This past week was tough. We made the turn back from Korea on Sunday (don’t get me started on the TSA’s incompetence at O’Hare), and we dove back into Central Standard Time with a vengeance. With an ALS research presentation on Tuesday night, and a program on college readiness sponsored by my university at the Minneapolis Urban League, I’ve been sucking air all week. And in spite of my efforts to try to stay ahead, it has definitely been a week where behind has been the name of the game. Everyone has heard the saying, “Time to face the music,” and in a weird kind of way, I found myself, particularly in these evening events, to be facing my own new tunes of dis ease. But I have to tell you, that these new songs are just not that well written, and they could use some improvement.
Let me start with the ALS research presentation by ALS Therapy Development Institute (ALS TDI). I wasn’t expecting much, and on some levels, I wasn’t disappointed. It would be so nice to report that a cure is imminent, that drug therapies beyond Riluzole are available, and that everyone in the ALS world is working with everyone else to find some meaningful treatments for this syndrome. Unfortunately, this I cannot do. While the TDI model is quite impressive, it is a small piece of a little pie. Their yearly budget is 10 million dollars, and they seem to squeeze a lot out of that small amount. They maximaze their dollars through focus. They aren’t interested in cause, nor are they interested in palliative care. They are only interested in developing treatments that will manage this dis ease.
Significantly, there was no one at this meeting from the ALS Association, one of the big dogs in ALS research and care. When I asked why, here was the answer: “We are all vying for the same resources, and we just don’t seem to work together in this endeavor.” It is unfortunate, but the way of research and research funding in a capitalist society is about who gets attention, and who can out-compete the other. And rather than one concerted effort, organized from cause, to treatment, to palliative care, to cure, there is effort against effort, with little coordination. I admit, it was depressing, but it also offered clarity.
As most of you know, I am a musician, a choral musician to be precise. Oh how I miss my choral life, with singers striving for that beautiful moment when the phrasing is just right, when the energy of the line sings from your soul, and when there is just a fleeting moment when the face of God appears and light shines in the room. I miss the joy of singing from the same place on the same page, of knowing that even though our voices are different, when we join them together, we achieve a unity that satisfies our humanness. I miss the challenges of music–that even though the way to sublime beauty might be fraught with technical and aesthetic difficulty, initially beyond our capacity, together we can move beyond our own limited visions of ourselves, and collectively achieve a beauty that lifts our spirits way above our limited individual perceptions of our own capability. For me, music represents how to pull the very best out of this human experience, not in competition with other musicians, but in the spirit that just because we have glimpsed beauty from one choir, does not mean that there isn’t space for beauty from another and another and another. Beautiful music does not work well in a deficits model, and this part of my life speaks to me about the way that we do dis ease in the history of the world, part 1.
In the politics of dis ease, we believe that if different groups “compete” for scarce resources, then they will hone their research to be better, more effective. So the system is set up to say, “what is mine is mine, and what is yours, I want.” There is an underlying belief that winning a grant for research means that losing a grant will weed out the less worthy, the less capable, and that we will progress to success due to the competitive nature of research. I don’t deny that such a system encourages some forms of highly effective research. But my experience with my “orphan dis ease,” so called due to its rarity of diagnosis and treatment, really points out how a purely scientific approach, specifically the approach encouraged by our national research policy and realized by the big pharmaceuticals, misses opportunities for development and treatment that could yield meaningful effects.
The current state of affairs is a cacophony. It is like telling the choir, “some of you sing from page 3, and some of you sing from page 8, and I am sure we will find a unity in the music at some point.” If I could offer an alternative, it would be to make the aesthetics of dis ease just as important as the science. We would systemically encourage groups to work together, to maximize research through unified models across the board, to realize that the scarce resource model is actually a model that encourages scarcity due to its insistence on losers. And frankly, shifting our approach would maximize resources in the long run.
Most of the time, when I sit down to write this blog, I’m not quite sure where it is going. I try to select something that seems significant to me in the week, and then peel up the carpet underneath it to see what the real meaning is. I think all of you know that writing is very therapeutic for me, and I hope that you don’t see this as whining (although there is probably some element of whining in it). As I go ever deeper into this process of dis ease, I have become more and more aware of the fact that our models are just as responsible for our outcomes as the dis ease itself. ALS is stubborn, brutal in the fact that in the 150 years that we have formally known the syndrome, science has yielded only one approved drug for treatment. And of course, I’ve got a dog in this hunt. I so want the research efforts to work and to yield good results. As a musician, having been a part of great musical performances, and (I hate to admit it) music that was not so good, I know that the difference, once you have accounted for rehearsal time, is miniscule. Invariably, the difference has come down to getting on the same page and solving the technical and aesthetic challenges in a systemic and unified way.
As I face my new music, I cannot help myself but hope that dis ease might find the same unity that is so necessary in the arts. I’ve always been a hopeful person, and right now my deepest hope is that the orphans will find the beauty in a unified vision that values a lot of different voices singing the same song. Now that is a tune I could sing, and I’d bet that ALS would yield to its beauty.
Yours in ALS,