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March 31, 2007
uma update (via blackberry)
FROM ERIK: I'm forwarding John's latest Uma update...I hope this email finds all of you
happy and healthy and well...Also, below John's update, I'm posting some
updated info about visiting Uma, so please scroll down and read if you're
planning on coming to the hospital for a visit. Thanks and much love to all
of you,
Erik
---------- Forwarded message ----------
From: john ballinger
Date: Mar 31, 2007 12:40 PM
Subject: uma 3.31
hi everyone,
i've been at the hospital a lot so have not written.
i'm at home now trying to take a break and recharge. i
can't tell you how great it is to spend the nights
with uma. she slept well last night with few coughing
episodes and i really hope this helps her.
yesterday she had a real-time x-ray swallowing test
which then caused the doctor to change her 'diet' to
eating 3 meals a day or pureed food. she does eat some
of it but it tastes pretty bad for the most part.
whatever percentage she does not eat the nurses
compensate for with the g-tube feeding. the swallow
test revealed that she has some hesitation in
swallowing during which time the food or liquid rest
on the valve leading to her windpipe. the hesitation
is about 3 seconds but she quickly swallows it all
down. seeing this made me realize why they wait to
pull the tracheaostomy. if she were to choke it would
be really bad, bad news. but so far she's had 3 meals
and will have 3 each day from now on, with increasing
textures and solidity.
my perspective on her progress is skewed due to being
there all the time. people who come to see her every
now and then comment very strongly on how well she's
doing and how much she has improved. this is good for
me to hear, because there is really nothing like
seeing the person you love most in the world in this
kind of long-term trouble. i've performed music in
front of thousands of people and under extremely
high-pressure situations on serveral continents on
this planet and there is no comparison to the kind of
pressure i feel with uma's health. i seriously
wouldn't wish this kind of feeling on anyone's worst
enemy - it's a lot to deal with.
to tell you that she gets up from the chair or the bed
or the shower or toilet, that she walks with help from
someone, a cane, and a brace, that she is now eating
and elliminating for the most part on her own, and
that she is beginning to use language again is an
amazing thing to relate but it really doesn't tell the
whole story. in terms of her speech and use of and
memory of language, she is in real trouble right now.
her improvement depends on how well and how much and
how soon she gets great speech therapy. because we
only have four weeks of acute in-patient
rehabilitation and then move to out-patient, we are
all looking into augmenting all of this with private
or 'other facility' help in speech and also physical
rehab. if there is anyone out there who has had any
experience with stroke or aneurysm and private
therapy, please contact me as soon as possible and
tell me what you know. we're going to need a lot of
help here both practically and spiritually. as hard as
any of you have prayed for her to live or come home,
please pray and love her that much again for her
ability to regain that which makes her who she is -
her mind, her memories, her experiences, her ability
to express herself and experience other people's
expressions. those of you who know her know her
sensitivity and intelligence, the depth of her soul
and her 'take-no-prisoners' attitude toward most
things. she fell in love with me hard and completely -
just as i fell in love with her. sometimes it feels
like my entire soul is one expanding and constant
prayer for her. people who visit see her spirit and
personality there, but uma is a person who never was
afraid of the depth of life and meaning. language is
the universal carrier of meaning and, while there are
many ways to communicate, for her, speaking was a true
gift. anyone who has seen her act on stage or listened
to her laugh LOUD about something knows what speaking
means to her. seeing her struggle to find words and
really, truly working hard to reach out to people is
wonderful and heartbreaking. i believe she will regain
much but i know how much help she has gotten from all
of us so far and she will need that again and then
some.
there was a conference yesterday with all of the
doctors and therapists working with uma and myself.
some of the things said there were.....that she will
most likely walk out upon discharge with a brace and
cane....that she will almost definitely have no trach
or g-tube...that she will improve her speech
function.....that she will definitely be recommended
for out-patient rehab there....and that she may stay
longer than four weeks as allotted by the county. to
say that my behavior - the direct questions, the
continous presence - has made an impression on the
whole team is an understatment. the head of
occupational therapy has taken a personal interest in
uma's case and the head neurologist there knows my
music work thru mutual friends who are actors.
everything that can be done for her is, i beleive,
being done at the moment. some days it's just not
enough for me. having every life intention i've ever
had be suddenly taken from me (and her), however
temporary it may be, is an experience that can't
always be helped by the progression of her recovery. i
just have to deal with it and keep trying.
sometimes i feel so bad that i can't think of more
stimulatin things for her to do besides just napping
with her or massaging her or watching her favorite
shows on dvd. this morning, before her first therapy,
i asked her if she wanted to take a 'walk' outside.
she nodded. we got her dressed and into the
wheelchair. i rolled her to the elevator. she has
learned to press the buttons. we went up to the 3rd
floor where there is a large open patio. it was empty
except for us and the cool morning air. as soon as the
automatic doors opened she grabbed the blanket on her
lap and drew it closer to her chest. i picked a spot
and braked the wheelchair. i said, 'we're going to
stand her for awhile, ok?' nod. she stood up with
very, very little help from me and we 'walked' 3 paces
forward, closer to the balcony wall. she put her left
hand on a pillar and stood alone while I reached back
to the wheelchair and got the blanket. i wrapped it
around her shoulders and stood behind her. she studied
the outside with me, both of us standing up. after
awhile i whispered to her that last week she couldn't
stand at all. she nodded. i told her i love her with
my whole soul and hoped she understood at least the
intention of it, and we went back inside.
i hope eveyone is doing well. talk soon.
john
*
Hey everyone...AN UPDATE RE: VISITS TO SEE UMA:
Uma has been getting lots of visitors, which is wonderful, but it's also
kind of exhausting for her. She tries to be "on" for her visitors--to
listen, to interact--and after a long day of therapy, she can get pretty
wiped out after just a couple visits with friends. We're also finding that
since she's started to speak, she's getting increasingly frustrated at her
own inability to make sense of words, and that can make her uncomfortable.
So we've been doing some brainstorming and we think it would be best to put
together some sort of calendar/sign-up list for visitors, so that Uma
doesn't feel so overwhelmed, and to help ensure that you have a quality time
with Uma when you come. So if you'd like to visit, please come! Just email
me first and let me know when you'd like to see her--if it looks like that
day already has several visitors, we'll find another time that works for you
and for Uma.
A couple of other things to remember:
--The best time to visit is between 3 p.m. and 7 p.m.
--Short visits are best--20 minutes or so--because Uma gets tired very
quickly.
--Silence is okay, you don't have to feel the need to fill every moment with
talk. Uma is happy to see friendly faces and sometimes it's nice to just sit
together and "hang."
Thanks for understanding all of these "rules." We're figuring out what's
best for Uma on a day-by-day basis, taking cues from her. We just want her
to be as comfortable as possible, and to help her get what she wants and
needs. Thank you for your love and support!
Please email me at dimsumday@gmail.com to sign up for a visiting time. If
you could put the word "visit" in the subject line, that would help me keep
the emails straight. I'm slightly overwhelmed with emails, so I apologize if
you've emailed me and I haven't replied yet--but if you put "visit" in your
subject line, that will help me keep these emails separate and I will reply
asap! Thank you...
much love,
erik
Posted by bonnie at 5:52 PM | Comments (0)
March 28, 2007
Eff Off, Spam Faxers
So, every morning since Friday (usually starting around 6am), we've been receiving a half-dozen spam faxes (or rather, spam fax attempts, since I'm up and intercepting the calls to prevent waste of paper and ink) from...
Number Unknown (and yes, we have anonymous call block),
310.388.8002,
310.388.8021,
514.958.0000, and
514.958.0001.
Eff you, spam faxers. And eff you, state of California, for not offering the most intense level of nuisance call block available to consumers in other states.
PS--I am super busy, miss my regular blogging, and hate to roll out such a negative nellie blitz now that I'm taking a moment's break from Cricket Feet Showcase-based work to post at all. Meh. Spammers suck.
Posted by bonnie at 6:24 AM | Comments (4)
March 26, 2007
Long, Exciting Uma Update
From EriK.
I have a feeling this email is going to be long. (Okay, I just finished writing the update and it IS long.) And it's okay if you feel like skimming it because I have a feeling that when Uma eventually reads it, she's gonna be like, "oh my god, erik, stop rambling" and she'll end up skimming it too. (Or, just read it when you have a lot of time.) (Like, print it out and read it the next time you have to go poop.) It's just that I haven't sent out an update in a couple of days, which means I have a few days worth of anecdotes to share (Thursday through Sunday), and I'm assuming that'll add up to a long email. (Spoiler: it does.)
First of all, Uma's doing very good. She has a long road ahead of her and she seems to be aware of the long road ahead of her, so that's both tough and good. A few nights ago, before I left the hospital, I leaned in really close to her and I told her: "You know you're not going to go through this alone, right? There are so many people who are praying for you, so many people who are here for you, so many people who are going to help you get through this." She smiled and nodded. She knows.
Uma continues to show so many wonderful signs of Uma-ness and I believe that she is going to come out of this whole thing with her personality and essential character intact. (We must remain HOPEFUL of that throughout all of this.) That's the scariest thing about a brain trauma—not the fear that your loved one won't remember who YOU are, but the fear that your loved one won't remember who THEY are. I don't think that's something we need to be afraid of anymore. All of the other things that Uma may have lost…like reading, writing, walking, etc.—those are all things that she can get back, all of those thing can be relearned. And we're gonna help her relearn 'em. But her essential Uma-ness…and you know what I'm talking about when I say "Uma-ness"…that irreverent, snarky, loving Uma-ness…it's there.
THURSDAY:
On Thursday, when I arrived at the hospital, Colleen Wainwright was there with lunch for John (thank you so much, Colleen). Uma's speech therapist was there too—she fed Uma some apple sauce, which was the first time Uma had eaten anything since that one time they fed her apple sauce in New York. (She's going to get pretty damned sick of apple sauce pretty darned quickly, so hopefully they'll be able to move on to other foods soon.) The therapist dyed the apple sauce blue in case Uma has any trouble digesting it—if the apple sauce comes back up, they'll know it's the apple sauce because there ain't nothing in your body that's naturally blue. So that's what they're feeding Uma nowadays: blue applesauce. And ice chips too. Hey—it ain't chicken curry with lentils and spinach, but it's a start.
The speech therapist put a speaking valve over Uma's trach, giving her the opportunity to talk. The speaking valve is basically just a little cap that covers up the trach and blocks that air hole, so that the air comes up through her mouth. Uma usually coughs right after you put the speaking valve on, and it's an entirely different cough than the cough we've gotten used to hearing. Without the speaking valve, when she coughs, her cough sounds kind of hollow and rattly, like—you know those children's vacuum cleaner toys with the colorful balls in a plastic oval cup? And when you push the vacuum, all of the colorful balls rattle in the plastic cup??? Do you know that toy I'm talking about? Without the speaking valve, Uma's coughs sound kinda like that. But WITH the speaking valve, they sound like real, solid coughs, and you can totally hear Uma's voice underneath.
And that's hopeful, that's encouraging. It tells us that Uma's voice is there. But Uma still hasn't shown any signs of attempting to talk. The therapist will say things to her, like, (pointing at me) "Who is this? Is his name Steven?" Trying to get Uma to say, "no, it's Erik," or just "Erik," but if the therapist knew Uma she would know that this probably isn't the best tactic to take with her and instead of responding, Uma will look at the therapist, like, "do you think I'm an idiot?" I want her to use that frustration and just go ahead and call the therapist on it: "I'm not an idiot, I know his name and you do too, so let's stop playing this silly game." But Uma hasn't gone there yet.
The speech therapist also works with Uma on writing. On Thursday, she got out a dry-erase board and wrote "U-M-A" at the top of the board, then she put the pen in Uma's hand and guided Uma's hand through the motions of making the letters, and then she asked Uma to do it herself. Uma knows what she's being asked to do, but there seems to be some writing aphasia because she can't quite get the letters yet. "U" seems to be particularly difficult for her—she was getting the "M" really well and then she would continue to do the "M" and the therapist would tell her to start at the beginning again.
Then we moved on to numbers, and the therapist did the same exercise with "1-2-3-4-5," and there must be something about the M/3 shape because Uma got the "3" down and wanted to keep writing the "3," I think to show us that she could nail it, but the therapist told us not to let her skip ahead because she needs to get the entire series of numbers down, otherwise she could re-learn them out of order. So we would start back again at "1".
