Raising money for Uma...

It's been awhile since I've sent out an Uma update. She's doing well, but she's had a rough few weeks, and I thought it would be nice to counteract that roughness with some love and help flowing her way, so I'm raising money to cover some therapy bills. For those of you who don’t know Uma & John’s story, here’s a brief timeline to fill you in on some significant moments:

January 31st, 2007: while she was in New York visiting her fiancé John, a musician who was in NYC on tour, Uma suffered a ruptured brain aneurysm. She was only 27-years-old. Uma was in a coma for several weeks, during which time she had a stroke. Her doctors told us she would probably die (they gave her a “20 percent chance of living” on two separate occasions). But Uma’s a fighter. She woke up from the coma with aphasia (she was unable to speak, read, or write) and with restricted movement on the right side of her body.

March 12, 2007: Thanks to the incredible generosity of friends and family and strangers, we were able to rent an air ambulance to fly Uma out to an in-patient therapy center in California, where she started learning how to walk and talk again, with the help of John, who’s always been by her side.

July 14, 2008: Uma and John got married! It was a beautiful ceremony. A day we’d all been looking forward to with so much hope.

2009: Uma continues to fight to regain her speech and movement on the right side of her body. She does several hours of speech and physical therapy every day. It’s basically her full-time job. She recently applied to be a volunteer at Cedars Sinai, where she will work with other aphasia patients to help them in their recovery.

October 16, 2009: Uma was taken to the emergency room with an incredibly painful headache. There was a lot of fear that she might have been suffering from a re-bleed of her aneurysm, but after undergoing dozens of tests (MRI, catscans, angiogram, spinal tap, etc), her doctors have ruled out all of the scary stuff and it looks like it’s “just” a migraine. As great a relief as that is, she’s still been in the hospital for two weeks now, in a state of constant pain. John has been at her side the whole time. After almost three years of speech therapy, Uma continues to improve. Studies have shown that aphasia patients plateau when they run out of motivation and/or money for therapy. The motivation thing isn’t a problem for Uma. Like I said before, she’s a fighter. But they could always use more money for therapy, and after these last two stressful weeks in the hospital, it would be so nice to ease some of their financial stress. John and Uma aren’t the type of people to ask for help, but when Silvie suggested setting up a website to collect donations for them, I thought it would be nice to ask for them. All of their friends and family have already been so generous in the past, and everyone’s struggling financially right now, so please don’t feel any obligation if it’s not a good time. But even the smallest donations add up quickly, and you would be providing them with such great relief. Thank you!

To make a donation, go here: http://tiny.cc/kaQfG

(TO READ PREVIOUS UMA UPDATES, CLICK ON THE "UMA" BUTTON SOMEWHERE ON RIGHT SIDE OF THIS PAGE.)

good news, nothing to worry about

We just talked to both of Uma's doctors. John already sent the latest news out to his email list, so I'm going to cut and paste his update:

hi everyone,

dr. shevienk just came out, he's the neurosurgeon
here, and he said the 'neck remnant' of the aneurysm
has actually gotten smaller than it was in the
previous angiogram of feb. 16th. it is actually too
small for more coils and that it is probably too small
to clip as that might easily damage the main artery
the aneurysm protrudes from. so......he is 'without a
doubt' comfortable with waiting another six months for
another look. he said this is 'good news', the fact
that it has not gotten any bigger in the last six
months.

just wanted to let you know - this will be on-going
but we will breathe a bit easier now.

with my whole heart i thank you for your prayers and
thoughts. thank you.

we will probably go home in a few hours!

love,

john

at the hospital right now

John just sent this out, and I thought I'd post it:

hi everyone,

we arrived at the hospital at 7:30 this morning and it's now
10:20 am. they just took her into the interventional
radiology room. i'm here with erik and marie. we all
met the doctor, dr. alexander. he has done
more aneurysm coiling than anyone in the country and
he talked with us about what some of the options and
risks are.

he said that the fact that she has been previously
coiled makes the clipping surgery more complicated -
it can make it more difficult to attach the clip. he
also pointed out that clipping isn't always permanent
and that they use a polymer coated coil
that speeds up the scarring/healing/clotting process.
we all feel really comfortable with him and with this
whole facility. it's so different than anywhere else
we've been.

there is a five per cent risk factor, statistically,
for complications such as: bleeding, allergic reaction
to the dye used in the angiogram, stroke, bad reaction
to the anesthesia, etc. so...it's not risk free, but
little in a hospital is. please pray and send love.

it should take between 1.5 and 3 hours and they'll
probably have to keep her over night for observation.

all my prayers, all my love to uma.

more later,

john

latest Uma update from John (7/29), and a TASK FOR MONDAY

FROM JOHN:

Hello everyone,

Uma and I are sitting in a doctors office wating for
her pre-op tests. It’s friday.

She was approved for medi-cal earlier this month and I
remembered that, at one point, in NY, we had contacted
Dr. Wouter Shevienk, the director of the Maxine Dunitz
Neurosurgical Institute and he agreed to accept her as
a patient provided she was a qualified medi-cal
person. So....on Wednesday I called and asked if she
could see him. They set up an appointment for
yesterday, Thursday, and decided, after reviewing
films and charts from NY, that she needs another
angiogram to verify the efficacy of the coils clotting
her aneurysm.

Today we are having tests done to make sure she’s ok
physically to have the angiogram and, possibly, more
coiling on Monday. On Monday, there are three
possibilities - 1) that she would not have any
problems and go home 2) that she would have a problem
that can be fixed by coiling and they would do that
then 3) that she would have problem that cannot
permanently be resolved through coiling and would
require “clipping”, which would be done at a later
date.

Coiling is the placement of microscopic platinum coils
in the “dome” of the aneurysm to assist the body in,
usually, a permanent clot. This is done through a
femoral artery catheter and is not considered a
surgical or invasive procedure. This is what they did
for her in NY. The risks of this procedure are that
coils can loosen up, allowing blood to flow again into
the dome of the aneurysm or that the cois can actually
slip out of the dome and into the blood vessel which
can cause an inappropriate clot or stroke. These
things are unlikely but they do happen. Coils are not
always a permanent solution to an aneurysm and require
that she get checked regularly thoughout the year.

Clipping is an invasive surgery. They cut into her
cranium, locate the aneurysm and clip the “neck” of it
with a tiny titanium clip. This is considered a
permanent fix to the aneurysm if done without
complications in the surgery. The risks involved in
clipping are the same with any cranial surgery as well
as problems with the invasive quality of the
procedure. Any time you stick things in the brain you
can have swelling, vasospasm, stroke, memory loss,
speech problems, blurred vision, headaches, infection,
paralysis, etc. These complications are lessened by
the fact that she is not in the middle of her
aneurysm breaking. It’s not an emergency.

She just went in for the chest x-ray. Earlier this
morning she had the other normal tests and she’s ok to
go.

