Saturday, July 5, 2008

hard tears

These lazy days between chemo treatments lull me into almost forgetting I have serious, stage four cancer. Sure, there are the obvious reminders, like my cane, like the Hickman catheter that I have to flush and clean every two days, but that's 15 minutes, and then I'm not thinking about it anymore. The summer days drift by, and I'm busy enjoying my boys or sitting on the patio or reading a fascinating book and thinking about how much there is to learn and see in this world, this life. But then it hits me hard, like when Daniel and I are napping on the bed together and he hears a noise and stirs and reaches out and touches my arm and then goes back to sleep, and I see how much my presence comforts him, and I start crying. Or I'm lying in bed with Steve and suddenly the reality of my situation hits me so hard that I start sobbing on his shoulder and punching my fist against his back, almost like I'm having a tantrum, saying, "I don't want to die. I don't want to die. I don't want to go." There's nothing to do but cry, and pray, and then I usually get back to the business of living for each day. But those times haunt me. They haunt me today.

21 comments:

Lollipop Goldstein said...

Emilie--I am so sorry. It truly isn't fair.

Mary DeTurris Poust said...

Emilie,
I am sitting here tonight waiting for my daughter and four of her 7-year-old girlfriends to fall asleep in our sun porch, even though one is hot and one is cold and one is hungry and one wants her mom. They are making me crazy, and I know that my husband and I probably won't sleep a wink during this birthday slumber party. So I came to your blog, as I often do, and am reminded that I should savor these moments, even when they tire me out, because this time will pass too quickly. You inspire me, and you remind me to be grateful for my abundance. Prayers, hugs and blessings.
Mary

Alex said...

Whenever I read about your outlook, I am always amazed with how real you are. Your good and bad timess/worries/moments. You seem so strong, even when you're breaking down...and your family will benefit from your honesty and strength. Your family is beautiful and so are you...and I wish you many long happy years together relaxing on your porch. And one day it will be your grand child napping with you on your bed...reaching out to you for comfort, because Grandma can always help.

Amy said...

Emilie - Its real moment postings like these that I just don't know what to say. My keyboard sits idle trying to find the right words that will help you through a particular moment but I can't seem to find anything appropriate.

I can pray though and I continue to do so each and everyday for you. Last weekend, we attended mass at Notre Dame Cathedral in Paris. You were at the top of my prayer list as the beautiful, angel like music was surrounding us from the choir stalls.

I'll never stop praying...

Enjoy your Sunday paper and coffee on the patio!

Amy

P.S. Your recent Catholic Spirit article was beautifully written.

Mary said...

Emilie, I don't know if this will come out right, but I am going to try. We feel like we are dealing more completely with a situation if we mourn the things that will or will not happen, for ourselves and for others. But is that true?

You can enjoy a nap with Daniel tremendously and it is a great comfort to both of you...until you think about the future that might be, and then you suffer tremendously. I do not know if it has to be this way. That future has yet to be and may never be. We can imagine what it will be like...if you die...if Daniel responds a certain way...how people will handle it...how sad they will be. And as a mom, that must almost feel innate in you to do that, to try to bear that burden and help somehow.

But first, we don't know what will happen. Second, we don't know what it will be like for others. Third, I don't know that God really wants us to take on the burden of the future. What does it accomplish? Do you think he wants that for you, in a moment when you are feeling tired or sick and you can just enjoy someone you love?

This is just something for you to ponder in your process. I am not suggesting a right or wrong. I'm suggesting an option to what feels like the only way to deal. I want you to be able to enjoy a moment with your child as if that moment is all there is. Because in reality, that is all there is at any given time, the moment that we have. The minute we get caught up in grief for the future, we are usually being robbed of that moment that could be such comfort. And if I want that comfort for you, imagine how much more God does.

If we are somehow to help those we love with future grief, it may be by pouring ourselves completely into those moments that we do have, as if we are pouring our spirits into their memories without holding back. That is a difficult challenge, maybe even a burden. It is the challenge to share ourselves, the authentic self that is so much more than this temporary suffering, freely until we are no more.

There is so much love in you. Keep exploring what you want to do with it. You are ALIVE and very present with the ones that you love right now.

hugs....

kristine said...

I am sitting right along Amy here... Every time you are so honest it's seems it is harder to find the right words to say.
All I can ever think is I'm sorry and I wish you didn't have to go through this. You are such a strong woman and I admire you for that..

Coach Megan Thomas said...

Do not go gentle into that good night

"Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light."

--Dylan Thomas

When I am at a loss for my own words, those who spent their lives creating art with theirs seem to serve me...

-Megan

Anonymous said...

