The waves toss us in our little boat until we are seasick and disoriented. Ours is a tiny little vessel on the great swells of the deep ocean that is epilepsy.
So often it feels like we're lost. Alone in the tempest. Small, exposed, and vulnerable. Riding the heights of the swells one minute; and the very next minute, resting in a deep trough surrounded on all sides by the constantly changing, uneven surface of the towering, shifting waves around and above us. Just when we feel it's inevitable that we'll be completely overwhelmed--inundated, not just by waves crashing over our boat, not just by sinking slowly beneath the waves, but by being pushed under water with force violent enough to obliterate--suddenly we find ourselves being moved sideways, upward, and forward. The waves reverse; some of the towering swells become troughs and abruptly the motion slows. Suddenly we are again changing direction; being sucked backwards before moving forward and upward again. And then in an instant we are again at the top of a swell from which we can see the shifting landscape of the water all around us.
In the confusing landscape, change and unpredictability seem the only constant. The sky above us, thick with cloud cover, offers no stars--no consistent reference points--to guide us. Tossed to and fro in the frightening vastness of the great churning ocean, our tiny boat is unanchored. Steering produces no effective results. No control. There is no way to orient and stay oriented in a changing landscape. Everything is relative. Constantly shifting. Confusing. And frightening.
Some time ago we began to realize that there will be no rescue. No helicopter that swoops in from above, drops a rope, pulleys us up, and whisks us off to safety, wrapped in warm woolen blankets and competent concern. The intractable epilepsy diagnosis, especially the way it seems to be shaping up in our particular situation, means that the likelihood of managing to find our way to another kind of existence, to a shore where we can dock, disembark, and delight in life on land, is pretty slim. We've been told that we can expect to face the vagaries of the ocean's waves for the long term. That we need to bide our time and wait--on medicine and genetic science to advance, for technologies of various kinds to be developed and/or perfected, for better access to medical cannabis, for Awesome to mature, for pre-surgery and surgery or VNS, for this, for that, for whatever.... In short, for the future. The future that is not now. Hope for a change in our lives and our landscape is far away. In that far away future. And so we'll be riding the swells and troughs for the foreseeable future.
That's both a sad and a frightening thought.
But I'll be the first to admit that everything in life is relative. More terrifying than the thought of bobbing and swaying on the water's surface long term without rescue, is the thought of becoming acquainted with the murky deep below us and coming to rest on its bottom. Relative to the threat of the murky deep, being indefinitely adrift at sea sounds seriously attractive.
Thoughts of "it could always be worse" keep us thankful. We have a boat. It does float. Awesome has a level of seizure activity that is disruptive and difficult but livable. Awesome is otherwise neurotypical, cognitively, socially, behaviorally. She and we have good health. We have each other. We have love. And we have life. We have those who stand at the ready to pull Awesome back out of the murky deep and set us back in our boat again. And we have good thoughtful, cautious, intelligent doctors.
Still, it's a wild, worrisome ride, this bobbing about the ocean in our little boat, a boat that so often seems unseaworthy. Our ride is punctuated with adrenaline rushes. And too often with narrowly escaped disasters. We have no idea where we're going, if we are, indeed, "going" anywhere. Maybe we'll simply bob and sway forever. Never "going" anywhere. Just living out our lives in the peaks and the troughs. In the meantime, we rock and sway; we brace ourselves for the towering waves that break on the deck. We struggle to orient ourselves. To carry on. And we worry about today and about the future.
Epilepsy is not conducive to equilibrium. And Intractable Epilepsy seems antithetical to it. The Holy Grail of Epilepsy--seizure control--is something we're very unlikely to find drifting about the ocean.
Right now my mind is a churning jumble of recent experiences and disparate bits of information.
Late April and all of May has indeed been the stormy deep for us. The churn of experiences, tests, and appointments. And the corresponding churning inside our heads, with our emotions--and in our lives--as we try to put it all together and figure out what it all means. The fear that, in the end, it all means nothing. That we are simply adrift alone on a vast stormy ocean.
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