Sunday, December 23, 2012

Aches

I’ve started reading a book called Healing After Loss: Daily Meditations for Working Through Grief by Martha Whitmore Hickman. Normally I’m not a fan of prescriptive books on grief – books that tell you how to grieve, when to grieve, and give you the ten easy steps for moving past your grief. So I was skeptical at first when I read the title, but pleasantly surprised when I started reading the meditations: they’re short, direct and full of deep truth. Martha lost her 16-year-old daughter in an accident, and she writes out of her own pain. Every day I get to hear from someone who understands what the death of a loved one feels like, and it’s comforting.

Today she quotes from Caitlin Thomas: “Every bone in my body aches individually with a dragging weariness of pain, and the joints cry aloud for a warm balm.”

The minute before I read this, I was thinking, “I’m really tired. I hope I can just sleep in tomorrow and truly rest.” But Caitlin Thomas says it better: “Every bone in my body aches individually with a dragging weariness of pain…”

Some days it’s easy to forget the ache, the weariness. Some days I’m distracted by work, or moving from one thing on my to do list to another. Some days I’m distracted by hangouts with friends, or all the things I want to make (bread, deodorant, a skirt). But when I really pause, when I really stop, I notice the ache. I feel the weariness.

Martha goes on to quote her son, soon after her daughter died. He said, “It’ll take time, but we’ll feel good again.”

In my head I know this. I know that someday the shadow I’ve been living under, the pain that’s been so constant, will almost disappear. Someday I’ll feel good again.

But I can’t imagine when that day will come. I can’t picture what that day will look like. And in my heart I don’t fully believe its true. I’ve been sitting in this shadow for so long, I’ve been so used to this constant pain that I truly can’t remember what life looked like without it, and I’m a little scared to find out. This ache might not be pleasant, but at least it’s reliable!

And yet I hope. I hope for that balm for my aching joints. I hope that I’ll feel better again. And tonight I hope for the simple (and sometimes not so simple) gift of rest.

Thursday, December 13, 2012

Snow

Each year, I look for new Christmas songs. My favorite of all time is O Come, O Come Emmanuel, but I'm a Christmas music junky, so I've always got to find more.

This year, I found Snow, by Sleeping at Last. 


Snow - Sleeping at Last 
The branches have traded
Their leaves for white sleeves
All warm blooded creatures make ghosts as they breathe
Scarves are wrapped tightly like gifts under trees 
Christmas lights tangle in knots annually
All families huddle closely
Betting warmth against the cold
All the bruises seem to surface
Like mud beneath the snow 
So we sing carols softly
As sweet as we know
A prayer that our burdens will lift as we go
Like young love still waiting under mistletoe
We'll welcome December with tireless hope 
Let our bells keep on ringing
Making angels in the snow
And may the melody disarm us
When the cracks begin to show 
Like the petals in our pockets
May we remember who we are
Unconditionally cared for
By those who share our broken hearts 
The table is set
And all glasses are full
Though pieces go missing
May we still feel whole
We'll build new traditions in place of the old
Cause life without revision will silence our souls

Let the bells keep on ringing
Making angels in the snow
And may the melody surround us
When the cracks begin to show 
Like the petals in our pockets
May we remember who we are
Unconditionally cared for
By those who share our broken hearts 
As gentle as feathers
The snow piles high
Our world gets rewritten and retraced every time
Like fresh plates and clean slates
Our future is white
New Years resolutions are reset tonight

This song is my prayer this Christmas. In the midst of balancing work and play and family and friends, the midst of trying to make this Christmas special and beautiful with my family, in the midst of traveling to a huge conference I'm helping lead the day after Christmas, I need this song. I need these reminders. I need this:

Tireless hope. New traditions. Remembering that we are unconditionally cared for by those who share our broken hearts.



Monday, December 10, 2012

Breathe out

Every two months I hold my breath.

Every two months my mom gets another MRI to find out if the cancer has grown yet. So every two months there’s at least one night I really can’t sleep. One day when I’m either distracting myself with work or so distracted from work it’s amazing I get anything done. One day when I vacillate between wanting to call my dad to get the news and avoiding my phone at all costs.

This month, I got to breathe out a little of that breath I’d been holding. This month my mom’s MRI came back clear, meaning the cancer hasn’t yet grown big enough to show up on the scan. Today I know (as much as anyone can know) that I have another two months with my mom.

Two more months. Two more months to keep laughing with her, telling her I love her, working on a scrapbook with her, sharing meals with her. Two more months where I can go out of town with less of a worry that she won’t be there when I get back. Two more months of plans I can make without having to break them. Two more months of this equilibrium I’ve reached. Two more months without expecting things to fall apart.

Two more months. Another Christmas. Another New Years. Another Valentine’s Day. Maybe even another birthday.

Breathe out, Katye. Two more months.


Two more months of this!

Monday, December 3, 2012

Waves of Grief, Take 2

Sometimes the waves just come. They come in the middle of your first meeting with your new coworkers, as you’re sharing about your lives. They come, unplanned, unexpected, and with such force you can’t breathe. You’re gasping for air, trying to get the words out.

Sometimes they come, and they come less articulately than you planned, with more force, more emotion then you planned. They come, spilling out of you, overwhelming you, and leaving the people around you in stunned silence.

But sometimes as they come, you’re sitting next to a friend who’s been where you’ve been, who knows what it feels like, and who links her arm with yours, holds your hand, leans your head on her shoulder, and breathes for you so you can breathe too.

And then sometimes they just don’t stop. The keep coming, and coming. And they keep coming. You’re on edge, you’re raw, and everything hits the nerve. They come after you talk on the phone with your parents, as you feel that ache of loneliness and homesickness. They come as you wash your face, as you brush your teeth, as you think about the day.

They come, they don’t stop. They come, and you stop trying to hide them, because you know you can’t. They come, and you look like an idiot, and yet, that is your truth. They come, and they show others it okay to cry, it's healthy to mourn, grief doesn’t need to be hidden. They come, and they speak words you can’t express. They come, and they show your vulnerability and trust. They come, and they are your gift, they are what you bring to world. They come, and they speak Jesus out of you.

They come. And you can’t stop them. You can’t stop Him, the Jesus who weeps.

Friday, November 30, 2012

Funny looking

My mom and I have this inside joke of sorts. It goes like this:

One of us says anything that ends in the word “funny”
The other of us says “funny looking – pow!

Example:
Mom (to Katye): “You’re funny!”
Katye: “Funny looking – pow!"
Get it? It’s funny, right?

I can’t claim credit – I learned it from Scrubs (you’ll see it in the first 20 seconds of this video).