The thing we have to remember with these writing exercises is that Uma is using her left hand for them and she's freaking right handed. So not only does she have to re-learn how to write, but she has to do so with her non-dominant hand. And she's going to, because that's the kind of rockstar she is. But it's going to be doubly tough.
After the writing exercises, the therapist got out an Uno deck and laid out several cards. Then she would hand different numbered cards to Uma and she'd tell Uma to put the cards in the correct piles. And Uma did this correctly, without hesitation, every single time. So she definitely comprehends the images, and understands what she's being asked to do—it's replicating the images and writing them herself that's difficult.
So after the therapist left, we helped Uma practice writing her name some more, and she was having a really tough time of it, but after struggling for a while, she wrote her name almost perfectly twice. The "U" is still kind of difficult—her "U" has a tail on it right now, so it kind of looks more like a "y," but she's getting closer and closer. After we practiced writing her name for about twenty minutes, Uma got tired of writing and she held the marker up in the air and started taunting me with it. I swear to you, she had this devilish look in her eyes and she was looking at me like, "you are not going to get this pen from me," and then she moved the pen close to my face like she was going to write on my face and I said to her, "you wouldn't dare…" And then she defiantly wrote on my face and then laughed. And then I had a big red mark on my face for the rest of the day. It was a nice moment because Uma and I have a very playful relationship and she was settling right back into that playful groove with me.
After that, Uma was pretty tired and she took a nap. John went out to run a few errands and I stayed with Uma while she was sleeping. When she woke up, it was really quiet in the hospital and I decided to sing to her because I thought maybe that would be nice, except I forgot the part about how I'm a terrible singer, and I tried to sing a Regina Spektor song to her (that part of her song "Fidelity," where she sings "all my friends say / that of course it's / gonna get better / gonna get better / better, better / better, better / better, better, oooooo") and Regina Spektor songs are difficult to sing even if you're a great singer, so my terrible singing really wasn't as "nice and soothing" as I was hoping it might be, and then I stopped singing and apologized to Uma and told her, "I know you'd much rather it was John singing to you right now, wouldn't you?" And she smiled and gave me this look that was a complete, "yes." So I stopped singing.
So then I asked her if she wanted to make any phone calls, and I asked her if she wanted me to call my Aunt Jill, who she knows really well and loves, and Uma's face lit up and she nodded vigorously—so we called Jill, and I held the phone to Uma's ear while Jill and Jill's two kids, Steffani and Taylor, took turns talking to Uma. Steffani is 10 and Taylor is 7 and they both love Uma so much—they built an Uma shrine in their living room with photos and drawings, and every day they go light candles at the Uma shrine and talk to Uma and tell her things like: "you have to get better soon so we can have another meeting of the Boys Are Dumb club, or the Smart Girls Club." Anyway, these little girls have been so anxious to talk to Uma that when they finally had her on the phone, they kept pausing to let Uma respond to them, and Jill had to keep reminding them to keep talking because Uma can't talk back yet. I had a dream last night—a really vivid dream—where Uma started talking again. We were in the hospital, and she hadn't spoken yet, and we were all just sitting around, and then Uma just started speaking, as if she'd never not spoken. And I know that could happen—it's what happened with Bob Woodruff—and so I keep praying that Uma's speech will suddenly come back to her. Feel free to visualize and pray for that to happen.
FRIDAY:
Friday was another long day of therapy. Uma's therapy sessions are pretty intense—especially physical therapy because she's spent most of the last 50 days confined to a bed—and these sessions are exhausting too. But Uma makes great strides every day. John worked with Uma during her therapy sessions and I'm going to copy and paste his update from Friday for his perspective on how her therapy is going. I'll continue my update after JOHN'S EMAIL:
Hello,
Each day Uma has an hour with an Occupational
Therapist, a Physical Therapist, and a Speech
Therapist. It may not seem like a lot of time but it
is very tiring for her. In so many ways the things she
is being asked to do are new for her. Her bedridden
state for the last 50 days has produced some serious
hurdles to her recovery. But she is trying and doing
well.
Today Erik and I were brainstorming about post-rehab
facility rehab in the home and many other options so I
didn't see much of what Uma and the OT did. I did see
her practicing writing though, and I saw that the sink
in her room was wet with use. The OT is 'hopeful'
that Uma will meet some of the goals we discussed
before her discharge. I hope that turns into a more
confident opinion soon.
The ST seems a bit frustrated with Uma. The other day,
while Prakash and Nava were there she asked them to
speak to Uma in 'hindi' to help Uma begin to talk with
the 'speaking' valve on her tracheostomy. They
informed the ST that they don't speak hindi but speak
tamil and that Uma should work with English. Then the
ST asked if she should try Mandarin as Uma went to
high school in Taiwan and speaks that language. Today
the ST took Uma outside for a bit in, I guess, some
effort to get her to talk. Didn't work. So we went
back in and I watched, from a distance, (sometime I
can be a distraction) as the ST had Uma draw a line
between two out of three pictures on a page that were
the same. It's like Sesame St. I saw through the
office window the ST trying to help Uma with the pen
in her left hand and saw Uma yank her hand away from
the ST! She clearly wanted to do it on her own. I
can't think of anything that would indicate to me that
Uma is still in there! The ST expressed some more
frustration to me after the session and I told her
that Uma can be a VERY private person and that she is
the only person I know who can sit in a one on one
situation and not say a word to the other person. If
she doesn't like you or trust you, you are seriously
S.O.L. because if Uma doesn't want to do something,
you're not going to get her to do it. Let's hope this
stubborn-ness can turn around to help her.
With the PT it was a different story. We missed our
regular PT because Uma underwent a vascular test for
blood clots, which she passed. So we had a substitue
later in the day. Here is why you need to stay on top
of things: the sub started out by attempting to put a
brace on Uma's LEFT leg. I said, "Did you know that
the RIGHT side is the weak side?" So then she
switches. Ok, not the end of the world....good think I
was there. She has Uma practice getting out of the
wheelchair and into 'bed' again. We have to set the
brakes, get the foot-rests out of the way, get Uma to
slide forward in the wheelchair, LEAN forward and put
her left hand on the bed and half pull half push
herself up out of the wheelchair and onto the bed with
only a little help at the hips. Then she has to get on
her left side and, with her left leg, lift her right
leg up onto the bed, then roll over onto her back. She
did this with a little help and, upon returning to a
seated position on the bed, began to cry. She had the
speaking valve in her trach at the time so this was
the first I've heard of her voice since Jan. 31st in
the emergency room when she yelled, "I AM IN HELL!".
Her tears today and her cry back then were perfectly
clear utterances of her exact emotional and physical
experience. The look on her face today was so pure in
its frustration and sorrow and fear. This clarity of
expression made it so easy to comfort her. I hid her
face from the rest of the people in the PT gym, let
her cry on my shoulder, and told her, "....this is
just temporary Uma. We're just practicing right now,
this is going to change, you're going to walk again
but you were so hurt that we have to start here. It's
just the first day. I'm so proud of you. I want you to
be my wife and walk down the aisle for me so let's do
it again. Besides, once you walk out of this place you
never have to see these people again (smile from Uma)"
So the next time I helped her and it actually went
smoother. Her movements had more force to them, more
accuracy. Her sense of balance in heavily impaired but
not nearly as much as it was before the shunt
revision. We then moved out to the hallway and she
practiced standing up and holding onto the hand rail
along the wall. She was starting to get tired. You can
tell this because each time she would sit back down in
the wheelchair she would try to attach the seat belt!
We then practiced walking. She had a four-legged cane
in her left hand and a PT on her right side. She took
12 steps. The last few found her holding the back of
her neck in pain. So many muscles must be so tight for
her.
The last adventure was to go to the bath room/shower
and practice getting onto the bench to take a shower.
Probably next week we'll be able to give her her first
real shower since Jan. 30th. ....back to bed and a hot
pack for her neck, a massage from me and some
stretching exercises.
And I've decided, based on cues from the staff, to
keep moving her right side, keep stretching her
muscles, practicing writing, gently trying to get her
to talk, even after hours of therapy.
They have discontinued feeding her with liquid foods
from the IV. Now they are just directly injecting food
and water and medicine into the P.E.G. This means
she's not 'hooked up' to anything. And THIS means that
I can crawl right next to her in her bed and we can
fall asleep together. And tonight, in that bed, I
finally went home again.
Honestly, I feel so afraid for anyone in a hospital
situaton who doesn't have their own pit-bull advocate
looking out for them. She could easily be dead right
now if certain questions weren't asked and certain
points weren't made and acted on. Her road to any
kind of meaningful function is so incredibly long and
she just won't be alone on that road. When medi-cal or
this facility run their course we will continue with
other resources if necessary. I believe in her mind
and in her spirit and I believe there is merit to the
idea that the world is better with her in it. Pray for
her spirit, that she would have the will and humility
to submit to this process and dig into it with all the
stubborn-ness she can.
Thanks for reading and responding to these emails. I
need to write them and it's good to know they're being
read.
love
john
ME AGAIN: (and this really is an epic email, I apologize for sending out a little novella) After therapy on Friday, we tried to have some "fun." Which is slightly difficult in a hospital setting. We watched an episode of Sex and the City (the one where they judge a firemen stripping contest and Carrie meets the politician who will end up wanting to pee on her in the next episode) and that was nice and relaxing, and then we listened to the Buffy Musical soundtrack, which Uma definitely enjoyed. During Spike's song, Uma made what I interpreted to be a "rock on" face, and she was smiling during the Anya/Xander duet. If you aren't familiar with the Buffy musical, I'm sorry to go on and on about it (and you're really missing out), and one last thing: during "Walk Through the Fire," Uma and I were looking at each other for the whole song, she was very focused, listening, and I felt like she was lying there identifying with Buffy and it was pumping her up for the long road she has ahead of her. This is probably all hopeful interpretation on my part, but the song is basically an anthem about how Buffy needs to be heroic and do the hardest thing she's ever done in her life, and Uma's in the same place—except instead of fighting "dancing demons," she's fighting her own body. We just need to keep supporting her and loving her (as Tara sings in the song: "what can't we face if we're together?") and she will walk through the fire and win this fucking battle. Okay, sorry I just geeked out on Buffy the Vampire Slayer like that, but Uma's a Buffy geek and she'll appreciate it.
The speech therapist told us to try to keep the speaking valve on her trach as much as possible—we can't just leave it on 24/7 because it requires slightly more effort for her to breathe with the valve on, and she gets tired and starts to fall asleep when she's wearing it—but the longer she wears it, the better: when she's able to wear the valve all day and all night without having any trouble breathing, that will mean she's ready to have the trach removed.
On Friday, she wore the speaking valve for two pretty long intervals and we would tell her that it was okay for her to try to talk if she wanted to, but again she didn't make any attempts at talking. I think I've already said this in this very long email, but for all of you still visualizing things for Uma, still praying for Uma, this would be a really good thing to focus on. I have a theory, and this is totally just my interpretation and I might be totally wrong—but I feel like Uma might be afraid to try to talk. Afraid because: what if she tries and she's not able to do it? She's so powerless in so many ways right now and withholding speech is really the only "power" she has. So I feel like she might be waiting, holding that power back for now, until she feels completely ready. A little anecdote: my family gets together a lot, and Uma's been coming to family gatherings for years. Whenever we would go to these gatherings separately, if she got there first, she would wait outside in her car until I got there. Even though everyone in the family loves her and embraces her as one of their own, it took Uma several years to feel comfortable enough to go inside ALONE and claim herself as part of the family. But this past year, she finally felt safe enough to do that. Anyway, I've been sitting in the hospital with Uma praying for her to try to talk again, and a part of me feels like she's sitting in the car outside with her voice, waiting to feel comfortable with it, waiting to try. And I ask all of you to PRAY and VISUALIZE and HOPE for her to stop waiting and for her to PUSH THAT VOICE OUT OF HER THROAT. Her voice is there, we've heard bits and pieces of it underneath coughing fits. So pray for her to let her voice be heard.
On that note, I encourage you to go out into the world today and use your own voice, use it for Uma. Be bold: ask your boss for that raise; tell that person who you've been secretly crushing on for years that you've been secretly crushing on them for years; stop being so stubborn and apologize first. Whatever. You've got a voice, so use it—and use it big. And while you're out there in the world using it, take a few moments to imagine Uma doing the same thing. That would be awesome. Thank you.
