The Uma Fund

Video Update from Uma & ebay auction

2011-12-19T09:39:00.000-08:00

I have a video update from Uma, as well as a fundraising update below...if you don't know Uma's story, please read THIS INTRODUCTORY POST for all of her updates in chronological order...and Uma made a video to thank you for your support. Please watch:

We're still raising money to help pay for Uma's neuro-therapy bills. We've gotten some awesome Hollywood collectibles donated that we are auctioning off on eBay. Three of those items have already been posted, and more will be posted this week (so please keep checking back)!

The Uma Fund auctions can be found HERE. Please bid, and tell your friends -- email the link, post the link on facebook, tweet it, and retweet it! Thank you! Happy holidays!

12-16-11 update from John

2011-12-16T10:57:00.000-08:00

For those just visiting the blog for the first time, please read THIS INTRODUCTORY POST for Uma updates in chronological order, to get the full story about Uma's recovery process. For those who are old friends of the blog, here's John's latest update...

12-16-11 Update from John:

Everyone,

Acceptance. It's been a long time coming and may not be a permanent visitor....but I hope it is a frequent one. It's very welcome.

My Uncle Terry and I had a conversation about using the word "recovery" and I've decided to try some different words. As he said, "Language is everything."

Uma is reorganizing. So are the people who experienced hurricane Katrina. Once the storm stopped, their work started. It's still going on and will go on for many years.

It's the same thing for Uma. A storm of blood and loss swept through her brain and "washed" away two thirds of her left hemisphere. In both the most basic and poignant ways, her reorganization will continue until she dies.

The brain does form new neural pathways but this doesn't happen over-night....or over-year. It happens more quickly the more the brain is pushed to reorganize. And Uma has been pushed.......a lot......mostly by me. Fortunately for both of us she is learning to push herself now. And I am learning to let go.

In many ways the most important things that have happened for her here at Core Health pertain to her inner life. As she said, "I had to do it by....uh....for myself....not for John." I agree. By, for, because of herself? I'll take all three and more. She has learned to focus on herself, on what makes her "tick". She is learning to be honest with herself, to observe herself, and to accept what has happened to her.

As I alluded in my email in April, there were tragedies for Uma long before her brain injury. If these things required good care and time before her stroke, they'll require more specialized care afterward. Finding a good "shrink" (as she says) who has experience with traumatic brain injury is really not easy to do. It is a specialty that very, very few psychotherapists go into or encounter. VA hospitals have them....but Uma is not a soldier in the conventional sense. Core Health has one of these specialists and it has been the best thing for Uma throughout her stay here in Dripping Springs.

If a brain injured person can't think clearly, doesn't accept herself or feel that she's worth the effort then no amount or quality of hand, speech, and physical therapy is going to be of any use. This was a hard and a difficult lesson to learn - for both of us. But, using her markedly improved capacity for speech, Uma expresses these things in so many words. She is not holding her pain at arms length anymore. Humans don't usually do this until they are good and ready. She is both.

In terms of post-stroke reorganization, it's now thought that Uma might be approaching the half way point - just as she approaches the 5 year mark of her burst brain aneurysm. As her first neurosurgeon in NY said, "...what she has going for her is her youth."
She will be doing something in terms of therapy for many years. It will always cost a lot of money and we will always try to find both the money and the best thing for her.

Core Health was the best thing for her for most of 2011 (late April 'til now). When we drive home mid-January we'll stop and see my brother (Happy Birthday Wayne!) in Albuquerque and then see the Grand Canyon. I've been there a couple of times but she has never seen it. I can't wait to see her reaction.

There is nothing on earth that can contain the amount of love and support that has come from all of you for Uma. It's not something you can hold inside. It's too big for that and it has spread too far. It's all over the place now. I hope a great portion of it finds its way back to you this holiday season and beyond.

Thank you all for everything so far......

Love,

John

Two new updates: 9/1/11 & 9/11/11

2011-09-12T10:44:00.000-07:00

###

Uma update 9/1/11

Everyone,

Lots has happened.

Uma was moved from her original living facility to different building. The new building, Draper, has only 6 others living there in private rooms but the reason patients get moved here is due to their advanced level of independence.

At Draper everyone cooks their own meals in a fully stocked kitchen and has to cook dinner for all Draper clients one night per week. There are far fewer staff members per client and all the clients have living and cognitive skills that are, for lack of a better or more compassionate term, normal. I’ve always know Uma to be the hardest worker in any group including before her injury and I have great faith in her full recovery. But what this move does is help prove to her that she is gaining ground. Of all things this is of great importance. All Uma requires to recover from this stroke is a continued sense of hope. She already has all the drive, eagerness, and willingness to do and endure absolutely anything necessary. Hope is the fuel for this fire and the new living facility helps a lot with this.

On the wall next to her bed is a 3’ X 8’ piece of yellow construction paper and it’s full of photographs, cards, and words from and of her friends, family (all families – including extended), and herself at various stages of her life. Today, right before I said goodbye she pointed to the yellow paper and said, “Look at this…..every morning I wake up and see this.” On her desk are all the cards made and sent to her. So – now you know you are there with her as always.

They’d like her to get a job eventually in Texas before she returns to L.A. She’d probably work on the weekends. And they’d like to get her a driver’s license as well. These are two pretty important things to take home in the end….before she starts her brand new life in L.A.

I want to say again, THANK YOU! to ……how do I do this? Over 1000 people have give money to Uma’s recovery. To all the individuals, the strangers, the theater companies, friends, my family, Uma’s immediate family – dad, aunts, uncles, cousins – my aunts and uncles, my cousins, my friends….everyone. Every time I think of all your help and love I get a tight feeling in my chest that is not at all bad and my eyes water. I’ve seen the absolute best of humanity represented time and again by all of you. You’ve made it possible for us all to see Uma’s humanity again.

As always, with all my heart, thank you.

More to come in a week or so. If I come home from NY in October it means I’ve had success in a very nice project. If not, it means that success is merely postponed. Wish me luck!

John

###

9/11/11 update

Everyone,

I'm in New York the last few days getting the musical I co-wrote up to speed for performance. Today is 9/11. The city was very subdued, very quiet, trains were late or not running, and there were a number of police check points at various places.

When I first arrived here on Friday from another musical project in New Jersey I felt an odd sense of dread. It took a few blocks of travel to realize the source: almost five years ago many dreams were lost for Uma and I here. The memory of that day is always in my mind, always within reach. Her collapse in the hotel, the ambulance, the ER, the news. I can still see, hear, and even smell the hotel lobby and I can see myself hugging and shaking hands with all the musicians and dancers from the tour as they filed out to go to the next gig.

There's been at least a novel's worth of emails written since then, many thousands of dollars donated to Uma's recovery, and many more deeply moving displays of support for her and for me. The love shown to us by family, friends, and strangers is truly one of the best reasons to call ourselves human. But more remarkable than all of this is the effort Uma has expended to get her life back.

She never stops, never quits, and she always, without fail, only improves. Again - the deepest thanks for your support in helping to place her at Core Health in Austin. The efforts you and she have made are paying off.

Every month I take part in a conference call with all her therapists and case manager. This last time I heard the news I'd been waiting five years for: Uma can voluntarily move the fingers on her right hand. Not much, not like you and me, but she can do it. No hokus pokus, no special intensive "hand-only" therapy - just time and effort, skill and patience. She can extend her fingers and wrist a measurable amount. Of use? Not yet. Significant? You bet you life.

I always knew she'd get to this point but she didn't. This is concrete. It gives a foundation to all the hope and is the best "thank you" to all of you for your help.

Besides this, she is speaking so much better and jogs a little further each week. Her speech therapists are now concentrating a great deal on reading. And she can now feel her right hand. How do we know this? Because she complained of it hurting.

One thing is clear: she needs to remain at Core for a longer period of time. I will keep you all updated as often as I can. My work hours reach well past 14 each day but some news can't wait.

All my gratitude and love,

John

uma update 6/27/11

2011-06-27T13:48:00.000-07:00

[FYI: I'm posting some great photos of Uma working hard at CORE down at the bottom of this post. It's inspiring how hard she is working -- please scroll down and check out the photos!]

FROM JOHN:

Everyone,

I’m waiting at Austin Bergstrohm airport for my flight home. Instead of spending the weekend again in Austin we opted for Fredericksberg. It’s a German town in the middle of the Texas hill country. Damn hot! It makes a wall air conditioner the greatest luxury on earth.

When I first got to Core on Friday afternoon I saw Uma playing scrabble with a staff member in the rec room. She had blue and blonde hair – Uma, not the staff member. She said, “I wanted to shake things up!” In August we’re attending a wedding in Canada for her cousins. She says she’ll dye it back by then. I really don’t care. She’s the most beautiful woman in the world to me.

She’s doing very, very well. It’s slow, grueling work but she never shirks it. She enjoys the weekends when I’m there and actually gets excited to go back to “work” on Monday morning. The only thing she doesn’t like is the weekends when I’m not there – she has little work to do then. But she’s working her mind and body so hard that she actually needs the rest.

In some ways, just like the TV news, it’s so much more easy to report the horrible things, the tragic things. But it would be a bad thing on my part not to tell you how well she is doing. On top of her speaking, walking, and range of motion increase in her shoulder and hand, her spirits and her emotional state are stabilizing. You can imagine the attitude and perspective shift you’d undergo in her circumstances. Despair permeates. It’s a constant battle but she fights it and gets better at fighting it all the time.