 
We love this joke. We use it all the time. And if I start it, she’ll finish it for me (she’s got a mean “pow!” with the finger point action). But today I realized that this joke is going to be really painful when she dies. I probably won’t be able to use it, or even think it, without tearing up (and its not that funny of a joke...).

So I’m going to use it as much as I can while it’s just funny. Watch out world, anytime you say the word “funny” I’ll respond with “funny looking, pow!”

Wednesday, November 28, 2012

Best year of my life


The other day my dad said, “This has been the best year of my life.”

There was probably some context for this, but I can’t remember what it was. And it’s not really that important. Context or not, that sentiment is, to put it mildly, crazy.

It’s crazy that this year of catastrophe and trauma, hospital stays and emergency room visits, suffering, pain, fear, (insert negative emotion here) is the same as my dad’s best year of his life. His most memorable. His happiest. His all around best.

And yet, I feel it too. This year has been the shittiest year of my life (and yes, I know my life is only 26 years long, but I’m pretty much hoping it doesn’t get worse than this), and it’s also been the sweetest. It’s been the busiest, and it’s been the year I’ve been the most present. It’s been the most emotional, and it’s been the most true.

This year, or really year and three-ish months, has been the best year of my life. I’ve spent beautiful times with my family. I’ve felt the love and support of my friends. I’ve learned so much about myself and about Jesus. And I’ve had lots and lots of fun!

So, if my dad’s crazy, I guess I am too.

This has been the best year of my life. And you can quote me on that.

Life in death

I ran from pain. I ran from darkness. I ran from death. I did everything I could to stay happy, to stay healthy, to stay alive. I pinched and squeezed and manipulated the world until it fit my idea of perfection.

But underneath it all lay fear, and grief, and dissatisfaction. All my hidden motivations, my unmet needs, my forgotten hopes were churning, struggling to be heard. They infected my plans for the future, my search for vocation, my pursuit of my true identity.

But in death I have found true life.

In pain, everything has been stripped away. In entering the darkness, the motivations, needs and hopes that had so long been ignored were confronted. In death I have found true life.

It hurts. It hurts to enter into the darkness - whether you choose it, or whether it’s thrust upon you. It’s painful. It’s painful to surrender, to let go of my perfect world and to be in the muck. It’s humbling. It’s humbling to admit that the world I created for myself wasn’t whole, wasn’t real, wasn’t true.

But I have to. I have to surrender. I have to let go. I have admit to the Lord that I can’t do it on my own. I have to ask God “What can you do for me?” Because doing this on my own strength is insufficient. Because it’s too much for me to handle on my own. Because the darkness is too deep without him.

And in surrender there is freedom. Freedom to laugh, to cry, to fail, to grow. Freedom to become my self, my true self – flaws and all, living in a flawed world.

In death, I have found myself. In death, I have found my passions. In death, I have found true life.

Wednesday, October 24, 2012

This too shall be made right

Sometimes I wonder why I’m still following Jesus. Why, with all the crap that my family is going through, do I still choose to believe in an omnipotent God, one who didn’t keep my dad from getting hurt or my mom from getting sick? Why didn’t I just give up? Why didn’t I just turn away?

Maybe, if I had been taught that Jesus cares most about my health and wealth, then I would have turned away. Maybe, if I had been taught that Jesus only cares about the prayer we say, regardless of how we live our lives, I would have given up.

But that’s not the Jesus I know. That’s not the Heavenly Father, the creator of the universe, the all-powerful God that I’ve learned to follow.

The Jesus I know hung out in the church where I grew up, talking and laughing with the homeless and mentally handicapped men and women who came to church mostly for free coffee and a place to sit down.

The Jesus I know spent time in the squatter community in Mexico City where I spent my summers, playing soccer with the kids on the street and working 18-hour days to make ends meet.

The Jesus I know lives in my neighborhood in East Oakland, standing on the street corner with the migrant workers in the daytime, and standing on the street corner with the women at night.

The Jesus I know loves the poor, advocates for the oppressed, cares for the sick, and wraps his arms around the brokenhearted. The Jesus I know intentionally leaves behind the pretty, the perfect, the easy and walks into the ugly, the broken, the hard. The Jesus I know weeps, mourns, screams when he sees his children hurting.

That’s the Jesus that walks with me now. And that’s why I can’t give up, can’t turn away. Because he cares for the sick (my parents). Because he wraps his arms around the brokenhearted (me). Because I see him more here than I ever did when life felt easier.

He’s with me in the darkness. And he knows that the darkness won’t last forever. That someday, this too shall be made right.

Monday, October 15, 2012

Passionate

For my job with InterVarsity’s Urban Projects I recently had to answer the question “What are you passionate about?” This question was a lot harder to answer than I thought it would be. I’ve always been a passionate person, and I can have impassioned arguments about things near to my heart. But recently some of the things I care about have been sidelined as I spend time with my mom. So what am I passionate about? Right now. Not back in college, not when I was teaching, not even when I was in the Servant Partners internship. But what am I passionate about right now?

After mulling (I’m a muller – it always takes me awhile to figure out stuff like this), I came up with two core passions: I’m passionate about helping people live and die with dignity and grace. And I’m passionate about learning and teaching others how to mourn well.

I’m passionate about helping people live and die with dignity and grace. Right now this looks like taking care of my mom, telling her story through this blog. It looks like helping my Spanish-speaking neighbors navigate complicated medical insurance forms that are written in English, or acting as an English-speaking advocate for my apartment complex as we try to get our front gate fixed.

I’m passionate about learning and teaching others how to mourn well. Right now this looks like writing this blog, and kinda just living life.

For me, mourning well right now looks like taking a ballet class. Like doing evening yoga to an Itunes playlist called “Blue,” of some of my more melancholy songs. It means baking my own bread to use for sandwiches, and learning to make my own deodorant and dish soap. It means bawling in my room as I yoga to Billy Joel’s “Lullabye (Good night, my Angel).” It means listening to Bossypants on audio book as I drive back and forth to San Jose. It means rejoicing that my mom’s MRI still isn’t showing visible tumors, and realizing that that means that my mom will be okay through the holidays. It means getting angry that the doctors still can’t figure out why she’s so tired. And it means spending as much time with my mom as I can.

So I guess I am still passionate. For now, the way my passions are being acted on is different than I expected. But I don’t think these passions will go away after this season. I think these are here to stay.

So here’s to learning how to help people live and die with dignity and grace. And here’s to learning how to mourn, and learning how to teach others to mourn well. Here’s to pursuing my passions in all that I do, in every season.