I was up last night, unable to sleep, thinking about
the options here. The idea that we could have a
permanent fix is very attractive. The idea that she
could possibly be set back in her speech or physical
therapy due to complications of clipping is
heartbreaking. She has come so far and I don’t want to
see any of that amazing work compromised.

It’s now sunday morning. I think I was avoiding
finishing this email because there is a part of me
that, honestly, doesn’t want to face more
hospitalization for her. I thought it enough that she
would be in intensive rehab for more than a year. This
latest has brought back a lot of resentment on the
part of the doctors in NY. Why they never bothered to
tell us about this I don’t know. Maybe tomorrow, after
her angiogram, we’ll find out why they never told us
about it. Though it doesn’t always help to look back
on things, I wonder where we would be in our lives now
if hadn’t been looking through her chart and found
this report about the remnant of aneurysm. But as long
as we have to face this, then we might as well face
the whole picture which includes how we’ll view, in
ten years, whatever hardship she’s about to endure. If
surgery, exluding complications, then we have reason
to breathe a bit easier in terms of recurrance. Also,
and I hope I haven’t said this about other situations,
I believe we are in really good hands. Cedars Sinai
and these physicians have an excellent reputation.
That and my informed questions and proper responses to
the answers are what we can do, physically, to help
her.

And now I want to ask all of you to pray for and think
of her tomorrow, Monday morning. We check in at 7:30am
and, at some point later, they take her back. People
are always reminding me to take care of myself. I’ve
found that this is often a spiritual thing, even if
I’m just going for a run to keep my first heart attack
at arms length. I’m thinking that one great prayer is
the one where you take extra good care of yourself (on
Monday morning) in honor of Uma and, of course,
yourself. Do something beautiful for yourself or
because of yourself and send that love past Uma on the
way to its final destination. For what it’s worth, I
truly believe all the people who helped in this way
saved her life. I believe in it and I believe in you.
Thank you.

Recently Erik sent an email with video links to people
who donated to Uma. I don’t think he’ll mind if I send
the link to everyone. So here they are....

http://www.youtube.com/watch?v=lNPsSaG7nMw

http://www.youtube.com/watch?v=jbINlKh8fbU

http://www.youtube.com/watch?v=UY1wYo5Ti38

http://www.youtube.com/watch?v=p_ejiZyF--g

http://www.youtube.com/watch?v=pHsrhSQo_XA

Also, I’ve set up a myspace page for Uma that is
including photos and video of her progress so far. As
often as I can, I will update this.

http://www.myspace.com/umaspace

Thank you for Monday.

Love,

John

uma thanks

I sent out a long email thanking all of the people who made donations to help pay for the air ambulance that brought Uma home in March, and I want to post that email below. Also, Uma has to go in for an angiogram on Monday, and there's a possibility that she might need to have her aneurysm coiled again, or clipped. There's more info about that at the bottom of this post, but please think some good thoughts for Uma on Monday. Say a prayer, light a candle, do what you do. Maybe I'll send out a specific task on Monday morning.

Okay, here's the email:

We're sending this email to all of the incredibly generous people who've made donations to The Uma Fund. (As well as all of the people who have helped in so many other ways—with your prayers, your research, your food, your visits…) All of your support has been so incredible, so inspiring, so awesome--so we want to thank you.

We cannot say those words enough. With all of our hearts: thank you.

This email of thanks is long overdue. I've been meaning to send it out for months, but I guess things happen when they're meant to happen. The other day I asked Uma if she'd like to thank all of you herself—via video—and her eyes lit up. "Yes." She is very aware of all of the love and support you've given her, and she wants to express that. She wants to thank you for all of your prayers, your love, your support. At the end of this email, I've posted five short videos of her expressing these thoughts to you in her own words.

A quick health update: Uma's doing really well. On March 12, she was transferred via air ambulance (thanks to your donations) from St. Vincent's in NYC to Rancho Los Amigos in California, to begin her rehabilitation and therapy. At that time, she wasn't able to speak at all and she had very little movement in the right side of her body. On April 17, she was discharged from Rancho to go home with her fiance, John. At that time, she was able to walk with a cane and speak some words (mostly just "yes" and "no," and a few other phrases). Since coming home, she's been on a rigorous therapy schedule—she has speech and physical therapy for several hours every day. Again, this would not have been possible without the donations you made. The out-of-pocket bills for therapy are about $600 a week—Uma and John have been able to pay these bills with the extra money that was raised for the air ambulance. So thank you for that.

Uma still has a long road of therapy ahead of her, but she is determined to continue working until she gets all of her speech and movement back. You can see for yourself how well she's doing in the videos below. (We filmed five videos and I think Uma's a little bit embarrassed by them—she sees herself struggling for the right words and she wishes that she could say EVERYTHING she wants to say RIGHT NOW—but she's making steady progress in the right direction and I think you will see in these videos how far she's come.)

Okay, enough of my blabbing. These videos are from Uma, to you.

Video #1 (56 seconds long)

Video #2 (7 seconds long)

Video #3 (37 seconds long)

Video #4 (44 seconds long)

Video #5 (1 minute, 42 seconds long)

With thanks and love,

Uma, John, and Erik

P.S. – Uma is scheduled to have another angiogram on Monday. It turns out, when they coiled her original aneurysm in February, a portion of the aneurysm that should have been contained within the coil basically broke through and has been bulging out ever since. The doctors in New York failed to mention this incredibly important piece of information to the doctors in California, but thankfully John was looking over her medical charts and he saw this for himself. On Monday, Uma's new doctor is going to look at this portion of the aneurysm and decide to treat it in one of three ways: (1) if it's really small, nothing will need to be done; or (2) if it's slightly bigger, it might need to be coiled, which is the same procedure that was done in New York—it's not incredibly uncommon, but it IS an invasive procedure--they would do this on Monday during the angiogram; or (3) if it's really bulging out, this portion of the aneurysm might need to be "clipped," which is a fairly big procedure and would be scheduled for another date. ("Clipping" the aneurysm would require shaving Uma's head again and making an incision into her skull to get directly at the aneurysm--something that's not required in the coil procedure.) In all of the above three scenarios, Uma is going to have to spend a few days in the hospital. She's kind of nervous because this is the first time she's had to go in for a procedure since she's been conscious of what's been going on with her brain. So please send her good thoughts and keep her in your prayers. Thank you...

p.p.s. If you know anyone who might not have been able to donate in March, but would still like to make a donation, we are still trying to raise money for Uma's therapy. Our funds will last for several more months, but we expect that Uma will need therapy for at least a full year. Donations can be made via paypal HERE.

p.p.p.s. THANK YOU!

latest Uma update from John (7/12/07)

FROM JOHN (7/12/07):

hello again everyone,

i've been busy! but i've been thinking about how all
of you prayed and thought and meditated and walked and
vandalized and wrote and donated and called and
visited and cooked and cleaned and walked and
tried.....and i feel like i really need to tell you
all what's going on with uma on a regular basis.