Last week the Burglars of Hamm theater company held a fund-raiser for Uma at a local theater called Sacred Fools. It was hilarious, unique, smart, raucous. Just over $3000.00 was raised. That’s six full days of housing, board, and 30 hours of therapy for Uma. In reverse chronological order I have to publicly thank: Sacred Fools, Burglars of Hamm, Matt and Carol Almos, the Bootleg Theater, Tamar, Erik, Jessica, Alicia, Marie, Eleanor, (ok this is going to get ridiculous because so many people have been involved in these fund-raisers), Silvie, Phil, the bands, the crew…..wherever you found the love in your hearts and the time on your hands to help Uma, that truly is a divine place. May it grow and bless you, too.

I want to tell everyone how wonderful my family is. My cousins, aunts, uncles, nephews, brother, sister, in-laws – all contributed and continue to contribute to Uma’s health. Not small contributions. This is generosity personified. These are great, great people and I can’t wait to see them and thank them in person two weeks from now at our annual family reunion.

When Uma collapsed so violently in front of me four and a half years ago, the first chance I got to call someone, I called my parents. I didn’t call a friend or another doctor. When they finally took Uma back into surgery I called my mom and my dad. Why would I do that? Because out of all the people on earth, I knew they would speak to me with true, lasting love. I knew they would share my pain with me and lessen my burden. I knew they would be there for me. They have always been there for me from my first cry until now. I’m as full grown as any man that ever lived but I’m still their youngest child, their youngest son. And now that I’ve had to sacrifice on behalf of someone else, I have a small inkling of what they’ve gone through for me, what it has cost them, and what joys and healing it has brought to their lives.

To my parents, my family, my extended family, my theater family, all the strangers that have donated to Uma that are now my virtual family I want to tell you how full my heart is with thanks. She is beginning to live fully and we could not have done this without each of you.

All my love,

John

Thank you, Burglars of Hamm!

2011-06-23T08:56:00.000-07:00

Last night, Burglars of Hamm performed their show EASY TARGETS at the Sacred Fools Theatre, as a benefit for Uma, and I'm genuinely sore from laughing so hard. They raised over $3,000, which is incredible.

THANK YOU, BURGLARS OF HAMM --

you are beautiful, hilarious, awesome people.

I'm reposting the thank you message John posted on facebook after the show last night:

I must tell you how wonderful the theater community in Los Angeles has been to my little family - first the Evidence Room, then the Bootleg Theater, now Sacred Fools and the Burglars of Hamm - all helping Uma get her life back in the most divine and concrete ways. Thank you - a thousand, million times!

For those of you who are just coming to this blog for the first time, please read THIS INTRODUCTORY POST for Uma and John's story, as well as updates in chronological order. Every donation, no matter how big or small, helps us reach our goal of raising $80,000 to help pay for Uma's neurological rehabilitation expenses. And even if you cannot donate now, please continue to spread the word and repost links to The Uma Fund on facebook, twitter, etc. If you want to know other ways you might be able to help out, email me at dimsumday@gmail.com. Thanks and much love.

6/9/11 update from John

2011-06-09T22:58:00.000-07:00

For those who are new to the blog: PLEASE READ THIS POST for Uma and John's story. Also, Burglars of Hamm is doing their awesome show "Easy Targets" as a fundraiser for Uma on June 22 (at the Sacred Fools, who have generously donated their theater space). Very exciting! Tickets are available now -- get yours before they sell out!

p.s. If you haven't seen Uma & John's wedding video, check it out HERE. It's long but it really shows their love story and the beginning of Uma's road to recovery.

Dear friends...I'm forwarding an update from John about how Uma's doing at Core Health in Texas (spoiler alert -- she's doing really well), but first I just want to thank all of you for your incredible support...the donations, the well wishes, the prayers, the love, the hours that many of you put into the fundraiser at Bootleg last month -- it's incredible and moving how so many people (friends, family, and strangers) have come together in a really miraculous way. So thank you from the bottom of my heart. Huge, huge love to all of you. xo, erik

JOHN'S LATEST UPDATE:

hello everyone,

Uma is doing very well overall. I think the main thing she's experiencing on the positive side of things is a sense of hope that she can emerge from her stroke with the ability to have a life that she considers worth living. On the tough side of things she's experiencing a new and more accurate vision of how long it's going to take her to get what she wants.

I'm leaving to see her again tomorrow morning. Can't wait. I miss her so much.

She misses acting.

We talked yesterday about it - she said she wanted to "do Shakespeare"...just get a play and start to memorize lines. I said nothing but encouraging things to her at that time. Later on in the day I left a message for her on her cell phone, suggesting that she consider telling her own story instead of someone else's. She calls me every night after her dinner. This night, after I answered my cell with "Hey!", she burst in with, "Oh my god....that's it, man.....MY story....I never did that......not even with Bart DeLorenzo and the Evidence Room!" On my last visit I gave her a little digital recorder so she could record her thoughts. She's going to try to begin creating what I guess will be a one-woman show at some point in the future.

We talked further about other things......hoping for a brighter future despite the fact that there is so little work for me (thank god for piano tuning - although I keep thinking I'll be able to fully step away from that someday). We also talked about how long she'd be there at Core.

Today she called just as I was finishing a piano tuning. She said, "Ok....I'm just gonna say this one thing, ok?......even if we're penniless, we're still in love." (that is a verbatim quote). I think we can all agree that there are far worse people on earth than Uma.

Two days ago we had a conference call with all of her therapists and her case manager. It lasted about an hour and covered every aspect of her care. I spent most of the time speaking with her hand therapist - I needed to be convinced that she was getting somewhere with that part of it. I can tell just from phone conversations that she's improving in terms of her speech, and I know from her gym schedule that her leg, foot, balance, and stamina are improving.

Every therapist had the same reaction to Uma; they think she's pretty amazing, with nothing but potential for recovery. They are excited to work with her. They see improvement, enthusiasm. One of them told me how Uma basically dragged another patient (who rarely comes out of his room after therapy) out to the common area to play a game with her. Her hand therapist told me that on one day after therapy she, the therapist, actually started to dance around a bit because she was so excited about what Uma was accomplishing.

She's getting real help here and after over four years of trying to get her what she needs and only marginally succeeding, this is a real blessing. Thank you all for what you've done for her and for our family. I hope this email can reach out to where you are with my thanks...this is not a small thing....it's one of the biggest things, bigger than I could ever have imagined. Another way to say it is that it's beyond me - literally - what has happened for her because of all of you is outside of me, of my power, and beyond my own love for her and my hope for her future. I was losing hope in March but now I have it again and so does Uma.

The conference call ended with an estimate given for her discharge. They said that, at minimum, she'd need to stay there a total of six months. We, all of us, have raised enough money for just a bit over three months. The money is out there - we just need to bring it to Core Health.

A very talented theater ensemble is having a benefit for Uma on Wed. June 22nd here in L.A. Please do check out

https://sacredfools.secure.force.com/ticket#sections_a02G0000005Cel4IAC

These are enormously talented people who will make you laugh extraordinarily hard. The whole night's proceeds go for Uma's therapy. Two of the people who run this theater have been just simply nuts-generous for Uma already...and now they're pulling this night off. I'm glad I'll be in town to go see this. I could use a good laugh.

and also http://www.theumafund.blogspot.com/ (if for no other reason than to search for your name among those who've donated).

I've been very busy trying to hustle work and use that as an excuse not to update on Uma's life. No more. I will inform you all much more regularly from now on.

All my thanks and love,

John

6/2/11 update from John

2011-06-09T22:56:00.000-07:00

Sorry I'm posting this a week late! Life's been busy. John sent out an update tonight (6/9) that I'll post as well.

FROM JOHN:

Everyone,

The problem with increasing your self-awareness is that it could lead to becoming self-aware. It can be daunting in the best of circumstances.

I think I can make a good argument that Uma's circumstances are not ideal.

It has been truly miraculous how people have responded to her need for this rehabilitation. People from every facet and time in her life have given a precious resource to help her try to put her life back together.

I know that my writing, Erik's writing, everyone's texts, tweets, and facebook posts have inspired a large contingent of love and donations. But I don't think anyone would have given anything if they didn't believe Uma would do everything in her personal power to participate aggressively in this process. She is doing that.

She is digging in, showing up, trying, struggling.

For those of you with no trouble in your life, no bad habits, and nothing to improve, just skip the next two paragraphs.

Imagine yourself at a place that is not your home, away from family, and pretty much in one building 24/7. And in this place you are going to attend with deeply active participation and cooperation about 35 hours per week of work. The work you'll do will be to delve straight into every single area of your life that is troubling you. Imagine your worst traits, habits, secrets (even the ones you keep from yourself) all being exposed in front of many people and therapists for the sole purpose of improvement/healing. Imagine that you have no earthly idea how long this is going to go on and that for every 90 days of intense work you move an "inch" toward fulfilling your goals.

Now imagine that your "trouble" is that you can't open or control your right hand, can't turn your right wrist, jog, sleep very well at night, remember things said/taught to you yesterday, or read this sentence.....and imagine that you know that a lot of the brain you were born with is permanently gone, but that you remember precisely what it was like to have all that brain intact.

Uma is awakening to the bitter truth of her existence. She has been working incredibly hard for years but is now in a place where there is no "escape" from rehab. When she's done with her grueling day she doesn't come home to me. She realizes that after more than six weeks at Core she is improving but it is slow. After 6 weeks she is speaking somewhat better and her hand is looser, less spastic. But she still can't do so many things. The slow pace of her progress is the result of the severity of her injury and the physics of the human brain. Nothing about stroke recovery is exponential or immediate.

