What a year really means

It’s been a year and a month since my mom had her stroke. 13 months. That’s one month more than the average lifespan of someone with this type of cancer. And so far we haven’t seen any of the tumors show back up on the MRI, which means they’re still small and slow growing, so we probably have even more time. And that’s great, right? Yes. And no. Just a little bit of no.

Why? Why is there any no?

Because it’s really, really hard. It’s really, really hard, just as hard as it was when she first got sick. It’s hard to carry the fact that my mom is dying. It’s hard to keep have last events – last birthdays, last holidays, bringing extra significance to small events because she might not be around for the next one. It’s hard to see her start to decline – to see her have a harder time talking and walking, to see her getting more and more tired. It’s hard to balance work and family and classes and friends, life in two cities, ridiculous amounts of driving. It’s hard to take care of her, to take her to the bathroom, to make her meals (and to see her eating less and less), to do things around the house that she used to do and that my dad shouldn’t do. It’s hard, and it hasn’t really gotten easier.

It’s just as hard as it was when she first had the stroke. It’s just as tiring and emotionally taxing as it was at the beginning. Sure, I’ve built up my coping mechanisms so I can live a normal-looking life. But really, inside, it’s just as hard as it was before. Maybe even a little harder, because of fatigue.

And I still need help. I still need friends to take initiative with me, to check on me, to support me, because I can’t do this on my own. I still need people to pray, for me, for my mom, for my family. I still need to be received with patience and understanding, because I’m probably going to still act like an idiot, like lunatic, like someone out of control, like someone who is horrible at returning calls and emails. I still need hope. I still need truth. I still need love.

It’s still hard. It’s still tiring. But I guess, when it comes down to it, I wouldn’t trade this time with my mom for anything in the world.

Bullied

Sometimes I feel bullied by the universe.

No matter what I want to happen, no matter what I expect life to be like, I’m overruled by the universe. And recently that overruling hasn’t been full of sunshine and roses. Instead I’ve been overruled by crap, pushed into a corner by shitty situations, silenced by suffering.

I’m being punched in the face by the universe. By the ugly, dark part of the universe. The part that doesn’t want me to ever have a voice, to ever stop feeling like a victim.

So what do I do? How do handle being repeatedly punched and kicked and beaten up for my metaphorical lunch money? (In this metaphor, my lunch money is anything good, and happy, and beautiful. My lunch money is my hope and my joy.)

Well, I sometimes cower in the corner. Though I wish I could say I’m strong enough to stay positive, to not be victimized, to persevere, often times I’m not.

And then sometimes, as I’m cowering in the corner, I remember that I’m not alone. I remember that I’m not even taking the full force of the punches. I remember that Jesus is taking the punches for me, that he’s putting his body between mine and the universe’s fist. I don’t have to be strong, I don’t have to be positive – he’s doing that for me.

And then sometimes, when I remember that (which doesn’t happen very often), I realize that I don’t have to cower in the corner. I don’t have to feel like the victim. I don’t have to give up my lunch money, because I’m not alone, I’m not without protection. And then I realize I can respond to the bullying in a different way – with laughter maybe, without fear, or with confidence that I won’t be completely overpowered.

It’s hard work. It’s hard to re-train myself to not respond in fear. It’s hard to remember that I’m not alone. I still feel the punches, especially when they come as a surprise. Cowering in the corner is still my first response.

But maybe, just maybe, I’ll slowly retrain my reflexes. Maybe someday I’ll skip the cowering and respond instead with confidence and laughter, with my lunch money intact. And it won’t be because I’m strong, and it won’t be because my skin is so thick I can’t feel it. It’ll be because I’m protected by the one who takes on all my pain, my hurt, my mistakes, and carries them himself. It’ll be because I’m not alone.

August 19th

Today is August 19th. A year since my mom’s stroke. That extra year of time that I’ve had with her that I could have so easily not had.

This year has been the hardest year of my life, but also the most beautiful. It’s part of a long goodbye, but it’s also a time to know my mom more deeply. I’ve grown closer to my family, closer to my friends, and closer to Jesus.

And I’ve had a year to be with my mom. To watch Gilmore Girls and So You Think You Can Dance with her. To look through old photo albums with her. To make her scones and pies and other tasty things. To sit with her, to talk with her, to laugh with her, to cry with her. And to tell her, over and over again, that I love her.

So today is a special day, even if it feels ordinary. It marks an epoch in my life, even as I know that this long goodbye isn’t over yet. But I won’t overthink it. Today I’ll just enjoy time with my mother, and tell her I love her again and again.

Let Deep Speak to Deep

“When you ‘love’ someone or ‘miss’ someone, you experience and inner pain. Bit by bit you have to discover the nature of this pain. When your deepest self is connected with the deepest self of another, that person’s absence may be painful, but it will lead you to a profound communion with the person, because loving each other is loving in God. When the place where God dwells in you is intimately connected with the place where God dwells in the other, the absence of the other person is not destructive. On the contrary, it will challenge you to enter more deeply into communion with God, the source of all unity and communion among people.

It is also possible on the other hand that the pain of absence will show you that you are out of touch with your own deeper self. You need the other to experience inner wholeness, to have a sense of well-being. You have become emotionally dependent on the other and sink into depression because of his or her absence. It feels as if the other has taken away a part of you that you cannot live without. Then the pain of absence reveals a certain lack of trust in God’s love. But God is enough for you.

