Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
The Power of Words and Inner Spirit
by Diana Neutze
It must be the most consummate
burglar of them all.
At the beginning, the thefts were basic;
walking, dressing myself,
turning over in bed.
But later, it removed my ability
to feed myself, to sing in a choir
and play the piano.
It seems the thieving is systematic;
when I spasm, I either go rigid
like a corpse or curl into a fetal ball;
my very beginning
and my very end are intact;
it’s the life in between
that is being dismantled.
Some weeks ago I had friends around
to honour a young man’s death.
Shubert’s “Winterreise” was sung.
The room was full of beauty and pain;
the human need to give comfort
was expressed by my friends
holding one another in close embrace.
Entrenched in my wheelchair,
like an armadillo,
I sat watching.
I could neither give
nor receive comfort.
The M.S had stolen
my human connectedness.
I was left with only words,
but words were not appropriate.
It was a double grieving
and brought with it the fear
that one day, even my words
might be taken away.
from Pandora's Perspective
I trip
down a corridor darkly
wall-walking the length
and breadth and height
my fingers reach
(when feeling out of sight)
afraid for tomorrow
but searching for
the rest of my life
I may stumble
I may fall
but never will I stop
-- Pandora Deichert
by Laura of Shine the Divine
truth be told
I get used to
going out
joining in
feeling part of
life beyond the boundaries
of my house.
I get used to it.
got used to it
this summer
as we celebrated my daughter's
bat mitzvah
and traveled to be
with family
and friends
so much joy.
but here I am
once again
peering through windows
foggy from a family's morning
of showers
as they prepare
and leave
for a day at school and work.
and truth be told
my legs are too tired
too weak this morning
to take me even out into the yard
to photograph a single leaf.
so I watch the sun bathing
the trees in gold
from my bed
shuffling downstairs with care
to discover
another pleasing view
through the kitchen window.
truth be told
I get used to
going out
joining in
feeling part of
life beyond the boundaries
of my house.
I get used to it.
got used to it.
but like the filtered sun-glow
slowly shifting her spot light
from one stand of trees to another
I cannot expect a body, my body
besieged by an completely unpredictable disease
to remain the same from day to day
moment to moment
my physical health
like, everyone's really
is in a constant state of flux
my husband is busy
my children are busy
I am here at home
with the dog
the cats
the blessed internet
the season has changed
and with it my ability
to venture out more
often.
truth be told
I pretend a lot.
at least it feels that way
when I am busy shooting emails to and fro
scheduling appointments and activities
for my family (a few for me)
filling up our calendar
filling in our story
I pretend that I will be able to attend
everything
I imagine that I will go
that I will feel strong
on that day
I'll be there too
with everyone else
and truth be told
sometimes I will
sometimes
but truth be told
the calendar details
a story that I watch unfold
most often from my bedroom
I have not driven a car in nearly two months
the last *pseudo-exacerbation
left behind myoclonis in my legs
there are days when it does not
happen
there are days when every time I attempt to
stand and walk
my legs do a wild dance
all their own
but will not allow me to move forward
without assistance
will not support me
so I must slowly edge along a counter top
table
chairs
wall
or simply wait
until the shaking
stops.
I cannot leave the house unless
someone comes to get me,
takes me
somewhere
else.
yesterday was spent sending
emails to several people who do not know
my story
they have no idea how exhausting it can be
for me to organize and arrange
schedule and check in with everyone
on the list
and that's as it should be
the not knowing
how could they
know?
they are strangers
and I imagine those who do know
I have MS
simply don't realize
don't understand
that even though I "looked great"
the last time they saw me
dressed well and made-up
or
because I am still fairly
efficient
able to get things done
most days
with my computer
and healthy mind
they don't know
that I am pretending
acting as if
I can do
everything
as though I have the energy
of a typical woman my age
with time on my hands
not working outside my home
time
on
my
hands
how could they know?
I do my best not to make it obvious
I do it for them
for my family
for myself
because
because I still want to be a part of
not apart from
life beyond the boundaries
of my house.
sometimes I create the foggy window.
sometimes I discover clarity.
but there is sunlight
on my hands
across my chest
as I lay in bed
resting
a rest that
cannot restore
the physical energy
that seems to flow right out my scarred
nerves
into my incredibly
active
mind
truth be told
my mind and my computer
help me to
go out
join in
feel part of
life beyond the boundaries
of my house.
I'm getting used to it.
truth be told
last evening Gordon drove me
to a tai chi class
I sat through it
but moved
in fact it felt as though
I were dancing
as my arms reached out
soaring through space
flying
free
though my hips and legs
remained bound to a
chair
there were emotions like
annoyance each time the teacher
instructed us to slow down
my body only does slow
then gratitude
because slow is easy for me
an MS gift that brings awareness
to my movements
sadness and jealousy as I watched
the other women
walking across the floor with ease
but those feelings were fleeting
quickly turning to admiration
and joy
the energy in the room
softening
with the grace of their movements
and my own
and tomorrow night my friend Viv
will come and stay over
she will take me to book-group
I'll be with women friends
I'll
listen
talk
join in
be part of
life beyond the boundaries
of my house.
20 months of practicing
home bound/gnome mound
living
I'm getting used to it.
another secret
to reveal
another
truth to be told
as much as I want
to go and do and be a part
of life beyond these walls
I am often hesitant to
leave the safety
of our house
to be seen
moving awkwardly
to be heard
on days when
the lilt of my
MS acquired
foreign accent
is not pleasantly exotic
because my mouth and tongue
are not receiving the information they need from my
brain
to work together in a coordinated
fashion
and no one
not even
Gordon
can understand my speech
on those days.
and the consequences of going
and doing
are a day or so of "losing ground"
as I float in my bed
exhausted from an excursion
like today.
this is not a page filled with
"woe is me" words,
please don't mistake it as such
this is simply what is.
a sharing of my experience
as I reflect upon my life
this morning
my goodness it's afternoon already.
well
my truth for today
with a small "t".
if my circumstances were different
I might not have time to write
to rest and see my story clearly
to listen to the stirrings of my
heart
or
be
tender
with it.
this is what is.
this is where I'm supposed to be in my life
right now
on this
day.
I trust that this is
true.
I am grateful for the quiet in the house
for this time of reflection
for the range of emotions
rising up and settling back down
like my belly
my chest
as I breathe.
what a gift it is to feel so much, to be able think and shift a view point, view the earth's beauty through my windows and capture a glimpse of it in photographs that can be shared instantly across the world via the internet.
truth be told
I feel blessed.
*I have 2 neurologists, both wonderful. I visited the first one in August after 48 hours of an increase in my symptoms and my wonky leg thing started. She saw no changes in the mri and told me it was just a "pseudo exacerbation". Don't worry, mri looks great. The other doctor who saw me five weeks after the first one and was privy to witnessing myoclonis in action when I stood up, said it was more likely an actual "exacerbation" that didn't show up on the mri because it occurred in old scars, but again not significant enough to change treatment plans at this point, because (thank God) the mri results look unchanged from 6 months ago. Tysabri seems to be working to slow the progression of disease.
This concludes the 72nd edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on October 7, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, October 5, 2010.
Thank you.
Thank you.
Comments for this post.
Gaz
