Tuesday, April 21, 2009

I Felt Strong Last Night on Camera 3.

As part of my physical therapy to get my body strong again (not that I'm feeling particularly weak, but staying strong is a continuing effort, much to my rebellious chagrin and I've felt recently lazy. Ernie said to me that I treat my doctor visits like a junkie trying to pass a drug test. I eat and exercise for the two weeks prior to the visit, get a big thumb's up and then go out for pizza. I might as well be hunched over a crack pipe.)

So, in the spirit of letting you know that I'm totally fooling myself, this time around, I've been trying to see how long I can stand, working the cameras at Kulak's, before I have to sit.

When I began doing this last year, I would be totally exhausted after less than an hour. And the last half of that hour was a strain. Many is the time, even if the music was good, I'd find myself watching that clock and noticing how painfully slowly time can pass.

Last week, I was feeling weak and nauseous the whole night, finally leaving a half hour before it was over. (On Monday open mic nights, a lot of the other volunteers are there and you can usually find someone to take your place).

Sometimes I feel strong as an ox, like last night, where I lasted on camera 3 for two hours, finally giving it over to Dennis for the last half hour. It felt good to feel almost normal. I just wish it were more consistent.

I don't mean to sound like I'm complaining. But more than a few friends have been inquiring about the exact state of health and mind that I'm in right now. I'm trying to be candid, but writing this diary has made me aware of the fact that I'm not the most self-aware person on the block.

Then, just in the nick of time comes this email.
My name is J. I am not a traditional student. I’m 53 years old and the mother of two adult children. And, from out of the profound sadness of losing my husband to cancer four years ago, I made the decision to continue moving forward and pursue my dream of healing through art and therapy. When I’m not studying, I love to hike, take photos, sketch, read, kayak (especially on the coast of Maine), spend time with family and friends, and support my daughter in her work and study at UCLA as she pursues her dream of becoming a stage manager. Somehow, this brief description doesn’t quite capture my heart, but hopefully, it will help give you a tiny point of reference.
IOW, she's living in the Bonus Round and she didn't have to die to get there! And now she wants to create healing.
As you may already know from speaking with M, I have an assignment to present myself to the class as a male who has been diagnosed with HIV. The assignment is designed to help us better understand and experience the world through another person’s lens.
She already knows. She's living it now. She just doesn't know it.
The underlying idea challenges the notion that authentic empathy and understanding cannot occur outside of personal experience. However, experiences are no different than fingerprints. Therefore, as a therapist in training, every person on the planet has the potentiality of becoming my teacher from the moment we connect. It is in this spirit that I am here to learn from you.
And I get the gift of being allowed to learn from her. I believe that we find healing through our mutuality. So, I answered her questions candidly, and when I reread this the next day, I realized I hadn't really thought about a lot of this in a long time, or written about it.

So, for you who love navel-gazing, I asked J if I could repost her questionaire and my answers. I have edited them slightly just for clarity's sake. I wrote them very quickly and didn't correct grammar or fix broken sentences.
The following questions are for your consideration:
1. If I were your therapist, what would you most want me to understand about you in regard to your diagnosis?
Steve: That going to the edge of death is not a scary experience. I have a peace about "eternity." "Death" felt like a comforting angel that gently enfolded me and brought peace into the suffering I was enduring. Knowing I could just make a choice to die was one of the things, looking back, which helped me survive. I liked that I had the power.

The other thing is that coming back to life was startling and almost overwhelming. Having made peace with death, I actually found myself feeling cheated, frustrated and angry. Like a student who's finished a term paper and the teacher suddenly hands it back and says to start over.
And, why is it important to you that I have this knowledge?
Because it's important information about life itself, and you can't learn it by proxy. However, I think one can help other persons to touch it through the use of music. And that's why I never needed a therapist. All I need is a piano.

In many ways, there's really no way for you to understand what it feels like, to me, to live with this disease until you've heard all the songs from The Last Session. Those songs contain the answers to any questions you might have. I wrote those songs in order to save my own life -- and they will help you actually feel it.

The opening number, "Save Me A Seat," is a good place to start. You can find two versions of it here.
2. Since you were diagnosed with HIV, do you think about yourself differently than you did previously?
It made me prioritize. First, take care of my health. Second, take care of my health. Third, appreciate my friends.

I don't know if I think about myself differently. I've grown a lot, but how much of that can be attributed to HIV? AIDS informs my every move since I have to always know what time it is to take pills. I have to remember to never forget to take my pills, or get myself trapped somewhere without them.

So, maybe I'm more aware of how fragile life can be.
3. Do you worry about how other people think of you in light of your diagnosis?
Never. Almost never. It's different than what your question might suggest. I do find myself having to choose when and where to talk about it. For some, hearing the news may crush them, especially if they've become fond of me as a potential friend. It can be like hitting them with a hammer and they fear for my life. So, yes, I'm aware of what people think, but not in the "they're going to be afraid of me or hate me" way. My proximity is what defeats their fear. They like me so they are not afraid of me (because I am not someone that anyone has to be afraid of).

But some people, who've never knowingly met a person with AIDS, we talk about it and I can assure them that I have more to fear from them than they have from me. After all, they're the ones with working immune systems.
4. Do you find it difficult to separate the soul from the diagnosis?
[NOTE FROM ME: I hesitated in answering this question. I also hesitated in asking her to clarify it or find out where's she might be coming from, religion-wise. Myself, I am a secular person, but I don't mind using the language of religion in order to express how I feel in private communication. This was between herself and myself. But, since it was part of the questionaire, I'm going to include it in this entry. Just know that I am pushing no religion. I am selling nothing by my music. I do not belong to any cult or group. But this is what I said to her:]
They cannot be separated. We are our souls. My AIDS is as much a part of me as a hand or a foot. Therefore, my soul also has AIDS. And I would not have it any other way.
[Me again. I don't mean for that last answer to be taken literally. I also don't mean it to be heavy sounding. You should read it with a big smile on your face, as if I'm saying, "No, it's not a bigger deal than what you struggle with in your life" and "Yeah, it's a big deal, but hey, life's a bitch sometimes. But not all the time."]

EPILOGUE: Last night, I sat next to D. Whitney Quinn and we were talking about the Book of Job. He said, "My favorite part was where Job just looked at his well-meaning friends and said, 'Stop talking and casting about blame. Just be with me.'"

Last night, the atmosphere at the Woodshed was really warm. It's becoming a place of healing, but not because it set out to become a place of healing. It just feels good to be there and the regulars on the Monday open mic are becoming quite skilled. There's new music beginning to re-form around this little community of volunteers and musicians. So many were singing on each other's songs. Hmmm. Mutuality?

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