past few months has been volunteering in Zoey's school library. I pretty much have to take a Silkwood shower afterward because germs, but I cannot tell you how gratifying it is to watch kids connect with books, to see Zoey's eyes light up when she sees me behind the desk. True it isn't one of the antiviral meds I have to take now, but it is just as healing. And if that's too cheesy for you, then I will also say that it is so freaking fun to play librarian and check the books out. Childhood fantasy fulfilled.

I go back to work in a few short weeks. Which will be hard but normal, and normal is good. All I want is to be normal. How was your day? Fine. (Fine is actually quite extraordinary.) But finances being what they are, I have to work. And since I have to work, I am lucky that I love my job. Of course I love my kids most, so I will miss the day-to-day of pick up, grocery shopping at noon, of snacks at 3 and the smell of books worn ragged by kids who turn the pages with a little too much force. I will miss this.
In some ways, some begrudgingly big ways, this whole thing has been a blessing. It taught me, Bryan and the kids that we are resilient, strong, that we are there for each other no matter what, and that while that stupid glass is going to get knocked over sometimes, spilled, shattered drink/drank/drunk, together we can fill it back up again and again until it actually spills over.

From my family to yours, santé !

Xo,
S

Thursday, June 11, 2015

Step 1: Admitting I Have A Problem (I Have A Problem)

I'm in Rehab, you guys.

Which feels so glamorous to say. 
Don't get mad. 
I know addiction is serious. 
I come from a long lineage of alcoholics and addicts, so I know the reality of what it really means. But I have always been the boring one, the one to say no, I'm good, thanks. I don't drink, don't smoke. 
What do I do?

I am a hummingbird, I tell people, which makes me feel exotic and light when really I am just saying I exist on sugar. Chocolate croissants for breakfast, nutella on bananas, fruit juice, jelly beans, cookies, donuts, those little granulated jelly slices that look like an orange? I am an equal opportunity sugar-slut. You got it, I'll eat it. And if you don't got it, I'll go out and get some.

The only thing more boring to me than trying to find a specific type of hinge in Home Depot is listening to people rattle on about their diets. Learning dietary information is like trying to swallow a big vitamin. My throat closes up. I shut down. Can't. Get. It. In. But I also can't seem to ignore all the connections between diet and autoimmune disease. Gut, brain & neurons, oh my! And fuck it if I'm not a mom who owes it to my kids to wander the cement wide aisles of Home Depot while trying to swallow a very dry vitamin.

Gulp. Here we go.
I checked in this morning. And by "check in" I mean I stopped at Starbucks for a venti chai and a chocolate croissant before I had my first meeting with the nutritionist. It's not actually a residential program, but I'm going to pretend it is because that will make me take it more seriously, and yeah, it also makes it more glamorous. I am at The Betty for mah belly.

(Let me just say that I am grateful that heroin is not my drug of choice. If it were, I would be dead. In anticipation of my appointment this morning, I went on a bender last night with some pharmaceutical-grade Tollhouse cookie dough. I actually felt nauseated, I ate so much.)

(But not sick enough that I didn't have two cookies when I woke up this morning.)

My "sponsor" is a woman named Willie who I already love. Like any good sponsor, she said I can call her anytime, day or night. Which is good, because already she warned me that people with autoimmune diseases cannot tolerate gluten, and most likely dairy. Sugar is a natural no. Over the next 4 months I will be getting blood work done to see what's going on in my gut, and together we will teach me how to eat again.

More importantly, she will teach me how to eat so that my children will grow up seeing their parents eat (and stay) healthy. Lead by example, and all that...

You probably already know this, but I learned that sugar produces a release of dopamine from the reward center of the brain, a response that mimics that generated by taking drugs. And this is not just sugar found in the usual suspects, but sugar found in processed foods, breads, grilled cheese, all my go-tos. All this time I have felt secretly (I hope) smug that I somehow ducked the genetic addiction that strangles so many people in my family, only to find out that I am just as addicted as anyone else. I'm just not as fun at parties.

