Ignotum per Ignotius
by Ellen Balka
As I sat down in my blue leather smaller-than-they-usually-are lazy girl chair in front of the window, I feasted on the view of the Burrard Inlet and the North Shore mountains. The mountains tower over the narrow strip of buildings in North Vancouver, sandwiched on the foothill between the inlet and the dense, steep forest that marks the end of the city.
When I reached for my laptop which was sitting on the floor, a book nearby caught my eye. It was one of my copies of the 1934 edition of Roget’s Thesaurus—the one with the barely attached front cover with two hole-puncher holes revealing the brown-tinged first page underneath. Over the years my love of the foreign words and phrases section in the back of the book—which I’ve only seen in the 1934 edition—propelled me to buy multiple copies of the book whenever I came across them. This was my first copy—the one I’d gotten in the late 1970s when I was 20.
Since that first day in the second-hand store in northern California when I’d flipped through the book and came across the Latin phrase Ignotum per Ignotius “the unknown (explained) by the still more unknown,” I’d had a deep love for this book. It wasn’t until I was in my early sixties though that I came to understand why.
Sickness
After a long day that included a flight delay and an hour-long shuttle ride after landing in Halifax, my aunt and I arrived in Lunenburg, Nova Scotia to attend a photography workshop. We fumbled in the dark to find the key the B&B left us and found our rooms as quietly as we could. Despite the 4-hour time difference, we were both more than ready for bed.
Jarred by the alarm, I woke the next morning with an unbearable headache. I dragged myself out of bed, threw on some clothes, took my morning dose of antivirals, scurried downstairs to the breakfast room, and headed straight for the coffee. My aunt was sitting with some others and had nearly finished eating. As I carried my full cup over to where my aunt sat, she began to introduce me. As soon as I opened my mouth to speak, I knew something was wrong.
I took a sip of coffee, set the cup down, and under cover of a full mouth, bought myself some time. Miming, I pointed to my mouth, then the food table, and headed towards it. As I piled my plate with food, I rehearsed in my head how I’d introduce myself to the strangers at the table.
My thoughts, at least, were intact.
By the time I got back to the table, I realized I was in the middle of something I’d experienced a winter or two before, on a chairlift in a storm atop Whistler Mountain. I’d been alone that weekend in Whistler and hadn’t realized until I ran into friends that anything was wrong. “I just can’t seem to string a sentence together,” I’d told them.
This time, my difficulty speaking was much worse.
I took my seat at the table, and tried to speak.
“I…I…I’m Ellen,” I stammered.
I sucked down the coffee, hoping that a lack of caffeine was the source of my vicious headache, or that the coffee would improve my mental function. I was a mess.
“Your aunt told me you are a professor at Simon Fraser University. What do you teach?”
This was not a question that required any thought—I had answered it thousands of times, and it had never posed the slightest challenge. I formed all of the sentences in my head, but when I opened my mouth to speak, I struggled.
“I…I…I am… in the…School of… of… Communication…”
Something was seriously amiss. I shoveled more food into my mouth, stood and signaled that I was heading to the food table, which the staff were now clearing.
I formulated the rest of my response in my head as I returned to my seat. My research area is the social impacts of technology, especially computer technology, and I’ve focused on women’s work, particularly in the health sector. No trouble there. My head was still killing me, but my ability to rehearse what I’d say was intact. I tried to speak again.
“….M-mmm-y…re…search ar-…ar- ..area is …”
My aunt chimed in, “Come on, El, spit it out!”
“Sorry,” I stammered. “I can’t st- str…string …string a sen…tence together... to… today.”
My aunt—then nearly seventy-five—chortled, “you’ve probably had a TIA…. That’s no big deal. Everyone my age has them and often forget what they were going to say. You’ll be good as new tomorrow.”
I was only 53. Although it wasn’t unheard of that someone my age could have a TIA, I didn’t think that was the problem.
My aunt had arrived from Seattle the afternoon before we flew. We weren’t seated together on the plane, so I hadn’t been able to fill her in on my health situation yet.
I’d eaten enough food to take the anti-inflammatory pills, so I shoveled a double dose into my mouth and chased it down with the last of my coffee, wondering if I was going to be okay.
After eating, we went to our rooms in the Victorian house turned B&B, and got ready to go out with our cameras, despite the threat of rain. Once ready and waiting for my aunt, I plopped back down on the bed and entered the search terms “medical term trouble speaking” into my phone. My search yielded 2 results. I chose the more common one—aphasia—and scanned a few links, quickly concluding that I was experiencing expressive aphasia.
