Friday, December 31, 2010

party time

To party, or not to party...

Tonight, after a simple, cozy dinner
at home, with David
we will both curl up
with books...

Me, I'm an old fashioned girl,
I still like to the turn pages,
feeling the weight of the book,
touching it, possessing it til the end

David is a bit more modern;
he's hooked on the kindle
that our daughter bought him
for his birthday last year...

I think it's the immediate gratification
of clicking to the next book
as soon as he finishes reading something...
David is panic stricken
at the thought of nothing to read...

But as my friend Edwina often says,
"I digress..."

I don't really enjoy going to parties...
I like giving parties...
especially for someone else...
I've even co-chaired three charity balls,
each one for more than eight hundred people...

The details of planning something wonderful
because you love someone,
creating a memory, a moment of time
that you have spun into a dream
then gave to someone...
that to me is a party...

I like dressing up for parties...
little girls and playing dress up...
Do we ever really out grow it?

I was trying to remember
just when I stopped liking parties...
and I actually think I was about four and a half...

I was invited to a birthday party
in the apartment complex where we lived...
The little girl's name was Tristi
and she had a younger brother named Mikey.

I remember being very excited...
Everyone in our apartment complex
who played together was going to be there...

I had a new power blue party dress
with a swirly skirt and a satin sash to wear...
I even had a pair of shiny new black patent maryjanes...

This was a really big deal for me
because I usually wore thick corrective shoes
that one time even got stuck in the fence
when I tried to climb over it
with everyone else...

I don't recall most of Tristi's party...
I only remember how it ended...

Tristi lived in an upstairs apartment.
As I was saying good by at the door
I turned to leave
and Mikey came out...

I can't tell you what he said
but he shoved me HARD!

The soft powder blue party dress
floated above my head like waves
as I tumbled down the cold cement stairs,
my shiny black patent leather maryjanes
far above me, the toes looked likes birds
ready to swoop down
and grab a fish out of the ripples of blue
as they quickly moved away...

They took me to the emergency hospital
for stitches to my cracked open head...

Although I was very sleepy the next day
Tristi and Mikey came over to see how I was
and to bring me a present...

Mikey also had to apologize...
and say he was so sorry
that he was even giving up his own birthday party...

Before they left, he managed to sneer at me,
whispering under his breath,
"I'm glad I'm not having a party this year,
cause you would just ruin it anyway!"

I remember crying when they left
but everyone just thought it was
because my head hurt...

Happy, happiest New Year ever...

Tuesday, December 28, 2010

some days

some days
it's as though all the sadness
in my heart decides to run away
and uses my nervous system
as a road...

today is one of those
some days

there seems to be a traffic jam
going on inside of me
everything is so heavy
weighted down
doesn't want to move...

I'm no sad slug
no mud wallowing snail
if my limbs need dragging
I'll drag them...

I silently applaud
as I lift my arms
ever so slightly
and tap the keyboard

I can do this
what else can I do today?

Wednesday, December 22, 2010

just because

I've been busy making my holiday truffles
and my head is filled with more chocolate
than words...

If you can,
try to do some random
act of kindness for someone
just because you can...

I hope all of your holiday dreams
are coming true...

Somewhere among all that chocolate
words are swirling, bubbling and brewing...

Happy Holidays to All
and to All,
Sweet Dreams Every Night!

Wednesday, December 15, 2010

kissing boo boo-s

Today my twins, Ariana and Brandon, are 35 years old.
On the movie reel of them,
the one that continually plays
inside my head,
I can see them experiencing
so many childhood moments...

I can still feel the weight of them
when they were first put into my arms...
hear the softness of their breathing
against my cheek as I held them
so close...so close...
vowing to protect them,
cherish them, teach them...
try my best to make their dreams
come true...

One of my dreams was to be a mother.
I'm the oldest of four,
I was always baby sitting,
I taught preschool and Saturday school...
I even wanted to be a Gramma
when I was old enough.

But kids do grow up
and they should...
Each stage of life offers opportunities,
perspective, understanding, deeper loving
and unfortunately, sorrows...

As I write this tonight,
I can still smell the baby powder
as it blended with my Shalimar...

Ariana has systemic lupus...
I'm there for her 
but it's her fight
and she's a Warrior Goddess...

Brandon has his own demons
to conquer and sadly, for now,
he's not letting me be there...

I wish it was as simple
as it was when they were little
and everything was alright
after Mommy kissed their boo boo...

Saturday, December 11, 2010

moonstruck

Every night I am newly bewitched,
transported and tempted by the moon...

I have written image after image,
poem, after poem...
trying each time
and every place where I am looking,
to if not perfectly,
then spectacularly,
capture what I am seeing...

The delicate mother of pearl bird
that is the new moon...

The spicy, sassy lemon slice
half moon...

The wanton, whirling, spinning egg moon
before the circle is complete...

What can you say about the grandness
of a full moon...
the ribbons of shimmering diaphanous light
that dance across the velvet sky...

When I was three,
I named my favourite doll,
Diana, after the Moon Goddess...

I believe that all babies
and small children
should be read, Goodnight, Moon...

When Ethan and I are apart
in our dreams
we rendezvous on the moon...

Yes, I am certifiably moonstruck...
but as I write this,
the movie, Moonstruck, comes to mind...

There is that wonderful scene
when a love sick, sort of dopey,
Nicholas Cage tells Cher that he loves her...
and Cher hauls off and slaps him silly...

"SNAP  OUT OF IT,"admonishes Cher...

As this year begins to fade
into the shadows of time,
I was sort of fantasizing
about all the people
that I would like to haul off and slap
just like Cher did in the movie...

Some of these people I know,
some are celebrities or famous,
some are people you just hear about
or read about,
people who are busy minding other people's business...

Well, Cher's slap in Moonstruck
turned out to be a wake up call
even for her...

And there's nothing so bad about that...
or a good old fashion
Snap out of it either...

Monday, December 6, 2010

notes to myself

Since falling a few weeks ago
I'm finding it more difficult
than it usually is
to put myself
back together again...

This was the first time
I fell on my back
and I banged my head
in the bargain...

As I patiently rest and wait
I've been making an unusual amount of notes
to myself...

It seems like when you're not doing very much
there are an improbable number of things
that you need to remember to do...

There's the magnetic list on the frig:
things to be bought at the market,
the pharmacy, Target, the bookstore...

The little cube of paper squares by the phone,
the one that's so pretty when you choose it,
that day by day whittles down
until you don't remember the design on the sides...
that's where I write down all the calls...
the calls to be returned,
the calls that need to be made,
the appointments that need to be scheduled
and rescheduled...

I also have coloured index cards...
I write things that are important to me on them
and pin them on the bulletin board above the computer...

I have a green one pinned there now
with a Chinese Proverb on it:
Your life begins
when you plant a garden...

