some Uma love

FROM BONNIE:

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

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

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

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

I JUST GOT THIS UPDATE FROM MY MOM:

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

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

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

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

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

Joe's column about Uma

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

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

*

THE BELL CURVE:
Courage and hope despite odds

By JOSEPH N. BELL

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

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

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

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

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

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

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

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

Thus started the journey of these three remarkable people.

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

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

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

One minor setback after another, somehow dealt with.

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

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

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

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

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

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

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

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

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

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

The latest update:

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

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

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

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

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

(c) She can read and comprehend written words.

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

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

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

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

MONDAY NIGHT:

Hi everyone,

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

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

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

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

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

TUESDAY NIGHT:

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

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

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

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

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

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

Love,
john

a very nice, relaxing saturday night

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

Dry erase board "tests"

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

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


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

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

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

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


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

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

a few updates, kinda behind on posting...

I’m on a writing deadline and I’ve been working pretty strenuously which means I haven’t been out to see Uma since Sunday, and I haven’t even posted an Uma update from last weekend, and I’m going to see her again tomorrow (Friday) and I really want to post an update before tomorrow because if I wait until after tomorrow then I’ll have all of these NEW things to say and maybe I won’t get to last week’s update. And there are too many good things to report from last weekend that I don’t want to skimp out on any of them. Even though it’s 2am. I just drank a really huge thing of Coca-Cola, so I think I’ll have sufficient energy to write a long update right now. Okay, so. Here goes.

I’m gonna do it list-like, since this blog hasn’t seen a list in a while.

1. I spent a lot of time with Uma last weekend. She's doing incredibly well, but I don't think she knows how well she's doing because I don't think she can relate to just how dire her situation originally was. She tries to talk and she can't find the words and then she gets incredibly frustrated. But there was a time not so long ago when she wasn't even TRYING to talk, and then there was a time not too long before that when she was in a motherfreaking coma. So not being able to find the right words right now--even though it's incredibly frustrating for her--it's okay, because the words are in there, and her brain is going to retrain itself to find those words.

2. That being said, it's really frustrating and hard to watch her being frustrated. John is amazing and so in tune with her and really good at guessing what she's trying to express. Thank god for John. Seriously, I have a bottomless bucket of love for him because he's just so GOOD.

3. She has certain phrases that she can say really well. She says them so well, in fact, that she gets stuck on them. I think what's happening is that she gets stuck when she's really TRYING to express herself, and these certain words and phrases that she's gotten DOWN are words and phrases that she doesn't have to think about anymore. So they come out easily, and then when she starts TRYING to express herself…that's when the word clog-up occurs.

4. Like the phrase "I want." She has that phrase motherfucking DOWN. She can say that phrase like nobody's business. But then..."I want...I want...you want...I want...we want." She gets stuck. On Saturday, I was sitting with her and she started in on the "I wants" and I was trying to find the rest of the phrase for her..."something to drink?" No. "To go to the bathroom?" No. "To go for a walk?" No. "To go home?" A look of frustration because YES that's a definite want, but NO that's not THIS want. I rattled through MANY possibilities, and then I stumbled upon: "To watch an episode of Six Feet Under?" And finally Uma gave me the most exasperated "YES" ever in the history of exasperated yeses.

5. So we watched an episode of Six Feet Under. It was the second episode of the first season.

6. It felt so nice to watch Six Feet Under with Uma because this is a show that Uma and I used to watch together when it was originally on, when we lived together. We didn't have HBO so my mom would tape the show for us and then we'd get the tape and sit in our respective bunk beds and quietly cry together because just about every episode would make us cry at least once.

7. And one of the things that I love about watching TV with Uma is that we’re both kind of obsessive when it comes to our TV viewing habits (kind of?) and we know to give each other some space at the end of something like an episode of Six Feet Under. To, like, let the waves of emotion pass.

8. This particular episode that we watched on Saturday naturally made both of us cry. And that felt normal, and nice. Normal isn’t something that we’ve felt a whole lot lately because there’s not much normal about this crazy brain roller coaster that Uma’s been riding. We cried at the very end of the episode--when Brenda tells Nate and David to meet her on a particular bus and then once she has them on the bus she tells them it's the bus that killed their dad.

9. Tears. Gushing. We were babies.

10. Shout out to Sezin, who sent Uma the box set of the entire Six Feet Under series. Such a wonderful gift, and one that will be savored and watched over and over again. Thank you, Sezin. Uma is definitely enjoying it--I believe she's on episode five now. It really helps pass the time in the hospital to be able to transport to the Land of Alan Ball for a while.

11. Oh, and Claire and Ruth both made Uma and I laugh several times. How freaking good are Lauren Ambrose and Frances Conroy? So good.