life is very strange compared with what i've been lead
to believe it 'should' be. it is what it is i guess
and you react as best you can to what is in front of
you. for a long time i thought the adjustments to our
new life together would be more difficult for me than
for her but the more aware uma becomes of her
situation and the more she can actually do the more
she is prone to being depressed or resigned to her
current abilities. getting her to do things for her
own therapy on a self-motivated basis is not so easy.
the great thing about her is that, if you do give her
a task, she will do it all the way and won't stop
until she can do it right. when i said this was going
to be a long, long recovery i truly meant every word.

today was the last day for a while that our home-based
physical therapist (robbin, the associate professor at
usc) will come over. she is due to deliver her second
child on july 20th so.....you know....time for a
break. i've recorded a lot of video to use as
reference for our home program. i feel confident now,
after 2 months, that i can duplicate the exercises.
part of this confidence comes from the fact that uma
doing so well and can respond to commands and
understand the reasoning behind subtle changes in,
say, position or muscle/movement emphasis.
we continue to go to a hospital-based speech and
physical therapist each three times a week.

a typical day is - get up about 8. uma dresses herself
while i make breakfast. we eat, usually while watching
a tv show she likes (dawson's creek or something like
that). i put in her contact lenses for her (but she
has to say, "contacts" before i do it and this is a
very hard word for her right now) and tie her shoes.
she gathers up her purse and we go to glendale for
therapy. there she spends a couple of hours back to
back with speech and physical therapy. both therapists
are very happy with her progress.

much of the speech therapy revolves around reading and
comprehension. there are flash cards with pictures to
name-many of which she can name already without any
cue-ing- and very short stories to read and answer
questions about. she can't actually read aloud nor can
she yet say any of the words individually that she
sees on paper but she somehow gathers the meaning of a
sentence and can refer back to it when answering
written questions about the content of the story. she
'says' she feels like it's cheating because she gets
to look at the story text while answering the
questions but, in the end, it's all reading and
understanding and that's what we want. but that shows
her spirit - she wants to do it right.

physical therapy usually begins with the stairstepper
- up to 85 pounds the other day - for ten minutes. the
last time she did the stair stepper she held on to the
railing with both (yes, both) hands. no tape, no
cloth, no assisting. this happened on a day when she
also made a lot of headway in the 'weight-bearing'
positions they want her right arm to be in. the more
weight her arm/hand can bear, the more it will wake
the brain up in that area......then she will walk
sideways, backwards, up and down a small staircase,
etc.....do hamstring lifts with ankle weights or
repeatedly lift her right leg out and balance - lots
of different leg excercises. then there is right arm
stuff including massage and movement. (i'm hoping to
get together a myspace page detailing a lot of this
activity and uploading videos of her progress - she
said that would be ok with her). last evening in our
tiny little pool she was sitting on a lawn chair and
raised her right arm up on it's own to land on the
armrest, and, with help from her left hand, spread her
right fingers out and over the edge of the armrest.
this is the first time she's done anything like this
herself. that she'd be interested in it, think of it,
and be able to do it is a great sign and is also a way
to bear weight.

....then we would come home, i'd make lunch, we eat,
usually i do the dishes and then we begin a routine
that takes up about 25 minutes an hour each hour until
dinner. this routine varys from hour to hour but
includes speech therapy from her work book - reading,
alphabet flash cards (she can do A, B and C
consistently so far), pointing to objects in the room,
mimicing me while i say, "poe, toe, boe, woe, no, low,
so, zoe, koe" etc. - some of these are easier than
others for her. it also includes upper and lower
extremity stretching and range-of-motion, standing and
seated calf and toe raises, isolated quadricep and
hamstring exercises using the wall and a basketball (
look for the video.....soon i hope), exercises for
external rotation of her arm, wrist movement, pushing
and pulling with various devices (arm stuff), etc.
then, every other day we drive down to the fern dell
at the bottom of griffith park and walk up to the
observatory and back - takes about an hour....come
home, hop in the little pool and talk.....she takes a
shower, i cook dinner, we eat and, pretty soon, she's
asleep. and the days go on like this. i'm taking a
lot of time off work the next few months so we can
intesify her regimen. she's ready, i can feel it. the
catch is that, the more she can do, the more she
realizes what she can't do. but, also, the more she
can do, the more she wants to work.

with days and evenings like this ( add in work,
cleaning the house, grocery shopping, laundry) and
you can see why it's been so long since i've written.
i'm sorry about that but i just get so tired at night
which is about the only time i can do it.

she can answer the phone now and have a bit of
conversation, too so, those of you who have her
number, give her a call and maybe ask her when you can
see her if you want. that would be great.

all my love,

john

a phone call

I just talked to Uma on the phone for eleven and a half minutes! She's doing really good. Fuck, that was an exciting phone call. I'm just jazzed about it. We talked about how absurd life is, and about the future, and about some family stuff. And we didn't really have to play the "guessing game" at all--she was finding so many more words than even the last time we saw each other, which was on Saturday.

That felt so good. I had to share.

raising money to pay for Uma's speech/physical therapy -- help with your VOTE, not with money

Please go to:

THE ROBIN HOOD FUND

and register with the site, so you can vote. It's super quick and easy. Once you've registered, please vote for Uma at the following link:

VOTE FOR UMA HERE

The voting is based on a star system. Please give Uma 5 stars! The winner gets 500 bucks. If Uma wins, the money will go towards her therapy bills.

Thank you kindly.

*

In other news...

FURTHER PROOF THAT I AM A SIXTEEN-YEAR-OLD GIRL:

My current two favorite songs are

(1) U + UR HAND by Pink

and

(2) GIRLFRIEND by Avril Lavigne

True story.

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

FROM JOHN:

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
that.

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
love.

Bye for now,
John

Awesome Possum

John just sent me this video. The quality isn't great (it's pretty dark), but what you CAN see in this video is what's important: Uma lifting her right arm (which, for the last few months, has been almost completely immobile)

Before seeing the movement in this video, I'd only seen her move her right arm with the tiniest of movements--this arm lift is HUGE.



She gets stronger and stronger every day!

Uma update from John, with a couple of questions

FROM JOHN:

Uma 5.23.07

Hi again everyone,

Thank you for the replys to my email. It’s nice to
hear from people.

Yesterday in physical therapy (according to Marie who
took Uma there) Uma turned her right wrist over a few
times and moved her right upper arm away from her
body. And last night she simultaneously squeezed my
hand and flexed her bicep.

We walked well over a mile yesterday. This is good for
her because it builds up her endurance and muscle
tone. I question a little bit whether it’s good for
her walking form though and will ask the PT on Friday
about. The reason being that, like practicing a
musical instrument, what good is practicing for hours
if you’re not exercising proper form or technique? or,
in this case, does the form and technique evolve as
her brain heals and circumvents the damaged and dead
areas? I’ll try and find out. It may just be one of
the many “unknowns” of this whole challenge.

I have some questions for anyone out there who might
know. They are:

what is the benefit/risk, if any, of accupuncture or
accupressure for paralysis/brain damage?

