Questions & Answers
2001— New York City
On Survival
“My sense of anger and sadness is already pretty paralyzing.” / “I’d love to find mountaintop retreat or somewhere by the sea for a few months to let my mind and soul heal.”
It’s hard to read this and not wonder if you just didn’t get the space/time to heal after 9/11. Do you think that you did manage to heal? Or did that only come later? (Or not at all?)
Ah ... I’ll touch on this here, and I’d like to talk about this with you on video in real time.
After the event, there was no time for reflection or healing; none was offered, the opposite was encouraged (“So what? Get over it!” my brother shouted at me the day after I came back from my first return to my apartment and I’d mentioned that thousands of people some of whom I knew had been slaughtered just blocks from my front door), and I was so shell-shocked and desperately homeless for years that by the time I even thought healing would be possible, a lot of scar tissue had already grown, obscuring much of what should have been addressed.
I fell through a lot of cracks, and ended up so heavily medicated that I couldn’t really think clearly for more than nine years; all well-intentioned, or most was, but I have to remind myself that, as more than one practitioner said in so many words, no one knew how to treat me. There was no real protocol for us, and certainly not for me. Fewer than 5,000 people in the world have the particular flavor of PTSD that the CDC has disagnosed me with, and standard treatment protocols proved ineffective for years. It’s only since last May that the World Trade Center Health Program was able to hook me up with PTSD therapy, and it’s been smashingly effective. I just wish it hadn’t taken a generation to happen.
There’s also the question of exactly what it is I’m healing from. I look inward and push and probe, but how does one heal from a generation-defining global cataclysm that just happened to take place in one’s neighborhood? How do you heal from a transformation?
Maybe a more apt approach would be something like, How have I reckoned with the creature that I got transformed into? What do I see rewritten in the mirror? And, as Ram Dass said, “How then shall we live?”
I feel that only now am I truly accepting what happened to me, and how I have become something new, and how in some way I’m arriving at the same place I might have arrived at had I not been touched by the events of that day. It has taken me all these years to develop the suite of skills, experiences, received and accrued wisdom, seasoning and scar tissue, and weight of history, to finally be able to fulfill my life’s work of making a positive and lasting difference in this world and in the world of art and justice by the free and full expression of thought and vision.
Nothing held back, no holds barred, by every means necessary, do all that one human can do, send the hailing frequencies forth like Whitman’s noiseless patient spider, cycles per second launched into the eternal reach of space seeking a transceiver, endlessly reeling them, howl without ceasing.
Do you relate your surviving of 9/11 with your surviving of AIDS?
Only in this way: “I survived AIDS and 9/11, I’ll survive this bullshit too.” I’ve never really linked the two, because they were consecutive, not concurrent. Surviving 9/11 has been intensified by my AIDS and has heightened my concern about ultimately being vulnerable to the long-term effects of my exposure in the WTC Disaster Area; this is why I get a WTC physical every year with special attention paid to lung function, cancer manifestations, and other known issues that continue to reveal themselves among the survivor cohort.
Are these survivals different for you, or similar?
They are different. Surviving AIDS was not a solo struggle in the way surviving 9/11 has been. There were and are far more people with HIV/AIDS than there are 9/11 survivors, and there is precious little overlap between the two. The years following 9/11 were a nightmare regarding my AIDS treatment, and you can add my survival and continued good health to the list of miracles that accompanies the story of my life. Today, I take exactly one pill once a day for HIV control, and that’s by choice: I could take a bi-monthly shot in lieu of that, and I expect I’ve got a shot at living long enough to see a cure. The only cure for 9/11 is to live.
Do you consider that this double-dose of surviving had an impact on your decision to leave your art work for those years? (I am wondering here about PTSD and how single traumas are less complex to process, but multiple traumas layered up without enough processing time, can become stuck, or compounded ...)
This is one for us to address in conversation, I think. I did at one point deliberately turn my back on music and art, in 2015, and that estrangement lasted six and one-half years. Let’s talk.
What happened to your work contracts post 9/11? “Jesus, I’m running up debts as soon as they invent them now.” Were you still working with the tech contracts?
I tried, and worked sporadically and infrequently for about a year (we’re talking hours per month, not week, and there weren’t many), but contracts went away for a long time, and I didn’t find tech work again until 2004, on and off, mostly off, until 2009. It was hard as fuck. Nothing seemed to stick, and the marriage ended at least five contracts due to my husband’s psychosis. In 2009, I was outed as gay and AIDS at a high-level Microsoft gig outside Washington, D.C., was fired and blacklisted from the top of Microsoft for a decade, costing me more than $2 million in lost wages alone. It’s only since 2021 that I’ve been welcomed back into the fold – just in time for the biggest tech slowdown in the history of the Internet.
A six-week contract at my usual wage would not only pay my entire year’s travel and lodging budget to Berlin, it would also defray at least half of the projected funding cost for N&TSS. Christo and Jeanne-Claude never took public money or private funding: they sold models of their proposed work to finance the works themselves. (That’s the myth, anyway, and I should look it up.) Please keep that in mind as we envision the future. I’ve never minded financing my shows; sometimes I even made some money back!
