Facing the Music

Dear Friends,

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,

Bruce

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7 thoughts on “Facing the Music

  1. I hear you re: Cacophony on the research side. As a statistician and an academic, I spent a lot of my time chasing grant money. Those monies are going down dramatically these days (the wars and Wall Street walked off with a lot of our nation’s wealth), so competition is fierce. There is increasingly no distinction made between the words “good” and “fundable” when it comes to research at the U, especially in the Academic Health Center.

    Having said that, the research is still peer-reviewed, and the competition does drive the researchers closer to excellence than simply handing out checks would. And I can tell you I’m on a joint academic-industry panel to improve the statistical analysis of drug treatments for “orphan diseases”, dis eases so rare that no drug company wants to invest significant resources in them (since they would be unlikely to recoup their investments given the small numbers of persons affected). So I can tell you ALS and other similar dis eases are on our radar; it’s all about getting the most out of what little data and resources we have.

  2. It is amazingly disconcerting that money “what’s in it for me” drives research and development for diseases that could have solutions. Last year I spent a week with a very dear friend who was in chemo treatment for CLL. Thankfully she is in remission right now, but it was an eye opener for us both when we learned from the doctors (and her daughter is a doc as well) that there are drugs already discovered that can cure some cancers, but the cost of “doing business” does not warrant the distribution of these drugs.

    Ten million seems like a drop in the proverbial bucket when compared to other dis eases that we suffer, no matter how prevalent they are or shall I say how many people they affect, should determine how much money is spent on research and cure. What a terrible disappointment that is. Maybe we who participate in making music, are so drawn to it because we can take the pieces and put them together to create a whole that we could otherwise never do on our own. That we can glimpse the momentary ethereal experience by working together is of great satisfaction and so too do we gain a spiritual renewal from it.

    Oh that the world of economics could learn a lesson from the arts. Too bad that even the arts suffer because there isn’t enough economic value in them. God Bless you, Bruce.

  3. Your words, dear Bruce, speak to the heart. Music even goes beyond that. There are so many things that we can’t control. I hope when you’re feeling especially frustrated that you recall a piece of music or some words from songs you’ve sung or directed, using that as a brief respite from the pain of the changes that are occurring. I’ve often wondered why or how our brains hold onto music or have “that tune going in my head over and over.” You certainly put some of the music into my head when you gave our choir the musical gifts you have. You’re now putting other gifts into our minds through your amazing words. Sing on, however you can!
    With gratitude for all of your gifts,
    Lynn

  4. Once again, Bruce, you nailed with perfection your struggle-of-the-moment. As another musician, I feel my heart soar in remembering joyful moments making music, and also feel your angst in dealing with the disunity within scientific pursuits of hope. I cherish your
    gift with words as I cherished my all-too-brief time making music with your direction. God bless.

    Barb

  5. Bruce,

    You’ve always had a gift for being able to make the conceptual tangible and more so now given the intense nature of the reality you embrace daily. I appreciate and respect your willingness to share your experience and admire your courage and clarity of thought – your words reflect a simplicity and purity that dignifies humanity. Your statement about not knowing where your blog will go when you sit down to write is just fine with me because it inevitably comes right back to where it starts and ends… your head and heart.

    I’m not a researcher nor an academic and I certainly don’t lay claim to anything other than a caring conscience for equality and justice. I’m just another caring human being and friend who cares about you, about people, particularly the people who are vulnerable, on the edge of life and in need of love and hope.

    I get your commentary on the world of research and its “dog-eat-dog” mentality. It seems to me that the “ego” inevitably clouds the hearts of those who champion the “non-profit” cause in a similar fashion that $$ drives the “for profit” world. Isn’t it ironic that an enterprise whose purpose is an inherent betterment of humanity allows itself to devolve into a selfishness that minimizes the collective potential of the very object of it’s purpose. If these voices could sing together in harmony as you suggest, the essence of God and goodness could do so much more with so much less!

    Thanks for sharing. You make me think about a lot of things that force me to stop and think more and then some more. Keep thinking, sharing and writing.

    w/ love,

    T

  6. Hey Bruce, this email speaks from the heart and soul of a person who is actually living with the dis ease. I would highly encourage you send a copy of this email to both sides of the research coin. I really think it might give them pause to reconsider how they conduct business as usual.
    When I read your blog, it made me think of the 3 Mile Island nuclear disaster. Jim shared with me that when he went to MIT Nuclear School a few years ago, he learned that all the nuclear companies in this country were disconnected and out of touch with one another before that happened. Here is the kicker, if they had been talking and had shared their expertise there was a good chance it wouldn’t have happened. It wasn’t until that big nuclear mess that they all got together and united their fronts. Today, the US has a safety record next to none. What you’re asking can be done. You might just the be ALS person to get their attention with your email and unite their fronts.

  7. Sometimes you wonder if anyone can see the forest for the trees? It would only take one person to stand back and clarify the efficient way to solve a problem. Share the information, all of it, internationally. The goal is the cure, not the business. So, how do we provide adequate budget, compensation, and communication between laboratories to speed things along? We know that if we can think it, we can do it. And I truly believe their are more compassionate people in the sciences than there are finance experts. Also, if scientist are not given enough funding to support all of their failures, they will never reach the great discovery that results from the lessons learned.

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