Some day we will all find what we are looking for. Or maybe we won’t. Maybe we will find something much greater than that. – Anonymous
Let the ruins come to life. – Joel Houston
Two and a half years ago, I stared at a computer screen and gripped a scrap piece of paper in my hands.
Should I? Shouldn’t I?
Does it even matter?
I was 31;
three years into my relationship with leukemia,
and not too many more into my relationship with motherhood.
I struggled to juggle
kids who were no longer toddlers, not quite school-aged children,
with a job I mostly loved, sometimes hated.
I’d graduated from one phase of life
– here is where we have children –
to one I never thought I’d see
– here is where we try to keep me alive so I can raise those children.
Somewhere along the way I’d left the decade of endless insecurities – seriously, who really knows who they are in their twenties? – for the decade where my friends told me
it would all come together.
I’d learn to be me.
I’d learn to let go of who they wanted me to be.
I’d learn to be brave.
Should I? Shouldn’t I?
You big baddie.
We are all so scared of you.
You come and invade our families, our friends, our bodies.
You take over and make it all about you.
Even those yet untouched are often barraged by the thought of you;
even some of those you’ve not met are already fighting you,
doing just about anything to make sure that meeting never happens.
They hear you
when they are tempted to eat anything bad,
– which is pretty much everything.
They wonder if they’ll see you
because they’ve sat down to watch a movie
rather than gone to the gym.
They stress about you when they see extra fat in the mirror.
They feel your pulse in grocery stores,
…. beverage stores,
and any time they have an idle moment to think.
We who’ve met you laugh at them. We see them run and remember that we ran too.
Now we just fight you.
Here’s the thing:
You weren’t what I thought.
When I turned 30, I realized the gift you’d given me: while all my friends began to worry about each year that passed and how it might show on their faces, their hips, their waists,
I finally began celebrate the years for the victory marks they were.
Instead of being consumed by the fear that something hard might come along, I’d told myself that I’d already met my hard thing,
the thing that grinds out my rough spots,
makes me less selfish,
and prevents me from becoming Paris Hilton.
I mean, I wasn’t a sucker for punishment or anything.
I didn’t need to go looking for anything else.
But I had this piece of paper.
I had this name
and an email
and a thought
that just maybe there could be more than smiling and surviving.
And so I started to type.
Two weeks later, I held my toddler’s hand as the rain dripped from my coat onto hers.
I raised my hand to knock on a big, beautiful brown door.
I saw it open before I could stamp the water off my boots.
began the conversation that – unknowingly – was about to change my life.
Ten days later, my six-year-old fell apart.
It happened so suddenly, so sullenly.
The world got smaller, more overwhelming, more threatening.
Our family started on a crash course towards
all those things we’d judged other parents for doing,
not the least of which was
Its hard to remember myself then.
What I do remember is that homeschooling was the last thing on my mind that day that I knocked on that door.
In fact, it was on the list of things I said I’d never do.
(Don’t say those kinds of things. You only end up doing them, and feeling like a idiot when you do.)
Who would ever teach their own children?
That’s why we have professionals.
They are the ones who know how to manage thirty children without checking into the psych ward. They are the ones who understand childhood development and fine motor skills and friendly behavior and how to make friends.
Yet three months later, I found myself walking into the same house and greeting a mass of new faces
who probably didn’t know anything about me.
And, really, where did I start?
– Hi, I’m Lana, and I have leukemia?
That’s a conversation stopper if I’ve ever heard one.
I’ve pretty much memorized
the look I know I will get
every time I mention the C word
in connection with anyone close to me,
Most of the time it comes with a fraction of a retreat,
as if we all can’t help ourselves
but think that
hardship might be contagious
those who suffer might dampen our otherwise sunny outlook.
Here’s a hint:
At least, the ones who’ve suffered long enough and hard enough won’t.
They know what those who’ve suffered only lightly haven’t figured out yet:
it doesn’t have to take you over.
It doesn’t have to make you sad.
It doesn’t have to shut the door on
or the inexplicable spring of hope.
Sometimes the end of ease is the beginning of everything else.
Because every so often,
when I’m brave enough to say that C word,
instead of a flinch I see
eyes of recognition,
and grace –
Eyes that have looked the beast in the face
stared him down,
not let him win,
not let him get inside,
even though, quite literally, he might be inside.
I’ve seen these eyes in anyone who’s survived the extraordinary,
in anyone who’s lived to say,
I know what it feels like to have a piece of death inside.
But I didn’t let him have all of me.
Life with CML is unpredictable. There is no real prognosis. There are no guarantees.
There is really very little idea of what will come, or when.
And that’s a good thing.
There’s so little to know because there’s so little of us not living.
It wasn’t always like this.
Twenty years ago, people with CML could choose between two options:
1) a year or so of life on Interferon,
if you call puking your guts out living,
But somewhere in a seemingly boring genetics lab,
a young man too busy for anything but the
compulsion to give his patients
a better prognosis than certain death
on the drug he thought might shut the whole thing down.
When it was ready,
they called it Gleevec.
My then-fiance emailed me the press release from the university he was working at the summer the trials finished.
They might have found a wonder drug for leukemia, he said.
– Oh interesting, I thought, images of bald, white, lifeless bodies flooding my brain.
I shook them out – too morbid, really – and quickly changed the subject:
– How’s the rest of your week? I wrote back.
some thirteen years later,
I’ve read as much as I can about this first generation of the drug that changed everything
for the first time they’d figured out exactly what was wrong with these people
(people like me)
and they’d found a way that might
Last month, one of my closest friends ran a half marathon.
She finished in less time than it takes me to watch a movie.
(Yeah. I know.).