So that's that. God grant me the serenity...

xo,
Susannah 

p.s. I will try not to talk too much about this, both in real life or on this blog because shut the fuck up, that's why. Unless you're interested. In which case, keep coming back, it works if you work it.

Wednesday, June 10, 2015

Dear Diary: Today I Killed 5 Butterflies

You know how sometimes my posts sound like an emotional teenager writing in her diary? (What? You think I didn't know?) Well this may well be the angstiest of them all because I am trying not to see the symbolism of me murdering a bunch of baby butterflies.

Look! Cat paws! See? I am not all Sturm und Drang.
Even if it was cat paws that actually did the killing. See, I ordered live caterpillars for the kids along with a butterfly house. We put it on my desk and watched as the fat little caterpillars slowly spun themselves into chrysalids. I am such a good mom, I thought, telling the kids about the beautiful miracle of life they would see next. 

What they saw next was more like The Killing Fields.

We came home Sunday afternoon to find the butterfly house on the floor. The cats had gotten to it and butterfly blood was everywhere. I mean. Butterfly blood. What the what?? Except when I looked it up online I found out it wasn't really blood but red meconium, which is just a fancy way of saying butterfly shit. The poor little not-yet butterflies were so scared they shit themselves. I am such a good mom, I thought as I cleaned up butterly shit and chrysalid carcasses.
It doesn't mean anything, it doesn't mean anything, it doesn't mean anything. Right?

xo,
S

Monday, June 8, 2015

Who We Were in 1987

Don't go down to the basement. It's a horror flick fall back but also somehow exists in our collective unconscious as true. Basements hold the boogeyman and his secrets. At least mine does.
Somehow I have become The Keeper Of All The Shit in my family: photo albums, letters, mementos, old books, boxes and boxes of what that we put in my basement after my mom died. This is helpful on a #TBT when I want to find an awkward pic of me in the 7th grade, but not so helpful when I stumbled across my mom's notes that she took during her and my dad's divorce. Opening that box was like opening a crypt of pissed off snakes. Not that I read anything. Just poked around, got bit, then sealed it back up. It's been a week since I found that box, but still I hear it down there like Poe's Tell-Tale (Broken) Heart. Tear up the planks! It is the beating of this hideous heart!

So why don't I just get rid of it? That box? All of the boxes even? Good question. 

When my mom was really sick her sister, K, came to visit. My mom and K had not spoken for years, some sort of vicious falling out, but my mom seemed happy to reconcile with K. I mean, it was her death bed, and as dramatic as that sounds, death beds are real.  There is no time to rehash old who-did-whats on a death bed.

K was very helpful, spending lots of time with my mom in Hospice, cuddling with her, talking to her. I was beyond grateful, beyond overwhelmed, beyond in disbelief that it was all happening. So when K offered to clean out my mom's San Francisco apartment I said yes. Yes! God, yes, thank you.

Because my mom was a bit of a hoarder. Which might be like saying someone is "a little pregnant." I mean, either you are or you aren't, right? I don't know. I guess I'm not comfortable calling my mom a hoarder but it's important to know what her apartment was like: tiny and stuffed with clothing, books, journals, art supplies, jewelry, nursing binders bloated with cat piss stacked beneath her bed. We're talking hoarder-stuffed with a side of shopping addiction. So yeah. Yes. Please clean out my mom's apartment.

It took K weeks to clean it out; it took my mom weeks to die. Every day I went to Hospice and sat with my mom, and every day K would report on what she had gotten done at the apartment. I did not have the strength to see for myself, to go to my mom's apartment. So I just smiled, thanked K, held my mom's hand, waited.

Let's back up a few months to when the oncologist told us there was nothing else they could do, my mom in a hospital bed, me and my dad sitting on the edge. My mom told us that she had written each of us letters, that they were in her apartment. I cried and we all held hands, every single second surreal.

So when K said she would clean out the apartment, I told her about the letters. Please put aside the letters, I said. She said she would. Simple, right? The act of your mother dying. All of it a strange dance trying to figure out what to tell the landlord about when she will be "moving out." You don't know the steps to the dance, when to cut off electricity, if they will even let you since it's not your name on the account. Falling over your feet, feeling your way through it all with your hands that just so happen to be numb. Did she have a deposit? How the fuck would I know?

