Friday, March 26, 2010

Carnival of MS Bloggers #58

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Life with Multiple Sclerosis

The Perfect Ending!
by Paula of MS Scars 2 Stars

My report on my first time Dahn Yoga class experience is almost at the end. But I did promise to be candid in my experience and express my thoughts about the event, and I want to try to convey the support that the other participants gave to help each other. This was very clear to me when I attempted to get off the floor, but more about that later. I was of course unable to stand on my own and I was sitting in the middle of the floor. So with the help of my husband and others I was pulled to the nearest wall for support.

As I sat with my “back against the wall” I thought to myself; that is what the phrase means, “Got your back against the wall.” It was very supportive and solidly reassuring, although I knew I wasn’t going anywhere without help. Then strangely, everyone else sat down on the floor in a circle around me. We were asked if we would like some hot tea by our instructor. After serving us all a cup of tea, she sat on the floor and giving each person her attention asked each of us individually “How did you feel about the exercises?” How has the routine helped you? Everyone shared their thoughts in a group therapy style atmosphere quietly sharing their accomplishments. After, the tea and sharing was finished everyone was ready to leave the session.

Now it was time for me to stand up, everyone offered eagerly to assist me. But the smallest lady in the class affirmed she could help me stand very confidently. I thought, sure this attempt would be human folly. After all I had warned them that they would need a crane to get me off the floor. But, she looked me over and asked if I was ready, and before I could reply with “I don’t think you can…” I was standing. That was as big of a highlight to my day as getting on the floor. I am by no means recommending this be tried by everyone because, she later stated that she had worked in a hospital and had some formal training and experience with people who have trouble walking and standing.

The class was over and I felt great, lots of energy but relaxed!

Some things you see with bad vision are funny or
creepy, like a rubberband that looks like a cockroach.

Today everything seems to be seen through a
screen of fine silk, a pale green. sheer and almost white.
And then there are almost not-there
pale pink batik blotches all over everything, do you see it?

I can almost remember this scarf,
ancient and frail, the green & pink so faded as to be
almost the same, and bouncing around when I look away.
I think that scarf belonged to Lee's grandmother,
when they
went to live in a home, a Home, they left behind a life

went to live in a home, a Home, they left behind a lifetime's worth of
of junk that was unworthy of the move and the limited
space at the new Home. We went one morning (after
AmPm, or what was the other one that opened after
Laight Again closed for the morning? '

We had been out all night, not drinking 'cause Lee didn't
like the way I acted when I drank, funny to everyone

slutty. This was fine, we were both a hilarious buddy
road-trip movie,
buncing from set to set. So we arrived at the
grandparents old
to pick through all their crazy wild stuff. The grandmother
seemed to have been a flapper, with these tiny-size
delicate-brazen heavy silk with beads beading all
beads beading all
up & down, and long bead-string fringes. Lee took all
the tiny sexy women's stuff, and I took one frail
scarf of hers, the rest the old-man stuff,
green & gold seersucker,
legs barely more than shorts.
now I am seeing everything through a shadow of this
disintegrating scarf, too delicate to survive except burned
just slightly into my retinas forever.

The Grandfather also left a stunning pair of huge swim
trunks, I bound them up with a studded belt, just the
skinny knees and then the cowboy boots. We were
such a beautiful pair, really too bad I didn't want to be
in love like that, her girlfriend, and she always knew
"I" would leave "her" for some man as I did almost every
night, as she did even more,
her plans of lesbionics forgotten
for any gaunt-faced guy, who, even better, if he looked
like a junkie, the jaw dropping down like that can really
make those cheekbones shine.
She feared I would leave her to have kids,
with my wide hips & like my mom had done,
get pregnant and get married in the tradition of....

But years later Lee came back to town with her baby girl,
and her
husband waiting at home in San Fransisco
at his blotter-crazy museum and whatever family furniture
or knickknacks that would accumulate in the gravity of
my gone, gone Lee.

I got married too, but it was imaginary. But
everyone saw we were so close, and we had
a wedding so beautiful in the huge snowflakes outside,

and three professional photographers taking even 3Dimensional
a wedding so beautiful in the huge snowflakes outside,

These giant flakes could also still be blurring
I look at, like if the flakes would melt on my open eyes,
there would be tiny searing flashes of white that was
then flickering to almost green, but really so
confusing in that almost-there way, I really can't see
anything through the invisible batik blotches.

I was telling this story to Charlie,
or some part of it,

and he revealed the source of my confusion, this

horrible odyssey that ended with Spackle run outside
and lost in the hall, of course I was exhausted, and not
used to wielding the walker and blocking the cat-bolt
at the same time, and so tired after falling in 14th street
barely catching myself with my finger tips on the honking
dead-stop cab. And staying up til 7 am and waking up
at only 8, and so tired still. He explained that all this
happened in real life
but over nearly three days without sleeping....
not just in the single day that I was trying to
create for myself,
piecing all the memories together best I could into ONE day
and how awful my made-up memory of that day was.

Of course, Charlie had claimed Spackle and she was fine,
Zoey had found her in the hall, a beautiful angel
to sweep up my pit-cat, big shouldered but trembly.

Spack gave Charlie the full body fluff when she bolted up
the stairs and into our embarrassing mess. I guess
Lorenzo saw all the crap everywhere, but it looks
right now likeI am typing on the face of this page, and the BG image
is bouncing from the contrast of the pink & green,
bouncing just fast enough to obscure everything
I have written here.

note: 05/08/09 seems story could end HERE
if not sooner

your letter ends perfectly "g'night." I'm so tired and
having trouble piecing the day together,
How did I go to the grocery twice?
I must have forgotten something important, I was
pre-occupied with scones all day.
I know, enough with the damn
scones, they are tasteless blobs
of overcooked dough. The best.

Today I stopped in the coffee shop to sniff the forbidden
They had a misshaped lump labeled "scone,"
and it had an odd greyish shellac, like some stale glaze
that was reverting
to powdered sugar right before my eyes.

No wonder I fell in the street, but that was yesterday now.

And then there are almost not-there
pale pink batik blotches all over everything, do you see it?

This concludes the 58th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on April 8, 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, April 6, 2010.
Thank you.
Comments for this post.


  1. ♥ DJS too!
    Call me Ima!

    oh, yuck the heart thing is working! I am NOT a heart-type, am not! no, not-not!

    ♥♥♥♥ -shoot me now
    ha ha