I am still trying to finish my memoir, having found that the material I left to the end is the most pivotal and difficult to write. It lies at about 3/4 of the way through the manuscript but encompasses time the way big events overshadow the rest of a life. In my last post, I mentioned that I am studying spiritual direction. I promised I would use what I am learning to finish my book, and that I would post something about this process now. But I am still finishing this book–this memoir of the years that led me to study spiritual direction. You might agree that what follows is an appropriate introduction. Whether or not you do, it may be the only pages of this memoir that you will read for a while. And, of course, I have changed names to protect privacy. Privacy…..oh yeah, that’s another thing that makes publishing a memoir difficult. Feel free to weigh in with your comments, and say a prayer for me if you would like to see the book finished (and published) any time soon. Thank you, friends.
Those great wars which the body wages with the mind a slave to it, in the solitude of a bedroom against the assault of fever or the oncome of melancholia, are neglected. Nor is the reason far to seek. To look these things squarely in the face would need the courage of a lion tamer; a robust philosophy; a reason rooted in the bowels of the earth. Short of these, this monster, the body, this miracle, its pain, will soon make us taper into mysticism, or rise, with rapid beats of the wings, into raptures of transcendentalism.
On Being Ill – Virginia Woolf
I am employed part-time at a local food cooperative that became a large store a couple of years ago. Advertising and a large parking lot without potholes brought customers driving new S.U.V.s to buy wrinkle cream with credit cards pulled from leather handbags. Our spacious asphalt is no longer covered by a sea of Subarus bumping up against each other and trading rust, but our store is still staffed in part by working members paid with a discount. It is still furnished with jars and bins of grains, legumes and spices that workers and shoppers scoop into containers and that spill and trail from the soles of shoes as they wind from one end of store to the other, zig-zagging a journey three times longer than in our former warehouse.
I still regularly spot the gray hair of an original owner, or the T-shirt of a young person shopping frugally, flowing past me after visiting the oats. But unless people look for me I often miss them because to pay for this building there are towers of boxed macaroni and cheese, cookies, and body wash hiding me where I work: tucked in a bend in the store’s middle intestine, behind the counter of the Wellness Department.
The Wellness Department is so-called because it is where things in the store other than food that may help you be well reside. These include herbal, vitamin and mineral supplements that MAY HELP with (the Food and Drug Administration says we must not say “will cure”) physical problems. The Wellness Department also contains things that may heal emotions. And as much as profiting from vitamin and herbal supplements, my department thrives on hair-dye, essential oils, and candles.
I enjoy my job because people come to share their deepest or small-but-dear concerns with me there. And though I may only be able to answer their needs a little, their confidences make me feel privileged. In the moments in which I hear them, I feel like a priest, or like God. And being like God is fun when the people whose requests you don’t answer go search online, and you leave work and go home at night.
One evening, a young woman I assumed was in high school, with dark hair in a ponytail and a puffy white winter jacket—the kind that always looks dirty on a kid whether it is or not—came up to the Wellness counter. She looked teary, and I assumed she had a cold when she showed me the vitamin C she had selected and asked if it was a good brand.
I read once somewhere that vitamin C is the supplement Americans take the most. (In Japan, it’s the green superfood chlorella.) They take it like they say the “Our Father” prayer; they seem to think it cures everything while being harmless. And too much vitamin C frees up the bowels as much praying does. The word “bowels” was used by Elizabethans where we might use the word “heart.” In the King James Bible, the seventeenth verse of third chapter of the first epistle of John reads:
But whoso hath this world’s good, and seeth his brother have need, and shutteth up his bowels of compassion from him, how dwelleth the love of God in him?
“Sure, that’s a good brand,” I told her, thinking however good it was, it didn’t matter—a girl would soon get over a cold anyway—she was unlikely to need it to do much for her. People that young usually have strong immune systems and aren’t shopping for supplements. A dandruff shampoo is usually the most medicinal thing they need, and a mother usually selects it while a daughter tries on makeup.