There was an afternoon, maybe a week before she died. At this point my mom was unresponsive, though the Hospice pamphlets said she could hear us. K came to say goodbye, the apartment was cleaned out and she was going home. Did you set aside the letters? I asked. K was on the bed with my mom cuddling her. I was in a chair on the other side. We spoke over my mom's body. No, she said. You know, there were so many journals. Stacks of them. Journals that your mom wrote over the years, letters to you, Andy, Allen, your dad. I destroyed them. I figured if she had not mailed them to you then she did not intend for you to read them. Any of it. I lit some of them on fire and took the rest to the dump. I was protecting her.

Of course the conversation didn't go as clean as that, but that was the gist. Sitting by my mom who no longer reflexively blinked, her eyes wet with ointment that the nurses put in, I felt as if she were dying twice. The mom in front of me, and the mom I was supposed to know through her letters and journals.

To say I was angry is an understatement. I felt violated. Robbed. So fucking pissed and crushingly sad. I went out to the back deck of the Hospice and called my dad, sobbing. I knew the letters and journals would not be easy to read. My mom was a complicated person, but she was MY mom, and she wanted me to understand her. I desperately wanted to understand her. K had no right to make that decision for any of us, K who had not spoken to my mom in years.

A few days later I went to the apartment with my dad. There were piles of things that K thought we would like: photos, books, boots (?), nursing binders that had to be destroyed a certain way due to HIPAA law. My dad and I sat on the floor and paged through the nursing binders. My mom was a prolific journal-er, forever full of emotion and opinion. Luckily she had written some personal stuff in those binders, which I saved. And yes, they were hard to read. But I'm glad I did, even if it was just a sliver of what my mom wanted to say.

K was long gone when Allen died a few months later, and that house was tenfold the hoarding nightmare of my mom's apartment. My dad, brother and I saved what we wanted, and hired a professional estate service to do the rest. Now my basement is stacked with boxes of divorce papers and photographs, drawings that my mom did in the margins of everything, and I'm afraid to actually throw anything away.

What if she's still in there somehow? What if there is one piece of paper that will make it all make sense? My mom. My family. I know this is silly. Stupid, even. But I can't let it go. At the same time, I am resentful of those boxes stacked in my basement. Why do I have to be the one carrying it all?

I daydream sometimes of throwing it all away, the photos, letters, newspaper clippings, boxes of shit that meant something to someone at one time. To have a basement clean save for who I am all by myself, my family. But for now I can't. Instead I stare at old photos trying to figure it out. What were we all thinking? When did it start to turn? Because there was a moment in 1987 when we stood together as a family and waited while someone took our picture. A moment when we kind of smiled and said cheese. Boxes and boxes in the basement and the big question remains: Who were we then? And why do I care?
xo,
S

Wednesday, June 3, 2015

Once You See It, You Can't UnSee It...

Holy Scott Baio balls, people! I have turned into an aging Chachi in Charge. I mean. I couldn't quite put my finger on it, who I kept seeing in the reflection of windows. Here I was hoping for Jean Seberg, Edie Sedgwick, Michelle Williams, you know, someone who can rock the feminine edge out of a pixie, when it dawned on me...Scott Mothereffing Baio. And we're not even talking about the limpid Tiger Beat days. We're talking now. And I'm pretty sure he is older than I am. Because yeah, I Wikipedia'ed the hell out of him. 12 years older.

Oh well. Could be worse. (Could always be worse.) I could look like an aging Willie Aames.
Wait. The hair? Goddamn it!

xo,
Susannah Not In Charge

Friday, May 29, 2015

4

Dear Ozzy,

No one makes me swear as much as you do. Goddamn it, stop! Did you hear me? Get down! Sshhh! Go to sleep, get back here, you know better than that, it's not funny, don't you dare...god fucking damn it, look at me! 
And when you do.
Your eyes are the most beautiful hazel, your lips red and always wet. Sometimes you curl them in a way that can only be described as a shit-eating grin. Funny how a love letter to a 4 year old could have so many bad words, but this is you, the very best boy who brings out the very worst words. Because goddamn fucking-A, how I love you feels like a well-timed bad word exploding inside my head, my chest, uncontrollably, viscerally, everythingally.

