sarcoidosis (spreading)

Tonight I attended a John Cage concert at some chapel at Harvard University. What started out as this beautiful, meditative tone poem for piano and violin, with increasingly sustained periods of silence between each note… well I was totally into it at first. It felt like the perfect antidote.

But then those silences were disrupted with thoughts of Trump. I would try to return to the music, only to find that the fleeting thoughts were becoming less and less fleeting getting heavier and darker. Taking on more volume and mass. And then I’d return to the room, only to be pulled away by the thoughts, getting louder and thicker. And I’d return for a brief second before succumbing to fear and sadness. An then an even briefer return. Until there was a wall, a real wall, between the music and I, a wall built on terror and anger and bewilderment and dread. This is the wall that Trump has already built.

And soon I could barely sit there in the chapel. I found myself squirming, restless, with shortness of breath. Utterly squashed. Annihilated and squashed.

How had the concert become so suffocating? Why this claustrophobic absent presence? Where was John Cage when I needed him most?

I know that shortness of breath is one of the symptoms of sarcoidosis and I have felt so fortunate that I do not have those symptoms, although I do have sarcoidosis, and it’s spreading… but even with sarcoidosis spreading, it was very easy to not think about it when I was diagnosed with it a year and a half ago.
But this Trump dilemma feels exponentially more worrisome than an auto-immune disease of unknown origins.
Although the causes of sarcoidosis are unknown, some say it’s probably related to toxins in the environment, something you inhaled that was not meant to be inhaled.  But you can say that about anything.
Certainly Trump is caused by toxins in the environment.
Actually now it appears that Trump is THE cause of toxins in the environment.
But what causes Trump?
Why is there evil in the world?
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that person

i fear that i’ve become how I imagine people see me.

they don’t see this childish person trapped in this old’ish body

they don’t see that i have or once had a sense of humor

or any kind of creative thought

they don’t see anyone with any kind of passion or interests

or depth

or depth of feeling

they don’t hear the music playing in my head

they see my fears and insecurities

but they might see them more as quirks of character

i wish i could make them see me differently

that I could control this somehow

but this weight of these imagined perceptions

this weight i have not been able to shed


standing on the scale each morning does not seem to help



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something must be wrong with my metabolism or something. walking a mile in the cold on a night that I would not consider to be cold one year ago left me completely winded and frozen. But I am glad that something beyond me pushed me to walk through it. And then one more mile after that. by the time I arrived at the theater, my body was in shock. And I don’t even think it was below 35 degrees out. it may have been muggy for other people,  for all I know.

and my typing is getting worse. in the above paragraph, it took about 10 attempts to type something correctly.

and then there’s my spelling. i was writing an email to a friend and I wanted to use the word “unprecedented,” but for some reason I was completely blanking out on how to spell it. unpresidented, unprescendented, unpresented, until finally I gave up and replaced it with unique. and unique is as meaningless an adjective as interesting.

and by the way, it took 3 attempts for me to type and spell correctly adjective.

maybe this is just my way of conforming to the wealthiest country with the poorest educational system, which is the real reason why tens of millions voted for Trump. i wonder how Trump supporters would fare in a spelling bee against non-Trump supporters. I don’t think they’d make it past the first round.

not because all of them are unintelligent. they just never learned critical thinking or how to discriminate in the face of untruth.

as for the others, they are just wretched awful people. who even cares if they are intelligent or not? because they should not even exist.

gosh, i didn’t mean to go on like this. it was very selfish of me. I just didn’t know who else to turn to.


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current events

i couldn’t sleep at all last night. I’m not sure why. I was depleted. I was exhausted. But it felt like there was a live current going through my body. and then I began to think thoughts that you are not supposed to think if you can’t fall asleep. such as “how am I going to function tomorrow? how will I possibly make it through the day? how many mistakes will I make at work? and how many mistakes will I make in human communication? and now what time is it? fuck!!” Which is cognitively unhealthy thinking.

But this live current could care less about cognition. it is alive in ways the rest of me is not. i suppose it’s possible it may outlive me. And then it will simply live as free floating energy.

maybe i could follow its lead. maybe it is guiding me to something and I need to pay attention to it. maybe it can be my teacher and my guide. maybe it could help me on those days when my spirit animal if off in the wilderness.

but really, if I don’t get more than 6 hours of sleep tonight, I think I might be in real trouble.

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Autumn Inn

an overflow of unfortunate decisions and nondecisions that began at

1:00 a.m when I suddenly had an urgency to create a short video piece that I for whatever reason I just had to post on Facebook at that moment… or else.

1:45 a.m. video completed and posted to facebook

2:30 a.m. made it to bed.

3:30 a.m. could not fall asleep because I was too cold. it was freezing, but the owner of the house had just scolded me for using too much heat.

4:30 a.m. finally fell asleep after adding an extra layer, one of which was a down parka.

