Summer when the breeze is cool and the humidity is low is about perfect. Add my Pandora Debussy channel and a few cats sleeping on the couch and what more could a person ask for.


Contentment is hard to come by, so I savor moments like this. Today I learned two things to bring this rare state about. The first came from a feng shui practitioner that I hired to evaluate my home. I figured since my illness coincided with my nearly 8 years in this home that perhaps there are things I can do to remedy my health by way of caring for spaces. Thomas Moore has a great book called Care of the Soul, in which he speaks eloquently about spaces as manifestation of personal or societal disease. To care for spaces does as much to care for an individual or a community as actually treating the physical body.


I learned that my home has lots of issues in the health areas, but they are easily remedied. I will heal my home, as my energy allows. Perhaps I'll notice parallels in my body, we'll see.


As a total aside, Feng Shui also has fu dogs, these crosses between dragons and dogs, both male and female. You place them at your entrance to ward of malicious intent. They look fierce, like amped up super heroes or beasts from God's martial fantasy farm. I will get two fu dogs, mostly because I love to say fu dogs. fu dogs.


The second thing I learned today is that even though I think everything I love is being taken away from me by this illness -- my love of singing, of gardening, of walking places, or seeing friends, or simple pleasures like driving or buying food -- that actually it can't take everything I love away from me....because it can't take me away from me. Debussy and a perfect day make me sentimental, I guess. In any event, I'm still here inside and outside this body, stripped of purpose and pursuits perhaps, and a little worse for the wear, but here in essence.


How we live with ourselves is really what it's all about. I'm learning. Fu dogs!!!

Keith Jarrett is my new hero

I started telling people that I'm chronically ill. I emailed my music newsletter list last week with cancellation news of a show, and I was overwhelmed by the nice responses and resources that people sent to me. I think sometimes I forget that people like me. I don't know what that's about. 


One person sent me a link to the Fibromyalgia and Fatigue Center in Pittsburgh. I signed up for a complimentary visit, thinking maybe I've got Chronic Fatigue instead of just a chronic virus. I went today (ironically, the drive across town nearly flattened me) and it turns out I'm probably right. They know how to treat it, though, so I can recover as much of my energy as is possible. You know, the stuff that hasn't been damaged and destroyed for all time.


It'll cost thousands and I'm not sure how I'm going to afford it. But I'm going to do it anyway, and trust that the resources will be provided somehow. What other choice do I have?


After a long nap, I hopped on line this afternoon to see what resources are out there for musicians and health. Found out Cher has Chronic Fatigue due to Epstein Barr virus. I'm in Moonstruck company, baby! And Keith Jarrett has Chronic Fatigue. Ok, he's my new hero, because if you've never heard his double disc of Shostakovich preludes and fugues, you haven't really lived. They are sublime in every way.


I suspect I'll find a lot of new role models and heros on this new adventure. Now that is truly something to look forward to.

A few small victories

My acupuncturist changed the direction of one of my chakra wheels yesterday. I didn't know chakras had wheels -- I thought they just had colors. I must scour the interwebs for more information on that. Perhaps a future entry I'll tell you what I find.


In the meantime, and in an effort to introduce balance to this blog, I have a few small victories that warrant a short entry:


Small Victory #1: Last night I made it down to Istanbul to hear Eve Goodman & John Caldwell, with Tracy Drach. I didn't last the whole night, but the fact that I made it there and had a nice dinner and heard live music is something indeed.


RAH!


Small Victory #2: I just returned home from a 10 minute walk under blue skies. My lungs and limbs are heavy, but ten minutes anywhere would have been unthinkable on Friday. And no acute symptoms.


YAY!


Small Victory #3: This morning I re-listened to Rick DiClemete's reading of my astrological chart from earlier this Spring and pulled out a sketch pad and made drawings. Doodles really, but doodles with an art pencil on art paper.


YAWP!