You test me. Poke your fingers at my edges, look at me knowing full well, and sometimes I fail that test. Like lately. We need to break him, I said the other day, only half joking. Like a horse, break his spirit so he behaves, but of course I don't want that. Would not let that happen. You are exactly who you are and exactly as you should be, and I will live my life protecting your spirit, your you-ness, even if that means I hold your hand as you walk across the tops of fences. Because at night when I lie beside you trying to get you to sleep, you turn your head to kiss me with your eyes closed, your cheeks sucked in, lips puckered like a fish. And just as if I were truly underwater, I cannot breathe but also know that there is no need to panic. 
So here we are. Tomorrow when we wake up you will be 4. And just like every morning I will start the day telling myself not to lose it. But goddamn it Oz, you funny, whiny, silly, smart, button-pushing, creative little Mister Man of a boy. If there is one thing I need you to listen to me when I say, it is that I love you. With every expletive you are not allowed to use. Just the way you are.

Happy birthday sweet boy,
Mommy

3--didn't write one last year :( 
2
1
Introducing Ozzy
Right before you were born

Tuesday, May 26, 2015

And All The King's Horses And All The King's Men

As I write this Zoey is asleep on the couch behind me. You know that feeling when your phone rings and it's the school? That, but I was home. Just a tummy ache, so I drove the 5 minutes to school thankful that I am not yet back at work, 40 minutes across the bridge.

Over the weekend I got the news that a woman who had HSCT in Tel Aviv passed away. She was more disabled than I, maybe older, I'm not sure. That's not very factual but it's as close as we are going to get. During chemo she went into anaphylactic shock which caused multi organ failure. She was in the hospital for a few weeks in Jerusalem, then flown back home to Florida where she was in the hospital for a month or so. Ultimately she ended up with heart, renal and respiratory failure. On Friday her husband informed the HSCT forum that she had died. 

Factual should answer the question why, but it doesn't even try.

But those are the facts that we know. This is the feeling that I have. In some ways I feel like the treatment was too easy for me. Did it work if I was able to ride roller coasters this weekend at my kids' school carnival? The Typhoon, The Tornado, all but bathing myself in Purell but still, I was there. I mean, there is a numb spot on my pointer finger as I type. Just a spot. At the tip. Of my finger. It may always be there. How long has it been there? Did it work? Why am I so lucky to have made it to the other side relatively unscathed while someone else died? Why am I so unlucky to have MS in the first place? Why am I so lucky that my child is asleep on the couch with what may or may not be a made up tummy ache after a weekend eating cotton candy?

Why is a real fucker, a question that never gets answered as it spits out a flippant why not? I don't know. I knew it was a risky treatment, but knowing is nothing really when we're talking about a heart that stops working. 
This morning the cats knocked over my human anatomy model, so while Zoey sleeps I will try to put it back together again. The muscles are easy, but the vascular system, the bones, the see-through bits, those are almost impossible. I am lucky, unlucky, I am lucky again, sung to the tune of Dem Bones, Dem Bones, Dem Dry Bones. (Now hear the word of the Lord.)

For C.Z.

xo,
S

Friday, May 22, 2015

Feel Good Friday For You

I remember the day this happened, the feeling of shared inspiration, the sense that we were all one of the good guys. I walked around with a lump in my throat while smiling silly at anyone I passed. We all did.

I am so proud of my city, of this kid, of humanity. I cannot wait to see this movie and bawl my motherloving eyes out.

