Tag: #seizures

Before I could exhale…

His eyes were closed- ofcourse, what’d I expect, Joh was born blind, though Doc Parin (name changed) was looking at him, as if with a search light right to the brain. Then he scrutinised us carefully in that quiet room with nice vase and air conditioning. Warm August, palm tree in his window, fine scent of pine floor wash.

Our son Johann was at his worst: post seizure drug side-effects weren’t pretty. I’ve written about this, but not in detail. Details that will forever remind me of that Other Presence in the room besides the girls, my husband, son Joh, doc and me.

So, Johann. You’re a …musician I see. Play the violin?” His voice was flat smooth butter on crisp toast.

Neuro had referred us here to Psychiatry, really?!

What a rollercoaster of a year it’d been: series of Docs at Neuro centre, trial medications;

over this past year our gentle sweet tempered 18 year old had turned into a harsh, aggressive stranger. There were scratches and bites, rage and chaos.

What’s your favourite musical piece then?” Doc was friendly, but I cringed. What was expected here...Bach?

We’d been out since 6 am to beat rush hour traffic to St.J’s. Joh hated hospitals, we told him we were going to a new Restaurant. (The Cafe there did have some nice rolls though๐Ÿ˜ƒ). Now knowing we were here had infuriated him further, not to mention all that medication he was on.

Joh sank his forehead on the table.

I felt a dark thick wave hover over my temples, as weariness began to overwhelm me-

weary sick of medications that hurt our kid, of people who tried to assess our personalities as a family, of being judged and stared at. Joh was our golden boy, the girls couldn’t function without him. He had a way with words and humor; knew how to keep guests entertained, sang like an angel, played at least 3 instruments. After the seizures suddenly began last year, his voice had begun to give, along with tremors and sweats. Repetitive words, noises, sudden fury, dearest Lord… help?

Doc P. was gazing at some spot over our heads, his face a melting pot of pity and professional sorrow;

that big black wave of depression over head now began to crackle crash, I felt the earth below me shift and heave. Joh had been featured in gigs- with a band, solo, he was a force to reckon with. Was pitch perfect, could call out names of chords, tuned instruments, jammed with some of the city’s best… now a mass of nerves, he yawned hard and flung at a stack of files. Doc sighed….

my husband Jeff put an arm around Joh, the girls made the soft sounds they make when they are cheerleading him. I tried to think of something but all I could do was cry tearless inside, diving into a depth away from the black negativity, I couldn’t breathe ….

Joh straightens and says in clear tones, “Reckless Love. That’s my favourite one.”

What violin piece is that? Never heard of it.”

It’s my favourite…”

You play it on the violin…?!”

Yes, Doctor.”

Before I could exhale, the Lyrics lifted me over and above the thing trying to destroy peace…

“Before I spoke a word, You were singing over me
You have been so, so good to me
Before I took a breath, You breathed Your life in me
You have been so, so kind to me, Oh, the 1, never-ending, reckless love of God
Oh, it chases me down, fights ’til I’m found, leaves the ninety-nine
I couldn’t earn it, and I don’t deserve it, still, You give Yourself away
Oh, the overwhelming, never-ending, reckless love of God, yeah
…” (Kory Asbury)

….

I could write on and on.

Joh is 90% better. Doc’s been steadily knocking off 3… no 4 drugs that weren’t supposed to be given to him, while now introducing a new one. Theres deadly withdrawal too we deal with. It’s a tough 24 hrs/ day, often every minute we take a new risk. Triggers must be watched. Tempers, language flies, we all host series of bruises in various tones of healing.

Tonight at prayers, Joh sang Reckless Love again, and before I say another word, I must say how this has changed me, to know He breathes over us, over and over, realtime recklessly, in love pursuing us, till we overwhelm the thing that tries overwhelm us.

Life’s getting steadily more beautiful. We thoroughly relish silent pauses, hands are held, faces hugged. Sweet Jesu what a wonder You are, how precious this life is, in its healing stages too. What heights and depths here we’d never have sampled if not for these days. Before we forget, I need to put it all down: the fabulous reckless love of God that holds us all close, no matter how unchartered the course. More than physical, it’s the spirit of man that yearns the presence of God.

I’ve exceeded my 5 mins Kate Motaung of FMF writers, but am grateful to you all for Prompts that wring out these precious details, for the widening circle of friends who make life a blessed experience to share. God bless you all, and precious ones who take the time here to read/ comment. Stay blest.

RN.

Hands on, rage.

Janbi Street half hours drive from here, there they were, two bikers – one with bloodied nose, then bloodied mouth, as the other rammed his fist in him, over and over. A crowd gathered, they try separate the two. The wounded guy just sits there taking it, as the other rears to go again, his fist readying….

Jeff and I are silenced, words choke. What’s to say. We just saw rage, violence. What had caused it? An accident prior?

My son’s palm in mine, 31st December prayer meet

Road rage, all kinds of rage, is getting more in the news, it competes with rape and glitzy page 3 spreads. I’m shivering as we reach home. Those guys were in their 20s,30s? What makes things go so out of control we can ram our fists into each other over and over till flesh breaks and blood pours down? Why is it easier to be explosive than be anything else? It gets easier to rave than try peace. Tempers are not leash-able, not much.

What happened to us all, that we cannot control emotions; we believe in mortal wounding, anything but a gentler option.

And ofcourse we cannot/ will not pray; it’s a foolish silly old- fashioned, ignorant thing to do, right.

Here’s the thing: something does happen when we hold our hands and join forces with that Unseen power from where Grace flows. I’m talking 100% nonsense, right? Try me.

I’m veering off a bit here, but these past few months at home we’ve had to deal with violence as a family, following post- seizure drug-induced aggression from our youngest who for 18 years has been the gentlest person we’ve ever met. I won’t do details here, but it’s been bad. There’s been days in November we just hugged together and wept. He’s unfortunately been on 3 drugs – previous Neuro Doc should not have given him. New doc now retracts those and we introduce new med. We have withdrawal which is a Syndrome in itself. Rage? You think I don’t know it first hand- my own frustration at a system that is this careless with a serious medical condition.

Psychiatry would call the Act of Prayer ‘Self Counsel’. If I were left to self-counsel I’d have turned into a monster, trust me. What happens when we pray, is beyond me, but this happened here, among a whole stack of other changes – both interpersonal/ personal. Anyone want details, please say. Happy to help. idialects@gmail.com

1. A peace that human understanding alone cannot understand, that’s happening.

2. Clear instructions to not use harsh tones in our own voices, even a loud yell of joy, these could trigger a reaction, among other triggers.

3. Harvesting joy in our own selves, this somehow broke through to our troubled son, don’t ask me how. Joy spreads. He knows the air has changed for the better. I said ‘harvesting’ … because it takes work to do that sometimes, hard work. Forget self, count blessings… ๐Ÿ™„ yet, it works. Joy is a Force to reckon with.

4. Remembering all the 18 years of this young person’s gentle nature, and seeing him through that filter, knowing this is drug reaction. If not, God help us, but there’s that deep well of Quiet, I don’t know how else to describe it.

5. Gratitude, songs of love, thanking God for everything, even for this trying time, it takes the sting off the moment. Horror loses its claw hold on me, it has no control over any area in my life, if, in everything I can say,”I thank you Lord.”

One morning I prayed in the stars; the rest of the family were still in bed. It was softening grey misty, like my heart softening, waiting in silence. And I’d be a liar if I didn’t tell you He sent Comfort and Joy and Strength. (Wouldn’t be blogging without it, ๐Ÿ˜Š).

“I love it when You speak to me

@innerdialects.

My Journal.