A word of hope to all who need it: 

"Don't Let the Bastards Get You Down" - Margaret Atwood

Bag full of pills & and viral art direction

Much as I don't have the midas touch with music marketing and self-promotion, I do sort of love all the details. So, I was really looking forward to a design seminar I was registered to take today for my part-time day job (architecture firm). I thought it'd be useful for the music biz, too. After all, in the end, marketing is marketing is marketing.

Instead? I'm sucking down a bag full of pills for my chronic Epstein Barr virus and trying to make sure I can breath. I  am on 4 -- count 'em -- 4 antivirals. I probably take 20 pills with each meal. I only hope they kill all those little bastard viruses that are having way too much fun making my body totally anaerobic.

I'm looking for balance. I can't sing 'cause I get winded. That's not balance.

Back in the early 90s I dropped out of school for a semester due to mono and pneumonia. I was supposed to create and present my senior show, and I had grand ideas that involved large paper mache fruit and mennonite coverings. The mono totally changed my show. It was my new artistic director.

Instead of product I could only focused on process. And the process had to be gentle and small-scale. I moved home and bought myself a little watercolor block. Oils or other art were just too strenuous or chemical. So watercolors it was. I slouched on my folk's cream colored feather futon in the tv room and attempted to make 1 painting a day. Didn't matter what it was. And in the end I thought I'd have stacks of paintings to select from for the senior show, once I got well.

I didn't have stacks, but I had a lot of paintings, and I sold almost every single one of them. I was kind of proud of that. But I was most proud that I gave up the goal. I was delighted to find I became a better painter and more in tune with what watercolor does. It's talking all the time. You could look at the dates at the bottom of the painting and you could see me getting better. You could see me trusting the material more and more. You could see I became a better listener.

Having a hard time breathing is reminding me of this. I don't know how I continue as a singer-songwriter when I can't sing, and practice/songwriting is just too strenuous. Sitting at a computer fatigues me. 

I guess maybe my virus is my art director once again. I'll ask a friend to buy me a new little watercolor block. I'll set it beside my bag full of pills. I'll paint again.

Roller coaster ride

Today it's back to muscle fatigue, fever, headaches, and tight throat. You know there are two things I miss most from this:


1 - I can't travel. A simple 1-day road trip can devastate me. I love to travel, so the prospect of not doing anymore of this upsets me. Plus, there go all hopes of doing music tours.....


2 - I haven't had 2 days in a row of feeling good since last year. And I forget it every day that I feel ok. If I feel good I think "Hey, maybe I'm kicking this" only to find out the next day or maybe later that same day that it's a ferris wheel roller coaster ride and I can't get off. And every time I dip down I have a new fresh wave of despair. 


These are the things I miss. I miss the prospect of seeing the world with my own eyes. I miss the expectation of tomorrow and making plans. The Catholics were wrong: purgatory is actually hell. 


My mantra these days is "This too shall pass." 

Budding evangelist for acupuncture

Yesterday I could barely drag myself from one position to another. I couldn't speak because of the energy it took. I could barely cry, because it exhausted me. I was clearly losing the battle with my viral friends. 


Somehow I managed to drag myself to my car and drive a mile to my acupuncture appointment. One hour later I could walk, I could carry a conversation (brief), I didn't want to cry. I know if I would have stayed at home and rested on my couch all day that I'd feel like a brick, just as sick as ever.


So, even though I'll lose 2 great-paying gigs this week because I've got no stamina, I'm gonna sing small praises to acupuncture. I can make myself a meal at home and answer the phone. Life is good today.

Living means turning

I had intended for this blog to catalog my art-making, but I'm now discovering that if I blog at all it will probably be about my healing. Yesterday I was diagnosed with Epstein Barr virus, after 9 months of "Why don't I feel better?" It feels good to know something. Beyond that I have no idea. Life is turning me somewhere, and to live peacefully means following down this road. I cannot step off. What this means for songwriting and recording and performing, I don't know. My main hope now is finding the right healers, people who can walk with me and know my needs deeply.