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March 31, 2007

uma update (via blackberry)

FROM ERIK: I'm forwarding John's latest Uma update...I hope this email finds all of you
happy and healthy and well...Also, below John's update, I'm posting some
updated info about visiting Uma, so please scroll down and read if you're
planning on coming to the hospital for a visit. Thanks and much love to all
of you,

---------- Forwarded message ----------
From: john ballinger
Date: Mar 31, 2007 12:40 PM
Subject: uma 3.31

hi everyone,

i've been at the hospital a lot so have not written.
i'm at home now trying to take a break and recharge. i
can't tell you how great it is to spend the nights
with uma. she slept well last night with few coughing
episodes and i really hope this helps her.

yesterday she had a real-time x-ray swallowing test
which then caused the doctor to change her 'diet' to
eating 3 meals a day or pureed food. she does eat some
of it but it tastes pretty bad for the most part.
whatever percentage she does not eat the nurses
compensate for with the g-tube feeding. the swallow
test revealed that she has some hesitation in
swallowing during which time the food or liquid rest
on the valve leading to her windpipe. the hesitation
is about 3 seconds but she quickly swallows it all
down. seeing this made me realize why they wait to
pull the tracheaostomy. if she were to choke it would
be really bad, bad news. but so far she's had 3 meals
and will have 3 each day from now on, with increasing
textures and solidity.

my perspective on her progress is skewed due to being
there all the time. people who come to see her every
now and then comment very strongly on how well she's
doing and how much she has improved. this is good for
me to hear, because there is really nothing like
seeing the person you love most in the world in this
kind of long-term trouble. i've performed music in
front of thousands of people and under extremely
high-pressure situations on serveral continents on
this planet and there is no comparison to the kind of
pressure i feel with uma's health. i seriously
wouldn't wish this kind of feeling on anyone's worst
enemy - it's a lot to deal with.

to tell you that she gets up from the chair or the bed
or the shower or toilet, that she walks with help from
someone, a cane, and a brace, that she is now eating
and elliminating for the most part on her own, and
that she is beginning to use language again is an
amazing thing to relate but it really doesn't tell the
whole story. in terms of her speech and use of and
memory of language, she is in real trouble right now.
her improvement depends on how well and how much and
how soon she gets great speech therapy. because we
only have four weeks of acute in-patient
rehabilitation and then move to out-patient, we are
all looking into augmenting all of this with private
or 'other facility' help in speech and also physical
rehab. if there is anyone out there who has had any
experience with stroke or aneurysm and private
therapy, please contact me as soon as possible and
tell me what you know. we're going to need a lot of
help here both practically and spiritually. as hard as
any of you have prayed for her to live or come home,
please pray and love her that much again for her
ability to regain that which makes her who she is -
her mind, her memories, her experiences, her ability
to express herself and experience other people's
expressions. those of you who know her know her
sensitivity and intelligence, the depth of her soul
and her 'take-no-prisoners' attitude toward most
things. she fell in love with me hard and completely -
just as i fell in love with her. sometimes it feels
like my entire soul is one expanding and constant
prayer for her. people who visit see her spirit and
personality there, but uma is a person who never was
afraid of the depth of life and meaning. language is
the universal carrier of meaning and, while there are
many ways to communicate, for her, speaking was a true
gift. anyone who has seen her act on stage or listened
to her laugh LOUD about something knows what speaking
means to her. seeing her struggle to find words and
really, truly working hard to reach out to people is
wonderful and heartbreaking. i believe she will regain
much but i know how much help she has gotten from all
of us so far and she will need that again and then

there was a conference yesterday with all of the
doctors and therapists working with uma and myself.
some of the things said there were.....that she will
most likely walk out upon discharge with a brace and
cane....that she will almost definitely have no trach
or g-tube...that she will improve her speech
function.....that she will definitely be recommended
for out-patient rehab there....and that she may stay
longer than four weeks as allotted by the county. to
say that my behavior - the direct questions, the
continous presence - has made an impression on the
whole team is an understatment. the head of
occupational therapy has taken a personal interest in
uma's case and the head neurologist there knows my
music work thru mutual friends who are actors.

everything that can be done for her is, i beleive,
being done at the moment. some days it's just not
enough for me. having every life intention i've ever
had be suddenly taken from me (and her), however
temporary it may be, is an experience that can't
always be helped by the progression of her recovery. i
just have to deal with it and keep trying.

sometimes i feel so bad that i can't think of more
stimulatin things for her to do besides just napping
with her or massaging her or watching her favorite
shows on dvd. this morning, before her first therapy,
i asked her if she wanted to take a 'walk' outside.
she nodded. we got her dressed and into the
wheelchair. i rolled her to the elevator. she has
learned to press the buttons. we went up to the 3rd
floor where there is a large open patio. it was empty
except for us and the cool morning air. as soon as the
automatic doors opened she grabbed the blanket on her
lap and drew it closer to her chest. i picked a spot
and braked the wheelchair. i said, 'we're going to
stand her for awhile, ok?' nod. she stood up with
very, very little help from me and we 'walked' 3 paces
forward, closer to the balcony wall. she put her left
hand on a pillar and stood alone while I reached back
to the wheelchair and got the blanket. i wrapped it
around her shoulders and stood behind her. she studied
the outside with me, both of us standing up. after
awhile i whispered to her that last week she couldn't
stand at all. she nodded. i told her i love her with
my whole soul and hoped she understood at least the
intention of it, and we went back inside.

i hope eveyone is doing well. talk soon.




Uma has been getting lots of visitors, which is wonderful, but it's also
kind of exhausting for her. She tries to be "on" for her visitors--to
listen, to interact--and after a long day of therapy, she can get pretty
wiped out after just a couple visits with friends. We're also finding that
since she's started to speak, she's getting increasingly frustrated at her
own inability to make sense of words, and that can make her uncomfortable.

So we've been doing some brainstorming and we think it would be best to put
together some sort of calendar/sign-up list for visitors, so that Uma
doesn't feel so overwhelmed, and to help ensure that you have a quality time
with Uma when you come. So if you'd like to visit, please come! Just email
me first and let me know when you'd like to see her--if it looks like that
day already has several visitors, we'll find another time that works for you
and for Uma.

A couple of other things to remember:

--The best time to visit is between 3 p.m. and 7 p.m.
--Short visits are best--20 minutes or so--because Uma gets tired very
--Silence is okay, you don't have to feel the need to fill every moment with
talk. Uma is happy to see friendly faces and sometimes it's nice to just sit
together and "hang."

Thanks for understanding all of these "rules." We're figuring out what's
best for Uma on a day-by-day basis, taking cues from her. We just want her
to be as comfortable as possible, and to help her get what she wants and
needs. Thank you for your love and support!

Please email me at dimsumday@gmail.com to sign up for a visiting time. If
you could put the word "visit" in the subject line, that would help me keep
the emails straight. I'm slightly overwhelmed with emails, so I apologize if
you've emailed me and I haven't replied yet--but if you put "visit" in your
subject line, that will help me keep these emails separate and I will reply
asap! Thank you...

much love,

Posted by bonnie at March 31, 2007 5:52 PM