I have been and still am a seeker, but I have ceased to question stars and books; I have begun to listen to the teaching my blood whispers to me.
-Hermann Hesse, Demian
One of the biggest problems I have with the way autoimmune conditions are treated today is the language around them. People tend to go through several doctors before getting an autoimmune diagnosis, and often, understandably, hope that the naming of what’s ailing them will be the first signpost on the road to healing. But in fact, the naming can sometimes do more damage than good. More often than not, upon receiving our first autoimmune diagnosis we are told: “your body is attacking itself”. And thus, we are pitted against ourselves from the get-go.
Some may say, “they’re only words,” but I beg to differ. As Maya Angelou said, “words are things” and it’s those very things that lay the foundation of our belief systems, our worldviews and our ideas about ourselves. When we feel betrayed by some part of ourselves the tendency is to feel like those parts of us must be silenced or disowned.
I’ve been thinking lately about the word remember. Re-membering is the opposite of dis-membering. That means remembering is an act of putting back together again, becoming a whole. For me, an essential part of healing has been the willingness to re-member: who I’ve been, how I’ve hurt, what I’ve lost and gained. There are plenty of pictures of me when I’m at my sickest, with a swollen face and weight gain from high doses of steroids that I strategically deleted from facebook, that I never wanted to see again, that I would have loved to burn en masse– I wanted to censor my own story. I didn’t want those parts because they hurt. They hurt at the time and they hurt to recall.
Hard times can feel like a haunting. Sometimes I’ve even felt like just the act of remembering would be enough to bring sickness back into my body. On top of that, there is, no doubt, a spectral quality to autoimmune illnesses. One often doesn’t know when symptoms will return or in what form. Even in times of health, there can be a looming sense of something lurking in the shadows, ready to pounce at any moment. There is an old folk belief that I always think of when I feel this way. It’s helped me tremendously: If you ever run into a ghost, you must not run away, but rather, walk through it. For ghosts feed on fear and they grow exactly in proportion to it. The more fear you feel and the farther you run away, the larger and more dangerous the ghost will become. I’ve been making an effort these days to “walk through my ghosts” so to speak. And I find that when I look them in the eye, they usually have something invaluable to tell me.
Our whole history as well as our present make up the multifaceted people that we are, even when those histories include traumas that we wish we could undo. Sometimes we need to look back on our own stories and dwell in those times that were most difficult simply because we haven’t yet allowed ourselves a chance to grieve. We live in a culture where strong and brave is synonymous with not fully feeling. I spent years of my life feeling a great sense of pride that “I never let my illness stop me”. For example, 9 years ago when I was 20, I went road tripping through Argentina while I was on a chemotherapeutic drug for Minimal Change Nephrotic Syndrome (yes it’s a mouthful). My doctor had instructed me to drink at least 4 liters of water a day to avoid bladder toxicity. The car was always crowded with empty water bottles blocking the stick shift and the view out the back window and I probably peed on every scenic location in the country. I look skinny, and a little grey in pictures from that trip, but proud. And I still am proud, in a way, and I do think I was brave, but now I realize that there is a consequence of powering through: I lost touch with my body. My physical and emotional sensations became my enemies. They were to be hidden and suppressed at all costs.
It was only after years and years of desperately working to pass as a healthy person that I realized I needed to acknowledge my feelings… all of them, if I was going to really heal. I realized I’d been so totally thorough that even people who I considered close friends didn’t know I’d been struggling with a kidney disease for the entire time we’d known each other. All they knew was that I didn’t eat what they did at mealtimes and, for the most part, they just thought I was allergic to a few foods.
A couple years ago I read this in Joan Didion’s Slouching Toward Bethlehem. Somehow, it was just the right moment and it hit me in just the right spot. It’s one of the things that helped wake me up to this dis-membering problem:
“…I think we are well-advised to keep on nodding terms with the people we used to be, whether we find them attractive company or not. Otherwise they turn up unannounced and surprise us, come hammering on the mind’s door at 4 a.m. of a bad night and demand to know who deserted them, who betrayed them, who is going to make amends. We forget all too soon the things we thought we could never forget. We forget the loves and the betrayals alike, forget what we whispered and what we screamed, forget who we were.”
And I realized, AHA, its not my body that betrays me, I betray myself every time I try to do away with the parts of me that I find painful, unattractive, undesirable, weak.
Where did I get the idea that being stoic and silent was the best way to be strong? Modern medicine suggests that we amputate, shut up, or extract what we’ve identified as the problem. That we must “overcome” or “defeat” our illnesses and our wounds. Take a pill, cut it out, burn it off, etc. But what if our symptoms have something to tell us? What if every articulation of our bodies, minds and spirits, pleasurable or painful, light or dark, were a message spoken in a perfect language? In this time when we have so many unanswered questions, the danger is not that our symptoms speak, the danger is not listening to what they have to say.