Resilient Lil' One

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"Wishing For A Better Tomorrow"
souhaiter pour un améliorer demain
Photo by: Lil' One

You might as well take Your shoes off, get comfotable and plan on staying awhile, cuz I got an aweful lot to say and share about myself, about life; as I've known it and now know it and about love, inner peace and happiness.If You keep scrolling down You will find my sections entitled "Words To Live By", "My Path" as well as "My Spasmodic Side" where I have an awesome collection of poems written by others who also suffer from Dystonia. If You would like to know more about Dystonia my blogs are full of information; Please take a minute to subscribe to my blogs while You are there.My guestbook is down on the right hand side. If You would like to sign it, just keep scrolling down it's not hard to spot. Anyone can sign it, even if You're just passing thru.You can post a "pic comment" just by clicking on the pic itself. You can also click on the author's name for a direct link to their personal profiles.

"Eye In The Sky"
examiner dans le ciel
Photo by: Lil' One

I believe everything in life is art
in one context or another,
self expression thru poems and pictures
that tell a story .... is my art

Richard Powers on art ...Art is a way of saying what it means to be alive.
The most salient feature of existence is the unthinkable
odds against it. For every way that there is of being here,
there are an infinity of ways of not being here.
Historical accident snuffs out whole universes with
every clock tick. Statistics declare us ridiculous.
Thermodynamics prohibits us. Life, by any reasonable measure,
is impossible, and my life—this, here,
now—infinitely more so. Art is a way of saying, in the face
of all that impossibility, just how worth celebrating it is
to be able to say anything at all.

"Deep From Within"
Photo by: Lil' One

Here's my thing; In an effort to keep my eyes open, I am trying to open the eyes of others, not only with my "Dystonia Awareness" Mission by "Putting A Face On Dystonia", but to the dangers of Perfumes and other smell good products as well. More specificly, the effects they have on the human body, Your body and every other body whose paths You cross, specially those of us who suffer from MCS. The world can not change, what the world does not know. Still the same, the world must be willing to change ... once it does know.

"Let There Be Light"
Laisser il y A Léger
Photo by Lil' One

Walk with me, see the world thru my eyes, even thru my times of darkness .. because even then there is light.

"The Seahorse & Hummingbird"
The Clouds Paint Pictures"
Photo by Lil' One

Resilience
by Amir

The ache silent, the void a home, night tranquil, loneliness pours on sorrows ice, candles burn, cry, tears melt past laughter, the walls make shadows I wanna forget, window cracked, cold sneaks in like a friend, wine makes my tongue lust and I take a big sip
Friday night, Saturday night, Sunday night a constant date with my mind, my memories, my lack of giving up on humanity
In a little house, in a little town, some place in time, reaching through, all livings hell to find the ones that still believe, scars and all, finding each other, keeping hope alive, knowing we're not alone even though we seem surrounded by the enemy.

"A Rose Of A Different Color"
Une Rose D'UNE Couleur Différente
Photo by Lil' One

"The happiest people don't have the best of everything.
They just make the best of everything."

~ Date Palm & Moon ~
Photo by: Lil' One

Live simply .... Love generously ... Care deeply .... Speak kindly
Leave the rest to God. You are the miracle, my friend, just as I am. Your life can either shine a light ..... or cast a shadow.

"Desert Rainbow"
Photo by Lil' One
The Soul would have no rainbow,
if the eyes had no tears"

"Yearnings Of A Soul"
Photo(s) by: Jan

~ Indian Prayer ~
Oh Great Spirit, Whose Voice I Hear in the wind.
Whose breath gives life to the world, hear me.
I come to you as one of your many children, I am small and weak, I need your strength and wisdom.May I walk in beauty, make my eyes behold the red and purple sunset, make my hands respect the things that you have made, and my ears sharp to hear your voice. Make me wise so that I may know the things that you have taught your children, the lessons that you have hidden in every leaf and rock. Make me strong...not to be superior to my brothers but to be able to fight my greatest enemy.. myself. Make me ever ready to come to you with straight eyes so that when life fades as the faded sunset, my spirit will come to you without shame."

