A couple of weeks ago my aunt asked me,
what the first thing I noticed about a girl is.

''Her hands''.

The conversation quickly turned *****,
''you just want to know what they are able to do to you''.

At first,
I thought it was funny,
almost agreeing with the statement that had been made but then,
I realised that we all want what we can't have.
Looking down on my own hands for ages thinking that I wish they could just function.
I have been looking for the hands I have never had,
in the girls I have been debating whether or not they were,
girlfriend material,
judging my looks,
my hands,
my shape and my face while other girls wants what I have.

After realising just that,
I decided that from now on,
I will stop looking at hands and look into their eyes instead.

(e.k.j.)

I am invisible.
When you observe the Earth from space,

I am invisible.
When you look over my country,

I am invisible.
When you scout my town,

I am invisible.
When you pass me on the street,

I am invisible.
When you gaze through my eyes,

I am invisible.
When you speak at me,

I am invisible.
When you hold me,

I am invisible.
When you have me under your sheets,

I am invisible.
When you say you love me,

I am invisible.
Can I exist if

I am invisible?
Should I?

I found my light
in not doing what's expected of me,
but in doing what's best
for a 7 year old
who lost his baby sister
and his train of thought
when counting to 20
because iPads download games in seconds
but it feels like years he's watching an ad
depicting guns and blood and dying and
every time he points a finger at a friend
the law tells me
I have to call his mom
who has no response to
"I just didn't feel like doing math today,"
but musters up every ounce of energy
she doesn't have
to expel one weak statement-
"We must do what is expected of us."

They tell me that restraint
is 3 seconds or more
of student resistance
and teacher persistence
but while my hand never touches him
my words wrap around his legs
telling them to stop pacing
and they cover his mouth
telling it to stop singing
and when he cries in the hallway
at 9:52, screaming,
"I hate this school,"
I cannot explain to him
how lucky he is
to be surrounded by adults
who fake a high tolerance
for his constant fidgeting
so instead we sit in silence
until his anger runs out
and my heart rate slows
and we are ready to try again.
Later, he hugs me.
I do not pull away.
This is not restraint.

Though in dexterity my  physically challenged  carpenter father,
Than  the physically fit proves better,as a source to his anger,
With contemporaries a level ground  he enjoyed never!

From late childhood there was one thing that me used to bother,  why my so discriminated father
On his turn true to cultural dictates,ill treats my domestic chores saddled mother
And heeds not her say though by the sweat of their brow
As responsible parents they were happily bringing my sister and I together?

I still wonder why ,why ,why my sister who has IQ
On par with me if not better,to help out mother
Suffering a cold shoulder even by her mom was denied the  right to pursue education further
While I was given a chance to prove a man of letter(s)?

I remember, crossing many a pool, barefooted, I used to trek
A long distance to a nearby town's a  school,
Where for my  provincial and shabby clothes I was seen a fool
By the relatively rich  in showing courtesy far from cool.
Though stationery they didn't lack , sad,I had a hand tied behind my back.

Alas,up on joining campus where I yearned for the sagacious a chance
There too  in my class,I was looked down by students
Hailing from families of the top brass.

When I went abroad for a higher education enjoying fellowship and donation
Worse still, I met many, colour has coloured whose vision.
Ironically my dissertation was drawing attention
To why should the broad mass be standers by
And with ill-fate marked die
While the favoured ,racist and the corrupt few gobble over 3/4 of the pie? /

Imagine that randomly through out the day, your legs quit working. No matter how well you explain the science of it all, nobody really understands. "Why don't you just.. idk, stand up?"

Imagine that randomly through out the day, your nervous system shuts down. No matter what you say, explaining time and time again the science of it all, nobody really understands. "So you're telling me that you can't feel? That's stupid. Just start feeling. You're fine"

Imagine that randomly through out the day, you feel like killing yourself. No matter how many times you try to get help, nobody really understands. "Nobody just feels like killing themselves. You have a good life, you're happy. Just cheer up a bit."

If my disability was physical instead of mental, everyone one care alot more.

