You might have noticed that there are some words I often come back to for descriptive purposes. For example, I talk about fatigue instead of tiredness and meltdown over the adult version of temper tantrum. I try to avoid being overly political or cynical, not controversial but challenging; usually commenting on things that through the eyes of dis ease, seem very different from the temporarily able bodied perceptions I used to hold as if they were permanent. This is deliberate as old familiar feelings, thoughts, intuitions, perceptions passed through always present ALS, take on the quality of almost-epiphanies, significant realizations calling for extra attention. When I need to work something out, when no moniker of enlightenment magically appears, I know that there is nothing to be done except write, examine the inadequacy of written words and rework the writing over and over until it yields meaning. I often describe this state as being in a “swirl.” Usually associated with the layered blending of frozen yoghurt, I find the word highly useful in describing thoughts that have no peace. Swirl is its own dis ease—as if you are carrying something quite significant, but the only way you can find to describe it is mired in something trivial, incendiary, naïve, incoherent, inadequate, mute when words are needed, and over-spoken when a quiet center would be more useful.
For me, swirl often happens at the confluence of several significant events. This past week, the combination of a visit of friends from Norway that made me much more conscious of the trial of a mass murderer, Supreme Court decisions on healthcare and immigration, and ramped up coverage of Minnesota’s so-called marriage amendment created such a confluence. Each of these public events inspired its own swirl, with the majority of the discussion reflecting a less than thoughtful, easily predictable direction. In fact, the way that these issues were presented was designed to appeal to specific frames of reference—that combination of culture and experience that creates scaffolds of knowledge from which we judge all experiences, all situations, all others. While it may be impossible to experience anything other than the coverage we experienced last week, I feel something else is really going on. It could be argued that these three highly charged issues are being used to sort us into uneasy conscious columns of culture, although I cannot help but feel that the manner of presentation is much more about a broader spectacle of dis ease.
The trial of a man that killed 77 humans has raised a number of public, fundamental questions about justice and just proceedings, the role of the press, whether a civilized society should have the death penalty or life sentence, and especially about the responsibility of all these institutions to the families and friends and memories of the victims. And of course, the so called debate on universal health care was not definitively answered by John Roberts and the Supreme Court. That decision has inspired Shakespearean heights of “sound and fury, signifying nothing.” I have Facebook open right now, noting the “political” postings of my “friends” and I can only observe the lack of critique for anything that vibrates in harmony with personal beliefs, and the over the top diminution and outright vitriol that is reserved for those who differ. Add in the advertisements that have started appearing in the State of Minnesota both supporting and decrying the “No Gay Marriage” Amendment that has made its way onto our November ballot, and it will be hard to get a word in edgewise.
Talk about the dis ease we carry.
I am not going to discuss the rightness or wrongness of people’s positions vis-a-vis these issues; that is not the point here. Rather, these examples illustrate a swirling of the human collective, and it is troubling. I have come to realize that as my own physical abilities to connect with other humans are waning daily, the ability to recognize another person’s humanity, to connect in some way that is meaningful, to engage in that which fosters growth rather than diminishment, has become more and more important to me. How, if our humanity is the connective tissue that binds us, can we be so divided by the events that shape us?
This is not just a philosophical question; my life quality is specifically influenced by the value of the human engagement that I am granted.
The issue is not one of recognition. We homo sapiens don’t seem to have any trouble recognizing other humans. But our immediate recognition is so overladen with other stuff, that human appreciation flies out the window. To paraphrase Shakespeare again, “methinks we do protest too much.” I am overwhelmed by the dis ease of our collective humanity in these exchanges, even as I also feel my own urge to participate in the same, as if it would ease the ache I carry in my heart, or the anger in my gut. And to what end would such participation lead me? Do my brothers and sisters find solace, release, joy, peace in their own participation? When I project myself into such doings, I perceive nothing but emptiness, vacuous self-congratulations with no substance, hurt and fear and manipulation and the wholesale destruction of others. Whole industries are predicated on as much. Whole cultures echo this noise.
What’s the alternative?
Today, I attended a funeral. Since it was in another state, it was streamed on the internet. Oh how I longed to physically reach out to this lovely collective rallying for the family of a beautiful young mother and pastor to their community, even as they grieved her loss. Her life flamed like a solar flare, only visible to a certain, dis eased hemisphere. Somehow, I came into the sphere of her influence, and today I ached with electronically mediated fingers to grasp the beauty of living where she inspired human truths of love and living and dying and laughter and grief. But in this swirl of sorrow, came an epiphany. This whirlwind of death and grief, lit by this beautiful soul alive to the ages to come, only dead in physical body, pointed to another way. In a small voice that pierced my own dis ease, here came the revelation.
Humans are capable of fearless love for each other. The funeral of a person whose Caring Bridge site was called “My Cup Runneth Over” in spite of the fact that it was possible to see her cup poured out on the ground by the ravages of cancer, pointed to the incredible human capacity we have for connections that build each other, that face the fear of living with dignity and encourage a centeredness where dis ease is only a consideration, not a rule. It was an acknowledgement of the value of a life lived fully, conjoined with the grief of a life lived way too short. But the capacity of the human soul is such that we can honor and live with such contradiction, if we dare.
I realize now that my swirl this week was not so much the noise of murderers and fear mongers. It was the contrast of living until you die, with dying as you live. And living until you die is only possible if fear and emptiness are replaced with growth and love and fostering a center where spirit shines past death and into lives and lives and lives.
I’ll take that with nuts on top.
Dis Ease Diary 