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...

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