Namav Abramovic (aka Nick Dupree) and I are dancing - turning in the graceful, flawless patterns of the slow waltz created by Second Life (SL) scripting genius Craig Altman. We are both, as is the custom in this grand, medieval-theme ballroom, dressed to the nines - billowing, frothy white skirts for me; a dark navy suit and tie with a colorful vest for him. All around us similarly attired ladies and gentlemen dip and sway to the tunes of Strauss, Haydn, and oddly enough Mariah Carey.
The contrast between this idyllic scene and Namav's first life is stark and more than a little disturbing. Thanks to Muscular Dystrophy (MD), he is all but paralyzed and uses a ventilator 24/7. The only part of his body he can still move is his left thumb, which he uses to manipulate a trackerball and an onscreen keyboard to function in SL. And function he does. Namav is nothing if not active here in SL. He founded the Open Gates Peer Support Community, which ensures that those with disabilities have someone to talk to 24/7, is a member of the Second Life Synagogue, and volunteers with Virtual Ability helping the disabled get into and function in SL. When he's not involved with one of these projects, he enjoys DJing for parties and role play sims such as Arabian Nights and Deadwood, where he is known as a camel trader extraordinaire.
Knowing these things about him, and watching his precise and skillful motions as he guides me across the dance floor, makes the news he has just shared even harder to take in. Namav and his brother (who is afflicted with the same condition) live with his mother and grandmother in Mobile, Alabama. Though the boys qualify for 24/7 care, the state covers only two of the three eight-hour shifts. The family is expected to provide the other. Trouble is, Namav's mother (a former fine arts professor), has firbomyalgia, and his grandmother has emphysema. Neither can work, which means the money required to pay for those two, eight-hour shifts simply isn't there. As a result, the two women have been covering the shifts themselves.
The news Namav shares with me today is that his grandmother had to be taken to the hospital with pneumonia and a-fib heart issues. He is struggling not only with concern over her well-being, but worry that his mother (who now has two shifts to cover each day) won't be able to manage, and fear for his own life. Patients on ventilators require constant and careful monitoring to ensure that the hoses don't blow (a common occurrence because of the pressure) or the electricity go off resulting in suffocation. Tragically, Namav has direct experience of this. His good friend Chris, who was also ventilator dependent, died in a nursing home when a nurse failed to notice the ventilator alarm.
In addition, both Namav and his brother require feeding, bathing, positioning, suctioning, and assistance going to the bathroom. You get the picture.
Listening - or rather watching as Namav's words slowly appear across my computer screen - I am struck not just by the enormity of the task his mother faces each and every day (Why isn't more help available?!), but by the stark contrast between Namav's physical condition and the strength, courage, and determination he brings to life. Far from feeling sorry for himself and accepting his plight, he has actively pursued an education, launched a sophisticated media campaign to change Medicaid policy in Alabama, and aches for an independent, active life. Here is a short excerpt from his blog:
"Few people really understand themselves, much less other people. Even fewer understand people on ventilators...A ventilator shouldn't be as mystified as it is. As I pointed out earlier, it is just a glorified bellows. But perhaps there is also a natural aversion to being around someone who lacks what is essential to being alive: breathing. In a sense, a poet Mark O'Brien pointed out, we are the undead. I am much like William Wordsworth wrote when he witnessed the first form of mechanical ventilation, the iron lung. I am a "traveler betwixt life and death."
Hesitantly, feeling like I am wading into unknown and touchy territory, I ask Namav what he wants, what would ease the frustration and longing he so clearly feels. This is what he said:
"Since I was 19, the visceral, inarguable longing to be protected has clashed with the visceral, inarguable evolutionary desire to break away from my family and establish an independent, vibrant life where I can begin my own. This urge can never be extinguished in me, no matter how severely humbled and crushed physically I am. But going off on one's own is, by definition, fraught with danger and inevitable errors. I have no margin for error -- if I'm not protected, I die, and die fast.
"I feel like a caged animal a lot of the time. I'm stuck, with nurses who are strictly medical, so there's not much I can do. I spend 98% of my life silent. Sleep, get online, eat, sleep. Lather, rinse, repeat. How am I doing? I'm a person who has so much to share....and that all those thoughts and feelings are trapped within for lack of an outlet is excruciating. If death is the soul leaving the body, then maybe I've felt a form of it, my soul migrating to the online world where it can find expression."
As the words end and the dance continues silent tears run down my cheeks. Surely there is a way to help Namav and others like him. Surely we, as a people and a country, have evolved to the point where we can see past the limitations to the gift of Namav's spirit. I think of Helen Keller and Stephen Hawkings, of Christopher Reeve and Michael J. Fox. I think of my quadraplegic friend Ellen, who taught me so much about laughter and forgiveness, about my friend's tiny son born with Prader Willy Syndrome whose smile can lighten the darkest days. What does it say about us if we cannot provide for, support, and yes cherish those who are not capable of being "productive" in the traditional sense? What is so frightening or disturbing about those who aren't perfect? What, I wonder, can I do to help?
