August 20, 2010

The Long Haul

Yesterday was my husband M's birthday.

For most of us, when we get a little older we feel a little defeated.  Like we've lost something.  I don't know how much of that M experiences, because for him each year is, as he puts it, "...a little 'fuck you' to cancer."

M aging makes me think about time.  About how much of it we have, about how fast it goes, about how so much changes while other things stay constant.  About the part of it that's already gone.  A life is, hopefully, a very long time.  So is a marriage.

M found himself in the hospital with brain cancer the day after we got engaged.  We never got to enjoy being giddy and in love and the excitement of GOING TO GET MARRIED.  We went straight from announcing our intention to spending sleepless nights in the hospital, hearing what certainly seemed like the worst news possible.  We altered our plans about when we wanted to have children, partially because of the sense that time was a luxury we couldn't afford.  We learned to function as a unit in what you might describe as a dysfunctional paradigm.  We learned to behave as though each moment were filled with weight and meaning, priceless gems to be treated with care.

And then we sort of forgot about all of that.

M got better.  Unexpectedly, miraculously, essentially completely better.  We learned to ignore the constant fear of seizures, of brain damage, of death.  We started acting in what is most likely a very normal way- taking each other for granted, accepting the status quo of our life and our existence at face value.  Forgetting how precious each moment was.

It's easy to forget.  Living constantly in a state of perfect love and euphoria is nice and all, but it's exhausting.  It keeps you from honoring your commitments, prioritizing your mundane responsibilities instead of your ethereal ones.

When you get married to someone in a state like that, your expectations are a little different from the norm.  I remember one day during his radiation treatments, M told me he had a goal, to have spent more of his life married to me than not.  I cried, because twenty five years was a long time- an inexpressibly long time- and still so painfully short.  The goal wasn't to spend the rest of OUR lives together, it was to have as much time truly together as we had had apart.  We didn't really talk about "forever," we talked about "as long as we can."

And here we are.  We have two children that we absolutely adore.  M has aged another year.  With his particular diagnosis, every year he lives his prognosis improves exponentially.  Every year he lives he has better and better odds to live another one.  In another five, he'll essentially be risk-free of dying from his astrocytoma.  We forget how precious each moment is, because as they become less full of constant threat, they become more simple and ignorable.  Despite how truly amazing they are.

But I can't help myself from maintaining my terror.  I can't help myself from the occasional reminder that I might not have much time with the love of my life, that his children might not have that time with him.  That all of this could just get snatched away.  It's infectious- it spreads.  It keeps me up at night until I'm sure that the doors are locked and the girls are breathing softly in their cribs and that M is snoring with his arm draped over me, and all is well with the world.  It keeps me taking pictures of my husband and my children, not just so that I can remember these fleeting moments but so that my children, if the worst should happen, will know how much their father loved them.

I take silly videos of the girls laughing as they stick their fingers up Daddy's nose, of Daddy feeding them their cereal, of Daddy playing silly games with them.  And inside, my heart is breaking.  Perhaps the most perverse part is that I'm aching not because I'm thinking about what will happen if my husband dies, but because I'm thinking about what will happen if my husband dies.  Who needs to sit around thinking about that?  Who needs that kind of morbidity lurking in their head?

So he's aged again.  In six weeks, his daughters will celebrate their first birthday.  For me, birthdays are now always tainted- they aren't about living, they're about surviving.  My girls surviving their critical first year, my husband surviving his twenty eighth.

And our marriage, in of itself a kind of life, continuing to thrive as well.  Despite the constant stress of having children, of being unemployed, of managing our debts and digging ourselves deeper into those holes, of car crashes and illnesses... we're still married.  We're still stupid in love with each other, and we're still working at it.  At maintaining our marriage despite forgetting constantly how important it is.  How it's the most important thing that either of us has going.

As I've said before, the best advice I got on child-rearing was that the best thing you can do for your children is have a good relationship with their other parent.  I would amend that.  The best thing you can do for yourself is to have a good relationship with your co-parent as well.  You don't need to constantly remind yourself that each day is a precious gift, it's exhausting.  But it is important to maintain honesty.

I don't tell M every day that I am grateful to have another day with him.  I don't know what he'd read into it, and frankly I don't like thinking about what that means.  But I do tell him every day that I love him.

Someday very soon, he'll hear it from the girls as well.  Every day they learn more and more, picking up the basics of words and patterns and games, and before we know it they'll be running after him, giving him hugs and forming permanent, meaningful memories of their own.

And it's not every birthday, but every single day, that's the little "Fuck You" to cancer.


  1. Beautiful post and nice to read the perspective from a survivor's spouse. I will enjoy continuing to read your blog! (love the pics of your beautiful babes).

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