Long before Mathilda was diagnosed with Narcolepsy, we spent many a night comforting her under the illusion that she was experiencing a bad case of night terrors. Her older sister Liberty had had them at the same age a few years back. Mathilda was also an imganiative child--her three inch friend Ayah lived on her shoulder and went everywhere with her. The two them conversed together conveniently in the back of the car, at the dinner table and even in bed in the evenings. So once Mathilda began reading and writing it didn't seem to strange that her imaginative life would extend into the nights.
But there was a difference. Whereas we could draw Liberty out of her night terrors and back into the real world after considerable reassuring, Mathilda's "bad dreams" seemed to pull her into an unreachable place--one that held her captive and was inherently dark. I remember saying to her Neurologist not long after she had been diagnosed with Narcolepsy, that it wouldn't be so hard if she was having the kind of elaborate fantasies that left her happy--riding unicorns or swimming with dolphins. Not once did she report a dream where she rode horseback along a beach or spent an afternoon with fairies.
The horrible thing about Hypnogogic Hallucinations is that they are terribly dark and terribly real. It was the real-ness that left Mathilda petrified and us at a loss as to how to help her. And it was the real-ness of the hallucinations that concerned me for another reason--they seemed to leave a psychological mark on her. Was this the main reason for her daytime withdrawal, depression and melancholy? Did it explain why we felt at times as though we were losing her? How could we as parents reach her three year old mind that traveled to another place each night? Where did she go? Knowing that with a diagnosis of Narcolepsy and a full-house of symptoms (clinical tetrad) as her doctor put it, and knowing that unlike night terrors she would not outgrow them, I wondered how we could safeguard her when she faced every night for the rest of her life hallucinating.
I say this as a carer, because of course I have never had a hallucination, hypnogogic or otherwise. I have never known what it is to be dragged into a dark place and tormented for hours at a time. But I was in the room with her, holding her, putting on the light, talking about other things, signing and praying her out of it.
Herein lies the difference between childhood night terrors and Hypnogogic Hallucinations, one of the hallmarks of Narcolepsy. Hypnogogic Hallucinations occur during the transition from waking to REM sleep. Similarly, HypnopompicHallucinations (sensory, auditory and tactctile, vivid, often three-dimensional experiences) occur during the transition from REM sleep to waking. So somewhere between waking and (REM) sleeping, and sleeping (REM) and waking, a person with Narcolepsy (PWN) slips into another world.
Mathilda's beach hallucination is a good example. We had spent a pleasant afternoon at the coast with friends, a few hours that were I thought unremarkable. We got stuck in traffic, ate our sandwiches along with grains of sand, played in the waves and brought ice creams on the way to the car. it rained a little, we changed into our bathing suits under towels and arrived home late. Mathilda slept all the way there, on and off on the beach and all the way home. There's a photo of the two of us that day, I am wearing a blue sundress holding her up as she fights cataplexy over her delight in looking for seashells.
That same night she re-lived it. Only it was a distorted, bizarre, tangential version of events--a Hypnogogic Hallucination seemingly related to her experience at the beach ...
Mathilda was standing alone on the shore. Her friends were treading water in a circle, some way out to sea. Then, one by one, the girls started to drown. They began holding hands as if to help one another stay afloat before surrendering to the tidal undercurrents and screaming. Mathilda couldn't swim but could reach them another way. She shot her eyeballs out on springs. By some strange magic she commanded her eyeballs to fire our of her sockets and catapult onto each child, sticking to each of their chests with glue before dragging them back through the water and onto the shore.
Eventually she came to in her room, crying and feeling for her eyes, telling me that she had saved Emily, Hannah, Francesca and Heather--but that she was now blind.
Hallucinating like this night after night made me aware of the fact that we were not dealing with something straightforward. It's a term I have referred back to as "parenting outside normal parameters." Rarely have we have felt we couldn't cope with the various symptoms of narcoelpsy, but Hypnogogic Hallucinations have brought us very lose to the edge of that. Some nights she has physically responded to what she has seen. felt and heard, and injured herself--smacking her head on the wall or falling out of bed.
I reported all this to her doctor at the time and was advised to cut back on TV, put away anything that might contribute to her active imagination. Except we hadn't owned one for fifteen years. And as far as I could tell, any normal day time activity could be contorted into a narcoleptic nightmare.
So how can we help our children beyond lying beside them and willing them out of the hypnotic state they are in?
We have found that dealing directly with hallucinations is largely controlled with Xyrem, a powerful drug that depresses the central nervous system. Other than that we put on the light, drink and eat a little, and reassure her of where she is. Never do we dismiss her experiences as false. To her they are real, any PWN will tell you that. We remind her that whilst Narcolepsy is part of her, it's not all of her and if there's someone on social media, who is also living with it and has managed something difficult, like graduating or running a marathon, she looks at the pictures and we talk about how despite her condition she can be anything she wants to be, do anything she wants to do.
A few years back, just before we picked up the phone to a child psychologist, we stumbled across perhaps one of the most helpful tools she still uses, one that helps her process and make sense of the Hypnogogic Hallucinations. Mathilda began drawing furiously. Pages and pages of bright colors and strange images. Often they became three dimensional. More paper added, more color, more sellotape. Then as she learnt to form letters, she began to write. Besides her bed we have supplied her with a never ending roll of paper, and a pot of markers and by the morning it is covered in colorful pictures, or random words, sometimes whole stories. Some days the paper is blank and I am grateful for those nights.
Other times she wants to talk about where she has been and what she has seen. Then there are days when she doesn't. And that's okay.
I'm not sure if we ever really reach her when she is drawn into the darkness of Narcoleptic Sleep, but I hope as carers we are doing enough to see her through a childhood that isolates her every night and towards an adulthood that is optimistic. One that perhaps is augmented as a result of growing up with these challenges, where experiencing Hypnogogic Hallucinations is not a hindrance to what we as parents desire for our children with Narcolepsy: to lead a near normal life.
One that is rich with insight, compassion, and a perspective that understands there is more to life than what the rest of us see.