What is emerging, what is most difficult for her, is her renewed awareness of the passage of time. There were so many things lost for her after her brain injury and this was one of them. She had less awareness of the effects of time. This is changing and it's not all good right now. It's mixed. The "long haul" of this is weighing on her. She's always had an awareness of the amputation of her full function, but now she is facing it, her eyes are fully open to it. I don't believe you can emerge into something like this without significant growth and courage. She has both and is not giving up, slowing down, or caving in. She still can't wait to go to the next session.

Watching her go through this is very mixed for me. I so wish she could've been spared this struggle but know that, for her, there is either this struggle or a non-life.

There are two miracles: she lived through her burst brain aneurysm, and she has been supported by all of you. The rest is trench warfare.

I thank you again for helping to put her at Core. (I wish I could invent a word besides "thanks" that carried the weight of all my gratitude. Sometimes "thanks" seems so light). We have funding 'til about the middle of July. We will need it for much longer than that.

I'm leaving for New York for work this weekend but promise to find a way to post video and photos of my last visit with Uma. I think it will help show you that she is, in fact, going to make it.

Love,

John

5/23/11 update from John

2011-05-30T13:23:00.000-07:00

Sorry I didn't post this update earlier...it's John's update from the 23rd...

If you're just coming to this blog for the first time, PLEASE READ THIS POST for Uma and John's story. Also, Burglars of Hamm is doing their awesome show "Easy Targets" as a fundraiser for Uma on June 22 (at the Sacred Fools, who have generously donated their theater space) and I'll post more info about that night when I have it. Very exciting!

p.s. If you haven't seen Uma & John's wedding video, check it out HERE. It's long but it really shows their love story and the beginning of Uma's road to recovery.

From John:

Everyone,

It's been awhile since I wrote. I realized the other night that the reason I haven't is because I've been feeling so normal, and relieved. I haven't felt this since of well being in over four years.

Uma is doing very, very well at Core. I think this type of help for her was exactly what was missing.

What I saw two week ago there was her deep in the process of finding herself, of discovering who she is in the present time and how to deal with, accept, and improve upon what she has in her life now.

She always arrives for therapy on time or early, always has her notebook with her, can't wait for the work to begin. She sees this as the absolute recovery of her life and so do I.

Her walking, balance and endurance are better than earlier this year. Her hand therapy is very aggressive and implements some of the techniques that the people in Berkeley, use. Her sentence structure when speaking and all of her word-finding is improving very quickly. I completely expected this out of her.

What I didn't expect to see was her encouraging the other clients. As I said in a previous email, some of these people are tremendously banged up: motorcycle, car, military accident etc. and they are, for the most part, alone. Many of these people have family but they don't come to visit. A lot of these people have lost hope.

At the carnival I saw Uma get (ok - force) one of the girls in a wheelchair to do the egg walk with her. She rallied a staff member to push the girl through the walk. At one therapy session I heard her say to a discouraged client, "You mean you just want to watch TV for the rest of your life?" He replied, "Yeah....who cares?" Uma tilted her head to one side and said, "Awww come on....there's more to.....to......it than that! You have to DO stuff!"

A few days ago she said to me, "When I come home I want to do something meaningful...."

One of the most important things she's learning is to see how her minds operates. She can look into the future at specific events to come and is learning to prepare herself mentally, emotionally, and physically for them. This was missing for her. Again, it's one of those things most of us take for granted, one of those things she lost and is regaining.

There's no denying that this recovery is going to take a long time. The only thing exponential or immediate about Uma's stroke recovery was the fund-raising. You all need to see that for what is was: a miracle. You who donated actively took part in a miracle of altruism. It went very, very well.

We have enough to take her through about the middle of July. I'll know more for sure in about a week at the next staff conference for Uma, but I'm guessing she'll need to be there at least until the end of September. I"m still working on all aspects of getting the funds together and infinitely appreciate your generosity.

I don't think I could've imagined a recovery process more suited to her injury than where she is now. Thanks from my heart for putting her there.

Love,

John

5/14/11 update from John

2011-05-17T23:05:00.000-07:00

If you're just coming to this blog for the first time, PLEASE READ THIS POST for Uma and John's story. Also, one of the highlights from the benefit on May 1st was when this woman, Phoebe (who doesn't even know Uma, she's a friend of a friend) managed to raise $1,500 in two minutes. CHECK OUT THE VIDEO OF PHOEBE'S AWESOME FUNDRAISING HERE.

For those who have been following their story, here's an update from John. And thank you all for the continued support.

JOHN'S 5/14 UPDATE:

Everyone,

Uma is asleep beside me here at the Outpost Motel in Dripping Springs Texas. This is my third night with her.

When I arrived at Core Health on Thursday night I saw Uma in the break room playing Scrabble with one of the staff. She looked very, very different than the last time I'd seen her almost 5 weeks ago. Her face was bright and even, her movements were quicker and balanced, her eyes were clear.

In terms of recovery the first thing I noticed was that her walking, her gait were back to where they were before all the trouble in March. Other improvements are less apparent but I can see them.

Before we left Core on Thursday night Uma had to get her "meds" taken and packed up for our weekend off campus. The first of several patients (clients?) were introduced to me as I waited in the small hallway outside the meds room. What struck me the most, what I came away with that night as I drove us to the Outpost Motel was how broken these people's lives were. We're talking motorcycle and car wrecks, brain aneurysms and strokes. Everyone is different - some can't walk, some can't even push their own wheelchair, some speak and move well but can't open one eye, some have misshapen and severely scarred skulls. There are varying levels of self-consciousness emanating from each one. It began to dawn on me how lucky Uma was; she lived, she can walk, she appears to be what most of us would call "normal" (an over-rated moniker to me - maybe not so over-rated to some of the clients here). And she has not only me, but our families, and all of you. As I learned in the next couple of days, many of the clients here have been and remain alone.

I attended most of her therapy sessions on Friday. The first was a social skills group. The therapist worked with a strategy of role-playing; one client is a grocery clerk and has been instructed to be distracted while another client has to ask for (and get) an item. This is exactly what people like this need to practice. It involves so much simultaneous mental effort that you and I take completely for granted. It's the "lab" work associated with the "classroom" or one-on-one speech therapy.

The therapist had a steady, pleasant, unwaveringly positive approach and attitude. After my experience Thursday night I thought to myself, "How does she do this?" How does she deal with all the stuff in the room that I can't ignore? The loss, the pain, the rage. Is it just training? Or is it also an affinity for the job?

Other therapy that day (a relatively light one according to Uma) included vision exercises aided by a computer program (Uma ignores her right field of vision) and a cognitive skills group.

There have been 3 amazing things Uma has said (so far). On Friday as she was drifting off to sleep she said, "so.....the house doesn't matter..."
I said, "what do you mean? the house?"
"the.....uh......the house.....you and me.....what we stay in...it's us."
"Oh, you mean it doesn't matter where we are, we still have our 'home' when we're together?"
"Exactly right!"

On Saturday we woke up late, went to Thyme and Dough (the things we all wish we had more of, right?) for breakfast and then headed back to Core for the carnival. A moon walk, dunking tank, water balloon toss, and egg walk were all set up, among other things. Uma did all of them and won some over-sized sunglasses. I took video of it. Hopefully we can post this to Erik's blog soon.It was fun. I didn't expect it to be but the positivity of the staff was pretty infectious.

I spoke briefly with one of the VP's who had returned one of my rather strident phone calls made about two weeks ago regarding how "light" Uma's schedule appeared. (It was rather strident for me -- probably "rabid dog" for them!) It turned out to be a communication mishap (from my side as well). I apologized again, was reassured again, etc. I offered to sit in the dunk tank and let the staff takes turns but I was declined...:)

After the carnival we made a Target run and on the way Uma said, (this quote is verbatim) "Sometimes I get so emotional because you stayed.....after my aneurysm and a stroke."

As she was falling asleep tonight she said, "I can't believe the money...."
"You mean the donations from everyone?"
"Yeah, man, I'm just like.....blown!....I mean.......wow."
"You are loved Uma."
"I know."

Tomorrow we will hike around Pedernales Falls. Monday is a full day of therapy and I'll be able to stay with her until about 3pm. Can't wait.

It's "small town" here. There's quite a bit of "y'all, ma'am, sir" etc. The people here are friendly. I thought at first how rare that is where I live and then realized my mistake. The neighborliness just takes on a different form for us: I don't leave my dog with my next door neighbor while I'm gone....I drive him four miles to Alec and Jamie's. People don't pop in, say "hi" and help Uma with some task....they (all 5 or 6 hundred of them) donate thousands of dollars to help her recovery her life.

It's positive everyone. It's a good, good thing that she's here. You've all done a really great thing in sending her here. Thank you so much.

Love,

john

Halfway there!

2011-05-04T12:12:00.000-07:00

Thanks to the awesome fundraiser on Sunday, where we raised $6,506.01 (!!!!!), we're now halfway to our goal of raising $80,000!!! Please keep sharing Uma's story with your friends. If you're just coming to this blog for the first time, please READ THIS POST for more details on Uma's story. So much love and gratitude to the many friends, family, and lovely strangers who have helped so far. Uma is working hard in Texas! They went away to a camp last weekend, for some therapy out in the real world. Check out the incredible photo below of her climbing a wall!

TICKETS for Uma Benefit at Bootleg Theater on May 1st

2011-04-23T02:22:00.000-07:00

UPDATE: We raised over $6,000 for Uma's neurological rehabilitation at the benefit last night! (I will update the figure in the right-hand column when we have final figures on Wednesday.) Thank you to all of the incredible people who made it such an awesome & successful evening. I will post photos and a more detailed round-up of the evening later in the week. So much love to so many beautiful friends, family, and strangers.