But her mother must have been in another aisle, and I left the counter to help another family locate a favorite shampoo. I noticed the girl continuing to orbit the counter from a distance in the way of customers who remain troubled and grasping for answers, and I heard my co-worker come up and greet her by name. Perhaps the girl knew my co-worker’s teen-aged daughter, and had been waiting around to chat about something with her.
When I returned, the girl still looked young because of the puffy coat, but now, after talking to my co-worker, her face had fallen, and it was sagging as though it belonged to an older woman. She stood still, looking down, as if in shame. There was a strange, helpless silence. My co-worker broke into it when she abdicated the stool by the counter, slipped past me, and said,
“Maybe you should talk to Abby about Lyme disease.”
Everyone knows what happened to me because I make a practice of telling people. One year ago, I published a personal essay in the Advent issue of my church’s quarterly journal revealing I had been sick for years. I had written it one year earlier—the Christmas before. My priest had asked me for cover art for a series of church bulletins for Advent. My essay was an account of my struggle with memory loss while trying to make art again.
The Sunday after it was published, a parishioner approached me during the service and said he had been sick for over a year with Lyme. In all the years we had attended church together we had never spoken to each other, or if we had, I couldn’t remember. But this day, at the Peace, we made a date for coffee hour, and after properly introducing ourselves in the parish hall, we talked for fifteen minutes about our experiences. He said his doctor told him that after one course of antibiotic treatment nothing more could be done. As we got ready to take leave of each other I found myself saying, “You know, depression is the worst symptom of this disease,” and I saw something unlock behind his forehead. His eyes teared up as he looked full into mine. And then Mark told me how he really felt.
And this is how listening to Mark made me feel: like God listening to Jonah praying inside the belly of the whale that had swallowed him.
I had had similar experiences before, but that day with Mark, I decided to not speak of myself as still being sick with Lyme. I can honestly speak of myself as well because the many supplements I swallow and the ills I experience are not debilitating–other than eating or drinking whatever I want I generally do what I please. But mostly I speak of myself as well because my definition of healing has changed. The approach of that solid, proper Episcopalian man terrified by illness reminded me of my own neediness while placing me firmly on the other side of the counter. I had healed into one holding hope: someone whom sick people can see, and who sees and hears them. I had healed into a reminder of healing.
I faced Abby and stilled my body—dropping my shoulders, widening my eyes, and tilting my head slightly—trying to show her I was giving her my full attention. I asked her to tell me about what she was feeling.
“I have Lyme and other infections, too. I have bacteria, I have parasites. I am twenty-one years old. One of my parasitic infections is so new, no one has heard of it, no one has it. The only doctor we could find who treats it is in California. She knows about all kinds of weird micro-organisms—she’s written papers. We meet on the phone—I talk to her every other week. But she’s not here.”
She looked so dejected. I guess I’m here, I thought, and asked, “What about your illness is bothering you the most?”
“I can’t eat anything, nothing at all. A little yogurt makes me throw up. If I eat grains, I get anxiety attacks.”
I remembered the pitch of her voice, and that I heard it years ago from inside my own head. I remembered the physical pain, and also the desperation and shame of being young and unable to feed myself. I remembered the difficulty of giving up going out and eating with family and friends for staying home to learn to care for that self—a colicky baby who refuses to be comforted—who no matter what you feed it, refuses to thrive.
This was a few years before the Lyme travelled from my gastro-intestinal tract to my central nervous system. It took months of pointless tests before I found expensive help, and then more months before I could eat some, but not all, food again. But I was well into my thirties when these things happened to me, and Abby was just a girl. Before my life fell apart, it had contained many more healthy years than Abby’s had. This seemed unjust.
What could I do just to help Abby keep down a few crumbs? How could I even begin to help her see how much she had lost to illness, and what she needed to do to find it? Even her research doctor hadn’t been able to do much for her yet. It would take time. And it would take someone much greater in stature than a poorly paid co-op employee to help Abby—someone, it seemed, approaching the height and breadth of God. And in the face of the Food and Drug Administration, what could I say? It was hubris for me to even try to say anything.