My own garden has had a few sad seasons...
The weather has been erratic
I've been distracted physically,
emotionally... and so I've been neglectful...
Though I've been disappointed
by the loss of plants I nurtured;
I've also been happily surprised
by the strength of others
as well as the delightful appearance
of those plucky little volunteers...

A quick aside to those who do not garden...
Volunteers are seeds that sprout like
will of the wisps, here, there and everywhere
in your garden...carried by the wind, birds, insects
they are uncanny, magical and reaffirming...

There is a purple index card pinned above the computer too.
On this card I wrote:
A person who sees radiance where others see objects...poet.

Beside my bed I have a tiny note pad
beautifully embossed with the image of a butterfly
that my daughter brought me from Sedona...

Maybe because of where I keep it
or possibly because of the evocative way it looks,
this is where I write all the little things...
dreamy things, whimsical, illusive, intangible, wishful things...
but I also write some big, loopy, crazy things here,
things that pinch me on the inside until I get them out...

This is where I scribble in purple ink,
I want to live my life as i dreamed it...

My heart is fragments, stained with tears...

I want to scream until someone really hears me...

why is it so difficult to make a difference?

There are even sticky notes on the desktop of my computer.
I haven't started leaving myself notes there...
although just the other day I found one...

I love you, Gramma, Ethan

Tuesday, November 30, 2010

november 30th

I really have missed writing in this cozy little space...
It's still difficult to sit here for very long but I wanted
to get back to putting my thoughts into words...

I've thought of so many different ideas that
are perfect for sharing
and eventually, I have no doubt,
that most of them will push forward
in my thoughts and dreams,
tap dance around on my brain,
scream in my ear at an inappropriate moment,
and jump forward with an independent will
thru my fingertips and onto this page.

I have been writing about these ideas
in my dreams and day dreams...
I do that quite alot...
I also write in my head when I'm taking a shower,
in a car, watching television, painting...
I'm able to see my thoughts quite clearly...
the words, the images...
exactly how it will look on a page...

This has not been the year I imagined
it was going to be...
not even close...

It still has been a year of discovery,
unexpected random kindnesses,
and the pleasure of loving
and being loved by some amazing people
and delicious dogs...

As I look towards the future,
this is something I know...

                Life
                is
                a
                giant
                puzzle;
                which
                piece
                should
                I
                choose?

Monday, November 15, 2010

60 years and 5 days

It's been five days since I turned 6o...
and quite honestly,
nothing has changed...
nothing big, nothing small...

I'm still me; searching, waiting, wondering...
maybe wishing and expecting...
I haven't done anything very different
other than lived for 60 years and 5 days.

Did I imagine that lightning was going to strike me?
Maybe I secretly felt like I was going to win the lottery
even though I've never bought a ticket...
Inside my head turning 60 grew and grew and grew
until it hung on me like beads or vines,
tangling me up with nowhere to go...

I think it's time to start unraveling
the beads and the vines,
choose any direction
take baby steps or giant steps
and go forward...

Tuesday, November 9, 2010

counting cobwebs

When I was sixteen I wrote a line
about being alone and
life feeling like a set of encyclopedias...
anytime you wanted to remember something,
you just looked it up...

In one more day I'll be sixty
and oddly enough,
life feels exactly like sixteen year old me thought it did...
if I want to remember...

That sentence was part of my first grown up
dramatic, intense, I don't care who reads this
I'm writing it anyway, automatic writing exercise
I wrote for Mrs Bruce's 11th grade Creative Writing Class...

Over the years I have come to realize
how much that writing exercise actually means to me...
It is my touch stone, my talisman,
the essence of me as a writer
as a woman...

In some small way,
every time I write something
I am rewriting that exercise...

Writers find a myriad of ways
to tell the same story,
their story,
strengthening the core
with depth and breath,
colour and style,
and the unique perspective of who they are...

The last few weeks my husband, David,
has had an itch to clean out our garage
and every other space he considers "too cluttered"...
"What are you saving that for" is bouncing off the walls,
smacking me in the head
and making me angry enough scream
and scream and scream and maybe not stop...
But I don't...scream...

Instead, I ask him very sweetly not to do this now...
because of my birthday...
I can't handle it at this moment...

I know that I'm a bit of a pack rat...
OK, maybe a little more than that...

I'm just already busy enough...
And I'm vulnerable and fragile and emotional...
I don't want to see all my stuff
laid out like an offering to some other worldly creature
or surrounding me like my life,
"The Ultimate Garage Sale"

I've been mentally cleaning house...
sorting thru my set of encyclopedias...
wondering, pondering, remembering...
and doing the actual and the mental cleaning
at the same time,
that is simply too much to bear...

I feel like we're living in two different dimensions...
David walks by me,
talks to me, I even answer
but there's a curious distance between us
I'm floating on the edge of a softly illuminated space
that exists on a scrap of fragile parchment
inside my head in an old set of books
that no one else has ever read...

David has almost finished his cleaning project
and though I'm still sort of, kind of, maybe,
a little bit mad, I also don't seem to care as much...

Everything matters, nothing matters very much...

I can't seem to put those encyclopedias down yet...
All the memories keep reverberating, resonating,
haunting, taunting, teasing and pleasing me...

This is the last thing I wrote in my writing exercise...
The world is so big and I'm so small in it.
One day I want to feel as big as the world,
I can't say just why, but I do!

Monday, October 25, 2010

when lightning struck

I was turning out my beside lamp
when suddenly
my head was smashed
with an explosion of pain
and light and bright
and a wave of dizziness knocked me backwards...

I wanted to scream
to throw up, to cry
to bury myself under my comforter
to pass out and float away
to oblivion...I didn't care where that was...

It was raining outside,
a lovely lullaby of pitter, patter and ping...
Instead of rocking gently to sleep
lightning struck me between the eyes
in the shelter of my own room...
The only thing rocking me
was a migraine that legends are made of...

When did I get trapped inside a jack-in-the-box?
Up and down...Up and down...
I've had headaches like this before
but not in awhile...
Up and down...Up and down...
I couldn't remember what to do?
Let me out of here...please...please...

I rushed to the bathroom sink...
I thought that I wanted to throw up
but I didn't...
Cold water...I splashed some on my face...
As I'm drying my face off
I notice my reflection trying to tell me something
but my head starts pounding and I'm dizzy again...
All I can think is make it STOP!
Make it stop before my brain escapes... 

I put my head down on the cold bathroom counter
wrapping my arms over it and squeezing tight
as if this will hold everything in...
I need to take my pill.
I need to get my ice bag.
I need to drink a real coke.

I left my head resting on the cool bathroom counter
where I felt temporarily safe...
but the feeling was gone with a FLASH!

Fireworks...I love fireworks!
Why are they stinging?
Why are the fireworks blasting straight into my eyes?

Memory is a peculiar entity...
sticky, adaptable, adjustable, precarious...

Somehow I ended up on the family room couch
curled into myself
like a snail within its shell
hoping to protect my head
which seemed so soft,
so destructible...

