The sky is falling

There it is,

the reality of my life now.

Goodness followed by intense fall-out, grief and anger.


Always, badness.


Living in a world like this-

handicapped-yes, handicapped;

no one understanding, and if that isn’t enough,

pain, pain, pain

followed by no money, no home and no family.

This is the world I live in.


Overachiever as a youth,

and then as an adult.

Never finding the right place-

until right before I got sick.

Down, down, I go

waiting on the ground to meet me

as the sky falls, and I fall, down.


When will it ever stop?

I don’t want a life like this.

I am tired of holding on, believing, letting go, praying, meditating and

all that shit to make it better.

It WILL NOT be better- it JUST IS.


I pray for my old peace,

Poor but peaceful.

Maybe, not so poor this time,

but peaceful.

Please let it be quiet, calm and …

just please make it stop


the sky is falling and I can’t find my ground

I can’t find my safe place, my hope, my dreams

The sky is falling

the sky is falling…

IMG_6678 (2)


IF only…

If only you could understand

what it is like to be ok one minute

and then in extreme pain the next.

The shame that follows..thinking that I could have

done something to make it happen.

How the pain holds on…and I am forced

to live in the nothingness until it passes

How does this happen

to someone who was good

who was helpful

and …

How does it happen?

That I am back with a living situation

that has issues

How is it possible that I can’t afford to live?

Or be?

Or be without pain?

If only…

you could understand

and make it better

because I don’t want it anymore.

If only…

the pain would go away


and not come back

If only…

Will you choose me?

Will you choose me?

After you saw the rubble?

After the philosophical conversation?

After the showing of my doubt?

After I announced my anger at God?


Will you choose me?

Will you walk away before we progress?

Will you turn away and not look back?

Will I understand and bid you farewell?

Will I be able to cope with the rejection?


Will you choose me?

With my challenges?

With my financial instability?

With my broken body?

With my unseen future?


Will you choose me?

Will you remember my good graces?

Will you remember the dance?

Will you remember my hands on your body?

Will you remember our connection?

Will you take the chance?


Will you choose me?

IMG_6616 (3)

Holiday…gone awry

How does it happen?

After years since the pain started,

I still think that it will be different.

After years of relationships,

why do I think it will somehow be perfect?

How do I forget the idiocy of this illness?

I forget because I have to-

to survive, to continue living, to be happy

I forget so that I can-

live with grace and gratitude

How the hell do we take it?

How do we wake up and smile?

How do we think that Santa is coming down the chimney

with toys and joys anymore?

It just goes on-

these unbelievable errors in thinking

These heart aches and body aches

and moments of reflection into nothingness

how do we make it through these holidays

every year without crying or wanting to do so

how does my dog remind me that life goes on

whether through tears, fears or joy?

how do we do it?

how do we trust that tomorrow will be ok or even good?

how do we trust when we are deceived so constantly?

it must be the human experience,

the hope for a better day, tomorrow or moment

the need for security and love.

How do we take it on?

How do we survive it?

The craziness of this illness-

like a dysfunctional family,

waiting on the shoe to drop?

Why did I believe my doctor?

Why didn’t I question him?

Because I needed to believe.

Because I wanted to find happiness-

just one more time.

How do we keep going?

13 years now since the diagnosis

and I sit here, writing, crying

waiting on a new day

so that I can remember how it felt to be well,

and sane,

and not fooled by this pretentious little shit

called pain

IMG_4852 (2)


Well enough

Being well enough to be social

The summer…ahhh…summer

Being well enough to realize just how sick I am.


Out in public or at someone’s home

then feeling the pain

The pain that reminds me I am not well

Well like the others at the same event

Well like them, well enough


And, so, it goes

Well enough, well enough, well enough

to be sick enough to not be well

but well enough to go and remember how sick I am


And, so it goes…



And, there it goes.

My free, 1991 Oldsmobile.

Traded it in for a too-high interest loan on a crappy, little Chevy.

I was so thankful when someone gave me that Oldsmobile…

Free.  Lasted 2.5 years.  Affectionately named Kojak.

