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