There are a lot of conflicting emotions when you’re waiting for the person you love most in the world to have their brains sliced open. Confidence, of course- we’re seasoned veterans of brain cancer, and this is not exactly new territory for us. But you can’t help but be aware of the doubts that try to sneak in through the cracks in your optimism.
Whole phrases take on new double meanings in these weird weeks when so much is unknown, and so much is so familiar.
“If we keep up this pace, with having brain surgery every eight years, I’ll have to have brain surgery another two times before the girls graduate high school.”
So much unspoken, and so much I can’t even let myself think about.
“Two times doesn’t sound so bad to me,” I answer. Because you know what? It doesn’t.
These doubts, they circle, and it’s hard to pretend they’re not there. It’s hard to pretend they’re completely irrational, they’re illusions brought on by exhaustion and stress and the fact that so much is once again happening to our family all at the same time.
It always happens all at once for us.
Within two weeks, M and I both finished our degree programs, M got a new job, and we had our third child. That’s a year’s worth of major life change, all between the end of May and the middle of June.
We were engaged for fifteen hours before M’s first seizure, and then the CAT scans, and then the surgical consult, and then a long weekend of introducing our parents to each other, and then surgery and a definitive diagnosis.
Our easiest year was M’s unemployment, with newborn twins and no income, with constant MRIs and job interviews that led to worse than nowhere, with my return to college and M’s starting grad school, when we were so tired and so happy that nothing mattered but that we had our little family. We had each other, and it was easy.
Being with M has always been easy. It’s been the easiest relationship of my life, the easiest friendship. It’s been the easiest romance, the easiest partnership. Things have been hard, but it’s never M who’s made it hard. Loving him and being with him, poking fun and him and feeding him, curling into bed next to him and dreaming happy dreams… I’ve never worked at it. I’ve never had to work at it.
It’s like we were born perfectly paired, beshert, as we would say in Yiddish. I don’t know if I believe in soul mates, but I believe in perfectly complimented humans, and that’s us.
We just can’t do anything else right.
M’s finishing up this week at work, and starting his disability leave. He’ll keep studying for his licensing exam, of course, because we’re not going to miss important opportunities just because of some dumb tumor, but we’re trying to cut down the things he has to do to get through the day. He won’t know this until he reads this post, which he dutifully will, before coming home and telling me honestly what he thought of it and whether I could do better work, but I’ve been looking at jobs. Jobs that would take me away from the blog and our home, so he doesn’t have to worry so much about what his disability time will do to our finances. So long as his doctors clear him to drive, I can find something to keep us going while he house-parents on the ebb and flow of chemo. I have every confidence he can do that. He’ll probably even keep the house cleaner than I do, distracting the children with video games instead of art supplies.
But I don’t want him to worry, and I don’t want to worry myself about something as mundane as money, as comforting as it sometimes is to just worry about things normal people worry about. So back to the job hunt I go.
I want to worry about the kids’ teeth, and whether they’ll need braces (probably yes). I want to worry about the ninety year old jerk who dinged our car last night and insisted over and over that he hadn’t done it, as though we weren’t inside the car when his door slammed into us. I want to worry about RH’s physical therapy, and how we’ll continue once she ages out of EI, and whether we need to or not. I want to worry about all our stuff in storage, and how long it’s going to be until we can move and have it back again. I want to worry about my waistline. I truly, genuinely do.
But I can’t. I don’t have it in me to worry about anything much at all, because to worry is to open up the floodgates of what-if and if-then, and I can’t. I just can’t.
Eight years ago, I told M how ridiculously much I loved him. I told him he didn’t have to propose to me on my birthday, but that if he didn’t propose to me before HIS birthday, he could be sure he was getting a ring as a birthday present. I planned to bake him a ring shaped cake, and make him eat the whole damned thing when he said ‘yes,’ and smash it in his face if he said ‘no,’ although in fairness, I didn’t worry for an instant that he actually would decline.
Seven years, ten months, and twenty five days ago, he asked me to marry him, and I said yes. I didn’t worry about anything. It was just so easy.
Seven years, ten months, and twenty days ago, his surgeon told me he had a stage four glioblastoma and eighteen months to live, and not to get my hopes up. And I didn’t worry. I couldn’t worry. Worry wasn’t an option.
Back then, my parents were turning fifty and I was going back to college after a second year of AmeriCorps. Back then, M and I were young and invincible, baby grownups in a world full of real grownups, decorating our apartment with carpet remnants pulled from alleys, experimenting with shared credit cards, walking to and from the ice cream shop at any hour on any day, because it was such a joy to have a place to go at nine o’clock on a freezing night, with our hands wrapped up in each others’.
Seven years, ten months, and twenty days is long enough to change you. We’re parents now, of three children, one definitely too young to understand what we say when we talk about cancer. None of whom have a frame of reference in which they understand it for what it is.
Seven years, ten months, and twenty days of the easiest happiness I could imagine, but the most complex.
The night after M’s surgeon told me not to hope, my father told me how lucky I was. “So many people take what they have for granted, but you and M won’t ever be like that, will you?”
I wish we could be, but my father was right. We don’t. We might take our long years of parental drama and educational drama and employment drama for granted, but this easiness, the simplicity of the way we love, that’s never ignored.
I’m still nervously determined to make him see me as better than I am, as worthy of being loved so well, to the extremes that I make myself better for him. I still make him meals that might as well be hot dogs with the words, “Please keep loving me pretty please,” spelled out in mustard. I still stare at his profile before falling asleep, amazed that anyone so beautiful is permitted to exist, let alone with a sleepy smile on his face that I know is only for me.
And so I can’t worry. Even if for nearly eight years, I have carefully danced around words like, “For the rest of our lives.” Even if during the last ten months, since things started changing, I let myself indulge in fantasies of tragedy, wallow in fears I had the luxury of forgetting how to control. Ten months to taste it, and to understand how little I want that fear in my life.
I am setting my worry aside.
I am living inside the ease of our love.
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