Scott Robinson taught college music at a Christian university for 10 years before leaving to pursue hospice chaplaincy as an ordained Interfaith Minister. He has written for Sojourners Magazine, PRISM, Cross Currents, Minnesota Parent, the Philadelphia Inquirer, and the St. Paul Pioneer Press. He currently composes, records, and performs original kirtan with his band Mandala. Scott is a professed member of the Third Order of St. Francis, and lives in Philadelphia with his wife and two daughters.
I have been diagnosed with a fatal neurodegenerative disease called cortico-basal syndrome.
It’s a nastier cousin of Parkinson’s disease—one that moves faster and for which there is no treatment.
Over time, my limbs will turn to beef jerky, my brain will curdle into ricotta cheese, I will lose control of my muscles, probably get pneumonia or something, and die within five years or so.
We have a lot of conversations I don’t want to have—about life support and feeding tubes and how long before the medications stop working.
Learning how to take care of myself and preserve what functioning I have while I can, I’ve been spending more time in the right-here-and-right-now than I ever have before. And the lighting is pretty harsh.
I’ve also been wrestling with a biblical passage, in which the writer addresses the Jesus movement as people who “may declare the praises of him who called you out of darkness into his wonderful light.”
That sounds beautiful, though I’ve never really reflected on the fact that I have no idea what it means or feels like to be called out of darkness and into the light. But I think I do now, at least with respect to myself.
I have come to believe that “the darkness” is most of what goes on in my head. Playing and replaying resentful memories. Revenge scenarios. Sexual fantasies. Endless loops upon loops that keep me in my head and out of touch with whatever is outside my head.
I have also come to believe that “the wonderful light” is what happens on the other side of my eyeballs—the people, places, activities, and situations in which I am actually placed.
Since my diagnosis, I’ve spent considerably less time in the darkness inside my head, and a lot more time in the wonderful light. And I’m here to tell you: the wonderful light sucks rocks sometimes.
Obviously, in the wonderful light, I am more in touch with my own life as I am living it. It makes me wonder how much life I have missed while hanging out in the darkness in my head. There must’ve been an awful lot more life I could’ve lived in front of my eyeballs than I have lived behind them.
Another advantage of the wonderful light is the way it has encouraged me to cultivate the “curiosity” about things that Buddhist writer Pema Chödrön is always touting.
What’s it like to have someone stand with you in the bathroom because you are a “fall risk?” What’s it like to eat French toast with your fingers in front of other people because only one of your hands works? What’s it like to realize you are never going to be a grandfather, or father of the bride, or see your goddaughter confirmed? What’s it like when people honk their car horns at you because you aren’t hobbling fast enough? What’s it like to have someone else wash your ass in a shower chair?
All these things would be happening to me whether I were living in the darkness of my head or in the wonderful light; in the light, they are things I am learning about, and learning from, rather than merely things that are happening to me. This is a choice we all make, moment by moment—to stay present, or to check out; to stand the ground of our awareness, or retreat into self-distraction. We can be victims of events, or we can be students of them.
Now, if all this were a theory, and not just a making-sense of my own situation, it would be full of holes.
There is a man down the hall from my rehab hospital room—I believe he had a stroke—who yells incoherently every night. I have overheard the nurses discussing the possibility of restraints. Is he inside, in the darkness, or outside, in the light?
As a hospice chaplain, I once sat by the bedside of a dying woman for an hour and a half before the nurse suggested I go home, noting that it could be hours before the patient died. As I left her side, I could see in her eyes what I could only interpret as terror. She died five minutes after I left. Was she inside, in the darkness, or outside, in the light?
I cherish a vast trove of happy memories of my family and friends in my heart. All my music, all my writing, every act of kindness I have ever shared, has come from inside. Even the Kingdom of God, Jesus said, is within us. (Luke 17:21)
And are “darkness” and “light” even meaningful categories? According to Psalm 139:10-11, “If I say, ‘Surely the darkness will cover me, and the light around me turn to night,’ darkness is not dark to you; the night is as bright as the day; darkness and light to you are both alike.”
And even if darkness and light are valid concepts, the Gospel of John tells us that the darkness is precisely where the light is to be found. “The Light shines in the darkness, and the darkness has not comprehended it.” (John 1:5)
So the temptation to retreat to some ersatz inner “happy place” can be strong, and not just for me. But I’ve heard so many people—friends, patients, and patients’ families—express gratitude for the immediacy, the intensity of presence they have experienced in the shadow of death. Few things can help us to be here now like knowing we won’t be here much longer.
So for now, I am glad my illness has evicted me from my inner darkness and thrust me into the outer light, where my life has a reality, an immediacy it has only rarely had in the past.
The endless replaying of pointless thoughts in which I used to spend so much of my time has largely abated, and while I am reading books and yes, watching a certain amount of Netflix, I’m not fantasizing about punching my eighth grade vice principal in his coarse, fat, stupid face, and that’s an improvement.
And of course, I do think a lot about dying, and pain, and debility, but those thoughts are about real things. The family I worry about and dread to leave are real. The friends who visit me are real. The medication-induced constipation is real. It’s all real.
Maybe this is why Jesus said, “I have come that you may have life, and have it more abundantly.” (John 10:10) Not more easily. Not more conveniently. Certainly not more painlessly. Just more abundantly. More life. Uncensored life. The whole dirty ball of wax.