Rain was falling in gentle circles
on the pale blue surface of our pool
when David came to wake me up
and guide me to the warmth
of my own bed

"Go back to sleep," he says softly.
"You need your rest after lightning strikes."
I think I was smiling as I closed my eyes...

I slept on and off
as the rain fell
sometimes gently, sometimes not
that whole gray day

Wednesday, October 20, 2010

rainy days are not free any more

I have always loved rainy days...
but now, it seems like with most things in life
there is a price to pay
for the simple pleasure of a rainy day

As the rain approaches
the air shifts and swirls
the atmosphere and
the barometric pressure are rapidly changing
and the climate inside my head
is dancing, foggy and like a thunderbolt
about to knock me over

I know that I will have to take my migraine meds
it's all the other little tiny tolls
when added together
total quite a tidy sum

My bones wine and whimper
then screech and moan
My eyes pulse and throb
I don't want to leave them open

I'm not very sociable
and I start poking around
deep deep inside myself
trying urgently, recklessly
to solve all the puzzles
of my life, salve the wounds
sort out the child

I don't know if it's the medicine
or the companionship of the rain
it just happens...

It's nothing like the "mud-luscious"
"puddle-wonderful" world e.e. cummings describes

So with one eye half closed
tucked under a bag of ice
I stare out the window
putting all the energy of the painter
and the poet inside me to work

The gray sky is translucent
shimmering like a pearl...
When the rain begins to fall again
it makes a light tapping sound...
Is someone trying to send me a message?

Then the pace picks up
wrapping my window
in a curtain of thick crystal rope...
Lightning crackles...
"Spells are being cast," I think...

I lean back against my pillow
feeling all the potent magic
I remember about rainy days
wrapping around me like a shawl

Tuesday, October 19, 2010

the nice girl

Nice is one of those words...
the kind that isn't very exciting to use...
a word when paired with someones name implies,
she's boring, bland, plain, dull, prim, prissy, proper...
or she's a goody-goody, a namby-pamby, mealy mouthed,
too nice for words, she's ordinary, okay, vanilla...
Who would want to know her...
or be her...
but the truth is, lots of us are her
we just don't see ourselves that way
until the nice girl dilemma slaps our nice little face

Before I continue, I must also say
that my trusty Synonym Finder also describes nice as
agreeable, friendly, cozy, elegant, benevolent...
as well as polished, gracious, understanding and sympathethic...
I think more of us nice girls might actually see ourselves this way...

When someone is using our very niceness
as the way and means to hurt us,
over look us or keep us where they want us,
all they see is someone who is kind,
has good manners
 and would never dream of making a fuss
as they are stepped over...
anything that splinters or shatterers
collateral damage...

When I was a very little girl
I used to spank my favourite dolls
crying as I did this,
"I love you but..."

As I think back on this legendary tale
from my childhood
it's easy to trace the beginning
of my nice girl...

when butterflies made all the noise

I have been
a woman who whispers
hiding under hats
behind dark glasses
my voice still water

committed
to inverted screams
that ricochet
against my ribs
how much longer
can I survive

never offending
never defending
butterflies are making more noise
than I do

Saturday, October 9, 2010

the play dough heart

The other day, Ethan and I decided to play with his play dough...
it had been awhile
but soon the familiar rhythm
of pulling and pushing
tugging and rolling
took over
along with the intoxicating familiar aroma
and the neon colour palette
that shouts "Childhood"  "Fun"  and "Create"

We worked or played
it doesn't matter
side by side,
companionable
with Ethan needing very little help...
he's almost 7 now...
the soft pliable dough squishy and delicious
in our hands

At first we created free form, sculptural shapes
poking and prodding the dough
this way and that...
then Ethan decided we should use the cookie cutters
which was fine
until I was lifting my freshly rolled and pressed
bright turquoise heart
 from the little red heart shaped mold I had used

As a writer and poet
I confess to being thrilled
when I am working
trying to describe something in a fresh, new way
and from my pen
as if by sorcery
flows a particularly dazzling metaphor

and there I was
holding this little heart made of play dough
my heading exploding with this fantastically wild metaphor

I imagined my own heart
inside a play dough can...
had I put it there for safe keeping
during this particularly tumultuous year...

and if I was the one who put it there
why could so many other hands
take it out and touch it...
use my heart for play dough...

This year, one of the strangest
most bewildering and pain filled of my life...
my heart has been rolled over
pushed, squished, pulled,
tugged, torn and pounded...
even cut and twisted...
just like it was made of play dough

and if that wasn't enough
it was left out of the can
to crack, get brittle
and dry up
so it's no longer soft
and resilient

As I was finishing this story
about my peculiar metaphorical journey
I remembered a little verse I wrote
many many years ago
I'm not exactly sure why...
maybe my mind connected the words,
play dough and crayons
but it feels like a good way to end...
 
can we still use crayons
to make our dreams
more beautiful

I believe this...

Tuesday, October 5, 2010

sleepless on the moon

This weekend I was in Palm Desert, California.
We took Ethan there to visit his Grammsy-Papa...

Whenever we have a sleep over,
a pj party, he talks and talks
and then he talks some more
 until finally he drifts off to dreamland...
usually a prearranged destination
where we've planned to meet up
and share a magical, mysterious night time adventure...

I would have liked to join Ethan
 for our dreamland rendezvous
but as usual, sleep did not come
quickly or easily...

At first I was quite content
to watch his sweet face in repose
he looked so peaceful...
sweet and content
amongst his pile of animal friends...

His head was resting on Big Ducky
his suddenly longer limbs blanketed by Lilirosie
and Mischa was just beneath his toes
Besides Gaby, on top of the pillow under Big Ducky,
there was the most important Da and Amigo,
Bruiser Boy and Pancake, the stuffed dogs
 Little Gramma, Little Hempa and Little EJ, the owls,
Prince Snow Jade, his Unicorn and Golden Gamma, his dragon

It was truly a bed made of magic...perfect for dreams...

Why couldn't I lose myself in all that coziness...
The soft rhythm of Ethan's breathing,
the familiar comfort of sleeping poodles' snorts and sighs
I should have been lulled to sleep like a baby
but there I am, restless, achy, a bit melancholy...
my head a bee hive of activity
and now it's 2 o'clock in the morning...
The way my mind was jumping
it could have been 2 o'clock in the afternoon...

Overwhelmed with sleeplessness
I decided to treat myself
to the pleasures of the desert night

Quietly, I opened the door,
stepping out into the courtyard
followed by my three sleepy but nosy poodles

Desert nights are mystical, glorious, sensuous...
 looming large and feeling ancient...
I take a breathe and look up at the sky
and I'm lost in a cavern of midnight blue
stars shimmer and pulse and glow
from every corner, from every angle
high and low, so close...so close...

My only disappointment that there is no moon...

Then a silly little thought flickers by
and I grab it
and it begins to grow
taking on proportions, a sort of life force
of its own

Would I be sleepless on the moon?
Would it matter?