It’s hard to read this and not wonder if you just didn’t get the space/time to heal after 9/11. Do you think that you did manage to heal? Or did that only come later? (Or not at all?)
Ah ... I’ll touch on this here, and I’d like to talk about this with you on video in real time.
After the event, there was no time for reflection or healing; none was offered, the opposite was encouraged (“So what? Get over it!” my brother shouted at me the day after I came back from my first return to my apartment and I’d mentioned that thousands of people some of whom I knew had been slaughtered just blocks from my front door), and I was so shell-shocked and desperately homeless for years that by the time I even thought healing would be possible, a lot of scar tissue had already grown, obscuring much of what should have been addressed.
I fell through a lot of cracks, and ended up so heavily medicated that I couldn’t really think clearly for more than nine years; all well-intentioned, or most was, but I have to remind myself that, as more than one practitioner said in so many words, no one knew how to treat me. There was no real protocol for us, and certainly not for me. Fewer than 5,000 people in the world have the particular flavor of PTSD that the CDC has disagnosed me with, and standard treatment protocols proved ineffective for years. It’s only since last May that the World Trade Center Health Program was able to hook me up with PTSD therapy, and it’s been smashingly effective. I just wish it hadn’t taken a generation to happen.
There’s also the question of exactly what it is I’m healing from. I look inward and push and probe, but how does one heal from a generation-defining global cataclysm that just happened to take place in one’s neighborhood? How do you heal from a transformation?
Maybe a more apt approach would be something like, How have I reckoned with the creature that I got transformed into? What do I see rewritten in the mirror? And, as Ram Dass said, “How then shall we live?”
I feel that only now am I truly accepting what happened to me, and how I have become something new, and how in some way I’m arriving at the same place I might have arrived at had I not been touched by the events of that day. It has taken me all these years to develop the suite of skills, experiences, received and accrued wisdom, seasoning and scar tissue, and weight of history, to finally be able to fulfill my life’s work of making a positive and lasting difference in this world and in the world of art and justice by the free and full expression of thought and vision.
Nothing held back, no holds barred, by every means necessary, do all that one human can do, send the hailing frequencies forth like Whitman’s noiseless patient spider, cycles per second launched into the eternal reach of space seeking a transceiver, endlessly reeling them, howl without ceasing.
Do you relate your surviving of 9/11 with your surviving of AIDS?
Only in this way: “I survived AIDS and 9/11, I’ll survive this bullshit too.” I’ve never really linked the two, because they were consecutive, not concurrent. Surviving 9/11 has been intensified by my AIDS and has heightened my concern about ultimately being vulnerable to the long-term effects of my exposure in the WTC Disaster Area; this is why I get a WTC physical every year with special attention paid to lung function, cancer manifestations, and other known issues that continue to reveal themselves among the survivor cohort.
Are these survivals different for you, or similar?
They are different. Surviving AIDS was not a solo struggle in the way surviving 9/11 has been. There were and are far more people with HIV/AIDS than there are 9/11 survivors, and there is precious little overlap between the two. The years following 9/11 were a nightmare regarding my AIDS treatment, and you can add my survival and continued good health to the list of miracles that accompanies the story of my life. Today, I take exactly one pill once a day for HIV control, and that’s by choice: I could take a bi-monthly shot in lieu of that, and I expect I’ve got a shot at living long enough to see a cure. The only cure for 9/11 is to live.
Do you consider that this double-dose of surviving had an impact on your decision to leave your art work for those years? (I am wondering here about PTSD and how single traumas are less complex to process, but multiple traumas layered up without enough processing time, can become stuck, or compounded ...)
This is one for us to address in conversation, I think. I did at one point deliberately turn my back on music and art, in 2015, and that estrangement lasted six and one-half years. Let’s talk.
What happened to your work contracts post 9/11? “Jesus, I’m running up debts as soon as they invent them now.” Were you still working with the tech contracts?
I tried, and worked sporadically and infrequently for about a year (we’re talking hours per month, not week, and there weren’t many), but contracts went away for a long time, and I didn’t find tech work again until 2004, on and off, mostly off, until 2009. It was hard as fuck. Nothing seemed to stick, and the marriage ended at least five contracts due to my husband’s psychosis. In 2009, I was outed as gay and AIDS at a high-level Microsoft gig outside Washington, D.C., was fired and blacklisted from the top of Microsoft for a decade, costing me more than $2 million in lost wages alone. It’s only since 2021 that I’ve been welcomed back into the fold – just in time for the biggest tech slowdown in the history of the Internet.
A six-week contract at my usual wage would not only pay my entire year’s travel and lodging budget to Berlin, it would also defray at least half of the projected funding cost for N&TSS. Christo and Jeanne-Claude never took public money or private funding: they sold models of their proposed work to finance the works themselves. (That’s the myth, anyway, and I should look it up.) Please keep that in mind as we envision the future. I’ve never minded financing my shows; sometimes I even made some money back!