On Sunday, May 1st, the Bootleg Theater is awesomely hosting a night of music to benefit Uma and help fund her rehabilitation. A quote from their website: "Uma and her husband, John Ballinger, are long time friends of Bootleg. They are tied deeply to the history of this arts space. Check out The Uma Fund site for Uma's amazing story and John's passion and devotion to her and their love. Help us raise money to help Uma continue her path of recovery!" (BOOTLEG)

Tickets are $15 at the door, or PURCHASE TICKETS BY CLICKING THE "BUY NOW" BUTTON AT THE BOTTOM OF THIS POST. (Note: when you purchase tickets, please include a note with the name you'd like tickets to be held under at the box office. If you have any difficulty purchasing tickets, email Erik at dimsumday@gmail.com and he'll help you!)

Doors open at 7pm, music starts at 7:30. Food, drinks, and a raffle all to help raise money for Uma! (RAFFLE ITEMS LISTED AT BOTTOM OF POST!)

Artists scheduled to appear:
Bruno Coon

Kristen Toedtman
The Leo Trio
Laura Martin
Missincinatti
Leslie Stevens
Christine Tavares & Jess Basta

See you on May 1st!

(NOTE: This paypal is just for buying tickets to the Bootleg benefit. Regular donations to benefit Uma can still be made through John's paypal account. Info below! Thanks.)

# of tickets

name for tickets at box office

RAFFLE ITEMS INCLUDE:

-Pairs of tickets for performances at theaters throughout Los Angeles! REDCAT, Bootleg Theater, Geffen Playhouse, Pasadena Playhouse, Theatre @ Boston Court, ComedySportz Los Angeles

-Various services including private pilates and yoga instruction, a personalized makeover, as well as three hours worth of website business consultation

-Specialty items: Painting inspired by Uma’s story, entitled Hope, by award-winning artist Travis Catlett; Lucinda Wiliiams’ latest release plus autographed vinyl record; A Dean bag from Dean Accessories valued at $250; A unique hand-crafted backpack made of found materials from thingsbuilt

-Art items: Charcoal print of Laurel & Hardy signed by the artist, Gary Saderup (462/1000); Signed poster of Theater on the Square in Indianapolis (10/100); Framed Picasso poster from the Pace Gallery’s exhibition in 1981; a 20" x 24" photograph (artist's choice), matted and sealed, from professional photographer Matt Gorrek

Thank you to all of the donors! I'm posting a more detailed, itemized list of raffle prizes in the comments, check it out.

Raising money for Neurological Rehab

2011-04-15T00:10:00.000-07:00

(NOTE: This is the original post that tells Uma & John's story. I've updated it to include John's latest updates in chronological order, below this first update -- to make it easy for people who are just reading this for the first time to get caught up. Much love and thanks, erik.)

Dear friends and family,

It's been a really long time since I've sent out an Uma update. But this is an important one. She's about to start an intense neurological rehabilitation program (detailed in an email from her husband John, which I'm posting below) and I'm hoping to help raise funds to help pay for the program. Many of you know Uma well, but for those of you who are new friends and don't know Uma's story of survival, here's a quick Reader's Digest version:

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

Thanks to the incredible generosity of friends and family and strangers, we were able to rent an air ambulance to fly Uma out to an in-patient therapy center in California, where she started learning how to walk and talk again, with the help of John, who’s always been by her side. They got married on July 14, 2008, in a beautiful ceremony in Eagle Rock, California.

For the last four years, Uma's full time job has been therapy. To get better. And the truth is: she has...to a degree. I've watched her improve in slow increments, but there are still huge neurological deficits that prevent her from being able to read, and write, and most importantly and basically, to express herself. The Uma who I know and love is there, but sometimes it feels like important parts of her are trapped inside her brain, if that makes any sense at all.

I believe that this program could be a miraculous thing for her. She's gonna need help to make it happen. Back in 2007, when she needed an air ambulance to fly back to California, we miraculously raised over $20,000 in less than a week. This new neurological program will cost about $80,000 (for six months of intense therapy) and even though that sounds like an insane amount of money, I believe we can raise it. Since yesterday, John's already managed to raise $1,000, so we're already 1/80th of the way there.

Any help you might be able to offer would be incredibly appreciated. If we can find 4,000 people who'd be willing to donate 20 bucks, then boom: we've made our goal. (And I know that sounds crazy, but I also know that back in 2007, the doctors told us Uma had only a 20 percent chance of survival, so there's nothing crazy about hope. Anything and everything is truly possible.)

Dream big, live big, HOPE big.

If you can donate more than 20 bucks, that's awesome and amazing and much appreciated. If 20 bucks is way too much for you right now (and believe me, I know the feeling), even a five dollar donation would help. Thank you in advance. If you can't donate right now, peace and love and blessings to you still. Please forward this message to friends, repost it, retweet it, facebook it, print it out and tape it to the fridge in your office, any way you feel comfortable spreading the word would be awesome.

And please read John's email below -- it's long, but gives a much clearer picture of Uma's current condition and how much this program could help. There are links to donate through paypal down at the very bottom of this email.

So much love to all of you,

Erik

Here are some photos and videos of Uma that show some of her recovery process, and the love story that has continued to unfold throughout her journey, between her and John:

MESSAGE FROM JOHN:

Everyone,

This is going to be a long email and, as I said late last night, the most important one I've ever written to you about Uma. Please take the time to read it. I'm asking you to do this, please.

First - there is not one single person in her family that is currently in contact with her (if even by email) that is in any way at fault for where she is currently. Her current family, especially her father and aunt Dharshi, have been one of the main reasons I am still sane and involved in her life.

Let me start by saying that Uma is now in great danger regarding her meaningful survival and in potential danger regarding her survival in general. How this could be given the fact that she has only improved in her stroke recovery is explained below.

She had, in fact, only improved in terms of her basic stroke recovery. She speaks, walks, and moves her right arm better now than she has as any time in the past (current medical set-backs aside). For those of us who take for granted our ability to speak, read, write, walk, drive, run, understand, have some emotional control, open a door with either hand, fasten a button, go to work, pursue happiness, and think clearly this is enough to have a good life. For any of you who can imagine for a moment what it would be like to lose even one of the above listed items, you can see where Uma's life (having lost all of the above) would be unmanageable.

I have made mistakes in trying to guide her care. This haunts me daily especially now as I see her in severe crisis. I have never been married to nor had to care for a victim of stroke but I'm still disappointed in myself for not seeing earlier what I see now. Can't go back.

I did what I was told to do from therapists, doctors, the internet. I drove her to countless hours of physical, occupational, speech, and behavioral therapy. She ALWAYS went along, ALWAYS tried her hardest, ALWAYS looked forward to more therapy, more help. But the help she was getting did not take into account one crucial piece of the recovery puzzle: her traumatic brain injury.

The following quotes are from her neuro-psychological evaluation of July '10....slowed information processing
reduced memory
suffering from non-diagnosed depression/ptsd secondary to multiple early life experiences and......abuse. (please re-read the second sentence of this email re: her current family)
nervousness and anxiety related to loss of function
Insight, judgment and abstract thinking were poor
Ms. Nithipalan performed below expectation on most neuropsychological measures for an individual with her education, employment, and achievement background
Intelligence: borderline
Attention and concentration: impaired
Speed of information processing: unable to adequately assess
language: impaired
visuospatial/constructional: borderline
memory- verbal: impaired
executive functions: impaired
emotional functioning & quality of life: depression, anxiety, tension
problems with reasoning, fluid problem solving, attention & concentration, language, memory.
...will have significant difficulty with verbal communication as well as understanding what is communicated to her
...will have difficulty recalling verbal information
...patient will be severely challenged to retain information and recall it later.
Emotionally, Ms. Nithipalan reports multiple early life traumatic experiences....
... all findings are congruent with cognitive disorder.

...you get the picture? No matter what therapy she does to improve her life, it will not sink into her brain permanently without brain-injury specific expertise.

This is important because no one she has encountered so far has had any real experience in re-building her brain on a holistic level. Yes, she can recognize letters better (but still cannot functionally read/write), and can move her arm better and can walk. But she does not know herself or her limitations....she knows who she used to be. And she knows that she is not that person now. But her cognitive deficits prevent her from taking action independently to improve her life or even her mood or attitude.

It's hard to imagine isn't it?

At one of her speech therapist's office I participated in a family assignment: tie my right hand to my pants and attempt to complete certain basic tasks....and the tasks were written on paper the way a person suffering from aphasia (alexia, agraphia) might see them....i.e. mixed up letters, words where the ink fades midway through, directions in German, Mandarin, huge blank spots etc. After about 20 minutes of that it became much easier to imagine what Uma's constant level of frustration might be. I wanted to read the directions and complete the tasks, but the words on the paper disappeared or switched language or were gone. And then when I could divine what the task was I had to do it with my left/weak hand. Exhausting.

I can't tell you how many times I've heard a doctor or therapist say something to her like, "Make sure you follow all the directions on this sheet of paper" or "You're just going to have to come up with your own strategies to deal with this" or "hang in there, Uma!"

Gabrielle Giffords, the Arizona law-maker who was shot has a traumatic brain injury. Because she is in the government, she will get all of the best TBI based therapy for as long as it takes for her to function adequately again. But there is no civilian medical insurance plan available that duplicates this level of care. They all stop payments at some point long before the patient is anywhere close to being where they were before the injury. The insurance companies will cover for medical expenses, post-cancer chemo and even reconstructive surgery so a patient feels more normal. But there is nothing for the restoration of meaningful life after brain injury.

