Monday, September 21, 2009

Patient Endurance

ka'tie'less, a.  1. Without Katie
ka'tie'less-ness, n.  1. The state of being without Katie.
I've read that cancer patients and their families typically suffer from symptoms of Post Traumatic Stress Disorder, the disorder that plagues rape victims and combat veterans. On many days, I feel as if I suffer from it. I have horrendous flashbacks, bad mental pictures - from the days in the hospital, and on hospice care - that flit onto the screen of my mind, and stick there, randomly. I have to make a conscious effort to come back to, and remain in, the present. If I stay in the flashbacks, I suffer the horrors again; if I leave them, I leave memories of my daughter.

I've been feeling anger in my grieving, lately. Perhaps it's just a phase; I don't know. But I am not someone who is really at ease being angry; I prefer to live with gratitude and love. I think anger, left to grow, becomes toxicity, and I don't want my life and my work to be laced with toxic anger.

"There is nothing that pleases the Lord so much as praise. There is
no test of faith so true as the grace of thanksgiving. Are you
praising God enough? Are you thanking Him for your actual blessings
that are more than can be numbered, and are you daring to praise
Him even for those trials which are but blessings in disguise? Have
you learned to praise Him in advance for the things that have not
yet come?"   - Anonymous

After reading this quote first thing this morning, I confess, I felt angry. Because if this quote suggests that the trial of Katie's illness and death was/is a BLESSING,  NO, thank you!
What would that mean about God?
What would that mean about Katie? Her life is a blessing, but her suffering and death? I don't see it that way. Being Katie-less isn't a blessing, in disguise or otherwise.

As I read further (in a daily devotional), here is what I found:
"These then were Christ's inward virtues: humility, charity, and
patient endurance. These three virtues Christ our Bridegroom
practised during all His life, and He died with them, and paid our
debt according to justice. And of His generosity He has opened His
side. Thence flow forth the rivers of well-being and the sacraments
of bliss. And He has ascended in power, and sits at the right hand
of the Father, and reigns in eternity." - THE ADORNMENT OF THE SPIRITUAL MARRIAGE, by St. John of Rusybroeck (1293-1381)

For sure, I learned more humility on the cancer ward; I had never lived with life-threatening illness, never lived in a hospital, never been a nurse. I was new, I made mistakes, and learned to laugh at myself. Charity was natural, as we love our children deeply. But patient endurance is not something I was taught at home, nor have I observed it being held up as a desirable virtue in our culture. Fixing, changing, improving, earning: yes. Patient endurance? That sounds like failure, like lying down and giving up. But it's not.

I think patient endurance may be the only non-violent way to deal with something like suffering and death from an incurable disease.

Patient endurance is what I saw Katie (and many other kids in the hospital and on caringbridge) exemplify. I also see it in their families.
Patient endurance means entering hell on earth with those you love, so no one has to suffer alone.
Patient endurance means staying when everyone (including you) wants to run away.
Patient endurance means witnessing horrors you wish you'd never seen, and offering comfort and love in the midst of those horrors.
Patient endurance means listening to words that cut your heart.
Patient endurance means feeling fear and facing into it.
Patient endurance means knowing that there is no reasonable hope for the outcome you want, but hoping for the best anyway.
Patient endurance means getting up every morning, no matter how tired you are, to face whatever comes next.
Patient endurance means dealing with what is thrown at you, moment by moment.
Patient endurance means gratitude for the smallest joys.
Patient endurance means looking for the good and the humor in the moment.
Patient endurance means learning to live without what you want.
Patient endurance means learning to live with what you don't want.
Patient endurance would not be possible, for me, without God.

