5.29.2016

Temporalis

Don't break character
You've got a lot of heart
Is this real or just a dream?
Rise up like the sun
Labor till the work is done

My sweet friend Tim made me a Spotify mix for recovery and the first song is one I'd never heard before, Be Still by The Killers. When I listened to it 3 weeks ago I bawled in the shower and decided I wasn't ready for the rest of the mix. Those lyrics above are from the song and they hit really close to home but are also strengthening. 

During the surgery they detached (and then reattached) my temporalis muscle on the left side of my face. Here are actions that I've learned through real-life experience that the temporalis muscle is involved with:
- yawning
- chewing
- whistling
- licking ice cream (spoon is ok)
- eating tiny things like quinoa
- talking
- opening wide enough to bite a hot dog in a bun

Sometimes if I overuse this muscle I am totally unable to do those things. One night around 3am I couldn't yawn. I kept halving it, unable to complete the yawn because it hurt to stretch. I took IBProfen and 40 minutes later I finally yawned. 

I've had a good stretch of days but last night I suddenly fell apart with my family at my sister's house where we had a little BBQ. It was because I couldn't bite a damn hot dog but (obviously) it was more than that.

It's so hard to pace. It was much easier to lay in bed when my eye was swollen shut and my head bled on the pillow. But as you start feeling better, you kinda forget to rest or to say no or ask for help. Not only was I overwhelmed by being out of the house with the boys and A missing a nap and the rest of it, I was just pissed that this is not over yet. I have been patient and loyal to the recovery cause but it is not my personality to passively wait things out. 

Alas. This is where we are. Ironically the labor The Killers talk about in the song is just the opposite for me- NOT laboring, NOT actively doing things is my labor. The temporalis muscle needs "many weeks" to get back to normal. So I'll watch how much I talk. And chew steak. And yawn.

But I can write. Ain't nothing wrong with my fingers.



5.23.2016

Bears. And tortoises.

I read a book with Noah the other night about a mother and baby bear who are getting ready for hibernation during the winter. Isn't it the most BIZARRE thing to imagine? Going into a cave nest thing for MONTHS without eating or anything but sleeping? (Ok, I think they eat a tiny bit, but still.)

Then I read something about tortoises and had some similar disbelief. Isn't it nuts that a tortoise has his HOUSE attached to himself? He's like an animal RV. The dude can stop at any moment and say "I'm out, heading home" and he's there. 

I don't know why these thoughts came to mind today. Maybe because they're both about sorts of homes and I've spent a lot of time in our house lately. I wouldn't say hibernation is over for me just yet but I'm feeling the first stirrings of feeling ready for the outside world. And as I start exploring that by walking to a coffee shop or sitting on a bench, I also want to retreat into my shell sometimes too. I have a giant scar that goes from one ear to the other. I don't want to scare people or gross them out or to be noticeable at all, but it's alright. It's a transition. 

5.21.2016

Blizzard life

Physical recovery from brain surgery is a lot like watching a blizzard. There's a lot of waiting. If you live where it snows, you know what I mean. When they predict something like 20 inches, you sit back, make some cocoa and maybe read for a few hours under a blanket while listening to the quiet that only exists when snow falls. Because who is going to keep shoveling during a blizzard? Maybe you scrape around every few hours but you're waiting for the worst to be over before you can get to cleaning up.

When you are recovering from brain surgery, a different sort of blizzard happens. I have a box full of cards that I haven't been able to touch. I have gifts and mix CDs and flowers all around the house. I have dreams that showed up along the way, dreams for Plucky and for my family and for me. But I can't deal with any of it right now. I record the gifts on a list, I stack new cards in the box, I write myself emails about the future that I want to manifest. And I exist here, moment by moment, pushing the mental recovery off until I feel like the blizzard is over.

Chris and I have talked about how we can't answer "how are you doing?" I mean, you do. Or you try. But it's impossible to say. Instead we ask each other for a list of feelings you're feeling. That's more clunky but more true. Tired, sad, hopeful, patient, scared, bored of these days. Stuff like that. My NP told me that people my age are hit by the full force of what happened to them about 6 months later. You get back to physical norms 2-3 months in, but mentally it takes time.



