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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

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

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.

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

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

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