What makes me sleepless here, on earth...
To begin with, I don't know what to begin with...
So, I'm just making a list
and noting that the order could be rearranged
depending on the night in question...

my cluttered mind
headaches
MS pains and aches
stress
worrying aka my cluttered mind
a frayed heart

I imagine myself floating on the moon
would I be sleepless...
would it matter...

Monday, September 27, 2010

I believe...

Before I move on, at least for now, from the topic of believing
I would like to share a list that I've accumulated over the years
of things that I believe in...

My focus might be different
if I were to write this list today
but from time to time
I like to go back
and read my list
 of I believes
and reflect...

I believe in the comfort of the familiar
and the allure of the strange.

I believe that bullshit has become an art form.

I believe that the Bronte sisters and Emily Dickinson would be feminists now.

I believe in the magic of live performance.

I believe that my children are the best part of me.

I believe that each person must believe in them self.

I believe that flirting is a lost art.

I want to believe in the moment.

I believe in pumpkins.

I believe in bubbles.

I believe that we don't need to be heroes but that we do need to be humane.

I believe in baby powder for women.

I believe that one morning I will open my mouth and out will come Barbra Streisand's voice...
even just that one morning will be okay...

I believe in sending valentines to friends as well as to lovers.

I believe that censorship is dangerous.

I believe that when I am an old lady I will finally say whatever I want.

I believe that I was the best possible me when I taught nursery school.

I believe that it's more fun to dress up and get ready for most parties
than it is to actually go.

I believe that I make great spaghetti sauce.

I believe that I am a magician with chocolate.

I believe that there are people who were rotten parents
 but make fabulous grandparents.

I believe that women should be free to choose what happens to our bodies.

I believe in destiny and past lives.

I believe in puppy kisses.

I believe that you're never too grown up
to want your parents approval and praise.

I believe that everything happens for a reason
even if we cannot understand what the reason is
at the time.

I believe in tears.

I believe that one day Scotty could beam me up!

I believe that one day I will reach up
to brush the hair out of Robert Redford's eyes...
just like that scene in the Way We Were...
I said that I've had this list for a long long time

I believe that you can wait forever
but nothing will happen until you open the door
and step out into the street.

I believe that two interlocking halves
do not always make a perfect whole.

I believe that your children need to learn
for themselves all the lessons you'd like to give
them a list of...

I believe that we can be our own guardian angels.

I believe that sometimes I experience moments
of perfect clarity...only to have those moments
float away like little dreams.

I believe that everyone needs to eat a meal
without saying the words guilt, exercise or
grams of fat...

I believe that tears are the best cleansing milk.

I believe that most women are more like their mothers
than they would like to be...

I believe that grandparents can make a difference.

I believe that pets are family members with rights
like everyone else.

I believe that ice cream is the perfect breakfast food...
it tastes terrific before and after
you brush your teeth.

I believe in old fashioned nursery rhymes.

I believe that a journal or diary is a great gift
for anyone at any age.

I believe in the magic of band aids.

I believe that you should give someone flowers
on the first day of spring.

I believe that children should be taught
how to grow things from seeds.

I believe that everything matters
nothing matters very much...

I believe that I was touched by the moon...
and that you can wish on stars...

I believe that the most precious gift I ever received
was my grandson, Ethan, my Pumpkin Boy...

I believe that having my believing list
has helped me to know myself...

Please share with me some of the things on yours...

Thursday, September 23, 2010

believing

For the past nine years
three times a year
I light memorial candles for my dearest friend, Sheila...

Her sudden death was not only deeply painful
but it has challenged me
beyond anything I could ever have imagined

I light my candles at sundown
and they usually burn brightly for 24 hours
flickering away as the sun sets
the next day

The first candle I lit for Sheila
was on the first anniversary of her death...
My husband, David, and I were in Puerto Vallarta
celebrating our anniversary
and trying to escape briefly
from a horrendous situation
not of our own making...
and I was missing Sheila so much
I wasn't even sure I wanted to go away...

I had bought the candle several weeks in advance...
I didn't want to forget about it
with all the hassles of packing,
my insecurities about being gone
and leaving a house full of poodles for a week

As I lit that first candle,
 I knew that I was following an ancient tradition
though Sheila and I did not share the same religious background...
I was simply listening to my heart...
and to me
that is what ancient tradition is about

What I did not know
and could not know,
that beautiful lavender and gold and pink sundown
in Puerto Vallarta,
 I was beginning a new tradition,
a tradition beyond my control

That simple little candle
did not burn for 24 hours
the way it was intended to do...
its' flame illuminated my life
for almost 3 full days
and when it finally flickered away...
I cried...

My eyes filled with giant joyful tears
that dripped down over my face...
tears that cleansed me,
 soothed me and calmed me 

 I would like to say that
I felt Sheila's firm, gentle fingers
wiping away those tears
or heard her whisper, "hush..."
but neither of those things happened...
What did happen was this;
I smelled Sheila's very special and distinctive perfume...

I have been lighting those same candles
for nine years now
three times each year
and those little candles
and my sweet Sheila
never disappointment me

Sheila's candles always linger
beyond the 24 hours
and I refuse to believe anything
except that it is Sheila's way
of saying, "I'm still with you..."

Who are we if we cannot believe something so wondrous...

Sunday, September 19, 2010

midnight

It's almost midnight
I lean back and close my eyes
but sleep is far from my thoughts
All I want to do
 is let the lushness of the hour
seep under my skin
and soak through my nightgown
like a sudden summer storm
leaving me damp and trembling
with all the possibilities of the night ahead

Yes, I am tired
Yes, I should try and sleep
but the day is finally and completely over
and all the hours between now
and morning
 belong only to me

Everything that could have happened has...
and I can't do anything else
to fix the hassles,
the problems and complaints
 of the day

I've taken all the pills
that are supposed to soothe
all of my pains
and
I gave myself another shot
to end another day

I learned a long long time ago
when I go to sleep too early
the night is endless...
like a nightmare I can't escape

Since childhood expectations of midnight
have spun around in our heads
conjuring dreams and magic and anything unknown

I have learned to love these still dark hours
waiting predictably before me
after every day,
the good ones
and the not so terrific

I allow myself to be enveloped
in the silvery glow of moonlight
 the magic that stirs the air
and suddenly I'm relaxed

My mind opens
my creativity feels powerful
I cast away my doubts, my fears
thinking only of possibilities
and purpose
there is no one around to say "can't or NO!"

Midnight is the little gift
I give myself each day...

Tuesday, September 14, 2010

the escape artist

Having a chronic illness like MS means that you
and your MS are companions for life...
it isn't going anywhere soon...
so you need to find a way to coexist...

I looked up chronic in my Synonym Finder
and some of my favourite interchangeable words are;
settled, ingrained, persistent, constant, enduring
and if you would like to be a little fancier
there is always lingering, perpetual, never ending,
eternal, incessant and unmitigated...
It's amazing how many interesting ways
there are to say make yourself comfortable...
you might not like it
but it's a waste of time and energy if you don't...

