Living Without Laughter--The Cataplectic Quandary
We never made the connection way back, when Mathilda lost control of her legs as a result of feeling happy. All we knew was that she was slurring her words, thrusting her tongue into her bottom lip and collapsing down onto the floor with what she called "The Floppies." Momentarily she would be paralyzed but at the same time fully aware of her surroundings--yet unable to speak. It was one of the weirdest things I'd ever seen and because she was only three, it was impossible for her to articulate what was really going on. We were all well and truly in the dark. If anything, I thought she looked drunk, staggering off towards the trampoline or walking towards me with a toy in her hand. But after The Floppies had struck on the stairs, rendering a fall from the top and a minor head injury, we realized there was never a moment where she could be safely left alone, knowing that a full collapse might strike at anytime.
Cataplexy (we registered long before the diagnosis) was dangerous.
Once we had a name for it, we began to understand what triggered these peculiar moments of frightening paralysis. Cataplexy is defined as a transient loss of muscle tone induced by strong emotions, (such as surprise, joy, fear, anger, and shame.) Originating from the Greek word kata - down + plēssein to strike, it is a cardinal feature of Narcolepsy, occurring in approximately 70% of cases. Specifically, Cataplexy doesn't exist in isolation without Narcolepsy, and is so bizarre that it leaves many physicians baffled. But ironically it was the dozen or so videos of Mathilda's Cataplectic episodes that eventually secured her diagnosis in 2010. Without those, they would have gone ahead and checked us both into the psychiatric unit. No joke!
At the time her cataplexy ranged from a barely perceptible head bobbing, to tongue thrusting to knee buckling which, when she was really happy, meant she fell right down. One minute she was saying something, the next she was paralyzed under my feet. We had some understanding that she could still hear us, so although she couldn't move for a up to a minute, we talked her through it until she was able to respond and move her limbs.
Apart form the stairs incident she had also collapsed next to the dishwasher, narrowly missing knives. And then at the beach, when she became immobile in the waves, reliant on us lifting her out because Cataplexy also paralyzes her voice--when she needed to, she couldn't shout for help. Countless episodes of her falling in response to happiness, left my nerves frayed and us both both trying to grasp the reality of this weird characteristic. There's really nothing I can think of that is comparable.
We came to see that Mathilda's main trigger was joy. (Surprise comes in as a close second.) Realizing this, left us wondering after a breakfast episode when Elliot cracked a joke and Mathilda's head landed in her cereal bowl, should we avoid situations that were funny? Situations that were happy?
How could we really do that?
How could any of us avoid joy or live without laughter?
What would life look like without spontaneity?
And this is a quandary for both adults and children with Narcolepsy. Do you opt for living a "near normal life" and shut down tangible avenues of happiness? Or roll with it at the expense of personal safety and social embarrassment?
I can't remember exactly when it was, but at some point the Professor and I decided that we could only ever really be ourselves, despite Mathilda's diagnosis.
And I mean all of us. We couldn't very well tell Liberty and Elliot not to laugh, never to crack a joke. If it meant supporting Mathilda's head, or catching her as she fell, we made a conscious decision to keep up what was and is a crucial part of family life--namely light moments, in the midst of dark ones.
This video shows Mathilda (4) being tickled by Liberty (10). Desperate to stay connected to her, we intentionally made Mimi laugh but at the same time made sure she was safe. It is one of the happier videos that show her Cataplexy, but also one that helped secure a diagnosis of Narcolepsy.
And a few years in, with medication (Xyrem and Strattera) taking care of the majority of cataplectic episodes until about 4pm, we have hung on to humor--the very thing which by the same token, keeps us all sane. Because a life without laughter, a natural sense of joy, is a denial of what it means to be complete.
So with effective treatment and a determination to cling to the essence of what it means to be a family, we have chosen joy. It sails very close to sorrow at times but in those quiet moments we seize the very simple pleasures of family life.
“Some of you say, “Joy is greater than sorrow,” and others say, “Nay, sorrow is the greater.”But I say unto you, they are inseparable.Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.”
― Kahlil Gibran, The Prophet
With Grateful thanks to the team at Stanford Center for Narcolepsy Research who began treating Mathilda almost 5 years ago, allowing her and all of us to realize a life full of joy.