I could understand speech, but was completely unable to speak fluently—something I’d only experienced that day on the chairlift. I hadn’t given it a thought since. I couldn’t even remember if it had happened in the winter of 2012 or if it had been early in 2013, before I knew what was wrong with me.
I’d gotten really sick in the fall of 2012. By then, I’d been tracking my seemingly disparate symptoms off and on for years. By early 2013 I figured out that I’d have a herpes outbreak in my mouth (they were pretty well constant by October, 2012), and then I’d get a really bad earache. As soon as the cycle subsided on one side of my mouth, it would start on the other side.
Then, on a stormy ski day over lunch I asked Monte—a doctor—about his practice.
“I see a lot of patients our age with shingles… it isn’t the shingles that is the problem, it is the post-herpetic neuralgia, which is very painful,” he’d said.
When Monte mentioned that shingles—another herpes virus—could cause post-herpetic neuralgia, I wondered if my herpes virus was causing post-herpetic neuralgia, and if that was causing my earaches.
After my lunchtime conversation with Monte about shingles and post-herpetic neuralgia, I called my partner Wendy, who is a nurse. “Do you think that if shingles can cause post-herpetic neuralgia, HSV-1 might too? Both viruses move along the nerves. And if you think it’s possible, what kind of specialist do I need to see?”
“Well, you could try calling the Center for Disease Control (CDC), as they deal with sexually transmissible diseases (STDs), and herpes is an STD,” Wendy suggested.
Buoyed by that thought, I fought—and it was a fight—to see an infectious diseases specialist.
“We don’t see patients,” the CDC told me.
“I need someone who knows how to manage a really, really virulent case of herpes,” I’d pleaded.
After cautioning me that I’d need a referral from my GP to see a specialist (I know!), I went to my GP for a referral to an infectious disease specialist.
I’d gone to my general practitioner (GP) about some of the weird symptoms I’d had. “I’ve been getting debilitating earaches,” I told my GP.
My GP said, “your estuation tube in your ear is probably blocked. Plug your nose and blow out with your mouth closed.”
That hadn’t worked.
“I feel as though the consistency of the roof of my mouth is altered,” I told the GP.
“Some people are just hyper-sensitive about their bodies,” she’d responded.
Although I was already taking antivirals preventatively and still having constant outbreaks, it took 3 visits to get the referral. On the last visit, I refused to leave my GP’s office without an appointment with a specialist. I saw the specialist in April, and he immediately diagnosed me with Ramsay Hunt Syndrome, although my symptoms were not a textbook case. The specialist perscribed higher doses of antivirals on that first visit, and when that didn’t work, he changed the antiviral I was on.
Slowly, I began to get better. I never went back to my GP who had failed for years to take my symptoms seriously.
By the time the aphasia occurred in Nova Scotia, I’d seen the specialist and knew the HSV was serious. Another search yielded a recent article titled Aphasia and herpes virus encephalitis: A case study, and an older article titled Can herpes simplex virus encephalitis cause aphasia? I was pretty sure that my herpes virus was causing the aphasia.
*****
My aunt knocked on the door to let me know she was ready to head out before I could figure out my next steps.
We wandered down the road in picturesque Lunenburg pausing occasionally to take photos of the colorfully painted Victorian houses, small boats and fishing gear in the harbor. We made it to a covered bridge by the time the downpour occurred. We sheltered from the rain on the bridge and pulled on our rain pants before making our way back to a restaurant without getting soaked. Over lunch and more coffee, I filled my aunt in.
“Did I tell you about the struggle I had at work last fall, and how in the middle of it I had a really bad herpes outbreak in my mouth?” I began. My aunt knew I’d had a tough time at work for years, but I hadn’t told her about the herpes and its aftermath. I gave her the reader’s digest of the work trauma.
“The short version is that I worked non-stop on a large grant proposal for eleven weeks. I told my boss I’d need a letter from her and a signature the day after the program was announced, and I stayed in touch with her about it the whole time, but I still didn’t have her signature the day before it was due. The proposal went in at the last possible moment after lots of drama,” I explained. “And I ended up with a horrendous blister inside of the roof of my mouth.” I knew by then I had herpes simplex virus 1 (HSV-1 – the cold sore virus), but I hadn’t had a sore like that since I’d first been diagnosed sixteen years earlier.
