Joy, Revisited.

My mom arrives today from New York. She’s getting out right before the big snow storm hits. There are just some times when you just need your mom, and this is one of them.

I met with my oncologist yesterday, and we scheduled my last chemo round. Sometimes I forget what it is I’m actually dealing with, in the day to day struggle and schedule of it all, and then she says something like, “we'll watch for secondary Leukemia.” … Apparently, (only in 1% of patients!), the chemo itself, having done its marvelous job of irradicating your immune system, that trauma to the marrow can itself cause “secondary Leukemia.”

Like I said, sometimes I forget. Which, is important. I can’t think about mortality all the time, but, like the Talmud says, we are not obligated to finish the job, but nor are we free to neglect it. (Paraphrase!). By which I mean, I can’t think about it all the time, but nor am I really free to forget it, and pretend that my life isn’t now scarred with the specter of untimely death. By which I mean, carpe diem. By which I mean, not precisely this diem.

There’s something I realized by getting this awful eye infection. I am alive, but I am not really healthy. I tried to convince my body it was well by running around to IKEA and Target when my cell counts were at their lowest. I tried to pretend that I wasn’t a patient, because it is so hard to simply be a patient all the time. But. In an effort toward acceptance, I am a patient right now. My limitations are limited. My body is not what it was, or, god help me, what it will be.

So, not quite this diem. Or not in the same ways as a "healthy" person.

That said, I’ve been thinking about the Louise Hayes photocopy a friend gave me when I was first diagnosed in September. My friend copied the parts that talk about blood disorders and Leukemia. Louise Hayes apparently works with identifying the underlying spiritual cause of disease. And, although some people interpret this to mean that I’m saying I “caused” my cancer, that’s not what I’m saying. I simply believe that everything is related, and a physical problem is a manifestation of a spiritual one; I just simply do believe that – if there’s something wrong with the roots, there’ll be something wrong with the branches.

Louise Hayes writes that with blood disorders and Leukemia, the underlying issue is the active killing of joy and creativity. If you have any familiarity with me and this blog, you know by now that I have a long history of flash-in-the-pan enthusiasm followed by procrastination, and stagnation. For a long time before I got cancer, I can’t remember the last time I had a good belly laugh, or had joy, or anything like contentment. The truth is, I’m actually quite funny, but you’d never know it over these last few years, it feels like; I haven’t felt that part of me activated or enticed at all. I’ve sort of been a Debby Downer for a long time.

Something I learned at the retreat last month was that Joy is a source of sustenance, not an afterthought, or a reward, but a necessity in and of itself.

So, maybe I don’t know what I want to do with my life, but I do know a few things that bring me joy. I know my mom and I are stupid funny together, and I anticipate that we’ll have some laughs. I know that when I am done being a patient, there are things I want to do (like that flight lesson, Erica!) that will bring me joy.

But, also, in this time of being a patient, how can I do the opposite of “kill joy,” how can I cultivate joy? I made a painting for my friend’s birthday the other day; it’s my first stab at mixed media, and it’s awful, and perfectly where I’m at. I ran into a friend last night who was going to pizza with his kids and some other families and invited me, and I went, even though I felt awkward in the group of adults – but, of course, I got along with the kids.

I want to actively cultivate joy, but within the boundaries of really what I am capable of, and not what I wish I were or used to be capable of. If I want to stay healthy enough to live through this, then I need to be where I’m at, and “bloom where I am planted,” as the saying goes.

I’ll just share this, as it makes me smile. My mom and I have a game we play in department stores that we’ve played for years; it’s called the Ugly Jewelry Contest, and it is simply what it sounds like, we hold up something godawful, and squeal, “I’ve found it! The perfect piece for you!” And we laugh at our wit and good taste. And the simple joy of being silly.