Wednesday, September 19, 2012

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.

Sunday, September 16, 2012

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.

Sunday, August 19, 2012

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.


Wednesday, August 8, 2012

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.

Wednesday, July 25, 2012

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.

Saturday, July 7, 2012

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.

Monday, July 2, 2012

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 ;)

Monday, June 25, 2012

Disability

Good news: my dad was officially granted disability benefits. After seven months of fighting for it, my dad is now covered by… whoever cover disability. No more limbo, no more forms, no more hassle. 10 years of disability coverage, until he retires at the age of 65.

A small miracle, in the midst of so much going on. Thank you Jesus.

Twice in one week

My mom went into the ER twice this past week. In fact, she was in the same room in the ER twice this past week.

She’s fine now, just to calm any fears.

On Tuesday she was sent in to the ER by her doctor, because she was so constipated she was in serious pain whenever she tried to stand. They were afraid it was a bowel obstruction. After a day of tests they decided it wasn’t, that it was just a result of some seriously constipating medication she takes, and she was sent home. She’s fine now, and back to her normal… regularity.

On Sunday she went into the ER because she got so dizzy whenever she tried to sit up that she fell over. My dad thought at first she might be having another stroke, and he couldn’t get her into the wheelchair without her getting dizzy, so the paramedics came. She wasn’t having a stroke, and after an MRI and some other tests, it’s decided that the dizziness was not caused by the cancer, and probably caused by some antibiotics she was taking. She’s fine now, and able to sit up without a problem.

Two ER visits, two sets of good news. So why am I in such a funk? Why is it that I’m scared all the time, worried that my dad’s phone calls will bring bad news? Why is it that my eyes are puffy and won’t stop leaking?

Before this, I was living in this bearable state of equilibrium, of normalcy. Every time people asked how my mom was, I was able to say “the same.” She was the same – speaking a little, walking a little, watching TV. She was in good spirits, she was feeling all right. Normal.

But these ER visits, they feel like they’ve disturbed the sludge at the bottom of what used to be a peaceful pond. Ugly things, scary things that I’ve forgotten over the past few months are rising to the surface, disturbing the placid waters. Fears, worries, tears. Even though everything is okay again, it doesn’t feel normal any more.

These ER visits mean that things aren’t as stable as they looked. I have to be ready for anything, any news.

So here we go, back to living on the edge.

Sunday, June 3, 2012

Cured or Healed?

Sometimes I get really pissed that God hasn’t healed my dad or my mom. I mean, why not? My dad is in constant pain, and my mom is dying. Why can’t the Almighty Healer stretch out his hand and make everything better, everything whole?

And to be honest, I don’t know. I don’t know why some people are healed, why I read all these stories in the Bible about physical healing, and why some people aren’t. Why my parents aren’t.

But lucky for me, Madeleine (yes, in my head, I call Madeleine L’engle by her first name) has some thoughts, and they bring me a little comfort.

“The woman with the issue of blood [Luke 8:40-56] was both cured and healed, and that is easy to understand, but curing and healing are not always the same thing. 
It is always all right to pray for healing. It is also all right to pray for curing, as long as we are willing to accept that this may not be God’s will, and as long as we are willing to accept God’s will rather than our own 
I think God wants us to be whole, too. But maybe sometimes the only way he can make us whole is to teach us things we can learn only by being not whole.” 
            --- Madeleine L’engle, The Irrational Season

As I look at my parents, I do see healing. I see a father who can more deeply care for the sick and the hurting because of his own pain; a father who has to more fully rely on the Lord survive; a father whose ability to preach for the past few years has truly been a gift from God, as all the factors of his disability should have made it impossible. I see a mother whose life-long struggles with depression and anger have been replaced with deep and abiding joy; I see a mother who loves more purely than ever before.

My parents have been healed, but they haven’t been cured. They have been healed, but they haven’t been made whole. And I don’t think this healing could have happened any other way. It doesn’t take away my questions of why they’re not cured now, but it allows me to praise the Lord for their healing.

So sometimes I’ll still be pissed. But at least now I can be pissed with the right vocabulary:
Dear God,
Thank you for healing my parents.
Why haven’t you cured them?
Love, Katye.

The Irrational Season

“This is a strange place
and I would be lost were it not for all the others
who have been here before me.
It is the alien space
of your absence.
It has been called, by some,
the dark night of the soul.
But it is absence of dark as well as light,
an odd emptiness,
the chill of any land without your presence.
And yet, in this Lent of your absence,
I am more certain of your love and comfort
Than when it is I who have withdrawn from you.”
---- Madeleine L’engle, The Irrational Season

Friday, May 18, 2012

Give Away the Pain

Excerpts from a blog by Enuma Okoro:

He asks me if I would really do it? Give away all the pain if I could. 
Would I really give it away? 
'It is so hard. 
So hard... but have this odd feeling... 
I think the pain will matter in the end.  
On the other side of this... things will taste sweeter than they should... because of this bitterness. 
So no.  
I don't want it. But I wouldn't give it away.'

I don't want this pain. But I wouldn't give it away. And all I can hope is that things will taste sweeter than they should because of this bitterness.

Thank you, Enuma, for giving words to my soul.

Sunday, May 13, 2012

Wednesday, May 2, 2012

Angry

Most of the time, I’m pretty angry at God. I yell, I sass, I call out the ruler of the universe for not making things better, not making things right, or at least not making things pretty and simple and perfect like I want them to be. I mean, how am I supposed to trust him, to believe that he’s going to protect me and take care of me, like people always say I should, when I don’t feel like he’s doing much for me and my family right now?

And as I yell at God, at get pissed at trite answers, and wish that God had a physical body so I could kick him in the shins, the only things that give me any bit of comfort are these words that Jesus spoke:

“My soul is overwhelmed with sorrow to the point of death.” (from Matthew 26:38)

“My God, my God, why have you forsaken me?” (from Matthew 27:46)

My souls is overwhelmed with sorrow to the point of death. My God, my God, why have you forsaken me.

I’m not the only one who’s pissed at God. I’m not the only one who feels hopeless, despairing, completely overwhelmed by how hard things are. Jesus, the savior of the world, the only perfect human, the great teacher, the son of God. Even Jesus felt abandoned by God.

If he can do it, I can do it, right?

It doesn’t answer all the questions. It doesn’t magically make me feel less like wailing on the all-knowing and all-powerful king of everything. But it makes me feel less deserted. It makes me feel less alone. And right now, I’ll take what I can get.

Sunday, April 29, 2012

Photo Albums

This afternoon I got to look through some old photo albums with my mom.

