Dear healthy people,
Let me tell you about becoming a “sickbody.” I have Ankylosing Spondylitis. Right, just don’t even try to pronounce that. We’ll stick with calling it A.S., yeah? Really all you need to know about it for this blog post is that it’s a chronic autoinflammatory disease. I’ll share a link at the end for you to read more about it. (Here’s a distracting picture of me to help you along)
I am watching myself transform from a healthy, young, active, invincible woman to a sick, grumpy, defeated, disabled, immobile, needy person. I know what it’s like on both sides now – I’m on top of the fence. I’m at a tipping point and I know which way I’m tipping. What goes up must come down. My fence has a greener side, definitely, but the other side of the fence is perpetually somewhere I’ve already been and can never return. My fence is a prison wall and I have multiple life sentences. I’m not getting out of this alive. It’s all downhill from here, you better believe it. Happy birthday, here’s another pain pill. Ready for narcotics yet? What about steroids? How’s your infusion this month? Oops, those side effects really took about a week of functioning from you, let’s try a new drug before that last one leaves your system and hope for the best. We’re playing the medication dart board: bull’s eye on that last drug cocktail!
I can see it now, I’m becoming that grumpy old woman with resting bitch face to hide the hideous pain. I’m becoming that woman everyone feels sorry for and others don’t know how to approach because she might explode.
How terrifying to become something we’re all afraid of.
I emit solid grunts and gasps of masked pain and now it’s happening startlingly unbeknownst to me in public spaces. It’s like a fart you don’t realize you let out in a crowded elevator. Who DID that horrendous thing? I’m sharing my vulnerability without choice, with people who do not know me, whose only duty is to hold or withhold judgment of this masked-pain crusader. I am a warrior in my own mirror, but society is not a mirror. In my own space I occupy, I am a saint, I am a god, I am constantly overcoming or succumbing. But to the crowds, the masses, the hoi polloi, I am a poor wretched soul who needs to suck it up and shut it up. People have cancer, for crying out loud, you don’t matter as much. Big brother is watching and you don’t look sick and you’re too young for disability, why don’t you leave that for the people who really deserve it. Suck it up and go find a job (you’ll be dead in ten years). (Here’s a picture showing how I feel about that)
Many of us you see who are broken, you know us only in our current brokenness. But remember, many of us once were full of life, full of vigor and energy. Remember, many of us still recall the days we had full control and freedom with our bodies. We desired everything and still believed nothing could keep us from being professional soccer players, chefs, teachers, doctors, parents, ballerinas…
Remember when you see us that we once were like you, healthy and full. Remember that we still remember what we’ve lost. Remember we still have hopes and wishes and dreams, and they are no less important, no less meaningful, and no less worthy than yours.
We love. We dream. We hope. We fight. We need. We survive. We succeed and fail. We live. Love us.
We hide the pain because it’s stigmatized, but also because we want to hide from ourselves. These bodies, our bodies, get so heavy we just want them gone. We want to get away from our own prison walls that we did not choose. Our sentences are binding, prophetic, and soul-wrenching. We often wonder what crime we could have committed in our mother’s womb to invite lifelong pain and degeneration. Fairness is a big deal and we battle the meaning of fair with every breath. Why us?
Our tears bathe silent pillows when the world is sleeping. Our cries go unheard when we try to recount them in the cold, sterile, institutional exam rooms we visit too frequently. Home is a white paper covered cot with pokes and prods and needles to track the progression of our losses. Home is where the heart is – broken and beating frantically in our throats during the MRI results. Our second shifts (if we can work at all) are the lunch hours and after-hours we spend on hold with pharmacies, doctors, insurance companies, or waiting in long lines for urgent care or a new prescription that will take full weeks of our lives away from complicated and frightfully severe side effects. Our vulnerabilities lie dormant until we stand, embarrassed and demoralized, in a crowded room to beg for some quiet because our head is spinning; or when we place ourselves in front of a congregation of people and ask someone to please drive us home right now because we’re sick, so sick.
We, the people, fight in elections for our own versions of political and social progress while we, the chronically ill, stage losing fights in our sleep for disease regression and a return to our traditional bodies. We want an end to this gut-wrenching, spine-aching, head-spinning, disabling gift of our precious sickbodies. The concept of “mind over matter” muddles with the unpredictable, calculated precision of autoimmune inflammation causing kyphosis and iritis and spasms and 28-years-old-turning-74-next-month. We are still alive but we grieve the loss of who we were before this weight of helplessness and disease was inserted into our chest, our brains, our backs, our hearts. We have been blessed with the curse of witnessing and grieving our own symbolic deaths as we learn to be something or someone we never imagined we’d see in the mirror. We learn to see ourselves from the outside looking in (while desperately peeking outward) because we are strangers in these new bodies and we may never know how to inhabit their unpredictability. If the pain doesn’t take your body the side effects of the pain medication will.
We are not strong, we are not admirable, we are not role models because we woke up and chose to be. We are strong, admirable role models because we have no choice but to fight for sanity and purpose every day of our lives, with every beat of our heart, with every step of our feet or our cane or our walker or our wheels. What we do is not commendable because our career dream as a third grader was to become a chronically ill warrior. What we do is commendable because we do not give up the fight against what we did not choose to become. Because we have two choices: give up or fight.
Be with us. Remain with us. We were once leaders, friends, professionals. We did not change, our bodies did. We are leaders, friends, professionals. We are sickbodies, and we’re here until we’re gone.
To learn more about Ankylosing Spondylitis, check out the Spondylitis Association of America website.