~ Rio Breeze ~
photo by: Two Crows
One evening an old Cherokee Indian told his grandson
about a "battle" that goes on inside people. He said,
"My son, the battle is between 2 "wolves" inside us all.
One is Evil. It is anger, envy, sorrow, regret, greed, arrogance,
self-pity, guilt, resentment, inferiority, lies, false pride,
superiority, and ego. The other is Good. It is joy, peace,
love, hope, serenity, humility, kindness, benevolence, empathy,
generosity, truth, compassion and faith" The grandson thought about
it for a minute and then asked his grandfather:
"Which wolf wins ?"
The old Cherokee simply replied,
"The one you feed."

"Desert In Bloom"
Déserter en fleur
Photo by: Lil' One

~ Mother Earth ~
The Earth is our Mother, care for her.
Honor all your relations.
Open your heart and soul to the Great Spirit.
All life is sacred; treat all beings with respect.
Take from the Earth what is needed and Nothing more.
Do what needs to be done for the good of all.
Give constant thanks to the Great Spirit for each new day.
Speak the truth; but only of the good in others.
Follow the rhythms of nature; rise and fall with the sun.
Enjoy life's journey, but leave no tracks.

"In The Clouds"
Dans Les Nuages
Photo by: Lil' One

~ Our Mirror ~
The good you find in others, is in you too.The faults you find in others, are your faults as well.After all, to recognize something you must know it.The possibilities you see in others, are possible for you as well.The beauty you see around you, is your beauty.The world around you is a reflection, a mirror showing you the person you are.To change your world, you must change yourself.To blame and complain will only make matters worse.Whatever you care about,
is your responsibility.What you see in others, shows you yourself.See the best in others, and you will be your best.Give to others, and you give to yourself.Appreciate beauty, and you will be beautiful.Admire creativity, and you will be creative.Love, and you will be loved.Seek to understand, and you will be understood.Listen, and your voice will be heard.Teach, and you will learn.Show your best face to the mirror, and you'll be happy with the face looking back at you.

Dystonia is a neurological condition.
Nothing can stop it unless it is in remission.
Not degenerative progressive.
One has to give and to give.
It takes times entirety for a sufferer to live.
No modifications no change to ones home.
Muscles just pull and push.
We have this alone.
My comfort, my independence is paramount,
pleaseI have a disorder; not a disease.
Ask me, I will tell you.
Let your curiosity cower.
The look on your face;Why does it sower?

My poor body is shortened
And I have my head on my ear
But it suits me marvellously
And among the stiff-necked
I pass for one the prettiest
by Paul Scarron,
a French writer of the 17th century,
who suffered from generalized dystonia

"May The Truth Be Known"
Pouvoir La Vérité Est Sue
Photo by: Lil' One

DYSTONIA AWARENESS IS WEAK
by James Gallagher (AU) 2006
Dystonia awareness lies in what Dystonia is.Support and knowledge in the essence of normality that you give.
Task specific, early onset, are there others just like me?Blepharospasm is a Dystonia, sometimes I cannot see.
Dysphonia is of ones voice, it can affect the vocal chords.My voice may speak in a gasping whisper.I am not breathless, that’s absurd.Cervical Dystonia affects posture, movement in the neck.My head tilts forward, back or leans left or right.A normal response is not; “Oh heck”.“A Focal Clonic Tonic Anti Retrocollis”, is not normal, though possible it may be.Be aware, about Dystonia, as you may be or perhaps just knowOne. Out of 10000 of the undiagnosed, treatable 3.May life treat you with care and dignity.

My Passion
By Kathie Stehr
Poetry requires intensity.
I need to bring the burdens of my heart,
to my fingertips and write.
But my fingertips freeze,
the teardrops stop in my throat.
They never travel to my eyes
and spill on the page.

Dystonia is the thief.
IT robs me.
Passion requires intensity.
Intensity means feeling.
Deep feeling brings dystonia,
the thief,
in to steal.
IT makes the voice weak.
IT makes the head pull and shake.
The body draws up,
thoughts are forgotten,
buried under the pain.

Is it any wonder that we,
the victims of dystonia,
find difficulty in expressing
what we need to the most
Feelings of love
sadness
fear
joy
LIFE

I Wish

Frustrated Neck
by Brent
"Onemoregalaxy"
Frustrated Neck
by Brent
"Onemoregalaxy"

Frustration that I can't dispell.
God helps me a little or a lot?- oh well....
YOU! try and live life to it's full with the twitching-tightening rule.

