Dispatch #10: A Tale of EEGs, Pt II

As a complement to a recently completed Chronic Disease Self-Management Program (CDSMP) class, I've challenged myself to spend time outdoors every day in May and journal the experience. If you check navigation (at the bottom of the page if you are visiting on tablet or desktop; at the top for mobile), you will see a new page entitled, "May Challenge." Please feel free to check it out!

Once, during COVID, my best friend (also my housemate) and I both got sick. We both went to the same Patient First, at the same time. We had similar symptoms. We were even in neighboring exam rooms and chatted through the walls while we were waiting. When the test results came back, not surprisingly, we had the same diagnosis: flu with bronchitis. But our clinic experiences were very different. I was admitted faster, seen sooner, and received an X-Ray, which Deborah was not offered. Deborah, who is rarely sick, felt the need to analyze this experience afterwards. What made the difference? Her opinion was that I was simply better at looking sick. She had a point. My cough was not shy. Hers was much less assertive. But I thought the real difference lay in what we had told the receptionists. Deborah had told the lady she had a cold and needed a note from the doctor verifying it wasn’t COVID in order to go back to work. One booth over, I gave another lady a comprehensive list of symptoms. No assumptions. We, the patients, framed our problems differently. Our community, the healthcare providers, therefore treated our problems differently. This is not unusual. Being a good patient is a skill. It takes experience, practice, awareness and a certain amount of assertiveness. Hospitals and doctor’s offices are staffed with people who are often overwhelmed and suffering from burnout. They cannot read your mind. They also belong to a subculture that has a very definite way of thinking and seeing the world. Like all of us, they sometimes need the information presented in a way that makes sense to them. This is not just about self-advocacy. This is about acknowledging and accepting that as someone with a chronic disease, you are part of a larger community that includes your doctors, nurses, insurance providers and anyone else you rely on for medical care. Support your community—by learning to help them help you. To the patients that are exhausted and feel that this is not taking their difficulties into account—I hear you. This is meant to be encouragement, not one more standard that you’re not able to meet. The small things matter. You have more control than you think. To the extent that you are able at a particular point in time (heaven knows that varies!), what are the things you can do to help make things happen? Whether it’s remembering to give your medical record number when requesting a medication refill (yes, that was me!), or responding sympathetically rather than with hostility when an overwhelmed support person makes an honest mistake, you can make a difference in their lives as well as in your own patient experience by learning to see the system as a system, and the people as people. Your meds are supposed to get refilled. Did you verify that happened? Did you follow up with your insurance company to make sure that EEG is covered? Did you make sure the DMV waiver allowing you to drive was signed by your doctor and sent before its deadline? Did you create a pre-appointment checklist or bring notes on things to bring up with your neurologist? Have you been proactive about trying to save money for emergencies? What framing does your neurologist hear? What does he or she not hear? I actually read a medical memoir or two to see things from a doctor’s perspective. It was surprisingly helpful. We can be creative. We are always capable of more than we think.

Thirty-six years old. Entering another hospital for another EEG. I didn’t know it yet, but it would be my last. I skipped down the steps to the hospital’s ground floor wondering what this EEG would say. Would there be any more sub-clinical seizure activity? Was my head really fixed? My feet hit the bottom of the stairs and I walked into my past. Greenish-beige walls. An elevator. The feel of air against my face and soft, urgent voices as I was sped on a stretcher along a hospital corridor. The chilliness of the air as I emerged from a seizure while being carried out of the house on a stretcher. My mother’s panicked voice. My dad talking to the EMTs and the slam of the ambulance door as I realized I was going to be left alone in the back of the ambulance with two EMTs I didn’t know. The vibration of the ambulance floor as I lay on it. The staticky sound of EMTs talking through the intercom. It was my first tonic-clonic seizure. I was 16. The twenty-year road to my final EEG did not begin with my first tonic-clonic seizure. I was diagnosed a year before, with Juvenile Absence Epilepsy (JAE). I still remember my very first EEG. I was about 15 and thought the whole procedure was wildly exciting. Electrodes were attached to my head with glue, and then hooked up to a machine that spat out red-lined graph paper with multiple lines of black squiggles. The glue was very cold, but having electrodes attached to my head made me look like a very long octopus (or so I hoped). The tech on duty indulgently answered question after question until finally promising me a piece of the EEG for My Very Own if I would lie still and stop messing up his results by trying to see over his shoulder. Suitably bribed, I settled down. At the end of the EEG, I was awarded my piece of red graph paper—and shown the two drawn x’s where the tech had caught absence seizures, moments where (as best I recall) multiple lines on the graph had spiked simultaneously in the same way. Proof that my absent-mindedness was actually epilepsy. At fifteen, it was just a data point. I was more interested in my next library visit.

