Tag Archives: Crohn’s Disease

The truth and reconciliation

image

My body is not one. It has shown itself now to be a collection of minor beings struggling to work together without really knowing how. I felt them begin to pull apart, these pieces of me, my own free floating awareness pitting me as an observer against my-selves. As I lay in convalescence after the harrowing break, with the black rock of my own death still cold in my hands, I ask again and again, “how did this happen?”

How and indeed why – the questions come and go like Prufrock’s ladies sometimes louder than before, sometimes softer, always there at least somewhere in the background. The science is clear even where it is ambiguous. The autoimmune disease turns my best defender against me. Now my oh-so-powerful body attacks me. It cannot tell the difference between me and my enemies. It attacks with full force like a mad dog that doesn’t know what it’s doing and can only lash out, because that is now the nature of its being.

My body is not one. A beast lies within, ready to attack at some semi-random moment when something wakes it up. The beast wasn’t always so. It was my friend in older times, defended me against the world and kept me safe, until something flipped and everything changed. A gene was switched, some of the doctors will say. Something triggered it like too much stress, spicy food, or alcohol. It feels like possession, like something outside stepped in and captured this part of me and turned it rogue, like a son who attacks his father because in his greed and hubris he cannot be who he was born to be. It feels angry within me; it has something to say, only it has no words and can only attack what it cannot understand.

My body is not one. It is not what it was. After the attack, this time, they had to cut away a big piece, and what was once complete and then quite sick is no longer there. It was cut out by carefully trained hands, that piece of my body turned against me by the beast. It was cut away to stop the harm, a piece of death arrested, excised, and placed into a bin for further study, when the doctors will try to figure out why and how. With the diseased part of me gone now, they say I’ll be able to start over. With the resection went the larger risks, some of the cancer prospect, and the places where the beast fed on my life itself.

My body is not one. It will never be one again, even when I get better. I will have to care for the beast and love it surely as one loves the rogue son – for he is mine and I cannot deny him. I must forgive the wrongs and find a new way to love myself and my-selves, believing in a kind of healing I’ve never imagined before. The doctors have cleaned up the mess and put the beast in a box. I’m being redrawn and reconnected, like the overhaul of plumbing in an old house, a renovation in flesh and blood.

My body is not one. Part of it has died, part of it is new, part is restored, part must be contained. What did the doctors see when they began the renovation? Maybe that’s not even a question they ask. They just do their best and move on, repairing harm and ending suffering. Is it up to me to see what I need to see? The doctors came back and told me that I was young even though I felt old, that I was healthy even though I felt sick, that I was already getting better even though I was racked with pain and doubt.

My body is not one. Yet all must be reconciled. It cannot just be contained. It cannot be a regime of toleration. We cannot agree to disagree, play nice, share the sandbox. We must transcend that which divides to form a new self even while the rest of our clamoring selves continue their cantankerous dialogue down beneath. I read the letters of Saint Paul to myself over and over again, on building a church of love from disparate groups and individuals who want to belong together. Saint Paul comes to us with words soothing and stern, asking us to let love be our guide, the same self-sacrificing love shown to us by the Savior – for us to enact in our own lives until we return to Him and are one again.

Can my body be one? I have to ask even though I suspect it will always be at the very least a balancing act between reality and desire. Every day will be a challenge to keep my-selves together in a common vision of who we are. It will be time and sweat and hard work even when I know something is different inside. The doctors will tell me I need to be vigilant because the beast cannot be tamed forever, even with the greatest love I can give. I can never trust fully. The beast has taken that away even though I must love my beast-child while never turning my back.

Can my body be one? Without trust there can be no reconciliation. But how can I trust the beast? Maybe that is not the right place to start: rather, I can begin by calling it what it is and not what it feels like. It’s not a beast or a rogue son. It’s a mistake, there only because it is. We can’t know how it came to me, except to know that my mother shared some of these symptoms and, in the end, succumbed to her own autoimmune demon via multiple sclerosis. She struggled so hard to know why, only I don’t think there’s a why. Illness is as much part of life as health.

What is it, if not a beast? Is it me? Could it be that simple? It may be an aberration, something most people don’t deal with, but I’m not the only one. Rare perhaps but we are many, and as I look around me perhaps not rare indeed. We are who we are, and this is part of me, as much as missing nine molars is part of me. Those teeth were never there and my mouth ends in gum lines where others have teeth. Yet I eat and have a bright smile that warms hearts and helps me say hello. It’s nothing more than who I am, a man missing a lot of molars, with a baby molar still there on my right side at 52 years. And now, a man with Crohn’s Disease and a long life ahead.

Reconciliation is never complete. It is an ongoing action, something practiced, never done, always incipient. The virtue of reconciliation is that it is always on the verge of its own demise, challenging us constantly to make it real. The daily exercise of reconciliation is a stand against entropy, casting hope into the world. Reconciliation is a pathway, a bridge from one way of life to another. Reconciliation keeps the pieces of me together and holds out the hope we need even when the disease itself will always be there, even if only in shadows.

My body may not be one. But all the pieces are mine. Reconciliation keeps us honest and gives us a chance.

image

 

Notes and credits

The opening photograph is the author at Maimonides Hospital in Brooklyn following emergency surgery for a burst colon, January 27, 2016. The second photograph is flowers in my room, sent by family.

 

 

2 Comments

Filed under ageing, body, death, entropy, life, resilience, truth