10:00 a.m. stumbled out of bed, ate oatmeal, and began to pack up for my one day trip to Northampton to meet with a gallery director about my performance proposal … and then spend the night at a hotel, and then go on a short hike somewhere around there the next day.

11:00 a.m. began packing for my one night stay

12:15 p.m. finally finished packing. I have no idea why it took so long.

12:30 tried to go to the organic grocery store to pick up lunch but there was no parking to be found. I could have easily just walked there

12:45 continued driving down Centre Street for lunch at a mediocre diner where I knew I would find parking.

1:45 left the diner and headed out to Northampton, at least 90 minutes late. Emailed the gallery director to tell her I would be running late. I offered to reschedule if this was an inconvenience, but since she didn’t respond, I thought everything would be find.

3:45 arrived at the gallery. The gallery director asked why I was so late. She did not say hello or thank me for coming, things that I would expect a human to do. I told her the traffic was slow leaving Boston, which I guess was partially true. I did not tell her that it was personal traffic that had nothing to do with driving. Then she said that she only had a few minutes. I showed her a couple of excerpts from the performance and I could tell she had absolutely no interest. But that did not deter me from showing her a second excerpt.

She said she would get back to me in a few weeks. I am guessing I will never hear from her again. Which is fine because life is too short to have people like intruding upon it.

4:30 went to a coffee joint. the staff was hip and unfriendly. the place was packed, no empty tables, but I stood around because I had nowhere else to go. Eventually found a table. And I thought, maybe it’s time to look into where I am going to stay tonight because I still had not made a reservation. I could not find anything online in my price range that did not look depressing. So I went on Priceline, bid $60 on a “3 star” hotel. My bid was rejected. Tried another bid at $80, which became $97 adding in tax. My bid was accepted and it showed that I would be staying at the Autumn Inn. Read read some of the user reviews, mainly people saying that it was a 1 star hotel at the very max. The photos were equally dismal.

I thought that maybe I should just swallow the $97 loss and try to look at it as a speeding ticket, and head “home.” But then I was so angry at myself for my poor judgement, I decided that I deserved to spend the night there. And besides that, if I stayed, I could get up early and hike somewhere beautiful, which was actually my excuse for traveling there. the gallery was secondary. And then, refreshed and exhilarated from my hike, I could drive drive to Boston in time for my late afternoon OKcupid date. But then I thought how nice it would be wake up and already be in Boston, and then I could just wander around this park in Cambridge I hear is so beautiful.

But then I thought, c’mon… what’s one night in a shitty hotel? Why am I so spoiled?

And this went on back and forth, back and forth.

6:00 Dinner at a falafel place, quite good actually. since they had wi-fi, I continued to look online for any clues from the universe as to whether I should stay or head back.

6:45 Decided to stay. Went back to the coffee joint to continue my online research and use the bathroom. It was closed. So I walked over to “State Street Fruit” which was actually a liquor store with a small produce section. I asked if I could use their bathroom. The cashier told me I could not and suggested that I go to the coffee joint.

I thought, I think I’ll be OK to hang on until I arrive at the hotel. But I had forgotten where I had parked. In absolute desperation, I found found a small alley with some bushes between the back of an Indian restaurant and a real estate office that appeared to be closed. I went, undetected.

7:40 Located my car.

7:44 drove up and down Elm Street in search of the Autumn Inn. It took several passes before I finally found it. I thought I could at least give the room a chance…  and then I could decide if it was tolerable or not. Just give a chance, I told myself. Is that too much to ask?

8:00 arrived at the hotel room. it was even more depressing than I thought. I think the empty old rocking chair in the corner really got to me for some reason. I anticipated a night of nightmares. just very bad vibes about the hotel… And then the loud stomping of the hotel guests above me. the universe seemed to be telling me something.

8:30 got back in my car and headed “home.” most of the trip somehow managing not to think about this squandered day and squandered money.

10:30 arrived “home.” i tried to find the positives. the people at the falafel place were nice.


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Jennifer #12

silly me to choose to relocate to the unfriendliest city on earth at the dawn of the fascist coup. the absolute worst time to be so far from one’s community. Really really bad timing on my part.

and it’s very confusing because it’s hard to distinguish between the rudeness and aggression of Bostonians on trains, sidewalks, streets, highways … and the vengeful aggression of Trump supporters.

which is strange because this is one of the most progressive cities in the country, but I guess progressive political leanings do not always extend as compassionate behavior.

so when people i pass in the hallway at work who do not say hello or even make eye contact should I just assume they:

  1. are Bostonians ?
  2. are Trump supporters?
  3. are both?
  4. do not particularly like me in particular?
  5. are unhappy, period?
  6. are happy being unfriendly?
  7. are thinking that I am the one who is unfriendly and that they are just responding to the vibe I am giving off?
  8. all of the above?
  9. something in a realm beyond my comprehension?

But the nice thing is that when someone at work actually does make eye contact and say hello, that is almost like a shock to the system. It really wakes me up.

