Friday, June 24, 2011

Trying things on

I started this last night, writing through the sound of an oxygen compressor. It was exceptionally hard to concentrate, but I wanted to stay with the thought. Writing remains easier than speaking, in any event. I have, many times, blanked on a word in the middle of what was intended to be a fluently spoken sentence. Not hard words either—last night it was “frozen mac and cheese.” (Incidentally, we had a much better dinner.) 

I’ve had company steadily all week. My friend Kat came from Arizona on Monday night, and stayed until yesterday evening. Another friend came for a morning while she was here. As Kat left, another friend visited before Andee got home. (Heavens to Betsy, why keep to an alias? All of you know who she is.) Andrea and I had about two hours together. She rubbed my back with the goo that Margaret gave me the recipe to, and we talked. (I can’t be left alone longer than a quick errand run, for my physical safety.)

I’ve had lots of people to think and feel things through with. It’s been good for all of us. I said something last night—can’t remember why—about how I wouldn’t do anything differently, over the last three years of my life. I think I’ve lived as openly, as consciously, and with as much intention as I could have. I’ve done a lot of things I’ve loved. But before that? If you ask me for regrets, oh hell yes. I was a scared kid, frightened of everything, decades beyond where fear remotely served me. I didn’t try things, mostly because I think I was afraid of disapproval. When I threw that off—the catalyst was my first diagnosis—my world opened up. I found the call to homeless ministry that I thought I would do for life.

Andrea and I were seminary friends. She is one in the category of friends for life. She was rubbing my back (where the bulk of my large soft-tissue tumors are), and I was, when not completely blissing out into it, talking about call. If I could go back to my normal life, would I pick up the same call again? I know I’d explore hospital chaplaincy on the way. Which would draw me closest? Would I end up engaged in something I’ve never yet imagined? Would I do something completely random, akin to selling lizards on the street?

I still love my homeless guys. So I don’t know. But the point is, if I had time to try other things, what would I do? I don’t have time to pick something and perfect it. I can’t need that, or allow myself even to want it intensely. It won’t be mine. I’m making space, I think, to think of myself as a person who tries things on, even if I spend the bulk of my time on the bed or in the dining room, and never leave the house. There’s no reason I can’t define myself any way I like, even now. And dying is certainly “trying something new.”

I always want to live with intention. For the last three years, I have. I intend to die that way too: not at my own hand, but in the way that brings the most integrity to the openness in which I have wanted to live.

It almost makes me laugh. What would I try, now? A new recipe. And I’m not a cook, but I’ve enjoyed it with friends. The last time we made granola, I read the recipe (which I almost have memorized) to Andee, and she did everything but the mixing and pouring because it hurts her hands. It was fun. I thought, what could I try? My mind brushed over “a new spiritual practice.” But I’m not the “pray in ten minutes a day” kind of person. Writing is the practice I’ve committed to, over the long term of my entire life. I don’t blog daily or weekly, but as long as I’m here, you will know that I am. Sharing myself in this way has become bedrock to me. I’m worried that I may have mets in my upper right arm, because I’m having pain there. I have an appointment for radiation on Tuesday, which if it works as well as on my knee, will control the pain. I want to communicate for as long as “I” can exist here.

I tried daily prayer. I did it for... maybe a month? The length of my brain radiation, and change. Yet I know that God is with me. It would be pretentious to say that my relationship with God is more imaginative than a daily discipline. I get that one has to stick with it to stay close. But rigid disciplines don’t work for me at all, and they never have. (If I could do Eucharist daily, would I? Damn near. But that’s more than praying words; it’s holy food.)

