Sunday, November 20, 2011

the belle of the ball

My eyes snapped open...
Lilirosie grumbled softly...
She was pressed contentedly against me
and I was disturbing her
as I twisted around to look at the clock...
2 o'clock in the morning...
I had turned my beside light off
barely an hour ago...

Something had startled me awake...
I'm not the soundest
or the deepest sleeper
but this seemed to be a new record...

I struggled to adjust the comforter...
it felt heavy and weighted down...
I was trapped!
I peered into the darkness...

Pinned beneath the comforter
it was impossible to reach over
and turn on my lamp...
My eyes were slowly beginning
to adapt to the blackness
that seemed to be swirling around me...
Maybe I was dreaming...

Again I tried to wriggle free
of my comforter...
Failure...
Do I scream
and wake up David?

Then, like crystal,
everything became clear...

There they all sat...
the nerve...
at the foot of my bed...
The jester, the night crawler,
long and lean and that one with the short stubby fingers...

And they were arguing...

The jester had popped in
to pull my legs
around the bed...
only to be met by long and lean
who was waiting
to dance me through the hours until dawn
with a spectacular headache...

The night crawler, as always, was in hot pursuit
of the jester...
These other offers paled, he said...
when he wanted to show me
the mysteries and the magic of each hour
before the sun rose...

The one with those short stubby fingers could not really compete...
All he wanted to do
was poke me in the eye...
His headache wasn't as elegant
as long and leans...
and his tricks did not have that sophistication
of the jesters...
He was just an ordinary pesty kind of guy...

There they all sat...
at the foot of my bed...
It was 2 o'clock in the morning...
I should have felt like the belle of the ball...

The only guy I wanted to see
was Mr. Sandman...

Thursday, October 13, 2011

if you're going to be buzzing...

When I woke up Monday morning
that long lean headache was lounging
at the foot of the bed...
daring me to get up
and start dancing...

Hadn't he had enough...
pulling me around the floor
til almost dawn...

Now another day would begin with extra meds...
Thanks for the dance, long and lean...

Sometimes my medication makes me very quiet...
Sometimes my medication makes me speak very very very fast...
in long loopy run on sentences...
the kind they warn you about in school...
the kind that no one can follow...

Sometimes MS makes my cognitive skills scramble...
And yes, getting older does it too!
but it's not quite the same...
and I can't exactly explain it...

The headaches and the migraine medication also
have a strange effect on my cognitive skills...
and it varies from headache to headache...

I've talked about my other skeleton...
those icy bones that seem to float away from my body...
after taking a migraine pill...

Often the same thing will happen
to my thoughts and words...
I'm trying to use them,
to speak them or write them...
and there they go...
floating off like bubbles
evaporating like mist...

Desperately, sometimes tearfully,
I try to catch them...
grab them, hold on as tightly as I can...
but it's an impossible task...
Either the headache
or the medication always wins...

As my day went by on Monday
I remembered that I had finally
written this blog the night before...

It had been looming there...
making me sad and wistful...
wishing for the simple joy
I get from putting words together,
for too long...

But I had done it...

I went to the computer to read it...
Trying not to be the critical writer
I decided to feel satisfied instead...

It's Thursday now...
I've had more headaches...
I've needed to take more meds...

And then there's all the usual MS stuff...
especially all that buzzing and humming
my body does to keep me entertained
and on my toes...

I do not take this lightly
but after all these years 
of buzzing and humming along everyday
you need a sense of humour
so for me it's playing with the words
I use to describe it...

So, it's Thursday...
and I realized when I woke up this morning
that I had been buzzing a bit more this week...

Not buzzing as usual...
but I have this buzz...

It came from
that simple joy and pleasure
I got Sunday night
when I grabbed a few words out of the air
as they floated by
and made them my own
in my own little space...
and actually pushed the publish post button
by choice...

You will just have to wait awhile for that dance,
long and lean...
I'm busy buzzing...

Sunday, October 9, 2011

the dance card

Since I was a little girl
who began wearing glasses
somewhere around age 7...
I have been a headache person...

When I was 17
and studying for a final exam
about the Russian novel, Dr Zhivago,
I was suddenly thrown into my very own
Russian Novel...

For three long intense days
I suffered with the migraine
of my life...

Until...

The friendly neighborhood doctor
around the corner suggested...
that it might be my appendix...

I have no recollection
of how that actually happened...
All I remember is that my head was ready to blast open...
and I had missed my Dr Zhivago final...

But I ended up with an an appendix
ready to burst...
and eventually, after surgery,
my headache was gone...

For the last three months or so
I have been living in a headache cycle...

From morning to afternoon
and on into the evening
I am waltzing in and out of the arms
of a variety of headaches,
some quite large...
and others, small but still annoying...

I can't recall my dance card
ever being so full...
though I know that it has...

I wish they would all disappear...
these disagreeable partners
that want to dance
and fill my head with frivolity
when all I want to do is get on with my day...

I find the long lean ones particularly displeasing...
they make it a habit to linger through the evening
and then there they are...
Waiting...the minute I open my eyes...
ready to start dancing again...

