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!