I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Monday
Oct082018

Reclaim Life

 

I'm ready to blast out. 

Reclaim life.

Be bold, take an adventure, make my move, my mark.

Not be afraid that life events will drag me back down again. 

Because, oh, they will.

They will pull and perseverate and gnash their yellowed teeth until

I let go and drop to the floor once more

roll myself into a ball

cocoon myself in my home, my bed, my quilt

not take calls

but the calls have stopped anyway, haven't they?

and it's not so easy to be a ball

it does tend to hurt the back, the joints, the neck, the grasping hands around the bent knees

but it's also not so easy to bend away from that petrified position 

once atrophy has set in.

How many freaking knocks can I take, anyway? 

I stand up and I'm punched in the stomach.

I bend over and I'm thumped on the back.

I strike out and my arms are slashed. 

The pain keeps coming, from all sides

until I learn to expect it

and that's when it stops, when I inch up, ever so slightly,

peel back the quilt, sit up in bed

but just when I start to trust the calm

pain returns, doubly so

[because it's tricky 

and it's not there to be mean

IT JUST IS THERE

Why me? I ask

Why me? You ask]

But I'm done

I've played the game

Been hit with

sick child/ misunderstanding doctors/ challenging school district/ humongous medical expenses

family strife/ my own illness/ more medical bills/ horrible credit card statements/ finding doctors

missing work/ disbelieving family members/ clutter/ more medical bills/ lost childhoods/ sadness/ too much stress

 

I take a breath

Maybe I understand my kid's fatigue better because I too suffer

But I will recover

I strive to be strong

to be back on my bicycle

and I do

I do 

I do recover

I am strong

I keep going

I am the example

I can do it

So can you

So can you

It becomes a mantra

 

I rediscover my need to not just stand up straight

but to stretch my back and challenge my legs

to be with friends and talk about something other than illness

to laugh

to sit in the sun

to laugh again

to hug others

 

to lie on the beach

and not be pulled out to sea each time

but to fight the undertow

I fight

because that is what I have become

I compartmentalize

because that is what I must do

I find pleasure in moments

because that is the way

to survive

and now 

that is no longer enough

I have no control over the fate of my child

over the course of the disease

I have no control over my own internal organs that are affected

but I will forge ahead 

and begin, once again, to dream

I wanted to travel, write, experience LIFE (not sadness, although that is a HUGE part of life, to be sure, and once upon a time, I believed that sadness and agony were crucial to a good artist/writer but I swear that I've had more than enough to write a zillion novels by now)

I need to remember my dreams

remember who I am

before this

and after this

and even, during this

I am exploding out of my cocoon, grasping back the life that waits

telling my children to follow my example

for through my strength they will bloom

there are still moments of

grievingstressanxietydespairdesperationdepressionrollintoaballdontletmegohugme

and

lifesuckswhatdidIeverdowhowasIinmypastlifewhywhywhy

There are more moments of

I can do this despite

I will go beyond

We will 

I hand you my ball of strength

it can be shared like fire

Use it well

and pass some on

 

Dedicated to a special friend, to all my special friends, the kind who will pass this energy back when I most need it. With love,

Lisa W-K

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