I decided to give my copies of the New Yorker to the woman who is the friendliest person to me at work. And now she is especially friendly. And of course totally not a Trump supporter. And she wears cool dorky glasses. I have to find out where she is from because she certainly does not seem like a Bostonian or a New Englander.

So far most of my conversations with her do not get beyond, “Hi. How’s it going?” But I can’t tell you how nice it feels to get a little break from invisibility.

Of course her name is Jennifer. Jennifers are always the friendliest.

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Eve of election night eve

The owner of the house where I have been dwelling for the past 9 months invited me to watch the election night returns with her on Tuesday. My first thought was that I would rather be waterboarded than to suffer through it, even if the fascist madman is hopefully trounced. But the thought of watching and waiting sounds torturous. Which is why I thanked her and said I would probably be at the movies. Or any theater that is dark. Or anywhere where it is quiet and you can close your eyes. 

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Deep deep bones

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Retreat Trails

My plan for today was a road trip to Vermont, where I have always fantasized about going, and now it’s merely a 2 hour drive from Boston. I thought I would hit the road in plenty of time to take a short hike somewhere incredibly awestrikingly amazingly beautiful and wander around Brattleboro. But for some reason, I couldn’t fall asleep last night, finally succumbing at around 4:30 a.m. and then sleeping until 11:00 and not even hitting the road until 1:00–at which point I was in a very bad mood, upset with myself for my not very apt time management skills–and then trying to make up for lost time on the drive. But encountering mountain roads with hairpin turns and angry locals trying to pass me on these 1 lane roads. By the time I reached Vermont, I was spent.

I am not sure what is going on with me these days, but I have zero energy and wander around in a state of zombie fatigue. Perhaps it’s the sarcoidosis. Perhaps it’s just loneliness.

And then I spent about an hour searching for the Retreat Trails. I found signs and maps at what appeared to be the trailheads… but the paths themselves were unfindable. I am not quite sure what went wrong. Waze and Google Maps were useless even when I could get a cell signal, leading down roads that either did not exist or guided me to a golf course and a petting zoo.

I decided to abandon the search since it was getting dark, but I was able to find my way to the lovely town of Brattleboro, which was like a refuge. Everything you’d want in an New England town.

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seeing eye dog

i seem to be in the midst of one of these literal periods. where i only take in what the literal world brings me. and then things feel too cramped for me to see very much beyond it. the more literal world is the one with fear and cowardice and shame and anxiety and anger and regret and self-incrimination. my literal world is called Boston. the non-literal world is the one where songs and dreams and titles of new performances or strings of words that do not all relate to the literal world enter my consciousness. I’ve been so out of touch with that world. there’s not even room to daydream about anything not related to the literal.

How does one navigate from the literal world to the non-literal world? with a slide-rule? with a compass? with a seeing eye dog.

now there’s a beautiful concept . A dog that sees with a dog’s eyes and sees for those who are seeking. i seek a seeing eye dog to guide me out from under the yoke of the literal. to create space. to open up the sky. to follow the sky to the cosmos. spaciousness is what i am seeking.

i pray to the dog that sees to find me and lead me out of this place i feel so cornered in. to remove the walls my back is up against.

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waiting for the train

i’ve never noticed this before. until now. if i close my eyes and listen through the ringing in my ears, i can hear a distant rumble. i’ve been living in this room for 8 months and it is only now that i realize i can hear the train. maybe this is a sign of things finally beginning to open up. i had thought that something more dramatic might be needed. but maybe not. maybe this is it.

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Good person(s)

This morning, while walking to work, I passed by this guy who said “I’m a good person” to nobody in particular. And I thought this was so great and admirable. I mean, I wish I had the confidence to say that. Maybe it should be my new mantra and if I repeat it each time I catch my mind wandering, I will gradually become a good person. And then maybe the next time I pass by this guy, he will say to me “You are a good person.” And I will say, “Thanks. That means a lot to me. I think you’re a good person,  too.” And he might say, “Oh, thanks. But it’s not always true.” And I might say, “I’m sorry you feel that way. I really think you have a lot to offer.” And he might say, “Gosh, it’s so rare that I see things that way.” And I might say, “I imagine you don’t always see yourself as others see you. Because if  you did, just think about how much more confident you’d feel and then you would blossom into an even better person.” And he might say, “Wait. I thought you already said I was a good person.” And I might say, “You are a good person. But I never would have noticed if you did not say it that day we walked past each other. That raised my awareness.” And he might say, “I think you are the most aware person I have ever met.” And I might say, “It sounds like maybe you not have met very many people.” And he might say, “I knew you would say that.” And I might say, “Wow. You’ve got me pegged! I think you are more aware than you give yourself credit for.” And he might say, “Thanks. It’s very kind of you to say that.” And I might leave our conversation with an impression that maybe I am a good person after all. All I needed was a better person to convince  me of that.

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Further field studies

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