CP Month–12 times a year

When I was born with cerebral palsy I could have died, with my circumstances, dying would have certainly made more sense scientifically speaking, I didn’t die. But, I have struggled because I’ve had chronic pain, surgeries and wheelchairs. All I can do is take things one metaphoric step at a time and one day at a time. After doing that for a while, I have realized that I have had a better life than I ever thought I could because I haven’t just survived but have found the good too, even within the bad.

After all, I have also persevered because I’ve had chronic pain, surgeries, and wheelchairs. Because of all those things I have been inspired to be an advocate, and help improve the disability community. Not to mention that there are things that are entirely good, I have friends and family, a college degree and I live somewhat independently. I have been honored to have the great opportunity of being a public representative of sorts for my community ,  I feel like I can really get to work.

Even though I still have bad days and difficulties to deal with as you do too, I wanted to let you know on this April 1, 2016 that having cerebral palsy isn’t always about surviving, it’s about thriving. To thrive with CP these days is so possible it is almost inevitable. People need to know of our successes as well as our struggles, so therefore I am extending cerebral palsy awareness beyond its month of March. Think CP all day, every day, people! To do that literally might be a bit excessive, but I want to make the point that improving disability awareness is a huge piece in the battle to get what we need in the world.

Therefore, I have returned to WordPress, with renewed inspiration and a new direction to inform, advocate, educate and enjoy the time I have helping people in a larger sense.

This blog is now more officially about my work, and less about poetry. Not that I have anything against poetry, its just that my poetry well has seemed to run dry.

 

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See

The media is an amazing way to spread disability awareness throughout society.

Exhibit A: My Left Foot.

Exhibit B: The Theory of Everything.

I’m going to keep my words on  The Theory of Everything brief because I could never say enough. It is spectacular. It is devastating. It is triumphant. This film’s insight into the reality of ALS is so much more profound than a bucket of ice water. As an advocate. and as my grandfather’s granddaughter I’m extremely grateful. See it. See…

See

See

glitter

see

glamor

see

action

see

reality.

See wheelchairs

see ALS

see cerebral palsy.

See the agony of

non-moving

feet.

See

that challenges

don’t always

lead to

defeat.

The Bottom Line

The Bottom Line

Paper hearts,

tacky teddy bears and

the phrase

“Roses are red,

violets are blue.”

If only you knew

that true love could not be summed up

in a piece of sugar

or in a beautiful bloomed

flower.

The truth lies within the eternity that true love provides,

that yearning that lasts from the

first nervous hello

to the last tearful goodbye.

When it comes

to true love,

that is the bottom line.

Valentine’s day is a reason for people to show love to those we care about, but really we should do that everyday. Because the bottom line is, true love has nothing to do with heart shaped cards.

With that being said, I will always accept flowers…

Bubbles

Bubbles

Writing words on digital screens

seems really safe and everlasting,

like bubbles floating forever

unspoiled by time or place.

But then  I imagine your face

ogling or obsessing about my words.

But even if you’re not, even

if you’re just a friend

it feels like an overwhelming friendliness

that leaves me rattled and unsure

because you decided you wanted to

be such an intense friend without

meeting me first.

Now I’m so uncomfortable

I don’t want to meet in person

or be a friend.

With all due respect,

kind stranger,

my bubble is burst.

What was I saying about how great technology is? Never mind…I take some of it back. Some people have eHarmony but I’m just eAwkward. The notion of bonding with a person deeply on a digital level, be it in a romantic sense or otherwise is still foreign to me, especially when it comes to people I don’t really know or never even met.

It surprises me that more and more people are willing to really open up to strangers online or even make relationship commitments with people they’ve never met in person.

I guess it really is a brave new world we live in…

By the way, if you think that I’m contradicting myself because I bear my soul on a blog, I’m not.I’m a very complex individual…I haven’t even begun to scratch the surface with what I do here!

Will I ever get comfortable and truly bear my soul to the world? Sure…after I score a book deal!

Techological Advancements

Technological Advancements 

People with significant physical disabilities can sometimes lead a bleak existence.

Often the only light, the only beacon of hope

to break this bleakness are

the technological advancements

that help us thrive within our differences

and triumph over weaknesses.

So that our pains  and inequalities

might soon be fixed,

we bask in the glory of our technological advancements, and

give thanks for the wondrous age we live in.

