It's been a busy time, not just because of the things that have happened (the life stresses for us and our loved ones), but also because of all the tasks that still beckon and await, tasks that still need time, attention, effort, and resolution.
But there's only so long that a family can go on so intensely. There comes a time when you simply need--not want, but need--a break. And so, when we'd finally taken care of the absolutely critical things, we decided to clear the decks and take a day for rest, relaxation, and rejuvenation.
And so there we were, that Saturday morning four weeks ago, ready for our day of rest.
The wonder of being able to take a day off and not worry about what should be getting done was both exhilarating and luxurious. Delicious even. And we were thrilled and excited.
After sleeping in and pulling off an appropriately slow and slovenly start to the day, we'd decided we didn't want to cook. And so David had just driven off to go pick up lunch. Meanwhile, on the back deck, Awesome and I earnestly began the task of relaxing.
Things had started well enough.
Awesome had been sitting there on the cushioned reclining deck chair, reading a book, as happy as can be--until suddenly she wasn't. And as soon as she wasn't, she was jumping up and with urgency in her voice. shouting, "Oh, no!"
The transition from relaxation mode with me sitting at the nearby table with my feet up, reading a book, and enjoying the prospect of a day of relaxation--to emergency management mode- was immediate. Sadly, epilepsy's given us plenty of practice in making these sudden shifts.
When a seizure strikes, our first priority is always to get Awesome into a safe situation--a safe place and a safe position. Strategically surveying the scene, it was clear that that safe place was not where Awesome was right now. The cushioned deck chair on which she'd been sitting was too narrow--so narrow that she'd likely fall off it if she stayed there for the seizure; likewise, were she to fall, the concrete floor of the elevated, covered deck looked menacingly dangerous. Dropping my book as I jumped up, I ran to Awesome and slipped one of my arms firmly around her waist--so that I could support her and keep her from falling if her knees suddenly buckled--and swiftly--while she could still stand and walk--ushered her into the house through the open sliding glass door. Once inside, I quickly guided her to a low, wide futon couch, helping her first to sit and then to lie down on her right side.
Surprised but pleased that she was still conscious, I dug into the outer pocket of the emergency rescue bag I was wearing, found a small glass roller bottle of Frankincense oil, uncapped it, and handed it to her to smell. My hope was that smelling it might delay the impending seizure. Meanwhile, from the same bag, I also took an oral syringe of 10:1 CBD. If I could administer it quickly enough, the CBD might abort Awesome's aura--her simple partial seizure--now, before it generalized into a convulsive seizure.
But it was already too late. As I prepared to dispense the CBD into the mucus membranes of her mouth where it would be quickly absorbed, Awesome lost the battle against the generalization of her seizure. Her head began to turn firmly to the right, her right arm began to stiffen and straighten, and then very quickly, the full force of the tonic-clonic (convulsive) seizure hit.
For the next minute and a half while I sat helplessly at her side, the monster that is epilepsy had my child--our sweet, wonderful Awesome--firmly within its terrible grasp.
It's an awful thing to watch your child seize, even when you've learned through repeated experience to stay calm.
Thankfully, this seizure (we have CBD to thank for this) was of short duration and moderate severity. The convulsive part ended within a minute; another minute after that, Awesome's eyes closed, signaling the end of the seizure. She now fell into a deep and peaceful sleep.
While I'm capable of handling seizures and their aftermath--the post-ictal period--alone, I prefer not to. It's always helpful and comforting to have both moral support and also a second head and a second set of hands. And so, as I sat beside Awesome, I called David to let him know what had just happened. Only a couple of miles away, he decided to turn around and come back home again. Lunch could wait. Awesome would be in no condition to even think about food for the better part of an hour. And David and I no longer felt hungry.
As I sat beside Awesome before David got home, listening to her heavy breathing, looking at her now peaceful face, I thought about how ironic it was that, on this our day of rest and relaxation, that epilepsy had done it again. It had scuttled our plans. Hijacked our day, and made clear again that it had the power to continue to hijack Awesome's and our lives. It had stalked us and attacked Awesome again when we'd least expected it. And we'd been left lying here wounded and waiting...and wondering at epilepsy's unbridled power to do so. And so, there we were on that intended day of rest--Awesome out cold because of a seizure and me in some medium range version of fight or flight mode, adrenaline coursing through my veins, making the world at once more real and less comforting and less understandable. And there we were too, feeling exactly the opposite of relaxed and restful.
And so too, there I was thinking about seizures, and epilepsy and the nature of a life spent with them. But the truth was this: I hadn't wanted to spend any time that day thinking about seizures or epilepsy. Today was supposed to have been a day of catching our breath. Kind of like coming up for air and a rest before taking another deep breath and diving down below the surface again.
But how could I avoid thinking about seizures and epilepsy as I sat there next to my child sleeping off the exhaustion of brain and body that is the aftermath of a convulsive seizure?