"But He said to me, My grace (My favor and loving-kindness and mercy) is enough for you [sufficient against any danger and enables you to bear the trouble manfully]; for My strength and power are made perfect (fulfilled and completed) and show themselves most effective in [your] weakness. Therefore, I will all the more gladly glory in my weaknesses and infirmities, that the strength and power of Christ (the Messiah) may rest (yes, may pitch a tent over and dwell) upon me!" - 2 Corinthians 12:9 (Amplified Bible)

Put in other words:  " I wouldn't get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations...[and] push me to my knees. No danger then of walking around high and mighty! At first I didn't think of it as a gift, and begged God to remove it. Three times I did that, and then he told me,
'My grace is enough; it's all you need.
My strength comes into its own in your weakness.'
Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift.
 It was a case of Christ's strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become." - 2 Corinthians 12:7-10 (The Message)

I'm not there yet. I am still "focusing on the handicap;" I want my daughter!

I will never believe that it was God's will for Katie to suffer and die. I believe that His will, for all of us, is good, but that - for some mysterious reason - this is a broken and flawed world that we inhabit.
Perhaps, now, patient endurance for me means learning to live with this "thorn," this "weakness," this horrendous, stupendous, enormous loss, this Katieless-ness, with patience, and enduring it with as much grace as possible.

I am thankful that God knows that we need a pattern, and that He has given us Jesus, Mary, Saul (who became the Apostle Paul, and who wrote the letter quoted above), and Abraham, Moses, David and others whose lives can teach us patient endurance (if we are willing to learn). And I pray that this anger will be transformed into loving energy.


Elizabeth said...

What a beautiful post. You ARE patiently enduring. I couldn't possibly write anything in addition to what you've written -- I was struck by your will to resist anger. I imagine you might have to patiently endure feelings of anger as well.

Love and peace to you.

Lakeland Jo said...

What a wonderful post. One thing you have got from this 'patient endurance' process is the ability to support and comfort people with their own challenges, all across the world via cyberspace and locally to you too. I know you are in inspiration to me. I have been through so much myself with my own health and losing my dad (bone cancer) and it is so helpful to see that other people struggle but develop strategies to deal with difficulties encountered. Thanks for sharing these with us and being so open by how you feel about things.
I made the connection a long time ago about ill health that it is all about patient endurance and the lessons that it brings. I am not a patient person by nature, but I have learnt to be more so. Waiting for results, waiting for procedures, waiting for doctors, waiting for opinions, waiting for medication, waiting for operations, waiting for the pain to go,waiting for phone calls, waiting for meals. Sitting with people who are waiting, waiting myself. It has developed compassion and kindness and mellowness. I am much more reflective.
And about anger. My vicar is helpful in this regard. He says God is big enough to deal with our anger,and in fact is probably the only one who is. I don't believe God causes cancer or wants us to suffer, but He can make these experiences rewarding and enriching if we let Him. I would let all that rage and anger out and give it all to Him to take care of.
Big hugs X

Gannet Girl said...

Several months ago my spiritual director suggested that I write down all the things about which I was angry with God.

It took me five minutes to get to number 75.

We have had a difficult week here and I am thoroughly sick of patient endurance. I am sick of thinking that I don't dare to look beyond a day or two ahead, because what's left of my lifetime without my child is not endurable, patiently or otherwise.

I would love one day, even one hour, of full blown joy and exuberance.

You have indeed written a beautiful post.

Karen and Joe said...

Patient endurance is the "muscle" required to walk this road, but mine is sorely undeveloped and poorly coordinated. It is a new process learning to strengthen that one, but it is the only one that will get me where I need to go.
Thank you for that beautiful encouragement.

Heide said...

Thank you for that entry. Made me cry, but it made so much sense. Hugs to you, my friend. <3

m/o ^Jessica^ (Forever 17) & Jake (18)

AJay Piniewski said...

read your blog today on "Patient Endurance". I love your should post it on PAC2 too.

hope you are as well as can be expected

Kay said...

I think one of the verses that has often intrigued me the most is where Jesus learned obedience through the things He suffered. Hebrews 5:8.

We all know that Jesus suffered a great deal and yet we see the end result of His Life here on earth and I have to stop and think about what He's trying to accomplish in me when I am suffering or hurting or struggling. I don't think I'm saying things very well here, but that passage has stuck with me in a strange way and speaks to me at the oddest times.