Okay, now here's JOHN'S UPDATE from SATURDAY:
hello everyone,
uma did very well yesterday in many ways. she is
already beginning to get up from and back into her
bed and wheelchair with more ease and strength. on
friday she walked 12 steps. on saturday she walked
about 25 both using the railing on the wall and using
a really long pole in her left hand to both simulate a
cane and also to force her torso to work more.
In speech therapy she is doing well at some things.
when shown a piece of paper with three letters or
numbers on it where two are the same, she can circle
the two that are the same with increasing speed and
ease. really, yesterday was the first day she did this
and she made no mistakes and gained a dexterity with
the pen in her left hand by the end of the exercise
which included about 20 pages of images.
i've been told by the speech therapist that she will
have her tracheostomy in for at least two weeks. this
differs from what the doctor told me upon our first
meeting. the doctor is more aggressive than the ENT
apparently. this news is very disturbing to me but
their point is that she need to be able to go through
the weaning stages without difficulty breathing. they
have trained me to put the 'speaking valve' on and
off. this is nothing more than a one way valve which
allows air to pass into the trach. but not out of it,
forcing her to breathe out through her mouth or nose.
this type of breathing is more difficult physically
than simply breathing though the trach and so she
might tire more easily. and since she is not
electronically monitored for anything anymore, they
want to be very conservative with this.
my frustration with this is lessened somewhat by the
fact that she has not attempted to speak even WITH the
speaking valve on. we had an alternate speech
therapist yesterday (saturday) who was very good and
seemed to think that uma has apraxia - difficulty
planning the movements necessary for speech AND
aphasia which is a loss or impairment of the ability
to produce and/or comprehend language, due to brain
damage. while she is beginning to follow commands
much more readily in other aspects of her therapy, she
has yet to try to speak or vocalize in anyway.
i know i've said in other emails how great the rehab
place is, but there is so much to keep track of and to
push for. for instance - one therapist will mention
electrical stimulation for her right arm but not write
a request for it. how did i find out that you have to
write a request for it? because the alternate saturday
therapist told me....and SHE is going to do this for
us on monday. so, in my mind, i put two things
together - that we lost a few days without this
treatment of her right arm and that we will not be in
this facilities' in-patient program for more than 4 or
5 weeks. and this is just ONE item on a long, long
list of items that need to be addressed for her. i'll
say it again - i honestly don't know how anyone gets
better without some real help OUTSIDE of the medical
team that is working on them.
she and i are able to take naps together a few times a
day and we usually fall asleep together at night after
visiting hours while watching a dvd. these are the
moments that i live for. the non-verbal exchange
between us exists as it ever did, the level of
absolute comfort and ease between us remains intact.
she and i have a relationship that is very much
changed but that remains, at its core, the same - the
foundation of our relationship is intact but the
structure of it has changed. she receives comfort and
help from me and, i believe, will, in the future, be
able to reciprocate.
what i'm praying for now is (besides patience for me)
is for her mind and capacities to heal in such a way
that she feels as deep a sense of fulfillment in life
as she ever did - and that she'll be able to continue
to grow as an emotional, intellectual, and relational
woman.
here is a link to a site that some of you might find
interesting. it's some idea of what she has gone thru.
http://www.emedicine.com/EMERG/topic559.htm
we are not in the clear yet. i don't know how else to
say it. there are as many things to be grateful for as
there are things to pray for right now. i'm not going
to forget about either. please pray and think of her
if you can manage it.
also - re: visiting. we're keeping the time of each
visit to about a half an hour with breaks in between
people. she tires easily and withdraws the longer
people stay and talk to her. it's not necessary to
continue to speak to her simply because you're
visiting - she probably can't really understand
everything we say to her right now anyway. intention
counts as much as words right now i think. please feel
free to call me for any details.
love and thanks
ME AGAIN: Okay, this email has already been WAY too long, but I'll have to wind it up soon because I took much better notes on Thursday and Friday than I did over the weekend. So I'll round this up with a few weekend highlights:
--Uma had many, many awesome visitors over the weekend—I hope I'm not forgetting anyone: Sissy, Colleen, Aida, Dan, Joe, Patt, Maria, Marvin, Roman, Michal, Emily, Norma & Dan, Wayne, Joe C., and of course, Marie. Marie just had the busiest workweek of her year, and she's now she's back on the other side of that busiest workweek, and I know Uma was so happy to have Marie back at her bedside. There were a lot of great visits over the weekend, and all of the excitement kind of tired Uma out, so we're going to work on getting a schedule together so we can spread the visits out throughout each day and make sure that Uma gets lots of rest throughout the day too.
--John brought his guitar to the rehab facility and he's been playing for Uma and it's the most beautiful thing. He's been playing some of his own songs, some Beatles tunes, some James Taylor, lots of good stuff. Listening to John play the guitar and sing is one of the most soothing sounds in the world. I wasn't there for this, but John and Marie were telling me that at one point yesterday, John was just improvising some music and then one of the nurses—a Filipino man named Alfred—came in to check Uma's vital signs and he started singing a church song, and John listened to the melody and followed along, and then after the nurse finished checking Uma's vitals, he turned to John and said: "You must like that song, you know it too!" But John was just playing what he heard the man singing.
--Okay, I'm going to wrap this email up (finally) with JOHN'S UPDATE from yesterday (which he sent out this morning) because his update has the most exciting highlight of the weekend (I'll give you a preview: Uma said her first word!)…LOVE to all of you.
JOHN'S UPDATE:
hi everyone,
we had a day off yesterday from all the therapy and
had many visitors. at one point there were 6 of her
friends in the room and she really enjoyed that. she
was laughing and smiling a lot, focusing on whoever
was loudest at the time! we keep those visits fairly
short because, while the joy is a great thing, the
activity is tiring for her and she still does not
speak and withdraws visually after a time. it's a
balance.
the first thing we did yesterday with a nurse named
margaret was to give uma a seated shower - her first
real bathing since jan. 30th. she really liked that
and did much of the work herself. we helped her dress
in her favorite edmonton oilers jersey and put her
back in bed - again, with her doing much of the work.
if one can read a sense of contentment on someone
else's face, i think i did that as soon as she got
settled in bed. she seemed very relieved. many of the
comments margaret made were about how much uma has
changed since the first time we were there, before the
shunt revision, or about how much of the work uma is
doing on her own.
there were some other milestones yesterday, too. in
addition to a shower in the bathroom, there is also a
sink and a toilet. yesterday we made use of the
shower, obviously, AND we made timely use of the
toilet which was precipitated by a facial and hand
gesture cue from uma. those of you who know her and
her pride know that i've already overstepped by bounds
in telling you this but this is a very big deal.
think of all the things you do several times a day
that you just don't really think about.....you just
sense a need or desire and you go. what we're slowly
getting past, i think, is her inability to do these
basic things.
we are also alternating having the speaking valve in
her tracheostomy and not - depending on how tired she
is. after most of the people left yesterday and just
marie and wayne were there, and after we had taken her
out on the 3rd floor balcony to look outside (she
liked that a lot, too), she was looking a bit
uncomfortable so i whispered in her ear, "do you need
to go to the bathroom?" and she said (get that? she
SAID), "no". first word......."no". it was with
great effort that i did not make a big deal out of
this. no cheers, no tears, no hand clapping - my
thinking is that we are trying to establish normalcy.
she would normally talk - lets experience her talking
as the most normal thing in the world. it's weighty
enough already without a dance of congratulations. (i
did tell her how great it was that she did that - she
rolled her eyes)
the activity today is, to me, reassuring that many
things in her recovery will be just a matter of time
and hard work. no one who knows her could ever accuse
her of being lazy but this is different. prior to jan.
31st i'm sure she felt like her body was her own to do
with as she felt - whatever, whenever she wanted for
the most part. the relationship she had with her
body, her musculature, her nerves, her ability to
receive and give all kinds of intellectual and
emotional expression, her desire to act and her gift
to us of her theatrical work, her experiences and
plans for her work-life, her plans for her wedding,
and on and on - these things are all changed for her
now. in just four days of rehab she has spoken,
indicated, consistently moved the functioning parts of
her body with more control, and tolerated all pokings,
proddings, changings, etc. with great patience. i've
already seen it wearing on her and it will wear on her
more as time goes by. this will probably be offset, at
times, by the gains she'll make = good days and bad
days - good moments and bad ones. that's why,
yesterday, i asked for your thoughts for her spirit.
for those of us still on this road of prayer and
visualization and hikes and lunches, her spirit could
use help every day.
for me, if this level of activity and interaction is
all we ever gain back from the insult to her brain,
that would be ok. uma and i are already relating as
well non-verbally as we ever did. maybe i'm able to
claim that because i just don't believe that this is
the end of her recovery at all.
each day there are moments for me that are so
surprising in their clarity and meaning. last nigh i
was laying down next to her and she had fallen deeply
asleep. her right arm was completely relaxed and she
was breathing very steadily. i just looked at her face
- tracheostomy, shaved head, scars and all and
thought, 'i'm glad you're in my life. i'm so glad you
didn't die' and then i planned a little bit of what
i'm going to say at our wedding.
thank you all so much for all the prayers and thoughts
and actions.
love
john
Posted by bonnie at 4:20 PM | Comments (1)
March 23, 2007
Kitties at Home
So, Keith repurposed a cubby in the headshot system area.
Yes. Keith has an interesting sense of humor.
Here's Archie a little closer in.
Toooooo cute, eh?
But wait! I asked Keith to get a wide shot, to include Thwok on top of the kitty condo (which is on top of the cubbies).
Now, look at the larger version of this photo. Look at the top right corner... way in the distance. On top of the bookcase in the den. See that? It's SALEMA and her hauntingly lovely eyes, glowing from the other room.
That's how our kitties kick it at home. Awwwwwwww.
Posted by bonnie at 9:49 PM | Comments (3)
March 21, 2007
Uma Update
Latest update from EriK:
I have some rockstar news: Uma is back at the rehab facility. Which means her therapists can get all of her therapy back on track. Which is huge, awesome news. Because for the last few days she was just sitting there in the ICU, bored as all get out, waiting. And now that she's got a perfect, functioning shunt that's going to facilitate a whole lot of progress in her brain, we don't want her to have to wait anymore--we want to take advantage of her new shunt and start getting her better! So now that she's back at the rehab facility, that's the plan.
Here's John's update from last night, and I'll post my update below John's.
JOHN:
Hi there everyone,
About an hour ago Uma was taken back to the wonderful
rehab facility. I was told early in the day that the
transfer would be today, but after waiting for about 9
hours and being told several different things, I
finally put both nursing stations at both facilities
together on the phone so they could finally figure out
who is suppposed to call the amulance.
I saw the ct scan today - i had to actually run and
chase down the doctor to get his attention but he
showed it to me - he actually voluteered to show it to
me. I saw a rounded black object in the middle/right
of Uma's head - her right ventricle - and right in the
middle of it was a short bright white strip - the
shunt. So then, I was looking at a shunt in a
ventricle which, I am agonizingly sorry to say, I have
not seen before. When looking back on this some might
say, "Well, in the grand scheme of things, you only
lost a couple of weeks due to the mal-placed original
shunt..." but it's different when you're there each
day all day and all night knowing that something isn't
right and knowing that there is so very little you can
do about it and knowing that this isn't her elbow -
she didn't sprain her ankel here, this is her
brain.....there's really no feeling quite like it and
I wouldn't recommend feeling it if you can possibly
avoid it.
On the other hand......her face is different now. I'm
almost afraind to say how much more clearly she looks
at you or at her environment. She cried twice today.
Because she can't talk yet, I don't know why she
cried. But she was looking at one of the wires
attached to her in the ICU, the pulse/ox that attaches
to her finger. She was studying it for a long time and
then she looked at me and just started crying. The
tears and her face told me she was afraid and sad. I,
of course, comforted her - telling her that everything
she was and wants to be will come to pass, that she
will use her right arm and leg again, that she would
come home again, that we would get married, that she
would go to work again, that she would act again, even
that she would take care of herself again, and that
today we would be going to a better place.
I can't imagine what it must be like for her but i
have a feeling we will know soon enough.