I didn’t mean for the albums I picked to be the albums focused on me – I was really looking for pictures of my sister. But I just grabbed the first albums in the box, and mom wanted to look through them anyway. So we sat next to each other, flipping though adorable baby and toddler photos of me.

Adorable pictures like this one :)

Now, I know my mom loves me. But it’s a whole ‘nother thing to see my mom diligently going through the albums – taking time on each picture, cherishing the beautiful moments that were captured on film, pointing out her favorite pictures, talking about how I’m cute in every photo because I’m just so beautiful. What would have just been an ordinary afternoon with my mom turned into something sacred. And thinking back over this afternoon I realize that I’m so lucky to have a mom who loves me so much, and who has gotten to see me grow up from the little girl that I was to the woman I am now. I’m so lucky that I got to sit with her and feel her pleasure and love as she flipped through those album pages. I’m so lucky I happened to pick up the Katye-centered albums, and got to spend an hour looking through them with my mom.

We might not have time for everything we want to do together. And there are some key mother-daughter moments we will never share. But this afternoon of looking through my photos together was one of the most precious moments we’ve had.

Tuesday, April 17, 2012

Finding Joy

Everyone tells me we’re supposed to find joy. Joy in the midst of suffering, joy in every circumstance, or something like that.

But joy, well, joy feels like sunshine and rainbows and puppies. It feels contrived, cheesy and impossible for me right now. It’s probably because of how the word joy has been misused over the years – I’m pretty sure that back in the day, joy was more pure and true than the fleeting and shallow happiness it’s associated with in my head nowadays. But since my understanding of joy is tempered by my context, joy just isn’t gonna happen anytime soon.

So instead I find life. I find the small things that give me life – the short moments that lighten my day, that give my soul rest, that bring peace.

Today life was walking to this little park next to a busy street when I had a break between work and therapy; life was going to that park, sitting in the sun, leaning on a tree, and reading my Madeleine L’Engle book, The Irrational Season, for about 15 minutes. Life was seeing some bright orange poppies on the side of the road. Life was listening to one of my favorite Ben Folds Five live recordings, “The Complete Sessions at West 54th.”

Yesterday life was making hamburgers and staying up late laughing with the interns. Life was getting last, sweet moments with Alex before she heads back to LA for awhile.

Sunday, life was watching the river out in the woods where we had our prayer retreat. Life was praying for the interns, coming back and watching LOTR 3, and eating gifted cupcakes.

Saturday, Friday, Thursday… some days have more life in them then others. But every day, I try to find a little bit of life, a little bit of light to push back against the fog, the darkness that presses in on me. On the days I can’t find life myself, I look to my friends to help bring me life. To sit with me, to make me laugh, to lighten the load just a little.

Maybe someday these life moments will be renamed in my head. Maybe someday I’ll be able to admit that these moments of life are actually little pockets of joy, without feeling like a fraud. But for now the word joy still gets stuck on my tongue. And for now I am content with finding life instead.

Thursday, April 5, 2012

Slipping Away

My mom’s speech is slipping away.

She’s having a harder time speaking – more grasping for words, more frustration when she can’t say what she wants to say, more times when she just can’t finish her sentences because the words just won’t come.

It’s a subtle difference, I guess, unless you’re around her a lot. But I know my dad and I can tell. I know she can tell. She just can’t speak as well as she did before.

The common phrases, the niceties – those have stayed. But she can’t find the words to talk about what the doctor said, or who visited, or who sent her the flowers for her birthday. At least she can still say “I love you.”

We don’t know for sure why her speech is slipping. It might be the chemo (she’s officially getting sick from the chemo. The first month she was really, really tired, this month she had stomach flu-like symptoms). It might be just general tiredness. Or it might be the microtumors that we can’t see on the MRI eating away at the part of her brain that controls her speech.

Whatever the reason, I’m not ready for it. I’ve been really liking this plateau that we’ve been at – this stable place with few surprises. It’s been easier to live life, business as usual (or at least, business as usual since my new usual started in August), without fearing the next traumatic event. It’s been so easy I’d almost forgotten that it’s going to end, that she’s going to eventually going to go downhill, that she’ll slowly go backwards in her progress as the tumors take over.

I don’t know if her speech will improve. I hope it does. But if it doesn’t, I need to start readying myself, whatever that looks like, for what’s coming next. I just wish I knew how to do that.

Tuesday, April 3, 2012

Happy Birthday Mom

Happy 57th Birthday, Mom.

I'm glad I got to spend time with you today, on your birthday. To make you cherry pie (your favorite dessert). To read you my blog entry of why I want to be like you. To share dinner with you, to watch you open your presents, to see how much you loved the collage my sister made you.

Happy Birthday Mom. I love you very, very much.

Friday, March 23, 2012

Sitting

I watched “Lars and the Real Girl” tonight. (It’s one of my favorite movies ever. Seriously, if you haven’t seen it, you should – it’s the most beautiful and genuine movie I’ve ever seen, and it’s just enough off-center for my taste. If I could only watch one movie for the rest of my life, it would be this one.) There’s a scene towards the end of the film when Lars’ girlfriend is really sick, and he comes downstairs to find these three older women he knows from church just sitting and knitting and cross-stitching in the living room.

They offer him food, and they tell him they’ve come to sit with him. One of the women says, “That’s what people do when tragedy strikes. They come over and sit.”

That’s what people do when tragedy strikes. They come over and sit.

I like that. When tragedy strikes, words of comfort mostly sound hollow, distraction can only last for so long, and there’s only so much you can do to make the situation better. But coming over, and sitting – it’s so simple, so unsophisticated, and yet it does more than words or actions really can. Just sitting and being with someone in pain, being present with that person – it’s healing. Just sitting and being, without a need to entertain or be entertained, maybe even with your own version of knitting or cross-stitch – that’s good.

That’s what people do when tragedy strikes. They come over and sit. That’s what I want to do when tragedy strikes. I want to just come over and sit.

Thursday, March 22, 2012

In Memory

Two weeks ago, on Thursday, March 8, my roommate Alex’s mom died.

Her name was Susan. Or Sue.

She died of a vicious type of breast cancer that metastasized – to her brain, to her lungs. She was diagnosed about three years ago.

She tried everything – so many tests and doctors’ visits, tons of chemo. Some of it worked for a little while, but nothing worked completely.

For the past few months things had been getting bad. Thankfully she knew when things were almost at their end, and Alex was able to go home to be with her mom. To say those things that need to be said. To just sit at her bedside and be with her.