There is, according to my research, three places in the United States that can help Uma. These facilities deal only with people who've had traumatic brain injury (stroke, car accident, etc). They treat the patient individually and have great specific experience finding ways to reach each one. With TBI there are no real generalities. The brain is amazing and at once amazingly robust and fragile. Each brain is different.

I have found a place in Texas that can give Uma a life, that can restore her to herself and teach her to think clearly again.http://www.corehealth.com/ is the home page.http://www.corehealth.com/psychology.php is the page most apt for Uma andhttp://www.corehealth.com/video.php is the page with the video on it. (the latter part of the video does not apply to Uma) Please look at these links.

Uma's Aunt Dharshi and I have thoroughly checked this place out and are completely satisfied that this is the answer for her.

I am convinced that it is the last chance she has to recover. And I'm not just talking about her stroke. Because some of the things affecting Uma are deeply personal and traumatic to her, I can't go into more detail. Suffice to say that, prior to her stroke, some of the worst things that can happen to a female at any age happened to her. Her reduced cognitive functioning has caused her to seek relief in the most dangerous ways for her. Her current therapist said, "Uma, this........could lead to your death."

Uma is in trouble. More trouble than four years ago. Core Health can help.

Why them? Why Texas? Because the equivalent in California costs $2000.00 per day. (What is up with that?!)

Core Health is about $500.00 per day. Sounds like a lot of money.

Let's break that down:

private room .......$125.00 per day?
three meals .......$40.00 per day, maybe?
5 to 7 hours of cognitive, substance abuse, ptsd, speech, physical, occupational, vocational, individual and group therapy 5 days per week by experts in the field of TBI? ...I'd give everything I have now and everything I'll ever have to get that for her. (and I probably will) Not to mention sleep studies, psychiatric care etc etc.

It is estimated that she'll be there for 6 months. (She can fly home on some weekends and I'm already scouting road trip, amtrak, and planes to visit as much as possible).

The math? Yeah, I know. It seems impossible. How can we raise that kind of money?
It's about $15,000.00 per month X maybe 6 months. It's a lot of money. But it is possible to raise.

In March of '07 Erik Patterson had a blog and managed to raise over $20,000 for Uma's air ambulance back home. This was done in just 8 days. (Power of the pen!) But I think it was done because people responded so keenly to Uma's predicament and to the deep love and concern those in her life displayed. (apparently people love real love)

Things are more crucial now. She needs this kind of help to have a life. I can't put it more simply than that. She needs this and we're going to get it for her. The reward will be her restored life. It's worth it.

I have estimated that over $80,000.00 has been spent on her recovery so far. I think her life is worth that. I think her life is worth raising the money for Texas.

In the last fund raiser people gave generously. Strangers sent in, for example, $6.42 to my paypal account. Maybe they were rounding up a phone bill.

She needs this again.

I gave up my pride after the first sentence of this email. If you've read this far then you know that I am actually begging for help.

Paypal is an easy way to donate money to her. (NOTE FROM ERIK: paypal links below)

It's basically a way to send money from your credit card, or bank account, atm. It's truly safe and it's truly easy to do.

On paypal you'll access my email john.ballinger@sbcglobal.net

We need to get her to Texas as soon as possible. It's as simple as that and I'm sorry I can't go into more detail as to why things are as desperate as they are. It's my hope that, when she leaves there and her life is restored, I'll be able to finish my book (along with her help) and you can all read about it in great detail and know that you were instrumental in bringing her back.

Please help us.

Love,
John

AND NOW, THIS IS ERIK AGAIN:

We are collecting donations via PayPal. If you don't already have a PayPal account, please follow the simple instructions (listed below) to open an account. It literally takes 1 minute. Then click on the SEND MONEY tab and send your donation via John's email (john.ballinger@sbcglobal.net).

NOTE: If you prefer to donate via check or some way other than paypal, email me at dimsumday@gmail.com and I can give you an address to mail a check, etc.

HOW TO OPEN A PAYPAL ACCOUNT:

(My grandmother asked for "explicit paypal instructions," so I'm going to make this as easy as possible.)

Log on to http://www.paypal.com/
Click on the "sign up" button at the top of the page
Select "personal account," select which country you live in, then click on "continue"
Enter your personal information, choose a password, then click on the "I agree, create my account" button at the bottom of the page
You will receive an email from paypal. Open the email, click on the link, enter your password, and voila, you have a paypal account. (See Grandma? Very easy.)

THEN, TO MAKE A DONATION:

Click on the "send money" button
Enter John's email in the first box ( john.ballinger@sbcglobal.net), the amount of your donation in the second box, in the "category of purchase" box you should select "cash advance," and then fill out the other boxes as you please. Then hit the "continue" button.
Enter your credit card info and billing address, then hit the "add card" button.
Then you should be brought to a page that has your "payment details." If everything looks good, click on the "send money" button, and you're set. Paypal will then send you an email to confirm that the payment went through.

And again, thank you, thank you, thank you.

Update from John, 4/18/11:

Everyone,

Something miraculous has happened since I sent my long email. We’ve managed to raise enough money to cover the cost of the first month of Uma’s therapy in Texas.

We had a conference call with them this morning. I was listening to them as much as they were listening to Uma. The first thing they wanted to know was whether Uma could tell the difference between “regular” or tension headache and something much worse – aneurysm headache or seizure headache. Good for them – this is not a regular hospital and they’d have to take her somewhere else for medical help.

The call was a success in that we all realized that she is a great candidate for their program. They felt that they could really help her. At one point they were asking her about whether she would feel motivated to attend all the therapy sessions. Before they finished the question Uma blurted out, “I LOVE therapy!” The doctor said, “I don’t think we’ve ever heard that before!”

The rest of the day involved getting a large check (from the Evidence Room!) cashed and getting other cashier’s checks (thanks mom and dad) deposited at my credit union to obtain the ‘big’ cashiers check for the clinic. The teller asked me what the money was for. By the time I got done explaining I learned that her father also had a stroke and that she was going to donate to our fund.

News about that fund (and your name if you’ve donated) can be found here –

http://theumafund.blogspot.com/

Again, just like last time around, I’m getting donations from people who’ve never met Uma. Many donations are under $20. Some are from people I know to be pretty broke themselves. A few have come from people with serious or even fatal disease.

My own family (and extended Angel family) has been generous beyond any expectation.

We are both excited and afraid. I will miss her terribly. Even the recent hospital bed, surrounded by clatter and nursing in the halls, sirens at the E.R., and ‘vitals’ every 6 hours, I felt at home holding her. As I said at our wedding, she is my home, I’m her shelter. It’s still true, it’s more true.

We have a pain-management appointment tomorrow at Cedars at 8am, drop off the score to the guitarist subbing for me at my job, drop off the dog, fly to Austin at 3, check in to the clinic Wed. at 10 am, then I fly home Wed. evening at 5pm.

We are bending a new, vitally necessary corner in the road and we could not have done it without all of your prayers, thoughts, and your concrete, rock bottom financial support. Thank all of you forever.

Love,

John

XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

LATEST UPDATE 4/22/11:

Dear friends...I'm writing to let you know that Uma is in Texas, where she began her neurological rehabilitation on Wednesday. I'm forwarding John's email update with details about her first day there below. But the main reason I'm sending this email is to say thank you for making this possible. Thanks to the over 400 people (and counting!!!) who have donated, we've raised enough money to pay for the first two months at Core Health! Amazing & inspiring. Thank you.

We're still trying to raise enough to cover 6 months worth at Core, so please continue to spread the word, forward emails, post updates on Facebook, Re-Tweet Uma updates on Twitter, and send good vibes and love to Uma, who's off in Texas doing this alone, and being incredibly strong and brave. We're also having a musical benefit on Sunday May 1st at the Bootleg Theater that will be a fun party and I'll send out more specific info about that in the next day or two -- but save the date!

Huge, mountainous chunks of love to all of you,

Erik

MESSAGE FROM JOHN:

Everyone,

On Tuesday we flew together to Austin, TX. Wednesday morning found us at Core Health speaking with all of the "intake" people there; coordinator, money guy, psychologist, physical therapist, staff supervisor, and even the cooks. I was there at the facility for about 2 and half hours before needing to get back to the airport. Uma stayed.

All my questions and concerns (and I voiced all of them to everyone) were answered without any hesitation at all. There was absolutely nothing in Uma's history or in her particular set of needs that surprised them at all. Even after I explained to the coordinator and money person that hundreds of people are going to be watching their every move (in so many words) they didn't blink. I came away from those meetings with the feeling that Uma had found the right place.

She has a sizeable private room with a large half bath. The shower is down the hall. All are located in the building where Uma will do the bulk of her work. This is not a huge, sprawling, shiny new hospital. It looks and feels like a place where people work hard.

There are a lot of staff per patient here and one of the main differences with Core is the communication between therapists. They all know what the others are doing, what the particular safety and therapeutic concerns are for each patient. This coordination is very key to recovery.

After watching her initial evaluations (and showing everyone her video footage from Jan. and Feb.) I felt very secure in leaving her in their care. She felt the same. The most difficult part for me was actually walking out of that building and driving to the airport. I feel like this is going to be a long journey for her but the most important of her life. I feel that if she does well here (and she will) she will emerge a more confident, much deeper functioning, and happier person.

I called her when my plane landed at LAX. She said, "someone comes by every.....all the....every one, two hours....." which I eventually realized meant that the staff check on every patient throughout the night. (there are audio and video monitors in the building, outside doors have alarms) I told her how proud I am of her for being so hard working and so brave to continue this struggle. "Do you feel safe there, Uma?"

"I think so....."