What is the benfit/risk, if any, of hyperbaric oxygen
treatment for stroke/brain damage?

Are there any health insurance programs for small
businesses (two people)? Do they require information
about previous health conditions?

Uma’s condition improves a little every day. One of
the side effects of this is that she becomes more
frustrated and angry. More awareness = more awareness
you know what I mean?

But yesterday on our walk her awareness showed itself
in that she didn’t just plow through and keep going in
her sort of wobbly struggle. She slowed down and even
stopped a couple of times to think about the placement
and shape of her right leg. She pointed to it and
asked, loudly, “Why?!” I answered every question I
could think of with the fewest words possible followed
by several tons of encouragement and a review of the
history of her recovery since we got home.

She’s great. I’m lucky.

I really do believe that every thought and prayer and
expression of love counts for her. Thank you.

john

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

a quick post about various random things and Taye Diggs' ass

I'm sitting here with Uma at her place right now. John had a music gig today, so Uma and I have been hanging. We had a long (good) day, out and about in the world (we went to the Glendale Galleria, and then we tried to go to see Disturbia, but we both thought the movie was super boring and we ended up walking out midway through) (but even though we didn't finish the movie, it was still Uma's first trip to a movie theater since her damned brain aneurysm, and that was pretty cool), and now we're both sitting at our respective lap tops, checking email--which is pretty damned cool, too.

*

Okay, I started writing the above blog post, but then Uma and I got sidetracked by a little game that we like to call 100 Questions. (Marie coined the name of the game.) Uma read an email from my step-dad and she wanted to reply to the email, but she's still kind of flumoxxed by keyboards, so she had me type out the email for her. She had something very specific she wanted to say in her reply email, but she couldn't express what it was...which is when the 100 Questions game kicked into gear. Anyway, Uma was incredibly frustrated, but after an hour (YES, AN HOUR), I finally figured out that she wanted to thank Joe for the column he wrote about her. She was very relieved when we finally figured out what she wanted to say. (And Urp, I'm sorry it took so long, but at least we figured it out!)

If you've sent Uma an email and you haven't gotten a response, this anecdote should help explain WHY it's taking so long for you to get a response--most likely, Uma hasn't even read your email yet, because writing reply emails are sometimes such time consuming things! Anyway, we finally figured it out and Uma and I were both incredibly relieved and now I'm too tired to write a more complete blog entry. I'm just gonna go ahead and post this though because I have been neglecting the blog and I feel guilty about that.

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Oh, on a completely unrelated note (and when did I ever care aboout segues on the blog anyway?), I have such a crush on Boo from the latest edition of Survivor. Like, a HUGE, massive crush. I wanna have his babies. I wish he had won the million dollars. He totally should have because he managed to get hotter every single episode and that MUST count for something, right???

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I've received 4 theater rejection letters in the past seven days. I actually LIKE getting rejection letters because (1) a lot of the time you submit your work somewhere and you don't ever even hear ANYTHING, so at least a rejection letter lets you shut the book on that particular submission, and (2) you've gotta go through a lot of rejection in this business, so every time I get a rejection letter I figure that means I'm one step closer to another production, another YES. (As a sort of bonus, the four rejection letters I've received this week have been some of the most positive rejection letters I've ever received, so they managed to crush my soul and feel happy about it at the same time.) (Just kidding about the "crush my soul" part, I'm made of stronger stuff than that.)

*

Taye Diggs is naked on TV right now and Angela Bassett is totally rubbing his butt.

latest Uma update

(I'm sorry I haven't posted in two weeks!) (many apologies!) (life) (but I'm gonna try to get back to being regular again.)

Dear friends and family...

It's been a really long time since I've sent out an Uma update—-about two weeks, actually—-and I've started to get worried emails from people—-asking me if everything has been okay—-so I realized that I need to get back on the ball with the updates. John wrote an update last night and his update describes Uma's daily routine pretty wonderfully, so I won't go into a lot of detail, but suffice it to say: every day she gets a little bit better, every day her walking gets a tiny bit more assured, every day she gets out a new word. So I'd say she's doing pretty amazingly.

A quick anecdote: I spent a few hours with her today while John was working in the studio with Ken, and we decided to go for a walk. Uma and John usually go on a walk in the morning—-down the street to get coffee—-and Uma sometimes goes on walks in the afternoon, so this wasn't anything new for her, but this was the first time I'd gone on a walk with her, so I was excited for us to venture out into the world together. I knew that the longest walk she'd been on so far was to Franklin and back—-which is 6 blocks each way, so: twelve blocks. Okay. So that's what I figured we'd do.

Uma and I started out on our walk and Uma was very confident. She didn't even need to use her cane. (In fact, when I asked her if she needed it, she gave me SO MUCH ATTITUDE, as if to say: "haven't you been paying attention? I don't need to use that damned thing anymore.") As we walked down the street, I flashed back on her days at the rehab facility when she was taking her first difficult steps...that was just over a month ago—-and then I flashed back on two months ago when she couldn't even move her right leg AT ALL—-and here she was walking through her neighborhood—-without a cane, without anyone's help—-walking so well. I don't want to overuse the adjective "amazing," but I can't think of another word right now.

When we got to Franklin, I told Uma it was time to turn around, and she said "no," and then pointed ahead. She wanted to walk further. "Okay, let's go," I told her. So we walked another block. And then when we got to the end of that block, I told her it was time to turn around and head back. "No," she told me, and pointed ahead. I told her we should really probably turn around, but she was adamant. So I gave in: "alright, let's go another block." So then we walked another block, and when we got to that next block, Uma was excited and enjoying herself and totally into the walk…so we went another block. By now we'd walked a total of nine blocks and Uma finally decided she was ready to turn around. So then we started heading back and by the time we got back to Franklin we'd walked twelve blocks, which was the longest walk Uma had been on so far, and by the time we hit block twelve...

...Uma was tired and so completely ready for the walk to be over. But she had insisted on walking further, so now we still had six more blocks to walk. Uma asked me, "when?" I finished the sentence for her: "When are we going to get home?" "Yes," she said. "We have six more blocks to go." Then Uma asked: "Why..." And I finished: "...why did I let you bully me into walking those extra blocks?" Uma laughed: "Yes."

Those last six blocks were tough. Uma was exhausted, so we'd walk about ten feet, then we'd take a break.

Have a sip of water.

Stand in the shade for a beat…

...and then we'd move forward another ten feet.

Then, again: pause, water, shade, then walk. And again: pause, water, shade, then walk.

Literally taking the rest of the way home in these little ten feet intervals.

As we walked those last few blocks, Uma started getting frustrated, tired, cranky, but we were almost home. We just had to get over the bend. (I know this sounds like some parable, but I swear to you there's a little hill right before you get to their house, so we LITERALLY had to get over one final bend.) We took one final break in the shade, one final sip of water. And then we continued on. Until finally—-finally—-we got back home and took our shoes off. Then Uma got into bed, ready to rest.