But I would try, because people very sick with Lyme often feel that no one sees or hears them. And after all the sick people I had already seen and heard, I knew I would do it as others had done it for me. I would pay it forward to Abby out of the family fortune—the inheritance of sufferers from tick-borne illness. As with others who have experienced adversity, it seems that often people with tick-borne disease have “bowels of compassion” that have been freed up, and that having been freed, flow freely for others.
“Do you take probiotics to help your gut?” I asked.
“I am afraid to take anything. I react to everything. But I read about vitamin C and thought, maybe.”
“How long have you been ill?” I asked.
“I’ve been sick since I was seven. I have rods in my spine from the infection I got there. I have neurological damage. I don’t even know what it’s feels like to be well—I have been sick as long as I can remember.”
Her face was crumbling apart. I could see there was no pill to help what was being revealed behind it, so I gave up trying to think of one.
“I’m sorry,” she said.
“Hey, it’s okay,” I said.
“My parents are tired of this. Everyone has had enough.”
“I think I know what you mean. People don’t understand because you look good. You are out, you are here right now. You look like a young woman with nothing wrong. And that’s a horrible thing for me to say, because telling someone with Lyme she looks good is the most painful thing you can say to them.”
“Yes!” Abby almost yelled, tears falling. “My father says to me whenever I tell him I’m sick, ‘Well, you look good,’ as though that means anything. I just want to yell and beat him with my fists!”
She no longer looked helpless and dull. Her arms were raised and her eyes were flashing.
“People don’t know that depression is the worst symptom of the disease,” I said.
“Yes. There are certain days—some days I could kill myself.”
I nodded. “How long have you been treating it?”
“Less than a year.”
I tried to smile apologetically because of what I would say next, “Well, after having had it for so many years, you know that’s not very long.”
“Are you less numb now? Are you better at all?” I asked this because I was pretty sure she was. She had energy. She seemed volatile. Five months before talking with Abby, during the week I left my job filling the co-op’s bulk bins to work in the Wellness Department, I broke my left hand while beating a therapist’s couch. This was a year and a half after I had begun taking herbs to heal my central nervous system, which led to emotions and memories pouring back into me in terrifying ways. Based on my own experience, I believed Abby’s disturbance this evening showed she was healing.
“Oh, yes. I mean I go to school. I do things now, after not doing anything for so long.”
I came out from the counter to be closer, because I felt Abby drawing me closer. I told her, “You have to remember that with Lyme, you feel worse before you feel better. When you kill off bacteria, your body gets flooded with toxins, and it makes you feel worse.”
I knew she knew, but I said it anyway. People with tick-borne and central nervous system disease regularly forget what they know, and need friends and family (but often rely on strangers), to remind them.
“So hang in there. It’s a terrible thing to say this, but this disease will make you a much stronger person than you ever would have been without it. Because you have to, you will really get to know yourself.”
“And other people,” Abby said. She was gazing mistily and long into my face. If that look weren’t familiar to me like the pitch of her voice, I would have found it too awkward to bear. “You see them as they really are.”
A severity settled into Abby’s expression. I could see reproof for family, friends, teachers, and doctors who had not seen her as she was. As she gazed into my eyes, I could feel her flooding me with love and gratitude disproportionate to anything I could have said or done for her in the last ten minutes. I looked away, and then she calmed.
When I looked at Abby again, some of her neurological symptoms were obvious. Her eyes had wandered away from each other and her brows were twitching. But after a moment, she aligned them into a burning look which she drove into a space above my forehead. Her voice sounded metered as if chanting with a choir:
“I know I will get well. I know I got sick so I can get well and help other people get well. I know I will help them.”
I smiled at her like a proud parent, returning some of her love. “There is no doubt about that,” I said.
I asked her to ask her doctor about taking chlorella to help her body get rid of toxins so she could feel some relief, and showed her some books. She asked my name and what hours I work, and I told her.
“I’ll come and let you know how I am doing.”
“Please do that, Abby,” I said.
An evening rarely goes by when a customer doesn’t mention Lyme. Since meeting Abby, I have talked to countless sick people: young Episcopal priests who pray in the woods while ticks bite them, spouses trying to take care of each other while going bankrupt, mothers who can’t focus digging in purses for lists of things to help their kids, and men in wheelchairs. But I haven’t seen Abby again.