I was too tired to tell you last night what happened
yesterday. She kissed me.....no, I'm mean SHE kissed
ME....I didn't reach down and kiss HER. She lifted up
her head to me, held the back of my head with her left
hand and kissed me like a woman kisses a man. A very
intense and wordless (!) moment followed.....just eyes
and cheeks and hands and breath. Funny how you can't
hear a single ICU alarm going off in a moment like
that. My entire universe was her face, her eyes and
the tiny-ship-in-the-middle-of-the-sea feeling you get
when your emotional exchange reduces every distraction
to it's proper size. ....you float, safe because you
are together.
And.....today, while listenig to music, she began to
move her head and purse her lips in that "Uma -
getting-ready-to-dance" way. Any of you who've seen
this know what I'm talking about. It wasn't jus
tapping her foot in time to the tune. Nice.
So - I feel that I can't ask for much more than a
properly placed shunt and the behavior she's beeen
displaying and being out of a hospital. I feel that if
she remains medically safe, she will be
rehabilitationally sound.
And, tonight, I will sleep.
Love
john
*
And now I want to share some moments I had with Uma yesterday:
When I first arrived at the hospital in the afternoon, John had been alone with Uma all day, so he left the room to take a nap, and I sat with her alone for about an hour. When I sat on the edge of the bed, I felt my glasses move ever-so-slightly down my nose and they were kind of uncomfortable and without indicating anything--without pointing at my glasses, without wrinkling my nose to shake my glasses--I asked Uma, "can you push my glasses up?" And without missing a beat, she immediately reached over and pushed them up the ridge of my nose. Total comprehension, without a doubt. (I think this comprehension sometimes comes and goes though--later in the afternoon, when John had returned from his nap, I asked Uma to push my glasses up again, and she wouldn't do it. I don't know what to make of that. Either she didn't understand what I was asking, or she realized that I was trying to show John that she understood what I was asking and she didn't want to "perform" for me. Both seem equally possible. If her comprehension does, indeed, waver like that, that's just something we're going to have to work on with her during her rehab.)
Uma and I hung out for a while and at one point I asked her if she wanted to take some photos with my phone. Her face brightened when I asked her that, so I put my phone into "camera" mode and I handed it to Uma. Now, when you're taking photos with my phone, it has a pretty big screen that shows you what you're about to take a photo of, and Uma held the phone up and started surveying her surroundings through the phone. She definitely seemed to understand what she was doing, like she was looking for a good photo. I told her that she had to "push that circle button in the middle" when she wanted to take a photo. She didn't show any signs that she knew what I meant, though, and then she just kept surveying her surroundings through the screen. So I told her again, "you need to push that circle button in the middle if you want to take a photo." I wasn't sure if she was understanding, so I told her several times, and pointed out the correct button. Finally, she "got it," pushed the button, and took a picture of me. Then I told her, "you have to push the button again if you want to save the photo," and she immediately pushed the button again. Then I asked her, "do you want to take another photo?" And she did--she took two more photos of me. Then I asked her, "do you want to take a photo of the ICU, so you can show people what you've had to stare at all weekend?" And she understood what I was saying, she stopped pointing the camera at me and directed it at the room. She held it up for a while and I thought maybe she'd forgotten about the whole "circle button in the middle" thing, so I reminded her--a few times--and then, finally, she took a photo of the nurses station across from her bed. I'm going to post these photos on my blog so you can see for yourself, but I thought it was pretty danged cool.
While I was sitting with her, watching her take photos, I had such a strong sense that: yes, this is going to be a long road of recovery; yes, there are going to be many frustrating moments for Uma; and YES, she's going to get through this. And that last "yes" is the most important one. I mean, obviously. But still: we have to remember that they told us she was probably going to die. And they didn't just tell us that once. They told us TWICE. And those aren't words that you freaking EVER want to hear. But still, the doctors said those stupid words on the first day, and then they said them again on Day Fourteen (after she had her stroke). And look at what she's doing now! Every single day is a blessing and a miracle. Every single day is a day to say "fie on you" to those stupid doctors who dared underestimate Uma. Every single day there is something to celebrate.
Okay, so after our photo session, I found the latest copy of Premiere Magazine in my backpack and I started showing photos to Uma. As most of you probably know, Uma's a total subscriber to US Magazine, and she loves the whole celeb thing, so I figured she'd enjoy checking out the photos, and she definitely seemed interested. There was this one page that had four photos on it, featuring four celebrities: Sienna Miller, Justin Theroux, John Cusack, and Mandy Moore. I pointed each of the actors out and then I asked Uma, "who's your favorite?" And she immediately pointed to Sienna Miller.
Okay, two thoughts popped into my head the instant she pointed at Sienna Miller:
(1) She understood that I wanted her to point at one of the photos on the page! I didn't indicate by pointing at the page myself, I just asked her to show me which actor was her favorite and she immediately responded! Comprehension! Awesome!
And:
(2) There is NO WAY that Sienna freaking Miller is Uma's favorite actor in that group.
So then I thought, maybe she doesn't necessarily remember who all of these actors are and she's just responding to the individual photos and the photo of Sienna Miller is her favorite photo? Of course, since she can't talk yet, this is all just conjecture, but that seems to be the most likely thing to me. Because honestly, Uma: Sienna Miller?
I decided to ask her a different question: "Can you point out one of the two men?" She furrowed her brow and didn't seem to understand what I was asking. So I changed the question again: "Can you point out John Cusack? He's the one who's holding his collar. Who has their hands up? Who's holding their collar?" Uma looked at the photos, but then she furrowed her brow again and didn't seem to understand what I was asking. She seemed frustrated and tired, so I told her not to worry and put Premiere Magazine away. Maybe we will have to re-educate Uma in the brilliance that is John Cusack--and if that's the case, I'm happy to take on the task.
By then it was 6:30 p.m. and the ICU doesn't allow visitors from 6:30 p.m. to 8:30 p.m., so John and I went out to the hallway to hang out and wait for Uma to be transported back to the rehab facility. John's brother Wayne came by shortly thereafter to wait with us. (I am still so in love with the back of Wayne's head--remember, Wayne shaved Uma's name into his hair? It's so cool.)
For a while we got kind of nervous that Uma wasn't going to be transported last night--which was a frustrating thought because the sooner she gets back to rehab, the sooner she can get back into her therapy regimen--but we didn't have anything to fear: Uma was finally picked up by the transport people at 9:30 p.m. and she was in her bed at the rehab facility thirty minutes later.
Visiting hours at the rehab facility usually end at 8 p.m., but since Uma was just getting checked back in, they let us come in and say goodnight to her. After John and Wayne said goodnight, I decided to hang out a little bit longer because I knew I wouldn't be able to visit the hospital today (Wednesday), so I sat by Uma's bed and talked to her for a bit, and then the most amazing thing happened. At least it felt like the most amazing thing to me. I was talking to Uma and I wasn't looking for a response from her--I was just talking--and I said to her, "you know how much I love you, don't you?" And then she nodded. I swear, I screamed at the nurse: "DID YOU JUST SEE THAT!?? SHE NODDED!!!" Because Uma hasn't been nodding or responding to yes or no questions AT ALL up until now. Nodding a "yes" is huge. So then I asked her, "and you know how much John loves you, right?" And she nodded again! And then I told her she was doing really well and she had to nod for the doctors the next day when the doctors asked her yes or no questions, and then I was kinda giddy and I just wanted to KEEP asking her yes or no questions because this was all too exciting.
So then I asked her if she wanted me to call anyone on my cell phone and have another friend talk to her. She smiled, and then I asked her: "How about Erica? Do you want me to call Erica?" And she nodded, so then I called Erica and put Uma on the phone with Erica, and that made her happy. So then after we finished that call, I asked her if she wanted to talk to anyone else, and I scrolled through my phone and said, "what about Bo?" And she nodded again, so I called Bo--but unfortunately we got his voicemail and I left a message telling Bo that Uma was "REALLY ANNOYED" with him for not answering the phone, and Uma was smiling the whole time I left the message. Then I asked her if she wanted me to call anyone else, and I think she was kind of over the whole "calling people" game after having gotten Bo's voicemail, and she shook her head "no." This was a definite "no" shake. It wasn't quite as clear as the nods she had been doing, but it was still a "no" shake.
By then, Uma seemed kind of tired, so I asked her if she was comfortable (and again, she nodded!), and then I said my goodnights, and left.
I just wanted to share all of those stories from the day because I think they're so encouraging and hopeful. Thank you for all of your prayers and good thoughts. Keep them coming. You are all beautiful people!
Oh, one last thing: Michal designed several awesome Uma t-shirts that you MUST check out! Here's the website:
TeamUma.spreadshirt.com (proceeds go to The Uma Fund)
Much love,
erik
Posted by bonnie at 2:29 PM | Comments (2)
March 20, 2007
*blush*
Oh, how happy am I?
It's just about my favorite combination of gorgeous flowers EVER. Seriously, this is a BEAUTIFUL arrangement from Venice Flowers (well done, y'all. GORGEOUS, healthy flowers with so much style and beauty)!
Yup. As if the gift of working with MY FAVORITE PRODUCTION TEAM EVER (and that is REALLY saying something... I've worked with some superstars) weren't enough, the Broken Windows team sent me flowers today.
Seems they like their cast. ;) (Hee! I do too. I'm tickled pink at how wonderful these past four months working on Broken Windows have been. I cannot rave ENOUGH about how cool these guys are.)
So, in a year or so, when the buzz behind Broken Windows is about the level of Little Miss Sunshine, just know that I will really be blissed out. I remember seeing that film and saying, "Wow. I can't wait to cast such an amazing film."
And now I have.
Congratulations to the cast and crew. I know y'all have the bulk of your work stretched out ahead of you, as I hand off this cast to you and officially clock out, but I can't begin to fully express how wonderful this gig has been. I am a better casting director for having had this journey with you. THANK YOU for trusting me with such a beautiful script. And actors, THANK YOU for your love for this project and your faith in me to continue bringing you great material.
It has been my pleasure.
Posted by bonnie at 11:45 PM | Comments (1)
March 19, 2007
Uma Update
This is the latest update from EriK:
Hello everyone... sorry it's been a few days since I sent out an Uma update... a couple of people have called me this morning to ask how her shunt revision went and I totally thought I'd sent out an email after the procedure! Sorry to leave you all hanging. The procedure went well!
Uma had her shunt revision on Saturday morning at 4am. The doctors are confident that it was a success (and they confirmed that the previous shunt was not working AT ALL), and Uma has been very alert since the procedure and seems to be doing very well. She had lots of visitors this weekend, too, and that was awesome. At one point yesterday afternoon, I think there were eight of us there, and since she was in the ICU (not because she needs to be in an ICU, more because it's the only place where they had an available bed for her) we couldn't all be in with her at the same time (the ICU only allows two visitors at a time) so we cycled in and out of the room in five to ten minute shifts, and I think it was nice for Uma to see so many different, familiar faces.
Now we're waiting on a CAT Scan, which should happen sometime today. They wanted to wait a couple of days so they could give the new shunt a couple of days to work and get an accurate look at what's going on in her head. As long as the CAT Scan looks good, they will transfer her back to the rehab facility either tonight or tomorrow. (Call me or email me if you're planning on visiting her tomorrow--Tuesday--and I will let you know which facility she's at.)
I posted a few updates from this weekend, as well as LOTS of photos, on my blog, so you should check that out at: MyYearOfNewThings.blogspot.com.
I haven't given you all an Uma "task" to do in a while, so now I've got one for you to (literally) chew on. It's similar to the "think about Uma while you're swallowing" task I sent out a few weeks ago, but slightly more elaborate.
When Uma gets back to the rehab facility, we are eager for them to take out the trach in her throat so she can start talking to us again, but before they take out the trach tube, they want to take out the feeding tube. And before they can take out the feeding tube (which is actually a PEG tube in her stomach), they need to get her eating again. They will start with soft foods, naturally. Like apple sauce (which they actually fed her in New York, once). And then progress to "realer" foods.
So... this week... I was thinking it would be cool if we could all eat some of Uma's favorite foods and visualize Uma getting back on the whole Eating Train... because Uma freaking loves a good meal (she lists "eating good food" as her #1 "general interest" on MySpace)... and hopefully she'll be back in the whole eating-with-her-mouth-instead-of-a-tube thing PRONTO so that they can get that trach out and then we can help her back onto the Talking Train. Are you with me? Awesome.
Some of Uma's favorite foods include:
--Avocado. This one's a biggie. Eat it alone, or put it on a sandwich, or in a salad, or in whatever. Uma loves avocados everywhere. So put 'em everywhere. And then eat 'em.