Anyway, (and this is parable time, for real) as far as Uma's speech therapy goes, I kinda feel like Uma's at the beginning of walking those last six blocks home. They are LONG blocks she still has to walk down—-who knows how long it will take for her to get all of her words back-—it's probably going to take a really long time. But every day she moves a couple inches forward. The thing is, she seems to comprehend everything that's going INTO her brain, but her words need to find new pathways to GET OUT, so it's kind of like she's learning how to speak again one word at a time. Which is tough, and grueling, and frustrating. But eventually she IS going to have all of her words back. I know she is. She's just gotta keep moving forward in these little intervals, and eventually she'll be "home" again, in every sense of the word.

Thank you for all of your continued love and prayers and good thoughts for her.

Here's JOHN'S LATEST UPDATE...(5/6/07):

hello everyone,

it's been a long, long time since last i wrote. in an
explanation of why i haven't sent an update in so long
i can start by saying that i now have an entirely
differnt brand of respect for my mother and father.
as the person who gets the therapists, sets the
schedule, sets the alarm, makes the breakfast, helps
dress her, gets her to the therapists, makes lunch,
does the laundry, the dishes, makes dinner, helps in
the shower, makes music on the side to pay the bills,
and gets her medication ready, i now see a little bit
of what it must of been like for my mom and dad who
both had full time jobs and took care of us three
kids. this is love on a different level. it's love
in action and it has left little time for words (or
anything else) lately.

we've been out of rancho los amigos national
rehabilitation center in downey for about 2 and a half
weeks. of the many things she can do now that she
couldn't do then are - reach down and pick up things
from the floor, carry dishes back into the kitchen,
get things into and out of the frig, wash some of her
dishes, put toast in the toaster, answer her cell
phone and have limited conversations, change the
channel on the tv, walk up the stairs without dragging
her right foot on the lip of the stair.....etc.
there are almost too many things to tell about.
there seemed to have been a plateau upon getting home
but that turns out not to be true.

to have seen her go, literally, from not even seeing
me to walking out of rancho with a cane on her way to
her first in 'n out burger in months marked a
progression of amazing speed. but now the progress is
measured differently. whereas she has been able to
ambulate with both legs, now she is working on the
finer details of what walking means. she must
reconnect with the muscles that her brain has
forgotten about. this is a deeper level of brain
activity than the gross movements we saw at rancho.

just about everyday she says something, some word that
she didn't say before.

usually she can move her fingers on her right hand a
little each day.

i honestly don't remember how this differs from the
last email i wrote but the difference for me is that
she is more 'there', more aware and present each day.
we were walking back from dinner tonight (!) and i was
checking in with her about how best to spend the
fundraising money on her recovery. a few minutes later
a fellow musician friend of mine named ken lasaine
was walking towards us. we greeted each other,
exchanged some words and moved on. i told uma, again,
about the fund raiser and emails and life-changing
activity people have undergone learning about
her....and i mentioned that he, ken, had donated to
her fund. well, THIS time it finally hit home with
her just how much has taken place in this regard. she
just kept on saying, 'wow!' almost until we got home.
she was truly amazed and overwhelmed by this. the
thing is, i have told her about this on numerous
occasions but never has she reacted this way to the
news. she is amazed. she is overwhelmed. she
understand what you all have done for her.

we have hired two out of probably only 7 physical
therapists in southern california who not only have
doctorate degrees in the field but who are also
neurologically certified. since the gap in time
between rancho's in- and out-patient programs was so
wide, we have so far, decided to pay for pt and st at
glendale adventist hospital. the speech and physical
therapist there are really good matches for uma - they
are really good (if i'm any kind of reluctant expert
now) and really nice and really tough and true in
their vision of her path to recovery. we see the
speech and physical therapist there 3 times a week
each. we also have hired an associate professor of
physical therapy from usc to come to our house twice a
week. both pt's are co-ordinating with each other to
maximize her work. so....by saturday, uma is pretty
worn out....but today, at her suggestion, we ate
breakfast (eggs scrambled with asparagus, tomatoes,
onions and garlic with toast) on the front porch
(first time ever) and then we went to the beach. she
is really waking up.

we've been back to rancho for a physical therapy
out-patient evaluation but the program for her
wouldn't start for another 6 weeks. her speech
evaluation was performed by someone who, honestly,
didn't do a good job. having been through so much in
terms of different therapists and in interviewing and
being evaluated by a number of therapists i've learned
a little bit about what the job(s) mean. of the three
speech therapists we've seen since she left rancho,
two of them were truly prepared, worked in really
efficient and penetrating ways with uma and got really
amazing results from her. the third was from rancho.
long story short, we've decided to use the fundraising
money by hiring the therapists we have now. they are,
in my opinion, the best for her and her recovery. we
have enough to last us about 8 months of 8 therapy
seesions (5 physical, 3 speech) per week. this is a
LOT of rehab but she is determined to recover all the
way. i just wanted everyone to know how this is
going and, in a way, how your donations are being
used.

uma loves being at home. our routines are nicer now
than a few weeks ago and they change everyday because
she can do more everyday.

i've never been through anything more life-changing or
exhausting or that has elevated my gratitude. but i
feel like i want to begin writing about her again -
or, at least, i feel like i have the energy. i don't
think i can do it every night like i did before but
i'm going to do it at least once a week. i think erik
is going to begin writing again too.

so many thanks to all of you.

all my love

john

some Uma love

FROM BONNIE:

"I wanted to let you know that the showcase I'm producing is doing its curtain call to HEY YA in honor of Uma. It's even a blurb in our program that we want all in attendance to dance for Uma during our curtain call. So... Just wanted to be sure you knew there are at least 40 people on stage three nights this week (and another hundred in the audience each night) all dancing FOR UMA."

Thank you for continuing to spread the love and goodwill, Bonnie!

An Uma update from my mom, 4/20/07

(the above photo of Uma and my mom--Sherry--was taken on Mother's Day, 2006)

I JUST GOT THIS UPDATE FROM MY MOM:

How wonderful it is to be able to visit Uma at home instead of in the hospital. I had my first opportunity to hang out with her at home yesterday, and it was very special. Colleen was there when I arrived, and John was in his home music studio working. Colleen left and Uma and I got cozy in the bed to watch a DVD that I had brought—“Ever After.” I was in the mood for a fairy tale, and Uma seemed to like the idea, too. So we watched the movie while John worked in the next room, and we took turns dozing since the plot was too familiar to keep us awake when we were both a little sleepy. As we watched, Uma had her right arm in the removable cast that she wears as much as possible as part of her therapy. It can get very uncomfortable for her, so it was great that she was able to keep it on for several hours.

