Editor's note: The word disease is written dis ease by Bruce Kramer in all of his blogs, which coincides with the title of his blog, Dis Ease Diary.
|Bruce Kramer, Ph.D.
As expatriates living in Egypt, we walked a fine line between the laughable and the ludicrous, sometimes within seconds of each other, and often in the same situation. With so many possible stories from which to choose, I hope you will indulge me in using the local beer — Stella (not to be confused with the Belgian Budweiser) — to illustrate. Stella came in oversized bottles, green or brown, that had to be held up to the light in order to see whether “floaters,” usually some unfortunate cockroach seeking an early sample of the brew, were present. And more often than not, the carbonation had seeped out from an improperly installed bottlecap. Drinking Stella was at the very least a question waiting to be answered, and sometimes it became a great adventure, more than anyone should have just for the sake of drinking beer.
Local entrepreneurs played upon the quality control of Stella beer. They developed specific fashion lines for the expatriate communities so that two extremely popular T-shirts sold in our ghetto environment were Stella-inspired: “Stella Beer — 10,000 Cockroaches Can’t Be Wrong!” and my favorite, “That Which Does Not Kill Us Makes Us Strong — Stella Beer.” Who am I to argue with burgeoning capitalism?
From my dis ease and ALS vantage point, “That which does not kill us makes us strong” garners a much different meaning than my interpretation of 25 years ago. As I look back at my old normal, the saying might actually be one of the primary stanchions on which I built a major part of my life. “That which does not kill us … ” smacks of running at the speed of light right up to the edge of personal disaster, just to see how long you might totter before going over. A false implication of immortality exists in the saying. For many of us, “that which does not kill us,” actually becomes “nothing will kill me, and I will always be strong.” It only takes the kind ministrations of dis ease to contradict the immortality and blur the meaning.
If you know dis ease, then you know a confluence of negative events can be deadly. It can happen very quickly as in a horrible accident where one poor decision cascades into fatality. Or it can happen in slow motion; a floppy foot, a couple of falls, a lump, a hematoma, a diagnosis. It isn’t the speed of the event itself, it’s the confluence, and at some point no matter who you are or what the circumstance, it becomes too much to bear, overwhelming your humanity into a new existence marked by your certain demise. But our human existence is also marked by denial. Since the time of my diagnosis, well-meaning people have shared that “God only gives you what you can handle.” I usually thank them when they say it, for I know they mean to offer me comfort. But such a statement is one that obfuscates our human condition. Something out there will kill us.
This past week, I Skyped with a friend with whom I had not spoken for years. Our conversation, framed in connection and catch up, found us trying to explain in the space of an hour some of the most meaningful events in the time since we last saw each other with all of the success one might have teaching nuclear physics to a three-year-old. Both of us struggled to overcome language and context and emotion and time, bravely seeking to re-create connection. Each of us had a story to tell about our kids, and that story contained real fear — palpable, tangible, sweat-streaked and tear-stained, and just distant enough to allow us to relate the stories in straight tones, yet present enough to still invoke the powerful fight or flight that only a parent experiences. I think that one of us even said, “That which does not kill us … ” in an attempt to rationalize tough times in the lives of our kids and the fear we both carried.
We are both old enough to know life’s great lesson — it will always give you more than you can handle.
It isn’t difficult to apply what we both know to my present situation. I have never had a teacher like ALS — so demanding, so exacting, so focused on the outcome. ALS schools me to remain psychologically upright even as she lays me flat. ALS requires me to strategize independence, even as she diminishes my body, forcing me into dependency I neither seek nor want. ALS reveals gradual and sudden loss — pure, heart-wrenching, gut-scalding. It might seem her real lesson is, “That which does not kill us, actually will,” but I keep learning that one must not end with the obvious answer. The depth of my teacher is far greater than being simply overwhelmed.
We are taught to believe that we have control over things that we do not, that we are personally responsible for such control while life belies the fact. Paradoxically, we know our control is miniscule, dwarfed in its comparison to God the universe and everything, so it might seem our only choice is existential angst. Deeper learning seeks reconciliation, so that through the requirements and diminishment and loss, ALS whispers to me to have faith; the lessons are deeper than the losses, each loss is a teachable moment, an opportunity to grow until growth is no longer possible, a road map to the ultimate outcome, a faith in more than the fact of loss. ALS quiets the noise revealing human music and God singing in great statements, credos of faith that we are here in the moment with no influence on the past, and a future always unclear. And if we choose we can go it alone, or we can embrace our big messy human condition together in the struggle to understand a world that of necessity must always be just beyond our comprehension. The noise abates, and what is left is a teacher’s purity.
Open your heart. Breathe in faith. Embrace your humanness. Glimpse God. Sing.
We will always be given more than we can handle. We will always have the choice as to how we respond — collectively, singly, the great choral hallelujah, the quiet solo aria. There is space for both so that in the end when we must go gently alone, the gift becomes apparent if you have eyes to see or ears to hear or skin to sense. That which makes us strong is what we can shoulder in concert, in tryst with each other, blessed by the communion of saints and sinners with lusty voices trying to go it together until we are released into the magnificent universe to rejoin that which we cannot understand with one, great, hymnal, solo aspiration — a final ah.
I think you could drink to that, although if it is a Stella beer, you might want to check for floaters.
The blog was posted originally on Sept. 14, 2013.
About the Author
Bruce Kramer, Ph.D., was diagnosed with ALS in December 2010. An educator for his entire life, he served as the dean of the College of Education, Leadership and Counseling at the University of St. Thomas in Saint Paul, Minn., until October 2012.
Since March 2011, he has written the Dis Ease Diary, reflections on living and dying with ALS, and is featured in Minnesota Public Radio’s Living with ALS series.
Kramer is married to Evelyn Emerson, a teacher, and he has two sons, two “daughters-in-love,” and a grandchild on the way.