Here's my latest picture from 5/19. The black triangle is because there's always something black. Nothing is full of rainbows. But figuring out how to defeat the black? That's what I am always hungry to do. Xo

5.20.2016

A list of things I could do to pay back Jess

In case you have not been following along on FB, my college friend Jess has been getting various heroes of mine to send me SIGNED BOOKS. (Aka Charles Baxter, Dave Eggers, Brene Brown, Krista Tipett). What she must have said and included in her letters to these very famous people, we do not know. (Crack? Snickers? Boxes of Girl Scout Samoas by the dozen?!)

Also her mom just sent me a box of 24 cranes that her Elementary School class made me to get better soon. (WHO ARE THESE KIND PEOPLE.)

So sometimes to make myself laugh I draft a list of payback items. Here are a few:
1. 4 Golden Retriever puppies with red bows (5 seems like too many for a dog walker, so I stopped at 4.)
2. Dozens of boxes of Girl Scout Samoas 
3. A hot air balloon that folds up nicely so she can commute to her job in L.A. without having a bad commute
4. A website from one of my clients that just says JESS [LAST NAME] IS A GREAT FRIEND
5. An oculus rift
6. A museum
7. Meal train for a year 
8. Governor's Island in NYC (they barely do anything with it anyway and I have always wanted to make it a college campus OR buy it and get all my friends to move there and have a weird town of Muhlenberg and Middlebury and Arc90 alumni, among others)
9. A Christmas tree in May, complete with reindeer
10. A baby
11. Buy a box of Lucky Charms, pick all the marshmallows out and put them in a Tupperware and send her the Tupperware 

That's all I got for now. I'll let you know what we come up with xo

5.19.2016

When the going gets tough...

... the tough write new goals:



Sometimes I think about how this might be a very depressing blog to read. I'm sorry about it for a few minutes but then I just think, well, maybe I'm the Dave Bazan of blogs. You don't listen to Bazan (who sings about losing his religion) when you're really in the mood for Katy Perry. So pace yourself; if the things you encounter here on this blog are really heavy for you, skip it for a while. For whatever reason, it really helps me to write here almost daily and often I write what I wouldn't post on FB (aka the darker parts of this journey). Anyway, I just felt like I wanted to give you, the reader, that permission slip.

My rest times aren't as long anymore. Lately I can give myself 20 minutes to close my eyes and I have more energy again. I don't set an alarm or anything, I try to guess when 20 minutes have passed and then open my eyes. It's a very energizing little trick and I wonder if this isn't something I could keep doing after we're back to "normal life." Take 20 minutes and rest your eyes, slow your day down and just rest. Try it if you're having a hard hour or day. It might help!

5.18.2016

To be.

I hit a big wall yesterday afternoon. It's a long story but the end is that I sobbed for a good half hour. I said "I can't do this" over and over a million times and I doubted everyone who has called me brave because the truth is maybe I've just been in naive denial til now. I have no hobbies that are the same, I do not recognize myself in a mirror, I do not feel like the same person. 

Here's a Central Park bench I colored because I needed something real and tangible to swap in: 


Questions I want to ask my surgeon McDermott (whom we affectionately call McDizzle) on June 3 at my check-up:
1. What color was the tumor?
2. Where is the tumor now?
3. What shape did they cut in my skull? A square, I think, but I'm not sure.
4. Will the bumps on my scar fade and smooth out? 
5. Has anyone ever had 2 meningiomas in their life?
6. Do titanium screws affect you at all? 

If I decide to be cremated when I die in 200 years, will the titanium screws be among the ashes? I won't ask him that, too morbid, but I do wonder.

If anyone decides to do Hamlet with my scull one day, it's going to look very modern.

5.16.2016

Walking the line

I got a pedicure today with my friend Melissa and it was awesome to talk about our kids and her and not just how I'm doing. For obvious reasons I feel like I'm the focal point much of the time lately and these bright stage lights are too much some days. It was great to feel NORMAL.

I got a book from Brene Brown in the mail today, which broke and exploded my heart simultaneously. SHE IS SO COOL. So overwhelming! My friend Jess had written to tell her about my journey and she sent a signed book. It was MAGIC.

Last night Chris and I got ice cream and drove around for a while. We talked about life and our future and we pointed out pretty houses in Berkeley. It was NORMAL.

The amount of coincidences showing up right now are MAGIC. Too many to list out.

I find myself unable to read the news at all. It is TOO NORMAL. 

Normal and magic. I'm in the middle now. I'm honestly afraid of when everything gets back to normal because the magic moments have been strengthening, have helped me so much. What happens when normal takes over? What about this new self? How does she fit in with normal? That's what I feel nervous about sometimes.

New pix: