Two Stories and an Interlude

What does the first week in March, 2013 bring to the understanding of dis ease? This week, we had 9 inches of snow, the first snow days in the Twin Cities in years, and along with what some deem as typical March weather, I made significant changes in my caregiving plan that mark both a realism and a hopefulness about life. I can’t help but ask, as my hands weaken and my interpretations of modesty shift, “Is this the way it goes?” I can’t help but ask, “Is a typical March snowstorm a portent of the physical storm to come?” And I can’t help but conclude that in all things dis ease, everything is fixed and I can’t change it. But with such questions and conclusions swirling around me, it strikes me that there are two stories, seeking to make sense of all of this, and neither of them is adequate to the experience. This may start to sound preachy, and that is really not my intention. I just notice the stories much more clearly in the first week of March, 2013 with 9 inches of snow and the first snow days in the Twin Cities in years.

Two stories, one framed in Fear and the other in the Fantastic.

How does Fear frame our human story of dis ease? The Fear story says if you can accumulate enough, if you can live in the right places, go to the right schools, make enough money to buy the right things, gate your community, avoid “those” people, stay above the messiness of unwashed humanity, crush any dissent to the narrative – real or imagined, dis ease will never trouble your existence. It’s a story of enormous resource, poured into avoiding death, seeking a control you can never have, where Fear is nothing more than motivation, change isn’t necessary, and people who own a different history can be held at arms length with no consequence. This is a story that has birthed a Western, capitalist, materialism as the key plot-line to the narrative. It is seemingly and brutally honest and terrifyingly realistic, and it makes tremendous sense in a world that seems irrational and dangerous and less than truthful. In the Fear story, dis ability, dis ease, dis array are the punitive consequences of a life out of control, blaming those conditions on the person and not the circumstance.

Countering the Fear story is a story based in Fantasy. It’s a story that says if you just believe enough, if you can give enough to the right people, show up for school, not worry about money, forget the materialism, take no responsibility for control and require that all responsibility ultimately flows back to the system, then dis ease will never trouble your existence. It’s a story that says death comes to us all so don’t worry, no need for concern, change is inevitable, and difference is easy to manage. It is a story of eschatology, one that says live for today for who knows what tomorrow will bring, one that would have rich people give away all their possessions and poor people pour scented oil having spent the last pennies they had for the privilege of the sensuous experience. The Fantastical narrative rears its head from time to time in our history as a refutation of Western, capitalist materialism, and the key plot-line to the narrative is that something greater than us will always make sense of an irrational and dangerous and less than truthful world. It’s a story that explains the massive, unpredictable event as inevitable, so there is nothing you can do about it. It tells us that dis ability, dis ease, dis array are the inevitable consequences to a material life, so in the words of Bobbie McFerrin, “Don’t Worry, Be Happy.”

You probably think I am oversimplifying. Of course I’m oversimplifying. There’s no other way to make the point. After 9 inches of snow on a windy March day, oversimplification is the storyline of the day.

An interlude:

This week, the mainline news proclaimed an AIDS cure for a baby. The complexity of AIDS belies its simple and truthful origin. In the nineteen eighties this complexity made us think that there would never be a cure, a vaccine, adequate treatment, sufficient management of this remarkably complex disease. And yet, the mainline news proclaims a cure for a baby. And of course, those of us who live with the complexity of ALS ask, “If it can happen for AIDS, why not ALS?” And we know the answer.

The cure is material and fantastical.

Neither story – the Fearful or the Fantastical – is adequate or truthful or real. The Fearful story is a denial of what I know. I know I will die sooner than I wish. I know it isn’t the punitive consequence of a life out of control. And at the same time, the Fantasy offers no comfort. I know that I cannot believe dis ease away. I know I cannot be so out of control as to deny responsibility for the consequences to come. After 9 inches of snow on a windy March day I don’t have time for Fearful or Fantastic simplicity. Dis ease is overarching, and ALS is not its only servant. Fear and Fantasy, dis ease and disease are teachers with great requirements for honesty and reality.

What I really know is this:  The two stories are not mutually exclusive, even though each story rejects the other’s truth.  One denies the reality of cost, of economics, of means and ends, while the other disavows difference and chaos and control or lack thereof. In the end, whether fully embraced or totally denied, dis ease teaches a story that says Fear is an overrated motivation, and Fantasy is more than an eschatological gesture. Dis ease teaches a story that insists the frameworks of Fear and Fantasy require each other, for neither offers a narrative that is any good without the corrective the other provides, and that alone each is chaotic and dishonest and harmful.

Dis ease is a story that encompasses the Fearful and the Fantastical. Dis ease means there is no cure for AIDS; rather a working solution has been found for one child. We may learn to apply it for the 300,000 children afflicted by AIDS each year, but it will not be a quick fix. And I have to remember that no story of fear will cure ALS. No story of Fantasy will develop adequate treatments.

And one final addition to the story is this: I know there is not enough time for my story to end other than in fulfillment of the current narrative – a story where neither Fear nor Fantasy prevail, but love and work and gratefulness for the human engagement that makes the story – dis ease and all – what it is as it continues to grow toward Spring.