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


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


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


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.