Tag: friends

Less than 24 hrs

My last injection is in 21 hours.

I shouldn’t feel the side effects lift for at least 24 to 48 hours after the injection, but today felt a lot easier than the previous few weeks. I woke up feeling good, I had a kind-of-big meeting during the day (I haven’t had a meeting in weeks, if not months). Maybe I just had a good day.

But I feel how close the end is. That sounds super cliche and kind of sentimental. But I think that my mind has taken over, and knows it is going to be released from this cycle of… (think of non-cliche word for pain and suffering and fail…) …pain and suffering and it is kicking in the endorphins, or whatever, to get me through the last tiny little bit.

Tomorrow we are going to have a few people over for pizza, i’m going to do my last injection, and then we are going to pop some champagne to celebrate.

I am going to go to sleep, and wake up to the rest of my life. That sounds cliche, and maybe even ominous, but I’ve been waiting for this for 18 months now.

I had a major freak out today

I had been building up to this.

i get this sense from people, and its not my paranoia (b/c others have confirmed it) that they think I am healthy, and or I am getting away with something. having my cake and eating it too. being on sick leave, but still being productive.

of course the whole effort to continue working as if i am normal is a classic defense mechanism. “if i can keep working, i will know i am okay.” or “if people keep seeing me release things, i won’t look weak or sick.”

it is so demoralizing to have that backfire so badly, as it seems to be right now. it is awful to have to prove how sick i am to someone. And of course, its impossible. Totally impossible. But there I was, on the phone, trying to explain every facet of how much pain and anxiety and discomfort and nausea I am in. I had to describe my mouth lesions, and the pain of eating. I had to explain that the lesions and joint pain from Reiter’s syndrome is the same pain that full-blown AIDS patients get. I had to rehearse the whole thing on the phone today. I had to prove my pain.

Part of the problem is that I am perceived as being productive, and therefore healthy. But my productivity is completely derived from my crew. All I do is make a few decisions here and there, stumble around scratching my legs, forget to take my drugs, and generally tire myself out and then go home exhausted. Okay, that’s a bit of an exaggeration, but the point is, its not me, its my crew. And *then* the conversation turns into jealousy and/or resentment that I have assistants.

O had a major intervention with me tonight. I had been realizing that I had a problem for a few weeks, but I had no idea what to do about it. I have such a hard time saying no. We worked through a lot of tactics and strategies.

I am writing to say I am scaling back. Drastically. I only have 12 more weeks. 8 1/2 until I go to portland to finish up the treatment.

I put an autoresponder on my email. If you write me, you will get it.

I am only going in to the studio one day a week, at most.

I am not going to start anything new. Nothing. And I am going to finish things that are more than 75% done.

I am going to stop releasing or publishing anything, as people seem to equate me releasing new work with me being healthy.

I am going to focus my energy on riding my bicycle, reading at the library, and meditating.

***

This is *so* hard to do. Partly write this here so you all understand what I am going through, and also so you know why i may not respond to email, and also to help support me and keep me in check.

A Tarot Reading: “No”

tarot - the ace of no

Addwag writes:

In honor of your last few post I did a tarot reading for you and I thought the card I pulled for you might be helpful for you to see.

I really don’t know what to say to you sometimes, because you are so much like me- I feel like I am giving myself advice which, lets be honest, I never listen to – esp. when it comes from myself.. I am too busy trying not to fall behind whatever self imposed deadlines I made for myself.

hope you’re feeling a bit more rested (but that doesn’t mean you should get out of bed)

mantra: no no no..

xoo
a

A lesson I am trying so hard to learn

Addwag writes via email:

PS i just read your blog-

why in gods name are you emailing me about my stupid questions when you feel terrible? although I appreciate it, please next time, it can wait, I promise..  send me an email that says something like (I will write it so you can just paste the reply in)

“I feel like shit today and I shouldn’t be on my computer so ping me another day when I don’t feel like I am dying of a rare disease you get from monkeys in the congo”

sorry- but us overachievers have got to learn to force ourselves to stop working sometimes.. xoo

if there is anything I can do for 2,000 miles away let me know, promise?

It is all a front

On Mar 15, 2009, at 12:27 PM, PD wrote:

i think b/c your studio work seems productive i assumed that you were feeling better. but i know you well enough to know that i might have been off on that assumption.

Yeah, duh! Of course it is all a front. It is all a way of me thinking that I am okay. Studio production is up, therefore I must be okay. Both telling the outside world, and telling myself. If I keep acting like I am fine I will be fine. (Lie.)

But these last two months have been really hard. And i’ve worn myself down.

And I’m pretty much going to spend the day in bed today. sick to my stomach. exhausted. my skin is falling apart.