#ThanksBatkid

Xoxo to San Francisco and you,
S

Thursday, May 21, 2015

Fun Fact: I'm On Medium

Is it weird that I kind of want this Fun Fact to be true? I mean, not really, but a little? So I can blurt it out in lieu of small talk? I don't know, yes. That's fucked up.
I'm fucked up. Anyway, I posted a story over on Medium today. Pretty please come visit me over there.

xo,
S

Monday, May 18, 2015

The Treachery of Images (A Cumulative Tale)

It's just a chair, it's just a chair, it's just a chair...
Ceci n'est pas une chair. Or at least not the chair. No, this is the chair that replaced the chair that I took down to the basement to make room for the desk, the desk at which Ozzy is now sitting. This is the house that Susannah built.

My mom gave us that chair, the other chair. The overstuffed chenille rocking chair née chaise that I sat in while nursing/trying to nurse both my babies, the one that we cuddled in all three at once, read books in, the one that sat in the corner of Zoey's room, then Ozzy's. It now sits in a corner in the basement along with a red scooter that is too small, the couch with the broken back, boxes of photographs and the litter box. 

How can we get rid of that chair? Don't get rid of that chair. Believe it or not, Bryan is more sentimental than I. It's just a chair, I tell him, knowing full well what the basement means. It's just a chair, it's just a chair, it's just a chair...

Ozzy loves to draw. A boy who does not stop thrashing sits still to scribble-talk stories of boats crashing and monsters, dinosaurs, oceans. So when someone offered this hand-me-down desk I took it, loving how the top flips open to hold crayons and paper.
Last week I stained the wood a dark blue and hid decades worth of other peoples' stories with stickers from the surf shop down the street. Ozzy came with me and we sat and watched the older boys skate the ramp until we got hungry and went home. 
Now that the desk is finished, Ozzy says he loves it. Calls it his workspace, tells me to leave (but don't shut the door). From the other side of the house I can hear the scratch and grind of crayon hard, pock.pock.pock. as he dots something, rain or--? He does not know how to draw or do anything without intensity. 
It's just a chair, it's just a desk. A desk that was owned by two brothers from another family before him. It's just a place for a boy to create the world, whole worlds really, worlds enough to stack inside until the top no longer closes. 
This is a desk that is a cumulative tale, not the story of Susannah's house or Ozzy even, but a story of vast, fabled oceans, of life interlinked, of things that get put in the basement and back again, of boys that grow up, of overstuffed chairs all tattered and torn, the mom at once both happy and forlorn. This is the house that we are building.

Wednesday, May 13, 2015

Hair I Go Again...

Tell me the truth: does this shirt make me look like The Boy In The Striped Pajamas?
Incidentally, if you have not yet seen or read The Boy In The Striped Pajamas, I urge you to do so immediately. Excellent book/movie. Not so good look for une femme d’un certain âge.

Not to mention un certain coif. I have found that many of my go-to looks don't "go" with my new 'do. For instance, my once-beloved skinny camo pants take on a decidedly aggressive air with very short hair. Then there's my sweater with the motorcycle on the front, my Rolling Stones tee, the raglan shirts that I bought in the boys' department. I used to wear these with all the confidence of long hair covering my neck. Don't even get me started on my favorite rainbow striped bikini. Wearing it now I feel as if I am making a statement that I don't intend to make. I mean, I'm cool with that statement. I support and respect that statement. But it's not my statement.

I made a Pinterest board for pixie cuts. Looking at it makes me excited for what is to come in an inch or so until I realize that all my pins are 100lb 25 year olds who probably wouldn't know a nasolabial fold if it smacked them in their angular faces. #Filters4Lyfe

I've decided that my style muse is Jean Seberg sans whatever led to her mysteriously od'ing on barbiturates in Paris. I know she was American, but she's got the insouciant french thing down pat.
I am pretty sure that the pesky space-time continuum does not allow me to be an ingenue anymore, but I strive for what comes next. The wide-eyed pixie after the elasticity around her eyes has gone slack. Hey, it happens.

But seriously. It's not too late. I can still return it. Does that shirt make me look like The Boy In The Striped Pajamas?

xo,
S

Monday, May 11, 2015

What Not To Say: The Short List

This is one of those posts that should start with an apology. Or at the very least, a weighty disclaimer. Because the awkward--oh. The awkward is an Andy Samberg skit played by Michael Cera dry humping Kristen Stewart that you have to watch while sitting next to your parents on the couch. 
I know.

