Friday, January 2, 2015

This Is It.

Go time. Insert sporty pep talk here, whatever, I have never been big on organized sports but yeah. This is it, and I am scared shitless. (Though whoever came up with that lovely idiom doesn't know much about fight or flight, nervous tummy and the ilk.)

By the time you read this I will be on my way to the airport, and for all of my posturing I have to admit I am really fucking scared. I am scared to leave my family. I am scared I will get there and they will find a reason they cannot treat me (it happens). I am scared to feel horribly sick and weak. I am afraid of losing my hair. I am afraid of dying. 
But I am more afraid of having MS.

This whole BALLS thing. Well now I know what it's like to be so afraid that your balls crawl up into your stomach, because damn. I have had butterflies for days now, a constant churning. One night I had a very vivid dream that I was drinking a frappuccino made of cortisol, a whipped blend of stress hormones, and I told myself to remember to look up Cortisoluccino when I woke up to see if it had been trademarked. (It hasn't, and you can have it if you want because it tastes like metal and fear and I doubt there is a market for that.) I am sick with fear. But also MS, so here we go.

If you know me in real life, or not even, if you sent me texts or emails, wrote comments or called, whatever, please pardon the fact that I may not have gotten back to you. I cannot tell you how much I appreciate everything, but I also needed to be quiet these last few weeks, to turn inward, to drink up my family.
These guys, three people who I love more than I ever knew it was possible to love anything. We went to the beach on a day that was sunny and cold and unbelievably beautiful.
 We sat in the sand and breathed in the salt. Some of us ate raw oysters (not me).
(Not him either.)

We hung out with this big guy, an elephant seal who makes me question everything I know about both Darwinism and God. Have you ever heard the gutteral clicking sound they make? It's pure magic and slightly gross.
We also went to the skate park, because that's Zoey's New Year's Resolution, to learn how to skateboard. I love her, this girl who wrote a poem saying she wants to learn to be brave and yet fears nothing.
I watched my kids these past few weeks with shiny eyes, like how you look at a newborn in disbelief and awe, slightly afraid because you just can't believe they are real.
I was a touchy mom these past few weeks, a grabby, talky, kissy mom who blew directly into the open mouth of this guy when his pasta was too hot.
 And this--Bryan. I watched him teach Zoey how to skateboard and he was my 7th grade crush again, always. I could watch him skate forever. Or until he sits down next to me a little sweaty and we hold hands and decide it's time to go home and make hot chocolate.
So that. These photos. For the next 6 weeks I will be posting a lot probably, posting photos of everything that is new to me: a new country, new alphabet, photos of new fruits in the market, a new medical procedure, a new immune system. I will write about it all because I don't know how else to get through it.

I apologize if this post is disjointed and poorly written. It's a reflection of my mind right now, and my mind is extremely disjointed and poorly written.

For now, I leave you with this, something I wish I had written because it is so right, a perfect quote by Cheryl Strayed, from her book Tiny Beautiful Things:

"Nobody will protect your from your suffering. You can't cry it away or eat it away or starve it away or walk it away or punch it away or even therapy it away. It's just there, and you have to survive it. You have to endure it. You have to live through it and love it and move on and be better for it and run as far as you can in the direction of your best and happiest dreams across the bridge that was built by your own desire to heal."


p.s. Here is a photo of the "advent" calendar I made for the kids: 43 cards taped to our chalkboard wall. Each one is sealed up with a love note from me and 2 chocolates. 9 of them have a Treasure Hunt leading them to where I have hidden presents for them around the house. Fingers crossed Ozzy doesn't tear them all off within the first few days...


Jen said...

S, you have a huge support system here rooting for you. Some of us you know in person, and I'm sure most of us you don't, but either way we all care about you and know this will work. I, for one, will be thinking about you every day and can't wait to read whatever you post, poetic or not.

Go kick MS's ass, girlfriend. Muah!

loose id said...

I am amazed and reassured that with all of this love and honesty within you and around you, you are going to be fine. The plain beautiful, healthy, strong, transformed and ever present kind of fine. Thanks for taking us on your journey. xoxo

Annette McCormick said...