Back in my room that evening I had more time to do searches and consider my options. I figured that diagnosing me would likely require an MRI. However, I was ambulatory and functioning too well for anyone to think I might need an MRI. I checked my anti-inflammatory supply, figuring that if I either had encephalitis or was headed there, maybe a steady diet of anti-inflammatories would keep the swelling in my brain down.
The fatigue was like none I’d ever experienced. It was impervious to coffee and unchanged by rest. At times I’d barely been able to stay awake, even after a full night’s sleep. I was happy to go at my aunt’s slower pace; happy when driving rain consigned us to where we were staying. Even happier to get home.
Sick Leave
Back in Vancouver, my specialist referred me for an MRI and put me on sick leave.
“I’ve tried really hard to keep going over the last several months, but it isn’t working,” I told him.
“Yes, I agree,” he said. “We’ll put you on sick leave for 3 months and see how things go after that.”
Relieved and scared, I cried. It had been such a long haul. A year since my herpes had spiraled out of control, six months under the specialist’s care on increasingly higher doses of antivirals.
*****
My 3-month sick leave turned into a 3-year sick leave. My MRI—done 6 weeks after my speech had faltered—had been normal. A seasoned researcher, I’d gone to the literature and learned this wasn’t unusual in cases of herpes. The fatigue and other symptoms waxed and waned, sometimes in relation to my level of activity, and other times randomly.
Although my level of activity was much diminished, I tried to keep moving. The first autumn, many days I could barely force myself up the stairs in my house. On a good day, I was able to ride my bike 5 minutes up the street to go to the library.
I slept.
As the weather began to change, I set my sights on skiing. Wendy had always said “I’ll have to shoot you like a lame horse when you can’t ski anymore,” which perfectly reflected my passion for skiing. Wendy didn’t dare tell me not to ski, but rather wisely cautioned me about not overdoing it.
“Don’t worry,” I told Wendy. “I’ll only go up for a run or two and I’ll stop if I’m tired.” At first, I didn’t even tell my friends I was on the hill, so I’d be free from any expectation I’d ski all day. I’d always been like the energizer bunny, one of the last to quit. Now I’d need to stop as soon as even a hint of fatigue set in. Being outdoors fed my soul though, and I knew I couldn’t give it up. It was a bad snow year, so it was easy to go up for a run or two, have a long lunch with friends, and then quit for the day. And sleep.
During that time, our first grandson was born. My energy was limited and I wasn’t capable of much. But I could walk the block to the #4 bus, take it across town and walk another block to our son and daughter-in-law’s apartment to give our daughter-in-law a break. I still have some value, I thought. I can still look after a 5-month-old. As I put Leo down for a nap one day, I noticed he was transfixed by shadows on the wall in his room. It was magical. I was thrilled that I could fill an important role in our family, just by showing up for a few hours each week. I could still contribute.
My illness was mysterious. The high doses of antivirals—eventually (and likely for the rest of my life) 20 times the normal daily prophylactic dose—finally helped. I was hardly getting sores in my mouth, and when I did, they were usually not as severe as they had been. My earaches and the headaches that followed all but disappeared. I wasn’t walking around with a bottle of anti-inflammatories anymore for debilitating headaches.
I didn’t have full-blown expressive aphasia again, but Wendy and a colleague who is a doctor both noticed that when I got tired my verbal fluency diminished, and my ability to make a point was compromised. Occasionally, Wendy would say, “okay, Ellen, get to the point.” My colleague would politely ask if I was feeling okay.
One evening I was feeling a bit “off,” so when my friend Gail texted me to ask what time I wanted to meet the next morning to ski, I told her I needed to sleep in, and she should go up onto the hill without me. When I woke the next day, I felt ok, and, long after my friends had gone up on the hill, I followed. On my second run, my phone rang when I was in a precarious place. Common wisdom was to get away from there as quickly as possible to avoid being hit by a falling skier from above. I ignored my phone until I was in a safer spot to stop.
My memories after that are spotty: someone asking me if I was ok; skiing down to the lift line and looking to see if my friends were there, unsure if I’d been skiing with them or not; calling Gail and asking if I had been skiing with her (as I often did), and where she was; having Gail tell me to skip the line and get on the chair; my friend Peter telling me I had to go off the hill with the ski patroller. Then later, taking note that my other friend Peter was sitting next to me in the clinic, telling me I’d asked him the same question 67 times. He wasn’t exaggerating.
