Things neurological run together and when Sophie flings herself forward and sideways, always to the right and sometimes to the left, banging her head sometimes and jerking it's not a seizure but a seeking of sensation and some people think that I'm strong that I'm amazing, actually, when, actually, I'm not not at all but rather frustrated as any mother might be whose toddler, perhaps, has thrown one too many tantrums that day so she raises her voice sharply knowing that that's no good and yells stop it knowing that the child, in my case, the teenager, my Sophie is innocent and not so innocent because she stops responds to the voice the tone and looks straight at my eyes in the rear view mirror so I know she knows but her humming, too, the loud humming which might be an attempt to communicate or might be the brain rebelling against the wean of Keppra or perhaps the adding of the Vimpat (the drugs, the drugs!) so even if the seizures are dimmed and slowed and disappearing there is something residual enough to make what I imagine is a tingling hum in her head but the hum in my ears and then my head drives me crazy enough to crank up the music to drown her out and myself my eyes are dry but my heart is jumping and in this case it's only Van Morrison wailing Sweet Thing that calms me down. And I will stroll the merry way And jump the hedges first And I will drink the clear Clean water for to quench my thirst And I shall watch the ferry-boats And they'll get high On a bluer ocean Against tomorrow's sky And I will never grow so old again And I will walk and talk In gardens all wet with rain Oh sweet thing, sweet thing My, my, my, my sweet thing. An old man jogs by with knee-socks and the song changes to I may go crazy before I see that mansion on the hill but for a moment, there, I was myself.
Maybe the music helps drown out her hum, too. My husband has constant ringing in his ears and he drowns it out sometimes with music. Maybe music helps the humming in Sophie's brain, too... maybe in her own way she was asking you, willing you, to turn it on. And all of this probably reveals my incredible naivete about neurological conditions...ReplyDelete
In the midst of those streaming words I read that the Vimpat might be helping, a bit? Hope so...
Owen and I listened to that song and he danced a bit and I thought how lovely that I could hear what you have been hearing.ReplyDelete
With Katie it's a noise that I can't translate into letters but you would recognize it. It's the sound small, pre-verbal children make when they want something. It is continuous and wears me down. That and the touching, the constant touching.ReplyDelete
I've come to accept that this will go on until one of us dies, but I try not to think about it.
Sending a hug.
I'm still listening to Van Morrison, (over thirty years now). He has a way of making sense out of a hum, giving context to something that seems to escape our understanding.ReplyDelete
What a great awareness -- "for a moment there, I was myself." I think like that sometimes, too, and although I miss that old self, I try to take the best parts of her with me to my new self, you know? I think that's what you just did!ReplyDelete
Has it occurred to you that maybe Sophie is listening too? That the humming may be her way to ask you to play some music louder to drown the humming in her head? There is a sense of familiarity in repetition that may be comforting to her. Maybe the humming inside her head preludes the end of a seizure and since hers are hopefully diminishing, she may want the feeling and the terror to end faster. I know, I know.ReplyDelete
But there is still a part of me that refuses to give up, as if miracles are bound to happen even if it is unlikely that a closet may be the vehicle for one.
I would like to think the Vimpat is working.ReplyDelete
and Van Morrison is a comfort always.
It sounds so hard, Elizabeth, so relentless this thing that has taken over your beloved daughter. My thoughts are with you, and I'm glad for you for the comfort of music and Van Morrison and art and writing and your sons, for without these, things would be even harder.ReplyDelete
breathing deep for you, my friendReplyDelete
Van makes everything better even if just for a moment. My best friend from childhood hums constantly. After 20 some years of it I asked, "Do you realize you hum ALL OF THE TIME?" She didn't. In 20 more years I'm going to knock her up side of her head.ReplyDelete
Oh my goodness, Van Morrison is my go-to turn up loud music. Especially when my 15 year old is doing things and generating energy that I need to separate myself from.ReplyDelete
Do you have a copy of Astral Weeks live? I think I may have to send it to you.
I hope the medicine is making a difference.
I'm so there with you. beautifully written. raw and real.ReplyDelete
Your writing is beautiful, heartbreaking, exceptional, and deeply moving and involving. I hope it also calms you down. I can only read, and send love.ReplyDelete
PS A week ago I had Van cranked up on Pandora and The Boy comes out and says...what is wrong with him!? He can't sing at all! WHAT?! (I asked shocked ) Listen to his voice it's terrible!ReplyDelete