I don't like the ones with those short stubby fingers either...
they poke me right behind the eye
and they keep poking
until they have my undivided attention...
What kind of way is that to woo a girl
into dancing...

Eventually, this music will end...
and I will tear up this dance card...
I'm depending on it...

And I have an appointment
at my neurologist the end of the month...

Sunday, September 11, 2011

What If...

As I have said before...
this is a personal blog...
and I try to avoid politics...

However, today I would like
to make a small exception...

I am a sixties girl
from the top of my redhead
to the tip of my buzzing toes...

I still have my
"War is unhealthy
for children
 and other living things"
medallion...

As far as I know,
they are not making the bumper stickers
any longer...
or there would be one on my car...
like the one I had on my little green bug
with the pink flower decals...
that I drove so long ago...

So today,
with everyone in a mood
of quiet contemplation...
This is what I would like to suggest
for your consideration...

Just suppose, one day,
they gave a war...
and nobody came...

Sunday, August 28, 2011

the jester and the night crawler 2

OK...I did it again...
my hand slipped
and I pushed publish blog
instead of save
as I was typing...

I refuse to get upset!!!
Everything matters, nothing matters very much...

So I will continue now with my story...

The jester does not like it when I scoff at him...
He wants to be taken seriously...
So he grabs one leg and then the other
and flips each one in turn
like he's throwing fish...
around the bed...

He's in control...
My legs are bouncing everywhere...
There is no place to just curl up
and fall asleep...

I'm buzzing and humming
humming and buzzing
but the familiarity of it all
is lulling me into a kind of surrealistic doze...

That's when the night crawler
slick operator that he is
makes his move...

The night crawler has taken a vow...
He wants to show me
the nooks, the crannies,
the edges and the minutes
of each and every hour
of the night...

If I happen to close my eyes
and catch a wink or two of sleep
during the tour...
He sends the joker in to flip a leg
or twist my fingers into little knots...

Though jasmine scented
the summer nights here in LA
seem to be growing warmer
and more humid daily...

September is a few days away
without a hint of autumn or a breeze
in the distance...

I'm longing for lovely cool breeze...
The kind that blows gentleman callers away...




Sunday, August 7, 2011

a tad weepy...

Last Thursday,
one of my little MS nightmares came true...
and I've been a tad weepy
ever since...

I was backing down our driveway
when my right leg cramped!
My foot was on the brake
the way it always is
as I'm backing down...

Our driveway is a bit steep
but I'm quite accustomed to backing out...
I've been doing it for almost ten years now...

So there I was...
in reverse, picking up speed,
foot clamped tightly to the brake
but buzzing madly now...
and my leg cramping
as if someone had rammed a screwdriver
through it...

I reached the bottom
my foot still pressed desperately
into the brake pedal
hitting the retaining wall to my right,
cracking the bumper of the car...

My leg relaxed then...
as suddenly as it had cramped...

I am so careful not to drive
if I have even the slightest inkling
that maybe I shouldn't...

If I've taken headache meds
for several days in a row
I don't drive...

My leg or my foot
cramping while driving
is something that I've worried
myself amply crazy over...

And now it's happened...
I'm a tad weepy...
but not sure why...

I'd like to forget about it...
but I won't...
not my nature...

So, as my friend Annisa says,
it's a sweet warning...

And I can remind myself,
Everything matters, nothing matters very much...

Wednesday, July 13, 2011

MS...as usual...

This won't be the longest blog I ever wrote...
it's one of those blogs
when I just need to write something
so that I feel that I'm productive...
acting positively...
and not giving in...

My legs feel like flaming red hot torches...
Everyday my head seems to pound
a new beat...
Just when I catch on to the tune
it switches slightly...
Confounding me yet again...
How will I learn it this time?

My fingers twitch...
they tingle...
they jump...
they burn, they snap, they pop...
I drop things...
Then suddenly,
it feels like I don't have any fingers...

Nights are like long narrow tunnels...
I twist and turn
then twist again...
wishing I could stash my limbs
into a magic box...
and retrieve them
in the morning...

I feel a bit like I'm lost...
My world has become so small...
When I feel this way
I live like a recluse
or a hermit...
it's lonely...
but who wants to hear someone complain...

I'm tired of the dialogue
inside my head...

The summer landscape stretches
wide and endless in front of me...
The barometric pressure bounces daily...
Time is not a luxury when it's all you've got...

But Friday afternoon Ethan will burst through the door
after science camp laughing and shouting
"Gramma..."
He's having dinner with us
and spending the night...

That magic box will suddenly appear...
for those few precious hours...
my MS will slip neatly inside
closing the lid...

And Ethan and I can play,
we can read or swim
or do anything at all
that strikes our fancy...

Sunday, June 26, 2011

notes about the questions blog...