12. The recreational therapist plays card games with Uma, and Uma gets into them. She loves playing card games anyway, so it's kind of nice that card games are actually THERAPEUTIC. Who knew? On Saturday, she played Solitaire for a while, and then Zack Graham came by for a visit, and Marie and I were both there, and the therapist suggested that we play a game of Crazy 8's so that everyone could play, and Uma was into that idea, so the therapist dealt out the cards and we embarked on an incredibly competitive few games of Crazy 8's. We had fun (except Marie totally cheats) (and I know that when she reads this she is going to get defensive and say that I'M the one who cheats, but she'll be lying) (SHE'S the cheater).

13. There was absolutely no transition between my "Lauren Ambrose and Frances Conroy are so good" comment and my introduction of the recreational therapist. Sloppy blogging.

14. But I realized I’d gone on long enough about Six Feet Under. I mean, come on. Move on.

15. Oh my god. The food. I have to talk about the food they feed Uma at the hospital. So gross. I mean, it's getting better now that she's eating solid foods and no longer stuck with the pureed goo. But still. Uma is going to be so happy when she gets to eat GOOD food again. Food with flavor.

13. The word on the street (from John) is that Uma’s going to be making pizza in her occupational therapy session tomorrow (Friday). That should be fun.

14. But back to what she’s been eating, they give her really bland hospital food, and when she was eating lunch last Saturday there was a piece of bread on her tray and she was about to eat it when she grabbed the sugar packet. She couldn’t open the sugar with just her left hand, so I opened it for her and then she poured all of the sugar on her bread and ate this piece of bread like that. I was totally perplexed because I’ve never seen Uma eat a piece of bread like that and she’s never really been much of a sugar person, but John told me that she used to eat her bread like that in Australia. Apparently it’s an Australian thing. So that’s new to me, and now we just have more proof that Uma has extremely odd eating habits.

15. Speaking of sugar, Marie sent me the following text message a couple of days ago: "I'm in the grocery store and just had a panic moment with I realized easter was over. I am buying fifteen cadbury eggs." A little backstory: when we were in New York, Marie and I discovered that we're both freaks for the cadbury egg. We love the cadbury egg. We would both marry the cadbury egg if it was legal. And then we would eat the cadbury egg, that's how much we love the cadbury egg.

16. So then I text messaged Marie back and asked her to buy me fifteen cadbury eggs as well, because what if they're all gone by the time I get my own lazy ass to the supermarket? That just wouldn't do.

17. I like the image of Marie buying 30 cadbury eggs at the supermarket. I was about to say "it's a really sweet image," but then I realized the pun and decided against saying that.

18. I was talking to Uma and I told her that she was my hero. She gave me the fakest smile ever. I mean, THE FAKEST SMILE EVER. So then I asked her, “you don’t want to be anybody’s hero, do you?” And then she gave me a real smile, a warm smile, the kind of smile you give someone when they really get you, and then she said, very clearly, very firmly: “That’s right.” So I told her, “okay, no worries, I won’t call you my hero anymore, but you’re doing really fucking good and I’m not gonna stop letting you know that.” Maybe she doesn’t want the pressure of being anyone’s “hero” and I totally get that. But she’s a strong mofo and it’s good to remember that, and to remind her of that. She’s going to need that strength as she her road of recovery.

19. I got to be with her while her therapist took her for a walk up stairs again for the first time. And when I say that the therapist “took her,” I don’t mean to imply that the therapist was doing any of the work for Uma, because Uma was definitely doing all of the walking. She walked up and down two flights of stairs and it was awesome. By the time she got back downstairs, she was completely exhausted, but her therapy session wasn’t over. She still had to do exercises in the therapy room, including three sets of ten leg presses. The therapist asked her to count off her leg presses, which Uma did, and while she was doing her second set she got visibly tired…so as she was counting, she went “one, two, three, four, five, six…(pause)…ten.” And then she looked at the therapist as if to say, “you were really paying attention?” And then the therapist said, “nice try” and made Uma finish out the set. But what I loved about that moment was that Uma was being mischievous. She was tired and she was totally trying to trick her therapist into letting her off the hook for a few of those damned leg presses. She wasn’t forgetting the numbers, she was trying to beat the system. And that shows signs of the kind of cognitive thinking and comprehension that we want, that we love, that we need.