Andee and I love our friends and want the company. But when they leave, we look at each other, sigh, and re-collect ourselves. I realized yesterday, Yervoy is an every-three-week infusion. I could, if I wanted to, get back on the bus. I mentioned that last night, cautioning first that I didn’t want to anyway. She still looked horrified. We had the moment with the ER doc that we needed. We made the choice. Rather, we allowed her eyes to confirm it in our own. We know it was right. I’ve thought, I want time to try things. Am I being asked to try more treatments? Could I do more, if I tried against even this to stay here? But there’s very little doubt in me. I know the answer is, choose a gentle death. Go. You will be embraced, by that which loves you more than you’ve dared to imagine.

For me, my relationship with God has felt like that—not cerebral, but imaginative. My heart has caught on eventually. It’s been alarming to think of that embrace being as emotionally enveloping as it also must be. But I need to stop fighting myself, to turn. My physical breathing is constricted, but I still have the capacity, and workarounds to make it less uncomfortable. It isn’t time to die yet. But it is time, to begin giving over. I am so grateful for the people who walk with me most closely in that, and who teach me that even if I have scary times contemplating all of this, God is already holding me that closely, has always been, and will always be. I’m not going into the arms of a stranger. I’m held in the arms of the one who created me exactly as I am.

Oh, and if you’re on Facebook? Realize, when you tag me, that you’re talking about me in the third person. And if you comment on a tagged post, I will see it. If you know me, then you already know me, and you treat me as a friend. “Hi and I love yous” are more than fine; I love seeing them. If you comment, and you call me “beautiful and tragic,” I am not. I’m a human being learning how to die. I’m putting way more pressure on my housemate than I’d like to. (She has to not only coordinate who comes to visit and when, but get all my daily meds together before she leaves for work—and get up at night when I need to use the bathroom. And yes, she’s even gracious about it at 3 and 4 and 5 a.m.) There is love and courage in us and in our circle. There’s absolutely nothing to romance about it. We’re going about this as best as we possibly can. And we’re very real human beings.

Thank you for the notes and gifts, blog comments and Facebook drive-bys. Know that what is not reciprocated in print, is very much appreciated in our hearts. We’re touched by all you’re doing, and we love all of you.

Shoutout to St. Aidan’s people: I want to make sure the desire came across clearly. Please let D know if you would make the trip to see me—but it was never intended as a group thing. I want you, and we want to invite you—in ones, twos, and at max threes, and not a steady stream. I only asked her to see who would drive the two hours east—it was never intended as a caravan. I remember Rob’s vigil, though I was at the Ranch and didn’t come—and that’s not what I’m asking for; just love when you can give it. I don’t have the endurance for more. Thank you!

35 comments:

suzanne said...

Kirstin,
I am continuing to lift you and Andee up in prayers.

Kay & Sarah said...

Thank you for sharing yourself through your writing. I love the fact that you talk about your relationship with God. It resonates with me deeply. You are touching so many people.

You are loved, you are wonderful and you are here. Prayers continue.

Ann said...

Thanks for writing -- we keep on keeping on.
Not a happy camper about all this though - that's the truth for me. Much love.

Lori K said...

Your post left me feeling very happy; I love "hearing your voice," your writing. Thanks for making the effort despite the pain in your arm.

As for wondering what other paths you may have chosen, that's a pleasant parlor game, but the fact remains that there is only the present. And I think you are intentionally making the most of it.

Fran said...

Thanks for the update. Love and prayers from here and lots of them, for you and for Andee.

Vinegar Martini said...

These words:

"I’m not going into the arms of a stranger. I’m held in the arms of the one who created me exactly as I am."

lifted me and warmed my heart. What a beautiful approach - what a truth! What peace! You amaze and touch me every time I read your words.

Much love and hugs from an internet pal from GA! Wish I was close enough to visit.

kehf said...

I really like your idea of being a person who tries new things. You may not have time left to master anything except how to be open to experience-- which is no bad thing.

I am glad you are still blogging. It is good to hear your voice through the postings.

Grandmère Mimi said...

I send prayers, love, and blessings. I think of you often, Kirstin, and I believe my thinking is praying, even if I'm not thinking prayer words.

Thanks for writing.

Caminante said...