I'm having a mini meltdown about accidentally hitting the wrong button as I was attempting to save my writing...my hand jerked and spasmed and I of course, hit the publish post button instead of the save button...I was starting to get a headache and thought it would be a good idea to stop for the moment.
The harder I searched for a way to correct my mistake, the more my head began to throb and it still is but I'm too stubborn to let this go without an explanation...also, tomorrow we're taking Ethan to the desert to see his great grandparents and that is prority. Since I can't seem to do a thing about it I've decided that things happen for a reason and that I will just let the beginning of my questions blog stand as is...to be continued...
next weekend when we return and I'm settled...I'm not perfect, with or without MS..and I made a mistake...
Maybe that was a really good thing to happen in this particular space among friends who might make a similar mistake...and as always, everything matters, nothing matters very much...
sweet dreams...

questions

For as long as I can remember
a question has been resting
lightly behind my lips...

As a little girl.
I was an early talker
and everyone was either
charmed or fascinated
by the precocious mouthfuls of words
I casually tossed around...

And so when I began to fling
"why?" or "how?" or "who?" around
like a novice reporter
it was just as "precious"
for a while...

As you began to grow up a bit
the novelty becomes tedious...
but what do you do
with so many mouthfuls
of questions?

The real question, however,
is knowing when to ask
a question...
like most things in life
questions are about timing...

Monday, June 13, 2011

claiming my spot...

I suppose that like most people
I have always been searching
for my somewhere...

Still not feeling too terrific
or sleeping as much
as I should...
it's been a tad difficult
to focus on just what I wanted
to write about...

or much of anything
if truth be told...

And any energy that I can manage
as always,
goes to Ethan first...

So when I needed a little help
I reached for my own files
as I often do...

Among the memories,
faded and bright,
something will be a bit shinier
or even noiser
on the time worn pages...

Am I too old
to be searching once again...
wanting to redefine myself...

Or is it as my friend, Michael says,
"I'm going to die with potential..."

I've thought about this
during those long opaque hours
when I should be asleep
and again, when the light is clear
and transparent...

When all is said and done...
who would chose
to be left oozing with potential...

So my search,
my journey,
my quest continues...

I went the other morning
and got as Ethan says,
"sparkly toes"

"It's like a spell, Gramma,"
he assures me...
Maybe that spell
will make my toes tingle
in a different way...

this is the little helper I found in my files
that nudged me along this particular path...

                              Sonnet of Space One

The space of where I am and where I'm not
is space of there and space of not; it's space
of colour and space of rhyme, but where's my spot?
The space of where I am and where I'm not.

The lack of space of where I am is space
of where I'm not but space of where I wish
for space to be; it's space of none, it's space
of little space and space of little trace.

The sum of space of where I am and where
I'm not, is space of total space and space
of numbered rhyme; it's space of then and space
of there, the measured space of pregnant air.

The space of where I am and where I'm not
is space of space; and space has claimed my spot.

Friday, June 3, 2011

I needed to write about nothing...

I needed to write about nothing
because that is the only word
that describes flawlessly
how I feel...

My hope is that as I write this
I will begin a journey
to discovering something...

I suppose some might call this exercise Zen...
Maybe even me among them...

This is sort of the writing version
of what I do
when I collage...

I paint wash upon wash
of dazzling colour on fragile tissue paper...
abandoning myself freely
to the joy of colour...

Then when my papers are dry
I tear them up
with equal abandonment...
layering them back together harmoniously
with glue and whatever found elements
strike my fancy...

I've been so deeply immersed
in my state of nothingness...
that I barely noticed the extravagant
explosion of wild lavender jacaranda trees
surrounding me...

Any other year
I would have been anxiously
awaiting this once a year spectacle...

Anticipating not only the beauty
but the lovely, lazy days
that blooming jacaranda trees bring...

I've been so still...

Life is happening around me
like a dream...
my life feels suddenly so small...

This seems to be a moment to choose something...
so I'm claiming this space...
writing a few simple words to share...

Then going outside to sit on my own front porch
to enjoy the jacaranda trees
while they're still in bloom...

Wednesday, May 11, 2011

squeaking by

This is not the blog
I was planning to write...
This is the blog
I needed to write...
because I needed to write
something...

A few weeks ago
I began working on a blog
that I hoped would be
intriguing and fun...

I could visualize the words
sparkling on the page

Then like out of some dark fairy tale
the winds howled, growled
and lingered...

My head began to ache
and ache and ache...
My allergies flared...
free floating anxiexty settled on my shoulders
like a shawl....

I grew very very tired
wandering in and out of days
as if I were lost
in a maze...

Sometimes MS plays tricks with my cognitive abilities...
springing like a jack-in-the-box
to challenge me with ordinary little things...
one of them being
the task of putting my words together
just the way I like them...

I have all the words
that I need in my head...
I can even imagine them
neatly, precisely arranged
expressing just what I want...
but nothing happens
the way I'm seeing it...

My anxiety grows...
I become hesitant...
I curl into myself
like a snail
and retreat...

I don't get anything done...
because nothing seems to be the way
I want it to be...

So there I am...
tired, restless, anxious, headachy, nervous...
swirling. twisting, floundering...
unable to grasp onto anything
tangible or concrete...

These last few weeks
I've been wobbling on this slippery slope...
The wind relentlessly pounding
in my ears...

I'm carrying alot of baggage
at the moment...
some of it worn and tattered
some of it new
the damage still shining brightly
on the surface...