I heart breaks with Alex’s. I feel her pain. I grieve with her. I cry for her, for her mom, and for her family. Of course my grief is not the same as hers, my pain is nowhere near as strong as hers, and my tears come less often than hers do. But as much as I can, I mourn with Alex.

And that “as much as I can” is probably more now than it was before my mom’s cancer. I feel Alex’s pain more deeply now because of my own pain. I grieve with Alex more ardently now because of my own grief. I cry more for Alex and her family now because of my own tears.

For awhile I felt guilty about this – about the fact that my own experience with my mom’s cancer and coming death has so impacted my experience with Alex and her mom’s cancer and death. I didn’t want Alex to feel like her grief isn’t unique, or important - because it is. I didn’t want to just be projecting my grief onto hers – because her experience is what should matter now.

But I realized that I can’t separate my experience from Alex’s – they’re too intertwined, too mirrored, too similar, even while being unique. So instead I sit more deeply in her mourning because of my own. Instead I feel the loss of her mother more strongly because of the coming loss of mine. And I know that Alex will do the same when my mom dies.

Sue, I honor your life, your love, and the part of you I know best – being Alex’s mom. And Alex, I sit with you in your grief, and feel your pain with you, as much as I can. I love you so very much.

Monday, March 19, 2012

How's your mom doing?

I haven’t written about this for awhile. The reason? She’s kinda been the same for the past few months.

Her stroke recovery has pretty much plateaued. Her right arm still doesn’t move (and we still call it Fred). Her right leg moves a little, but she can’t feel it. She walks back and forth to the bathroom a few times a day. Her speech is the same – still slurred or mispronounced, she still often can’t find the right word to say something. She still can’t read or write. But overall we get along. We’ve gotten used to narrowing down concepts until we can guess the word she’s thinking of. (It took me about five minutes the other day to figure out she wanted ketchup with her lunch. You know, that red thing you eat.) We’re used to getting her food, taking her to the bathroom, and helping her get dressed. It feels normal now.

She’s done with radiation (and her hair is still mostly gone, though its slowly growing back). She is still doing chemo, in pill form, five days a month, every month. Her first round of monthly chemo made her ridiculously tired, so we waited an extra month between chemo rounds for her to recover.

She just finished her second round, and she’s still a little more tired than usual. We can tell because it’s harder for her to speak, and she has a harder time doing simple things, like standing up to transfer from her chair to the wheelchair. We’re hoping this round is kinder to her though, otherwise we might stop chemo all together so she can have a fuller life in whatever time she has left.

We’ve found our rhythm. It’s nice, to not see a crisis around every corner. Let’s hope things stay that way, at least for a little while longer.

Sunday, March 18, 2012

Role Model

I was watching an episode of Gilmore Girls recently, the one where Rory graduates from high school. (Now that I’ve watched Gilmore Girls with my mom, the show feels like a way to be close to her when I can’t actually be with her. It was a perfect show to bring with me to Madison, WI when I went there this past week.)

This episode has always been a good one, and Rory’s speech at the ceremony has always been poignant. But as I watched it again, one line in particular had more meaning than it ever has before. As Rory is speaking about her mother, she says, “I don’t know if she ever realized that the person I most wanted to be was her.” (Wanna see a clip? It’s about two minutes in on this video.)

I don’t know if my mom realizes that the person I most want to be is her. I don’t know if I realized that the person I most want to be is my mom. But this journey with her, through her stroke and her cancer, has shown me just how much I want to be like her.

Why do I want to be like her?

My mom works through her ish. She started going to therapy when I was in college, and her progression through therapy and into emotional healing inspired mine. She has done the hard work of dealing with her past, and it shows in how she copes, even now.

My mom is a quiet servant, and loved for it. I didn’t know until her stroke how many people she had impacted through serving in a United Methodist Church retreat and ministry program called “Walk to Emmaus.” She got so many cards and gifts and visitors through Emmaus – it blew my mind to see how involved and how loved she was, without me even knowing it.

My mom is patient. In the midst of her stroke symptoms, of not being able to walk, of constantly struggling to find the right word, of being unable to care for herself, she has learned to be patient, to wait, and to have grace for us when we are slow to understand what she needs.

My mom is compassionate. Even in the midst of her own pain, she cares deeply for others – whether its family, friends, or even my friends she barely knows. Instead of wallowing in her own suffering, she sits with others in theirs.

My mom is a fighter. She was a fighter when she had breast cancer 15 years ago, she’s been a fighter with my dad’s disability, and she’s a fighter now. She chose to keep living, she chose to do physical therapy, she chose to do radiation and chemo, and she chooses every day to practice speaking, walking, doing things on her own.

My mom loves Jesus. In everything she’s been through, in all the shit life has thrown at her, she knows beyond a doubt that she is God’s beloved daughter. As she prays, or hums along to worship songs, I see that she is more sure than ever that she is loved by Jesus.

My mom is an amazing woman. And so I echo Rory in saying that the person I most want to be is her.

Friday, March 2, 2012

Voice

I called my parents home phone today, but no one was home. It went to voicemail, and so I waited to hear my dad voice say, “You’ve reached the voicemail of Jim and Susan Crawford,” or something like that.

Instead I heard my mom’s voice.

It’s the first time I’ve heard my mom’s voice, her real voice, her non-stroke voice, in six months.

It wasn’t saying much. Something along the lines of “This is the home of Susan and Jim Crawford, and also Susan Crawford’s Mary Kay business. Please leave a message. Thank you. Bye.”

But it came so unexpectedly, hearing my mom’s voice. It was a shock, a jolt from the past. Her voice now just sounds so different, and is so determined by her stroke, it’s like a whole different person.

A part of me wants to change the message, so people don’t get confused. I don’t want people to think she’s miraculously gotten better, or that she still sells Mary Kay. But a part of me wants to leave it up forever, so I can always call my parent’s phone and hear my mom’s voice, whenever I want.

Requiem

Most of the time I don’t like contemporary Christian music. You know the kind I’m talking about – the upbeat, unwaveringly positive, with a beat that’s stuck in the 80’s kind of music.

I’ve especially been having a hard time with contemporary worship music since my mom’s stroke. I feel fake every time I sing along, with lyrics about the good and the beautiful and the whole – my life just doesn’t feel like that. Where are the songs about how unbalanced and broken life can be? Where are the cries to God for mercy?
“It is a curious fact that the church has, by and large, continued to sing songs of orientation in a world increasingly experienced as disoriented…. It is my judgment that this action of the church is less a defiance guided by faith and founded in the good news, and much more a frightened, numb denial and deception that does not want to acknowledge or experience the disorientation of life.” 
            --- Walter Brueggemann, Spirituality of the Psalms, p. 26 - 27

I can’t deny or deceive myself into thinking that things are all sunshine and rainbows. I can’t pretend that my life isn’t disoriented. I need music, sermons, anything that speaks to a “life that is savagely marked by incoherence, a loss of balance, and unrelieved asymmetry.” (p. 26) I know I’m not the only one who feels it – just read Psalm 130.