And the pressure to think about it all was greater than usual this morning, because, with this seizure, Awesome had reached a significant negative milestone: her 100th convulsive seizure.
And with her 100th convulsive seizure, like it or not, we stood perched in a pivotal moment between past and future. A milestone like this was ipso facto an imperative to take stock. To think back on those first 100 seizures--both individually and as a collective experiential whole, a "corpus," a "body" and to remember, compare, contrast, contemplate, conclude, feel... We had amassed a whole body of experience. Narrow misses. Lessons learned. Dangers flushed out and understood. We've endured these 100 seizures. But those 100 seizures have also profoundly shaped us: shaped the way we think, the way we do things. How we understand epilepsy. How we understand our responsibilities as parents. How we protect our daughter. And how we then live. Those 100 seizures as a whole and the various individual seizures are always in the back of our minds. Mostly as wary lessons in prudence, instructing us always, to think ahead. To be prepared. To have a plan. To diligently monitor to keep Awesome safe. And as I sat there, memories of various individual seizures tumbled through my head. Also, thoughts of how epilepsy has changed us. Molded us. Trained us. And left us always on the defensive, because epilepsy seems always on the offensive. Always stalking. Always surprising.
So too, the 100th seizure was a imperative to look ahead. To wonder. To worry. To think about whether Awesome could and would ever be extricated from the deep quicksand that is intractable epilepsy. A pre-surgery work-up is on the horizon; in fact, it had just been moved to the foreground of the horizon by her epileptologist a couple of days earlier at our latest appointment with him. The prospect of epilepsy surgery is both enticingly hopeful and also at once extremely terrifying. The truth is that in the couple of days between that appointment and that Saturday morning, we had kind of shoved the prospect of surgery into the recesses of our minds to let it sit there for awhile and become less emotionally overwhelming before we processed all of the fear, hope, and other emotions that the prospect of surgery brings up. Processing it all and coming to terms with it all, IS on our agendas. I promise that it is. But that Saturday morning as I sat watching Awesome in her post-ictal sleep, I just couldn't go there in my mind. I just couldn't think about or process the what-if's of epilepsy surgery. Not this morning. Not when we were trying to find our way out of living on overload. Not on a day of rest and relaxation. I really didn't want to revisit the past or look ahead to the future. This morning, I simply wanted to live in the present. This day. And delay thinking about both the past and the future.
David came in the front door at some point. After exchanging a few necessary words and a hug, we sat there together in exhausted silence. After Awesome has a major seizure, it usually takes us time to calm down, readjust, and regroup. We often find ourselves in a quiet state of reflective mourning, struggling with deep feelings of sadness. And though perhaps it's just a side effect of the adrenaline in our systems--and it might sound odd to say it--after a seizure reality always seems especially real. It's right after a seizure that we most intensely feel, in a bone-deep way, the seriousness and intractability of intractable epilepsy. The terrifying power of intractable seizures--seizures that we--and so far, medical science too--are powerless to stop. And so too, we seem especially acutely aware of the danger and vulnerability of living always, no matter what we do, so close to the edge. We can't help but do the math. It's the reality of our lives that we live only one ill-timed lapse in monitoring away from disaster--from something that would leave Awesome alone and vulnerable, facing the dangers of a seizure alone. And so too, we can't help but realize that we're only one very ill-timed or unusual or unmonitored seizure away from a serious injury, an ICU stay, or worse. In this regard, there's always the feeling, after a seizure, of having dodged a bullet. Of having been lucky. Of realizing that things could have gone the other way, and that one day they inevitably will go the wrong way--and that on that day we won't be so lucky. Consequently, the reality of epilepsy is really in our faces in a uniquely intense way after a seizure. And even if we avoid actually thinking these thoughts during the post-ictal period while we're siting with our unconscious child, we feel them, We feel the danger. It's an inevitable Post Traumatic Stress reaction thing that we experience. And it takes awhile to quell it. To let those fears and feelings work themselves through. In some ways, feeling these things in the post-ictal period--involuntarily--is nearly as traumatic as the seizure itself.
As we sat there beside Awesome that morning, waiting for her to start to stir again, first mumbling incoherently and drifting in and out of consciousness, and then finally finding her foothold again in the conscious, waking, coherent world, we experienced all these thoughts and feelings.
And we really didn't know what to think. What it made sense to think.
And so there we were. Our day of rest and relaxation, though it was still a day of rest and relaxation, didn't feel the same anymore. It was no longer hopeful, happy, sunshiny, and all full of possibility; it now felt sadder, darker, less hopeful. It was like a dark cloud had come and blotted out the sunshine, the happiness, and the light and had dampened the hopeful, happy energy. The headspace where each of us was left--David, Awesome, and I--was different from the place where we'd begun the day, just a couple of hours earlier. We were in a weary, worried, defeated, and tired space, longing once again for rest and relaxation.
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