Call this a drive-by since I can't fly-by... love you, love you, love you... and that is both of you. In thought I send you a beautiful blooming peony because they are out now... as well as a fresh raspberry from my garden. <3

Paul said...

You have been trying things on, learning and opening to new experiences throughout the short years I have known you. You have invited us all to keeping opening up with you. Thank you.

Much love to you and Andee.

Nancy Nyberg said...

Thank you, Kirstin. Love always.

Missy Francis said...

Thank you for sharing. Your faith and the courage it gives you... pray for me. I will pray for you. {{{Kirstin}}}

OmPowered said...

Hey lovey...just giving you a cybersqueeze - a gentle one - and wishing I were there to rub your back <3 You know I'm such a collector of quotes and I want you to know that "Now is now..." is on a glorious pink sticky note on my fridge <3 I think of you every time I see it <3 xo ~E

Anonymous said...

Hi Kirstin and Andee... I love your eloquent writing. I see your life and living it to the fullest of your ability as more than daily prayer, it is living with God, not just communicating. Thanks for your continued blessings on all of us. I continue to send my blessings and prayers and love, from your Southern California faith community, St. George's. Much love.... Rose

Harry Allagree said...

You definitely got the hang of it, kid! Just keep being who you are. Know that you & Andee are close in prayer. Peace, Harry

Kirkepiscatoid said...

Were your ears burning? Someone else in Kirksville asked me about you today. I am beginning to think you have half the town, half a continent away, captivated. Much love. Prayers continue.

Bishop Laura said...

Thank you so much for continuing to share yourself with us. Praying and grateful.

themethatisme said...

Continued prayers and blessings. You sure are not tragic but inspirational. I hope you will not mind a reference in my sermon tomorrow.

holyfoolishness said...

Hi - Thank you for your beautiful writing. Please pass this resource along to A. http://www.carecalendar.org/

It's a free web calendar to help organize visits, food, etc. I've used it before and it was really helpful.


Blessings
Leigh

Anonymous said...

Love and prayers, beautiful Kirstin. Tragic? You? As if!
Thank you so much for this your new ministry in writing.
Ruth

Melissa said...

Thank you for sharing your blog with me. You are a gifted writer and it is an honor to have a glimpse into your life before I had the opportunity to meet you. Never before have I seen such an bright spirit in my daily work. I never say "God bless you" to anyone, but I did to you...and now I know why - you are truly blessed. Those words were meant for you. Warm wishes to you and Andrea.

M.Jones

jw said...

JOY! Sheer JOY and a flood of tears of Joy reading your blog today. I’m a human being learning how to die.-- Archbishop Anthony Bloom and indeed, Bonhoeffer say that THAT is truly living! I am trying to learn the same lesson, at least I want to. And that you share so very very well. All shall be well and all shall be well and ALL MANNER OF THING shall be well my dear dear sister in Christ. You are always in our prayers here... pray for us too...

Magatha said...

"...I was a scared kid, frightened of everything, decades beyond where fear remotely served me...."

See, this resonates so mightily with me, and I'm not free of it. And I'm far from young. "If you don't try, you can't fail" is a terrible way to live. I'm trying so hard to learn from you.

Maybe you have mentioned this on Facebook (I'm not a Facebook person), but your blog is a book waiting to happen. Your writing is important, and your voice is irreplaceable.

Magpie said...

I don't "know" you, but hi, I love you.

Peace. Strength. Grace to you.

Renée said...

Kirstin, I'm so appreciative that you're sharing something so personal with us. To see a journey towards death as peaceful is healing. Your words have encouraged me to think about things I've been avoiding for a long time. I'm just thankful for your words, very thankful. I'm also glad your breathing is more comfortable and I wish I lived close enough to stop by and sit for a while. I hope those backrubs and your favorite treats/foods are bringing you lots of joy!

Anonymous said...