When I congratulated her, she said –
you could do it with me next year.
I laughed in her face.
I mean, we call this woman
And… I’m not a runner.
Don’t be silly, she said. You could for sure do a 5K.
Another woman standing nearby overheard our conversation and volunteered to run with me.
I looked over to her and saw those eyes of recognition.
So we both looked back at The Gazelle and said,
Sure, why not?
everyone has a reason
for doing the thing
the rest of us think is crazy,
who are really good at that crazy thing.
The next day,
I woke up feeling sick to my stomach.
What have I just gotten myself into?
I opened my closet to find no acceptable pair of shoes with which to even attempt a run.
So I dragged myself to Running Room.
Why are you here? said the nice lady with the green running hat.
I bet she asks that a lot, I thought.
– I got talked into a 5K, I said.
– Please give me shoes that will make it hurt less, I pleaded.
She laughed. Her eyes danced a little bit.
I need to see you walk first, she said.
I strutted around the cozy little store for active people
(people I didn’t feel like I belonged with quite yet)
in my structurally-incorrect flip flops,
then in one pair of shoes,
And then –
What’s going on with your right leg? Running Room Lady asked.
I stopped and screwed up my face.
– It’s fine, I said.
She looked unconvinced.
– I started running to take a break from weight lifting, I said.
Why’s that? she asked.
– I hurt my arm in January, I said.
– Fell down the stairs.
Her eyes slid up to mine.
You hurt anything else in that fall?
My mind flew back to that night. Instinctively I reached back to my right hip, where I can still feel
an indent that came from a bruise;
a bruise that wrapped around the backside of my hip for three months.
I don’t know too many right-handed people with a stronger left leg, she explained.
The leg you should be relying on,
you’re letting be dragged around by the one that doesn’t know how to lead.
Fifteen minutes later I left the store with a fuzzy head and a pair of shoes that made walking feel like bouncing on a pad marsh mellows. And as I stepped from marsh mellow to marsh mellow, the only thing I could think about was how I was walking –
the muscles I used,
the places it hurt.
– I think my right leg might be shorter than my left leg, I told David later that night.
Maybe you need to go back to the RMT, he suggested.
– Maybe, I admitted. But maybe –
What? he asked.
I woke up the next day after my post-night-shift-nap, and –
having told too many people I was running to back out now –
I went for a run.
In pouring rain.
In brand new shoes.
And a weak right leg.
And as I ran/walked –
(because, lets face it, people: I have the app. I do what it tells me.)
I realized my right hip hadn’t hurt before this because I hadn’t been using it.
My right shin, on the other hand, hurt like (*#&$@.
I came home, drenched,
and a little bit relieved,
I knew exactly what the problem was:
I’d hurt something so long ago I’d forgotten how to use it.
I’d worked so well around my injury that I’d never have noticed something was wrong
if I hadn’t started running.
I want you to do one-legged squats while looking in a mirror, Running Room lady said. Keep that knee straight over your foot.
I did exactly as she said and nearly fell over.
My right hamstring was a noodle.
– How have I been walking like this for so long? I asked David.
Probably just got used to doing what you needed to do to make sure it didn’t hurt, he said.
It’s been a year of improvements in our house –
and none of them have been exterior.
Our home renovations have been seriously and frustratingly derailed by these things demanding our attention,
things that take over and make over our insides.
It’s so much harder to make yourself over on the inside than on the outside.
So much harder, in fact, its almost impossible. So impossible, its almost as if we need an external force to do it: an intervention of sorts, a friend, a Higher Power, or some kind of
And believe me, I didn’t go looking for these improvements.
They were forced on me by what I like to call relational torture.
We could also call it conflict.
None of it would have happened if not for that knock on the door thirty months ago,
if I hadn’t pushed myself just a little bit to try something that scared me.
And all those scary things really do is expose all our weak bits so we know exactly where the problem is.
as Running Room Lady said,
The antidote to weak muscles isn’t to rely on our strong ones. It’s to lean into the weak ones until they’re strong.
This week I knocked on that same door from two and a half years ago. I was greeted by an easy camaraderie, a developing sisterhood that brings out all my little parts,
especially the bits that need working on.
Once they’re there, I can’t retreat, run, or explain them away.
Because this kind of relationship is just one of many who, in the last two years, saw inside
you can do better.
We know it.
I think of who I was back then. I remember the patterns, the things I said, thought about, did; the things that occupied my time.
I cringe about some of them now.
Every so often I find myself in the same kind of situation, one where Old Lana would say a certain thing or feel a certain thing,
and I almost feel this need to do it the Old Way.
And then I stop.
I’m not Old Lana anymore.
Please hear me on this.
I have a thing. A big thing. A thing that means my life will never be easy. The seed of death is inside me. I will always be climbing uphill. I will always be forced to work hard to be healthy.
Some hear my story and ask me, so where are you at now?
I know the answer they’re looking for.
– I’m not in remission, I say. But I’m okay.
Some people have difficulty with that. But that’s not okay, they say. We’ll pray for you, they say. Why don’t you try a different treatment? they urge.
My answer is almost always the same:
– Because I’m okay with not being okay.
We are all looking for that resurrection moment.
We’re all looking for that moment we can say, glad that’s over. Let’s get back to normal now.
And while I wouldn’t mind that to happen for me, I also know that
our obsessions with endings can leave us discouraged by our middles.
Because while we’re waiting for the hard things to be over,
we sometimes miss the real resurrection moment,
the moment we lean into our weaknesses and realize we don’t mind the stretch.
Because we’ve gotten used to discomfort,
and realized that some of what we thought was broken was really just weak.
Be not afraid of illness.
Sometimes it takes an illness to make us healthy.