Because, after all,

Friends is now streaming on Netflix.

I love that show…

Ink Blots

I found out that today is Infant Loss Awareness day, so I’d thought I’d address babies and disabilities. Many people with disabilities like cerebral palsy are born under dramatic and traumatic circumstances that are anything but happy. Many babies struggle to survive after being born premature  because of low birth weight, under developed lungs/organs, and infections; and then of course these issues trigger difficult lifelong ailments. But then of course, there are those babies who don’t have life long.

Back in 1988, they didn’t have separate rooms in the NICU, my mother can clearly remember when babies next to me received their last rights.

I have dark moments in my life, but there are those lives entirely shrouded in black, bitter heartache. Families struggle to find light and peace because they want to preserve the memory of their child, but their memories are devastating.

There was this couple who lost their tiny baby a few years ago, they showed their son her footprints. They tried to put on a brave face for their son, they wanted him to know he had a sister, and to know that she was part of the family and that she was loved.

I saw the footprints, I was struck because they seemed like nothing but little inkblots on a page.

Inkblots

Ink blots of footprints signify a date & time.

There are blankets, bottles & bibs.

Sobs drown the silence,

there’s no baby in the crib.

Mirror

Continuing with the Halloween theme, here is a mini story of a haunting; because the paranormal isn’t always so frightening. I think that, hypothetically,  it could be comforting for those in grief. But I don’t have a spooky mirror picture to show, my “orb” didn’t seem to sway the gullible.

Mirror

She’s been gone for years

and I still can’t bear to change her room there

in that antique of a mansion.

The thought of removing her clothes,

her books and even her furniture

makes me scared.

Dust and dirt is everywhere,

and it’s covering her full length mirror.

There’s a blurry reflection in there that I can barely see

I know it needs to be cleaned

but I can’t help but be comforted,

because amongst the disgusting grime I suddenly find

the ghostly figure of my mother in the mirror,

and she’s smiling.

Scary Place

In light of Halloween season, I’d thought I’d speak about the dark scariness in my life, and for once that’s not a metaphor for pain. I am a very intuitive person, I am very in tune with paranormal activity and am drawn to it. Believe me or not, I don’t care, but I know what I know for myself. I’ve heard that this intuition can be the result of brain damage and neuroplasticity, again, believe it or not, I don’t care.

Regardless, I know that lights have turned on in my home, as have DVD players and cell phones. Things that I’ve dropped on the floor are suddenly back on my desk again, and things have moved and I’ve seen things move. Sometimes I feel like it’s my grandpa, but sometimes not. One night I was just playing with my iPad and I captured an orb on the thermal camera that I just couldn’t see with my eyes. When I noticed it, I tried to take more pictures but it wasn’t there very long.

Scary Place

At night my home can be a scary place.

The light mixes with the dark and creates a mystery,

and tonight I heard footsteps behind me,

but my friend was there.

I relaxed for a minute but then I was terrified,

because my friend uses a wheelchair.

orb

It’s small, but it’s there…

World CP Day

Happy World Cerebral Palsy Day! Oh…you didn’t know that today was a holiday? Its alright, to be honest I didn’t know until thirty minutes ago. Like many things in the disability world, CP and CP day certainly needs more specific awareness. Cerebral palsy is brain damage to the largest area of the brain and its symptoms can range from little nuisances that can slow down your day, to catastrophic detriments that force you to fight to stay alive. With my significant physical impairments and spasticity, I am somewhere in the middle.

Cerebral palsy is vague in its destruction, no one person is affected in the same way.  Its hard to generalize and many people need assistance in many or all facets of life. We rely on services and the kindness of others to survive and that’s all we can do, because there is no cure.

Somewhere in all the drama of the autism spectrum and cancer I think the urgency of cerebral palsy awareness was lost, or never even found. But I want it back, in my work as a disability advocate I will get it back. This is a valid fight among all the rest.

Gorilla

Cerebral palsy hurts,

it is draining and humiliating.

It is multifaceted anguish

and complicated joy.

Support it.

Because even though

its a gorilla on the back,

there’s hope when you least expect it.

I walked today…so if you don’t know anything about CP right now fine, but learn more because next World Cerebral Palsy Day I’ll be expecting a cake…