Skola's random bitching

Hello all,

Many of you know that just over two years ago, I started an event known as The Aviary, an alternative lifestyle event housed at The Arts Garage in Philadelphia. The event started in the smallest of the venue’s spaces, and eventually grew to the point of renting out the entire, 8,000 square foot, venue each month. In the meantime, I have acquired some other events and have others in mind that I would like to try out.

However, I am now at the point of having completely outgrown The Arts Garage, and am hunting for a new venue. I find myself with two options. In option one, I find a new nightclub that will give me the second Saturday of each month at a reasonable rate, that has 9,000+ square feet. If anyone is connected to a club that has that sort of opening in the greater Philadelphia area, I’d love to meet with them and talk to them ASAP. Option two, which seems more likely at this juncture, is that I try to attain a space of my own, in which I not only run my own events, but also work with many of the other promoters I have been fortunate enough to get to know over the last decade. If pursuing option two, I have a list of criteria that are necessary, preferred, and nice, as well as the appropriate zoning codes.
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So someone asked me recently why I've been posting a lot of kickstarters, indiegogo's, and other crowdfunding projects. The inherent assumption in their question was "why should I spend money on this?". While I was tempted to go into a long ramble about the economics of such things, and about how this allows a lot of projects to be aimed specifically at communities that would appreciate them that might otherwise be passed on by bigger companies, a far more basic reason struck me.

Fundamentally, in my mind, there are two ways to improve the world. The first, and, I will admit, more important in many ways, is to reduce harm. When we do disaster relief, when we try to reduce the pain in the world by stopping bad things from happening, when we try to relieve inequity and iniquity, we are making the world a better place.

However, the second way of making the world a better place is also important, and that is about increasing joy. While the amount of joy in the world is finite, the capacity for it is not. We can always create more joy. When I put on an event for a community, or when I put out a link for a crowdfunding project, or when I try to promote a project that someone is working on, my goal is to increase the joy in this world. And it is my hope that others join me, because the more joy we create, the better the world is.

This is a post I should have made a while back.

Every year, in accordance with Jewish tradition, between Rosh Hashanah and Yom Kippur, we are to make atonement with those we have wronged. The idea, which I approve of, is that while prayer and repentance can erase sins between one and one’s deity, forgiveness for out transgressions against other human beings can only be undone by the forgiveness of the humans we have wronged. Thus, each year, I ask forgiveness for those I have harmed, by word or by deed, intentionally or unintentionally, and in return, I forgive all those who have harmed me.

This year, I cannot do this. There are those who have hurt me, people who I trusted, who I cannot forgive, no matter how I try. There are those I hurt, whether intentionally or not, who I cannot ask for forgiveness from, because I truly do not regret my choices, my actions. In some cases, I wish I had hurt them more. Thus, I find myself in a bind. How does one forgive when one is still too full of rage to forgive? How does one ask for forgiveness when one does not wish forgiveness, not because one does not believe one does not deserve it, but because one does not wish for the forgiveness, only the pain, of the other? These thoughts will not leave my head, and thus, I do not know what to say for this year.

I will merely say, I hope all who read this are inscribed for a good year, and my prayer is this, for those who I am not full of rage at, know that I have nothing but love in my heart for you. For those for whom the rage is the only thing left, I pray that you make use of the services of a good proctologist, to remove the cranium from your rectal cavity.

7 years ago today, I got my new heart. It has been a wild and strange journey, and I am grateful to you all for being there with me.

Hello all,
( The Future of Dorian's Contained HereinCollapse )

Hello all!
So first off, this is not a health-related update! Yay! This is a thread about pursuing dreams, though.
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Thank you all in advance for reading this, and for being around for this amazing journey.
Best,

~Gil

So the clinic results are in, and they are mostly good.
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Anyway, that's the health and life update from Gil. Now tell me, how are *you* all doing?

So seven years ago, I had congestive heart failure, I'd bailed for the first time on a stage performance, and was feeling pretty craptastic about life. Thankfully, the hospital I was at at the time brought me a cake. A few days later, it thawed enough that we could eat it, and from what I recall, it was an excellent cake.

Seven years later, I'm stuck in a holding pattern, which is why I haven't been updating as frequently.

So I'm currently done with plan A of the special treatments. At the end of the month, I'm going in for a biopsy, echocardiogram, ecg, bloodwork, and a partridge in a pear tree. Shortly thereafter, I get my results, which will either be good or bad.

If they are bad, then we go to plan B, which is like plan A, but with more aggressive drugs with more fun side effects. If that doesn't work, we go to plan C, which is like Plan B, but even more so. If that doesn't work, the doctors get creative.

Needless to say, I'm hoping plan A works.

That said, if the results are good, it does not mean I'm out of the woods. It means that while my immune system will continue to be extra-compromised, in about five months, it will start coming back, and continue coming back for the six months after that, so I will need to be hyper vigilant. Again, there's a good way and a bad way for things to go.

The bad way means going to plan B, plan C, etc.

The good way means that I get to keep going on my current regimen of immunosupression, without any other changes. At that point, I am "back to normal", for whatever that means for me. It definitely means that I need to not strain myself as much as I have over the last year. I have been told in no uncertain terms that I need to relax more, or I will end up giving myself other problems. On the other hand, I've been reminded again that every moment I have is a bonus, and as such, I want to make every one count. That said, I'm going to be going ahead with my various projects, but probably modifying how I do them, and doing a lot more of that crazy thing called delegation.

