St. Valentine, the patron saint of lovers, also happens to be the patron saint of epilepsy. I'll admit, those seem like strange, even contradictory, co-causes for patronage. But epilepsy, while not the least bit sexy or romantic, really was the force that kindled the flames of love in my own marriage.
I say that without levity.
I am entirely serious when I say that my epilepsy, though awful and trying, really did bring rise to the most incredible displays of love from my husband.
And it’s not like things weren’t good before my epilepsy diagnosis. He's always been good to me. He’s all about grand, romantic gestures: regular flower deliveries, international vacations, unexpected tickets to concerts I thought were sold out, surprise diamond earrings. And these things are great, beautiful, wonderful—but all of it pales in comparison to the new ways he showed me love after I was diagnosed with epilepsy.
See, it is hugely inconvenient to be married to an epileptic.
It is a complete lifestyle change, for the epileptic and partner both. It requires tremendous sacrifice.
It is a lot of dropping everything to quite literally pick them up off the floor. It’s a lot of last-minute plan changes. It’s a lot of trips to the doctor. It’s a lot of medications with horrible side effects. It’s a lot of MRI’s and EEG’s, followed by a lot of outrageous medical bills. It’s months upon months—or years upon years—of medical cancellations on the epileptic’s driver’s license, which means arranging transportation for things that were so easily taken for granted before: groceries, appointments, haircuts, Target runs. And it is the constant, nagging worry that a seizure could happen at any moment, provoked by even the slightest trigger, one that could even be fatal.
Epilepsy is a thousand pebbles of inconvenience that quickly combine to become an avalanche, and it’s easy to feel buried by their slide.
Epilepsy has proven to be the staunchest test of our marital vows. For better or for worse, in sickness and in health suddenly required real-world implementation, and all the while I’ve watched in awe, eyes wide and jaw slack, as my husband doubled down on his commitment to me.
I did not know the true depth of his love for me until my epilepsy brought it out of him.
I did not know how much I meant to him until I watched him endure these inconveniences on my behalf. Epilepsy stripped away my independence and left me bare in so many ways. It revealed a deeper layer of vulnerability than I was comfortable showing to anyone, even to him. But he has proven himself to me, over and over and over, and I never would have known the true level of his love for me if epilepsy had not forced me to lean into him and allow him to care for me.
Those grand romantic gestures he’s made over the years, the flowers and the diamonds and the vacations, simply cannot hold a candle to the thousands of everyday sacrifices he has consistently made for me over the past nine years. In the end, these simple, ordinary gestures—sitting in a hospital waiting room during my appointments, murmuring words of comfort during my seizures, holding me while I cry in frustration, driving me forty miles to the nearest Target for shampoo and laundry detergent—proved infinitely more romantic than any all-inclusive beachside resort could ever hope to be.
Nothing demands sacrifice quite like sickness.
And nothing says I love you quite like sacrifice.
Maybe that’s the true meaning behind St. Valentine’s strange patronage.
Together, but Separate.
Hands down, my least favorite feeling is uncertainty.
It is awful: having the rug of normalcy yanked out from beneath your feet, feeling like you are no longer in control of your own life, wondering how you’ll ever be able to do...well, anything. Ever again.
Especially when there’s no end in sight.
Right now, we’ve all been thrust into a period of uncertainty, and it's scary.
Uncertainty has the power to hijack your brain and launch your thoughts into a zillion imaginary tragedies that play out in a constant loop in your mind. Often the things you imagine are irrational and worse than what the actual future holds, but uncertainty is a convincing playwright and the mind is a stage primed for action.
I know this all too well.
Epilepsy is a disorder of constant uncertainties, and it set off a montage of catastrophes inside my own head: What if I have another seizure? Another concussion? What if I never get my driver’s license back? What if I end up brain damaged? What if these seizures never stop? These things could kill me. I might die. I.might.die. I. MIGHT. DIE. I.MIGHT.DIE.I.MIGHT.DIE.I.MIGHT.DIE.
On and on and on these thoughts ran, ad nauseam. It took me years to quiet them, but they still have moments of power over me.
However, upon observation, I see now that the most dangerous scenario that turned the hamster wheel of my mind was not the idea that I could die. No, the most dangerous thing I could imagine was this: What if there isn’t enough?
I had a medical cancelation on my driver’s license for four years (2012-2016), and scarcity was my constant companion during that time. My circumstances had changed, but my needs had not. We live five miles from the nearest store, so a car is necessary to run even the simplest of errands. I was stuck at home. I couldn’t go anywhere. I experienced scarcity in tangible ways: there was a very real possibility that I would run out of something I needed before I was able to get a ride to a store to buy more (e.g., toilet paper).
