How to Take Back Your Dignity After MS Strips It Away
Before developing MS at age 41, I played a well-defined, predictable role in the world. I spent most of my energy trying to decipher complex games of what-to-say-to-whom-and-when in a number of situations, feeling deeply gratified whenever I said the right things with kindness, sincerity, and humility. It reinforced the belief that I am a good person. I did good, therefore I am good. When I messed up, my conscience stung me into a sleepless night or two. That kept me in line a good deal of the time. But I felt deeply flawed. Socially disabled, you might say. That was a word I never used during those pre-MS days. Looking back, I now realize how limited I‘ve always felt. Back then, I just wished I could be a better communicator.
Conformity helps us move more easily through the world.
Wanting to master social politics is a sign of health and good will. It makes us feel normal, that we belong. It makes others feel safe to be with us, reinforcing a much-needed illusion that the world is an ordered place. We can thrive and be happy as long as we follow the rules. Law and order, family loyalty, and common values all work together to grease the wheels of that reliable old choo-choo called social convention. Practicing good manners and learning proper etiquette for christenings, weddings and funerals bonds us in a common purpose. It makes perfect sense to follow the same script as our neighbors. We all share the same burdens, life passages, gains and losses. When we behave well, we are accepted and rewarded with like behavior. Our pride swells accordingly. We are treated with dignity. We comport ourselves with dignity. We know the rules, we follow them, our tickets get punched, and we’re invited to come back again real soon. Life is beautiful.
Chronic illness makes conformity very difficult.
Chronic illness shatters the illusion of order. In the beginning, the line blurs between science fact and fiction. We feel as if something slithered into an open window one night and took over our bodies, like those poor souls in INVASION OF THE BODY SNATCHERS (1956) where Kevin McCarthy discovers his neighbors have been taken over by space vegetables, except they look, sound, and behave like their human hosts. He had one heck of a time convincing his skeptical neighbors. With MS, though, we play out a little twist on that premise. It is we who are the cosmic Brussels sprouts, trying to explain that we look like our normal selves on the outside, but on the inside we photosynthesize in the sunlight, turn water and carbon dioxide into crunchy green salad stuff, and produce oxygen as a waste product. Wouldn’t it be cool if science discovered the cause of MS is a single gene mutation that really does turn us into vegetable matter? We could help reverse global warming and save the planet!
But, back to the real world. What is that, exactly? At the beginning of this narrative, I described the world as we once knew it, before MS (BMS). Now it’s after MS (AMS). Say we’ve weathered a diagnosis and can still work. Once again in the world, at work, the bank, the grocery store, we see that things haven’t changed. But we have. It’s like coming back from three tours of duty in an interior war zone, rattled by loud artillery fire, our brains smacked against our skulls in mortar blasts. We’ve slept in damp jungles, crawled to the latrine late at night. Medics pushed IVs and fed us pain pills, doing emergency first aid under fire. At times we were incontinent, or paralyzed, too weak to do anything about it without help. Dignity fell away at the same moment pride deflated and flopped around in the grass. Now we are expected to put all that aside and pretend again, just like we used to. We can’t, of course. The thought of resurrecting our dignity seems as far-fetched as Dr. Frankenstein reanimating dead tissue. We can take some inspiration from the mad doctor, though. He shook his fist at God, convinced he could thwart the finality of decay. He failed. But we don’t have to.
D is for Dignity
We’ll succeed because restoring dignity is not at all like reanimating dead tissue. Our dignity didn’t die. It just shrank to the size of a molar. We hid it under our pillows, waiting for the tooth fairy to take it off our hands in exchange for hard coin. If it seems as though we make out better in the deal, it’s only because we think that lump of calcified dignity has lost its value. But we’re wrong.
How do we restore dignity?
We can restore dignity with some prosthetic help. Like a dental implant, we can attach synthetic material to the original bone. It looks like the real thing to other people, but we know better. At first, we’re bummed that this phony dignity doesn’t quite feel or look the way it did before. Soon enough, the day will come when we can’t remember what the original felt like. It doesn’t matter now anyway. We can’t remember what our bodies used to feel like, either.
We are more than just a moist sack of dysfunctional organs. We also possess the instinct to survive. We must embrace our oneness before we can thrive in the company of others. If we are alive, we have a living core of dignity. Let’s nurture it together.