--Curries. With chicken or whatever. Spicy, juicy, tasty curries. (When Uma left for New York, she was only planning on being there for 3 days, natch, and she left some dishes in the sink, which then stayed in the sink for awhile because Uma's New York trip ended up being, oh, 37 days longer than planned. Anyway, I mention this because, based on the contents of Uma's dirty dishes, the last meal that she cooked for herself at home before leaving for New York was curry. So curry on, my wayward sons.)
--Speaking of spices, Uma loves the spicy. Ethiopian, Sri Lankan, India, Thai--the spicier the better. She's got an extremely high tolerance for the spicy stuff. I had Sri Lankan leftovers with her once (that she had brought home from her Aunt and Uncle's) and I was sweating like a pig, and she kept telling me I was crazy ("it's not THAT hot"), so if it makes you sweat, that's good.
--Chicken. More specifically, chicken bone marrow. I know this is super strange, and I doubt anyone on this list is actually going to go out and crack open a chicken bone and suck out the marrow, but I'm listing it because it's seriously one of Uma's favorite things to eat and maybe someone WILL go out and crack open a chicken bone and suck out the marrow, and that would be such an incredibly Uma thing of you to do that I'm sure the good healthy vibes you'd be sending Uma's way would be, like, even more intense than your usual good healthy vibes.
--Marmite. This is another weird food suggestion, but what can I tell you: Uma's a strange duck. I've never eaten Marmite and I'm not even exactly sure what it is, but I think they sell it at Trader Joe's and other specialty grocery stores, so if you happen to see it while you're shopping, throw it in your cart and give it a try. I think it's something that one would usually spread on bread, but Uma likes it so much she eats it straight from the jar. Not that she eats it very often. It's something she used to eat a lot in Taiwan. But last December, when I asked her what she wanted for Christmas, one of the things she asked for was Marmite. So she's definitely been hankering for it lately--and who knows, maybe you'll discover a new paste delicacy and you'll start craving Marmite too? Weirder things have happened.
And some drink suggestions:
--Red Wine. Uma enjoys a nice glass of red wine, but she ain't picky. The cheap stuff works just fine.
--Red Bull. I know, gross, but Uma is totally addicted to the stuff. There are usually at least six or seven empty cans rolling around the passenger foot area of her car.
All right, there you go: eat and drink up. Thank you for your continued prayers!
much love,
erik
ALSO, here's John's latest update, from last night:
hello everyone,
since the shunt revision early on saturday morning uma
has had a presence in her countenance that i haven't
seen so far. she is calm, sad sometimes, but clearer.
her facial responses to people are faster. she's not
fidgeting or jerking her left leg around anymore. her
right arm and hand are not locked up in spasm anymore.
this has lasted for two days now. twice the doctor
told us that she seems more 'awake' and that he thinks
the shunt is working.
they decided to do the ct scan tomorrow, monday. i
think this is medically prudent because it allows them
more time to see what effect the shunt has had, not
just on her outward behavior, but on what's taking
place inside her cranium. i've been taught tonight by
dharshi to ask the doctor these things tomorrow - Is
her 'mid-line' still shifted or pushed? Is there any
new bleeding? Is the shunt place properly? Is there
any calcification taking place? Has a radiologist seen
the ct?
There were many moments today between Uma and I that
were priceless to me. Just seeing her look at me with
such clarity is something i'll never forget. Lately it
feels like the passage of time has been altered for
me. I value those moments with her as if they might
never come again. This is NOT a pessimistic viewpoint
for me. This is living right now, IN this moment, and
valuing it as if it were unique and passing....as if
the memory of it will be of staggering importance to
me. And so the memory of those moments passes through
and adheres to every fold in my brain - at least
that's the way it feels.
So - a good friend of mine in New Jersey emailed me
and told me how amazing it is that so much love has
come down from this challenge. It IS amazing. I'm
changed for the better and I've heard that from many
other people. And the truth is, I don't know how I
would have come this far without every word and action
of love that we've received. I/we need ALL of it and
accept it gratefully. There are so many things that
can hide or crush love in this world. But Erik said
that he thinks Uma will come home to a world that is a
little bit better because of what has happened and how
we've all responded to it. I think he's right.
Lastly, it's just really not too late to pray for her
in this shunt business. I've been praying all day
about this and it has helped me to do it. Help
yourself :). She needs to move out of the hospital
setting and needs to do this with utmost confidence.
We know that the shunt will be something we'll be
tending to for the rest of her life but, for right
now, we want to have it work....let's say, for 6
months without another hospital stay. We need to know
that we can jump on this rehab with a real sense of a
reduced need to worry about whether or not she's
qualified medically to participate in rehab. That's
something to pray for....it's on-going, it goes on.
Pray a boundary of safety for her, for her head, her
brain, her spirit.
The plan for tomorrow, at least from another amazing
nurse, this one named Randy, is to get the scan done
in the morning and, if all goes well, move her back to
rehab the same day. I will accept whatever the scan
says and will always push (with respect and tact) for
the very best care for her. Pray for me, too if you
can spare one.
In hope and in love,
john
Posted by bonnie at 3:43 PM | Comments (1)
March 18, 2007
Gosh!
I've been so busy that I haven't even had a chance to welcome Larisa Oleynik to the cast of Broken Windows. (Check out that IMDB page, y'all... looking good, no? *beams*)
Welcome, Larisa! During 10 Things I Hate About You a few weeks ago on TBS, your name shot to the top of our list. And, yay! It's all come together now. Woo!
(Zzzzzzzzzzz. I'm exhausted. I've been doing showcase stuff NONSTOP. Feel free to pat me on the head and encourage me. Thankee.)
Posted by bonnie at 8:01 AM | Comments (2)
March 16, 2007
Confused/Angry: Mistrial
From CBS 2:
Jury Deadlocks In Transient Kills Waiter Trial
(CBS) LOS ANGELES A mistrial was declared Thursday in the case of a transient accused of fatally stabbing an aspiring actor near The Grove shopping center.The jury said it was deadlocked 11-1 in favor of convicting Kim McMurray, 44, who is charged with murder for the April 17, 2005, slaying of Eric Gelman.
He is accused of using a knife to stab Gelman in the 7900 block of West First Street, shortly after Gelman finished his shift at Marmalade Cafe in The Grove, where he waited tables.
Gelman, originally from Florida, had come to Los Angeles to become an actor, officials said.
He had recently landed a role on the TV show "Monk," according to a manager at the cafe where Gelman had worked for two years. After his death, another episode, "Mr. Monk Goes to Vegas," was dedicated to his memory, according to his mother, Lynn.
Gelman's family established a scholarship fund in his honor at Goucher College in Baltimore, where he graduated in 1995.
Los Angeles Superior Court Judge Michael Johnson ordered both sides to return to court April 12.
Previous entries on Eric Gelman are here, here, and here.
Get back to court and get this RIGHT, jurors.
Posted by bonnie at 6:51 PM | Comments (0)
Back Stage West's BEST OF LA 2007
Hi Y'all,
I just saw this over at the Back Stage West website (thanks for the head's up, Blake).
Like Blake, I was named in last year's readers' poll and didn't even know the dang thing was happening. And I gotta tell ya, it is a HUGE honor that still makes me blush.
===========
Here's an excerpt from my blog entry about it:
From this week's Best of Los Angeles issue:
Welcome to Back Stage West's first attempt at a "best of" issue, featuring a compilation of our readers' favorites and staff picks.
Um. Holy crap, right? Wait.
Best Film/TV Casting Director: Mali Finn. Runners-up were Deborah Aquila, Billy DaMota, Richard DeLancy, Bonnie Gillespie, and April Webster.
Wow.
Wow wow wow wow wow.
I--with under FOUR YEARS of experience as a casting director--am named among CDs who have credits like, oh, I don't know... The Matrix; Titanic; LA Confidential; The Shawshank Redemption; Sex, Lies, and Videotape; Alias; Lost; and Knight Rider for cryin' out loud.
Seriously... 95 years of casting experience in that group. I am responsible for fewer than four of those years. I am humbled and amazed and floored and honored to be included in that group of CDs. And I guess, even on the toughest days, maybe I'm not so bad at this job.
THANK YOU BACK STAGE WEST! THANK YOU BSW READERS!
============
Okay, so on to this year's poll...
BACKSTAGE BULLETINS
Take Our Los Angeles Reader's Choice Poll -- and Win!
LA Area Actors: Win a Free Headshot Package!
March 09, 2007
Back Stage West is giving away a free headshot package -- valued at $600! -- from photographer Alan Weissman.
All you have to do is take a moment to fill out our Reader's Choice: LA poll.
Simply click here to take online survey.
Your picks will help us determine who should be included in our annual "Reader's Choice: LA" issue, running May 10.
Deadline for submission: April 2.
Good luck!
===========
So, go. Win some headshots. Share your love. If I'm in the mix again this year, YAY. But either way, let your voice be heard on all things "Best Of" by taking this survey. Woo hoo!
Thanks for the love,
-Bon.
Any time I see someone succeed I am happy, for it affirms my belief that I live in a world where success is possible.
Posted by bonnie at 3:52 AM | Comments (1)
March 15, 2007
12 of 12 for March 2007 (so late)
Dang. Is it really the 15th? Really? Man... I have seriously lost DAYS. Luckily, I have now officially slept. So, I'm on the upswing after an intensely scary few days of my life.
Please please please don't indulge my overly dramatic style of writing about this BS sleeplessness. It is SO not a big deal in the big scheme of things. It's just something that troubles me in a major way, so I want to write about it to REMIND ME to not let it get this bad next time.
Okay, so somehow, I managed to take photos representing my 12 of 12 (see rockstar Chad's blog for the rules and links to all participants... seriously, this is so fascinating and cool), but I kind of don't remember doing it.
In fact, I had a conversation with a filmmaker about 12 hours ago during which we established that there were entire chunks of a conversation we had had on Friday that I totally don't recall.
So, let me just say this: While I may only do this bizarre "no sleep for five days or so" thing every 18 months or so, it is NO fun and I will absolutely go to the doctor next time. I promise. Believe me, the alternative is NOT worth it. I made some really bad choices as a result of my sleeplessness and learned that THAT is actually beyond scary.
Okay. Enough with the big-ass blog introduction leading up to the 12 of 12. Here 'tis. Click on any thumbnail to enlarge (and THANK GAWD I can now see straight... did you know that you actually see stars when you don't sleep for days? STARS)!
2:58am: Archie would like me to STOP trying to work. He must realize that, while I'm capable of functioning on very little sleep 99% of the time, I've gotten to the point where nothing I do is going to fool anyone, so he would like to save me from really screwing up.
2:59am: Thwok, too, is exhausted. See, when I don't sleep, the kitties tend not to sleep. They know something is wrong and they worry about me. They hang out and follow me, room to room, hoping I'll pass out at some point.
3:01am: Maybe junk food will make me sleepy. Am I the only one who eats my Snickers this way?
4:10am: At this point, I have finished my column and made a wish that something big, heavy, and anvil shaped would come crashing down on my head to put me out of my misery. No such luck.
4:48am: Not quite an anvil, but perhaps a Ciroc gimlet will chill me out enough to get a little sleep. One can hope.
6:05am: The note I have for this photo is "just dug through the bin." I have no idea what I dug through the bin to find (or whether I found it), but that's sort of how my life has been since about Friday, as I honestly have lost entire BLOCKS of memory... yet still managed to get stuff done. Scary.
6:31pm: Thwok has gone hunting. We cleaned out the demo reel shelves to do some sorting (and tossing--thanks, Julie) and haven't put the "keepers" back. Therefore, Thwok likes to climb upon the empty shelves and hunt critters. I am mildly entertained. And trying to stay grateful for things that entertain me whatsoever.
7:18am: BONUS PHOTO! This month's bonus was GREEN. I know my blanket doesn't look green, but it is. And the solitaire screen is also green. Yes, I finally downloaded a game for my BlackBerry. That is how bored I am when I cannot sleep. And solitaire is about the only speed of "brain work" I can do at this point.
8:30am: Keith has gotten out of bed and tries to convince me that I can get some sleep if I swig some NyQuil and get in bed. I am appalled at how DARK my eyes are. I look like death. BUT!! I do love that this kind of looks like a Picasso painting. That's cool. ;)
1:34pm: I am sooooooo freakin' bored at this point. I've slept for a grand total of two hours but have stayed in bed in the hopes that I will somehow "get rest" just by being there. Obviously, the fact that I'm doing email just shows ya how restful I'm trying to be. OH! But I was soooo smart to filter out all MySpace alerts at my handheld. Now my emails are down to about 90 per hour at peak times. That's MUCH better.