After the movie, we talked—mostly about movies and TV shows, but also about other things. At one point, we talked about “Grey’s Anatomy,” and I asked her if she was going to watch the new episode that was on last night. She started to explain and couldn’t get the words out and appeared very frustrated. John came in and started asking her questions. He has a way of helping her express herself that no one else can match. We figured out that she really wanted to watch Grey’s, but also really didn’t because she had missed several episodes and didn’t want to watch them out of order. At one point in our conversation, she said, “I want to watch…” She often gets stuck after “I want” so it was good to see her forming a sentence.

Another time when I was trying to get her to repeat a sentence, John came in and counted with her to three and then she said it perfectly. The counting gives her time to prepare, and then she does much better. She is best able to form words and sentences when she watches the lips of the person she is talking to. At one point, she said the word “scenario.” I wasn’t sure what she was trying to say, but it’s clear that she’s working hard at it and the words are coming to her. They might not be the right words for what she is trying to say, but it is a start.

In response a look of frustration from Uma, John explained to her that he and everyone else can see that she is an intelligent woman and the same person she’s always been—that she just needs to work at being able to once again express herself through words. The way he explains this is so loving, so patient, yet also gently demanding. He stops her when she is frustrated and looks into her eyes and offers reassurance that he understands her plight and will be there to help her through—but also reminds her that she has to work at it no matter how frustrated she gets.

Toward the end of my visit, Uma’s friend, Lauren, arrived with a tray of cupcakes. I said goodbye to Uma and left feeling rested and grateful for the time I had spent with her. Uma will resume serious therapy next week, and she is getting some much-needed down time during her first week at home. John says they are sleeping well without all the interruptions and noises that invaded their privacy in the hospital. John is trying to get back to work while tending to all of Uma’s needs and making arrangements for her therapy. I worry about him because the role of primary caregiver is so exhausting, even when you get back as much love as Uma gives. There is also the tremendous sense of responsibility for so many things, from making sure she eats well and gets the quality of care she needs to making sure the bills get paid. We need to help John keep his strength up so he can help Uma keep her strength up, because no one does that better than John. I think he will ask for help, but probably not as much as he should. He needs quiet time alone with Uma, and he needs time to be away from her to do his work and time to be away and restore himself by doing whatever helps him to re-energize. I say this to direct your prayers and positive thoughts toward the support that John and Uma need to get through this healing process so that she can be fully recuperated in every way. We have already seen what can be accomplished when so many people pull together in love and hope—Uma has come so far with that power behind her, and I know she will keep making progress every day because she is surrounded by so much love and support and is very determined to reclaim her independence.

Joe's column about Uma

My step-dad has been writing a weekly column in the Orange County Daily Pilot for the last few decades, and today's column is about Uma...I thought I'd reprint his column here for y'all...

(the above photo of Uma and Joe was taken last August, at my birthday dinner)

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THE BELL CURVE:
Courage and hope despite odds

By JOSEPH N. BELL

My dear friend Uma Nithipalan went home last Tuesday, 77 days after she got on a plane in Los Angeles to fly to New York and join her husband-to-be who was awaiting her there for a brief visit. Twice in those 77 days, the people who love her were told that Uma had only a 20% chance of ever making that trip home alive.

But medical opinion turned out to be no match for the wave of prayer and love that washed over her.

The love came from hundreds, maybe thousands, of friends of Uma who met her and followed her story in the blog of my stepson, Erik Patterson.

This cornucopia of hope and, finally, conviction grew daily, first among Uma's dear friends. But very quickly, they told their friends who told their friends who told other friends, all of whom seemed to find in the courage and determination of these three young people a reason to look — even if only for a few moments — beyond the horrors taking place in our world today to a crusade anchored in the certainty that a reservoir of goodness remains, with the power to bring about results that could be seen as miraculous.

Uma is a native Sri Lankan and a citizen of the world who graduated, with Erik, from Occidental College in Los Angeles eight years ago. Uma was Erik's closest friend then, and she has remained his closest friend ever since. And when Uma fell in love with John Ballinger last year, John became Erik's second-closest friend.

That's the way it was when Uma got on the plane to New York last Jan. 30 to celebrate the engagement ring John had given her at Christmas. John, who is a fine and versatile musician, was playing a gig in Manhattan with the troupe that took "Dancing with the Stars" on the road. It was a job he wanted badly and was enjoying immensely. And it paid him well enough to bring Uma to New York to share it at least briefly.

John was working when Uma arrived at his hotel, but she was waiting in his room when he finished and hurried to her side. And a few hours after that joyous meeting, before the morning light, this wonderfully healthy 27-year-old woman was in convulsions, writhing in pain, gasping for breath.

An ambulance rushed her to the nearest hospital where five precious hours went by before she was diagnosed with a brain aneurism and transferred to another hospital equipped and staffed to treat her.

Thus started the journey of these three remarkable people.

A few hours after John called him, Erik was on his way to New York. He had joined John at St. Vincent's Hospital when the first desolate news was delivered by the doctor heading the team that treated Uma. She was in an induced coma, he said, critically ill, with, at best, a 20% chance of surviving.

That's when the two men in her life, staggered at first by the news, decided that they simply would not allow it to happen. And from that moment until she went home last Tuesday, one or both of them were constantly at her side. And so were the prayers they pleaded for in the long, poignant e-mails and blogs they sent daily to the folks back home. Always factually straight. And always upbeat. "Here are the facts," they seemed to say, "but the reality is Uma's full recovery."

That's the way it was through the first three weeks.

One minor setback after another, somehow dealt with.

But always there was the fear of stroke attacking her nearly defenseless body. If only she could get past that, they could all relax a little. And they almost had it made when stroke abused her body once again — and once again the doctors delivered the 20% lifeline of hope. And so the volume was turned up on the call for help, and the response was quick and sure. Uma fought off the grim predictions, resumed her recovery, and a little over a month ago was on her way back to rehab in Los Angeles.

That required a new miracle. Only an air ambulance could deliver her, and that cost more than $20,000. So Erik fired up his blog and told Uma's army the problem — and within four days more than enough money poured in to pay for the air ambulance. So now, after four weeks in a rehab facility, Uma is walking with a cane, communicating with beautiful smiles and nods and grimaces as she relearns speech a word at a time, expressing a range of emotions from frustration to joy, and flashing wonderful glimpses of the old Uma.

It's impossible to convey the almost lyrical flavor of the hope and love and determination in the reports that came from John and Erik every day since Uma was stricken. They could and should be edited into a fine and inspirational book. Here's just a taste from John, written when he went home for the first time in several months, after he and Uma returned to Los Angeles:

"I look around our house and see all the physical things that make up our life together — the little things like a receipt for a dinner we had, the new spice rack she bought while I was on tour, notes on the refrigerator, photographs that she put up on the wall, the Christmas tree she hadn't taken down and where she left her nightgown before flying off to New York.

"Her essence and personality seem very much to be there and intact. Her sense memory of me and trust in me seem to be just as present. But exactly where are her memories? Will she remember any lines from the play that won her an award from LA Weekly? Or how long it took her to breathe again after I asked her to marry me? And does it really matter? Maybe the essence of things is what I will lean on for a while.

