by Jim Andrews

illie Niss had battles to face with illness almost all her life that led to her far too early death at the age of 36. The 111 photos of her, from birth till near the time of her passing on November 29, 2009, together with the links to her net art and writings by others about her, show you something of her life, the nature of her struggles, her joys, interests, and especially her resilience and humour in the face of difficulties that only those close to her really understood. I didn't, I'm sad to say.

Martha Deed, Millie's mother and collaborator in net art projects, put together these 111 photos and the accompanying notes on each photo. Some of the later photos, which show, for instance, painful skin lesions Millie experienced during Behcet's flares, are hard to look at, and Martha and I discussed the matter of whether Millie would want these photos to be public. Millie defined herself as an artist and the photos in question were always taken either by Millie herself or by her mother at Millie's insistence. Her attitude was that an artist documents her life. Here, for instance, is what Millie wrote to Regina Célia Pinto on November 21st, eight days before her death, via email:

I am very happy to get your emails, especially the ones with photos because I have nothing to look at here...

I love your images for Erewhon and plan on posting them tomorrow on the Erewhon Blog, if I am able to using my Linux Eee...which I should be. Otherwise I will get Martha to help... Then I can post to Webartery & announce our first user contribution!

I would like very much to make 4 more alphas. I may have to use old photos (like I did for the first 6 anyway) because the hospital has a "no photos" rule which annoys me. I do not want photos of other patients (a privacy problem), I want photos of ME and all the machines etc.

I am a new media "artist" (I hate to claim to be an "artist" normally but I don't know how else to say it), and they are stopping me from making media...which is what I do...

I doubt they have been in this exact situation before, where the patient wants to take photos for "artistic" reasons rather than to gather evidence against the hospital or take sad photos of a dying relative (which should be allowed also!)...

Her attitude was that it was her life, she was not ashamed of it, and it was central to her work as an artist. Particularly as she became more disabled and her life was what was left to her to work with as an artist.

She passed away from complications arising from H1N1, the Swine Flu, in the Intensive Care Unit at Millard Suburban Hospital in Amherst, NY, where she had spent four weeks battling the Swine Flu. In an email to the Webartery list (which Millie co-moderated) announcing Millie's passing, Martha mentioned something of the nature of that battle:

She suffered many setbacks including potentially permanent paralysis from the chest down, intermittent vision impairment, staph aureus MRSA pneumonia and sepsis, and respiratory and cardiac collapses. Not once, did she complain about what life was dealing her. Her focus was on survival throughout this ordeal.

We, her family, feel privileged that she was with us as long as she was.

Her passing was the culmination of health issues that had plagued her through her life. In her art, some of her experiences with health care in the USA are somewhat humourously documented, particularly in the adventures of her cartoon character Spork the Schizophrenic Skua. Spork is such an oddball, but a sport. That brain looks inflamed. Or is it rude? Rude in a very funny way. Because it isn't just rude but complexly psychological though graphically simple and comic. Her graphical work with Spork and his/her adventures is some of Millie's most memorable work, I feel. You'll never forget what Spork looks like and that thing on his/her head. Part “antenna”, psychic transmitter/receiver, part geek banner/freak flag, part inflamed brain or phallus, it's just not something you're going to forget. Here is an email I received from Martha about Spork and also our conversation about including some of the harder photos of Millie. Martha also gives a helpful indication of Millie's illnesses. Referring to the above quote from Millie about taking photos in the ICU, Martha says:

It is because of this email, that I sent those images on to you. And -- thinking about it -- when Millie was diagnosed as bipolar, she wanted everyone to know, and she created very explicit work that laid it all out, sometimes in uncomfortable ways. And then -- it turned out to be a total misdiagnosis. She wasn't bipolar; she had the early stages of Behcets, and the medications given for her "depression" actually caused her mental state to deteriorate -- and also contributed mightily to the Secondary Cushings Disease [an adrenal gland disorder caused by steroid use which causes “moon face,”severe obesity, bone-thinning and fractures, and many other life-threatening complications] that she developed. Once she got off all the medications -- very carefully and under medical supervision all the way -- despite her worsening illness, she was not mentally ill -- at all. The only problems she had were related to sudden ups and downs on steroids -- these sudden dose changes were necessitated by Behcets flares.