My friend suggested I should listen to David Crowder Band’s new album, Give Us Rest or (a requiem mass in C [the happiest of all keys]). (Translation: a mass for the dead.) For the first time in a long time, I feel like singing along to contemporary Christian songs. Or at least I feel like playing it over and over and over again as I soak in the music.

Sunday, February 26, 2012

A paradox

I’ve been told that I wear my heart on my sleeve. And its true – you can read my emotions on my face, I cry easily, I can’t fake disinterest when I feel something deeply. I tried for so long to hide my emotions, but it never really worked, so I’ve accepted my tears and I let them flow freely - they’re a part of who I am and how I express myself.

I’ve also been told that I have a veneer, a mask of sorts that covers up how I’m really feeling. Especially when I need to get something done, or when I am determined to have fun, I can pretend like nothing is wrong. I can sometimes fool people into thinking everything is normal, even when things are falling apart at the seams.

How do I both wear my heart on my sleeve, and have this mask over my emotions? I’m just that talented.

But my real reason for bouncing back and forth between both: it’s the only way I know how to survive.

If I wore my heart on my sleeve all the time, I’d be a mess. I’d probably never leave my bed, I’d watch ridiculous amounts of television, and I wouldn’t be able to function in the world. If I always wore my heart on my sleeve, everything would fall apart.

And if I kept up my veneer, if I wore my mask all the time, I’d be in denial. I’d never process, I’d never deal with my ish, and ten years down the line I’d end up lying on my bed, watching ridiculous amounts of television, unable to function in the world. If I always wore my mask, I’d only be pretending.

So how are you supposed to really know how I’m doing when you see me? Well, you can read my blog – that’s the most honest and vulnerable picture I can give you of myself. Or you could just ask me, I mean really ask me, when you have time and a desire to hear the real answer. I’ll tell you how I’m doing if I can, or we’ll find a mask-free day to check in.

Wednesday, February 22, 2012

Ash Wednesday

Remember you are dust, and to dust you will return

There is something comforting in knowing that today people all around the world heard these words and were marked with an ash cross on their foreheads. There is something beautiful in knowing that all of us are dust, and to dust we will all return.

Remember you are dust, and to dust you will return.

Ash Wednesday marks the beginning of Lent, the season leading up to Easter. Ash Wednesday marks the beginning of a season of mourning, of penance, of prayer. It marks a season of death, of sacrifice, of emptying, to ready us for Easter.

“Yes, Lord, I have to die--with you, through you, and in you--and thus become ready to recognize you when you appear to me in your Resurrection.”
            - Henri Nouwen, A Cry for Mercy: Prayers for the Genesee 

Remember you are dust, and to dust you will return.

We are all mourning in this season. We are all dying, with Jesus, in this season. And that mourning is comforting to me as I mourn. That death is comforting to me as my mom is dying. And that promise of resurrection is comforting to me as I search for hope in all of this.

Remember you are dust, and to dust you will return.

Thursday, February 16, 2012

Something Good

I’m having my own insurance battle right now. First my dad, now me.

Long story short, I had to apply for an individual health insurance plan, and I was denied. It felt horrible – like I’m broken, like I can’t be fixed, like one more thing on top of everything else. (Don’t worry, I’ve worked through those issues in therapy. Yes, I’m broken, but so is everyone else. I can be fixed – I’m improving all the time. And insurance is a ridiculous, oversized, money-driven industry, so I shouldn’t take it personally.)

But the worst thing about being denied insurance is knowing that I have a long, uphill battle in front of me just so I can see a doctor– a battle where I don’t have a plan, or even a weapon. And I just don’t have the energy right now to figure it all out on my own. I was floundering, feeling completely out of my element and without any idea of how this convoluted system works.

And then I talked to Joey. Joey is an insurance broker. And she’s amazing.

Joey is the person that helped my dad work through all of his insurance stuff – she’s paid for by my dad’s work, and it’s her job to know the insurance system and help people get coverage. She knows how to write an appeal, how to word things well in an application, and what insurance plans are the best fit for me. She’s my own personal guide as I fight for health coverage, someone who has learned the ins and outs of the system.

I can’t express to you how wonderful it feels to have her helping me. It’s so comforting to have someone walking through this with me, someone who has so much more experience than I do. It’s so freeing to know I don’t have to find the answers on my own.

I really needed a win today. I really, really needed something good to happen. And it did. Joey did. And now I don’t have to fight this battle on my own.

Monday, February 13, 2012

Sharing

Every time I go to my parents, my mom asks me “How are you doing?”. And most times I give her a pat answer – I tell her I’m fine, I tell her I’m tired, I talk about the traffic getting to San Jose, or I talk about something fun I’ve done in the last week.

But most of the time I’m not actually fine, I’m tired for a lot of reasons, the traffic update isn’t really interesting, and the fun event wasn’t the biggest part of my week.

I’m afraid to tell her how I’m really doing, because most of the time, if I’m not doing well, it’s connected to her. Most of the time I’m worried, or I’m depressed, or I’m overwhelmed because of her stroke, her cancer, and everything connected to all that business. I don’t want to worry her, I don’t want to make her cry, I don’t want to make things harder for her, so I just don’t talk about it.

But then I read this quote:
“I’ve often heard dying people talk about this particular misery that comes from their awareness of the pain they must be causing other people. Experience tells me that it can be alleviated a little if the patient can discuss the onset of death with those around him, and if they can cry together.” Intimate Death, p. 108
Is my desire to protect my mom from pain actually bringing her more misery? Am I causing her more pain by pretending everything is hunky dory?

Maybe. Probably.

Maybe it’s time to tell my mom how I’m really doing. Maybe it’s time to let her be the mom, and me be the daughter. Maybe it’s time to let her protect me, instead of trying to have it be the other way around. Maybe it’s time for us to cry together – we’re both really good at it, so it won’t be a stretch.

I’m scared. But I love her so much, I’ll do anything to make her feel less pain. Even if it means sharing my own pain with her.