Last week a line of empathy cards (not sympathy cards) made the rounds on the www, and if you haven't seen them yet, they are genius. Created by Emily McDowell, a designer who battled Hodgkin's lymphoma, she says, "The most difficult part of my illness wasn't losing my hair, or being erroneously called 'sir' by Starbucks baristas, or sickness from the chemo. It was the loneliness and isolation I felt when many of my close friends and family members disappeared because they didn't know what to say, or said the absolute wrong thing without realizing it."

Now I am lucky enough that my community rallied around me with more support than I ever knew possible. There has only been one or two people who disappeared because of whatever reason; otherwise, people I didn't even know well are now lifelong friends. If anything, my illness and treatment has turned me into a people-person, and if you know me, then you know that before this I was more of a stay-at-home-eat-baked-goods-and-give-side-eye-person. So while I experienced little loneliness or isolation, I have been collecting my very favorite stories of "people who say the wrong things" because, let's face it--awkward turns positive the more you point at it and laugh.
This is where the disclaimer is crucial. I have been a sayer of wrong things myself. Exhibit A: when my good friend was in the middle of chemo for cancer I offered to get groceries for her. What do you need? I said, Paper towels? Bananas? Bread? Shampoo? The last word hung in the air like a slap. She was bald. And that's just the one I know about. I am sure I have said a thousand other things that meant well but came out crooked.

I also want to say that this post is not directed at you. Whoever you are. Because I guarantee that almost everyone who knows me has said at least one of these things at some point. And I still love you, or at least like you a lot. I can also guarantee that I would probably say one of these things if I were you. But I'm not. I'm me, and from over here these things sound wrong. Even though I know they are said with the best of intention.
So let's do this.

1. When will you know if the treatment worked?
Hm. Um. Let's see. There is a sliding scale of wrong to this question. That is, if you know me very well and we are having an intimate, real conversation in which it wouldn't be a non sequitur for me to ask you about your deepest fear and expect you to honestly answer, then yeah, valid question. But if you don't know me well and this question is posed during small talk, then no. Just no. So when will you know if it worked? Would you ask a cancer patient when she might know if her chemo worked? 

2. Tell me about your disease/treatment/what happened/prognosis/I've-read-your-blog-but-need-more-explanation/I-went-to-high-school-with-you-and-even-though-we-weren't-close-then-and-haven't-talked-in-20-years-I-want-to-hear-the-story-of-your-diagnosis-oh-yeah-say-it-real-slow-and-sexy-like...
I think that because I blog about so much people expect me to be an open book all the time. At dinner parties, on the street, in the parking lot while trying to find quarters in the bottom of my purse. While I know that most questions come from a good place, sometimes it feels as if people think I owe them something, to entertain them with my health. And I don't want to, or at least I only want to on my terms. However! And this is a big however. If people want more information because I can be of help to them or someone they know with MS and they are curious about HSCT, then yes. I am a dog-eared open book with a clear table of contents and a section thick with thank yous. Not only do I owe you something then, but I owe the world if my experience can help.

3. Every time I look at your face I want to cry.
Yes, someone seriously said this to me, and yes, I still laugh about it. The good news is she later apologized. The bad news is she is not the only one to say this. Just this weekend someone else asked me to tell her the story of my sickness and treatment (see above), and then said she didn't want to cry. (Tip: then don't.)

4. So this is why you sometimes walk funny.
Nothing like pointing out that I walk funny to make me feel good about myself, life and the general state of global environmental politics. Granted, this was said by my friend who I offered shampoo to when she was bald, so touché. The important thing is that she is still one of my very favorite people on earth, so please know that if you have ever said one of these things I probably still like you. Except if I didn't before. In which case. Awkward.
No harm, no foul. 
Happy to help.
xo,
S

Wednesday, May 6, 2015

More

I was cleaning Zoey's room the other day when I saw it--my mom's old cell phone. After my mom died, Zoey asked to keep the phone because it smelled like Grandma Glitter, cigarettes and perfume. Don't look at it, I said to myself, keep moving. I folded a shirt and then said fuck it, picked up the phone, flipped it open, inhaled deeply. The smell is so faint now. It's been a year and a half and I can hardly smell her anymore.

