latest Uma update from John

uma may 20

Hi Everyone,

I’ve come to the realization that I can’t update on
Uma every week......I think it will be better if I
send a small-ish note every day. (well....at least
that’s what I’ll try to do.)

I’ve said recently that my relationship to Uma’s
recovery is like watching a snail cross the street and
I’m on my hands and knees with my face right down
there near the pavement - just concentrating on the
snail and hoping that the doctors have really told us
to cross the right street and that a car doesn’t come
by and squash us both. Other people come by every so
often and remark about how amazing it is that the
snail has moved to far to the other side of the
street. I look up from the pavement and see just how
far and am amazed. But it takes other people’s
perspective to help me see what has happened.

Today, like most days, Uma and I walked about a mile
in our neighborhood. As of yesterday I began working
with her on straightening her right leg at just the
right moment in her stride. (Have you ever thought, in
minute detail, about what you do when you walk?) It’s
easier to access the leg-straightening detail when she
walks up our stairs. She plants her right foot on the
step, leans forward and pushes up. Before she plants
her left foot she must straighten her right leg -
essentially standing on one leg for a moment. We did
this yesterday after the walk. Today we did it before
the walk and so on the walk I would slow us down and
bend over while we walked and gently push her right
leg back at the right moment - straightening it and
causing the foot to roll more naturally. I do this
about 20 times. She gets it while I’m helping but not
after I stop helping. But the way this recovery goes
is just like that.....she gets it with help and she
needs ever-so-slightly less help each day. It is
enough for gratitude that she gets it with help.

...and then I begin to chant along with her stride,
“Monday, Tuesday, Wednesday, Thursday.....” etc. And
she chants, in time, with me. She does well in
sequence and so I mix it up by telling her to
alternate with me. I say, “Monday”, she says,
“Tuesday” etc. It cycles around to where we each say
each day every other time. (7 days - 2 people). She
almost always gets stuck on Wednesday - she jumps from
Tuesday to Thursday all the time. So then we just say,
“Monday, Tuesday, Wednesday” over and over and then
start all over again. She gets better at it every
day.

....same thing in practicing her writing the alphabet.
Singing the alphabet song helps her find the
pronunciation for a difficult letter. The first time
we did it she would have to begin at the start of the
song each time. Now we just back up a few letters
before.

Today was the first time she took a shower by herself.
I helped her with strategy but she did all the work.
She absolutely loved it. She seemed to feel so much
better standing up and moving around instead of
sitting on the shower chair and having me move the
nozzle around and wash her hair etc. for her. She kept
saying, “wow!” and smiling. Then there were more
strategies for drying.....her back and feet present
the most problems but she did it. .....but how to get
lotion on her left hand and arm? it’s the only arm
that works......I had her put some lotion on her left
leg and then rub the back of her left hand and arm on
her leg. Big smile. ......so....things like that
happen each day.

Tonight Uma helped me cook dinner - stirring the
chicken/onion/garlic/pepper whatchmacallit and putting
produce back in the frig. We ate. She did the dishes.

Yesterday I did a gig and had two friends by turns
come by and watch her. They, in effect, are her
emergency phone call, if necessary, but the visits end
up being so much more than that. In the morning I
prepared meals for her that could be microwaved and
before I left for the job we walked and did speech and
upper body therapy. The days can be so full in this
way. My focus is her. Her focus is her.

Two nights ago she went out to dinner with Erik while
I went to play a show at a theatre we’ve both
performed at several times. I had to go early to set
up and sound check and she and Erik came by at show
time. The place was packed and a lot of her friends
were there. This kind of event is so mixed for her. It
is truly wonderful for her to see all of those
beatiful friends and have them so openly and warmly
express their love for her. But because she can’t
converse with them except to nod or laugh or say, “I’m
fine.” is really frustrating for her and she ends up
being emotionally overwhelmed. So....as soon as the
show is over we sneak out and go home. She’s happy and
sad. We’ll take the happy and accept the sad and
accept every expression of love offered. For all the
people who were at that show and spoke to Uma, thank
you so much and please understand where she “is” right
now. Take no offense that we left early or that she
didn’t say much. She loves you.

As of now she walks better than before. Her right arm
and hand are still, for all intents, non-functioning
but she says that it feels different. The exercises we
are doing each day that our home-based physical
therapist (a professor at USC) taught us cause Uma’s
right tricep and shoulder to stabilize and engage. Uma
really feels it in her arm. When she first did this
with the PT I saw the therapist’s face light up and a
very big smile appeared on her face. .....Uma has
trouble with speech, reading, writing, etc. but I have
hope. Each day she repeatedly copies the alphabet it
gets better. The progress seems glacial when I’ve
forgotten that her brain was so severly insulted. When
I reflect on her condition the first month after the
aneurysm I’m very content with her progress.

Yesterday we were walking home and she stopped and
uttered an, “Ah!” while gesturing at the sky, the
trees, the sun. We did some charades and guessing and
I discovered that she was feeling good about her life
despite the injuries. I remarked at how great it is
that we don’t live in a part of the country where it
snows or is otherwise cold - imagine having to bundle
up and wear boots etc. just to talk a walk - along
with a brace and arm sling etc. Sometimes we feel
very lucky.

She is on the computer each day looking at emails and
her myspace page. She really enjoys this so please
send her a note if you can.

nithipal@hotmail.com or myspace.com/umanithipalan.

If you want to see a really nice picture of her go to

myspace.com/johnballinger

This is a new life of patience and love. Please think
of her mind, her arm, her hand and feel love. Think of
yourself and feel love, too, and accept my love and
thanks for doing this and for all the previous
prayers.

I am so grateful.

John