Monday, June 04, 2007

John's latest Uma update (6/3/07)


Hl everyone,

Just on the off chance that anyone out there was
wondering whether Uma had lost any of her personality
or her passion for life and for the objective truth of
life, or her love for me or her friends and family, or
her desire to act and express her love and art, or her
respect for others and the world and all its
blessings....don't wonder....I don't.

She continues to work and improve on everything and
continues to be more frustrated at times because her
improvement illuminates more of the path ahead for her
and she can see more clearly everyday where she's been
and where she wants to go. To risk the broken record
instance, it's going to be a long road. But she is
less bling to it as each day passes. This reveals to
her the tragedy she escaped and the love she's been
given and produces. Yesterday on our walk she said -
and this is a direct quote, "I just want to do what I
need to do today, tomorrow, and the next." And we
were talking in the context of her recovery.

I'm at a starbucks in orange county about to go play a
job and Erik and Lauren Campadelli are with her by
turns today. When Erik came over this morning he
remarked that she is more verbal than she was even
since last Monday. And today in physical therapy at
home she was working on her right arm extensively. I
have a video now of her extending her right arm away
from her belly (while lying down thereby making it
easier to isolate the shoulder muscles from helping.)
I think it was called 'external rotation'. This is
good. As soon as our home PT saw that Uma could move
her arm at all she just 'floored it'. Uma has
actually done nothing but get better since January
31st, despite everything including hydrocephalus.

There have been two times now that I've left her at
home alone for a couple of hours. She's getting better
at calling me on the cell phone. One time she actaully
dialed my number rather than just utilizing the
'return' feature after I had called her. I really
wrestled with this - when do I let her stay at home
alone? One of the answeres to that question revealed
itself when I realized that there have been many times
where I've been working in the studio for a couple of
hours without checking on her. She could have had a
problem during that time and I might not necessarily
have known about it. The difference being that when
I'm not actually at home I would need to have someone
close by to check on her if needed and I believe I
have that option among about a dozen friends all of
whose numbers are in my cell phone and written in my
phone book. Uma was so excitied the first time I left
her at home alone. Her autonomy is thrilling to her.
In this she hasn't changed at all.

Last weekiend we had a nice visit with her aunt, uncle
and cousins in Malibu. Her aunt cooked spicy sri
lankan style food and it was actually a bit much for
Uma. This was the first really hot food since 1/31.
She made it though.

She now sees one of two physical therapists six times
a week and a speech therapist three times a week. We
can carry on this way for many months and we will do

I can't wait 'till she and I can carry on a nice, long
conversation. That's something we used to do almost
daily and sometimes, when I have time to think about
it, I really miss it. I think it will probabaly happen
this year.

Thanks again for all the help, prayers, visits and

Bye for now,


Erica said...

what a great picture of uma! thanks, erik.

Anonymous said...

oh my god. so annoying. i just wrote a long reply comment to you, Erica, and I was totally thinking "dude, I'm back in the comment game."

And then my comment got erased somehow. I'm not sure what happened.

Anyway, ERICA:

All of the photos I've posted up until now have been curtesy of my cell phone, but yesterday I finally cracked and bought a digital camera, which I'm really excited about, so hopefully I'll have many more great photos of Uma to post soon. (Assuming she lets me take any.)

Anonymous said...

That was me. Erik.