That said, no matter how adjusted I think I am,
there are moments that surprise me.
Suddenly, I'm enveloped in a haze of free floating anxiety...
I'm edgy, or listless, unusually sleepy or weepy...
I feel as though I'm at the edge of place,
not knowing which direction to turn...
I can't express myself the way I would like to
and I feel like I'm reaching for memories or words
that should be there if only I knew how to grab them
and hold on tightly enough.

After all these years I should finally realize
that chronic illness often brings these
little spells of depression...
but of course, being only human,
I don't realize it until after it's set in for awhile...
and by then I'm in deep enough
that I need to work my way out...

Enter the escape artist...

Each day at dusk I study the sky
I measure the colours as they move
and change like my own personal kaleidoscope
I ponder the last intrusion of the clouds
and greedily anticipate the arrival of the moon
and the possibility of stars

The rhythm of the moon
stirs within me like feathers
and I am smitten

I wonder if I could ever paint the sky
that unfolds before me
it's a richly hued ancient tapestry
so old that it should crumble
Chinese lacquer blue, royal purple, sooty black
streaks of molten gold and whispers of silver...

...and into the sky
I escape...

Saturday, September 11, 2010

Russian Roulette and the Beast

Before I disappoint anyone
this is not a story about the mob...
it's just a little tale about MS
although when you think about it
MS often behaves exactly like the mafia...

Destructive, a thief, a bully...
even ruffing you up
for money
and leaving you
 alone with pain
wondering what's next

I used to think of my MS
like a game of Russian roulette
I'd wake up each morning
never knowing what to expect
I tried to remember that everyone loves surprises

and maybe some people don't

Enter the Beast...
the Beast is new in town this summer
started lurking in the shadows
a summer or two ago
but I wasn't paying enough attention
maybe I sensed a strange new presence
just couldn't be bothered
or didn't want to be
Now this intruder is glaring into my eyes

Like anyone who wants to make an impression
the Beast came bearing gifts...
fire boots of such enormous power
that I could launch myself skyward
when they begin to glow
and for my hands
the Beast has brought me gloves
that tingle and won't allow me to hold onto things
and when this game is over
my hands simply fall asleep

The Beast does not understand
how all this magic
can make me cry
and why I refuse
to let a Beast get comfortable
in my house

Thursday, September 9, 2010

sweet warnings

It was a rare friend who first told me about sweet warnings.

Not long after my husband bought me my walking stick,
when I was still not very used to taking it with me
and also a bit shy about having it at all,
I had lunch with some friends after our writing group.

We decided, because of parking issues, to take one car
to the restaurant. After a leisurely, noisy continuation
of our group (only with food) we left the restaurant
and went back to pick up our own cars.

As we were saying our goodbyes
this special friend who never misses a trick
inquired, "didn't you have your walking stick
at the restaurant?"

 I began to get panicky
maybe I was feeling foolish
maybe a little guilty
 because my husband had gone out of his way
 to find me a really beautiful walking stick
for the times when I needed it
and I was wondering if my subconscious
was playing silly games with me

Had I left the walking stick accidentally...on purpose...

My sweet friend offered to dash back to the restaurant
and get my walking stick...
she could obviously see that for the moment
I probably should not be driving off anywhere
in a hurry or other wise...
Another friend offered to wait with me...

As she was getting into her car
she said, "it's probably just a sweet warning..."

In what usually would have felt like forever
she returned waving my walking stick
like a magic wand

"Thank You," I hugged her,
"but what is a sweet warning?"
I had spent the whole time,
probably fifteen minutes,
that she was gone
wondering...

Sweet warnings are the little things that happen
to save us from the big things that might have happened
they remind us to be careful, be patient,
to appreciate things, to slow down, to savour, to breathe

Sweet warnings also teach us 
that mistakes are OK
when we learn from them
we're not perfect
we're human

This very unusual lady has taught me many things...
One more that I would like to share now
is how she showed me to write my poems backwards...
If you think about it...
looking at the same thing from a different direction
is often a sweet warning too...

                                     Random Chances

If I were a cat
I'd have nine chances
Choices perch upon my shoulders like sparrows
I could buy a pair of scissors
if I had the exact change
He bought me perfume
when I wanted flowers

When I wanted flowers
he bought me perfume
If I had the exact change
I could buy a pair of scissors
Like sparrows choices perch upon my shoulders
I'd have nine chances
if I were a cat


ps this one is for you sweet pea...

Tuesday, September 7, 2010

free choice

Recently, I've noticed several people with prescriptions easily as compelling as some of mine, drinking wine or cocktails.  Anyone who knows me can tell you that I don't drink.  I never really did...but why would I mix alcohol and pills?  I don't need the warning label on the bottle to remind me that it's just not a good choice.

Baffled as I was by this, when I thought about the people I saw making this choice, the issue became more perplexing.  These were smart, savvy, usually responsible people.  I'm trying not to be judgmental but I just cannot understand this kind of free choice

The more I ponder this conundrum, the more bewildered I am...
I believe in free choice
I support it
I trust it
I have faith in free choice
I depend on it
I would blow up balloons and wave banners
and throw a parade for free choice...

But how is it possible to choose sitting on your hands and doing nothing
when someone you care about chooses to do something that truly scares you...

Monday, September 6, 2010

the dreamer

I wanted to live my life as I dreamed it...
the words were magical, ethereal...brilliant...

I lost myself in stories
 believing if I was a good girl
dreams do come true...

I drank my milk
I actually liked green vegetables
and I tried really really hard
never to call someone a bad name
or reveal a secret I was told

I had my matters of principle
elastic as they might be
from a very young age

It never occured to me
that the way other people
played with the rules
could alter my dreams
shattering my destiny
as I imagined it
with only a sleight of hand

I needed to be crazy then
it would have been a comfort
as the lies pursued me
to allow myself that measure of luxury
did I dare pretend

I could shelter myself
in a small cottage
by the sea
enjoying the monotony of gulls
the contradiction of the waves

the gulls would be charmed
when I wore lipstick
and I would read to them
from a volume of e.e. cummings

I would pace the sand
like a soldier
until I forgot myself
opening my mouth
to taste the pungent air
you could travel to China
on the taste of that air

when we're younger
days stretch out limitless
daring us to squander time
and what is more thrilling,
electrifying, meaningful and potent
than our own personal dramas

this summer I've been trapped
in a regretful, anguishing, fabricated
dangerous drama
of someone else's imaging

I don't sleep and when I do
both my pillow and
my sweet Lilirosie's head are damp
from my tears
and my MS,
well I am high voltage
generating enough buzzing
that I could power a small town
in a black out

I still wish I could live my life as I dreamed it
but a long time ago
I  read something a bit more practical

Everything matters
Nothing matters very much

Thursday, September 2, 2010

anniversaries

Today is my 38th wedding anniversary.
Tomorrow is the 9th anniversary of the untimely death
 of my dearest friend, my sweet Sheila.