A friend once asked me if I would write a memoir. I told her, “No.” She asked why not. I told her, “because I’m afraid the thesis would be something like, ‘smart aleck hits life. Life hits back!’” This is not a flattering narrative. But all the same—I am grateful. Without my struggles, I’d be smaller and unhappier. As a kid, I was your quintessential bookworm. While my sister was out climbing trees and breaking limbs, I was combing the local library in search of books I hadn’t read. I catalogued people based on categories in psychology books but rarely engaged with them as people. Human beings were illogical, irrational and unpredictable. Stories made sense. Logic made sense. Figuring people out was for someone with a different kind of brain. Left to my own devices, I might have gotten my Ph.D. and found a small niche somewhere that allowed me to avoid people. But in my second year of graduate school, my ability to read books that contained complex arguments or organize a paper began to decline. First slowly, then more quickly, my work deteriorated. My ability to concentrate on a conversation and sleep deeply were also affected. My condition spiraled until I was lucky to finish my thesis and graduate. I was accepted for a doctoral degree, but staring at the schedule for an offered teaching assistantship, I had to admit that I was no longer capable of the work. It wasn’t just the end of a dream. When I gave up on that dream, I also gave up on a version of myself as the absent-minded professor. I literally lived in my parent’s attic, re-reading books I had read before because I often couldn’t comprehend or remember a new one. I was living the life of a zombie. Neither alive nor dead. My world narrowed to the four walls of my parents’ attic and the small, rectangular room where I worked part-time, entering data and scanning documents. I still remember the turning point—walking my laundry up the stairs. Inside the house it was dark, but someone had left the front door open and the sun was shining on green grass. It was a Plato moment. I was in the shadow cave and all I had to do to live again was go outside. My angst, boredom and shame were to some extent a personal choice—the decision not to change. Stopping, I promised myself that I would take the next opportunity I could to get out of the house, no matter how out of my box it was. The next morning, I was sitting at breakfast when my sister casually mentioned that she was thinking of joining a fitness program called Seal Team PT. Fitness and PT were my sister’s hobby, and normally I would have listened with half an ear. This time, I shocked everyone (including myself) by asking if I could come too. “Sure,” Eden said. “But be aware, in order to get there on time, we’ll have to leave at 5 am.” Despite this daunting statement, I signed up. Seal Team PT was intense. They started you off with a week-long boot camp, complete with running, pushups and motivational yelling. The first day, I wasn’t able to complete the training run. Next day, I brought water with me. I finished the run. To my astonishment, this small exercise in problem solving led to a public commendation when I graduated. The instructors didn’t care about my physical weakness—they cared that I finished the program despite it. It was the first time I’d excelled at anything physical. Much to my surprise, Seal Team PT became something I looked forward to. Rolling on the grass, running at 6 AM, and doing pushups in the rain were fun. I went to the team social gatherings, learned to mingle, and began to investigate the species homo sapiens for the first time. My physical problems still weren’t solved. My life still needed to change. But I was learning that adaptability was a skill—and I was good at it.