The winds will eventually fade
and blow elsewhere...

When I taught preschool
many years ago
I would say that,
the kids blew in with wind
in the morning
and they'll blow home
with the wind
in the afternoon...

It's all about understanding
the nature of wind...
like so many things,
it is what it is...

My free floating anxiety
will eventually
blow away too...
it always does...

Then I can go back to writing
that other blog
I was working on...

These last few weeks have been
one wild windy ride...
just not what I would call
thrilling...

Sunday, April 24, 2011

the mysterious universe

I believe that the universe is mysterious...
And I believe that we each have a destiny...
We may arrive at that destiny
by the choices we freely make
but I still believe
we are going where the mysterious universe
intends for us to go...

This has been my way
of making sense out of the senseless
since I was a very little girl...

It's Spring again...the season of rebirth,
reawakening, of miracles...
The holidays of Springtime are all about miracles...
and possibilities...
and the mysterious universe is nothing
if not a place of possibilities...

A few weeks ago I wrote about Ariana's sadness...
and my frustration
because I did not know how to help her...

Then I received an email
from my friend Barbara,
who has her own mysterious knack
for sending me perfectly timed emails...
containing exacting the thing
I did not know I was searching for...

This is Barbara's email...

                   Segulot
a mystical Jewish formula for good mazel
and who doesn't need some

just 27 words

"G'mar Chatima Tova! G-D Our Father,
walk through my house & take away all
my worries & illnesss & please watch over &
heal my family...Amen..."

This prayer is so powerful...
Do not break
or ask questions...
Pass this to 12 people
including me...

I sent this to Ariana...
and then,
on a whim,
I also sent it to Arlo's cell phone...

I never expected Arlo to see it...
but I knew that my daughter would see it
and understand that it was for her...
and maybe a little more as well...

The day after I forwarded Barbara's email
Arlo took a slight turn for the better...

A little over a week ago
Ariana was able to bring Arlo home...

It's Springtime...
Isn't it delightful to live
in a mysterious universe
full of possibilities...

Thursday, April 14, 2011

it's a mad mad world...

Mad is one of those strange little words
with vast and varied meanings...
and because it is an adjective
it is also a descriptive word...
so mad is a very very powerful,
potent little word...

Just to give you a quick overview
mad can be used as...
eccentric, crazy, demented, unbalanced,
bonkers, wacko, stupid, simple-minded,
hare-brained, driveling, fanatical, muddled,
confused, giddy, provoked, irrational, reckless...
the list bounces on and on...
between the silly and the dangerous...

I've tried to keep this blog
away from that very slippery slope
of the political...
that's probably why I'm writing this today
and not last Friday...

After great consideration
I feel that it would be dishonest
not to say a few words about what almost happened...

Since the issue centered around women
and health care...
I think that both are topics
for this blog...
my blog...

The first thing that I want to say
is that until everyone in Washington
gives up their fancy designer first class
health care and has to face daily
the same challenges as those people
they claim to be representing...

As far as I'm concerned,
they are blowing hot air...

Isn't there an old saying,
"you're either with us, or against us..."

As I pondered this
the first thought that came to mind was
we are living in a mad mad world...

I think most of us feel like this recently...
We wake up each morning wondering
just how much the world has changed
from just the day before...

And with all the sources of information
in the world today
I don't know anyone
who is comfortable
believing what they hear
on the news
and taking it at face value
like most people did
when I was younger...

With that said,
I am not a political writer...
I am a personal writer,
I am a metaphorical writer,
I am a poet...

So once again,
I will use my best tools
and honour National Poetry Month
and give you my metaphorical take
on what's happening...

"What's all the ruckus?"
came a shout from the distance

A  witness recalled the moon
bent benignly over the trees
and filaments of starlight
quilted together

No I know works with a net any longer
there are three clowns somewhere
asleep in the clover
though I have it on record
from a confirmed source
that one of them
has a definite preference for petunias

You really need to think
about reexamining your life
when people start whispering
about dissatisfied clowns

It really is a mad mad world...
The question used to be,
do you want to get off?

Thursday, April 7, 2011

the invisible woman in the mirror

When you have a chronic illness
being asked a simple,
"how are you?"
is the ultimate loaded question...

Not only do you have to decide
what you want to answer
but you also need to decipher
what the asker
really wants to hear...

Most of the time
you can depend on your instincts...
especially if you've been doing this dance
for a long time...

And then there are the times
when you're just too tired
to dance...

By writing this
I am claiming my share
of responsibility...

I'm not good or clear or fair
about asking
when I need something...

For me it's just easier to do nothing...
say as little as possible
and hang out with the poodles...

April is National Poetry Month
so in that spirit
since I am nothing
if not a poet at heart...

I'd like to express myself
in the way I feel I am
the most free,
the most honest,
the most me...
in a prose poem this time...

perhaps I should have used
an ordinary pencil
when I signed into some one's life

at least then
if they wanted to be rid of me
there would still be all those little scruffy bits left over
when the eraser was done working

I don't think I meant to be arrogant
when I signed my name
in vibrant inky purple

I always chose the small letters
non intrusive, but maybe still, distinctive
they suit my name
and me
look neater on the page
were quieter too
didn't cause trouble
or impose

but here I am
rounding another corner
that wicked spell caster
who recently claimed my cards
is up ahead
flicking her wrist again
turning my glorious violet ink
invisible

When you have a chronic illness
it's too easy to get into the habit
of staying home...
of being alone...
of waiting...

