Monday, October 04, 2010

sitting up, with helmet

Ken's parents have been keeping me well informed today. He is sitting up, with a helmet on, just in case he wanted to skateboard or something (I give that joke credit to my father in law). He opened one eye half-way. He waved his parents into the room so he could hear them talk. He made noises.

The areas of concern are that he is still not opening his eyes or talking. It was made fairly clear to me today that the fact he can't move his left side is due to the stroke, not to swelling. So it's here to stay. He'll be in rehab for a long while. But the good news is he's young and motivated. That will definitely help him in his recovery.

I look up and see what I wrote and think, "boy, whoever's writing that is calm". I don't feel calm. I feel incredibly angry for Ken, and our sons, and myself. And I feel incredibly lucky that he is still here. I know more certainly now how close he came to dying.

We've been in our house a year now. And I can't help but think back to how different life was last year. How ridiculously lucky I felt, moving into this house I loved. Having this beautiful family. I look at old photos and all I see is that the monster in his head was there the whole time, slowly doing this to him. It was there the first time he held his sons, when we got married, maybe when we met. Then, and I know this is crazy, I get mad at his brain. WHY did it accommodate the damn thing this well? Why not give a little more of a nudge that something wasn't quite right? I mean, really, giving Ken short moments of anxiety /deja vu? Who would've known to do anything about that? Especially because, as all who love him know, he tends toward that anyway.

People keep telling me to try not to think too far ahead. And I know they are right. I need to move with him in his progress. But it's impossible to look at my kids and not see how their world has changed. Impossible not to feel heartbroken for the future that we may not have. Who knows maybe there will be a miracle and he will recover fully? We will adapt to whatever future we have now, with help and love. But I refuse to be stoic about it. I refuse. I rail against it. Against this fight Ken shouldn't have to make. Against the anguish I can only imagine he is feeling. I try not to think about that. What he is thinking and feeling right now. If I thought about it, it would be too much.

I just put the boys down. I was drowsing with Wyatt and heard a noise downstairs, and just thought "oh Ken's cleaning up the kitchen". I've had a couple of those. It's hard being at the house, seeing all of our things. Being reminded of him wherever I look. There's a bag of popcorn on our kitchen counter that we bought at the fair in the morning before we went down to Boston. I can't throw it away. So stupid, but I can't.

It helps to just throw this stuff up and get it out, to know there are witnesses to this despicable thing. See there? Even the word despicable reminds me of him because we saw Despicable Me together. Damn you, Steve Carell!

I just got off the phone with his mother, apparently our boy was thumb wrestling with his father. I bet he kicks my ass when I go back tomorrow. He always does.


  1. I think you said something really important, J, about how there are witnesses to this thing. We witness you, holding so much - home, kids, fear, hope, love, keeping things steady for the kids and for yourself and staying strong for Ken. Everything you say is totally ok with us. It's completely ok to be balls angry at Ken's gray matter, even as you say in the next breath you know it didn't make a decision to pop up now or later. Who cares. It did a bad thing to Ken and to you and we hate it with everything we've got. Keep railing away, J, we witness you. Love, EFS.

  2. Hey Jamie,

    I have in my hands "My Stroke of Insight" by Jill Bolte Taylor, Ph.D. She's a brain scientist who had a stroke. There's a whole section on complete recovery; she says everyone should expect it. Everyone. I've read it twice, loaned it out a couple of times and can fork it over or give you the cliff notes or shut the eff up whenever you'd like. Nothing is fair about what this is putting your family through. But sitting up?! I didn't expect Ken would be able to do THAT so soon as this. I'm glad you'll get to see that for yourself tomorrow. Don't despair, Jamie. I hope he DOES beat you at thumb-wrestling!
    much love, Amy

  3. Hi, Jamie. You haven't met me yet, but you probably know me as Bagley from work. I've been struggling with what to post for a comment. Although I haven't known Ken for too terribly long, I do know this. Ken is one of the most: caring, considerate, intelligent, technically geeky, talented writers (which I am about to classify you among), and all around f'in best people in the world. I am so inspired by your strength. I hope you are inspired and strengthened by the amazing love that surrounds you. I can't help but think back to a day earlier this year when I was telling Ken about a medical concern I had about myself. And although there were a lot of distractions around us, Ken solely focused on me, reached across the table we were sitting at, held my hand, and said, "Jen, everything is going to be okay." And that is what I want to do for Ken. And if I can't each out and touch his sweet hand, then I at least want him to know I am saying it. I can't wait to meet you, Jamie, when we celebrate Ken's recovery. You are a lucky woman to have such an amazing person as Ken in your life and he is clearly as equally lucky to have such an extraordinary wife. Stay strong, Jamie. Love, Jen B.

  4. It's not fair that this is happening...and you have every right to be angry. And I'm glad that you're able to let yourself be angry and know that it's okay. I would be angry fact I am angry. I wouldn't wish an aneurysm on anyone, but it does seem particularly unfair that someone as good and kind as Ken has to go through this. Keep holding on to every little thing that makes you feel grateful and lucky, but embrace the anger too because that keeps you focused on fighting back. We're all here with you...xo

  5. I hope that being honest about your feelings helps you, Jamie. I hope the boys and your families continue to give you strength. And I hope Ken whoops your ass really bad in thumb wrestling.

    Sending love, though we've never met,
    Julie x

  6. Jamie,
    What strikes me is that even in your anger, you are generous. Your anger is for Ken, the boys, the family. It's never the anger of "I didn't sign up for this" and that just shows your strength and love. It's inspiring.

    The fact that Ken can't speak makes me both laugh and cry. How many times has he been in my office explaining something to me and all I could think was "can you either speed up or use less words?". Maybe he's doing this to ensure that we value each and every word he says once the words come back. And maybe that is my selfish way of making this make sense.

    It makes no sense. Don't let him win at thumb wrestling. We don't want him that ego to swell and us to have find a bigger helmet.

    Love to him. Peace to you and the family. JC

  7. Jamie,

    I know this is a very tough time for you and your family. You've certainly had your share. Keep up the fight, stay positive and acknowledge your true feelings.

    We're all praying for you and Ken and the boys. Strong will and hard work are great forces that will get you through this.

    Let your friends and family help you through this, even those you don't know.