“He looks within, finds nothing there. Soul-filled smoke fills the air…Control is gone, souls are bound, into an endless night without sound.”
– Henri Landwirth, Founder of Give Kids the World Village, “Gift of Life”
Epilepsy is a funny thing.
Not in the doubled over ha-ha-ha sense. I mean epilepsy can be odd in the way it presents itself. When most people think of epilepsy, they imagine a tonic clonic (grand mal) seizure: a person falling to the ground in it’s iron grip, breath of life squeezed out, every muscle strained to it’s tensile limit, every nerve and sinew shaking uncontrollably. In reality, however, a tonic clonic is only one of dozens of ways seizures can present themselves and sometimes not even the scariest.
While epilepsy takes on different forms which can be largely unpredictable, sometimes identifiable triggers and patterns may emerge. In our daughter’s case, we’d learned that waking, fatigue, and stress were routine seizure triggers. Because of this, we’d planned to spend the entire last day of Mercy’s Wish Trip at Give Kids the World Village, resting. We knew we’d all be tired and need a day off before tackling another full day of travel back home. Most of all, we were concerned about how Mercy would be faring at the end of the long week.
Sometimes, people outside the world of chronic illness perceive preemptive concern as “negative thinking”. They imply that thinking about the detrimental possibilities an illness poses actually causes difficulties by the “negativity” of the proactive consideration itself. But, parents of special needs children don’t have the luxury of believing so mystically or simplistically. Just like every soldier wants their commanding officer to study and prepare for an enemy’s future assault, a special needs child needs their caregiver to not live with their eyes honed only on hoped-for peace treaties. In fact, that’s why people battling illnesses are “fighting” them. They are soldiers. Epilepsy is the enemy. This is war. So, when Epilepsy tips it’s hand full of high cards and orders up trump, we don’t forget what we’ve seen because it would be too morbid to consider the very real possibility of losing a battle round. We acknowledge the reality of the way the enemy is positioned and the cards have been dealt. Then, we sit up straighter, strategize and prepare ourselves to take a hard-earned trick or two.
So, by the time that last travel-free Wish Trip day rolled around, yes, we were unapologetically prepared for seizure fallout. Knowing that her fatigue was deep and epilepsy would fight to win, we had Mercy’s rescue medications lined up on the counter and had already spent time in Bible study and prayer. Close friends were notified to pray. Breakfast was on the table, and Dan and I set our hearts on the day’s hoped-for fun activities, while at the same time our minds prepared for battle. A great outcome would be: Mercy would un-customarily be able to sleep in (something that hadn’t happened since her diagnosis), and petite mals would be far enough apart to be mere ripples in an otherwise restful day in the Village. A tolerable outcome would be: clustered petite mals that we could gain control over within a couple hours. A bad outcome: tonic clonics or status epilepticus.
Non-convulsive status epilepticus (NCSE) is one of the terrifying forms seizures can take, and within the term NCSE, there are additionally a variety of symptoms which may define any event. Reduced to it’s simplest form: a status epilepticus event is when seizure activity does not stop. The seizures just keep coming and coming and coming: a relentless hurricane of electrical misfiring. NCSE is like suddenly being thrown into the full throws of Alzheimer’s Disease within a span of minutes, not years. It’s waking up to an all-out assault from the enemy on your base camp.
Looking back on this particular day in her life, like all of the NCSE days she’d experienced before this one, Mercy has no memories that she can recall on her own which originate before 5:00 p.m. That’s because NCSE is a hostile thief hyjacking the brain and ripping memory from it’s victims. Not just memories of what happened that day, like a healthy person trying to access their patchy long-term memory recall. No, that would be far to kind. In the moments of it’s attacks, NCSE steals every memory, including access to neuronal paths which regulate daily habits.
That’s why, shortly after Mercy awoke, I found her rocking back and forth on her feet, fingering her brother’s clean diapers on the dresser top, a blank stare in her eyes, her eyebrows twitching non-stop. No matter how deeply I looked into their deep brown depths, there was nothing in her eyes. She didn’t know to trust me. She didn’t know herself. The essence of memories that had made her her yesterday, had evaporated like the flimsiest vaporous smoke today. All control over her own body was gone. She couldn’t “hear” us or respond appropriately. For the next eight hours, she would be bound in a dark night woven by epilepsy’s control over her brain, while we would try to bring her back to us with seizure rescue medications. For the next eight hours, we would rock on the floor with her and cry. For the next eight hours, her Daddy and I would carry her to and from the bathroom to couches and beds. We would brush her teeth for her, comb her hair for her, feed her when she could swallow and attend to her personal toileting needs the same way we did with our two year old son. We would try to keep our toddler boy as quiet and occupied as possible, because loud noise would make his sister cry out in pain and confusion as the seizures intensified, and because – even though it’s impossible – we try to shield him from this trauma for his own sake. Mercy would get a few seconds of break at a time, throughout the onslaught, and during those achingly brief moments of release from the dark storm inside her, she would scream out in high pitched wails: “Nooo!” “Stoooop it!”
Parents, there is no way to describe the terror of days like these. There is nothing, literally nothing, you can do to rescue your child from being assaulted by the enemy, beyond administration of the medications themselves and praying they eventually work. NCSE can quickly transition to CSE (convulsive status epilepticus), where your child goes into a tonic clonic seizure that never stops. This is why not only are you wrestling medications into a child who can no longer take them willingly of their own volition, not only are you physically taking on the roles of a CNA helping your dementia-like patient navigate their day, you are constantly triaging the situation with doctors to decide when it’s time to head to the hospital for IV lines and stronger doses of seizure-stopping medications.