2:51pm: H2O and 90210. Meanwhile, I'm following up on offers to a few more actors on Broken Windows and finishing up some casting consulting work on Scab (and honestly, I don't remember much more, except that I tried to convince Keith to cancel our dinner meeting with an Atlanta filmmaker, but he insisted that I would be "on my game" once we got to Dan Tana's and started chatting. I'm pretty sure he was right about that.
5:10pm: And this is us on the way to the aforementioned meeting. I ended up leaving the camera in the car, so there are no more photos, despite the fact that I was brilliant and decided the BEST way to finally get some sleep was to drink ALL THE VODKA ON THE PLANET. Mission accomplished.
I finally got my sleep.
It wasn't restful. It wasn't replenishing. It wasn't chemical-free. In fact, it was filled with nightmares and terrors from past evil encounters. And I have bruises. *shudder*
But here's the good news: I survived the OFFICIAL END of the 100 hour sleep-free marathon. And I survived that marathon itself. Damage control issues are reportedly minimal. And now I'm back to me for the next year or so. Or so they tell me. Yay!
I'm DONE talking about this not sleeping thing. So the word for the day is ONWARD. Woo!
Posted by bonnie at 5:15 AM | Comments (4)
March 13, 2007
Uma Update
Uma Update, 3/13/07 (from KiKi):
hello all...i'm just forwarding john's update...lots of information below.
Okay, wait, I realize that I literally just said that I'm "just" forwarding his update, which would imply that I wasn't going to leave an update of my own, but who really thought that was going to happen? Just a couple quick thoughts:
I saw Uma for about an hour this morning. The new facility really is wonderful. One of the physical therapists was in there with Uma when I arrived and this woman was so good. I'm annoyed with myself because I can't remember her name because she was so good and I want to praise her. Anyway, she helped Uma get into a wheelchair and then she had to take Uma's blood pressure to make sure that the levels hadn't risen or fallen abnormally (either of which would indicate that she maybe she was dizzy or not in the condition to be sitting up at the moment--after spending so much of the last 40 days, okay MOST of the last 40 days, lying down, her body needs to take some of these things slowly) and the first time she took Uma's blood pressure it was pretty high, but she'd taken it on Uma's right arm which is involuntarily tenses up a lot, so it's not the best indication of her actual blood pressure. Anyway, I think a lot of people might have taken that one reading and then been like, "oh well, you're not ready for this, back into bed," but this therapist then tried to take Uma's blood pressure on her other arm, and then when Uma struggled with that (because she really dislikes the blood pressure machine, the tightness makes her uncomfortable and fidgety) the therapist decided to stop using the machine and to manually check her blood pressure with one of those handheld pump things (sorry, I don't know the technical term, but "handheld pump thing" should suffice), and finally, after several attempts, she got a good blood pressure read and then she let Uma stay in the chair for an hour. It was just so nice that this therapist went to all of the effort to make sure that Uma was safe.
There was a moment this morning when I saw a look of embarrassment on Uma's face--the physical therapist was helping her into the chair and Uma drooled a little bit on the woman's shoulder and then Uma saw it and quickly wiped the drool away with her hand before the therapist even saw the drool, and then Uma quickly looked at me, like, "did you just see that?" and then she looked at the therapist, like, "did SHE just see that?" and this quick flash of embarrassment flashed across her face. I just mention that because I feel like it's another strong sign of Uma being "there." Because if she wasn't "there," she wouldn't care whether she drooled on some therapist's shoulder, or whether
anyone saw. But she DID care.
Uma definitely has a long road ahead of her. It's going to be tough and she is going to need to stay strong. That's what I've been praying for and visualizing today. For her to fucking stay strong and to keep that strength. For her to focus all of her anger and frustration (and boredom, even, because it's gotta be boring to be in that hospital room day in and day out and not be able to talk), just to focus all of those feelings on the right side of her body, to focus all of that excess energy on getting all of her muscles strong again. Thank you for your continued prayers! Please keep them up! Honestly, I know they have helped--even the doctors say that patients who have people praying for them do better than patients who don't, they've seen it time and time again. Whatever you believe, however you want to phrase it--I believe that putting good energy out into the universe, good focused energy...it works, it helps. And Uma could definitely use a boost right now. So keep her in your thoughts...THANK YOU, and love to all of you. HUGE love to all of you.
Okay, here's John's much more detailed update:
hello again to everyone,
i am so grateful to all of you for everything you've
done for us, for uma. in the face of all of these
insults to life, we've passed through that phase of
her recovery. one of my least favorite things to do
is use a worn out phrase to express myself...but it's
not MY fault that it's worn out and it happens to be
the absolute truth - we could not have done this
without you. i don't believe she would be where she
is, given the circumstances, without everyone's love
and contributions.
so much has happened these last few days. it's hard to
keep things in order.....
we left st. v's with a lot of activity - the air
crew showed up with a stretcher and all the ward was
moving. so many nurses came out from their patients to
say good luck and goodbye. mary, the case worker,
cried TWICE saying goodbye and gina, the pastoral
counselor, gave both of us a heart-shaped stone. i
think she was the hardest of all to wave goodbye to.
we left before visiting hours began and i'm glad of
that in a way. sitting in the waiting room of an icu,
you really get to know the people who are worried,
scared, angry about what has happened to their loved
one. they all knew that we were getting ready to go
and i had said goodbye to most of them the night
before. just knowing that, for some of them, their
loved may never make it out of st. vincent's was too
heavy for me to face, to see in their faces one more
time.
a lear jet goes about 650 knots at 41,000 feet. we
landed in columbus, ohio and in colorado springs for
fuel. when i found out we were landing in colorado i
called my sister sharon and she met us at that little
airport for a little bit of time. she came out with
her youngest son, jacob and they got to sit in the
plane with uma for a little while. good. everything
about the flight and the transfer went extremely well.
the pilots radioed ahead to colorado and ordered three
pizzas. i said, "wow! each of these pizzas cost
$7,000.00. but you get a free coupon for a lear jet
and stretcher!"
let me back up a bit - 2 weeks ago monday, if you
recall, we were cleared to leave ny. at the last
minute dr. h changed his mind saying, "the dilation of
her ventricles cannot be explained because of possible
shrinking of the brain due to atrophy/stroke. she's
just not draining well and we need a shunt." this
after waiting a week to see if we needed a shunt.
yesterday morning (monday again) he said to me, "the
ct scan from sunday reveals that her ventricles are
the same size as they were BEFORE the shunt surgery.
if she were staying here we would revise the shunt -
do it again. it's also possible that they are enlarged
due to shrinkage from atrophy/stroke.......the
important thing is to get her back to california...."
he also said that he is not particularly happy with
where the shunt ended up in her brain. it is only one
to two centimeters into her LEFT ventricle - but the
shunt STARTS on the right side of her skull. the way
i read this is that they overshot the mark and ended
up not where they wanted to be. to reverse the joke, "
but this IS brain surgery" aren't you supposed to be
able to aim something that you're feeding thru
someone's skull? and, if not, SHOULD you be putting
something thru someone's skull?
to know that 3 weeks were almost completely wasted
there and that they have insalled a questionable shunt
is of enormous pain to me - not to mention what uma
might be suffereing as her "level of csf pressure is
twice what it should be".
so ----- there is a new ct scan being taken tomorrow
morning at the new hospital. in addition to this, they
have all the pertinant ct scans on cd rom from st.
vincent's. my gut and my newfound experience informs
me with an horrific weight that she will feel better
and improve better once the inside of her cranium is
the way it should be. in so many ways the helplessness
seems to continue. i hope and pray the new view of her
condition by the current doctors will add up to better
care for her. i never in my imagination thought that i
would hear completely divergent views about uma's
health from the SAME doctor just one week apart.
that being said - the new facility is, so far, really
kind of amazing. today we had a speech therapist, a
physical therapist, a neurological rehabilitation
doctor and his physicians assistant, a respiratory
therapist, a vascular doctor, TWO social workers, and
a case worker tend to either uma or me or both of us.
these people ALL seemed to know what the other team
members (that's what they call themselves) were doing
and when they would be doing it. EVERYONE seemed
concerned and motivated to get her up and running. i
already mentioned the ct scan tomorrow but there is
also a 'new patient' team meeting wherein all the
above mentioned people plus a psychologist will meet
and discuss uma's case. i had a 45 minute interview
with a social worker today who asked me what her life
is/was like, who she is, what she likes to do, how she
behaves - she wanted to put a human to the facts and
figures. i kind of feel like, if uma doesn't get
better here.......well, you finish the sentence.
despite my my thanks and all the
progress she has made, i feel i owe it to you to tell
you what is going on with her right now. first of all,
the road ahead is going to be very, very hard.
sometimes i get confused watching her or interacting
with her - today when the doctor asked her to stick
out her tongue and did it himself to show her how, she
smiled a fake smile at him. this happened twice. when
he asked her to hold up one finger, she used a finger
on her left hand to press a button on the bed railing.
yet, in new york, when the speech and swallow
therapist put apple sauce on each of the four corners
of her mouth she grabbed each dollop with her tongue
as the therapist mimed it for her. and, today, twice,
as she was seated in her wheelchair, she was drooling
from the right corner of her mouth and i said, "hey,
uma, you wanna wipe your chin" WITHOUT miming it or
indicating it in any way - she immediately wipes her
chin. i don't know what to make of this except to use
the broken radio analogy again - when the wires have
been damamged they may work sometimes and not at
others - until you repair it.
and, later, watching her in such an obviously agitated
state - bouncing or jerking her left leg contiuosly or
itching all over her face for 20 minutes in a row- or
watching her struggle in coughing fits for minutes at
a time, apoplectic with struggle and lack of air and
watching the nurses suction her - it's just too much
sometimes. all i do is hold her hand and/or her
stomach, gently rub her head and tell her, "i know
this is hard but you're doing well......it's almost
over, breathe slow" etc. i hope that DOES help her in
some way but, sometime, i'm just not sure.
right now her right arm is spasmodic all the time and
curls up involuntarily and with great tension, fingers
askew and taut. she constantly leans her head to the
right and just appears to be so weak. and i don't know
if this is because she's been in bed for 6 weeks or
becuase she's suffering from hydorcephalus or both.
i was told today that most acute in-patient rehab
lasts 2 to 4 weeks. but i need them to understand
that, just becuase she is THERE at a rehab facility
does not mean that she is READY for rehab. i must get
them to seriously and immediately address this
ventricle problem. i'd hate to have them spend four
weeks on her and see some improvement and then kick to
out-patient if she's suffereing from a condition that
could be seriously improved with the correct medical
procedure. i reaally hope that after tomorrow's ct
scan they tell me something useful. i grow less fond
each day of vague, 'wait and see' phrases.
so - that's where i am tonight. mixed. i have great
gratitude for being here and great concern for her
future. i feel confident that they will do a good job
with her rehab here and i want to have that confidence
in the neurological diagnosis as well.
if you can, pleae continue to pray for her. i know it
works.
all my love and thanks,
john
Posted by bonnie at 11:31 PM | Comments (3)
March 12, 2007
Today is 12 of 12
So, today is 12 of 12 and so far all of my photos have been of cats. And vodka. And expressions on my face that have to do with trying to get a column finished while wishing sleep would come.
*sigh*
At least I'll win the "most boring 12 of 12" contest this month.
Update: column finished (but I didn't do my usual promotional blast. Just NOT in the mood), Snickers bar eaten (chocolate does not put me to sleep, but it totally should), sun just now starting to show up. *yawn*
Blah.
Bored.
Ugh.
Whatevs.
Posted by bonnie at 6:52 AM | Comments (2)
March 11, 2007
I can't sleep.
And it's not the kind of "not sleeping thing" that I'm used to. It's that really annoying cycle of sleeplessness that I hit once a year or so, where I'm fatigued, mentally exhausted, physically worn down, and READY for sleep... and I can't get any sleep.
Yes, I've tried knocking myself out. I can get about 90 minutes of sleep if I dose up on NyQuil or muscle relaxers or gimlets. But it's not good sleep (and it's not enough sleep), so I figure WHY BOTHER?!? and get up to try and work some more.
But I'm too out of it to get any work done.