I responded in the only way that made sense at the time: I bought as much toilet paper as I could shove into the bathroom closet at one time, and that little stockpile of white rolls gave me a sense of security, and for a moment, I could breathe again. I felt like I had enough.
This security, however, was short-lived. As soon as a single roll of toilet paper was removed from the cellophane, the rest of the package no longer felt like enough. I started to worry: There isn’t enough anymore. When will I be able to buy more?
This same scenario played out for dozens of items (laundry detergent, noodles, tuna, shampoo, tea), and I was always afraid that there would not be enough of something. I fought tirelessly to outwit the demon of scarcity through overpreparation, by compulsively making schedules, writing lists, arranging rides, ordering in bulk online. But I was still plagued by another lack, one that I couldn’t buy in bulk at Sam’s Club or order online and have shipped to my door.
Loneliness, I learned, is a far more poisonous form of scarcity than a toilet paper shortage.
During my therapy appointment last week (which, thanks to COVID-19, was done via webcam), my therapist asked me how I’m handling this period of “social distancing.” It is a kind thing to wonder in this uncertain time, and I appreciate his concern, but I could only give a wry chuckle when he asked.
Social distancing is not new to me.
Since my epilepsy diagnosis, I have spent a lot of time by myself. I didn’t have a driver’s license for four years (2012 - 2016), and that period was the scariest, darkest time of my life. We had not yet adopted our daughter, and my husband is a farmer who's often gone 12-16 hours a day, so I was entirely alone in our country house. During those long, quiet hours, I found some solace in books, but that’s not the same as human interaction. For most of those four years, nurturing true friendships was hard. I felt so other, so far away, so separate.
Loneliness slipped its own subversive slides into the catastrophe montage that already occupied my headspace. While I fought against physical scarcity in my external world, this invasion happened quietly, slide by irrational slide, and I was flayed daily by a whiplash of my own insecurity: Has everyone forgotten me? Why doesn’t anyone come to visit me? What if I’m not good enough? What if I’m not worth their time/effort/money/energy? Why didn’t they respond to my text message? My email? My phone call? Why am I so alone? Why am I so alone? Why.am.I.so.alone? WHY. AM. I. SO. ALONE? WHY.AM.I.SO.ALONE?WHY.AM.I.SO.ALONE?WHY.AM.I.SO.ALONE?
The scarcity of loneliness feels a lot like suffocation, like not enough air, and even the smallest kindness can feel as refreshing as breath. Sometimes the only thing that snatched me from the brink of despair was a quick phone call from my mom during her drive home from work. Emoji-only text messages from friends were enough to bring me to tears.
Even though they couldn’t always physically be with me, it was so, so good to be remembered. Those who remembered me, who brought me back into the fold of togetherness, literally made it possible for me to survive, and I still count them among my truest friends. These ten-second tokens of compassion felt like enough.
I know what it means to have a health crisis force you to reevaluate every aspect of your life--your needs, your routines, your schedules, your shopping lists--and sort through them to decide what’s crucial and what isn’t, what must stay and what has to go.
Here’s what I learned: toilet paper is important, yes. But it is not as important as waiting for the “all clear” to rebuild your normal. I had to wait for a three-month seizure-free period before I could drive again. It took me four years. It was excruciating, yes. But I see now that it was necessary, because driving before that point could have literally killed someone. (My point: stay home, people!)
Toilet paper is important, yes. So is laundry detergent. And shampoo and noodles and tuna and tea.
But none of that stuff is as important as other people.
Now is a time of being together, but separate.
That is what did me the most good when I was so isolated: I was separate due to my circumstances, but when people reached out to include me from afar, I felt together. Reaching out can stave off loneliness, for giver and recipient alike. (I am still rendered giddy by the sight of a Hallmark card in my mailbox.) And thanks to the miracle of technology, it’s easier than ever to be emotionally close without being physically near.
This too shall pass.
We will all survive this season of uncertainty, together, but separate.
My very first blog entry was about miracles.
When I wrote it, I was so grateful to be alive. Everything felt so fresh and so new because my perspective was sharp: I knew what mattered, and everything that didn't just faded into the background. I’d gotten one giant miracle: I’d had a seizure while driving 70 miles per hour down the Interstate, and
I didn’t kill anyone else, either.
I didn’t even hit anything.
I'd had a feeling just before leaving work that I shouldn’t be driving, which I ignored. (I wasn’t about to let epilepsy stop me from doing anything. I didn't even take the emergency medication I have to help abort a seizure.) Twenty miles in to my forty-mile drive, I had another feeling, a strange sort of knowing, like a voice was telling me that I needed to pull over.
This voice sliced through the lambswool fuzz of the seizure aura in my head, clear and sharp, and this time, I obeyed it.