She called the next morning and said she'd slept like a baby.

I didn't hear from her again until after 7pm her time Thursday. I rang her cell phone. The first thing I heard was, "Oh my god, man........the work!.....wow!" She went on to explain how busy she was but also how different things were there. She said, "...the speech!....(speech therapy)....it was so great!...it was like I was a kid again learning......I was like 'oh so that's it.'" And about the gym she said, "A lot of people were doing one, two things but I did, like, five things.......my a** is gonna hurt tomorrow!"

So - having been accused of writing too long of updates I'll close by saying that she feels like this place is really going to work for her on every level. She loves the psychologist and says, "Right now I'm scared......I'm not interacting....but it's just like Oxy (her college)....I'm going to make friends but not right now. I need to......to....to....."
"What? Get used to the place?"
"ExACTly!"

In the first week of fund raising I received dozens and hundreds of emails with money attached. And while that has dwindled down to just a few per day now, they include notes from strangers, "We don't know you and Uma but are very moved by your story. We hope this small donation helps in some way." And they gave $20, or $40. Even the California Highway Patrol donated money (Thanks Jill!). Besides my own family, without whose help she would not be there, some of the most generous donations came from people who have brain injury in their own families. These people identify on a deeply personal level with Uma's loss and the difficulty it has brought to her life and the life of our family here in Los Angeles. It's been truly amazing and, frankly, hard to believe how quickly and wonderfully people have responded.

Last night before I played my theater gig one of the actors (who donated) stopped me and said, "So....I hear Uma's in Texas?" I said, "Yes, she is. It's a great place for her....and you bought her some time there. Thank you." That's my message to all of you; you've bought her time to recover her life.

As I left that gig I realized this is the first time I've played the show and am not driving back to a hospital.

So far, so good. We have raised enough money for almost two months but it is most likely that she'll need far more than that.

For me there is no "more truthful" or "less truthful". There's just the truth.

The truth is that Uma needs this in order to restore her life. Thank you for giving of yourself to help her. Please pass this email along to anyone you like. More later.

love,

John

For past Uma updates, you can visit the Uma archives from my old blog here:

http://myyearofnewthings.blogspot.com/search/label/Uma

####

5/4/2011 UPDATE:

Thanks to the awesome fundraiser on Sunday, where we raised $6,506.01 (!!!!!), we're now halfway to our goal of raising $80,000!!! Please keep sharing Uma's story with your friends. If you're just coming to this blog for the first time, please READ THIS POST for more details on Uma's story. So much love and gratitude to the many friends, family, and lovely strangers who have helped so far. Uma is working hard in Texas! They went away to a camp last weekend, for some therapy out in the real world. Check out the incredible photo below of her climbing a wall!

####

5/14/2011 UPDATE from Erik:

One of the highlights from the benefit on May 1st was when this woman, Phoebe (who doesn't even know Uma, she's a friend of a friend) managed to raise $1,500 in two minutes. CHECK OUT THE VIDEO OF PHOEBE'S AWESOME FUNDRAISING HERE.

For those who have been following their story, here's an update from John. And thank you all for the continued support.

JOHN'S 5/14 UPDATE:

Everyone,

Uma is asleep beside me here at the Outpost Motel in Dripping Springs Texas. This is my third night with her.

When I arrived at Core Health on Thursday night I saw Uma in the break room playing Scrabble with one of the staff. She looked very, very different than the last time I'd seen her almost 5 weeks ago. Her face was bright and even, her movements were quicker and balanced, her eyes were clear.

In terms of recovery the first thing I noticed was that her walking, her gait were back to where they were before all the trouble in March. Other improvements are less apparent but I can see them.

Before we left Core on Thursday night Uma had to get her "meds" taken and packed up for our weekend off campus. The first of several patients (clients?) were introduced to me as I waited in the small hallway outside the meds room. What struck me the most, what I came away with that night as I drove us to the Outpost Motel was how broken these people's lives were. We're talking motorcycle and car wrecks, brain aneurysms and strokes. Everyone is different - some can't walk, some can't even push their own wheelchair, some speak and move well but can't open one eye, some have misshapen and severely scarred skulls. There are varying levels of self-consciousness emanating from each one. It began to dawn on me how lucky Uma was; she lived, she can walk, she appears to be what most of us would call "normal" (an over-rated moniker to me - maybe not so over-rated to some of the clients here). And she has not only me, but our families, and all of you. As I learned in the next couple of days, many of the clients here have been and remain alone.

I attended most of her therapy sessions on Friday. The first was a social skills group. The therapist worked with a strategy of role-playing; one client is a grocery clerk and has been instructed to be distracted while another client has to ask for (and get) an item. This is exactly what people like this need to practice. It involves so much simultaneous mental effort that you and I take completely for granted. It's the "lab" work associated with the "classroom" or one-on-one speech therapy.

The therapist had a steady, pleasant, unwaveringly positive approach and attitude. After my experience Thursday night I thought to myself, "How does she do this?" How does she deal with all the stuff in the room that I can't ignore? The loss, the pain, the rage. Is it just training? Or is it also an affinity for the job?

Other therapy that day (a relatively light one according to Uma) included vision exercises aided by a computer program (Uma ignores her right field of vision) and a cognitive skills group.

There have been 3 amazing things Uma has said (so far). On Friday as she was drifting off to sleep she said, "so.....the house doesn't matter..."
I said, "what do you mean? the house?"
"the.....uh......the house.....you and me.....what we stay in...it's us."
"Oh, you mean it doesn't matter where we are, we still have our 'home' when we're together?"
"Exactly right!"

On Saturday we woke up late, went to Thyme and Dough (the things we all wish we had more of, right?) for breakfast and then headed back to Core for the carnival. A moon walk, dunking tank, water balloon toss, and egg walk were all set up, among other things. Uma did all of them and won some over-sized sunglasses. I took video of it. Hopefully we can post this to Erik's blog soon.It was fun. I didn't expect it to be but the positivity of the staff was pretty infectious.

I spoke briefly with one of the VP's who had returned one of my rather strident phone calls made about two weeks ago regarding how "light" Uma's schedule appeared. (It was rather strident for me -- probably "rabid dog" for them!) It turned out to be a communication mishap (from my side as well). I apologized again, was reassured again, etc. I offered to sit in the dunk tank and let the staff takes turns but I was declined...:)

After the carnival we made a Target run and on the way Uma said, (this quote is verbatim) "Sometimes I get so emotional because you stayed.....after my aneurysm and a stroke."

As she was falling asleep tonight she said, "I can't believe the money...."
"You mean the donations from everyone?"
"Yeah, man, I'm just like.....blown!....I mean.......wow."
"You are loved Uma."
"I know."

Tomorrow we will hike around Pedernales Falls. Monday is a full day of therapy and I'll be able to stay with her until about 3pm. Can't wait.

It's "small town" here. There's quite a bit of "y'all, ma'am, sir" etc. The people here are friendly. I thought at first how rare that is where I live and then realized my mistake. The neighborliness just takes on a different form for us: I don't leave my dog with my next door neighbor while I'm gone....I drive him four miles to Alec and Jamie's. People don't pop in, say "hi" and help Uma with some task....they (all 5 or 6 hundred of them) donate thousands of dollars to help her recovery her life.

It's positive everyone. It's a good, good thing that she's here. You've all done a really great thing in sending her here. Thank you so much.

Love,

john

####

5/23/11 UPDATE

From John:

Everyone,

It's been awhile since I wrote. I realized the other night that the reason I haven't is because I've been feeling so normal, and relieved. I haven't felt this since of well being in over four years.

Uma is doing very, very well at Core. I think this type of help for her was exactly what was missing.

What I saw two week ago there was her deep in the process of finding herself, of discovering who she is in the present time and how to deal with, accept, and improve upon what she has in her life now.

She always arrives for therapy on time or early, always has her notebook with her, can't wait for the work to begin. She sees this as the absolute recovery of her life and so do I.

Her walking, balance and endurance are better than earlier this year. Her hand therapy is very aggressive and implements some of the techniques that the people in Berkeley, use. Her sentence structure when speaking and all of her word-finding is improving very quickly. I completely expected this out of her.

What I didn't expect to see was her encouraging the other clients. As I said in a previous email, some of these people are tremendously banged up: motorcycle, car, military accident etc. and they are, for the most part, alone. Many of these people have family but they don't come to visit. A lot of these people have lost hope.

At the carnival I saw Uma get (ok - force) one of the girls in a wheelchair to do the egg walk with her. She rallied a staff member to push the girl through the walk. At one therapy session I heard her say to a discouraged client, "You mean you just want to watch TV for the rest of your life?" He replied, "Yeah....who cares?" Uma tilted her head to one side and said, "Awww come on....there's more to.....to......it than that! You have to DO stuff!"

A few days ago she said to me, "When I come home I want to do something meaningful...."

One of the most important things she's learning is to see how her minds operates. She can look into the future at specific events to come and is learning to prepare herself mentally, emotionally, and physically for them. This was missing for her. Again, it's one of those things most of us take for granted, one of those things she lost and is regaining.

There's no denying that this recovery is going to take a long time. The only thing exponential or immediate about Uma's stroke recovery was the fund-raising. You all need to see that for what is was: a miracle. You who donated actively took part in a miracle of altruism. It went very, very well.

We have enough to take her through about the middle of July. I'll know more for sure in about a week at the next staff conference for Uma, but I'm guessing she'll need to be there at least until the end of September. I"m still working on all aspects of getting the funds together and infinitely appreciate your generosity.

I don't think I could've imagined a recovery process more suited to her injury than where she is now. Thanks from my heart for putting her there.