It's too easy to pretend
that you're doing more...

Wednesday, March 30, 2011

I wanted to write about spring but...

It's Spring...
and as one of my favourite poets,
e.e. cummings said,
"the world is mud luscious
and puddle wonderful..."

I've been simply muddled...

Sadness happened once again...
Ariana must face the possibility
of losing her dearest friend, Arlo...
and, she's the one in charge...

This is her first experience of this sort
and nothing teaches us how to handle it...
or what is right and what is wrong
because there is no right or wrong...
It's all instinct...

And...there are a lot of ands...
She's afraid...
She's angry...
She's physically overwhelmed
with her own situation at this moment...

I search my memory,
my heart,
reaching deep inside myself
for words that are not a cliche...

I have an aversion to being trite...
I get all prickly at the thought...
To me silence is more palatable..

So I'm standing at what I call
an edge of place...
A Mom desperate
for an answer...

I look up at the sparkling Spring night sky...
I stare into the face of the moon...

I imagine my child,
though she is all grown up,
at this moment I only see a sad
and frightened little girl...

Ariana has always been fearless...
should I remind her of that now?

My mind wanders aimlessly,
anxiously, trying to grab onto
something floating in the cool night air...

I'm surrounded by nothingness...

And then the simple truth comes to me
wrapped in nothing
but it's ancient, timeless magic...

All Ariana needs to hear me say is
I love you, Dootie Bug...

Friday, March 11, 2011

a small story about tears

I can't believe I'm sitting here writing
after posting the blog last night...
I lived that blog for a week
then wrote it for another...

I was exhausted...
though not enough to sleep properly...
but that's not what I want to write about
at this moment...

This afternoon I got the dearest email
from my friend Joni...
and I began to cry...
again...

I have said before
that I have cried enough tears
recently
to make a sauce for my sorrow...

Suddenly it occurred to me
that I could begin freezing
that sauce like I do my soup
or spaghetti sauce
and save myself some time...

I'm being naughty now...
but that thought began to spin,
dance off into the daylight
until a myriad of images about tears
filled my poet's head...

Sometimes the tears I have cried
are as endless as raindrops...
delicate crystals mined
from my heart...
I see myself silently
wrapping them around my throat
to wear like any warrior
might wear his medals
earned in battle

Then there are those other tears
my tears of stone
each one tapping my cheek
as it falls
so I won't forget that it rested there...

Before I end,
as I thought about tears,
I remembered a conversation
Ethan and I had not too long ago...

Ethan and I were hanging out
and he asked me one of those questions
the kind that could be serious or silly
or both...

just the typical what if, little kid,
what am I going to answer question...

"Gramma what would you do if something happened to me?"

I would cry feel out of my mouth
without a thought...

"Even if it wasn't serious?"

Then maybe I'd cry just a little...
as I'm wondering where he's going with this...
or maybe we're done...

"If it was serious then you would really really cry alot?"

I decide that I'm going to turn the tables on him...

If something serious happened to you
I would cry so much
no one could stop me...

"Not even Hempa?"
He looks amazed,
maybe shocked...

Not even Hempa,
not the doctor,
not a plumber,
I reply...

Then he cracks up...

"Gramma,  a plummer?  you're a person..."

I would being crying so much
I tell him,
that everyone would think
I was a faucet!

Now we're both cracking up!

In fact, Hempa would probably call 100 plumbers...
1000 plumbers, he adds,
or a million...
he likes where this is going...

But nothing they did would work I say...

"That's because you love me too much, Gramma,"
Ethan says laughing...

How come you're so smart I ask...

Thursday, March 10, 2011

this was the week that was

When you read the butterfly blog
I realize that it shouldn't feel like a ping pong match...
but sometimes that's the way my mind works
so for the sake of authenticity
please bear with me this time
as I move back and forth
through my thoughts this past week...

I've been living an almost reclusive existence
since my adventures with MS and the flu...
I am a night owl, I am someone who thinks too much...
being a night owl who thinks too much
is being a woman who someone has put a curse on...

Then adding needing to stay at home
into that mix
it's like a double whammy!

Who out there in the universe has put this curse on me?

Somewhere in the middle of the night
as February was ending and March was dawning
I decided to take some baby steps back out into the world...
I flipped through my calendar,
something I hadn't done since the onset of the flu...

I began my reentry by sending birthday wishes
to someone I don't see or talk to very often
but she's someone that I was destined
to be connected to and that felt instinctively good...

She sent me back an incredible message...
She called me "butterfly wings"
which made me cry
in a really profound and good way...

Someone gets me...
I take one baby step
back into the world...

And then it all begins to unravel...

My son calls to say that Billie,
a wonderful, beloved dog...
it was her time
David and I both reminded him
that this is a part of loving a pet,
the responsibility and the privilege...