I tried not to write this because I think sometimes/most times/all the time I am too dark. I'm afraid you will all get annoyed with my bleating. But then I think about my mom's refrigerator, all the stupid quote magnets that clung to it. If you ask me what I came into this life to do, I will tell you: I came to live out loud. This is your world--shape it or someone else will. Be Nice or Leave, Thank You. 

My mom loved David Bowie. And doing things you weren't supposed to do.
When someone you love dies people often tell you that they will live on in your memories, your laugh, in the sound of your whistle and the way you turn your head like she did. And that is true, but so is this: when someone you love dies, they keep dying. Over and over in moments. It's been a year and a half and my mom just died yesterday when I realized she will never get to be a very old woman. What would she look like with hair a puff of white? Would she have still worn eyeliner at 80? (Fabulous, and yes.)

Every now and then Zoey brings her up out of the blue. I miss Grandma Glitter, she says, and before I can cross the room to hug her she is sobbing. I do too, I say, because I don't know what else there is. Sometimes it lasts for an entire evening, Zoey hiccup crying, me trying to cheer her up, divert her attention, wondering if I should cry, should not cry, goddamnit why can't I seem to cry? Ozzy doesn't really understand, and even though whenever we cross the Golden Gate Bridge he brings her up, my mom will never know that Ozzy calls people You Frickle Mickle Pants when he is pissed. She would have loved that. Him. Her. Them at 4 and 9 and then. 

And then there is this. I think I put a pause on grieving my mom while I was being diagnosed, researching treatment, raising the money, going to Tel Aviv, getting chemo. It seems that there is a cap to how many horrible things you can focus on at once so I did not think of her much at all. Now that I am hopefully fingers crossed on the other side of something, there she is again. Dying again. Still dead. Each time like the first time when they told me she was gone. 

Maybe this is how it is, how it always will be. A constant shock that I can't call her, hear the soft crackling inhale as she smokes while talking to me on the phone, how we would have talked about how proud we both are of Bruce Jenner, how I will never know if she would have liked that book I just read. As I write this I am wearing her old robe, a singed cigarette hole in the wrist of the sleeve that I poke my thumb through sometimes as if we are holding hands, the sharp melted edges her fingernails lightly tracing my skin, though the bathrobe now smells of Tide and my tea.
Zoey teaching Grandma Glitter how to diaper a one day old Ozzy.
xo,
S

p.s. If you haven't read this post written by my mom about the first time she took mushrooms, check it out and you will see why she is so missed.

Monday, May 4, 2015

I'm Leaking (Are You?)

Question (a serious one): how do you trust your gut if you're pretty sure you have a "leaky gut" and probably shouldn't listen to a thing it says?
Because--you guessed it--I am pretty sure I have a "leaky gut." And no, it is never good to think you have a malady that you can't write, let alone say out loud without using douche quotes. "Leaky gut." The very phrase sounds made up. Like maybe I have Dropsy or Lockjaw. I am not sure what either of those things are except I know they are real, and growing up I was irrationally afraid of Lockjaw ever since I read a book about a girl who had it. Something about a rusty metal bed and how she couldn't move, but when I Googled "lockjaw girl rusty metal bed" a bunch of porn came up, so no. That's not the Lockjaw I read about when I was little.
Anyhoo. If you haven't already heard, "leaky gut" is the new black. As in everything from fatigue to depression and anxiety to autoimmune diseases may be connected to the intestinal wall. In particular to my own health, researchers are studying the connection between inflammation in the gut to progression of MS. I'm telling you, everywhere I look these days I see headlines of mucous membranes and body cavities. While part of me just wants to change my reading material, another part of me likes to be trendy. So if my possibly floppy, loose intestinal wall being too permeable is suddenly 'in,' I will totally leak my gut right down the runway. I mean, I just traveled around the world to reset my immune system. I'm thinking I should maybe go to a holistic nutritionist to run a few tests?