I looked up the word anniversary
in my Synonym Finder
trying to find another sentiment
that might better express how I was feeling
and among the other words I could choose
it said red letter day...

So I am pondering
what is a red letter day...

Red is such an unpredictable colour...
there is nothing plain about red
red words are exotic...
try rolling them around in your mouth,
cinnabar, garnet, carnelian...
now taste a few...
red words are quite delicious...
cherry, raspberry, watermelon, pomegranate...
and take a risk with those spicy red words
cayenne, chili, paprika...
you can rouge your cheeks red
and stain your lips berry
hypnotize yourself with the glow of red wine

make any day extraordinary
dress it up, give it pizazz,
sparkle, some sass
make it red letter
speak only red words
CELEBRATE!

Isn't that exactly what an anniversary is...
a celebration...

ps as I finish writing this I'm blowing a big lipstick red kiss skyward
    and saving one for later to kiss my love, my david j. good night

Wednesday, September 1, 2010

funny bunnies

most people
are as prosaic
and predictable
as rabbits

complacent in their little hutches
satisfied with the intermittent carrot
elevated by the luxury of some time
on cool green grass

these rabbits,
the bunnies
are indubitably pleasant to cuddle
stroking their glossy fur is certainly agreeable
and popular

but some rabbits
want more
than to live like bunnies

a few monotonous days
behind the hutch door
and there they are
waiting for an opportunity
to skitter off
into the trees
beyond

it's been an endless summer
not something that someone my age
says very often

it's been sad, sleepless, angry, achy,
weepy, toxic, stressful, soul searching
heart tearing, head pounding
barely breathing, MS ruling...
these are not words anyone would
associate with summer...
but this has been summer...
my summer

I think I need to stop waiting
for the opportunity
and skitter off
into the trees
beyond

Monday, August 30, 2010

death trumps anger

I think my Winged Liver Goddess is working her magic...
When I heard about my dear Ronald's death
the anger swirling, tumbling, tossing and rumbling
within the depths of my liver
came together like an enormous storm cloud
pouring out thru my eyes
cleansing me in my own tears

As I cried enough tears
to make a sauce for my sorrow
I knew that I would be different
feel different
the anger had lost the potency
to harm me
it no longer burned deep inside
I felt as if my anger was floating above me
I could grab onto it
if I felt the need
but I did not want
the ugliness of anger
intruding on my sweet sadness

death trumps anger...

Wednesday, August 25, 2010

one can bear grief but it takes two to be glad

I'll never hear the rich chocolate velvet sound of his voice again
We won't go to the ballet or the theatre or an art exhibit together
or share a meal, simple or special
I can't bake him lemon bars anymore...
There will be no talk of that trip to Italy
we might finally take someday
at least I've been to Italy
it was always one of his dreams to go...to Italy...
I can imagine him there...
How dashing he would have looked
riding in a gondola as it skimmed along the water of the Grand Canal...
Sometimes I have pictured him sitting,
a Great and Noble Knight at King Arthur's Round Table
He was the kind of friend who would have slayed a dragon
if I asked...
and his bear hugs were the best!

Yesterday, one of the people I love most in the world died...
it was not unexpected...

As I sit here writing this
all the comforting cliches
that flood my thoughts
seem meaningless
ridiculous, useless...
but I am wondering...
does grief that is all at once
so numbing and yet, so fierce
can this grief be so powerful
that it actually shrinks your heart...

ps I love you Ronald...always

Sunday, August 22, 2010

Homage to the Liver

If I had to choose a word to describe this year
it would be wretched...
I don't want to sit here on the pity pot
telling you all the horrible things
that have happened to me
there are too many people
experiencing their own unbelievable realities
as I'm writing this...
I simply would like to tell you a story...

I am a person who is easily saddened
anger is not a frequent guest in my vocabulary

This year I have found myself
filling up almost daily
on enormous portions of anger
I ache with it, cry from it
 squirm, stew, tremble
 and swell up from it
there have been days
when the anger is like a fire
burning brighter than all the rest of me...

Since I was a little girl
I have been more afraid of anger
than I am of the dark

I was telling a dear friend
who is wise in the ways of healing
about my fears
and she told me:
that in Chinese Medicine, the liver is the body's center of anger

I had never thought much about my liver before
but as I fell asleep that night
I couldn't stop obsessing
about the damage
I must have done to my poor little liver
these past months

Then in my dreams
my liver had wings that shimmered
she was like some great warrior goddess
roaming the world
battling injustice
she seemed to be floating passed me
on a body like Winged Victory

Tiny liver warriors
wearing roman sandals
on their pudgy feet
followed behind her
conquering all
that stood in their way

Had Fellini invaded my dreams?

I awakened quite normally
to that glowing hour
somewhere between morning and night
bringing with me
 that image of my little winged victory
like a talisman
against anger

ps next time you find yourself growing angry...
     think about your liver

Friday, August 20, 2010

mirror mirror

It's funny how we look in the mirror
 and see what we want to see

I am someone
who almost unwaveringly
sees her same self...
the girl, the woman
she's just always been there
it's not that I have any fantasies
about being younger than I actually am...
this is simply the person
I am...
being and becoming...
never all that different...

When I try to look inside myself
for answers, challenges, change...
that's quite a different matter...
 I never know who I'll find waiting...

This summer Ethan is obsessed with wizards...
 all wizards need magical animal helpers...
I got him a tiny stuffed spotted owl
 he calls her, "Little Gramma"...
Of course, Little Gramma is extremely wise...

I know with loving pride
 and a few tears
that this is his reflection of feelings
for Big Gramma...
but when I look in the mirror
or within myself
wisdom, especially owl wisdom...
is not what I am seeing...

I am a wiser woman
than my younger self...
but my wisdom grew mostly from sorrow
I did not learn it
the way I imagined I would
it doesn't feel earned...
it doesn't seem tangible

If I keep hanging out
with the Wizard, Ethan Starsword
and his owl, Little Gramma
I can look in the mirror
and never doubt
that what I will see is love

Monday, August 16, 2010

wavering light

I am afraid of matches
I keep my childhood dimly lit
I wanted to give my children something bright
I imagine being fearless,
lighting one thousand candles
Why couldn't I blow out candles
or eat cake on my last birthday
I wonder, do wax and ice cream melt at the same speed
I can assure you, we all have wicks
but some of us won't admit it
I believe more people should be afraid of matches
In the opaque light of dreaming,
I see a day when he wants to kiss me
and my cheek is no longer soft or warm
though my perfume will be the same
hanging in the air around me
like a frame
If I light a candle as I pray
will my prayers have more resonance
I remember candlelight more blinding than sunlight
I am searching for the Sabbaths of unlit candles
I have been told the guests at a candle lit table
are more expectant
This is something I understand

Each night
 before I go to sleep
 I injection myself with Copaxone...
it has become a habit
 it is not really difficult to do
 Each night
I become reflective
as I open the sterilized wipe
then the prepackaged syringe
swab my skin
and push the needle into me
Each night
 for just one tiny moment
I allow my self to whisper...
"I never imagined myself doing this..."