Oh, and we packed too.
The day was long. Gut-wrenching. Painful. Terrifying. Exhausting. Relentless.
Every. NCSE Day. Is.
By lunch time, a miracle happened: we were able to get Mercy to settle for a nap. Mercy had only been able to nap one time since her diagnosis and subsequent taking of AED’s (Anti-Epileptic Drugs). A less frightening side effect of some AED’s, insomnia and restlessness are still very real annoyances, especially when fatigue is one of your seizure triggers. It’s a vicious cycle. A patient with epilepsy needs seizure control, thus the AED’s. But, they also need sleep…which the AED’s confound. Round and round we go. That is why Mercy finally drifting off into a shallow sleep was a very beautiful answer to prayer God provided that day.
When Mercy awoke from her nap, her seizure activity had slowed. She was now in a cluster of petite mals, so there were slightly longer breaks for her between seizures. She was getting one and then two minute reprieves from epilepsy’s grip, instead of the mere seconds she’d had during NCSE. The storm wasn’t over. But, the wind was dying down and the relentless onslaught of rapid-fire abnormal electrical shots fired inside her brain were being reduced to intermittent artillary barrages.
And, as Mercy began returning to us, so did her memories. NOT of the day she’d lived, but of the day she’d HOPED to live. There had been no Village playground or lounging at the pool. In fact, she’d now never see those places on her Wish Trip. There’d been no trolley rides, putt putt or laid-back time playing video games at Amberville. No shopping or treats.
She had no memories of the horror that had been.
Only of the pleasures that had not.
Like a battered soldier who thanks God that his life is still in tact, but then shakily stands to take in the carnage of the bloody battlefield, Mercy surveyed the damage and wept. That is the backhanded slap of epilepsy: the soft blessing of release and protective amnesia super glued to the stinging pain of what has been lost on the field.
Another day robbed by the dictates of her enemy. Not just any day: her once-in-a-lifetime Wish Trip day. Because epilepsy is cruel and indiscriminately heartless.
There is an old saying that expectation is at the root of all heartache. That may be. But all of us expect things without even realizing it. We expect to wake and still be able to shower. We expect to be able to pour ourselves cereal. We expect to be able to speak and pray. We expect these things because we’ve had them for a hundred days in our past, and therefore we assume they will be ours for a hundred tomorrows. We have expectation and assumption without even really investing any emotional thought or anticipation into these life ‘givens’.
Just live without expectation, and then you won’t have disappointment or sorrow, comes the advice. But that is shallow and fickle emotional protection. To live without both unconscious and conscious expectations is to live in a constant state of anxiety. While there is much spiritual benefit in taking brief moments to foster gratitude by acknowledging that all of life’s comforts are temporary, it is also true that if one spends too much time pondering that tomorrow’s givens may be unceremoniously stolen by a random accident that leaves one blind, or a sudden stroke, or a drunk driver, one will end up living in a valley of anxiety and fear.
No, we plan and move forward with our lives, setting goals and working towards them believing not just that it’s possible we may be able to function like we did yesterday, but that it’s likely. That’s automatic human functioning or as one theologian (John Piper) has described it: living within the “veil” of security that may or may not actually play out on any given day.
A Christian lives in the security of God’s sovereignty, knowing the unexpected will arise, but that God will work in and through it for the good. This is true. But there is a difference between the “knowing” of a healthy person – that something may rob in a theoretical or removed way – and the “knowing” that accompanies the certain robbing that occurs, regularly, with chronic illness. There is also a difference between resting in the knowledge that one’s spiritual future is secure and learning to rest inside of a daily life defined by chaos: where every automatic and innate human expectation is up for grabs by the randomness of a disorder that has yet to be tamed. In other words, there is a difference in how healthy versus unhealthy people learn to embrace spiritual rest.
Those battling daily illness can’t live with every hope invested inside of our expectations for our days, but just like we can’t choose to simply ignore the ways our enemy impacts our lives with random brutality, we also can’t afford to focus only on that fact. To live well, we must feed and foster our God-given dreams. Our hopes. Our expectations. That future peace treaty. These are spiritual hopes, dreams and expectations which may be altered or informed by our illness, but which exist nonetheless. If we don’t foster those…well, then the enemy has already won. He’s already taken all.
No, we hold on to spiritual hope during illness. We plan. We hope in future grace. We live the best life we can in the days we’re given. We honor God by chasing everything He’s granted us on loan and by embracing the moments, talents, gifts and service opportunities we are able to pursue on any given day, for His glory and our good. Just as we don’t ignore the enemy’s war tactics, we also don’t stop anticipating the comedy act coming to entertain our troop, the opportunity we have to assist another soldier, or the hope of future victory. We do BOTH: prepare for war and work towards peace.
And, on those days when all our expectations and dreams are attacked and stolen by the enemy and we awake battered and bruised, we allow ourselves the grace to mourn those losses, instead of berating ourselves for having had them in the first place. We run to our Abba Father and Brother Jesus who understand loss and heartache, and we cling to the firm knowledge that these losses are temporary disappointments in a sin-ridden world not worth comparing with a future that is Whole. Eternal. Beautiful. Pristine. Infinitely Secure.
Then, we stand up, comforted.
And we live…and dream again. Wiser, stronger, and more passionate about living the life we still have. Running, full bore, toward a life lived not controlled by fear, but by love.
And, that’s why Mercy’s “Wish Day That Epilepsy Stole” would end with “The Night That Christmas Came Early”.