Nothing makes this easier...
we remind him
about the dog pile
our family has waiting
at the Rainbow Bridge...

If you've never heard of
the  Rainbow Bridge
it's that part of heaven
where we are reunited
with animals we have loved...

I don't know how I feel about heaven,
 but I believe in the Rainbow Bridge...

As the week began to fold upon itself
like another stack of laundry,
I hear the sound of breaking glass
inside myself
as another piece of my heart breaks off...

My Sheila's daughter in law, Shay,
has lost a valiant fight with breast cancer...

Ashlynn Sheila's beautiful granddaughter,
I'm her Fairy God Gramma,
is eight years old...
Sheila found out Shay was going to have a baby
just before she died...
but she never knew that Ashlynn
was a little girl...

As I talk to Sheila's son Darryl
I tell him how very proud his Mom
would be of the man he has become...

We are crying and laughing and
talking over one another...
We are finishing sentences for each other,
memories that were Sheila's and mine
and Sheila's and Darryl's seem to overlap...
Suddenly I realize we are speaking Sheila...

I tell Darryl this...
He understands completely...
He sighs...

Then I make an unplanned confession...
I talk to your Mom
more than I talk to my friends
who are alive...
Darryl tells me he does the same thing...

I always try to do little things for Ashlynn
that I know Sheila would have done
if she was here to do them...

But more than ever
I know the most amazing gift
I can ever give to Ashlynn
is to allow her to know her extraordinary Gramma
as I'd like to think only I can...

I even have Sheila's last bottle of perfume...
so Ashlynn can know the comfort
of her Gramma's unique scent...

I believe that there is a powerful magic
attached to scent...
My daughter, Ariana, sprayed a little stuffed black kitten
with my Shalimar before she left for college...

And sometimes before Ethan leaves here
he disappears into my bathroom
and I find him discretely
spraying himself with my Shalimar too!

Once I asked him why he was doing this
and his answer was simply,
"I'm taking your smell with me, Gramma,
so I won't miss you so much."
I think he was about three and a half
when he said that to me.

No matter how badly you're feeling
spray yourself with a little perfume...

As the week limped and lurched forward
I found myself suspended
in the dark cave of night
held tightly in the sinuous grip
of night's long arms

I slept more fitfully than ever
waking with misty eyes
my cheeks resting on damp pillows
but there was no place to go...

I felt like my own prisoner
a night owl, who thinks too much
longing for sleep...

But tricks are easily played
during those shifty hours...
the dazzling brilliance of the velvet darkness
can be interpreted as clarity
and lead a weary mind down paths
better left untreaded...

I begin thinking these crazy thoughts
the crazier they got
the faster they were coming toward me...

Finally, I settle myself...
I am forgotten baggage
in the attic of other people's minds...

When Friday comes along
my son brings Billie over
to say good bye...

As they drive away
my vision blurs
and it's not just the tears...

I see Brandon melting away...
he's about five years old
just a little boy again,
a little boy and his beloved dog...

I want to chase the car down the street
bang the on the door
until they get out
hold on and never let go...

David goes off to take a walk
before picking up Ethan...
I decide to call Ariana...

Ariana has had 22 procedures
for her systemic lupus
since the beginning of the year...

Most of the time
My Warrior Goddess Daughter
amazes me with her coping skills...
but she's feeling particularly vulnerable
at the moment...

Ariana and I have not been able to get together lately...
We've both had various viral infections
and our auto immune systems
are butting up against one another...

Actually, sometimes I feel like our chronic conditions
disagree the same way mothers
and daughters do...
The differences and the similarities
often too close for comfort...

There probably should have been
a better moment
for us to talk...
but Ethan is spending the night tonight
so if not now, when?

We've played phone tag all week...
Procedures, naps, sleeping off anesthesia...
being simply too weary
to hold up the phone
or to listen
to one more thing
you cannot bear to hear...

I tell Ariana about Shay
and we sob together
both missing Sheila,
both so sad for Ashlynn...
and Ethan bounds through the door...

We agree to talk some more tomorrow...

With a mischievous grin,
Ethan tells me that we're going to stay up
til 2 o'clock in the morning,
maybe 3...
he's a night owl too!
this is not impossible...

At approximately 2:45
as we're falling asleep,
Ethan sighs...
that sweet childish breath of dreamland
resting on his lips...

"I love you, Gramma...
You're my best friend...
You and my Hempy..."

At last,
something wonderful...
something to take a giant step
back into the world for...

Thursday, March 3, 2011

scrambled eggs

When I was first diagnosed they told me if I ever got the flu that it would be quite an experience...
They DID NOT LIE!

Almost 6 weeks later and I'm still not doing so terrific...
Everything matters, nothing matters very much...

My neurologist said that I would be weak for the next few months...
He advised going slowly, pacing myself,
not being so hard on myself...
as he knows I can be...

Imagine that...
Permission from the doctor...
Permission to do what?
I don't feel like doing anything
that the doctor's permission would give me absolution from later...

So, this is what it's been like...scrambled eggs!
My mind, my body...
all of me is scrambled up!
It's as if some master of mischief
took a whisk to me...
got creative, had a blast,
and couldn't stop...