Friday, August 13, 2010

the invisible gramma

One day when Ethan was about three and a half
 he asked me why he could not see my MS...
I told him it was because I have invisible MS...
after a very animated display of face twisting
 and wrinkling and squishing
his eyes grew wide
 and he looked like he might cry...
before I could ask him if something was wrong
he blurted,"Gramma, is the MS going to make you invisible?"

I snatched him up into my arms
kissing his little head
inhaling the sweet smell of baby shampoo
as I assured him that,
"no, the MS will not make Gramma invisible."

Before I finish my story about Ethan
I'm going to tell you a different story

I do have invisible or exacerbating and remitting MS
which means that major flare ups come and go
inexplicably, at will...

A very long time ago
I was having one of these major flare ups
I could not see out of my right eye.

This had happened to me once before
and I was given steroids
which did bring back the sight
in my eye...

This particular kind of visual loss
is caused by a swelling
of the optic nerve...
It was not that my vision
was completely gone
it was more like I was trying
to see thru the thickest,
deepest, whitest clouds imaginable
and the clouds just would not move

 The steroids worked
but taking them was a bittersweet experience...
Every side effect
that my doctor even whispered
seemed to occur
I later learned
that the swelling probably
would have gone down on its own
but it would have taken alot more time...

Now the same thing was happening
all over again...
 I wasn't anxious to take the steroids...
I decided to try
the be patient
 letting the swelling go down
 on its own approach...
and I wasn't quite as scared
as I was when this happened the first time...

My doctor gave me an eye patch
to wear under my glasses.
This would allow my eye to rest
and I would not strain it
while constantly trying to see.

 Curious things happen
when you're wearing an eye patch.
Strangers approach you demanding explanations...
and people that you know
cannot bare to look you in the eye...

The eye patch was my first real lesson
about invisible MS...
it can make you invisible
but that's only
if you choose to let it...

Ethan has several age appropriate books
about the human body
in his book basket.
They don't tell you about MS
but they do a great job
explaining what nerves are
and how they work.

And, of course, my being a talented teller
of deliciously embellished stories
about how useful and exciting it can be
to have a Gramma
who can sometimes
 have invisibility powers...

you can just imagine the rest...

Sunday, August 8, 2010

twinkle toes and icy bones

Yesterday morning about 4:30 my toes
 were buzzing so intensely
 and I awoke so suddenly
 that it took me a few moments
 to remember where I was...

I glanced under the comforter to find
my right foot perpendicular to the sheet
 my left foot leaning on top of it
as if trying to hold it down
my feet were perfectly still
but inside of them
it was as if I had invited
 a company of hummingbirds to perform

Lilirosie, my red poodle, snuggled closer and sighed
she certainly wasn't ready to wake up yet
and she hoped that I wasn't either
I closed my eyes
letting the peaceful rhythm of Lili's breathing
carry me back to sleep

About an hour later I was treated
to an encore of the hummingbird ballet
and so it went..
until I finally dragged myself out of bed about 8
retreating to the family room couch
hoping that a change of location would help...

At 8:30 when my left eye began to twitch
a little tune of it's own
I looked out the french doors
to see a thick gray blanket
of marine mist hovering low
in the backyard

By 9 I knew that I should get my ice bag
and just take the migraine pill

Lily and I curled back up together
on the family room couch
joined now by my two other poodles,
Mischa and Gaby
and we all fell fast asleep...

A few hours later
when I finally lifted my head
it actually seemed a little better!
But as I started to get up
I was joined by my friend
and after migraine meds visitor,
Icy Bones...my own extra skeleton!

Although I much prefer icy bones to a migraine
I can't not marvel at the strange
and illusive feeling
that I have a double skeleton!
Icy Bones seems to be floating
above me... the eerie sensation
lasting for most of the day...

So I spent my day
with two skeletons
that danced
on hummingbird toes
and though I couldn't make a video
for YouTube
I could tell Ethan
a great story
about his Gramma's
twinkle toes and icy bones
instead of just saying
that Gramma's not feeling good...
again today...

Thursday, August 5, 2010

the summertime exacerbation blues

This may sound a bit strange but my particular MS has always been as vocal as it is sensory...

Before I explain this, I'd like to tell you a story.

About fifteen years ago I was seeing a neurologist at UCLA that I liked very much.
 His name was Dr Louis Rosner.
 One of my favorite things about Dr Rosner was how sensitive he was
 to all the little things, the almost insignificant things
 that doctors refer to as baseline symptoms.
In a nutshell, baseline symptoms are the MS equivalent
 of fingernails on a chalk board
 only they're inside your body...running amok...

Since Dr Rosner knew that I was a writer,
each time I visited him
 he would ask me for new
 and varied descriptions of my baseline symptoms.
  It became a little game between us
 that often lightened the mood of my appointments.

One day Dr Rosner asked me if I would be so kind
 as to join him the following month
 at an informal doctor/teaching noon lunch
 and share some of my most creative descriptions with the other neurologists.
 He would be presenting a paper he was working on
 about the importance of baseline symptoms
and patient care.
 He was so enthusiastic about having me there
 to offer patient input
 in my particularly colourful style
 that I just couldn't refuse...

The day I was supposed to speak with the neurologists arrived all too soon...
Dr Rosner told me I did not need to prepare a speech
that all I had to do was start talking and describing
and the doctors would, of course, ask some questions
and that would be that...
He was so sure that my fresh take on baseline symptoms would
 charm the stethoscopes from around their necks...

 I described to those neurologists exactly
how sometimes my hands, legs and feet began to buzz so intensely
that it felt like someone had knocked over a bee hive
and I'd been invaded
or that it could resonate so deeply and loudly
that one of those hard hat guys drilling in the street
was drilling inside of me

and before I could get to some of my more poetic metaphors
a couple of bad mannered residents began to sarcastically mock me
for using auditory instead of sensory words
to describe my symptoms

"Excuse me," I said, "when you are trying to describe the indescribable
 to someone who has never experienced something...
 you use the words that work! 
You want to be understood,
 not given a prize for knowing the difference
 between auditory and sensory perceptions."

When I saw Dr Rosner later, he assured me that I had been terrific...
He would be presenting his paper at a big neurology conference that summer...
and many of his best examples came from me.
He thanked me for my help...
and I thanked him for caring about all those little things...

Now back to those summertime exacerbation blues of mine...

all summer long my MS, actually, my nerves, sing to me...
they buzz, they hum, they screech and they scream
they are shrill and loud and piercing
but sometimes they feel more like the blues
-mara

Sunday, August 1, 2010

Ethan and me

I know that all grandparents think that their grandchildren are unique and special.  They should...
Ethan is even more than that to me...he is the magic in my life...he is my heart...

