Tuesday, May 25, 2010

on today's edition of "things that have made me cry":

I hope that you know that you have people who love you like this.

Some of them you know about, some are a secret. I don’t wish for you to get cancer, or something else that looks terrible on the outside, so you get to find who your people are, the depth of their affection, love, faith, ability to show up. Miles deep.

But aren’t you curious?

-Molly, "You People Are Amazing"

In another post, she mentioned the MUGA test, which they keep calling her Muggles test :) and the pastor at the UCC church in my hometown commented:
Actually, you do have magical powers: alchemy. You're taking seemingly random and disconnected events and turning them into a parable. Amazingly good news. Keep telling the story.
I was reminded of the definition of Christianity I once heard: "Gather the people, break bread, and tell stories."

Saturday, May 22, 2010

"People they come together / People they fall apart"

So, Molly started a blog for her journey with cancer.

I was really struck by her entry "How You Can Pray for Me."  Excerpt:
So, every cancer patient needs a way of thinking about healing, and curing, their cancer. I read a great book many years ago, Love, Medicine and Miracles, written by a doctor who started a program in the 80s for “Exceptional Cancer Patients.” He found that the patients who were not just ‘positive’ but really had a deep imagination for curing their cancer, had much better outcomes—not all of them lived, but they had less pain, lived a lot longer, and many of them did survive.


For a lot of people, fighting imagery works—they imagine a little shoot-em-up video game inside their bloodstream, their affected organs. I’m so glad this works for them. It’s saved countless lives, given courage and confidence and faith where it was needed most.

But this is not very me. I claim to be a pacifist—well, I’d like to be. My family, on the front lines of my irritation and anger, when I get irritated and angry, know otherwise. But, I can’t personally invest in violent imagery to cure my cancer. I don’t think this cancer is evil, it’s an anomaly in my body, but it’s its own thing, maybe even good in itself—just misguided, misdirected, it’s something that’s where it doesn’t belong. It’s lost.

There are 3 or 4 or 5 ways things get out of the body (this is where it becomes apparent that I have not taken much science since 9th grade biology). Perspiration, excretion, and respiration come to mind. For the cancer to get out, it needs an exit point.

This is where the Holy Spirit Portal comes in. This is how I am praying the cancer out of my body, and how you can join me, if you wish.

First, you know (or maybe you don’t) that the Holy Spirit is the third person of the Trinity (Creator, Christ and Holy Spirit). Jeff Von Wald and the re/New team led an amazing worship at church last weekend all about the Holy Spirit, Hebrew name Ru’ach, Greek name Pneumos—the ancient word that means wind or breath. Maybe I can get Jeff to post some of the quotes they read aloud at re/New to describe the HS. Or maybe you’d like to post your own description below—please do!

Now, this is the prayer. Take a deep, deep breath. What you are breathing in is pure Holy Spirit. Doesn’t matter if you’re in traffic on Storrow, on the T at the end of a humid Boston day at rush hour with all kinds of interesting smells in the air, or in a dewy meadow in the early morning of Vermont. Underneath the human and industrial muck is God’s own breath. Breathe it in. Imagine it going all the way down to your toes.

Now as you get ready to exhale, imagine it as a vacuum, sucking out one or two or perhaps ten of my free-floating cancer cells. Let your exhale accelerate, and WHOOSH! Set the cells free. Send them away, tell them there is a place for them, where they do belong—not in any other human or animal body, perhaps in deep space. God has a place for them. Because Ewing’s cells are called “blue cells” I have been (smile) imagining that they are flying off to a distant galaxy to start a superrace of humanoids called the Na’avi, a peaceful people.

Do this breath three times. Hopefully it’ll help you, too—you don’t have to be a yogi to know how cleansing and grounding and healing it is to stop what you’re doing and breathe.

The good thing about a prayer like this, is that it doesn’t take long to do, and it feels complete. You don’t have to worry that it was “enough.” God knows, we all have enough we are worrying about already.
The part that made me cry, though, (for reasons unrelated to Molly) is from her post "The Best Part":
Here’s my takeaway—at least, the first of many takeaways from this whole experience:  I was ashamed to want surgery, to want relief. I felt like it was a personal failure to ask for it. But if I hadn’t, it would have taken many more months to discover and diagnose my Ewing’s. How’s that for a holy spirit portal?
[Explanation of why she began calling it a "Holy Spirit Portal" here.]

Monday, May 3, 2010

[BADD] we live in a culture of shame

Today I emailed a friend of mine (who is queer and mentally ill), Subject "~closeting," telling her about how a casual friend and I were having a conversation on Facebook Wall about making plans to get together, and she suggested next week and I thought, "I don't know when my therapy appointment next week is," and I opted to move the conversation to private message rather than continuing it on our Facebook Walls. (Yes, some of that was about a desire to streamline the conversation, but that was only part of it.)

The friend I'd emailed said: "I have been really impressed that you posted about therapy both on FB and LJ."

I was so thrown by this. I mean, I have posted barely anything about the substance of the therapy I've had (all ~10 sessions in ~4 months), so it's not like I'm revealing much at all by publicly disclosing this information.

But if anyone were to ask me about my being in therapy, my honest answer would be something along the lines of, "Well, I'm experiencing a lot of grief and transition." This isn't anything that's going to make anyone think me less employable. This isn't anything that's going to make anyone uncomfortable to be around me.

People would in fact be sympathetic. I woudn't be perceived as "broken" or "less than" or "other."

There would in fact be a sense that I don't "need" to be in therapy -- that it's sort of a luxury item, like going to a spa or something, a nice thing to do to take care of oneself.

I would be perceived as still being a healthy, whole, high-functioning person at base.

But I wouldn't be perceived as someone who "isn't really sick" and is cheating the system. (This is connected to race, class, etc. privilege that I have.)

My "luxury item" doesn't preclude me doing my job. Would people's stance change if I had a condition (mental health or otherwise) that required specialist care far away and so I had to miss a lot of work?

Possibly a better title for this post would be, "we live in a culture of perfectionism."

Last Friday, Scott and I were talking about how chronic conditions are stigmatized, whereas temporary injuries aren't. But even so, I think there's a sense (at least in white, middle-class, culture) in which even when you're only temporarily "broken" you're not supposed to ask for "too much" in the way of "special accommodations." And that's one of the ways in which dis/abism affects all of us. If resources aren't provided for "those people" and then you become one of "those people," whether temporarily or permanently (and yes, I'm thinking of physical disability now, but you can make the parallel for mental health, too), you suffer too.

There's other stuff I want to talk about, too -- particularly about the "joking," dismissive, and pejorative things people say about people with mental illness (and with physical disabilities -- especially invisible ones) -- but that's a whole nother post.

Blogging Against Disablism Day 2010 was this past Saturday (May 1, as it is every year), and I had some posts in mind which I never made, so this is in some ways this my post for that day (even though there is a sense in which every day should be Blogging Against Disablism Day).