The physical stuff I can put
in the it is what it is file...
I've been doing this dance a long time...

What I resent is what happens inside my head!
My head has been full of marshmallow fluff...

The weird sleeping schedule that
accommodates all the ups and downs of the flu...
and I'm not a championship sleeper anyway...
and the Fellini style dreams...
Also, when you're having an MS exacerbation
you're cognitive thought process is not full function...

My limbs have felt like they're wrapped in chains...
and all the missing bees have taken up residence inside me...

I'm still on the be careful what you wish for diet!
And healthy food gives us the strength to get well...

The scariest thing I've learned though
is how easy it would be to never go out again...
I'll save writing about that for another day...
That truly is a hot topic...
and too much for me to handle
my first time writing again...

How sweet to be a cloud
and just simply drift along...

Monday, January 31, 2011

an afternoon in the garden

As I type the words,
"an afternoon in the garden,"
it sounds like a foreign film title;
a little magical, enchanted, wistful...
You sense that something mysterious
is coming...

It was a bit magical,
definitely wistful,
and there was
an aura of mystery too!

Last week, while storms raged
throughout the country,
southern California was beautiful...

I decided it was time
to make some sense
out of my neglected garden...
It had been too long...

The excuses, the reasons,
all valid, well mostly valid...
were holding me back
from something I loved doing...
Tending to my garden...

I was tripping over my own feet,
strangling myself with my own arms;
I had been feeling weak and tired
for a long time...

The kind of chronic companionable
weakness and tiredness
that makes you feel anxious
and blue...
a hostage to a situation...

I knew all this...
I had broken free
so many times before...

But that doesn't mean
that each time isn't
just a teeny tiny bit harder
than the time before that
and the time before that...

Sometimes all the signs
in the universe align just so...

The lovely weather,
my friend Judi suggesting
a stroll through the nursery
before our movie date...

A gardener at heart,
I couldn't leave without purchasing
a flat of delicate pansies and
an about to bloom
lily of the valley shrub...

The next afternoon I pulled back my hair
and tucked it under my straw gardening hat...
I wriggled my achy fingers into my pink gloves,
grabbed my gingham tool bag, my bamboo stool
and got to work...

For an afternoon
I forgot that my fingers were stiff,
tingly and as tight as if glued together...

My gloved hands scoped fresh soil
from newly opened bags,
tucking it around the little pansies
as I placed them in their new beds...

I clipped, trimmed and mulched...
I bent, knelt, and squatted...
I can't remember if my legs
were buzzing or numb or both...
I didn't really care...

I lost track of time...
All that mattered was my garden...
the joy of a warm, bright day,
the pleasure of planting flowers...
the soothing feeling of accomplishment...

Saturday, January 22, 2011

how quickly we forget

This week has been one of those weeks...
A headache week,
A week filled with MS buzzes, tingles, twitches...

Day after day of carrying heavy arms,
walking on shaky legs
and fingers that short circuit and blow up,
going numb as I try to type on the computer,
write a note or turn the page of a book....

It's all happened before...
It will all happen again...
like that movie,
Ground Hog's Day...

Everything matters, nothing matters very much...

What surprised me this time
was that I forgot
or let myself forget
about the power
of my migraine pills...

It's not that I don't have headaches all the time...
I have some kind of headache daily...
A doctor once told me,
"think of the headaches on a scale of 1-10"

Anything under 5,
I use my other pills
or tough it out...
and my secret weapon,
I drink a real coke...

Well, the other morning,
it was all too much...
my left eye was throbbing,
I was restless, sleep wasn't an option...

I ripped open the packet
and as I had many times before,
took the migraine pill.

I wasn't hungry
but I never like the pills
landing on an empty stomach
so I had some tea and toast...

I try not to rush about
but I seemed to be moving
in great loopy circles
like a naughty crayon,
scribbling faster and faster...

"Just get ready slowly,"
I tell myself...
So I put some toothpaste
on my electric toothbrush...

it's not the real kind,
just one that has a control
in the handle...

Anyway, I turn it on
start to brush my teeth
and WHOA!!!

My teeth, which I didn't realize
until that moment
when the electrical jolt
of my faux electric tooth brush
presses against them,
feel like chunks of thick, icy glass...

The jolt of the brush
against the frosty chunks of my teeth
sends a current of power
down my legs
and my toes start to curl up
inside my slippers...

My hand is pulsing,
and unable to react quickly
as it holds the brush,
and one lone dangling finger
fumbles for the tiny tiny button
in the handle that will make it all stop...

I finally dropped the toothbrush
into the sink...
and left it there vibrating,
as I collapsed to the floor
laughing,
in a pile of poodles...

Everything matters, nothing matters very much...

Thursday, January 13, 2011

about last night

One of my nightly rituals
is to give myself my copaxone injection...
I have been able to do this
without David's help
for lots of years now...

When I first began taking copaxone
a nurse came to our house
and showed us how to mix it,
where and how to inject it,
how to properly dispose of it,
it was quite a production,
almost theatrical...