We had some conversations about her publicizing an illness that was actually not there. Her take was that being labeled as mentally-ill gave her an experience and understanding of mental illness that she never would have had otherwise. I, frankly, was surprised that she came through all of that as unscathed as she was. She definitely suffered flashbacks from some of the cruelty she encountered in hospital settings, but somehow, all of that receded over time. She never lost her acute awareness of how tough it is to be mentally-ill in U.S. society (I hope Canada is kinder), and this was one of the reasons why she maintained all of her Spork projects, even extending them as recently as New Year's 2008.

All of us were very attached to Spork anyway. Couldn't have given him up, and Millie wasn't about to. But if she had lived, Spork might have acquired new layers of complexity. . .

By the same token, her experience -- and she soon learned from a Behcets listserve that it was not unique to her -- with being disfigured and disabled in a society that equates personal worth with beauty -- was something she wanted people to know about and to experience with her. There were photographs that she took only for doctors -- of terrible and painful wounds in places normally covered with clothing. Those are quite different from the images I sent you. In fact, the ones I sent you are all images (except for the letterboard photos) that she herself prepared and distributed somewhat publicly to friends, relatives -- and I think many of them were on the microblog. So -- this was my thinking in sending them to you.

Also, you might want to take a look at the graphics she did for the microblog on October 3, 2009. She was contemplating seeing people who had met her before she became so disfigured, and she was figuring out what she wanted to tell them.

She wanted people to know that Behcets is an illness that is hard and ugly and very difficult to endure -- and she wanted people to know that she endured all of that and still functioned as an artist and a writer.

The email I quoted was written less than a day before she lost all ability to communicate (overtaken with sepsis MRSA) -- and yet, there she was -- clear as a bell.

In the ICU, she worked nearly every day using her Linux Eee, she had me post photos of her pre-Behcets self on the bulletin board in her room, she had many conversations with medical people about her fatness and its causes. She actually gained weight in the ICU, nearly a pound a day, and -- once people saw the photos, saw her working, saw her lack of any complaint about her circumstances (this blew my mind, too), she made a profound impression on the people around her. And many of her caretakers began comforting her for the weight gain, especially as they saw it happening in front of them -- while she was on a naso-gastric tube and getting 38 calories an hour (when the tube worked). People would come to see her from other units. After she died, I found email exchanges that she had with some staff members. It was amazing. Her Alpha page for Regina came up on line while Millie was in the ICU -- she did the finishing touches on it via corresponding with Regina while in the ICU -- and people were frankly astonished that someone who was intubated and paralyzed from the chest down (complication of the swine flu) was actually working and getting work published while on the ICU.

One of the nurse supervisors, Tom, was on the team that resuscitated Millie a couple of times, including the night she died. He came to me afterwards and said he will never forget her, because she came out of one code (two weeks earlier) and gestured for her notebook, then wrote him notes about what medications she should not be given -- as they were wheeling her into the ICU. He had visited her several times afterwards, because she was so full-spirited despite her circumstances.

For Millie, I think the images are a way of saying: Here I am. Look at this. See how difficult life can be. But I am still Millie.

Given Millie's email along with the posts she did for the microblog in October, and given that these images were all processed and used by Millie in some way, I feel confident that she would have wanted them used.

I first met Millie online through the Webartery list, which I started and which she later co-moderated. Her correspondence on the list was always intelligent, perceptive, and sensitive concerning all matters, really. Not in the least crazy. Quite the contrary. I met her in person for the first time in Buffalo NY in 2001 at the first E-Poetry conference. She arrived on the second or third day of the conference. I wasn't sure if she was going to be there or not. And I didn't know it was her sitting alone in the audience just prior to a talk by a poet about computers and poetry. I sat beside her and we met and whispered together a bit during the talk. At one point, the speaker announced that, in the future, computers would write our poetry for us. "What do you think of that?" I whispered to her. She thought about it with the sort of smile you see in many of the photos, a smile of whimsical delight and deep curiosity, and replied "I think it would be like getting computers to eat our food for us: we could do it, but why would we want to?"

Thus I met Millie in the flesh. We met again in Nottingham in 2004 at the trAce writing conference and also a day later in London where we went to the Tate Modern together with Chris Joseph and had dinner with Elizabeth James at her flat. Millie showed me her work in Rachel Greene's book Internet Art in the Tate bookstore. She was, by then, doing quite well with her art. She was getting it published, people were writing about it, and she was producing it intensively with full gusto. She was trained at Columbia University in Mathematics and Physics, Computer Science and also studied Literature and Creative Writing at length. She was every inch an intellectual and artist. And well-suited in the nature of her education to net art, which demands both technical and sometimes even mathematical expertise as well as real artistic ambition and ability.

