At the risk of sounding dramatic, the world as we know it may very well be coming to an end - at least as far as that world involves specific HIV/AIDS-funded programs and benefits. The full enactment of the Affordable Care Act will result in serious shifts in funding as the majority of Ryan White eligible recipients will come to fall squarely within the realm of new Medicaid beneficiaries. And the ACA sets up provisions for care management of chronic illnesses in a way that currently is not seen much outside the world of HIV/AIDS and perhaps more limitedly in cancer care. Such emphasis of care management suggests a shift not only in funding but in institutional purview that could threaten the current dominance of AIDS Service Organizations (ASO) for offering medical case management to those with HIV/AIDS. ASOs nationwide are aware of this and are/have been trying to figure out what their next steps into this new world should be.
Evergreen AIDS Foundation (EAF) is in the same boat. Searching for toe-holds, trying to predict the perfect niche where the experience and expertise of a small non-profit could successfully compete with the more-than-likely corporate run behemoths that will soon take over care management of chronic illnesses, EAF is trying to predict its place in this new future. And all the while it is struggling with these "coulds", it wrestles with the no less powerful or difficult "shoulds". What should we become? What is our responsibility to our clients? To our communities? To our employees? It is enough, I promise, to give one a profound headache - with a bit of heartache thrown in for good measure.
For no matter what occurs - determined by plan or providence - change is inevitable. The kind of change that suggests a death of sorts, and possibly a true end to the agency overall. I would caution that that truth not be left out of this equation. As the tidal wave of possibility comes crashing over us, it is paramount to keep in mind that this agency of more than a quarter century could go out of existence. We must know that, own that, or we risk being swept away, no longer the captains of our own fate.
In thinking of the importance of remaining fully engaged in our destiny, I am reminded of the death of a lovely young woman who, because of the refusal of those around her to allow the fact of her dying to be named, to come into being, they perhaps prevented her from owning and directing this most important leg of her thirty-some year journey.
I knew she was dying. I went to visit her in the nursing home that served as step one down the too short ladder from her independent, relatively youthful, still rebellious thirty-something self to final hours in a benignly decorated hospice house. The steps in between being frantic midnight romps in speeding emergency vehicles that she would not remember and torturous days in yellow smelling hospital rooms covered in tubes and sweat, seesawing painfully between hope and reality.
That nursing home had long corridors of rose-covered carpets that muffled the slap of walkers and canes and spoke distinctly of the average age of the residents. I remember she wore her hair choppy, edgy, with deep ribbons of rock star purple, punk pink. I clung to those colors - lifelines to possibility. But the face beneath the edgy cut spoke the truth. She was hugely swollen, her body filling repeatedly with the fluids her organs could no longer contend with. She was drowning from the inside out; the slow constant rise washing most cruelly through her mind, creating confusion and important gaps in her memory.
We talked about the county fair that was coming. There were advertisements on the walls of the visiting room where we were sitting. Would she attend?, I'd asked, like a fool. "Perhaps," she answered; she was considering it.
I didn't want to be the first one who said the words. You are dying. You are going to die. The end is coming near. Like the game, Taboo, we walked around it. In circles, in curves, in curlicues.
I assumed the doctor would have the conversation. Should have the conversation. I believe the doctor assumed the hospitalists would. But they were barely invested and too focused on the stopwatch care of their Nascar-like rounds. Ninety seconds to greet, read the notes, check the most recent vitals, nod in sympathy, state their plans for tomorrow's collaboration and bow out. And doctors are trained to heal, to fix. Their goal is to extend life and to avoid death.
So we stayed focused on the moment we were in and we rode the ride.
A ride that she no longer had control of. Three decades of rebellious independence terminating in blind corners, fun-house mirrors distorting the reality of even the simplest of images.
Fortunately, it’s been a while since death was a regular part of this business. The agency's beginnings however - so often written - were of friends helping friends die with dignity. This is the ground on which the agency was built and although I was not around then, I must believe that those lessons remain learned and those skills remain reliable. Perhaps it is time to tap back into those skills, circle round a table as friends and seriously consider every possibility, including that of a self-directed exit.
I entered this picture fairly long after the miracles of medications were already being realized and the transition from inevitable departure to long term chronic condition had been made. The event I described above had roots in a different illness, as we see sometimes, of course, across the hundreds of people we serve. But I've heard the stories of our beginnings. Of those friends helping friends. I've met many of the people who were there from day one, or day thirty or six hundred ninety seven. The loved ones, friends, neighbors who held hands and wiped brows, cleaned messes, made meals, and offered that range of actions and emotions that are the hallmark of basic human decency. They created this agency and its mission of fostering a healthy hopeful community response to HIV and AIDS.
And now we're here. 2012. Facing unknown but inevitable and very likely big and important changes in the next few years. The Affordable Care Act jumped another hurdle with the Supreme Court ruling in June. Millions of Americans will (hopefully) be newly insured through Medicaid - the majority of our clients among them. The Ryan White Care Act sunsets next year with unknown consequences. Professional helpers, such as us, are scrambling nation-wide to figure out who they are, who they can be, who they wish to become. We're no different. We are doing just as much scrambling.
The way I see it, we can transition to an afterlife, continuing as an HIV agency in this new heavenly realm of the federally insured. We'll leave our substantive selves behind, streamlining into something less practical, more idealistic.
Or we can opt for reincarnation. Find a new niche. Build on our years of experience and our knowledge to grow into something similar but different. Probably bigger in the sense of both numbers served and illness experted.
Perhaps we can even do some kind of combo, casting our net as wide as possible; standing in front of every door that might possibly lead to the promised land of continued purpose and ongoing income.
Or we can let the end come. We can celebrate the many victories of twenty-seven plus years, remember fondly the many many people who've been part of this agency, throw ourselves a damned fine party and embrace our death with dignity.
But whatever we - the Board of Directors, the staff, our communities - decide, it will include a death of some sort. Whether that death leads to something new or simply to an end, we must acknowledge the dying in order to truly own the process and the outcome. We cannot sit back and expect others to name it for us. I am not calling today for one plan over another. I am asking that we walk into our future knowingly, with nothing left unsaid - no regrets. And I acknowledge that all are viable options, even that of a graceful end, eulogy self written.