I'll get over it when it's gone.
I'll stop all complaining when the madness ceaces to exist!
So deal with this!
I always miss out on the brand new dawn where everybody's playing

I get what you are saying,"try and think on good things."
And I get it when you react to my constant whine.
It might be all the time
I see you about every kind of messed up issue.

And I'm trying to get by.
Yes I'm trying to get by.
Someone find the cure for me.
No one knows the mental agony!!!!!!!

Oh God, Creator of my health
when you had me in mind,
I wait for more escape
-yes I've been worse,
but still I'm not so fine.

Please tell me, does everybody suffer the same
or do you let some get tortured a lot
and suffer much more pain?

If so, please tell me why?
And it's a torment that can't be silenced
when the tightening is in effect,
so it's really hard to think on good stuff
when my brain's flash'n red lights to reject
the overload of all the senses.
~ Concentration misses out ~

"turn away, just turn away.
I'm suffering from too much stuff poured in.
Turn away, just turn away."
"-but thats not helping!"
"TURN MORE!!!" "TURN MORE!!!" "TURN MORE!!!!"

Hey Brent, stop all this negative thinking.
"I'm trying too!!!"
Hey Brent just don't think about it.
"It's hold on the mind gets strong.
Keeps screem'n 'something's wrong!'
or is it a road of overload I'm on?"

I know I'm going to heaven
because Jesus forgave me for bad stuff.
That keeps me walk'n onward down this
way that seems so sad and rough.

Thank God. It could be worse
but lately it's gotten less better
than it use to be, and I want to see it
just go away forever.

Dystonia is
by Rebecca Serdans
I have lost yet I have gained.
I am stronger.
I am wiser.
I am more compassionate.
I am aware of the struggles of others.
I have evaluated old beliefes.
And developed new ones.
I have changed goals and sought new ones.
My philosophy of life has changed
For the better.
I have found the meaning of life.
I have moved ahead.
Even with dystonia, We all can.
We all must, Even with dystonia.

Madopar and Jelly Beans
Madopar and Jelly Beans
by Francesca Bernadette DiGiorgio
"Shut_Up_Fran"
Fiery, flowing ,cottered hair.
Baggy Denim Dungarees with eleven pockets, each filled to the brim.
Crimson Shoes as shiny as the rising sun in my bedroom window.

Jellybeans. Jellybeans. Jellybeans.

Dyed Aubergine, short, smooth hair
Fitted Indigo jeans with one lonely pocket ,encasing my mobile phone.
Jet Black ,lifeless shoes as heavy as my heart.

Madopar. Madopar. Madopar.

Scrumpled sticky sweet wrappers; my green scooter with a squeaky wheel; clouds with faces; Care Bares; Stickers and friendly spiders.
Are all my favourite things.

Jellybeans. Jellybeans. Jellybeans.

Peppermint tea; laughing so hard my cheeks ache; good doctors;
Good medication without side effects;
good friends; my ever shrinking mother.
Are all my favourite things.

Madopar. Madopar. Madopar.

The dickey dark with its creeping monsters and poltoghosts; being yelled at; edam cheese Sandwiches; mush-tashes; nasty doggies; being smacked so hard that the noise makes my ears Break; Homework so long that it makes my hand feel like it is dropping off
Are all the things I hate.

Jellybeans. Jellybeans. Jellybeans.

The shiver of death upon on my loved ones; My failing body that squeaks, creaks and wobbles as Much as my old scooter wheels; Bad medication with sickening side effects; The National Health Service; Distant friends; the words that get discombobulated which I could articulate just months Ago.
Are all the things I hate.

Madopar. Madopar. Madopar.

The orange and pink speckled glaze
The round curved shape, same as the baby in my mummys tummy
The shine reflects my face like a tiny mirror
In it I can see :
My Cheshire cat grin,
My ginger freckles,
My lake blue eyes,
My licking lips
The taste of a jellybean is syrupy and smooth.
It makes me happy as it pricks my taste buds with sweetness.
My mum smiles on
Reminds me if I eat too many
All my teeth will fall out. The tooth fairy doesnt come to kids whose teeth are caked with sugar.

Jellybeans. Jellybeans. Jellybeans.