I was experiencing transient global amnesia, where, for some time, I couldn’t make any new memories. I could remember things from the past—who the prime minister was, when my birthday was—but I retained nothing after my phone rang on the hill. I was stuck in an endless loop fueled by a lack of new memories.
By the end of the day my amnesia had not resolved, so I was put in an ambulance and sent to a hospital in North Vancouver. Wendy brought me more antivirals. In my scattered state, over the phone, I gave Wendy very specific directions to where I’d had a spinal tap—in a different hospital—10 days earlier. Wendy was not impressed—it was not the hospital I had been taken to.
I was discharged the next day, after I began making new memories. I took ten days off from skiing and vowed to never ski alone.
The transient global amnesia led to a new barrage of testing. I had neurology consults, an ECG to rule out a cardiac event, a CAT scan (CT) of the head, an EEG and more. Although herpes is a virus which travels along nerves, up to this point, neurologists hadn’t been terribly interested in me. But the transient global amnesia (TGA) made me a more interesting case for neurology. I was referred for a 5-hour neuro-psychology exam which included interviewing Wendy. My EEG showed that I had unusual brain waves in an area of the brain my specialist told me herpes tends to favour. My neuro-psych exam detailed my brain dysfunction, and ultimately concluded I was “10% disabled.”
When, 2 years later, I had another TGA episode, the friend I was skiing with that day was a doctor who knew about my previous TGA. He got me off of the hill and to the clinic. More testing, another ride in an ambulance to the hospital. More odd brain waves but not anything that anyone thought required any further intervention.
For months that turned into years, my health waxed and waned. I was back in the exam room in my specialist’s office, getting a form filled out for sick leave. “I’m quite discouraged,” I said. “I don’t feel as though I’m getting any better. Last week for several days in a row I slept 20 out of 24 hours a day.”
“I think you may have some sort of post-infectious syndrome,” my specialist said. “We can try you on prednisone, and see if that helps.”
“We tried that at the beginning” I reminded him. “But we reduced my antiviral dose at the time, and I ended up with bumps all over my body.”
We reviewed my past dosing and decided on a trial of a higher dose of prednisone, and my regular (high) dose of antivirals. In a few days, I felt better and did more. My doctor friends cautioned me, “Ellen, they didn’t put you on prednisone just so you would have more energy to go out and wear yourself out.” By then, other doctors in my ski crowd were concerned about the lingering nature of my illness. Like me, they’d never seen herpes act like this. They decided to arrange for a second opinion. I was grateful, though the consult failed to yield new information.
I have chronic, systematic sub-acute HSV-1. No one knew how or why my herpes had gone systemic, or why I need to take 10 grams of antiviral pills daily to barely control it.
The prednisone eventually got me out of bed and more functional. I gained weight and my face blew up, but I wasn’t sleeping twenty hours a day anymore. I had trouble every time I tried reducing the prednisone below a certain point, so the process of getting off of the steroids required very slowly reducing the dose. It took almost a year.
Moving on
If the progress of my recovery was slow, it could only be said that the progress of re-orienting my life in the face of illness was an even more hard-won victory. When I was first on sick leave, I thought it would be short-lived, so I didn’t tell people.
Wendy was impatient with me. “Why don’t you either put a sick leave message on your email or just not look at it?” she demanded.
I was looking for another job. A sick leave notification would send a bad message.
“I don’t want to throw away my future at work,” I responded.
Colleagues asked me to do things, and I cringed with each opportunity I declined. I’d worked so hard to achieve what I had, and now it felt as though the future was seeping out of me. I wondered if I was giving up—throwing it all away.
As days turned into months and then years on sick leave, as I slept through much of life, slowly—like cold molasses being poured—my orientation changed.
One weekend, Wendy returned from visiting friends who had lots of rental property. “Ellen, as you know, I hate renovating. But it occurred to me that we could probably knock our house down and rebuild it as a multiplex. We could live in one unit and rent the others out. I realized we have options if you can’t go back to work,” Wendy offered. We were both excited—we might have a way out, a way forward. I wasn’t thinking of work anymore. Rather, I was thinking about survival, about being alive.
I did eventually regain enough stamina to try returning to work. By then I understood that I’d be going back for financial reasons and that I’d go back in a way that was far less engaged than I had been in my work before my illness.