I understand what you're saying about being without her. And I do struggle with why this nasty thing takes our kids. I know a great deal of it is yes, we do live in a fallen world and the fall has affected everything from our minds to our bodies throughout time.

I have times when certain difficult images run through my head like a movie and I have to make a choice at that moment to stop... just to pray and call out to God for help. I have to realize I am weak and I can't even control my mind and that I need God all the more.

This is a great post... I will be praying for you. Hang in there.

Dawn ~ BJSMomma said...

I love what you posted about patiently true.

Praying for you.


Anonymous said...

Don't really know you, but I follow your blog via my friend Meredith's caringbridge site. I cannot help but be touched and inspired by your eloquent words and your journey. Praying for you right now as you struggle.

Shelly Waltz

Busy Bee Suz said...

A broken and flawed world indeed.
Beautifully written Karen, as always, I learn something new from you.
Take care, Suz

Daisy said...

Karen, I came to know your blog through Gannet Girl's and have read it for some time, now. Mostly I read and I pray as I find that I have no words. Today, I feel led to comment if only to mention how much your words touch my heart.

Such a gracious and honest post.


Anonymous said...

Oh, Karen. I can't bare the thought of surviving my kids, and here you are living it. I wish by some miracle none of this would have happened. Sending you love.

Meg said...

Hi Karen!!

I know I haven't commented in a while (things have been very busy at college!) but I still read your blog and think of your family often. I wanted to share a quote that I absolutely loved from a movie I saw recently. The movie is called "Whatever Works" and it is a Woody Allen film which means it's full of offbeat humor and quirky cynicism.

""Everybody's desperate to have fun trying to celebrate in some pathetic little way. Celebrate what, a step closer to the grave? That's why I can't say enough times, whatever love you can get and give, whatever happiness you can filch or provide, every temporary measure of grace -- whatever works!"

I find it weirdly comforting, and I hope you do too :)


P.S It is great to hear about the all the projects you are working on in Katie's name and memory! I bet she would be really proud of you, and it must feel great to channel your love for her into something tangible that can benefit others!!!

Karla said...


Warrior against Childhood Cancer said...

Thank you for your heartfelt and honest post. There were so many parts of it that I myself could have written word for word. As I am approaching the 2-year "angelvesary" of my precious Bailey, I often feel the same way that you describe. I too agree that my loving God could not have given my daughter this horrible death sentence. God’s love is the only reason that I made it through this ordeal. I believe it is by our choice and God’s strength and grace...sometimes hourly, sometimes daily...that we are able to hold on to the good memories and not sink into the darkness of the bad ones. I also believe that, the fact that there are any good memories from that time, are due to the power and grace of our Lord. I love what you are doing with the quilts in honor of your precious girl. Also, your overall support of the hospital is great! Being a part of Comforting Kids and Bailey’s Treasure Box helps me feel connected to my little Miss Bailey because I know it is something she would love to do. God bless, Kathy said...

So interesting to read this post; I think it's good to give yourself permission to feel angry -- even with God (after all, it's not like if you get angry with him he'll go away!). I suspect that patient endurance may not always be the best thing; that finding ways to let the anger out gives more opportunity for healing.

The problem with anger is that even if you're attempting to smother it in patient endurance it has a way of leaking out; sometimes it's better to just go sit in your car and kick and scream (that's what I used to do); God has a way of being amazingly present when you can find a way to do that safely without hurting yourself or anyone else.

Remember Jesus in the temple: He knew anger, too. maybe it's time to throw over a few tables!

Love you; thanks for walking through all of this so openly. I know we're all walking with you.

AnnDeO said...

I am so amazed and intrigued by your ability to share your truest feelings. I have never lost a child, and I would never presume to know what you are experiencing, but I have wandered the long road of PTSD from a horrific incident when I was younger. You do experience profound grief, anger, sadness, loss and sometimes even pride in yourself for surviving. When I am in my deepest moments a good friend always assures me. You have done this before... you will do it again. and he is right. I am sending prayerful thoughts to you.