I’ve been thinking about my friend Chris a lot this week, especially in the days preceding and following March 4th, when the tragedy that took him happened.
When I was little, Chris was the bigger kid, both in age (four years older) and heft (kids with Duchenne Muscular Dystrophy—DMD, which I don’t have—tend to be heavy, seeming to keep their baby fat, plus, until the preteen years). He was the poster child for the Mobile MDA (Muscular Dystrophy Association). I’ve gone in-depth on this blog about what it was like being in the Mobile MDA in the 1980s before. There was really a sense that “I want to be involved in the MDA, I want my kids to be involved, and raise money for the MDA, so then when my child is older and in full decline and we need all the help we can get, the resources will be there.” Parent involvement in the MDA really was seen as an investment in your children’s future, so the feeling of betrayal was intense when the MDA of Mobile (transformed and unrecognizable as the community-engaged organization it was in 1980s) didn’t help Chris in his fight for survival or even note his death.
Chris and I really became friends as young adults, when he would hang out in my chat room (Disabled Teens Support Group) that I had set up as a safe space for people like us to share the unique challenges facing young people with disabilities. I ran the group on the Delphi Forums site, which was a very, very Web 1.0 platform that you could run chat rooms and message boards on. It was a clunky, antiquated tool, even at the time, and perhaps some of the language (“Disabled Teens”) was antiquated too, but we got a lot out of it. Chris and I shared a deep context of what it means to be a young, vent-dependent man in South Alabama, the very real challenges, threats, and pain involved, and a lot of those basics could go unsaid; that, in-and-of-itself, was very freeing. He was also the only other vent-dependent friend I had outside the home that was close enough (South Mobile) to see in person. I was at one of his birthday parties; an old guy in the neighborhood called the police about the loud rock music.
Chris had a mohawk, so dark red it was almost black. He loved metal. Especially metal performed by scantily-clad women. For him, you’re either 100% extreme, balls out, hardcore, or you’re wimpy (though he used much harsher terms than wimpy). So, he tended to see me as soft and decidedly un-metal, though he developed a deep respect for my work overturning Alabama Medicaid’s age 21 cut-off, or as he put it, “kicking ass.”
Chris, with his mohawk and gaunt, angular appearance, looked metal; he’d have been perfect for the glossy cover of a metal album. And it all fit. It fit as one of the only reasonable reactions to the unreasonable policy realities in the Deep South that yank all support and shove people with disabilities and their families to tiptoe a high-wire without a safety net. And it definitely fit his hardcore words, hardcore music, hardcore aesthetic. What’s more hardcore than life on a ventilator? What’s more extreme, more on the razor’s edge, than being in your face, rocking all over Mobile County, despite being on life support? And what’s more American than saying “f**k nature, the hell with the odds, I’m here, I’m on a vent, and I won’t give up.” To me and his friends, Chris was this amazing, punk rock “only in America” kind of figure. His death was a horrible loss.
Chris was also an incredible writer; I’ve never known anyone as good as him when it comes to short fiction. He once shared one of his short stories with me, about a Viking “berzerker” warrior. His chatting with my group on the Delphi Forums, led to him participating in other Delphi communities, RPG groups, where what he was really doing was writing a novel with others. Brilliant writing!! I wish it could’ve been properly compiled and published at that time.
Though this writing on Delphi, he met a young woman in Northern Alabama who he grew to love. Chris never let anyone neuter or infantilize him for a second; his passion for women was as hardcore as everything else about him. It’s awful that he never met this girl he loved and that overall, he never could get in-person reciprocal feeling from Alabama’s female half. Like me, he ultimately got the cold shoulder from every girl he met in Alabama.
In an email about sharing his feelings with the aforementioned girl, he wrote: “If you have a dream, or something you need to say, or to let out, don’t hesitate, don’t let go of that opportunity, it may never come again.”
The only extant piece on the web about Chris’ death is this, from Inclusion Daily News: Alabama Medicaid Policy Blamed For Friend’s Death (thank you Dave Reynolds for keeping this article available nine years in; I will keep it accessible from the front page sidebar of this blog in perpetuity.) Chris’ goals in life were like anyone’s, to survive, find his niche, and thrive. His parents did everything humanly possible to help him keep going, in sports terms, “they left it all on the field.” But they were put in an impossible situation by Alabama Medicaid’s policies, which ended most in-home care for recipients at age 21, knocking them down to about 12 hours of nursing care per week, apparently with the idea that the family could provide coverage without sleep for the rest of the week 24 hours a day. No human being can do that forever, though Chris’ family and friends tried, and kept it going for five years without Chris even being hospitalized. But it’s one of those probability things, Medicaid put them in a situation without care, where it is likely that eventually, a ventilator tube disconnection event would coincide with a time his mom went to the store and only one parent was present, and too asleep to respond given the exhaustion of the care every day. That tube disconnection meant… suffocating until brain dead. His parents shouldn’t blame themselves for the impossible situation Alabama Medicaid put them in. They never should’ve been thrust into that situation; if he weren’t in Alabama, it’s likely he would’ve received some care hours each day that would have enabled his mom to leave the home for supplies with peace of mind.
There’s a lot of blame to go around, but I think Alabama Medicaid should get the brunt of it for “just following orders,” mailing out termination notices with one line, “PDN (private duty nursing) to terminate after [xx.xx.xxxx]” (the person’s 21st birthday) and phoning nursing agencies to ensure they know no hours can be billed after that date, without ever ruminating on the barbarism of their actions or considering solutions. Part of the blame goes to the several Alabama politicians who ignored numerous pleas for help from Chris and his family. And, of course, the MDA ignored their cries for help when they could’ve helped Chris’ parents organize daily volunteers, or assisted somehow, large or small.
And I feel like part of the blame goes to me. Chris died after my “victory” over the 21 cut-off in February 2003, which set up a new program for vent-dependent, or in their terms, “technology assisted,” Alabamians who are “aging out” at 21. This program made the 21 cut-off, at least where ventboys are concerned, a thing of the past in Alabama, making my home state an island of relative sanity in a sea of Deep South states (including Florida) that continue to essentially shove their most vulnerable off a cliff just for turning 21, even now in 2013. But the “technology assisted” waiver I got started had no provision for grandfathering in people like Chris, cut off five years prior to the advent of the TA waiver. I never felt less victorious than the day Chris reacted to the fact that my “victory” meant no change for him. I made sure local news channel 15 knew about Chris’ situation; they did a significant feature on him about six months before his death. But I feel guilt that I didn’t launch a national effort for awareness and I didn’t push harder to involve lawyers. I also don’t understand the premise that I survive and he doesn’t.
I need to get back in the fight. Unless I’m actively fighting so similar tragedies don’t happen again, I don’t feel like I’ve found my niche. For 2013, this book I’m writing, this memoir/exposé, is like the “tip of the spear” of my new campaign on Medicaid 21-cut-off, with the focus on vent users. The vent-dependent population can’t afford to be invisible anymore.
Nick