"Her rehabilitation will take place for many years in some ways, but the bulk and the foundation of it will be done over the next four months to a year. So I'm asking again for your spiritual help for Uma. I really believe she has come this far due to the prayers and love sent her way by all of you. And she needs this again, just as much as before."

I was privileged to be among the people who love Uma and received the daily reports from her bedside.

A few days before she returned home, I visited her at the rehab center and reminded her of an inside joke we shared. And her eyes lighted up and met mine, and her smile was broad and understanding, and I thought of the final sentence in one of John's latest reports: "Tomorrow," he wrote, "is Easter, and Uma will rise up and walk."

Home, Sweet, Home...and some things to visualize re: Uma's speech

So...Saturday night was the practice night at home...Uma still had to go back to the rehab facility for two more nights...but now she's officially checked out and HOME!

The latest update:

I just got home from spending the evening with Uma and John AT THEIR HOUSE (because Uma is HOME, finally!) (as in, NO MORE FREAKING HOSPITALS), and I was about to write an Uma update, but then I got John's update, and he says everything I wanted to say. So please read his email below. I'll just add a couple of thoughts:

(1) Hanging out with Uma at her own home after so many days of hospitalness is one of the greatest things in the world.

(2) It's been a while since I've asked you all to visualize anything...keep visualizing her brain finding new pathways to get the words out. It has become very clear that Uma DOES have her memories and that her personality is intact--which is one of the big things we've been praying for--and I can tell you that Uma is Uma, inside and out, in all of her wonderful, snarky, loving, Umaness. The final piece of the Uma puzzle that Uma needs to express all of her Umaness is, obviously, her words. I've been working with her on her speech whenever she'll let me. I've been trying to make it fun, or if not fun, to make it at least not seem like "work." To make it as casual as possible. Because working on her speech gets really frustrating for her and it's taxing and she only tolerates it in short bursts. Basically where she's at with her speech is:

(a) She comprehends what is being said to her and she can give very definitive "yes" and "no" responses.

(b) She can starts sentences: "I want..." "You want..." "We want..." "It's like..." "No, but..." etc., but she can't yet finish her sentences.

(c) She can read and comprehend written words.

(d) She can read written words aloud. But sometimes it takes her a few times to get them right. Life, for instance, we were reading the months of the year and she read "February" as "Debuary," but then we worked on it and she got out "February." Using the dry-erase board, and working with Uma for about forty minutes, I heard her say every day of the week, every month of the year, several names of friends, names of several restaurants in Los Feliz (I asked her which restaurant she most wants to eat at in the area, and she chose the Edendale Grill), as well as some sentences that I had written on the dry-erase board. Sometimes she'll get stuck on a word. Like, she got "Monday" down really well, and then we moved to "Tuesday" and she said "Monday" again. But she knew it was wrong and then she got that look of "ooooo I'm so frustrated" and I said Tuesday for her and she looked at my mouth and watched how the movement worked and she got "Tuesday" out. One of the tricks I learned from her weekend speech therapist at the rehab facility was to help ease her into saying words by giving the word a build-up. For example, if you ask her what color the sky is, she has trouble finding the word out of nowhere. Like, the words in there in her head, but her "word file" is all scrambled and so she gets frustrated because she has no idea where that word is, and she keeps thinking and the more she thinks the more lost that word gets. Like when you can't find your keys and you look all over the house and then thirty minutes later you find your keys on the dresser, which was the first place you looked. Her words are sitting somewhere in her brain and right now she's looking all over her damned brain to find them, and when she eventually does find them it'll be like, duh, they were right there all along. She also has trouble repeating words sometimes. She hears what you're saying and she knows the word, but mimicking and repeating that word back to you isn't always the easiest thing. BUT, when you saying something to her like, "red, white, and...," she can finish the phrase without skipping a beat. She'll say "blue" very clearly and fully. Much more easily than if you were to ask, "what color is the sky?" Anyway, we were working on days of the week and I was trying to say things that would fluidly lead to a "fill in the blank" moment with each day of the week, and the phrases I was coming up with were kind of pathetic, but Uma and I had a really nice moment with "Sunday." I asked her to think about "that one U2 song," and then I started singing "blahblah bloody blahblah...blahblah bloody blahblah" and she laughed at me, but she knew the song, of course, and then she sang with me, "Sunday bloody Sunday...Sunday bloody Sunday..." She sang each word completely perfectly and clearly, and she even sang the words with perfect pitch and melody.

Hopefully that gives all of you a really clear image of where Uma's speech is right now and the kind of progress we want to visualize for her in this area. Visualize Uma being able to find the words that she wants to find, visualize those words creating a new pathway from her brain to her mouth, so that she can get the words out without having to read them. Visualize the beginnings of sentences AND the ends of sentences, like, streaming out of her mouth. Hear her voice in your head--it's a good voice, and we're hearing more and more of it every day--let's help Uma continue to push that voice out into the air.

Also, one last thing: please keep sending Uma your loving energy so that she has the strength to get through her frustration. She is massively frustrated about not being able to communicate as fully as she's used to communicating. This whole not-being-able-to-speak-fully thing is still very new to her--we were talking to Uma and we discovered that her clear memories of the last 77 days really begin about two weeks ago. After she had the new shunt, after her ventricles decreased, and after she was finally off a lot of the medications she was on...so, while we've been helping her fight through this brain ordeal for the better part of the last three months, it still feels relatively fresh to Uma and she's still dealing with the newness of feeling like: WOW, I HAD A BRAIN ANEURYSM BURST AND HOW I LIVE MY LIFE HAS CHANGED DRAMATICALLY. Fortunately, I think the thing that keeps Uma strong is that even though so much has radically changed ( i.e. having to relearn how to speak, having to relearn how to walk, etc.), the most important part of her life is still there and 100% grounded and unchanged in his love for her (or, if it's changed, it's changed in a good way--it's grown), and that's John. He's amazing and I am in awe of him every day (and before I go to bed I send him love and energy too, so that he will continue to have the strength to be as 100% as he is).

Much love to all of you, and here's JOHN'S UPDATE:

MONDAY NIGHT:

Hi everyone,

I'm lying in the cot that Colleen Kane loaned to me,
right next to Uma's hospital bed. I've just put both
her night time casts on....one for the right leg, one
for the right arm. She tolerated the leg cast for 2
hours the first night, 3 the next until the pain from
keeping her leg straight and her foot bent at a right
angle was just too much. She can tolerate the arm cast
for about 6 hours a night. We just cut short an
episode of 6 feet under (thank you again Sezin!)
because she was tired. I hear her yawn, the hospital
bed inflating and deflating strategically to prevent
bed-sores, and the noise of the nursing station
through the closed door of her room. This is our last
night here.

The length of each day in hospital is just profound. I
remember, before all this happened, how I would
complain that my days seemed shorter and shorter the
older I got. The last 76 days seem to be my entire
lifetime. This feeling, in a lot of ways, carried over
into our 'over night pass' last Saturday night and
into Sunday.

