I am on my way to Mayo for a quarterly ALS management consultation. This is my fourth consultation since being diagnosed, and my second at Mayo, where I have decided to go for my ALS Clinics. As early as I am in the “progression” of my dis ease, I am getting into a familiar routine with its management. There will be lots of observations, pushing and pulling by neurologists and physiatrists, blood drawn, pulmonary tests, OT and PT info, speech and diet evaluations, and an incredible amount of information offered (I might have a couple of questions not easily answered myself). In short, it is a time of measurement and prognostication, and I have to be sharp, even though the ALS Clinic is incredibly exhausting. The greatest challenge of this experience is to remain a whole being, in spite of the systemic reduction of me from human, to a series of measurements and symptoms indicative of dis eases’ control and promise.
I am going to share with you one of my earliest experiences with dis ease, as it is instructive. When Ev and I received my diagnosis, it was an assault on everything we hold as human. It was like a psycho-emotional cyclone, obliterating self, family, even our friends. My ALS diagnosis was delivered in a way that reduced me to my basest and most inhuman self. The brutality of the delivery inspired PTSD moments (and flashbacks). The way that the neurologist forced us into his measured reduction consisting of a series of medical tests and a presentation of symptomology, stripped away any delusions of humanness we might have held. Then to follow it up, he removed all hope through his masterful use of a psychic probe of suicidal tendencies (“I must ask you,” he said. “Do you feel suicidal?” “No,” I answered as I wondered if homicide was justifiable in this circumstance).
Don’t feel sorry for us. But understand that measurement has consequences when we reduce humans to merely the measure. I am thankful to have found healing in the love and caring of my partner in crime, my sons as they deal with their father’s mortality as imperfectly and perfectly as they can, and of course in the myriad of friends and colleagues who have reached out in so many significant ways. But measuring up to dis ease still remains. It is seared in my psyche as I move into this quarterly liturgy of managing the symptoms.
Thus, even in the supportive environment of an ALS Clinic, I find myself fighting through the reduction of me into a progression of symptoms, constantly telling myself that these folks have my best interest at heart, while carrying the fresh memory of diagnosis delivered even though it is yesterday’s news. I have to admit to you that I am so tempted to lie to them, to tell them nothing about this symptom or that. I know this is a delusion to maintain my own sense of control, but it would allow me to say, “I am in charge of this person dammit, and y’all can go play your measurement games with some other patsy!” I know I shouldn’t feel so defensive about something that is actually beyond my control, but I have this old normal need to measure up to the old ways, to behave as if everything, every measure taken, was normal. And herein lies the insidiousness of dis ease.
We really do lack control. All of us. To make life somewhat predictable, we have devised multiple sets of measurements by which we judge our circumstances and the people within them. And when those measurements fall outside the range of normal, a range of which we are not even aware most of the time, we create a new normal that allows us to control these seeming freaks of nature, as if we had control. Bigotry works this way. The big institutions–government, religion–work this way. And this is the way that dis ease management seeks to work–taking the remarkable, the extraordinary, the frightening and yes the supernatural–and reducing these to their simplest forms for management’s sake. It is classic. It is so typical for us as humans to reduce our experiences into these easily normed categories, that we have made the experience of reduction unconscious. Professional dis ease management takes this unconscious reduction, and makes it a conscious act, assuming that in consciousness lies truth.
There is a scene in the movie Apollo 13 where the astronauts rip off all their health monitoring equipment in defiance of the flight surgeons. Suddenly, they take back their whole humanness, by refusing to participate in the vitals and symptoms reduction that the monitors foster. As irrational as their actions may seem, I understand the way they feel. Are they really in control? Nope. They are still in deep manure with a spacecraft that won’t behave. But it feels like they are more in control, because they don’t have to measure up to the assumptions of the (so called) mission controllers. The scene speaks enormously to me.
If you knew me pre-ALS, you knew an active, healthy guy with all the unconscious assumptions by which he was measured. Now, with dis ease, I am framed by the symptoms and measurements held within ALS. To get the most out of my dis ease management, I must consciously tell myself not to lie to the team, that maybe some reduction isn’t a bad thing. Because deep down, even though my spacecraft is also not behaving as planned, I need to believe that I too exercise some semblance of control. In order to take this on in a meaningful way, I have to feel like I’m steering the ship. It is the human dichotomy of knowing that ultimately the ship will go where it goes, because of or in spite of the exercise of my will in a way that makes me feel I have influenced its trajectory.
ALS, dis ease has changed me. I am both more open, and more measured in my approach to life. I am more demanding of control, and I have less faith in control’s delusions. I am much more conscious of others’ perceptions as to whether I am measuring up, and I am much less worried about what others think those measures mean. Dis ease picks off all of those scabs, exposes all of those fallacies, and it reduces the superhuman medical establishment and the ordinary human day-to-day experience to the realm of merely mortal. Measuring up takes on a whole new meaning, and it is way beyond the meaning of the measure. In the end, the well meaning clinic, and the psyche battering neurologist will both have to get it. In spite of everything, we humans are basically in the hands of something much bigger than ourselves. Any control we might exercise, is only because our existence aligns with its ultimate purpose. I find comfort in this statement of faith, and as I get ready to start the Mayo run, it allows me my own measured reduction–my symptoms into the wholeness of being in this world.
It really is the only way to measure up.