Dating after Divorce: A Single's Guide

I’m a product of conservative homeschool culture. Not fundamentalist culture—for anyone out there that’s not a part of that subculture: there’s a difference between the two. I was encouraged to go to college, and was never told that having a career wasn’t a perfectly reasonable thing for a woman to do. I loved being homeschooled. For the most part, it meant I did my own thing, did it when I wanted to and the way I wanted to do it. I learned far more that way than I would have in a classroom. When I was in my early teens and twenties, the fashionable method of “Christian dating” among my peers was called courtship, from Joshua Harris’ I Kissed Dating Goodbye. The basic idea is—don’t date unless you’re interested enough and established enough to be considering getting married. When you are ready to get serious, make sure you have parental supervision. Lastly, don’t kiss until your wedding day. The book was a heaven-sent relief to lots of panicked parents whose kids were hitting their teen years. It was popular enough that the college I went to required that you have your father’s permission in order to hold hands with a member of the opposite sex. But it made it more difficult to become comfortable relating to people of the opposite sex. Unless you were in a group you weren’t supposed to hang out with someone who wasn’t of the same gender. It also tended to put more emphasis on process over relational maturity. “Did you follow Joshua Harris’ book?” was a more important question than “did you demonstrate that you knew how to argue, make up, settle differences, play and work together?” Many couples followed the rules and went on to have successful and happy marriages. Others followed it and didn’t. Others, like me, hate it with a hearty passion. I’ve noticed there’s a secular variant on this that sets off my Courtship PTSD. To this day, I can’t help but twitch uncomfortably when a guy who seems interested but hasn’t yet asked me out trots out what I’ve begun to call a “pre-flight checklist”. Half a dozen resume-style questions about where I work, what my future plans are, and if they’re planning to move, a question about whether I’m willing to switch jobs/live in a different area of the country—hypothetically, of course. I know the questions aren't unreasonable. Why start a relationship that may not have a future when just a few questions will tell them if their basic checklist is covered? They just don’t realize there’s a small, homeschooled part of me screaming, “Please don’t ask me to decide if I’m ready for the altar before we’ve even had coffee!” Sometimes I just panic. Sometimes I decide, “when in Rome… if they’re asking long-term questions maybe I should ask mine!” Mine are not resume-style questions. Mine are questions about someone's faith. Not their politics. Not their resume. And in my book the answers are only relevant if you’re thinking about giving me a ring. Any time before that—it’s simply not relevant. The "pre-flight checklist" has just coaxed me into bad process. And I hate that because now old habits trip me up and I start slipping into the trap of seeing the guy as a "prospect" rather than a person. Relationships are about persons. Process matters but the heart of connection comes from the Trinity. We need our dating lives to reflect that.

When I started this post, I thought it was going to be about the nature of happiness. Unfortunately, Dante and tea are currently connected in my head and I needed to figure out how. So...here is yet another dispatch on the nature of tea. In the Paradiso, Dante says of his vision of the Trinity: …my gaze more boldness yet assumed Till to the Infinite Good at last had won. In that abyss I saw how love held bound Into one volume all the leaves whose flight Is scattered through the universe around; …That light doth so transform a man’s whole bent That never to another sight or thought Would he surrender, with his own consent; For everything the will has ever sought Is gathered there, and there is every quest Made perfect, which apart from it falls short. …High phantasy lost power and here broke off; Yet, as a wheel moves smoothly, free from jars, My will and my desire were turned by love, The love that that moves the sun and the other stars. [1] What does it mean for God to be “the love that moves the sun and the other stars?” Growing up, my definition of Him was closer to the First Judge, the God of Law and Order who defines what it means to be good and gives shape and meaning to the moral universe. But Dante’s observation seems much more in keeping with the personal God who died for His creation, declared that He wanted son-service not slave-service, and descended to hell to free the damned. For Dante, God’s love transforms and gives a new direction to Dante’s will and desires just as He gives shape and movement to the universe itself. In Medieval cosmogony, the universe consisted of a series of circles, growing ever smaller until you reached the center. The fact that Earth was in the center circle did not negate the fact that it was the smallest circle. This is where tea and Dante intersect. Tea is symbolic of being, and the circular teacup emphasizes its unity and harmony. A small circle is still a circle, with the meaning and symbolism intact. We may not believe in the Medieval idea that the Primum Mobile—the outermost and highest circle of the universe—is moved by the love of God, but we can still learn from the idea itself. Contentment is a state of fullness—a still center from which we move. In this way, tea can become sacramental—filling ourselves with the love of the Heart of the Universe Himself. Dante translation by Dorothy Sayers. Photo courtesy of Good Free Photos and Unsplash.