20. Please keep praying for Uma and for continued neurological improvements. For her to find her words. She needs her words. All of ‘em. Because she’s good with words. In all of the years that I’ve known Uma, I’ve seen her grow a lot. I think she went through a long period where she didn’t really trust the world and it’s like, in the last few years, she started letting the world back in, trusting it again. And she’s opened up in a lot of ways, and she’s gotten to a place where I think she’s really able to accept love and to give it, fully, in a heart-on-her-sleeves kind of way that’s completely honest and raw and true. So when I pray…which is something that I never used to do, but that I do pretty much all the time now…when I pray (to the universe, to god, to all of the collective energy that we put out there), I think about all of the love that I’ve seen Uma put out there into the universe…and I visualize her being open to all of the love that’s coming back to her right now during this crazy, weird time…and I continue to say the refrain that I started saying back in New York, all of those many, many days ago when Uma was in her coma: “Please let Uma Nithipalan have a full neurological recovery.” I visualize her brain finding new channels, new ways to get those words out…the words that we all know are there, we gotta keep visualizing them coming out. And I pray for her to have strength, and for John to have strength, because we know this road to recovery is going to be long (but there’s a road!) (and we weren’t always sure there was going to be a road!) (and so that’s something to celebrate every single day!)…and I hope and I pray that this will whole experience will make Uma stronger, will solidify the feeling that the world is a good place, a place that we should keep trusting. That even though we’re sometimes thrown these incredible curveballs—that even though her life has taken this crazy detour—all of the energy and goodwill that’s been manifested since that scary day at the end of January, it’s all ultimately good, and we’re all going to be stronger for how we catch that ball and run with it. I don’t know anything about sports, so I probably shouldn’t have tried to use a sports analogy just now, but what I’m trying to say is that, maybe, through all of this, we’ll all become a little bit better at expressing our love. I realize it’s the middle of the night and I’m on a whole lot of caffeine right now, but that’s really the ultimate lesson that I feel like life’s been teaching us lately.

I should go to bed now. I’ll have more Uma updates soon, I promise. In the meantime, here are two very detailed updates from John. (I really wish there was a gay Ballinger, by the way.) (I think maybe I’ve said it before, but it’s kind of a shame, because I really want to marry into the Ballinger family.)

JOHN’S UPDATE FROM APRIL 7

Today is April 7th. 67 days after Uma’s “insult” as
they call it. I’ve been spending virtually all my time
at the rehab place since we arrived back there from
the shunt revision. But today, Erik and Marie are
giving me a much needed break. I’ll be gone from there
about 7 hours and will be cleaning our house and doing
the laundry because on Monday the therpists will drive
Uma home where I’ll meet them and we will look at what
needs to be done or obtained for Uma upon her
permanent return, which will be most likely on April
17th.

Some of the things she is doing now include but are
not limited to:
walking with a cane to the bathroom
walking all the way back from the PT gym with a cane
and a brace and virtually no help from the therapist
eating regular food (her g-tube is out!)
spelling and reading many words
saying some words
looking through her new eyeglasses (“wow” was her
response upon “seeing” again)
beating people at card games
getting extraordinarily frustrated with her speech
problems - this is not really bad - imagine what it
would be like if she wasn’t AWARE that she wasn’t
speaking well? THEN where would she be?

So - she has really come a long way in a short time.
What is coming for her next is, after another week to
ten days of in-patient therapy, going to the same
facility for out-patient rehab AND having this
augmented by our own private efforts which are being
worked on now. She will most likely have her
tracheostomy removed early next week which I’m sure
will make her feel much better about everything. And
we will live at home again soon. Her rehabilitation
will take place for many years in some ways but the
bulk of it, the foundation of it will be done over the
next 4 months to a year. Out idea now is to begin very
intensive speech therapy and physical therapy for her
right arm and leg as soon as possible. The pace she is
going at now is appropriate for her physical health
but she is recovering quickly and soon will be able to
sustain more therapy throughout the day. The problem
is that the county doesn’t provide for that intensive
of a program so, as I said, we will look to augment
this to the extent that she can handle it.

I look around our house and see all the physical
things that make up our life together - the little
things like a receipt for a dinner we had, the new
spice rack she had bought while I was on tour, notes
on the refrigerator, her keys and cell phone,
photographs and things hanging on the walls that she
put up, the new color on the walls in the den that she
picked out and painted, where she left her nightgown
before flying to New York on January 30th......and I
assign great meaning to many of these things as
physical representations of my memories of her and us,
both every-day and specific to events. The memories
occupy and physical and electro-chemical place in my
brain. All arguments to the contrary aside, MY brain
is not damaged, but hers is. And I wonder what she
will remember....will she rememeber the necklace I
gave her? or the one she gave me? or the play she was
in that won her the LA Weekly award? or any lines or
expressions from that play? Will she remember how long
it took her to breathe again after I asked her to
marry me? and so on......

I won’t know this for a very, very long time and yet I
have based my life on relating to my experiences and
relying on my memories to guide me physically,
emotionally, and spiritually. I was talking with my
brother about this last night. Maybe the essence of
things is what I’ll lean on for awhile. Her essence
and personality seem very, very much to be there and
intact. Her sense memory of me and trust in me seems
to be just as present. But exactly where are her
memories? Does it really matter? I don’t know and I
don’t know how I’ll be letting go of this, at least
temporarily, but I will have to let it go along with a
lot of other things, too.

Maybe that’s enough of the diary....there are some
actually funny moments too that I should share.