Hi Kirsten,

These are words from the UU hymnal, a song we sang last Sunday. The song made me think of you. The lyrics were written by Samuel Sebastian Wesley, 1810-1876. The tune may be familiar to you by name – it says “Lead Me Lord” in the corner.

Winds be still. Storm clouds pass and silence come.
Peace grace this time with harmony.
Fly, bird of hope, and shine, light of love, and in calm let all find tranquility.

Bird fly high. Lift our gaze toward distant view.
Help us to sense life’s mystery.
Fly high and far, and lead us each to see how we move through the winds of eternity.

Light shine in. Luminate our inward view.
Help us to see with clarity.
Shine bright and true so we may join our songs in new sounds that become full symphony.

Kirsten, Your clarity and grace and bravery luminate the world for me. Thank you so much for all you share in your blog. And Thank You, Andee, for all you do as well. I wish I could be there to help. You are both in my daily prayers and thoughts.
With love and hugs,
Teresa Wood

Anonymous said...

There is an online resource Andee might find helpful in coordinating care and household assistance: www.carecalendar.org
You post tasks that need doing, people sign up, they get email reminders, they can see what's already on your schedule so you won't be overloaded w/ visitors, etc. Hope it helps. Ann Hutcheson

Anonymous said...

Kirsten, Just got back from a car trip through the mountains of Washington state. I was thinking about you the whole time and praying for you. I was trying to humbly experience the beauty on your behalf. Your postings transix me. Sending you lots of love and wonder.

Amy said...

Just cruising by. I don't know you, but that was a lovely post. I pray for you a gentle passing into loving arms when the time is right.

it's margaret said...

God bless you Kirstin. Thank you. And if I were there, I would anoint each part of you, saying, Thank God for your eyes which saw the world in Love; for your ears which heard the Word in Love; for your mouth which spoke truth in Love; for your shoulders which bore the burdens of the unloved for Love's sake; for your hands which worked unhesitatingly in Love; for your feet which walked under bridges and among the poor and suffering in Love; for your heart undone and remade without fear, for Love's sake; in the Name of the One whose Name is unutterable except in Love incarnate... the Name we all share through the imagination and work of the Spirit, in concert with the One who spoke Love in the very beginning...

Amen.

jw said...

"And all shall be well, and all shall be well, and all manner of thing shall be well."

God be with you till we meet again;
By His counsels guide, uphold you,
With His sheep securely fold you;
God be with you till we meet again.

Refrain

Till we meet, till we meet,
Till we meet at Jesus’ feet;
Till we meet, till we meet,
God be with you till we meet again.

God be with you till we meet again;
Neath His wings protecting hide you;
Daily manna still provide you;
God be with you till we meet again.

God be with you till we meet again;
With the oil of joy anoint you;
Sacred ministries appoint you;
God be with you till we meet again.

God be with you till we meet again;
When life’s perils thick confound you;
Put His arms unfailing round you;
God be with you till we meet again.

God be with you till we meet again;
Of His promises remind you;
For life’s upper garner bind you;
God be with you till we meet again.

God be with you till we meet again;
Sicknesses and sorrows taking,
Never leaving or forsaking;
God be with you till we meet again.

God be with you till we meet again;
Keep love’s banner floating o’er you,
Strike death’s threatening wave before you;
God be with you till we meet again.

God be with you till we meet again;
Ended when for you earth’s story,
Israel’s chariot sweep to glory;
God be with you till we meet again.

Paul said...

What Margaret and Joel said, my love.

Heather Melton said...

Kirsten - I just recently saw the blog posts on someone elses facebook page. Please know you are in my prayers. Sorry to have not written sooner or kept up.

Anonymous said...

thank you very much, for sharing this journey so openly. can't think of much to add, to what I've read here -- just to send some good feelings and my hope that peace is with you always. your words have touched my heart as well as my thoughts. <3<3<3

Greywolf the Wanderer, wandering past...

KJ said...

Peace and joy in the journey.