My husband, too, had a knowing that day. He heard the report of erratic driving on the Interstate and somehow knew it was me, so he got into his truck and raced to the scene. He beat the police there.
So many things converged that day to make one giant, take-your-breath-away miracle.
Praise Jesus, hallelujah.
But time wore on, and the luster of my second chance at life wore off. I lost touch with that part of myself that searched for the miraculous, and when I stopped looking for it, I stopped seeing it. Miracles, I figured, were rare and special, once-in-a-lifetime things. They wouldn’t be miracles if they were ordinary.
I was wrong about that.
I’m starting to understand that miracles can be made of ordinary things, as tiny and mundane as breadcrumbs.
My brain still has a black hole of seizure-damaged scar tissue in it, but I haven’t had a consciousness-impairing seizure in four years. Every night that I am able to lie down in my bed, exhausted from productivity instead of a post-ictal seizure haze, is a miracle.
Even if it is small one.
Four years of small, daily miracles, like manna from heaven.
After nearly a decade of fertility issues, we adopted our daughter Nadia in 2017, after she had been living with us in foster care for two years. I had expected the experience to be another sudden, giant miracle: once the judge banged the gavel and the adoption papers were signed, we would be a family.
And we were.
On paper, at least.
Our daughter has Reactive Attachment Disorder. Because of the neglect she suffered early in life, she didn’t develop normal attachments to a stable caregiver. RAD has a grim prognosis and lifelong complications: stunted growth, emotional disturbances, mental illness, attention deficits, poor peer relationships, and behavioral issues such as lying, defiance, cruelty, aggression, and self-harm. In fact, because RAD adoptions have such a high failure rate (I watched one unravel while I was still teaching), it was recommended to us on more than one occasion that we come up with an “adoption dissolution plan” (which we refused to do).
When we adopted her, I was expecting a giant miracle. This was a dream come true. She was made for us. God had placed her in our family. I could feel it. I knew it. My hope for a beautiful family bond was strong. Her very name seemed to be an almost prophetic thing, coming from the Russian word for hope. We let her choose a second middle name for herself, and, out of all the names that exist, she chose Hope. I didn’t realize at the time that the meanings were redundant: Nadia Annalise Hope. Hope. Graced with God’s Bounty. Hope.
She was surrounded by hope, literally bookended by it.
But this hope grew dim when her Reactive Attachment Disorder only seemed to get worse. As a defense mechanism, RAD kids often try to self-sabotage relationships when they become too close. We have had to work hard to prove ourselves as parents, to prove that we love her and will not abandon her. We have had to earn her love, and she has put us through a frustrating and confusing obstacle course to do so. She usually shrieks or shoves us away when we try to hug her. Our “I love you’s” are rarely returned; she offers us cold shrugs or mumbled “yeah’s” instead. I try to remember what she's been through, but I'm not going to pretend that this sort of rejection doesn't hurt. Still, I tell her at least twice a day that I love her because I know she needs to hear it.
Though she seldom reciprocates the affections we show her in the moment, she does share her love in the ways she knows how, and these moments always catch me by surprise and steal my breath: Crayola masterpieces presented as gifts. Unexpected, bone-crushing, 30-second hugs. Gentle pats on the forehead while I’m lying on the couch, watching TV. Collections of birch paper and branches, given to me because she knows how much I love them. Even a few rare and golden “I love you’s,” though the words are often too loaded with meaning for her to say them without a buffer of some kind: usually her hands cover her face or she speaks in a strange voice that sounds a lot like Christian Bale playing Batman.
Over time, these things—seizure-free days and snuggle-filled nights—became so ordinary that I did not see them for what they truly are: stacks of tiny miracles that had accumulated into…well, one giant miracle.
I mean, it’s not the giant miracle I was expecting, but it is the one I got: not quick, tidy, and whole, but gradual, cumulative, and messy, with a thousand pieces so small that I did not initially see their value because individually, I could not comprehend their worth. One day without a seizure measured against my 37 years of life? Almost nothing. And yet…four straight years of them is something else entirely. One Batman-voice "I love you" every couple months against the two I offer her daily? A grim ratio. Often times, it feels like almost nothing. Yet for a RAD kid, this is huge. Most never even make it that far. These tiny breadcrumbs of love that she scatters for me feed the hope that this adoption is solid, that our love is reciprocal, that we truly are a family.
At first, these breadcrumb miracles felt insubstantial, like they could never actually sustain me, but I see now that they were consistent, daily bread for the last four years of my life. Instead of consuming these crumbs with gratitude and allowing them to fill me, I cast them aside and whined that I was still hungry. It wasn’t until I finally looked at the heap of rejected crumbs that I could see the stunning (and yet unfinished) mosaic I had been given.
An entire feast of breadcrumb miracles.
If I was not nourished by them, it was only because I did not partake.