Sunday, February 12, 2012

No Shame

When I’m at my parent’s house, I have to help my mom to the bathroom. This means getting her from her chair in the living room to her wheelchair, from her wheelchair to standing in front of the toilet, to holding the bars my dad had installed, to pulling down her pants and underwear, to helping her sit down on the toilet, to waiting for her to go to the bathroom, to helping her stand back up, to pulling up her underwear and pants, to getting her back in the wheelchair, to getting her to the sink so she can wash her hand, and taking her back to the living room to sit back down in her chair.

It’s a little weird. I mean, I’m helping my mom go to the bathroom, helping her do one of the most basic human functions. I sit with her as she poops, and I make sure she doesn’t fall over as she wipes.

And sometimes my mom doesn’t make it to the bathroom in time. Sometimes she wets herself, and I have to help her change into a new pair of underwear and a new pair of pants. My dad recently had to change her sheets because she wet the bed in the middle of the night - she was so deeply asleep that she didn’t even register that she had to go to the bathroom.

Why am I telling you this? It sounds kinda awkward, right? Not a normal topic of conversation. We don’t normally share about bathroom details in polite company (okay, some of my friends do, but it tends to be with a more select group of people… mostly).

But it’s not awkward. When I’m helping my mom, in the moment, it's normal. It’s life. It's what I have to do as her daughter who wants to care for her, even in the uncomfortably intimate moments.

In the book I’m reading, Marie de Hennezel writes:
“Prey to confusion themselves, both children and partners in such situations [cleaning up for someone who is unable to clean themselves] frequently find themselves embarrassed, not to mention somewhat disgusted, with the result that the patient is left alone with a feeling of shame.” Intimate Death, p. 114
It’s normal, it’s not embarrassing, it’s not disgusting because I don’t want my mom to be ashamed. It’s normal, it’s not embarrassing, it’s not disgusting because it’s a part of life. It’s normal, it’s not embarrassing, it’s not disgusting, because I don’t want my mom to ever feel bad about asking me for help.

So now you know. You know the somewhat awkward, somewhat gross, somewhat intimate details of my mom’s bathroom habits. Because she should not feel ashamed or uncomfortable about it, and neither should I.

Thursday, February 9, 2012

Earplugs

I’m afraid to wear earplugs.

I don’t normally wear earplugs, but some nights the ambient noise just keeps me awake (even with my air purifier that acts as a white noise machine). The night my mom had her stroke was one of those nights when I used my earplugs – I can’t remember why. Maybe there was a party going on outside, or there were people hanging out in the living room, or I was just extra restless.

But because of the white noise, and because of the earplugs, and because I had taken a sleeping pill and was deeply asleep, I didn’t hear my phone ring when my dad called in the middle of the night.

So when I woke up at about 5:00 in the morning for no real reason, and saw that I had missed some calls from my dad a few hours before, I knew something was wrong. I went to the living room, listened to the message that my dad had left at about 2:30 in the morning (which basically just said “Katye, call me back”), called him, and heard the news.

And even though I know there was absolutely nothing I could have done in those two and a half hours between the time my dad called and when I got the call, and even though I’m pretty sure nothing drastic is going to happen to my mom right now, I’m afraid to wear earplugs. Afraid I won’t wake up to my phone if it rings in the middle of the night. Afraid that something will happen, and I won’t be able to be there. Afraid, afraid, afraid.

And so I don’t wear earplugs. Even when I’m really tired but restless, and bothered by the slightest noise. Even when earplugs could help me get a full and restful night’s sleep, after some seriously incomplete ones. Even when, by logical thought, I should.

Anyone need some earplugs? I have lots of extras.

Monday, February 6, 2012

Heart

Sometimes my heart just hurts.

There isn’t always a new development or specific reason (other than the general, you know, mom having a stroke and brain cancer thing). Sometimes it’s just painful, and there’s nothing I can do to alleviate the pain.

So I cry, and I sit with Jesus, and I watch TV (I’m really starting to like “Parenthood”). And I try to laugh, and chat, and be okay. And the pain is ignored, for a little while, but it doesn’t go away, not completely, anyway. Because when night comes, and I finally slow down, the pain comes back.

Sometimes my heart just hurts.

Saturday, January 28, 2012

Normal

It’s been more than five months since my mom’s stroke, and I expect to be normal.

I expect to be able to laugh at people’s jokes, have both ridiculous and deep conversations with friends, work efficiently and well, exercise, cook delicious meals, and just generally be at fully capacity. Oh, and I expect to act and interact like I did before all of this – like nothing has changed.

Except so much has. So much has changed.

And underneath the normal that I’m trying to display lies the not normal – the part of me that is still shaken to my core, the part of me that still can’t believe this is happening. The part of me that wants to respond to people’s polite how-are-you-doings with my fears and worries for my family instead of the standard “I’m fine.”

Luckily, I have a blog to get some of that out, so it doesn’t spill onto an innocent checker at Target, or the random neighbor I meet in the elevator.

So how are you doing, Katye?

Well, I’m worried that my dad might still have a hard time getting on disability through our insurance company. Even though the church is all for it, and all his doctors agree that it’s time, the insurance company spent an hour and a half asking him questions about his medical history, and asking him when he’s going to go back to work again (umm, hello, he has a degenerative illness, he’s not going back to work. Read his file already!)

I’m worried because my mom is really tired, more than she was before. It might be the chemo (she’s taking chemo five days out of the month, and they’re giving her a higher dose than before), but it’s making it hard. She can’t even transfer from her chair to the wheelchair in the evenings without my dad almost lifting her, and she has a harder time speaking when she’s tired.

I’m irritated because my mom’s physical therapist said that its alright that my mom is almost falling when she walks (the therapist is trying to change her gait and have her use a cane instead of a walker), as long as there’s someone there to catch her. HOW IS IT OKAY THAT MY MOM HAS NEARLY FALLEN FOUR TIMES IN THE LAST WEEK? I’m all for challenging her, but not when it could severely hurt her.

I’m frustrated because I want to be fully there in my internship, at work, with my family, and with my friends, but I just can’t do it – I just don’t have the emotional and physical energy. I’m frustrated because I’m sick of relying on a sleeping pill to help me fall asleep every night. And I’m frustrated because this blog post is not the well-composed piece of art I expected it to be.

But probably, if you asked me how I was doing in real life, I’d just say I was fine.

Monday, January 23, 2012

Love

This past weekend one of my good friends from college got married. I had the privilege of being in her wedding party, and of promising to support her and her husband in good times and bad.

The ceremony was beautiful, and the vows were profound. She chose to take his sorrows and joys as her own, and hers too became his. They chose to seek Jesus together, in everything they do.