*sigh*
It's just annoying.
So, if I come off a little "off," please know that it's the fault of the lack of Zzz at this point. Keith tells me this happens every year or so and lasts a few days, until I just finally hit a wall and sleep for about 20 hours straight.
It has been awhile since I've done that, so hopefully it'll happen soon. Got a few meetings and TO DO stuffs for which I'd like to be past this weirdness. Ah, well... it's not up to me. My bod just DOES THIS sometimes. *sigh*
Posted by bonnie at 6:10 AM | Comments (0)
March 10, 2007
Cricket Fee Showcase Cast Announced!
I am so excited about our cast!!!!
"Official" public announcement (and introduction to the rockstar actors) will come soon. But meanwhile, for the few readers of the Cricket Feet Showcase blog, I dropped a few FIRST NAMES with links so that y'all can do the rest of the math. ;) Hee!
THIS SHOWCASE IS GONNA ROCK!!!
So excited!!!!!!!
PS--Can I OD on chocolate? I'd like to try.
Posted by bonnie at 5:03 PM | Comments (1)
March 8, 2007
Okay, so...
I was just a total a-hole to a guy in page five of this thread over at the Showfax message board.
And I feel both bummed that I stooped and proud that I didn't tell the dork to suck a fart out of my ass, which is what I really wanted to say.
Is that wrong?
Oh... and Keith wanted me to blog about elbow wrestling, which I will do... later. Got showcase stuffs to do.
Posted by bonnie at 1:28 AM | Comments (7)
March 7, 2007
Uma Update
From EriK:
hello friends...there was lots of good activity and progress for Uma today, so much so that john actually sent out three updates, one in the morning, one in the afternoon, and one in the evening. i'm not going to say much here because there's plenty below for you to read from john, but i will say that tomorrow, Thursday the 8th, is John's birthday! So wish him a happy one if you get the chance. ( john.ballinger@sbcglobal.net )
Also, a quick update on the fundraising front...I finally did the math this afternoon, after having not done it for several days, and we've managed to raise almost $37,000 in the last eight days!!! HOW CRAZY AND AMAZING IS THAT? There have been donations made by over 450 people, many of whom don't even know Uma. All of the love is inspiring. It really reaffirms for me that we can do anything we put our minds to. It's true. We can. And nothing should stop us from dreaming big and pursuing those big dreams because life is fucking fragile. If we recognize how fragile it is, we can either live in fear and or we can become stronger in the face of that fragility. I choose "stronger." Like, the other day, the part of me that's a hypochondriac started worrying that a canker sore I had might actually gum cancer, and I worried about it for a few minutes and then I stopped myself and I was like, "DUDE, seriously, no time for that--get the fuck over it." And then the other night, at the theater fundraiser for Uma, right before I went out onstage to thank the audience for coming, I had a moment of I-hate-talking-to-crowds nervousness, but then I told myself, "um, just go out there and talk to them, how hard is that?" And then I was fine. Both of those examples are little things. I guess what I'm trying to say is that Uma is going to need a lot of strength to get through this next chapter of her life--the rehab chapter--and she needs strength from her friends and family too, and I know we're all going to be ready to give that to her, and thank you for that.
Okay, that's all from me tonight. Love you all, and now here are the updates from John!
UPDATE #1:
hi everyone,
uma had a shunt put in yesterday and, after a few
hours in the recovery room came back to the icu and
seemd tired but alert and fine. the dr. said it was a
'fairly uneventful surgery.....that her ventricular
pressure was twice was it should be (21cm vs. about 9
or 10cm) and that this confirms that she needed this
intervention.....that you should be able to travel by
the weekend.'
i checked with the chief resident and he confirmed
that the shunt was placed where he wanted it.
i was able to go with her down to the operating room.
it was nice to be there right up until the moment they
took her back. the whole OR team was very good with
her. somehow, when you get behind those restriced
areas, all the personel of suddenly extremely
professional and compassionate. i have faith that she
was very well cared for.
right now i'm sitting at the starbuck's across the
street from st. vincent's. there is no internet where
i'm staying in brooklyn so this is the next best
thing.
i'm getting tired. marie has organized a schedule of
visitors that began yesterday and this is a really big
help. i find that my level of exhaustion is so high
that i can literally sleep sitting up in the waiting
room or find a short couch somewhere. i got a nap
yesterday for the first time in about a week and it
was great. i felt much more able to be there for uma
and deal with all the legal and medical things as
well.
i hope uma isn't in too much pain and that she feels
better. i spoke again with dharshi last night and she
informed me that it takes aboue a week or so to get
the ventricular pressure down to normal levels so not
to expect that she will suddenly be complete.
please, if you can, if you still have the energy, pray
for her - that this shunt will be a forgotten thing
soon, that it will function without infection, that
she will feel better, that she can go home soon.
i'm going up there now to see her.
all my love
john
UPDATE #2:
hi,
uma was taken out of the intensive care unit today and
put in a regular hospital bed and room. she is now off
of all monitors and only has her abdominal feeding
tube, catheter, and tracheostomy.....no more wires
attached. she still gets moisture from a tube in her
trach. to help break up the residual pneumonia, but,
other than that, she's a regular hospital patient now.
i have come back to starbucks because both the
occupational therapist and the physical therapist are
working with her.
i know it may seem like, to some of you, that there
are still alot of things attached to her....but there
are no machines, no monitors, no incessant beeping of
alarms from other patients monitors, no constant
movement around her bed as the nurses attend to the
other icu people. its very quiet in her new room.
there is one other person in there and she is leaving
today. and....i don't know if ever told you all
this..in the intensive care unit, they don't allow any
chairs. they need for people to be able to exit the
bedside very quickly in there so chairs are banned.
but in the regular room, i get a chair. after about 15
minutes of being in there with her and in that chair,
we were holding hands and both fell asleep. i don't
know if i can express the relief, the feeling of some
normalcy, some distance from the danger, the mark of
progress. exquisite.
so that's the update. i'm going to try hard to get in
touch with dr. h and see when we can go back home.
whatever he says, we'll do but i need to know to make
all the arrangements.....AGAIN.
more soon.
UPDATE #3:
hello all,
i'm so tired - i hope i spell ok.
today we moved her out of the icu and into a regular
room. in physical therapy she sat on the edge of her
bed by herself, extended her right leg (that's right,
her RIGHT leg) 5 times on command while seated. she
then sat in the recliner for about 3 hours before
tiring.
the doctors said they could feel better about the
placement of the shunt in her brain. it is 'past
midline, just into the left ventricle' or whatever
that means. i think it can be moves fairly easily
later (if any surgery is easy) but it is draining and
functioning.
i need to bring to everyone's attention a bit of a
problematic situation. i need to ask everyone,
especially those closest to uma, not to, under any
circumstance whatsoever, tell anyone where she is
going in los angeles. this is a favor to me and to uma
from a legal standpoint. i know it's odd to say in
this forum but, believe me, it very much needs to be
said and, please, complied with.
that being, regrettably said, we move on! and she
moves on! even her RIGHT SIDE! keep your prayers and
thoughts with her please. this is a great transition
we are in right now....kind of like the transition you
might make after having rowed a canoe across the
indian ocean and are now heading for the himilayas to
climb mt. everest. she's a long way from home and a
long, long way from the uma we are used to seeing and
relating to. oh, she's THERE, don't get me wrong, but
she will travel far before there is good function in
key areas.
more tomorrow, which is my birthday. i can't think of
a better present than knowing that uma is progressing.
but, tonight, i feel every hour of my, now, 44 years.
much love and thanks
john
Posted by bonnie at 11:19 PM | Comments (2)
Queen of Cactus Cove ONLINE
Hey everyone,
For those of you who haven't seen the AWARD-WINNING short Queen of Cactus Cove, you can now see the film ONLINE at the IFC Media Lab site.
It's broken into four parts (and you can navigate to each from the right margin of this page) and, as I said the first time I saw it, it's just a freakin' great film! (Yeah, I'm biased, since I cast it, but MAN, it's good!)
Go. Watch. Lemmeknow what you think!
Posted by bonnie at 4:08 PM | Comments (0)
March 6, 2007
Head's up: new breakdown
Hey y'all... no time to chat. Just wanted to let you know that a new breakdown will be going out through Breakdown Services and Actors Access in a couple of hours.
This one is for an AEA 99-seat agreement stage play directed by Mark Wilkinson at the Elephant Space Theatre. It's called Scab and it's seriously cool. Script is already up at the Cricket Feet Casting site.
Auditions will be 3/14 (w/ callbacks 3/16) and the play will run 4/20-5/20. Members of the 4-A's will get $10 a show. Woo!
Electronic submissions only through Actors Access and Breakdown Services. (I'll update this post once the breakdown goes live so that you can link right to it and get to submitting.)
BREAK A LEG, EVERYONE!! :)
Posted by bonnie at 5:01 AM | Comments (0)
March 5, 2007
Who do you think you are?
So, I received an email last week that I was pretty sure would be today's Your Turn.
(As you can see by visiting that link, the email about which I am currently blogging is NOT the email I chose to use.)
Without going into much detail, I'll reveal here that the email's bottom line question was, "Who do you think you are?"
(Y'know, because here I am giving advice to tens of thousands of actors each week in my column, and what the hell do I know?)
So, my first reaction was an ego-based one.
(I don't know many who would read such an email, such a review, such a piece in the tabloids and react FIRST in any way *other* than ego-based.)
But, happily, within about two minutes of having that ego-based reaction, I had a more centered reaction. MY true reaction (I hope).
Because, y'know what? It is *healthy* for people to be skeptical about those who "give advice."
It is a GOOD THING for people to need to see the credentials of those who proclaim themselves as experts.
Thing is... I've never said I'm an expert. I actually totally agree with those who think there are people with BETTER CREDITS out there, whose advice would be of far more value.
BUT!!! Here's the difference! I'm REALLY GOOD at communicating ideas. I'm pretty freakin' brilliant at formulating analogies that drive very simple points home.
And people who have WAY more experience than I have may not have the ability to communicate tips in a way that I can.
Even so, at best, I was a marginally successful actor in a minor market, doing right-to-work state acting gigs (and I always earned more money hand modeling and hair modeling than I did acting or singing).
And now here I am in LA with a whopping four years of casting experience under my belt... but I've been considered an expert on casting since 2000, when I was hired to write a weekly column about casting for Back Stage West.
Hell, I was still pursuing acting back then! (Man, that was a million years ago.)
Anyway, so I got this email and actually agreed with the guy: My IMDB page is not at all impressive.
Doing industrials, commercials, and local theatre in a minor market won't get you a nice StarMeter ranking. Oh, and...
...um, I guess I should expect to be slammed for casting "only never-seen micro-budget films a couple of years ago," when IMDB won't list indie films until they play at festivals.
That said, I've learned to be patient. I know who I've cast in what projects. I know what has been shot. I know that it can take awhile for films to "show up" and...
...believe me, I dealt with the ego-blow of CSA rejection over the very fact that everyone on the committee knew me as a journalist or actor (not as a casting director) and that IMDB showed fewer than the required number of years in my casting credits (despite well over the required number of years actually spent in casting).
Eh, but none of that matters! Because I do my job the same REGARDLESS of how much love I'm feeling.
I am a former actor. I am a writer. I am a casting director. I am a producer. I am a voice for demystifying the entertainment industry.
And I don't apologize for not having achieved a certain level of "cred" as an actor before going into any other of the areas for which I am now paid to have a say.
My point in bringing this up in a blog entry (and part of why it was decided this would not be a good "Your Turn" topic) is that there are moments that you ASK FOR (like, being interviewed internationally, for instance)...
...and then you realize that with the granting of that wish comes the ego-smack of being a more public figure than you were the day before.
(Eesh! And here's where I think this *would've* been a great "Your Turn" topic!)
Actors who pursue this life in Los Angeles (as opposed to in minor markets where "it's an honor to be nominated" is a phrase only uttered onstage at a community theatre event) CRAVE the spotlight at a slightly brighter intensity than those who pursue this life elsewhere.
AND THERE'S NOTHING WRONG WITH THAT.
Some people are born to be more public than others. What's interesting is that some will have a slow enough rise that they can share a bit about what that journey to "public property" is like.
Others will skyrocket and end up in rehab because they can't even begin to get their wits about them. It's all just too much too soon.
So, in that respect, I guess it's awesome that I'm getting what I've asked for in life. And that what I've asked for is a reasonable level of respect for the information that I put out there. Within a reasonable amount of time.