True love between two human beings puts you more in touch with your deepest self. It is a love in God. The pain you experience from the death or absence of the person you love, then, always calls you to a deeper knowledge of God’s love. God’s love is all the love you need, and it reveals to you the love of God in the other. This is deep speaking to deep, a mutuality in the heart of God who embraces both of you.

Death or absence does not end or even diminish the love of God that brought you to the other person. It calls you to take a new step into the mystery of God’s inexhaustible love. This process is painful, very painful, because the other person has become a true revelation of God’s love for you. But the more you are stripped of the God-given support of people, the more you are called to love God for God’s sake. This is an awesome and even dreadful love, but it is the love that offers eternal life.”

              -- Henri Nouwen, The Inner Voice of Love

I barely understand what Henri is saying here, but I know it’s important. So this will be what I rest in, soak in, ponder on for the next few days. Maybe then I’ll know more of who God is, of what God’s love is like, of how my mom is a revelation of God’s love for me.

House of God, Forever

Normally I avoid Psalm 23 – it’s overused, the cliché, God is with me so everything’s peachy psalm. I’m much more a Psalm 22 girl – you know “My God, my God, why have you forsaken me?” and all that. (Though really you can’t have one without the other.)

But Psalm 23 has been speaking to me more recently. Especially the way Jon Foreman wrote it in his song “House of God, Forever”

God is my shepherd
I won’t be wanting
I won’t be wanting
He makes me rest
In fields of green
With quiet streams

Even though I walk
Through the valley
Of death and dying
I will not fear
‘Cause you are with me
You’re always with me.

The shepherd staff
Comforts me
You are my feast
In the presence of enemy
Surely goodness
Will follow me
Follow me
In the house of God, forever.

“Even though I walk through the valley of death and dying” feels so real now, it makes the rest of the psalm feel real too.

Beauty

Some days I feel like doing something really stupid. Really destructive. Something that will dull the anguish my soul feels.

I mean, really, if I’m going to do something stupid, isn’t this the time to do it? Isn’t this kind of grief the kind where people get really drunk, or really high, or hurt themselves? Isn’t this the time people try to anesthetize the pain with stuff like that?

But I haven’t done any of those things. Even though sometimes I’ve really, really wanted to.

What’s kept me from being destructive? What’s kept me from turning to what most people turn to in times like this? Trust me, its not inherent goodness (because I’m not inherently good), or a desire to be perfect (because I don’t to be perfect, its too hard to be). And if you told me it was the grace of Jesus I would probably laugh in your face (my heart hears that more like a pep talk than truth, even though my head knows its part of the answer).

But today the reason I don’t do something destructive is Josh Garrel’s new remix of his song "Processional". Maybe tomorrow it will be the flowers I bought myself at the Farmers Market today. Maybe Monday it will be the sunlight coming in through the big window in my kitchen.

I don’t do something destructive because of one thing: beauty. I don’t want my destruction to cancel out the beauty I see or hear or taste or touch. I want beauty to reign, not the fake beauty we’ve been sold for so long, but true, creative beauty. And though my destructive desires might not be directly aimed at Josh Garrels, or my flowers, or the sun, acts of destruction do something to the fabric of the world, and hurt the beautiful things.

So no destruction for me. No matter how much my inner demons are calling out for something ugly, something stupid. I need to keep going back to beauty, reminding myself what my destruction would really destroy.

Rest

Today I was reading the blog of Phileena Heuertz, and her entry titled “What do you most need right now?” struck me.

The question stuck in my head. What do I most need right now? What, out of everything I could name, do I need most?

The first answer that popped in my head: rest.

I mulled on that for awhile. Was that my answer just because I had a long weekend? A long month? Was it because I was in the middle of my work day, and I was running low on steam (yes, I was reading her blog during work, but luckily its relevant*)? Are there other things that will come to me more slowly that I actually need more?

But no, I’m sticking with my first answer. The thing I need most is rest. Above all the other things I want (my mom to get better, my dad to not be in pain), the thing I need most, and the thing that is the most practical, is rest.

I don’t really know how to rest right now. I tried to rest tonight, but instead I finished Catching Fire for the second time (way too intense to be restful) and painted my nails while watching “Mean Girls” (yah, it also wasn’t restful). I’ve rested recently, when I was in beautiful places like Yosemite, or a hermitage in Big Sur. But that rest was fleeting, and followed by such stress (like my mom going into the ER) that it feels canceled out. 

So how do I rest? How do I rest when I’m always on edge, knowing that things could go south for my mom at any moment? How do I rest when I can’t unplug completely, in case something goes wrong? How do I rest when all I want to do is spend time with my mom?

I really am asking. If you have any ideas, please send them my way.



*Phileena Heuertz, co-director of Word Made Flesh and author of Pilgrimage of a Soul is one of my favorite authors. When I read her book it was a mirror and a comfort to my soul. And she’s going to be the speaker at the InterVarsity Urban Project Consultation this fall, which I’m planning, so I’m going to get to meet her! And that’s how it connects to work, and I why I get to read her blog at my job ;)