Thursday, May 31, 2007
Last weekend, Uma and Marie and I had dinner at Brian and Aubree's house (they made the most amazing dinner) (gnoche) (so freaking good) (seriously) (I really like gnoche and this was definitely the best gnoche I've ever had) (though I'm not sure if I'm spelling the word "gnoche" right) (which would be ironic and sad, seeing as I'm watching a kid trying to spell the word "bouleuterion" right now) (ooooo, he forgot the first "o") (I don't know if I can watch this, it's too hardcore) and at dinner (or after dinner, rather) Brian mentioned that I haven't blogged about my bowel movements lately, and so I just wanted to say that I had a really satisfying poop tonight. You know, the kind that wipes totally clean, on the first wipe. So refreshing.
Okay, one of the ousted spellers just made me cry. I need to focus and hope this kid Joseph Henares spells "punaise" correctly.
UPDATE: Okay, now I'm rooting for Matthew Evans to win. He's the youngest person left in the competition and the only competitor to be a veteran of four challenges. It should be his year. Genizah!
UPDATE: Dammit, Evan O'Dorney just spelled "schuhplattler" correctly, and now I want HIM to win, because he come on: schuplattler? Dude so deserves to win.
UPDATE: Okay, Matthew Evans is gone now, foiled by a silent "u" and a silent "d." Now I'm fully on Team O'Dorney. Come on, schuhplattler.
UPDATE: Sorry, scratch that: now I want Isabel Jacobson to win. Epaulement!
UPDATE: Okay...Isabel's out...now we're down to the final two. O'Dorney and the canadian kid...and...THE SPELLING BEE RAN LONG AND MY FREAKING TIVO DIDN'T TAPE THE END. Wow, I'm gonna have to google to find out who won. That's a letdown.
UPDATE: O'Dorney won! Woo-hoo! Winning word: serrefine!
Wednesday, May 30, 2007
In the meantime, I just posted a bunch of new photos on my flickr account.
Thursday, May 24, 2007
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!
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.
Sunday, May 20, 2007
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
....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
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
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.
firstname.lastname@example.org or myspace.com/umanithipalan.
If you want to see a really nice picture of her go to
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
I am so grateful.
Monday, May 14, 2007
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.
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???
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.
Saturday, May 12, 2007
I've been listening to Christy and the NoNos since I woke up this morning (which was only, like, thirty minutes ago) (but they only have four songs on their myspace page, so I've had time to listen to each song at least twice) and I wanted to give them a shout out because they are so damned good. If you live in LA, they're having a cd release party on Friday the 18th, and they give good show. Go.
CHRISTY AND THE NONOS
Singers: Chris Wells, Laural Meade, Polly Segal, Patrice Quinn
Musicians: Fred Cassidy, John Ballinger, Darren Embry
Tuesday, May 08, 2007
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):
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
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