#huntingtons
The progression of Huntington's disease often leads to the need of a wheelchair. My husband resisted using a wheelchair for many years, even though his poor balance and tiredness meant he was prone to falls. I didn't exactly pressurise him into using one. To be honest it was not just because it was another sign of loss of independence, but it would have been harder for me too in many respects.
What I wasn't prepared for, when the time came, was the social stigma attached to wheelchair users insofar as becoming a kind of non-entity! In a weekly blog I wrote in 2008 I wrote about the first time I took my husband out in a wheelchair. It angered me how peoples’ attitudes seemed to change overnight.
Walking down the High Street,
Hand in hand like lovers,
The couple blend into the crowd,
No different from the others.
As the years go by though,
His body having changed,
Has sadly meant a wheelchair,
Has had to be arranged.
Strolling down same High Street,
The woman now behind,
Her lover needing pushing,
Steep pavements so unkind.
Entering the bar now,
With awkward navigation;
People jump to open door,
Aware of situation.
“Thank you” says the man in chair,
When wheeled into the place;
“Welcome” say the helpers there,
But all avoid his face.
Carer gets the “Welcome” mouthed,
No looks with him they share;
Let’s treat this fellow human being,
As if he wasn't there.
Jul 21, 2015
Jul 21, 2015 at 7:39 AM UTC
As school comes to an end, I decide to
spend the summertime with my instrument.
I read music theory for two hours,
but my hands yearn for the touch of six strings.
Fingers position themselves to stroke bliss.
But my phone’s troubled with recurring rings.
**** it was mom telling me I have class!
I raced for my backpack, and I told her:
I will not slack. Papers grew so lonely
without their folder to cuddle them close.
I couldn’t care to organize them cause
usually, I’d lay in my seat repose.
Ionic bonds? What do they even mean?
And what the heck is “double replacement”?
Okay, I should start paying attention.
I grasp the pen. I notice the tension.
As soon as I write, my hands start to shake.
I start over. Now hands begin to ache.
What in the world is happening to me?
Two words: I scream. Head jerks, and my legs shake.
It has to be a dream. It has to be!
Don’t want to move, but I have to take notes.
Why are random words bursting out my throat?
I’ma be real. I need my mommy!
Class is over. I exclaim to mother:
my fingers refuse to stop tremoring.
And I’m getting these tics. What set it off?
First thing I do is reach for my guitar.
I can’t hold it. I can’t ******* grab it.
Eyes of terror stay written on my face.
The next day I was in a wheelchair.
I cannot look straight- straight up to the sky
or look in front and into people’s eyes.
My right-hand curves to the left. A tendon
sinks into my flesh, and my left fingers
cramp up from being intertwined like vines.
They are stiff. Hideous. These are not mine.
But it does get much better with some time.
I can walk again, talk again, and write.
But all good things come with downfalls, don’t they?
My brain disease will come at me with might.
And I refuse to give up on this fight.
There will be a time when I reach stage five.
And I know it won’t be a pretty sight.
I’m ready for what will happen to me.
Dearest guitar, please know you’re my heaven.
Why bother to fret? Cause’ when the time comes
I’ll see you again in a few seconds.
Jan 8, 2022
Jan 8, 2022 at 4:46 PM UTC
For her eighteenth birthday,
a gift from the fates;
she knows how she will die.
Before, there was a vague notion—
A shadow cast by a hungry dragon
who roosts on the branches of the family tree,
devouring her ancestors, waiting and unslayable.
Now, the diviners speak to her in pedigrees
and punnett squares, leafing through a deck
of tarot cards, checking vials of her blood
for patterns in the tea leaves at the bottom,
hardening the shadows at their edges and
twisting peripheral horror into prophecy,
a promise, and she sees it all,
she sees everything, laid in front of her
and stretching out like a golden string
towards the vanishing horizon:
The sharp burn of dread at every twitch
and missing memory, jellied elegies oozing
from the center of others’ puffed pleasantries,
years spent watching her soul
get thinner and thinner, trapped
within a broken heap of matter and flesh,
cursed bone, misfiring electricity,
eroding endlessly, self destructing,
never ending, ending soon,
and, at last, alone, gazing back on a youth
spent gazing forward, ****** and dying
and derelict, and decades in the making—
she asks herself, what would she not give
for the chance to unknow,
to trade the dragon for the slow, soft lull
of the indifferent stars,
and to die whole and confused,
like the rest of us.
Jun 20, 2016
Jun 20, 2016 at 1:24 AM UTC