The other night she seemed very, very upset by
something and I couldn’t tell, nor could she, what it
was. After asking the basics: do you need to go to the
bathroom? does your head hurt? etc. and getting
nowhere she began and kept saying, “YOU WANT IT!
YOU......WANT!” and I’m thinking that she is thinking
about some huge life issue along the lines of - I want
her to live and keep working but SHE is in despair.
Suddenly, she sits bolt upright and points to a pillow
at her feet that I had casually set there a few
minutes before. I said, “You don’t want the PILLOW!?”
and she, exhasperated nods, “YES!” .....so I toss the
pillow across the room and we both laugh. Later I
remembered that she doesn’t like pillows without a
pillow case - this one was case-less.

A few nights ago we were lying in the bed together
watching a dvd and began to look in each other’s eyes.
It was just one of those moments between a couple that
happens all the time but that is the real glue that
binds you together. I asked her, “Are you afraid?” and
she immediately and very forcefully said, “NO!”. The
look on her face was so fiercely clear I actually took
my face a couple of inches further away from hers. I
was startled by how much power there was in what she
said. I guess that’s the second time I got a very
purposeful ‘no’ from her.

Last night was the first time we, she actually, walked
to the bathroom. All I do is very lightly hold the top
of her pants at the back in case she slips or leans
too much. Otherwise she negotiates the whole thing.
This is just going to get better and probably at an
exponential rate for awhile. I’m sending a video of
her walking in the hallway with a physical therapist
to Erik’s blog site.

http://myyearofnewthings.blogspot.com/

Bear in mind that this was captured AFTER she had
already walked about 200 feet. I couldn’t get a good
shot without her looking before that - so in this
video she is already a bit tired. The LAST time she
did this she had to wait two or three times for about
a minute to catch her breath. This time she didn’t
stop.

....so we continue and life has completely changed for
both of us. We may go back to doing many of the things
we did before but on the inside and the way things are
perceived, that seems all different now.

Tomorrow is Easter and Uma will rise up and walk :)

love

John

AND HERE’S JOHN’S UPDATE FROM APRIL 11

hello everyone,

been a while, i know. so much has happened it's hard
to know where to start.

uma had a home visit on monday. she and two of her
therapists met me at our home to go over any changes
that need to be made for her. she walked up the stairs
and came in thru the front door on her own steam. very
nice. it turns out we didn't need to make that many
modifications because she is fairly mobile. Yesterday
my brother wayne and i made all the mods needed. it
took about 6 hours and colleen and sherry watched uma
while he and i worked.

also - yesterday morning dr. pasey took uma's
tracheostomy out. we got to his office - he had never
seen uma before this - and he was talking with her and
her erstwhile speech therapist and equivocating on
whether or not to take it out saying that her voice
sounds too soft etc. i stepped in and talked him into
it. he took it out and was, i'm not kidding you, 6
inches away from her adam'a apple cleaning the opening
and didn't notice a sutuer that was there from new
york which the previous ENT didn't take out. I said,
"wow, there's a suture there." he says, "no there
isn't." i said, "yes, there is." he says, "well, it
would help if i put on my glasses..." then he saw it
and took it out. AGAIN my question is, "what if i had
not been there." answer: she would STILL have her
trach in and STILL have a two month old suture in her
neck. amazing.

i found out on monday that there is most likely a gap
in time for her between in- and out-patient therapy
here. for some reason - back log of patients or
something - she will have to wait at least a month and
possibly two to get into the out-patient program.
so......i'm scrambling around trying to line up
private speech and physical therapists for her in the
interim. it's not easy - there are not a lot of speech
therapy options so far. what i'm truly looking for and
asking for is help with this. erik has done some
online research and given me a lot of names and i am
calling them. if anyone has any experience with this
or knows of any programs or people that could help,
please email me as soon as you can. i would rather
have options open to us than not and i honestly
believe it is medically reckless to start and then
stop this kind of therapy.

she is walking and getting around much better and is
understanding far, far more than anytime since this
happened. but her brain was so hurt, so incredibly
hurt......her right arm is still not responding and
her speech function is very, very slowly returning.
the research i've done indicates that the amount of
healing in these areas she does in the first months
indicate what her long term outlook will be. i would
love to be corrected on this, believe me. and i need
help with this, too.

i'm asking again for your spiritual help for uma. i
really believe she has come this far due to the prayer
and love sent her way by all of you. she needs this
again - just as much as before. please send all that
love to her beautiful mind and beautiful spirit -
specifically for her right arm and her speech. i would
love nothing more than to have the people at our
facility be even more amazed at her progress in the
very short time we have left in in-patient. please
get your sprirt in the place you need for this and
send the love and prayers. i see her covered in
prayer and love - each movement of her little body,
every effort by each therapist, every visit and every
act of help for her (and even me) i view as a prayer,
as a gift of love. you should see her laughing at
something or sleeping so soundly after a long day of
work or even being seriously irritated by yet another
round of vital sign taking. she's incredible. the love
she has received from all of you is incredible. if it
felt good to do it before, feel good again.