It meant everything to me when being sick.

I could get to the store.

I could get to doctor’s appointments.

It was old, beat up and roomy.

I got used to it.

In some way, I loved it.

However, I just decided that I had put enough money put into it,

so I went to get a car at the only place that would lend to someone on disability,

with barely any income.  Not to mention the debt that I accrued trying to survive.

So, here I am.

The “used-to-be” middle class, Master’s Level, 54-year-old,

selling my soul for a 3.5 year loan at 24% interest rate.


My heart is so heavy

that I feel it in the pit on my stomach.

Life after diagnosis and onset of my illness:

I now live in a one-room apartment with a kitchenette;

I use the Emergency Food Bank,

and I don’t buy clothes much anymore.

Yet, it will be worse next month now having a car payment.

How will I manage?

I am, as they say, poor.  I am the white, middle class, sick, poor person.

Being sick isn’t enough…I have to also feel like a total loser now.


I wonder if I’ll miss that Oldsmobile…

or if I’ll ever embrace my 24% interest rate, Chevy.

It’s such a symbol of my life lost;

It’s the plight of a chronically ill sick person.





I continue to chase myself.

The me before.

Before the fibro and seizures,

Before the ongoing pain,

Before the moodiness,

I remember.

Perfectionist, Do-gooder, fitness freak.

I know you.

Ten years after the diagnosis, I am still chasing you.

I manage, I remember I am not she, but I still try to catch you.

One good day, two good days in a row,

And I begin to think that I am NOT sick.

I am her again.

And then the next day, I am confronted with the truth.

I am no longer her.

I am no longer someone who can go at that pace.

I try to quit chasing for a while

And then it returns,

That gnawing need to find her.

To be her.

To be like other people, free from this situation.

Again, I am reminded that chasing her is like chasing an illusion.

It never fails.

I become me again.

Tired, in pain, and taking meds.

I am this me.

I was that other me,

but now I am definitely this me,



Here it comes again

Well, it’s fall.  Again.  Here it comes…

Colder weather, partial sunny days and PAIN.

How is it that summer is so short and the change is so abrupt?

My body, once “mostly” happy over those three cherished 3 months-

June, July and August, is now expressing itself …and it’s angry!

Every year, it has become more noticeable, and this year, the change

SCREAMED at me-“buckle your seat belts, it’s gonna be a bumpy ride.”

I love you, June, July and August; if I could, I’d adopt you.

I’d make is so you would never leave.

My body just has more energy and less pain with you around.

I can be honest-my body just prefers you.  Your once-a-year visit

is NOT enough.  Much gratitude.  xoxo




Oh, Spring

I am waiting for you, Spring.

Why do you hesitate so?

We need your presence.

Force away the rains of winter,

and open up your heart for the sun.

We, the ill, need you to rescue us.

Make the earth warm,

Make us warm

Let us see your magic.

Don’t hold back any longer

Show us the green, the light and the flowers

Make us believe that wellness is around the corner

Make us know that we can weather the next 6 months

With sunny days, warm nights and fireflies.

Let the fireflies go.  Let them go.

So I, again, can dream of no pain and ongoing light.

IMG_7041 (2)



Dying. When you’re young.

My brother is very sick.

He is only 57.

However, my mother died at 48 and my father at 59,  so maybe not so young.

Having been ill for almost 10 years now, I sometimes wonder about death.

Will it come sooner to me?  Does being ill mean death?

I have lost so much.

But I never seem to die.

I think about dying.  I wonder if it’s time.

I wonder if anyone would miss me.

I wonder about my dog.

I fear writing this.

I fear saying my fear-of dying.

But, we’re not here forever,

and blogging doesn’t meant I have to impress.

But, I have to say, when is really too young?

When will I feel truly alive again?

When I feel gratitude, I am alive.

When I see my dog’s silly face, I am alive.

But what about when things seem to be so bad…

no money, no real job, no real companion,

nothing but pain.

Is that dying?

IMG_6928 (3)