But I needed David's help...
My hands made it impossible
for me to combine the parts
and hold onto the syringe...

Giving myself the actual injection
seemed like a small thing
in comparison...

Although in the beginning,
David was the one that did it...
I don't remember exactly why now,
I would imagine sharing the moment
just made it easier...

Especially since this was not like a course of antibotics...
Copaxone was now a part of our daily life...

Eventually, copaxone came premixed...
At first David continued
to give me my nightly injections...
Then I went on a trip without him
and I had to do it myself...

When I got home
I declared my independence...
There were enough other MS moments
we could share...

So now, about last night...
There I was
getting ready for bed...

I casually ripped opened the copaxone...
Then I opened an alchohol swab
and dabbed it on my right buttock's cheek...
I took the syringe and pressed,
as usual,
and I didn't seem to have enough strength in my hands,
at that moment,
to continue to push it all the way in...

Tears didn't just well up,
they dribbled down my cheeks
as I stood there,
holding a needle in my tush!

David, of course, was already asleep!
I didn't want to call out...
I was worried that I would really alarm him...
He would think that I had taken a terrible fall...

Maybe, even though I was crying harder now,
I was also being a bit stubborn...?!

I am, though easy going,
quite stubborn...
But when you're pressing a needle
partially into yourself and
it's sort of standing there, not moving
you need to do something...

I tried to take a deep breath
but settled on a few smaller ones...
"OK, just pull it out
and let it go for tonight,"
I said to myself...

But like I said,
I'm stubborn...
and these shots
are like gold...

I could not rationalize wasting it...
I can't exactly explain what happened next...

My hand felt numb but it hurt...
The syringe went in where it had been lingering...
There was only a smidgen of blood
when I finally released the empty disposable needle
and pulled it out of me...
I dabbed it with another alchohol swab...

And that, was that...

Will it ever happen again?
Probably.
Am I going to worry about it?
No!

Monday, January 10, 2011

what's monday without a little...

Monday...
a new week
a fresh page in my date book
possibilities, blanks to fill in,
people, places, emotions, aches, pains...
challenges...

What's a Monday morning
without a few twitches
in the legs
or some buzzing
up and down the arms...

It just wouldn't be Monday
without a slight headache...

And, of course, how could I begin my week,
without swallowing my morning handfull of pills...

It will be the same tomorrow...
on Wednesday,
over the weekend...
as the song says,
"the beat goes on..."
but so do I...

I twitch a little here...
out buzz the bees there...

I like to think my headaches
give me perspective,
maybe even sensitivity,
a dash of creativity too!

The pills...
after all these years together,
the pills are just the pills...
though I've worked hard
to keep their numbers down...

So it's Monday...
and like every other Monday
I'm moving to my own tempo
and glad...

Saturday, January 8, 2011

waiting for signs from the universe

This morning I woke up early
after a particularly restless night
to go to Ethan's first basketball game...

Today also would have been my Sheila's birthday...
and as is my ritual,
last night at sundown
I lit a candle for her...
silently hoping it would blaze
an extra day...

The basketball game was delightful!
The 7 and 8 year old boys,
all dangling arms and legs,
dashing back and forth,
excited to be a part of something
greater than themselves...
And Ethan made a basket!

Could that be a sign?

After the game,
David stopped at a great little French restaurant/ bakery
to pick up a loaf of freshly baked olive bread
to bring home for our breakfast...

It was amazing...
simply slathered with butter,
with every bite
the lavender hills of Provence
swayed in the distance...

Maybe, another sign...
Sheila, a fabulous cook and baker
would have adored that bread...

After cleaning up the dishes
and glancing through the newspaper,
I felt overwhelmingly sleepy...
not tired but sleepy
like a small child who cannot stay awake...

David had his own plans for the afternoon
and nothing that I was thinking about doing
was urgent or could not wait...
so I crawled back into bed
followed by three ridiculously happy poodles,
falling fast asleep
as soon as my head touched my pillow...

I don't remember dreaming...
I barely recall feeling Lilirosie and
Gaby huddled next to me...
Usually, I flip and flop around
like a fish out of water...
But as I slept on,
a magical aura of stillness held everything,
me, the poodles, the bed, the air...

I opened my eyes to a dusky sky
and just for a moment that aura lingered...
Then all three dogs sprang up at once
barking wildly as the front door creaked open...

David walked into the bedroom
the poodles clamoring to greet him...
He smiled as he said,
"You really were exhausted..."

Today as I think back
over what happened,
I can't help but believe
Sheila helped me
get the rest I needed...

Sunday, January 2, 2011

pondering

I'm not a resolution making kind of person...
What I am is a pondering kind of person...
So in honour of the New Year
and New Year rituals etc,
Here are some of my first,
official ponderings...

everyone
should
run away;
and
have
a
quiet
day.

when I was little
everyone told me
I must wait
until I got bigger
now I am bigger
but I don't understand
what did I wait for?

If everyone walking down a street
smiles at someone
and then that person smiles
at someone and so on and so on
then soon the whole street
will be filled with smiling people...

And lastly, but certainly not least...
Wouldn't it be amazing if
this year they gave a war
and nobody came...