But y'know what? Even if I were never respected for "putting it out there" (hell, even if I were never respected for "what I know"), I'd still enjoy this ride.
I seriously have the most fun job EVER.
I get to populate fictional worlds with brilliant actors who bring words on paper to life. I get to bring amazing people together.
And I happen to know a thing or two about the many ways in which actors can get to the "head of the class" when hoping to stand out somehow.
It's not by being special. It's not by being different. It's by being AUTHENTIC.
And in the end, that's what I hope to be as well.
Augh! I guess all it comes down to is this:
It doesn't matter who I think I am. I KNOW who I am.
And who I am is, quite frankly, many things. (And so so so much of my life has nothing to do with acting, casting, writing... any of the things that define me to so many.)
Yay, me! ;)
It's about who the world thinks anyone is. And where anyone places importance.
To thine own self be true, right?
And beyond that, if you happen to take advice from anyone else EVER, please always keep it in perspective.
We're all just making it up as we go along anyway, in this life. ;) ALL of us.
Posted by bonnie at 4:55 AM | Comments (7)
March 4, 2007
Uma Benefit Update: PAY WHAT YOU CAN!
Another update!
Because we still have a few seats available for tonight's mind-expanding comedy, My Brain Tumor by David Nathan Schwartz, we're now opening those seats up at a "pay what you can" level.
So, if you want to be there tonight (7pm, Elephant Lab Theatre), but were worried about the price, now you can just shoot an email to Erik and he'll take care of the rest.
WE WANT THE HOUSE FILLED WITH GOOD VIBES AND ENERGY FOR UMA!
So, please join us, even if all you can afford is a glass of wine at the reception after the show!
:)
All of the details are here.
Love love LOVE to you all! For UMA!!!
Posted by bonnie at 2:43 PM | Comments (0)
March 2, 2007
Uma Update
Hello amazing people:
I haven't sent out an Uma update in a couple of days because I've been so busy with the fundraising (there has been so much activity!) and I wish I had time right now to send out individual thank yous to each and every one of you because the response has been so overwhelming and generous and amazing. Thank you so much for your donations and for spreading the word. There is a list of all of the donors at theumafund.blogspot.com, please let me know if your name is missing from the list or if you want your spouse/partner listed with you, and I will make the corrections. We will definitely be able to pay for Uma's air ambulance to bring her home, and hopefully donations will keep coming in! There is so much good in this world and we've seen a lot of proof of that this week, so: thank you, thank you, thank you!
John sent out some thank yous to his email list as well, and in case you're not on his list, I'm going to pass his message along here:
EVERYONE,
WITH MY WHOLE HEART AND MY WHOLE SOUL I THANK YOU FOR
YOUR LOVE TODAY AND EVERY DAY, AND I THANK YOU FOR
YOUR DONATIONS. IN EVERY WAY, YOU HAVE MADE IT A
POSSIBILITY THAT UMA CAN GO HOME AGAIN. I CAN'T REPAY
YOU WITH ANYTHING BUT MY THANKS AND LOVE AND SO I GIVE
THEM COMPLETELY.
love and thanks,
john
Uma's friends Erica and Anna are both at the hospital with John right now, which is great. As far as Uma's health update goes, I'm going to copy and paste both of the updates that John sent out yesterday (below), but I'll start with a quick update of my own, since I talked to John this morning.
Uma has not had the shunt procedure yet, and we're not sure whether or not she's going to have it. Basically, they were scheduled to put the shunt in, but then one of the doctors in Uma's team of doctors decided that he didn't think she needed the shunt, and there isn't really a reason to rush the procedure, so they've decided to hold off on the shunt and watch her intercranial pressure for a few days and if things look good and her ventricles decrease in size, then they won't do the shunt. But if her pressure rises and the ventricles stay the same size, that would indicate that she will need the shunt, and they would then most likely do the procedure on Monday or Tuesday. So right now we are waiting. All of this is explained in John's emails below, but the emails are from yesterday and I just wanted to let you know that we're basically still in the same place today: waiting to find out whether or not she needs the shunt.
Uma still can't speak because of the damned tracheostomy (okay, it's a good tracheostomy because it allowed her to have the ventilator and breathe and all, but still, we think she's ready to breathe on her own and talk to us!) and we are hoping that they finish weaning her off of the ventilator soon, and start speaking again. I know that this simple act of being able to communicate will mean so much to her and will help her spirits immensely. It must be so freaking frustrating to be lying in that bed and not be able to talk. Especially because hospital time works completely differently than real world time. Minutes sometimes feel like hours. When we get the trach out and she's able to talk, it'll be huge. Huge!
But in the meantime, we need to keep visualizing Uma's continued progress and send her some good vibes and good thoughts. It's hard to be in California, away from her hospital bed. I just want to give her a big smile and tell her that she's going to get through this. But I was thinking, all of the energy that we have collectively put into the universe for Uma--all of the prayers, all of the good thoughts, all of the visualizations--they have definitely helped, they have definitely manifested themselves in change. There's no other way to explain some of the medical changes that have happened. When Uma had her stroke on Day 14, the doctors said it was so bad that they gave her a 20% chance of surviving the stroke. Then, a few days later, her neurological signs were so good that they said that while she definitely had a stroke, it wasn't as bad as they thought it was... and now her improvements are so good and they don't see any damage in the area where the stroke occurred and they are saying that maybe she didn't have a stroke at all. However the doctors want to explain it, I don't see any other explanation other than THAT IS A MIRACLE. So let's keep up all of our visualizations and good thoughts and prayers. Because they work.
Also, so many strangers have emailed me after having read about Uma on my blog, and so many people have been moved by her story and all of the support, including an awesome man named David Nathan Schwartz, who is himself a survivor of brain trauma. He has a one-man show called My Brain Tumor: A Mind Expanding Comedy, that's running at the Elephant Lab Theatre in Hollywood and was supposed to close on Saturday, but he's graciously offered to extend the run to Sunday night and Sunday night's performance (at 7pm) will be a benefit for Uma, all proceeds going to help pay for her medical expenses. David doesn't know Uma, he doesn't know John, he doesn't know me--he just wants to help out. After the performance, there will be lots of wine so we can get all boozy and I'm probably going to make a little speech about Uma and talk about her progress, and if you're available on Sunday night and want to see an awesome play and be in a room full of people hoping and praying for Uma, come on out. Tickets are thirty bucks and can be purchased here:
Okay, much love to all of you, and here are John's updates from yesterday:
UPDATE #1, sent March 1, 2007, at 7am:
good morning everyone,
i was too exhausted to write anything last night.
apparently there are limits to how much anxiety,
wating, prayer, home-sickness, and helplessness a
person can tolerate in a month.
uma is ok. they did not perform the shunt procedure
yesterday. there was a discrepancy between the head
of neurosurgery and the cheif resident about the size
of uma's ventricles. so they waited and did another ct
scan yesterday afternoon. relative to the previous
morning's ct scan there was no change. what they were
hoping for was a reduction in the ventricle size which
would indicate that her brain is processing more of
the cervical spinal fluid. so.....we wait for them to
decide what they're going to do.
the list of frustrations grows longer - i spent the
better part of 4 hours on the cell phone yesterday
with vaious "agencies' re: her medi-cal. each person i
spoke with had an opinion which differed from the last
person i spoke with. i was also informed by the case
worker here in ny that, now that uma has been here for
30 days, she is considered a ny resident and therefor
the hospital will file a medicAID application for her
to make sure THEY get paid for their services and
that, maybe, she would just do her acute in-patient
rehab here at st. vincents. prior to this conversation
i was informed by cedars sinai that, though the head
of neurovascular surgery has agreed to take her,
unless medi-cal is approved (which can take up to 90
days), they won't receive her.
there is only one feeling worse than seeing uma
immobile in that bed for a month and that's the idea
that we would not be able to go home for a long, long
time. the despair i felt was different than the first
part of this month when she wasn't even conscious. she
is just lying there, hurting, actually hurting now
from a month of pneumonia, catherization,
constipation, immobility, and questionable cranial
health. i've reached a limit here and i would greatly
appreciate your thoughts and prayers for me as well.
uma's friend, anna, came yesterday and stays 'til
friday. erica arrives again today and stays 'til
saturday, i think. i have to be out of the borrowed
apartment by tomorrow night but i think i've found a
place to stay with uma's friend, adam.
as soon as i'm done with this email i'll call a man
that our friend dan knows about his private leer jet
which he rents to university of pittsburgh hospital as
a flying icu. he said he'd be able to work our "fuel
as cost" and maybe some other discounts for us. (if we
have to fly closer to sea leverl due to pressure on
her head, fuel-at-cost will be a substantial gift!)
i hesitate to say any news about uma regarding her
shunt because i just don't know what they'll do. there
has been conflicting information about that for the
last four days and i think we/i just need to be in a
season of prayer and waiting and, hopefully, peace
about it.
suffice to say that, at some point, hopefully soon,
they will either perform the shunt or declare her
shunt-free and then continue on with weaning her from
the ventilator (she continues to make progress there)
and the tracheostomy and get her out of icu and moving
a bit more. the more mobile she is (even a wheelchair
at time during the day) the better off everything will
be for her in terms of nutrition, elimination, and
infection.
yesterday i was telling her about the plane ride and
how it's going to cost about $20k or so....she started
to cry and i said, 'no, no it's ok....listen! erik set
up a fundraising site and in two days we've received
over $15k!.....from over 200 people, some of whom we
don't even know!....and lot's of people (i named some
of them) have gone on hikes around the l.a. mountains
and, when they got to the top, the yelled your name
and for you to get well and come home soon!" so then
she cried some more.....i cried too but, really, i
think she needed to cry. she seemed to be in a better
frame of mind after that - smiling a bit more and
laughing sometime with anna and me. it seemed like
her spirits rose a little yesterday which was nice.
she and i had what i believe were some really nice
moments together about 45 minutes before the close of
visiting hours. she fell asleep listening to brahms
and samuel barber and a quietly left the room.
that's a nice thing to pray for, i think.....for her
to quietly leave that room too. you all know most of
the particulars - her health issues, paperwork issues,
transportation and a new facillity in l.a. - so,
please, from my heart i'm asking you to pray, in you
own way, for her to quietly leave new york just as
soon as is humanly (or otherwise) possible.
and, for me, pray for patience.
love,
john
and here's UPDATE #2, sent March 1, 2007, at 1:18 pm:
hello,
i went in and told uma the news - that in five to
seven days we would probably be on a plane to l.a.
this seemed to brighten up her spirits.
her friend erica just arrived so now erica and anna
are here. i may take some time now that they can both
alternate visits (and alone time for uma, too) just to
take a nap or a walk.
the doctors have decided to wait, probably over the
weekend, to give her the best chance of not needing
the shunt. they will monitor her neurological signs,
looking especially for lethargy or reduced
movement/response, and, take another ct scan on sunday
nite/monday day,review that and make a decision. it
would be great if she didn't need it but it's not the
end of the world if she does. if she does need the
shunt, they can do that on monday or tuesday and,
barring any complications, she would be ready to go 2
to 3 days after surgery.
i feel good. i know the road is long but i can see the
road down there at the end of this tunnel now. god is
good. you all are good. uma is good and getting
better.
i won't stop writing to you or asking you for prayers.
.....for instance......still there is pnuemonia,
blood, weakness/paralysis on her right side,
possibility of stroke/shunt/rebleed, rehab,
depression, etc.
but, for now, i feel a huge sense of gratitude and
relief and i thank you and god and the doctors here
and uma for all the effort.
much love,
john
Posted by bonnie at 11:40 AM | Comments (1)
March 1, 2007
Uma Benefit Update: LOWER PRICE!!
Hi Guys,
This just in!
WE'RE LOWERING THE PRICE TO $30 PER TICKET!!!!
(With the outpouring of generosity we've seen at TheUMAFund.blogspot.com, we weren't sure what to expect with the ticket sales... but they're aren't going as fast as we thought they would... so we're dropping the price!)
Hope you'll join us Sunday night for an amazing, heartwarming medical-miracle of a show!
Love,
Bon, Erik, David... and the whole UMA TEAM!
PLEASE SEE THIS BLOG ENTRY FOR ALL OF THE DETAILS... AND LINKS TO BUY YOUR TICKETS!! Thank you!!
Posted by bonnie at 5:20 PM | Comments (0)