We met a third time in Rochester NY in 2003 when she and Martha traveled from Buffalo to attend a talk I gave at the Rochester Institute of Technology. After the talk, we went to a restaurant. Millie felt ill. I had another talk to do that day, and they wanted to stay, but Millie was feeling quite ill, so after our visit, they returned to Buffalo. The next day, Millie ended up in the ER and eventually on the acute coronary care unit for several days because of some as yet undiagnosed cardiac event.

But, for all that, and our correspondence, I didn't have a sense of the nature of her illnesses. Spork draws on Millie's experience in the health care system, but Millie was a woman of great empathy for the plight of others in that system, and it was clear Millie herself was not schizophrenic or the least bit crazy. She also did quite a bit of volunteer work helping the mentally ill. I heard more from her concerning that work, and the plight of others, than I did about her own conditions. She really soldiered on with quiet courage and a strong ability to enjoy what was there for her to enjoy, it seems to me.

I think one of the funniest pieces she did was the "horse-fuck rock" story she wrote. She never developed this any further, as far as I know. She could have sold millions of that sort of thing. Maybe it was her Kubla Kahn. Or, more likely, it just wasn't her sort of serious, though whimsical, work. In “horse-fuck rock”, we're laughing at the characters. In Millie's main works, if we're laughing at somebody, such as Spork, it's also a laughing with them. Her sense of humour was just not at the expense of others. She was probably too familiar with the other side of that sort of sense of humour. But, also, she herself was too kind and funny to sustain that sort of thing, possibly, though she could be as witty as anyone if she wanted to.

I think what she really enjoyed doing was creating interesting literary net art where she could put together her interests in programming, math, and the literary. My favorite piece of her work of this nature is Oulipoems, which Martha also worked on with Millie. The piece is published on various sites including the Iowa Review and the Electronic Literature Organization.

The OULIPO is a long-lived French literary endeavor that began in 1960. Millie was born in New York City, and moved to France when she was four months old; French was her first language. Her family returned to New York City when she was two-and-a-half. But she retained her French. And the OULIPO is the seminal literary movement involving synthesis of mathematics and the literary. So, in the Oulipoems, Millie puts together many things in her life.

She also occasionally did translations into French; she helped me by translating Helen Thorington's introduction to the Paris Connection project. Another poet from the Webartery list, Ana Maria Uribe, translated the Paris Connection project into Spanish. Ana Maria passed away in 2003. And David Daniels, another of the Webartery artists, passed away last year.

Millie and Regina Célia Pinto from Rio, another Webartery artist, were strong friends. Regina visited Millie and Martha in the USA, and Millie participated in several of Regina's online net art projects such as “AlphaAlpha”. This is the last published work by Millie that I am aware of.

Edward Picot, who also is involved in Webartery, and whom Millie (and I) met in 2004 in Nottingham, has written about Millie's art at length in “Not-so-silly Milly: An Appreciation of Millie Niss”. Earlier writing by him about Millie's work is in Regina's newsletter, and this includes correspondence between Millie and Edward.

Millie died too soon, but the way she lived, created art—and simply the person she was—is inspiring. She was dogged with ill health all her life, and misdiagnoses that spiraled the problems, a nightmare of ill health and unfortunate health care, really, it seems to me, looking from the outside, but she made the best of it and leaves us with some distinctive writing and net art.

In writing the software for the slideshow and putting together the photos of Millie from Martha Deed, Millie's mother, friend, and collaborator in art, I must have looked at that series of photos a hundred times. It is hard to get a sense of anybody's life, and of who they really were and of their trials and achievements. But I am honored that Martha would trust me with these pictures, for they are very dear ones to her. Millie was her only child. And I must say I find the photos very moving. They show me Millies of whom I was unaware. And something of her travels. And trials. And her determination to create art even in difficult circumstances. And her delightful smile and sense of humour, which I also knew from our meetings. I am grateful to have known Millie Niss and to have participated with her in Webartery and the beginnings of web art, something that drew us together in delight and passion for art, literature, programming, and mathematics. I miss you, Millie Niss.