Kick ass girl. You are my hero.

Kira said...

I'm so glad to know you in person, Susannah. You don't just have balls, you're a fireball of strength, beauty, and amazing talent. We'll be thinking about you every day. Hope you enjoyed our video. Happy New You!!! xoxo, kira

Nancy Fastenau said...

Susannah, you have all our hearts with you. You will not only persevere but triumph! Can't wait to see you when you get back and help you become even better. Love and kisses.

Anonymous said...

I'm sure you know that there are so many, many of us who are thinking, wishing and praying. You have brought so much to all of us by sharing the ups and downs, the funny and sad, the wondrous and weird, and most of all, your beautiful family. Whether or not you think you are brave, we have read countless examples of your courage through these last few years, and believe 100% in your ability to go over there and kick MS' ass. Wishing you strength for the tough times, patience and stamina to endure, and shared joy for when you WIN!

Sarah Boutin said...

You are so amazing and strong and inspiring, and such an incredible wife and mother. We are all thinking of you and rooting for you back here and know you will beat this thing!

Mr. X said...


"Nothing real can be threatened. Nothing unreal exists. Herein lies the peace of God." --A Course In Miracles

I wish I knew your family in person, because I'd ask Bryan to teach me to skateboard, too. He is awesome.

Sending you lots of love and positive, healing thoughts.


Mr. X

Adam469 said...

No comment... Just a big smile!!! :-D

Anonymous said...

Lovely Susannah, I have never met you in person, but have read your blog for years. I think we e-mailed back and forth once as my family live in Sacramento and we spend lots of time in the Mill Valley area. Anyway, although I am not a religious person, I will be praying hard for you these next few weeks. My daughter is just a bit older than Zoey (and my husband is also a Brian) and though I can't imagine how you will feel leaving your babies behind, you need to fight to get well and be there for them for a long, long time. I read an article this last week that said how effective the stem cell immunotherapy is for MS (it was on google news, maybe you saw it?) Hoping against hope that it works for you. All good wishes to you and your family! --Erin

Cathi said...

Sending you lots of kick ass healing vibes and lots of love, hugs and prayers. I will be thinking of you and your family. You've got this Susannah! xxoo

Robin said...

Susannah, sending you big hugs and hope and love. You will kick MS's ass, I know it.

Molly said...

No words really, just thoughts and strength to you and your family. We'll all be here waiting for you.

Anonymous said...

My favorite card I received when going through my own health hell this summer:

"Good Morning. This is God. I will be handling all of your problems today and I do not need your help... so have a great day.
Love, God."

I wish you peace of mind and strength in resolution and body.

Melisa said...

Oh dear… I tried to leave you a comment twice on--I think it was Christmas eve?--and now I can't seem to find my comments on any of these posts. I thought perhaps moderation was enabled or something. In any event, I checked in today knowing that you leave very soon, to let you know I'm another one over here rooting for you, sending you love and good energy, knowing you can do this. In the event that my comments never made it your way (and even if they did and I'm at risk of sounding INSANE and like a broken record!) -- listen to some Abraham Hicks youtube videos on health and positive energy. Humor me, k? So much love to you, Susannah!! xo

Kelly said...

I don't know what to say that doesn't sound terribly trite and fake. Just know that I've been thinking of you, and will continue to think of you & your wonderful family. I hope this latest comment finds you in good spirits and buoyed by all the love & prayers coming your way.

Anonymous said...

You've got this girl!!!! Postive energy and positive thoughts sent your way. Xoxo

Amy Blakeley said...

S - I feel so honored that you mentioned my Buttons! Buttons! Buttons! boutique in your posts (store coming soon!). All I can say now is holy shit. I'd be surprised it this isn't what you are thinking half the time or more. But BALLS, chica. BALLS! Be strong. 100,000 people behind you supporting your immune system and your belief system. All systems, go.
xx. happy new year. happy new you. braver than brave and holy shit and all that jazz.