last night we were working on word fun durnig
commercial breaks of 'dancing with the stars'. i was
taking her thru 'ring', 'hand', and 'smile'. we said
those words and then i pointed out what they referred
to. this is hard for her......i would hold up her ring
and she would say 'hand' etc. but at one point when
we started over durning a commercial, i held up the
ring and said, 'what is this?' and she says, smooth as
can be, 'it's a ring' not without some incredulity.
that moment of clarity passed and we returned to her
not quite getting the concept. but the work is good
and she does as well or better with me than with her
speech person there. honestly, i think the speech
program there just doesn't add up to the words on the
sign outside the hospital, "state of the art medical
rehabilitation".

this morning after breakfast we were doing her
exercises for bed.....raising her hips, range of
motion on her right arm, etc. these things hurt her
but she does them anyway. she is trying so hard with
all of this.

yesterday i saw her outside with the physical
therapist walking on a slanted grass area that was
very uneven. she did it well.

whenver i talk about going home for some days off,
just cooking together, relaxing and watching dvds or
whatever she just moans and sighs a bit. she really
misses her life. it's been a long time.

anyway - i wish i could get internet in the hospital
room. i have blue tooth on the mac and the cell but
can't seem to get that together yet. any ideas?

i thank you all in advance for all the love you will
be sending to her. it will heal her.

all my love, john

Latest Uma update from my mom

FROM MY MOM:

Uma is scheduled to go home a week from today. I spent a few hours with her at the rehab facility today, and there is such a wonderful sense of Uma getting ready to leave this place. There are no more tubes in her, she’s eating solid foods, walking remarkably well with her cane and leg brace, and looking incredibly tired of living in this place filled with hospital noises and people who are nice enough but not really part of her life and not really tuned into the fact that she intends to—and is very capable of—a complete recovery. You can’t really blame people who work in this environment for aiming for minimal results that will enable people to do basic things like feed themselves and go to the bathroom without help. That mentality would be hard to resist if you spent your entire worklife with the “disabled.” But that’s just not good enough for Uma, and everyone who knows and loves her knows that—especially John, who spent the day getting their apartment ready for Uma’s return and was so elated with the progress he made with help from his brother, Wayne.

Uma’s friend, Colleen, was there when I arrived today, and I was wearing my Uma T-shirt and it felt great to be a part of the “Uma team.” We are all going to be needed for quite some time, because Uma has a lot of work to do to achieve that full recovery and she and John are going to need a lot of love and all kinds of support. There certainly has been no shortage of that so far, and I have no doubt that whatever they need will somehow be provided.

Today, while Uma and I were leafing through entertainment magazines and watching “Ellen,” I stole a glance at her lovely profile and then remembered how she looked in the ICU in New York. Now that she is back in so many ways and taking steps every day toward that full recovery, it’s easy to lose sight of how miraculous it is that she is even breathing. But miraculous it is, and I know that a great many people who have kept Uma in their thoughts and prayers—some of whom she has never even met—have helped her get this far. Someday she will fully understand the depth and breadth of love in her life as she learns about all that has happened since January 31. What an amazing thing it is going to be to watch her heal and grow as she reclaims her life in coming months.

No one likes to spend time in hospitals, but when John returned today and it was time for me to go home, a part of me didn’t want to leave. There is something very special about being in Uma’s presence. Her beauty is profound, even more so now that she is having to reach deep inside herself for the strength and determination to confront all the new challenges in her life. We clasped hands as I was about to leave today. I didn't want to let go.

some Uma videos

Check it out, Uma's Year of New Things is upgrading from still photos to video! I thought I'd post some of these very short videos (curtesy of John's cell phone and my cell phone) so you can see some of the amazing progress Uma's been making.

First, a video that John took yesterday (at least I think he took it yesterday) (regardless, it's recent). It shows Uma walking down the hall with one of her physical therapists. She's moving kind of slow because this was the end of a long physical therapy session.

(And remember, just a month ago, she was barely moving her right leg AT ALL) (so all of this movement really is quite wonderful and miraculous and exciting)

Walking on April 6th:



And to put the above video into some perspective, here are a couple of videos taken on March 24th that show Uma getting out of her wheelchair and walking. As you can see, her steps are much more tentative (and she needs a lot of help, as opposed to the above video where she's doing everything on her own and the physical therapist is acting more as a "spotter" in case Uma loses her balance).

Getting out of the wheelchair on March 24th:



Walking on March 24th:



And a sign of even MORE progress: Uma walked up and down two flights of stairs today! I took some video of her climbing the staircase, but for some reason my phone is refusing to email the videos to me right now, so check back later and hopefully I'll have them posted.

uma love

a quick, little update: they took out her g-tube yesterday. that's the feeding tube that went directly into her stomach, which annoyed the hell out of her. (she would keep trying to scratch at it and pull off the tape that was holding it on.) the fact that another tube is GONE is huge, awesome. and they've said she's ready to eat more solid foods, which is also exciting because the pureed stuff they've been feeding her is kinda gross.

i'm in the midst of a big writing project, so that's why my updates have been sparce recently. i'm spending a good chunk of time with uma tomorrow, though, and i'll have more updates then.