In the beauty and the sacredness of the ceremony, I had one prayer for them – that they would have as strong a love for each other as my parents do. My parents have loved and supported each other for richer and for poorer, in sickness and in health. They have never wavered in their love for one another, even in really painful times. And though I would never wish those painful times on anyone, I pray that if those painful times come for my friend and her husband, she and he would love like my parents love.

Thank you, friends, for letting me share in your special day. May your life together be filled with joy and laughter, and a deep and faithful love.

Thursday, January 19, 2012

Balance

It’s been five months since my mom had her stroke.

It’s been almost two weeks since we found out that my mom has at least another year.

And I’m still re-balancing.

I had found this balance in the way things were before. Well, maybe not balance, but at least I had figured out how to survive. Granted, it was crazy – I was always rushing between Oakland and San Jose and feeling the pressure of time. But I had figured it out – I had a pattern.

But now things are different – good different, but still different. And I’m having to figure out my pattern, my balancing act, all over again.

The first week after we got the good news, I was giddy. I played, I laughed, I spent time with friends, I didn't sit still. I swung back to what things were like before my mom got sick. This past week I was more emo – I cried more, spent lots of time watching television (though of my television watching was with friends – Parks and Recreation marathon two nights in a row for the win!), and ate lots of chocolate. I’ve dipped to both sides of this emotional… teeter-totter (and you thought I was gonna say roller coaster. Gotcha!), and I’ve gotten a little queasy in the process. It’s not comfortable to go from ecstatic to melancholy in such a short time.

I hope I can find my balance point. Or at least make the teeters and totters (wow, weird words) less dramatic. It may not happen for awhile, but at least I have some time to figure it out.

Sunday, January 8, 2012

Phew

On Friday my family and I went to my mom’s radiation follow-up appointment. She got an MRI, and then we met with the nurse practitioner who specializes in my mom’s type of cancer, glioblastoma.

I was really worried about this appointment. This was day we were going to find out what her brain looks like after the radiation and chemo. This was the day we were going to find out how much more time my mom has.

But after all the worry, we got GREAT news.

Her MRI looked as good as it could possibly be. Which means that there was no visible tumor in her brain. (There are still microscopic tumor cells, but no visible tumor is really good.) The nurse practitoner also said that generally it takes 12 to 16 months for the tumor to grow back enough to be visible on an MRI.

Translation: I will most likely (statistically) have another year with my mom. More than another year with my mom, actually.

Best. News. Ever.

A whole nother year. Another birthday, another Christmas. Enough time to finish our scrapbook, and to make one for my sister. Enough time to watch hours and hours of Gilmore Girls (again). Enough time to just be with my mom, be with my whole family. (Okay, yes, even more time would be even better. But at this point, a year or more feels like greatest and most unexpected gift.)

It feels so freeing, like a huge weight has been lifted from my shoulders. Or really from my chest – I can breathe again. It’s the biggest relief to know that I don’t have to rush time with my mom. I feel like I can finally take a breath, and find a better balance between my family in San Jose, my community in Oakland, and my friends everywhere. I’m running a marathon now, not a sprint, and my pace can be so much more sustainable.

And you wanna know what I did to celebrate? I played Just Dance 3 and Fruit Ninja on the Kinect with my friends on Saturday, and went to the beach on Sunday. And my roommate has promised me froyo.

And so I say "phew."

Thursday, January 5, 2012

Books

I’ve started reading and collecting books about death.

That sounds really morbid. Let me explain.

I started reading this book, Intimate Death, by Marie de Hennezel. And it speaks to my soul. Marie worked with people who were dying for years, and her book holds life and death, mourning and hope, in balance. Every time I pick it up, I learn something new about myself. I feel like she knows me, and fully knows what I’m going through.

And so I’m collecting other books written by people who have experienced the death of a loved one. C.S. Lewis’ A Grief Observed, about the death of his wife; Henri Nouwen’s A Sorrow Shared, about the death of his mother; Sheldon Vanauken’s A Severe Mercy, about the death of his wife (which I’ve already read, but may read again); Madeleine L’Engle’s Two-Part Invention, about the life and death of her husband (which I’ve already read, but may read again).

These books aren’t morbid, they aren’t part of some weird fascination on death. But they speak truth about mortality in ways that most books don’t. The speak truth about grief that is glossed over by many.

And more than anything, they show me that I am not alone.

Tuesday, January 3, 2012

Best Doctor Ever

Who knew that a seemingly simple seating choice (like that alliteration? I do!) could so greatly impact the doctor-patient relationship.

When Dr. MacKinnon chose to sit on the edge of my mom’s bed, instead of standing over her, or sitting in a chair apart from her, she made the choice to really know my mom as a person, instead of just a patient. That set the tone for the three weeks that we worked with Dr. MacKinnon while my mom was in rehab.

It wasn’t just sitting on the edge of my mom’s bed that made Dr. MacKinnon a great doctor. But it, along with all the other small things Dr. MacKinnon did, made her one of the most caring doctors I’ve ever met.

She would hold my mom’s hand as she talked to her (this was before my mom could talk back). She would speak my mom as if she was a 56-year-old woman, and not a child (apparently when you can’t speak, people treat you like a child). She would hug my mom before she left the room, and call her by her first name, and share personal details of her own life with us. And one time, out in the hallway, after my dad and I had a conversation with her about my mom’s cancer, she talked with us about each moment being sacred, and gave us hugs as she left.

Dr. MacKinnon valued life, and saw my mom’s life as something beautiful and holy, even while knowing that my mom was dying. She was able to draw near, even though she’d only be our doctor for a few weeks, and even though it might bring her closer to her own mortality as she played a part in my mom’s journey towards death.

I want to be like Dr. MacKinnon – able to live and love in the face of death, granting dignity and grace to people who are helpless, and unafraid to be vulnerable.

Sunday, January 1, 2012

Disneyland


I hate the new Disneyland commercial.

Now, don’t get me wrong. I LOVE Disneyland. 


I mean, seriously. That’s a picture of me and my sister acting like six year olds on the bus from our hotel to Disneyland this past July. If those Minnie ears and our ridiculous faces don’t express love of Disneyland, I don’t know what will.

I love the magic, the artistry, the whimsy of Disneyland. I love that I can act like a little kid, ride amazingly rides, feel tall (since buildings are built at a ¾ scale) and feel like I’m living in a whole different world.

But.

But Disneyland was the last big thing my family and I did together before my mom had her stroke.

And now I see this commercial, with all these happy parents and their kids, with the lyrics “this has gotta be the good life,” and I almost scream. Or throw something at the TV/computer (yah, for awhile it was coming up WAY too often on Hulu).

Who knew that happy families in the happiest place on earth could make me so angry?