Teacups don’t stack very well. It’s something I notice every time I unload the dishwasher. It always feels as though they occupy all the available space plus one cup. They are round, wide and fit badly in rectangular cupboards. Very irritating. But their circular character seems appropriate to their nature. As we discussed, a circle is a mandala. It symbolizes wholeness, unity and perfection. Whether it’s a full-blown Japanese tea ceremony or the stereotypical British offer of tea whenever someone is upset, tea symbolizes being, not doing. It’s a moment for slowing down, and existing (for a moment) without reference to your to-do list. Coffee, on the other hand, is a classic symbol of America’s turbocharged version of the Protestant work ethic. If you do not need caffeine in order to get through your day, you are not doing your job well enough. You actually slept enough that you don’t need caffeine to keep you awake? Slacker! You will be cast into the outer darkness where there is weeping and wailing and gnashing of teeth. Coffee definitely symbolizes doing over being. Since I’m coming from a place of near burnout, coffee currently feels like the “enemy,” but if it’s an enemy, it’s one I created for myself. Trying to meet or exceed everyone’s benchmarks plus my own left me nervy, depressed, anxious and living off a diet of skittles and Cheez-its. That’s no one’s idea of the good life! So I’m going back to my basic assumptions. What is the good life? How do I avoid the spiral of adding one habit or project after another until I crash and burn? Focus! Yes, of course. But how do you decide what you focus on? Priorities! Yes, that’s what I’m saying. How do you replace everyone else’s idea of what you should want with your own? Goals! Yup. Trust me. I’ve got them. Lots of them. I snack on self-help literature and get so worked up about reaching the next goal that I don’t stop to acknowledge it when I complete the current one. But are they the right ones? How do you know? What’s the appropriate process? And when, in all this doing, do I actually start living? And how is that defined? And how do you know when to say yes or no without relying on common consensus?  This is a familiar mental rant. At this point in the process, I generally stop, take a deep breath and say, “it can’t be this hard.” Actually, now that I’ve read my previous post, it can be. This is part of the process of learning who and what you are—choosing who and what you aren’t.

As an Anglican, my life is supposed to be governed by the Church calendar. Christmas follows Advent, Lent follows Epiphany and Holy Week leads up to Easter. In practice, this is hit or miss, but it encourages me to see the world through more than one lense: the sacred becomes a fourth dimension, giving meaning and depth to the mundane. Another way of looking at it is that we live our life in metaphor, our bodies living out the original dance of creation in everyday life. So maybe it’s not surprising that when I look at geometry, I see the philosophy of ideas, and the way our lives often do not reflect our theology. We associate the circle with unity. A perfect circle. Perfect harmony. Perfect oneness. The goal of every idealist, the desire of every romantic, the prayer of every mystic. But the traditional symbols of Christianity are actually built on another symbol: the mandorla. A classic Venn diagram consists of two interlocked circles: a mandorla is the shaded space where the two circles overlap. The almond shaped crest of the medieval church, the gables of many cathedrals, the frame of many a medieval painting, the mandorla is actually an in-between space. It’s the unity of two opposites. And the triniquetra or trinity knot, one of the most familiar symbols of the trinity, is a set of three interconnected mandorlas. Why? What does a mandorla have that a circle does not? A mandorla is a reconciliation. In ordinary life, we see this all the time. Order and chaos, the sacred and the profane, time vs. eternity, male vs. female—the list is practically infinite. Reconciliation requires living in creative tension. As citizens of a liberal democracy, we experience this every election cycle. Living together in a free community requires reconciling the rights of the individual and the rights of the majority, scarce constraints with idealism, and justice with mercy. Perfect solutions are few, chaos is normal, and order is often not justice so much as the least unjust of the available options. It seems a far cry from the beauty and purity and wholeness of the circle. It’s also a place where people grow through everlastingly, painstakingly, infuriatingly, sitting inside an imperfect situation until something imperfect but alive grows out of it. Ahem. As I said--often our theology is better than our practice. The trinity knot says that wholeness and perfection are found through reconciliation. God reconciles us to ourselves, to each other and to him; we practice this reconciliation daily as we struggle to reconcile the various oppositions in our own lives and bring them into a coherent relationship to God Himself: mandorla to circle to mandorla again. Celtic knot image courtesy of Phillip Barrington and Pixibay.