On Saturday we went home after her therapy was over.
There was a mistake on the part of the doctors and
charge nurse on the previous day in that they forgot
to make arrangements with the pharmacy to get us her
medication and that, although the doctor signed the
order, the charge nurse didn't file it. We had to cut
short our In 'n' Out burger lunch to return to the
hospital for the medication. But we made it home and
later that night I cooked for Uma, Erik, myself, and
my brother Wayne. They all thought it tasted amazing.
I'm not tasting food so well yet. Maybe soon. It was a
really great night. It felt so good to be home. Out of
all the things I thought would be deeply felt by me,
the one that stands out is how wonderful it was to
sleep or sit or cook or eat and feel the breeze coming
in through the open windows. The other feeling that
stands out is how wonderful it was not to have to wake
up and see someone taking Uma's blood pressure or
giving her a breathing treatment.

On Sunday we slept in. I cooked a big breakfast and we
began the 6 feet under fest. It was pretty heavenly I
have to tell you. She was so happy and looked so
peaceful. Lying there in our bed, windows open, breeze
and the sounds of life coming in.

But another feeling I didn't expect was that of being
overwhelmed. In some ways, leaving the hospital is
scary - not as scary as being IN one but
still......She can do very little right now. I will be
cooking, cleaning, doing the laudry, shopping for us,
making all the plans for everything, and creating
anything that needs creating. And by all accounts, she
will be trusting me with all of this. And, almost all
the time, that is comfort enough.

TUESDAY NIGHT:

Now it is Tuesday night. I just couldn't stay awake to
finish last night. We've been home since about 1pm.
She watched TV and napped while I cleaned house and
clothes, made order of all that I could, threw away
MANY things, and napped myself. Erik came over about 4
just as Uma and I were about to have tea on the front
porch. (we've never had tea there.....I just thought
it would be nice - especially since my brother rebuilt
the porch). He joined us but soon I went in to tend
to the business of "follow-up" for Uma. Erik started
working with Uma with the writing board, using
creative ways to cover the spelling, choosing, and
saying the days of the week, months of the year and
what typically happens in those months, phrases common
to americans, etc. They laughed a lot but got a lot
done, too. I went to the market and made dinner for
the three of us: salmon grilled in garlic, butter,
carmleized onions and tomatoes, salad of field greens
and carrots, steamed broccoli and baked red potatos.
Why not, right? It's better than hospital food.

While Erik washed the dishes I showed Uma a notepad
that I found on the couch upon my return to L.A. On it
she had written dozens of notes about her life....like
an outline of the story of her whole life. The
captions were telling and deep, and sometimes very
funny. They spanned from her very early childhood to
now. The amount of words she can say and the clarity
with which she will respond to me made it very easy to
determine that she remembers all of this. Erik came in
and I told him what we were doing and he said to Uma,
"You remember all of this?" She nods and says, "yes,
but...." and I say, "Do you remember everything except
the aneurysm and the New York hospital?" and, before I
even finish the sentence, she says, "Yes". I like
that......."Yes".

So.....there are so many things to do and so much work
to be done for her - her right arm and hand, her
speech, her balance and walking, her sense of herself
and the community, getting the right kind of help for
her in and out of the home, finding a way for me to be
in my life, me learning to manage all of this too,
etc, etc, etc. ......but tomorrow is a day off from
all of it. We are going to have a Kathy Bates film
festival tomorrow. Erik and asked her, again via the
write board, if she wanted a film fest of an actor or
actress? She wanted an actress. He began writing
several names down and I blurted out, "What about
Kathy Bates?" Well....she ended up picking that and
then we listed the more memorable movies she's been in
and Uma and I will go down the street tomorrow
sometime to Jerry's video reruns and get as many as we
can. In between shows I'll do range of motion on her
right arm, make her stretch her right leg and do
resistance exercises with it, cook, eat, nap, etc. and
generall try and ignore the phone.

That being said, visitors are welcome here after
tomorrow. Please email me or call and tell me what
you're thinking of.

There was a man, a father, in the waiting room with us
at St. Vincent's in New York. His 22 year old daughter
was hit by a bus. He updated me via email tonight and
told me they are finally leaving to go to Columbia. He
and I shared a lot of moments together that are simply
indescibable. He and I know something about life that
not everyone does. I wrote back to him, among other
things, that Uma was lying next to me in OUR bed and
that with all the love I feel for her I am praying
with my whole soul for his beautiful daughter and for
him. The tears that came were different than the ones
I cried earlier today. They felt better somehow.

Thank you all for praying for Uma and thank you in
advance for the prayers and love you will be sending
her in the future.

Love,
john

a very nice, relaxing saturday night

I just got home from having dinner with Uma, John, and Wayne (John's brother) at John and Uma's house. YEAH, you read that right. At their house. As in, not the freaking hospital. I have lots of other things to say, but before I get into a full-on post (I'm feeling tired and probably won't write up a new update until tomorrow) I just wanted to shout out to the world because, hello, how awesome is it that Uma is at home with John??? So awesome. We spent the evening hanging out on their couch watching American Idol, after eating a delicious meal of angel hair pasta with chicken and veggies (curtesy of John, the cook). Yes, there's a long road ahead, and Uma's already tired of therapy and frustrated that her words aren't all there yet. But the simple fact that Uma's at home is something to celebrate! Have a glass of wine with someone you love, splurge and order that piece of chocolate cake you weren't going to order, get up and dance. These are truly good times.

Dry erase board "tests"

Uma had a really good day today, lots of therapy and she's making steady progress. During speech therapy, the therapist encouraged us use the dry erase board to write words for Uma because it's easier for her to read them than to have to come up with them out of thin air. So after therapy ended, I spent an hour writing words for her and having her read them to me. She had varying degrees of success with the reading--some words were easier than others, sometimes she'd get stuck on a word, sometimes she's kind of get it but not quite. However, I gave her some "tests" to take on the dry erase boards, asking her to circle certain words and match certain words, and she got every single question right. No help from me, no hesitation. These are all really exciting signs. I took a few photos, these are just six of the tests that Uma got perfect scores on today:

(1) I asked her to match the names of family members and friends with their professions:


(2) I asked her to match specific dates with their significance:

(3) I asked her to match the names of favorite television characters with the names of the actors who portrayed them:

(4) I asked her to match the first names of friends with their correct last names:

(5) I asked her to circle the names of everyone who she's ever lived with:


There were more dry erase board "tests," but these were the ones I took pictures of. She got 100% correct on EVERYTHING i threw at her, even things like "circle the name of the street you live on" hidden within a list of numerous street names. This is so encouraging. We've been worried about her losing memories, but I feel like these little tests prove that a lot of her past is definitely still in there.

Oh, and we watched the Ellen Degeneres show, and when she started dancing we both got jiggy. I took some video. It's crappy video footage because I was dancing while I took it, so it's all shaky, but I'm posting it because I think it's nice to see Uma getting her groove on a little bit.