My father tells me what should be my first memory of hearing:
A car scuttles up the gravel hill in front of the home I loved.
I drop my chalk and run to the end of the driveway,
as if I am chasing the exhaust of fumes sputtering out the tail pipe,
wondering what on earth is that strain of air
since I was not given sound from birth.

At my testing, the audiologist put me in a soundproof booth:
The ocean has forgotten to pull its stitches together for the life of it.
I want to scream that I feel like I am drowning
as the waves tormented me into debilitation,
kicking for a gasp of air, just anything to break the current.
I cannot keep myself afloat.

My friend’s voice is the most beautiful I’ve ever heard:
Her laugh makes me want to jump in euphoric joy, like she’s dosed me with ecstasy.
I can see her smile and it speaks all the words I don't need to hear.
When she repeats a story for the third time, I do not mind
that she trusts me with her voice and her whimsical light
since she is the only one patient enough to put up with my aggravating nuisances.

That night at the David Gray concert, my God what a beautiful night:
I am so familiarized with the stretching of violin strings and guitar plucks,
Gray’s hypnotic vocals roaring into my heart with the bass thumping
into my disabled ears, rendered quite useless until I have tasted such delightful surprise
with so many of my favorite noises encasing me into their world,
that I have forgotten my own disability.

It peeves me when I am with others:
The muffling of girls whispering once the lights are out;
my stepfather keeping the TV volume low and does not provide caption while the movie rolls;
how I answer the question with the wrong response and receive confused glares.
I am a lonesome tree in the woods
with no one around to see my inevitable fall as the fire plagues on.

A technical transition last July:
Misery trenched my mind as everything rang louder-
the shuffling of my hair against my ears bothered me very much so;
I heard women talking from three tables over at the pizza place.
First given nothing, now having too much,
I am not appreciative of all the sounds in the frantic tussle of daily life.

A forest begins to chill at four o clock:
The leaves flutter on the terrain in a dance no one knows,
the sun warms me in a song with lyrics I can’t comprehend.
I am relishing what is given to me, that even though I am broken,
I still realize that I would much rather be deaf
than to ever go blind.

i kept a calendar when i was younger. i filled the columns with big round handwriting and coloured them with markers. the page for 7th - 13th november looked like this:

SUNDAY: -
MONDAY: doctor's appointment
TUESDAY: -
WEDNESDAY: english exam
THURSDAY: -
FRIDAY: -
SATURDAY: i'm going to **** myself today

i chose a green marker for the background.

that morning i got up early. i brushed my teeth. i put on a warm jacket. i went to the pond to feed ducks.

the body is 60% water. i learned that in school.

the body is 60% water, 30% sorrow and 10% coal dust and i never learned that anywhere until it had already spread inside of me, turned all my organs brittle and grey.

the body is not meant for this. i learned that the hard way.

there is a point, eventually, after the hundredth doctor's appointment, after the fifteenth conversation where you bare your teeth like a snarl instead of a smile and you say you're fine and they say they're fine and you-

there was a point, but i lost it.

i spent two hours feeding those ducks. my face was burning from the cold and i couldn't feel my hands. it felt like they belonged to another person. it always felt like that these days.

i wondered whether other people could see the puppeteer's string they were all tangled up in like the world's most morbid arts and crafts project. sometimes it felt like a ****** up retelling of pinnochio, only i don't turn into a real boy at the end.

it's not that i wanted to die. it's just that i kept dreaming of drowning. the body is 60% water and i wanted to wade into it until the world around me had disappeared and my lungs were filled with the same stuff i had been swallowing in my sleep for years.

i was submerged halfway up to my stomach when my phone rang. i still don't know why i picked up. maybe it was the person my hands now belonged to who did. my mum's voice was far away like the world on foggy winter mornings. she wanted to know where i was. she made pancakes. she wanted to know when i was coming home. she loves me.

the leaves were tumbling around me like falling bodies.
the sun was hidden behind clouds.
my hands were shaking and the sky was howling at me:
live; live;
live.

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.