The dreary grey and crude cobalt blue.
The bullet shaped capsule reminding me of civilian war
The glaze reflects my face like a sharp shard of a smashed mirror:
It shows me:
My grey complexion
The suitcases under my eyes.
My Mona Lisa half smile
The taste of a Madopar capsule is sharp, bitter,
like a lemon without zing.
It clings to my tongue needing to be ripped off like a
week old elastoplast before I can gulp it down

Madopar. Madopar. Madopar.

I both despise and adore this chemical lulling on my tongue
It reminds me how I will soon be free to move
Yet
It also reminds me of my fragility.
Dependent on a
Singular
Pill
To
Be
Almost
Independent.
How I yearn to be five years old again
How I crave the shiny oval shaped pod
To be a jellybean
Not Madopar.

a note from: Francesca
Madopar is a drug I take for my dystonia however for those in the dystonia know I do not have Dopamine Responsive Dystonia.

The Dance
by Linette

Tiny fishes dance inside me...
Muscular partners waltz.
Theres a tango in there somewhere...
Waiting to join the dance.
A full time hokey cokey...
A can can and a bellydance.

But I'd turn the music off completely,
If given half the chance.

Foxtrot in my waking...
Polka in my sleep.
Let the music play...
Heart Felt and Skin deep.
A Hippy Hippy Shake...
And a Funky Gibbon.
Now I'm a champion dancer...
And I won a BLUE RIBBON....

But I'd turn the music off completely,
If given half the chance.

~ Mother Natures Glorious Gift ~
Photo by: unknown

A Dystonic Poem With No Name
by Michelle Leanne
{MICHELLE} BELIEVES!

Some days I can, some days I can’t
You don’t understand and often rant.
I’m not faking, I do what I can…
Do you think I’d purposely ruin all my plans?

Sure some days I look okay
On those days I can even play.
I try hard and it’s driving me crazy
Yet you have the gall to call me lazy

But when I wake up,
And feel it fall,
I dread how long
I’ll be against this wall.

I take the drugs and the shots
They don’t make me feel so hot.
I try as hard as I can to produce
But some weeks it’s of no use.

Before this thing, I had a life
I was nearly a graduate and a wife.
Now I’m in psychological limbo ~
Will my neck stay up, or will it go?

Pop the pills, don’t make concrete plans
Very few people really understand.
I take the drugs, and try to adjust
I’m 22 and wonder why I must.

Week after week I’ve spent in this bed
With thoughts like these running through my head
Will you look it up, search for it’s name?
It’s Cervical Dystonia, and I give it the blame.

U2, Neil Young, Stevie Nicks, Elton John, James Taylor, Jimmy Buffett, Steve Earle, Lynyrd Skynyrd, George Strait, REM, Sheryl Crow, Tracy Chapman, CCR, Procol Harum, The Eagles, Cowboy Junkies, Joe Crocker, Shakira, Tom Petty, Santana, Guns N Roses, Aerosmith

~ My Son & Nephews ~
My Sister's Crew

~ Susie Q ~
One Of My Dearest Friends

~ My Dad & Son ~
Camping On The Coast

~ My Two Nieces ~
They're part of my brother's clan

~ Patti & Stormy ~
My Best Friend & Partner In Crime

~ Two Crows ~
One Of My Dearest Friends, Mentor & Hero
photo by: Two Crows

Idiopathic dystonia, Dopamine-responsive dystonia, Writer's cramp, Tardive dystonia, Chemical Romance, Cervical dystonia, spasmodic torticollis, Spasmodic dysphonia, Blepharospasm, primary, secondary, coping with Dystonia, muscles, spasms, sustained, botox, Oromandibular dystonia, Laryngeal dystonia, Cranial dystonia, SEGMENTAL DYSTONIA, HEMIDYSTONIA, MULTIFOCAL DYSTONIA, PAROXYSMAL DYSTONIA, MYOCLONUS DYSTONIA, Hypnogenic Dystonia, Sinemet, Prolopa, artane, cogentin, parsitan, Nitoman, Baclofen, Clonazepam, Carbamazepine, Tegretol, Benzodiazepines, Valium, Ativan, Lorazepam, Botulinum Toxin Injections, FOCAL DYSTONIA, dystonic tremor, Laterocollis, Anterocollis, Retrocollis,