uma july 18th

JOHN'S LATEST UPDATE, from the 18th:

hi everyone,

i’m sitting in the speech therapy office with uma and
her therapist. they’re looking at flashcards of
various objeccts and people and uma’s job is to name
them. sometimes she needs a bit of cue-ing, sometimes
a lot, sometimes none.

yesterday we went to ucla to pick up the cd roms of
her angiogram films and afterwards went to will rogers
park in the palisades to do speech work and take a
hike. we came home after a side trip to starbucks and
did arm and hand exercises and then sat in our little
pool.

some really nice things happened yesterday regarding
her speech. when we were walking back to the car after
the hike, she said, “what time is it?”, where usually
she would do an end run clear around the needed words.
and then, post-pool, she looked in the refrigerator
and said, “what are we doing tonight?” asking about
dinner. this morning, at the time we normally put in
her contact lenses she said, in an accent stright
from the ‘hood, “come awone!” (come on!) and smiled. i
said, “what?” and she said, “t-contax” and i replied,
in a broad english accent, “well said my friend” and
she says, in an equally broad english accent, “thank
you”. we both laugh.

the other day i was on our front porch looking through
the 2 inch thick medical chart from new york and found
something. it’s a report from the radiologist during
her second angiogram. this was when they were checking
on the coil and this caused her vasospasm/stroke for
which they administered angioplasty to re-open the
blood vessels. upon looking at the original aneurysm
they found a “neck” portion of it that was still
bulging. the original aneurysm was 1.5 mm, which they
coiled. this “neck” is 1.2 mm. they did not proceed
with coiling this because “of the swelling and
vasospasm” they felt it was unwise to proceed with
this. i understand why they wouldn’t have done
another coiling at that time. uma was in pretty
fragile condition at the time. what i don’t understand
is that no one in new york ever told us about this. i
was left with a familiar feeling - that they just sort
of gave up on her and wanted her gone from there. it
reminded me of the hour before we put her on a
stretched on the way to the air ambulance and dr.
hirschfeld said, “by the way, you’ll probably want to
revise that shunt.” so i’ve benn thinking about this
for the last two weeks. we have a neurosurgical
consult at usc the first week in august and i’ll bring
this to the attention of the doctor. also, she has
just been approved for medi-cal and the head
neurosugeon at cedars sinai had, at one point, agreed
to take her as a patient provided she was medi-cal
approved. i’m going to contact him, too, and see if we
can get her in there. i want a more direct and
personal relationship with a neurosurgeon for her.

this almost always brings me around to realizing that
there is only this one single moment in time.....ever.
the curse of knowing that there is a possible future
so easily leads to wanting to change that future. the
best i can do is try to prepare for it as best i can,
try to make sure she gets the best help, assist her
in her recovery and then have a long series of good
moments that we string together to make a past worth
remembering. i never want to look back at any of this
and wish i had done something more (or less). staying
in the present is the best help for that.

anyway - if you felt good praying for or thinking
about her, if it brought you a good feeling or a deep
one, or even if it made you cry and feel worried (!),
if it made you feel more human or part of the real
things in life....do it again. she needs you. i
really believe this.....you all have helped to bring
her here.

and thank you for that. ( i can’t figure out how to
put all the feeling i have into those two words).

more soon.

love,

john