Thoughts? Advice? Over/under on the chances of me ever truly quitting sugar and bread?

In other news (though honestly, I've read so much on "leaky gut" now that I wouldn't be surprised if this was somehow related): I have started wearing ear plugs at night because Bryan snores so freaking loudly that I want to sucker punch him between the hours of 11pm and 6am. Unfortunately, the cats like to play with the foam ear plugs, eat them and then throw them up strategically right were I might step upon first waking, so I have to keep them (the ear plugs, not the cats) locked in my bedside table drawer. Late last night, I was woken up by Ike nibbling gently at my head trying to stealthily steal the plug from right out of my ear. Let me just say that Ike would suck at playing Operation.
Either this has nothing to do with anything and this is a real shit blog post, or it's all connected and we can give this post the holistic stamp of approval. Can you tell which way I'm leaning?

Happy Monday,
S

p.s. There is an even realer possibility that I have used these images before years ago, but I love them, the moment before disaster. Let's pretend it's the first time. For everything. Today.

Thursday, April 30, 2015

#TBT: The She Who Walks Behind The Rows Edition

For all of you sweet people who tell me I look oh-so chic with my verrrrry closely cropped 'do, please know that I thank you, I love you, but I am also in the middle of having flashbacks to 7th, 8th and 9th grade. Anticipating the awk is like waiting for a 3 year old to throw a baseball at you. You can't help but flinch.
I particularly enjoy the middle pic in which I resemble Malachai from Children of the Corn.
But, you know, it's cool. I'm cool. There are flat irons now. Papier Poudres. Products that don't necessarily contain "tiny reflective color crystals" like Pazazz Styling Mousse. I won't use Sun-In or wear turtlenecks, especially not folded over. I'm good. It's all good.
Can't wait.
(But yeah, my eyes are doing that involuntary fluttering shut flinch thing waiting for it to hit.)

xo,
S

Wednesday, April 29, 2015

Double Crowned

Today I want to take Ozzy somewhere, anywhere, to a place where we can throw coins into a fountain. I want to hold my breath and drive him through the rainbow tunnel, look up at the sky at the first star together even though it is only 9 am. I want to wish and have it be heard.

Someone made the observation the other day that Ozzy and I have the same hairline at the nape of the neck, both of us curving to the left. Bryan says I have a category 3 hurricane forming at the top, a category 2 on the other side. He swirls his finger around the impending storms on my head when he passes me in the kitchen. Meanwhile the lady who cuts Ozzy's hair says that if I have another baby it will be a girl, something she can tell based on his double whorled cowlicks, an old wives tale if ever there was one. Moooo, Bryan says, pretending to lick Ozzy's hair. I don't tell the lady we are probably most certainly not having another baby.
Ozzy is having trouble with friends. The boys won't play with me, he says through lips wet with being almost 4. My heart shatters into a thousand splendid pieces. I tell him to ask nicely, to play with the girls, to maybe play whatever they are playing even if it is not a game he wants to play. Play a game you don't want to play? I repeat this in my head and hate myself for saying it, for not knowing how to fix anything.

When I was in Tel Aviv I researched everything about everything, and while talking to a professor in the waiting room about the role of alemtuzumab as a monoclonal antibody directed against the CD52 antigen of lymphocytes, he asked me if I was a nurse. No, I said, wondering why he wouldn't have assumed I was a doctor.

Because this is what I do when I don't know what to do, I Googled it. All of it. What to do when your child is shy. How to help him make friends. How to hold your breath and make a wish, because who hasn't felt invisible at one time or another? I wouldn't want to know somebody like that. There is a shared feeling to being alone, a monoclonal antibody made up of cells cloned by a parent cell. Of course Google has a vast opinion on what I should do, how I should talk to Ozzy. Google even tells me that having a double whorl in your hair is called a Double Crown, a symbol of genius to some, a promise of difficult haircuts and a future of bad hair days to others. I decided not to say anything more for now. Instead I held him tightly, his body a pleasing weight against my shoulder as he leaned against me smelling of shampoo and cereal. Today he took a robot to school for sharing. 

xo,
S