April 4th, Uma Update

Hello everyone...here are the latest Uma updates...from my mom and from John...much love to all of you...xo, erik

UPDATE FROM MY MOM:

I spent a few very special hours with Uma today, and it was wonderful to walk in and see such an enormous difference in her since my last visit a week ago. I know she is very frustrated with what must seem like incredibly slow progress to her, but the fact is, she is making dramatic steps forward. When I arrived, she was heartily eating a very boring meal of pureed food. Even though the food wasn't exciting, it must be thrilling to be getting back the capability of eating rather than having liquids poured into you through a stomach tube. And she will probably begin eating solid foods this week, so please visualize her swallowing with no problem and convincing the doctor that the stomach tube can be removed.

I shared a guilty pleasure with Uma today--watching soaps. I got a big smile when I teased her about getting me hooked on soaps. It is so easy to get caught up in the problems of those beautiful people on the screen. They are so beautiful that you can't help but enjoy their suffering. For Uma right now, just watching is part of getting back a sense of normalcy in her life, because she has long been a soap fan. We enjoyed a relaxing hour of TV before the occupational therapist arrived. One of the big focuses today was trying to help Uma strengthen her right arm. She got very frustrated when she was unable to move it, but then the therapist explained that just leaning on her right hand would help strengthen her muscles--that this is a beginning, and many patients in her condition have recovered the use of their arm. Uma seemed to be reassured by that. Her therapy also included a bit of cleaning in the kitchen, and she did a great job scrubbing the countertop. The occupational therapist works on helping Uma function in many practical everyday ways that will help her to be independent when she leaves the hospital. Uma seems to be responding to this therapy very well--a sign of how eager she must be to get home.

Next she spent an hour with the speech therapist, who had her counting and working on pronouncing words. The therapist explained that Uma is probably not able to understand complex sentences right now, but does grasp key words. So we can learn to emphasize the main idea of a sentence and keep it short when we speak to her. She does seem to understand a great deal of what is being said to her. She is also gradually finding more words to express herself, but the inability to put her thoughts into words is probably her biggest frustration right now.

John is keeping a detailed diary of her day-to-day activities and visitors are adding their messages to this journal. It's becoming a beautiful record of her recovery, and it's very helpful when the nurses come in and ask questions about Uma's activities. One nurse today said she's never seen a patient with so many visitors. And all the therapists comment on how incredible John is. He certainly has their attention--they know he's closely monitoring everything that happens, or doesn't happen, and I'm sure that's making a difference in her care.

In the midst of all of the hard work Uma is going through, and all the frustration, there is that beautiful smile. Her sense of humor is very much intact, and what a joy it is to see her face light up when something amuses her. That, more than anything, tells me she is farther along than we can even see. Each day is filled with small steps forward that will all add up to big steps down the line. It is a privilege to be a part of Uma's journey. I so admire her courage.

*

[a note from Erik: When Uma's finally able to use the internet again and she starts reading these updates, she is going to be so pissed that my mom outed her as a soap lover. But then again, I don't think she was ever very good at keeping that info in the closet. So maybe she won't be pissed. Either way, it'll be exciting that she's on the internet away, snooping and such, so I'm cool with her being pissed about the whole "out as a soap lover" thing.] [Also, while we're on the subject of loving soaps, I'll come out of the closet too and admit that Uma got me hooked on One Life to Live. Ohhhh the travails of Todd, Blaire, and Star will never be boring, no matter how many times Todd betrays Blaire and Blaire takes him back again.] [If you're also a closet soap lover--god, that phrase makes it sound like you like soaps that clean closets, not secret lovers of soap operas--anyway--if you're also a secret lover of soap operas, then take comfort in the fact that you're in good company, and next time you watch your soaps, visualize Uma curled up on her couch at home, fully recovered, enjoying those ABC soaps completely openly.]

*

UPDATE FROM JOHN:

hello everyone,

i honestly can't remember the last time i wrote or the
last time i was home. i've been staying at the
hospital over night and, since uma is now becoming
what they call a "fall risk", I've been finding it
difficult to go home.

the work she is doing is really good. she is improving
everyday in every area. today i watched her walk on a
treadmill with help from the therapists - but not very
much help at all. and then she walked back from the
physical therapy gym to her room - about 50 yards -
with her cane and a small brace on her right leg.

she has been eating orally since friday and had had
her tracheostomy "blocked" since monday evening. it
looks good for her to have the feeding tube taken off
late this week and possibly even the trach.