Love,

John

####

6/2/11 UPDATE:

FROM JOHN:

Everyone,

The problem with increasing your self-awareness is that it could lead to becoming self-aware. It can be daunting in the best of circumstances.

I think I can make a good argument that Uma's circumstances are not ideal.

It has been truly miraculous how people have responded to her need for this rehabilitation. People from every facet and time in her life have given a precious resource to help her try to put her life back together.

I know that my writing, Erik's writing, everyone's texts, tweets, and facebook posts have inspired a large contingent of love and donations. But I don't think anyone would have given anything if they didn't believe Uma would do everything in her personal power to participate aggressively in this process. She is doing that.

She is digging in, showing up, trying, struggling.

For those of you with no trouble in your life, no bad habits, and nothing to improve, just skip the next two paragraphs.

Imagine yourself at a place that is not your home, away from family, and pretty much in one building 24/7. And in this place you are going to attend with deeply active participation and cooperation about 35 hours per week of work. The work you'll do will be to delve straight into every single area of your life that is troubling you. Imagine your worst traits, habits, secrets (even the ones you keep from yourself) all being exposed in front of many people and therapists for the sole purpose of improvement/healing. Imagine that you have no earthly idea how long this is going to go on and that for every 90 days of intense work you move an "inch" toward fulfilling your goals.

Now imagine that your "trouble" is that you can't open or control your right hand, can't turn your right wrist, jog, sleep very well at night, remember things said/taught to you yesterday, or read this sentence.....and imagine that you know that a lot of the brain you were born with is permanently gone, but that you remember precisely what it was like to have all that brain intact.

Uma is awakening to the bitter truth of her existence. She has been working incredibly hard for years but is now in a place where there is no "escape" from rehab. When she's done with her grueling day she doesn't come home to me. She realizes that after more than six weeks at Core she is improving but it is slow. After 6 weeks she is speaking somewhat better and her hand is looser, less spastic. But she still can't do so many things. The slow pace of her progress is the result of the severity of her injury and the physics of the human brain. Nothing about stroke recovery is exponential or immediate.

What is emerging, what is most difficult for her, is her renewed awareness of the passage of time. There were so many things lost for her after her brain injury and this was one of them. She had less awareness of the effects of time. This is changing and it's not all good right now. It's mixed. The "long haul" of this is weighing on her. She's always had an awareness of the amputation of her full function, but now she is facing it, her eyes are fully open to it. I don't believe you can emerge into something like this without significant growth and courage. She has both and is not giving up, slowing down, or caving in. She still can't wait to go to the next session.

Watching her go through this is very mixed for me. I so wish she could've been spared this struggle but know that, for her, there is either this struggle or a non-life.

There are two miracles: she lived through her burst brain aneurysm, and she has been supported by all of you. The rest is trench warfare.

I thank you again for helping to put her at Core. (I wish I could invent a word besides "thanks" that carried the weight of all my gratitude. Sometimes "thanks" seems so light). We have funding 'til about the middle of July. We will need it for much longer than that.

I'm leaving for New York for work this weekend but promise to find a way to post video and photos of my last visit with Uma. I think it will help show you that she is, in fact, going to make it.

Love,

John

####

6/9/11 UPDATE

Dear friends...I'm forwarding an update from John about how Uma's doing at Core Health in Texas (spoiler alert -- she's doing really well), but first I just want to thank all of you for your incredible support...the donations, the well wishes, the prayers, the love, the hours that many of you put into the fundraiser at Bootleg last month -- it's incredible and moving how so many people (friends, family, and strangers) have come together in a really miraculous way. So thank you from the bottom of my heart. Huge, huge love to all of you. xo, erik

JOHN'S LATEST UPDATE:

hello everyone,

Uma is doing very well overall. I think the main thing she's experiencing on the positive side of things is a sense of hope that she can emerge from her stroke with the ability to have a life that she considers worth living. On the tough side of things she's experiencing a new and more accurate vision of how long it's going to take her to get what she wants.

I'm leaving to see her again tomorrow morning. Can't wait. I miss her so much.

She misses acting.

We talked yesterday about it - she said she wanted to "do Shakespeare"...just get a play and start to memorize lines. I said nothing but encouraging things to her at that time. Later on in the day I left a message for her on her cell phone, suggesting that she consider telling her own story instead of someone else's. She calls me every night after her dinner. This night, after I answered my cell with "Hey!", she burst in with, "Oh my god....that's it, man.....MY story....I never did that......not even with Bart DeLorenzo and the Evidence Room!" On my last visit I gave her a little digital recorder so she could record her thoughts. She's going to try to begin creating what I guess will be a one-woman show at some point in the future.

We talked further about other things......hoping for a brighter future despite the fact that there is so little work for me (thank god for piano tuning - although I keep thinking I'll be able to fully step away from that someday). We also talked about how long she'd be there at Core.

Today she called just as I was finishing a piano tuning. She said, "Ok....I'm just gonna say this one thing, ok?......even if we're penniless, we're still in love." (that is a verbatim quote). I think we can all agree that there are far worse people on earth than Uma.

Two days ago we had a conference call with all of her therapists and her case manager. It lasted about an hour and covered every aspect of her care. I spent most of the time speaking with her hand therapist - I needed to be convinced that she was getting somewhere with that part of it. I can tell just from phone conversations that she's improving in terms of her speech, and I know from her gym schedule that her leg, foot, balance, and stamina are improving.

Every therapist had the same reaction to Uma; they think she's pretty amazing, with nothing but potential for recovery. They are excited to work with her. They see improvement, enthusiasm. One of them told me how Uma basically dragged another patient (who rarely comes out of his room after therapy) out to the common area to play a game with her. Her hand therapist told me that on one day after therapy she, the therapist, actually started to dance around a bit because she was so excited about what Uma was accomplishing.

She's getting real help here and after over four years of trying to get her what she needs and only marginally succeeding, this is a real blessing. Thank you all for what you've done for her and for our family. I hope this email can reach out to where you are with my thanks...this is not a small thing....it's one of the biggest things, bigger than I could ever have imagined. Another way to say it is that it's beyond me - literally - what has happened for her because of all of you is outside of me, of my power, and beyond my own love for her and my hope for her future. I was losing hope in March but now I have it again and so does Uma.

The conference call ended with an estimate given for her discharge. They said that, at minimum, she'd need to stay there a total of six months. We, all of us, have raised enough money for just a bit over three months. The money is out there - we just need to bring it to Core Health.

A very talented theater ensemble is having a benefit for Uma on Wed. June 22nd here in L.A. Please do check out

https://sacredfools.secure.force.com/ticket#sections_a02G0000005Cel4IAC

These are enormously talented people who will make you laugh extraordinarily hard. The whole night's proceeds go for Uma's therapy. Two of the people who run this theater have been just simply nuts-generous for Uma already...and now they're pulling this night off. I'm glad I'll be in town to go see this. I could use a good laugh.

and also http://www.theumafund.blogspot.com/ (if for no other reason than to search for your name among those who've donated).

I've been very busy trying to hustle work and use that as an excuse not to update on Uma's life. No more. I will inform you all much more regularly from now on.

All my thanks and love,

John

####

6/27/11 update:

Everyone,

All my love,

John

####

9/1/11 update:

Uma update 9/1/11

Everyone,

Lots has happened.

As always, with all my heart, thank you.

More to come in a week or so. If I come home from NY in October it means I’ve had success in a very nice project. If not, it means that success is merely postponed. Wish me luck!

John

###

9/11/11 update

John

# # # #

12-16-11 update from John:

Everyone,

Acceptance. It's been a long time coming and may not be a permanent visitor....but I hope it is a frequent one. It's very welcome.

My Uncle Terry and I had a conversation about using the word "recovery" and I've decided to try some different words. As he said, "Language is everything."

Uma is reorganizing. So are the people who experienced hurricane Katrina. Once the storm stopped, their work started. It's still going on and will go on for many years.

It's the same thing for Uma. A storm of blood and loss swept through her brain and "washed" away two thirds of her left hemisphere. In both the most basic and poignant ways, her reorganization will continue until she dies.

The brain does form new neural pathways but this doesn't happen over-night....or over-year. It happens more quickly the more the brain is pushed to reorganize. And Uma has been pushed.......a lot......mostly by me. Fortunately for both of us she is learning to push herself now. And I am learning to let go.

In many ways the most important things that have happened for her here at Core Health pertain to her inner life. As she said, "I had to do it by....uh....for myself....not for John." I agree. By, for, because of herself? I'll take all three and more. She has learned to focus on herself, on what makes her "tick". She is learning to be honest with herself, to observe herself, and to accept what has happened to her.

As I alluded in my email in April, there were tragedies for Uma long before her brain injury. If these things required good care and time before her stroke, they'll require more specialized care afterward. Finding a good "shrink" (as she says) who has experience with traumatic brain injury is really not easy to do. It is a specialty that very, very few psychotherapists go into or encounter. VA hospitals have them....but Uma is not a soldier in the conventional sense. Core Health has one of these specialists and it has been the best thing for Uma throughout her stay here in Dripping Springs.

If a brain injured person can't think clearly, doesn't accept herself or feel that she's worth the effort then no amount or quality of hand, speech, and physical therapy is going to be of any use. This was a hard and a difficult lesson to learn - for both of us. But, using her markedly improved capacity for speech, Uma expresses these things in so many words. She is not holding her pain at arms length anymore. Humans don't usually do this until they are good and ready. She is both.