In the meantime, I still get tired very easily, which means that I can't do as many things as I'd like, and I'm not online as much as I seem. I tend to leave my computer logged int to various accounts so I can use it as an "answering machine", but remember that I'm spending fewer hours on here, and it takes me a bit longer to respond to things. Please don't take it as a lack of love, it's just me trying to respect my own limitations a bit more than I have been doing.

That said,I'm hoping my next post, which will be coming fairly soon, will be full of exciting announcements about projects, events, and other fun things, rather than more health stuff.

With thanks and love,

~Gil

Hello all!

So, as I believe I mentioned before, I'm in here for a while. Two weeks inpatient, two weeks outpatient, and then 6-12 months to get back to normal, assuming *everything* works out right. A lot of people have asked what they can do for me, so this update is really about that.

First off, every comment, every post, every message, is being read. I unfortunately have very limited energy right now as my body goes through hell, but I promise I read and appreciate each and every message you all send, and I'm doing my best when possible to respond. That helps.

Second off, visiting. Those of you who can visit, are welcome to, and it's great, with three very big caveats.

CAVEAT THE FIRST. If you are sick in any way shape or form, or think you might be, or think you will be, please do not visit. My immune system is being shocked into non-existence, and even a passing infection may very well kill me. I mean this in all seriousness. I appreciate the love, just not the death.

CAVEAT THE SECOND. If you do visit, before entering whatever room I'm in, after touching anything, etc, use those funky gel dispensers on the walls on your hands. I realize they dry out your skin and smell awful, but again, I need to be super paranoid while my system recovers.

CAVEAT THE THIRD. I may pass out on you. It's not because I don't love you, but it's because I'm putting my body through hell to try to fix it. Please do not take it personally if I put the bed down and fall asleep, or if I fail to wake up. It doesn't mean I don't appreciate your visit, it means that I'm trying to take care of my physical health and respect my own limitations, something that I have in the past not been so good about.

On the financial side (and I hate doing this). It's likely that, even with my inusrance, this hospital stay is likely to wipe out what's left of my finances. I'll be making deals with the hospital, and doing what I can to set up payment plans. That said, it's still going to be a tough few months. I know a few people are doing donation drives, auctions, etc, for me, and I'm hoping that they'll pitch in on all the places this is cross-posted, so that if you have cash to spare, and want to send it this way, it will go to me. Now with that said, I have worked with this hospital before. Even if I have to set up something where I send them a monthly payment for twenty years, I will be able to eventually pay this off. Do not feel obligated, if you are currently under any form of financial stress, to chip in here. If you do, I'll obviously apprecaite it, but I will find a way to survive without it.

On the other financial side, I do have one of those annoying amazon wishlists. I was really using it as a "things I should remember to get around the house and books I keep forgetting to get" guide, so as such, it's not the most useful, but I will gladly take anything people send. I anticipate a rather lengthy recovery, and will also happily take suggestions for things to add, not even for people to get me, but for me to remember to check out myself when I'm in a better place. For those interested, it's at http://www.amazon.com/gp/registry/…

Finally, and in some ways, the most important, is my caregivers. This includes my partners, my family, my close friends, etc. If you know someone who's coming to see me regularly, who's helping me out, etc, see if they can use some help, some love, some support, etc. They're doing a lot to help keep me together through this difficult time, and this is not a time when I am able to reciprocate the work and attention they're putting into me, so I'm hoping that during this time, I can rely on others to help those who help me. They mean the world to me, and I appreciate anything that can be done to make their lives easier.

Again, thank you all for the outpouring of support and love. It has made the last few days infinitely easier to deal with.

With love and gratitude,

~Gil

Hello all!

First off, allow me to thank you all for all the love. It's been helping me get through a time that is remarkably tougher than what I'd ever wanted to face.

Now, to fill you all in, here is the course of events from my point of view.

For the last few months, I've been feeling tired. Now, because of the lifestyle I lead, which can clinically be defined as "Gil is a batshit crazy person who's going to work himself into an early grave and laugh the entire way", this was rather hard to quantify, but there were some warning signs. Sadly, none of them translated into anything medically relevant.

Fast forward to this past Tuesday night. After class, coming up from Market East Station, I was winded, badly, after one flight of stairs. Thinking that this was a bad thing, I called the clinic first thing Wednesday morning, and got an appointment for Thursday morning. That night, at Nocturne, I was totally fine.

Going through the tests on Thursday, the doctors found enough wrong with me to say "we gotta admit you right away", which was not what I was expecting (for comparison's sake, the last time I had a problem, they upped my prednisone for five days and I hit a creative peak like none other in my life).

Now we get to yesterday, Friday, and my day of relative silence. After some false negatives, some false positives, and one partial diagnosis that had me actively contemplating going into a surgery that would remove the rest of my organs and give them to other people needing them rather than ever going through the Hell that is waiting for a new heart ever again, we were able to identify what I was going through as a humoral rejection (because if I'm going to do it, it's gotta be funny, right? Right?).

So the plan now is this. Every couple days, I go through aphoresis, which is kind of like dialysis in that they remove my blood, clean it a bit, and throw it back into me, and then run me through IVIG. Then they will run me through another medicine that I forget the name of. Then I sit on my ass for two days. Then we rinse and repeat. This will be my life for the next two weeks. Following that, I will continue to see them for another two weeks on the outpatient side for two weeks (assuming everything has gone well).

In the meantime, well wishes are appreciated, visits are appreciated, etc. I don't know exactly when I'm available, but if you cannot get a direct hold of me, grab a hold of my family, my partners, my close friends, etc, who might know better what's going on.

With lots of love,

~Gil