one of the problems with having been around there so
much is that i have, in effect, 'trained' the nurses
to rely on me to do all the transfers to the bathroom,
much of the maintenance of her airway, feeding, and
monitoring her. the other problem is that i'm now
needing to get away to work occasionally and also just
to get away. erik has been great, as usual, in helping
to get me some help during the weekdays and weekends
so that i can leave. but i have a specific request -
monday, april 9th i need to do a job that will take me
away from the hospital from about 3:30pm to 7:30 pm.
is there anyone who can come by then to make sure she
doesn't try to walk away (don't laugh - that's what is
meant by 'fall risk'.....she sometimes just tries to
get up from bed or her wheelchair and walk!)

also- along the lines of specific request - we're
looking now for world class speech and physical
therapists to augment the out-patient program she'll
be on. these specialists can be in the form of
private, in -home workers, or in the form of another
facility here in southern california. what we need
are recommendations from people who've had some direct
or even indirect connection to neurological or
post-stroke rehabilitation. the reason we're looking
for this is that the county system will only give us
so much per day and per patient on these crucial
issues and uma can accelerate much faster in these
areas even now. the work she is doing now is truly
great but we want to let her rebuild herself with no
limits if at all possible. please let me know and i
thank you in advance.

she is very clearly "in" her body - that is ....uma
exists much as she was before. the problem is that her
words don't work. she has aphasia. they are very, very
slowly coming back but the problem is that she still
has an expectation of using language....her
intelligence remains but her words are, for the most
part, gone. each day she seems to be able to follow
more of a conversation and more commands from staff
but she, as yet, can't SAY what she wants at all.
(except for 'i want pizza' which i taught her to say
when my sister sent one to the room. she tasted a bit
of it. funny how that phrase stuck with her so easily)

she can become really frustrated by this...to the
point of tears and real agitation. she can read quite
a bit and organize sentences via reading comprehension
but this has not yet translated into the spoken word
for her.

other parts of her mind seems to work very well.
sometimes something happens with us that is truly
funny - not like a joke or funny sound or accent or
sight gag but just an everyday occurrence .....putting
your arm through the wrong sleeve of a shirt etc. and
she laughs....no cues, no words. two days ago we
played the card game 'war' with the recreational
therapist. basically each player draws a card and who
ever has the highest face value takes the hand. uma
presented as someone with no problems at all. the only
sticking point was when there was a six and a nine
drawn in the same hand......she took a bit to
distinguish the two.

she had a cast on her right arm to reduce spasticity
and this now off. that thing weighed almost as much as
she did! and they've begun again with electrical
stimulation for that arm.

i just keep on it and keep pushing with all the
respect i can. we all get along very well with all the
staff and nurses. pretty soon there isn't going to be
anything for the nurses to do for her anymore. but the
discharge date is somewhat flexible - if she is doing
very well, they might keep her an extra week.

i saw the results of the follow-up ct scan yesterday.
her ventricles are smaller and look more like
ventricle are supposed to now.....sort of butterfly
shaped. they will most likely improve still. she looks
to have had a lessening of swelling and infarction but
these things did take place. techinically, after the
aneurysm, she suffered a stroke.

her character and stamina are amazing given what she
has been through. she really is the strongest person i
know. the challenges ahead for her are monumental. to
hear that she can now walk a bit, or eat some, or talk
some is very encouraging. to see it first hand each
day tells a story of many, many months and even years
before she is done working on this injury. every day
is huge - there's just no way around it. each day is
so large in every possible way for both of us. this is
the highest level of living i've ever experienced and
it can be grueling. it requires a level of stamina i
didn't think existed in me but, somehow, it's there.

i'm just thinking now of how many prayers there have
been from all those different people, many we don't
even know......it helps me to view this, as my father
said to try and do, as a gift. it's hard, believe me,
but i think this is the right path to take. how we
respond to these situations is the key to it all i
think.

i thank you all, in advance, for praying for her mind,
her spirit and her body to heal (a moment of bravery
coming....) COMPLETELY!. keep hoping and loving.

love,

john

ALSO FROM JOHN:

hello again,

forgot to mention the following links again. the first
is erik's blog spot - very nice. lots of pictures and
good perspective on all of this. the second is a place
where you can actually buy a t-shirt or other item
that has different versions of 'team uma' or 'i love
uma' etc. on it. that sight was set up by our friend
michal braun - very nice indeed. (profits go to the
fund for her now and future rehab!)

thank again.

bye

http://www.spreadshirt.com/shop.php?sid=97704


ALSO:

There's a photo album of all of Uma's hospital photos at: http://www.flickr.com/photos/theumafund/

And if you want to buy crafts made with love for Uma (all proceeds go to fund Uma's rehab):
http://www.etsy.com/shop.php?user_id=5098556

and www.teamuma.blogspot.com

Jason, prayers, Uma update

I've been behind on updating the blog...if you're on my email list, you've already gotten this update...