As a child of the 1960s, the adage that if you’re not part of the solution, you’re part of the problem hung in the air around me like fog. Being disengaged at work pitched me into a moral dilemma. I wasn’t sure I’d be able to navigate work as a less engaged contributor. I also wasn’t sure I’d be able to return to work as far as my health was concerned. But I wanted to try.
Ignotum per Ignotius Revisited
Two years after returning to work I submitted my retirement plans, which included a long and gradual off-ramp from my career. I began pursuing creative writing. One day, I found myself writing about my collection of 1934 Roget’s thesauruses. I’d bought my first copy when a friend and I had gotten stuck while hitchhiking to Yosemite for a rock-climbing trip. We’d been cautioned not to take a ride that let us off in northern California, but we hadn’t heeded the warning and got stuck in a dusty small northern California town. We’d been dropped off on the main street, just in front of a thrift store. The day was hot, and traffic slow. We took turns going inside to escape the heat and browse. When I came across the “Foreign Words and Phrases” section in the Roget’s, I knew the moment my eyes moved over the translation of Ignotum per Ignotius that I’d return to the heat of the day with that book in hand. It was, admittedly, a strange acquisition for someone who would be living out of a backpack and camping for 3 months. But I bought it anyway.
Later on that trip, I was hanging out in my friend Catherine’s van. We were deep into a conversation about something, and Catherine posed a question. “Give me a second,” I said. “I have the answer.” I leaned over and rummaged in the top of my pack where the old and brittle Roget’s could safely travel flat, inside a plastic bag, protected from the weather and climbing gear stuffed in the main part of the pack. I unearthed my prized package, and in the most deadpan voice I could manage, I said, “the answer to your question is: Ignotum per Ignotius.” After pausing for dramatic effect, I continued: “the unknown (explained) by the still more unknown.” Catherine and I both broke out laughing—the kind of laughter that takes over your whole body.
Catherine appreciated the fun side of me, something she discovered soon after we met. We always laughed when we were together. She was ten years older than I, and she was one of the first adults who appreciated my propensity to dig at things intellectually, to always look for some unexplained phenomenon that an even more obscure idea might explain. We were intellectual volley partners, and she always encouraged me to keep digging.
I realized forty years after buying that first 1934 Roget’s that I’d collected them because they harkened me back to the few core elements of my 20-year-old self which I knew I should never let myself lose sight of. The copies of Roget’s I’d come across and bought over the years were trail cairns. They took me back to the important elements of my youth that the struggles of my adult life had threatened. My old Roget’s served as a reminder of those parts of myself I cherished and had learned to nurture in my earlier self, as I found my way in an occupation that threatened to destroy me, and confronted an illness which nearly killed me.
When I was sick, I read medical literature widely (much of which I didn’t fully understand). The idea of ignotum per ignotius gave me hope and kept me believing I might find answers that would help keep me alive. Ultimately, I got through out of sheer adherence to what the phrase ignotum per ignotius came to mean to me over the years: that “the unknown [can be] (explained) by the still more unknown.” I believed that the atypical trajectory of my illness and odd symptoms would eventually be explained by something not yet known, and this allowed me to figure out what was wrong with me before it killed me. A quick glance at the old Roget’s Thesaurus on my shelf reminded me of my essential self, however bruised and battered a day I’d had.
Eventually I learned that I have a genomic variation which probably means I am not properly metabolizing the antiviral drugs into the chemicals that my body needs to fight herpes. I have to take a much higher dose of antivirals than normal to achieve a barely therapeutic response. That is the unknown part that can be explained. So far there is no remedy for that. The even more unknown part is that it likely relates to an enzyme or protein deficiency which is crucial to metabolize the antivirals. So far, we don’t know which enzyme or protein I lack, or if its production can be stimulated or supplemented. That is the still more unknown part which I hope will someday be explained. In the meantime, the idea that unknowns can be explained by even more unknowns gives me hope.
Ellen Balka is a recovering academic. At the height of her academic career, Ellen became ill with an uncommon response to a common virus and ended up on medical leave for three years. Now semi-retired, Ellen is working on a book-length manuscript about her experiences of living with a very uncommon response to a common virus. She has published one piece of fiction, over a hundred academic articles and book chapters. She has also published one sole-authored book, one co-authored book and co-edited four collections. She lives in Vancouver, BC where she enjoys skiing, biking, photography and time with family.