When Dad would feel sorry for himself during his four years of IPF, we'd joke with him, "What, do you have a terminal disease or something? Fer cryin' out loud." He used his "I'm dying" excuse with glee-- no, I'm not going to see The Magic Flute again, I'm dying. No, I don't want to go to that party, I'm dying. We'd just roll our eyes and be happy that he was finally speaking up for himself and what he wanted. When his time DID come, and it took a while, remember, we were able to look at his last years, months, weeks, and days and know he was really truly spending time with us because he wanted to, doing things he enjoyed. So use your excuse, if that's what's going to happen (and can't we all say that's what's going to happen?), and just do the things in life you enjoy, like hugging your boys.

I say rage if you want. Garden if you'd rather. Lose yourself in the paper. Engage in a big project. Stare at the sunset. Keep living, friend, and let those tears roll, too. That's part of life and its richness. The support Steve can show you in those times is God working through him.

I've been feeling the need to go to church today, and I wonder if it was because I felt you needed an extra strong prayer. We'll get ourselves over to the Cathedral.

--Laura S.

P.S. Mary, your words were so beautiful. Thank you for a great reminder to live in the present.

Almamay said...

I don't know what to say but I wanted to say something.

Something.

Lots of love coming your way. x

Heidi said...

Wow. Your honesty and openness are so powerful. And I agree that Mary's advice is so true--for all of us, but especially for you.

For what it's worth, I don't think you're dying. You're very much living.

Cathy Boyd said...

I just met you through the Catholic Spirit but I sit here in tears for you. And for all of us who feel the sorrow of death.
Thank you for sharing.

And the children...I know you dont want to leave them. I am a mother too. Dont forget, they have God too. God is there for them too.

God bless you.
CABOYD

Marketing Mama said...

This post reminds me how human you are, Emilie. I'm sorry... and I'm sad for you.

Kristie said...

I so enjoy reading your blog in part because of your honesty. I don't know that I can find any words of comfort or wisdom but do know that I am thinking about you and praying for you.

LutherLiz said...

So many have said such beautiful things here that I wish that I could claim them, but I still find myself wordless at times like these. But know you are in my thoughts and prayers and so many people who don't know you at all ask me often how you are doing and tell me that they are praying, and that gives me hope. You touch so many people.

Jennifer V. said...

Emilie-

Not only is it normal to mourn your unknown, it also is normal to keep moving forward. Cry, yell & SCREAM if you have to. Let out your pain. Yet, at the same time keep moving forward. Enjoy what is here today, what you have now. It is simply amazing what we CAN get through. Our body, mind and soul are incredibly powerful. It's almost like a switch can be turned on and off inside of us. One minute we can be battling the burdens of a beast within ourselves, a few minutes later we are enjoying the sweet smiles of our children, life untouched by the horror of the unknown.

It's all okay.

You have been dealt some really crappy cards of life. They suck. Really they do.

At the very same time, you have been dealt another hand of greatness.
Today... You are alive.
Today... You have an amazing family.
Today... Your husband wants to see your beautiful smile and hold your soft hand.
Today... Your children want to be cuddled by you, they want your your love.
Today... Both your real and cyber friends want to comfort you with words of inspiration.

You are here now. Go outside, sit on your patio and enjoy the warmth of the sun, whilst listening to the giggles of Daniel as he gets chased around by Steve. Listen the the gurgles and coo's of Ben, as he enjoys looking at the wonder of the world around him. Breath. Breath deep. You are here right now. You are alive.

What a beautiful life you have.

You are always in our thoughts and prayers.
Jennifer and family

mo*reezy said...

all these previous commenters have said some amazing things, especially Jennifer V. Thanks for sharing your honest expressions with us!! Praying for you still.

Anonymous said...

Oh Em.

There are so many Hollywood-ish portrayals of death, which often romanticize death to an unnecessary degree. In reality, as you well know, it sucks. It is unfair, even for martyrs who die "for a cause," let alone yourself, and the horrifyingly randomness of the cancer.

I watched a low-budget movie about St. Therese (part of which was filmed at the Cathedral), and she talked in her diary about how gloomy and depressed she felt about her impending death due to TB. I liked that - they didn't try to romanticize it or anything.

- Susanne

Piccinigirl said...

*choking back tears of my own*
all I can do is tell you that I don't want you to go either and that I will pray and hope and send every good thing/thought to you until you beat this.

Kymberli said...

I'm listening. I'm think of you and praying for you. It's just not fair.

luna said...

I came over from mel. just wanted to say I am so sorry. I am thinking of you and sending you strength. I wish life was fair.

Jen J said...

Emilie~

I'm not sure if you remember me or not. I'm actually not sure if we've ever even met. I know who you are from AVENUEs at the Basilica. I have heard about your cancer diagnosis and wanted you to know that you have been in my thoughts & prayers. I pray that you beat this. I pray that you feel the loving comfort of the Saints embracing you. Now that I have found your blog I will continue to follow your story.

May God bless you, Steve & the boys!