Dear friends,

Before I get to tonight's Uma update...I have a request for all of you beautiful, amazing people who have been praying for Uma and visualizing her full recovery...I just spoke to my very good friend Sian who informed me that one of her very good friends, Jason, is in the Neurological ICU at St. Vincent's Hospital in NYC right now, after having suffered severe head trauma. (He's in the same ICU that Uma was in.) On Saturday night, Jason was walking home from a gig (he's a DJ) when he was attacked by a gang of guys outside of the club where he works—a total random act of violence—and now he's in the same hospital that Uma was in for all of those weeks, going through pretty much the same thing she was going through: there's a lot of blood around his brain and the doctors have put him into an induced comatose state while they drain the blood. That's pretty much all we know right now. Jason's in a really scary place and his family has begun to gather in the waiting room at St. Vincent's, and they have begun their waiting, waiting, waiting. I know exactly what they're going through—Jason's in a really scary place—but Uma was in the same scary place, and she's doing so amazingly well, so I want his family to know that they have to have hope. (Don't let the doctors tell you otherwise. Because sometimes they say things along the lines of "we just don't know," and they might not offer you the hope that you're begging them to give you. But don't let that stop you from hoping because HOPE freaking WORKS.)

Jason's a really great guy—he's never met Uma, but when Uma was in New York, Jason read about what she was going through and he sent a donation to The Uma Fund to help bring her home. Uma has been in Jason's thoughts—even though he didn't know her—so I thought I'd send along this message about what Jason's going through so that some people out there in the world who don't know Jason might put him in their thoughts, too. That's my request: if you've got a list of people you pray for, please add Jason to the list. Say a prayer for him, visualize the blood draining from around his brain. Tonight, tomorrow, the next day. I have seen the power of prayer and visualization—and whatever you believe, whatever you want to call it—I know that all of the love and energy we've been putting out into the universe has manifested itself in Uma, it's helped her, it brought her out of the coma. I know it did. Let's help get Jason back too, help him wake up. It's completely messed up that random, violent things like this happen. It's completely messed up that we can have brain aneurysms and not even know it and they can just pop. A lot of things are completely messed up. BUT—and here's the thing to focus on—there are so many MORE things in the world that are NOT completely messed up, and we need to take note of all of the beautiful things and people around us every day. And we need to just freaking love, you know? And express our love to the fullest.

Speaking of love:

Uma is speaking more and more. I spent a lot of the day with her today and it had been several days since I'd seen her and in those few days she has improved dramatically. It's hard for John to see all of those improvements because he's with her so much (heck, it's hard for UMA to see all of those improvements because she's just living her new, weird hospital life), but she's making so much progress and it's worth celebrating. Uma is incredibly frustrated, but she is going to get through this tough period. The words are going to come back to her, she's going to relearn the things she no longer knows.

Now that Uma has started to talk again, it's become clearer that she doesn't understand as much as we thought she was understanding. She seems to forget things and repeatedly asks things like "why can't I talk?" and "what happened to me?" And John will explain to her what she's going through and assure her that she's going to be able to talk again. See, the thing is, she's not really speaking in complete sentences yet. She'll get out the beginning of a sentence and then lose the rest of the sentence. Yesterday, John and Eleanor worked with Uma on the phrase "I want," and today I heard her say "I want" several times, and she seems to understand what the phrase means, but she wasn't able to complete the sentence and say WHAT she wants. So we would guess, and ask her: "do you want x, or y, or z?" etc., until we stumbled upon what it was that she truly wanted. And that's when Uma gets frustrated—when she's trying to express something that should be easy to express and then she hits a wall and simply can't finish expressing what she freaking wants to express. I can only imagine how difficult it must be for her to not be able to find the words, but fortunately, even though Uma hits those walls of frustration often, she doesn't give up. She's still trying to find the words, she's even initiating moments of speech (occasionally) instead of just speaking when spoken to. These are all good signs.

At one point this afternoon, I asked Uma: "Are you frustrated?" And then she said the only complete, full sentence I heard her say today: "Yeah, because I'm not in my room." I interpreted this to mean that she's tired of the hospital and just wants to be home, in her own room. It's been over sixty days since she's been there. The good thing is, she's going to be there soon. I told her that, and then I asked her if she was afraid, and she said: "I can't...here..." and then her voice trailed off. I'm not sure what she was trying to express, but I hope and pray that her brain starts firing all of those synapses soon so that Uma can fully express everything she needs to express. She's on her way.

Today was a very busy day—several visitors, and lots of eating. (Uma's eating food now!) (I almost said she's eating "real" food now, but I hesitate to use the word "real" when describing the stuff she's eating—it's all purees for the time being: carrots, veggies, potatoes, etc.) (I tried the veggie puree and it was kinda gross.) (But still, it's food that Uma's putting into her mouth rather than food that's being directly pumped into her stomach, and that's a very good thing. (Progress!)

I have some more Uma stories to share, but I need to get to sleep. I apologize for any typos in the above email but I'm too tired to go back and read this over before sending it, so I'm just gonna hit "send." And if anything's incoherent, it's because I'm falling asleep. So, in a nutshell: please pray for Uma, please pray for Jason, and please tell everyone you love how much you freaking love them.

So much love to all of you,
erik