When he makes his star light, star bright wish the nights that we spend together
 and urges me to make one of my own
 I say, "only a small one, Pumpkin Boy..."
Of course, after all our years of wishing together
 he knows precisely why I only allow myself these tiny wishes...
but children love to hear the same stories over and over again
especially when the story is about them! 

And so I tell him my tale that before he was born I would say,
star light
star bright
first star I see tonight
I wish I may
I wish I might
have the wish
I wish tonight
And then he always says, "what did you wish for Gramma?"
And I say, "I wished for You, Pumpkin Boy!
 So now I don't want to be greedy..."

Ethan has known about my MS since he was 2...
at first he understood that Gramma got very tired
 but so did he and we both took a nap.
 He saw me swallowing pills
and though I was very very careful he knew to never ever touch pills.
 Once he said he might like to take pills when he got big...I almost cried...
Instead I told him that I hoped he wouldn't need to take pills but sometimes it's necessary...
I only take the pills that my doctor says are really important for people with MS...
especially Grammas...
"We both need to be strong and healthy so we can always have lots of fun together," I told him...

He told me not to worry because he could give me extra kisses for energy...

I would love to tell you more stories about Ethan but only one more thing tonight...
Now that he is older, Ethan likes to tell people that his Gramma has Ms...

And then he announces rather seriously, "that it can never ever go away."
I've thought about this carefully, and it's almost as if he has given me this odd super power
or a badge of honour...
-mara

Saturday, July 31, 2010

a different ms day

I did wake up and go to Pilate's class on Thursday and I probably tried even harder than usual...that's human nature, that's me...
I went for a short visit with my daughter in the afternoon...my husband drove even though she lives only five minutes away...
and when we came home I napped with my pile of poodles.

My night was long, as usual...but I was focused on the next day and didn't let myself care...
My six year old grandson, Ethan, was coming to spend the day and the night, and that was all that really mattered to me.
Anything MS and being Tired would still be there like laundry or dirty dishes on Saturday when Ethan went home.

When my kids were little I would send them off to school every morning saying,
 "have a great day, be the best You can be!"
Well, when I'm with Ethan, all I want to do is be the best Gramma I can be...

Even though I had a nap, I'm really really tired now...
Ethan and I both had a great day
 and night
 and I think, together, we were the Best we could be...
so, sweet dreams for now and I'll tell you what we did...
 maybe... tomorrow...
good night...
-mara

Wednesday, July 28, 2010

another day with ms

Firstly, I'm choosing not to capitalize ms because I don't want to give it any more status or weight than usual.
It's just another day and I decided a long time ago that no day was all good or all bad with or without ms...

After a Very Long Night of waking Up almost every hour for a pill, my ice bag, to shift my body or go use the bathroom...
When morning finally came all I wanted to do was Sleep! 

My headache was priority which means that how I respond to my meds will shape my day...
at the absolute best my headache subsides, I'm a little tired, maybe dizzyish and I feel like I have a skeleton that floats above me made of icy bones.

Well, I swallowed the pill, moved from my bed to the family room couch followed by my three little poodles, also exhausted from sharing another night's ups and downs.

I fell back to sleep in a pile of poodles and woke with a start a few hours later...
By now I knew that this was going to be another day with ms...

I was glad that my writing group was on hiatus this month.  I was sorry that I wouldn't be pruning my roses and tying my tomatoes as I had thought last night before sleep eluded me.  My fingers and arms were tingling
too much to draw or paint and if I tried to finish the book I was reading my now low grade headache might come back...I was even too tired to chat on the phone!

I flipped on the TV for a little background noise, sometimes I just like hearing the voices and closed my eyes...
I dozed on and off most of the afternoon...
Finally, at about five I got up and took a shower, brushed my teeth and sprayed myself with a little of my Shalimar...
My husband had already planned a seafood salad for dinner but I managed to throw together a fruit crumble from the berries, cherries, apricots and white peaches he bought at the farm stand...
Remember, no day is all good or all bad...

Tomorrow I plan to wake up and go to my Pilate's class.  It's a different day and I have muscle memory to think about...

Monday, July 26, 2010

Pushing Buttons

This summer my perceptions about living with a disability have shifted yet again. This world that I thought I knew so intimately has turned upside down. All of my tender buttons have been pushed…


My beautiful, amazing thirty four year old daughter was just diagnosed with systemic lupus. So now, as her mom, I feel very small and quite powerless.

The relationship I have with my daughter has always been grounded by unwavering love. Comparing the symptoms of our autoimmune disabilities is not what I imagined when I held my precocious baby girl in my arms so long ago.

We have begun to discuss the FEARS of not knowing what lies ahead; the HORRORS of trying to adjust to medicine; and that now, after almost ONE YEAR of waiting for a PROPER DIAGNOSIS, having one is actually a RELIEF…

As we talk, the lines between us become blurred...

This emotion doesn't feel very motherly to me. I try not to feel guilty about genetics and DNA and whatever part that may have played, but feeling guilty does feel motherly to me

I was always like the mother bird that pushed her baby birds out of the nest so that they would learn to fly. In my heart, I know that my daughter can and will continue to fly high. I just have to remember that before anything else, I am her mom and must let her…

-mara

Monday, July 19, 2010

getting in touch with butterflies

hi...i'm working with the web people to keep things as simple as possible so if you'd like to email me about a future blog topic, the website, etc just click on the butterfly...
by the way, the butterfly is a collaborative effort of my six year old grandson, ethan and i...
last summer we started drawing sketchbooks full of butterflies and this year we added dragonflies.
one of the future blogs i'm working on is about being a 'disabled' gramma...

Friday, July 16, 2010

comments

to get in touch, just click on the word comments below the blog entry...
hope to hear from you soon
sweet dreams

Thursday, July 15, 2010

reflections

hi...
this is all very new and a little intimidating but I think the best way to get used to it is to just start writing...
even when I don't have something specific to discuss.  I do want to point out a special feature that the blog offers called pages.  I've chosen to use this as a personal notebook or companion to the actual blog.  I call these pages reflections.  You can look at this by clicking on the word reflections on the right side of the blog just above the butterfly.

Wednesday, July 14, 2010

hi

   If you've read our story you already know I have MS.  While that is major, there is so much more to who I am.  There is no denying that the MS is integral but it doesn't define me.  I am a wife, a mother, a gramma;
a writer, an artist, a former teacher.  I am a baker, a gardener, a reader, a dreamer, a friend.  And I am a woman who has a disability.  I have MS.
   To be honest, there are days when I feel like all I am is a woman with MS.  It grabs me from the inside and holds on so tight that it overwhelms me.  I feel tired and I don't want to face the day.  My positive identities disappear.  It's a complex relationship.
   When David began researching the website, I knew that I wanted to make a contribution.  As Disabled Discounts comes together, state by state, I'd like to create a space where disabled people and their caregivers share their thoughts and feelings, a place to talk about our concerns and feel supported by the strength of a community who understands us as individuals.