A Letter to K

A letter to K, who was upset with me about my visit last November, but hadn’t said anything about it to me since.

jesus, k.

i’m sorry. i had no idea. i’m sorry.

i’m really caught off guard by this. stunned. totally reeling, from the content, from the tone. trying hard not try cry.

your friendship means so much to me, that it hurts both that i hurt you, and also that you didn’t tell me. these are small things that have built up into serious anger. I don’t even know what ‘startlogic’ is?

and also, i felt so grateful for your patience with me. which makes it all the more painful to realize you were angry at me for it. i was a lot more tired and sick than i thought i would be by the time i got to LA last November. each month provides new difficulties, and that was the month I spent rolling around on the ground, ripping my clothes off to try to cool off on the concrete. I got back, got a name for it (dysesthesia), and a drug for it, which then killed my libido entirely, and dulled the dysesthesia so that I can leave the house without being afraid of a seizure like episode.

i hate not being able to be completely independent. i hate the fact that my fingers have so many lesions on them that I can’t do my own dishes, and it hurts too much to put gloves on and take them off, that I have to save up dishes for a ‘gloving’. i hate that i have no appetite, which makes me crash, which makes me cry. i hate that i have lost my libido, and what that has meant for my relationship O, someone i really care about, who rationally understands it is chemical, but who feels rejected nonetheless. i hate that i have lost half of my hair. and i hate that i have to ask people for their seat on the subway or i won’t make it through the ride, and i more than anything i hate being told to fuck off by my fellow subway riders. my vision is going (i’m seeing double a lot, for a while i was hallucinating), my memory left a long time ago (vis-a-vis startlogic), i am starting to experience real chemical depression, (as per all the prognoses of the drug treatment.)

yesterday was the one year mark from my diagnosis. there is no question this has been the hardest year of my life. the cruel irony is that it is something i have to endure myself (it is a very lonely affair, and only people who have been *really* sick get it) and yet, am completely dependent on everyone around me, for things i can’t do, for thinks i would normally be able to do, for understanding.

i have an intern who has been working with me for two months. she is dedicated, works remotely half of the time, and is doing a great job translating the  book into Spanish. Today I realized I never told her about the cancer. It was a really awkward moment. I guess i thought that I was going to tell her, or that I already told her, or something. I don’t like to tell people immediately, both b/c of pride, trust, and a desire for them to realize that I am normal. or rather really trying hard to pretend like everything is normal. but when i told her, all of a sudden she realized why I kept coming in late, and somedays couldn’t even make it in at all. why I was getting my schedule all confused. And why i have so many drugs on my studio desk.

i’m trying so hard to act like i am normal, but i’m not. i’m on a “highly toxic” treatment. it is so hard to look normal from the outside, and be falling apart on the inside and the edges. and i’m not just talking about the way the drugs fuck with my emotions, and the ensuing chemical depression, but having my body fall apart from the inside. i have so many holes in my tongue i can’t eat anything without pain. i have a permanent gash in the back of my mouth near my jaw. when i eat, i leave bloodstains on my napkin at the edges of my mouth. half of the time i can’t wear in-ear earphones because the lesions in my ears keep getting re-infected. My eyes flake off scales of skin.

but i’m trying so hard to act like i am normal. maybe too hard

i’m really scared about this coming trip. maybe that is why i am reacting so emotionally to this. after the last travel, i cancelled all travel excepting this trip to CAA. i’ve turned down speaking gigs in berlin, croatia, argentina, los angeles, university of iowa, etc. b/c traveling is so hard. traveling is hard just getting to and from my studio and my apartment.

i had lunch with an artist friend last week. i knew he had been sick a few years back, but i didn’t know what. something thyroid related. turns out he had thyroid cancer. while they were removing the thyroid they found it had spread to all the lymph nodes in his neck — out those came. it was so comforting to meet someone who had been dealing with all of these things. I have found people here and there who had been diagnosed, but usually at such an early stage that it was just one minor surgery. It was nice to talk to someone who had something more advanced, like myself, but who is living his life.  His condition requires a little bit more maintenance than mine will be at three years out, as I did not have any organs removed, but he gets it.

He was *really inspirational* for me to try to chill out, he has basically stopped traveling, or speaking publicly, keeps his studio in his apartment, and doesn’t go out for social events. And despite all of that, his career is soaring.  he helped me think about trying to not pretend like i am normal. to sleep in all day because that is what my body needs. to say no to things. more often. and to rest. because it is my life on the line.

I’m sorry if this is a lot. A big response. i don’t want you angry at me. i don’t want you to hold a grudge against me for something i either don’t remember, or couldn’t control.

i want to stay with you because i want to spend time with you. i want you to meet O. i could stay at my aunts, or cousins, or CHP has even offered her couch. but i don’t get to see you very often, and these days, with travel so much harder for me, i see you even less.

if there is anything specific i can do to avoid impinging on you more than a normal visit would, please let me know. can i order groceries from a Fresh Direct style delivery service? I’ll take you out for dinner every night. i’ll rent a car, if you think that would help. i will bring lots of cliff bars.

http://www.pinkdot.com/
http://www.paradiseo.com/

???

I love you dearly K, and I don’t want you upset with me,

m

inspiring inspiration

We had dinner last night at BH and JW’s. The food was wonderful. They played some great music we had never heard of before. We caught the 1990 hiphop references that are generationally specific.

As we were leaving BH said something to me like “you are my motivation. Whenever I feel overwhelmed or like I have so much on my plate and I think about how much you are going through and how productive you remain.” it was really touching. And affirming.

As per usual I defer much of the credit to my team of  two to three assistants. Without them I would not be able to handle this.