In terms of post-stroke reorganization, it's now thought that Uma might be approaching the half way point - just as she approaches the 5 year mark of her burst brain aneurysm. As her first neurosurgeon in NY said, "...what she has going for her is her youth."
She will be doing something in terms of therapy for many years. It will always cost a lot of money and we will always try to find both the money and the best thing for her.

Core Health was the best thing for her for most of 2011 (late April 'til now). When we drive home mid-January we'll stop and see my brother (Happy Birthday Wayne!) in Albuquerque and then see the Grand Canyon. I've been there a couple of times but she has never seen it. I can't wait to see her reaction.

There is nothing on earth that can contain the amount of love and support that has come from all of you for Uma. It's not something you can hold inside. It's too big for that and it has spread too far. It's all over the place now. I hope a great portion of it finds its way back to you this holiday season and beyond.

Thank you all for everything so far......

Love,

John

Thank you post from July 2007

2011-04-14T23:27:00.000-07:00

I'm re-activating this blog because Uma's about to start a new neurological rehabilitation program and we're trying to raise money for this amazing (and costly) program. In the spirit of gratitude (both for generosity in the past and future), I'm reposting this thank you message from July, 2007:

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

Okay, here's the email:

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

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

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

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

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

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

Video #1 (56 seconds long)

Video #2 (7 seconds long)

Video #3 (37 seconds long)

Video #4 (44 seconds long)

Video #5 (1 minute, 42 seconds long)

With thanks and love,

Uma, John, and Erik

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

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

p.p.p.s. THANK YOU!

Getting Crafty for Uma

2007-03-30T16:22:00.000-07:00

I just got an awesome email from my friend Aaron's girlfriend Kelli. (It's amazing how people all over the country--no, all over the world--are coming together and spreading love and hope and inspiration for Uma)

Kelli has set up an online craft store for Uma, ALL of the proceeds will go to help Uma and John pay their medical bills. It's an awesome idea, and an awesome site. After all, there are a whole lot of creative people out there who have been wondering what they can do to help Uma--here's a new answer. There are two ways you can participate: (1) Use your natural (or unnatural) talents--make something crafty, put a little extra love into it, and donate your item to Kelli's online store! Or (2), check out the store (www.theumafund.etsy.com) and do some shopping! It's all about love.

Here's more detailed info FROM KELLI:

I think about Uma a lot. I pray for her recovery everyday. She's very blessed to have so many people surrounding her with love and encouragement. You have stated that she and John need assistance with the medical bills and I wanted to help. Here is the plan:

I have set up an account with Etsy.com at www.theumafund.etsy.com. Etsy is a website that allows people to sell their handmade items online. It is sort of like an Ebay for handcrafted items except you don't bid on the items, as they have a set price.

Some members of my knitting group and I have donated a few lovely items to sell and I am expecting to get more items over the next couple of weeks. I am donating the proceeds to Uma and John.

I only have five items listed now. I want to encourage other people to donate items for The Uma Fund shop. The items don't have to be knitted! They just have to be original, handcrafted items! Some of the categories include:

Paper goods, Jewelry, Recipes, Baked goods, Patterns, Books and Zines, Pottery and Ceramics, Toys, Plants, Furniture, Clothing, Art, Photography, etc.

To donate your handcrafted items to The Uma Fund shop at etsy.com, you absolutely must send the following items to umafund@gmail.com:

1. The donator's e-mail address

2. 2-6 good, clear pictures of the item (close ups, different angles, the whole item) ~Pictures must be 1000 pixels wide

3. A list of materials used (this does not have to be exhaustive, just tell me what it's made from)

4. How much you thinks the item is worth (I will use this as a reference).

5. A description of the item (May be edited by me. Trust me, I'm an English major.)

6. What you want to name the item

7. Your understanding that it will be your responsibility to ship the item(s) in a timely manner to the address I (Kelli) provide you via e-mail. Also, you will be donating the shipping costs as well. (If the item does not get shipped in a timely manner, that reflects poorly on The Uma Fund shop, and we want people to like buying from The Uma Shop so that they buy more and cover more of her expenses. Do it for Uma!)

So let's get all creative and crafty for Uma! Check out www.theumafund.etsy.com!

A benefit for Uma, Saturday night!

2007-03-22T21:13:00.000-07:00

If you're in LA...

Please come join us for a lovely evening of chanteuserie!!

Bootleg Presents: SnatchBar in The Bootleg Lobby

Uma Spring into Sn-action!

Saturday March 24, 2007 @ 9pm Snatchbar is the brainchild of several women/men who identify with snatchbearers to make delicious music and art for social change. Each month you are invited to the Bootleg lobby for stellar musical entertainment; a portion of the proceeds will be donated to a different cause each month.

March is the birth of Spring and the re-birth of Uma. We gather to drink and make music and make-out to help Uma Nithipalan and John Ballinger cover the costs of her surgeries and rehabilitation from a recent aneurism.

Doors open at 9…Music starts at 930 with: The Brothers Landau a Superb guitar and cello duo!!! This month, the sassy songstressness of… Elizabeth Guilliams, Laural Meade, Pamela Samuelson, Patrice Quinn ...and on the keys Mz. Brenda Varda!!!!

Cover is sliding scale donation $15 - $30

Bootleg Theater:
2220 Beverly Blvd, LA 90057
(213) 389-3856

nearing 40K

2007-03-14T22:09:00.000-07:00

I haven't had time to update the thank you list for awhile...but I just tallied up the most recent donations and updated the list to the right...we've raised about 2K this week! Amazing, awesome. The donations grand total so far is $38,953.29!

THANK YOU for your continued donations. Keep spreading the word. Let's raise 100K!

much love,
erik

The world is filled with seriously beautiful people...UMAmeter Update: $36,869.99!!!

2007-03-08T23:24:00.000-08:00

I know that I said I was going to post this yesterday, but the math took me much longer than I expected because (1) math ain't my strong suit (like I said, I'm a bad mather), and (2) there were sooooo many donations to tally. Which is my favorite excuse for being late ever.

I have incredible news to report. Two updates. First, the latest Uma Update (because this is obviously the most important update I can share with you):

Uma had an incredible day today. I have a feeling that we have a lot of incredible days ahead of us. Now that she's had a successful shunt procedure, her intercranial pressure levels are decreasing and her fluid levels are getting back to normal. And that should open the door for much faster progress. Some of which we've already seen. This morning she wrote her name. Several times. It's John's birthday today and she signed a card for him! When John texted me the news, I was substitute teaching an 8th grade English class and I almost burst into tears in front of all of the mean 8th graders. I was just flushed with emotion, so was John. I realize that when Uma reads this she's going to think we're all ridiculous for being so excited about the fact that she wrote her name down, but you know what, Urp? Life is ridiculous, the past 37 days have been ridiculous, and you and your left-handed chicken scrawls are beautiful too, damnit!

And now for the second update, the UMAmeter update. Some amazing statistics:

Number of Days: 11

Number of Donors: 450 (and counting...)

Number of Dollars: $36,869.99

Yes, you read that right: we've raised nearly THIRTY-SEVEN THOUSAND DOLLARS! How incredible is that? All of the amazingly generous people listed in the column on the right side of this blog have helped us rocket past our goal to raise $20,000 for Uma's Air Ambulance--all of the support from friends and family, all of the support from strangers--every single donation, every single email, every single card in the mail--it's truly inspiring. We're making the world a better place. I don't care if I sound schmaltzy when I say that because it's freaking true. All of the love--all of the energy that we're collectively putting out there--it manifests itself in the world. It does. And as Uma progresses in her recovery, as she realizes what's been going on while she's been "away," she is going to be overwhelmed. In a good way.

Uma likes to act like a Miranda, which means (if you're not a Sex and the City fanatic) that she's cynical and snarky. However, there's also a side of her that's pure Charlotte, which means (if you're not a Sex and the City fanatic) that she believes in true love as deeply as anyone I know. And all of the love that's been circling Uma this past month, that love is as true as it gets.

We are so excited and impressed by how well the fundraising has been going that we now have a new goal. We've raised enough money to cover the Air Ambulance. Awesome.

But here's the thing: Uma's rehabilitation costs should be covered by Medi-Cal, yet there are still so many expenses that are going to need to be covered. Uma's not going to be able to work for a long time, and John's planning on becoming Uma's full-time caretaker (for as long as she needs a full-time caretaker). Which means that we're going to need to find a way to keep a roof over their heads. And there's the possibility that John will need to retrofit their home to make it accessible to Uma, depending on how long her rehabilitation takes.

So while we're on a roll, let's keep raising money. Let's be bold, let's be crazy, let's raise another $70,000. Whaddya say? Hopefully we'll raise TOO MUCH money and Uma will be all taken care of and then we'll use the money to help other people in similar situations, i.e. other young starving-artist types who don't have great medical insurance and have suddenly found themselves facing the biggest challenge of their lives, i.e. freaking brain aneurysms. There are many other people out there like Uma (we met some of them in the ICU with Uma) and they need our love and support too.

If you want to donate to The Uma Fund via paypal, please click on the link in the upper right corner of this blog. If you'd rather send a check, please email me, Erik, at dimsumday@gmail.com and I'll give you all of the pertinent details. If this email has been forwarded to you and you don't have a paypal link in the upper right corner to click on, go to www.theumafund.blogspot.com.

Even if you only have five bucks to spare, you're making a difference, and we thank you with every ounce of our hearts. (And we've got big hearts, so that's a lot of thanks.) (And I'm bad with metaphors, so I'm sorry if I'm mixing mine.)

Let's make a difference. Let's change the world. We can do it one person at a time. Be that person who makes a difference today. Thank you...

Before I sign off, that reminds me of an anecdote that Uma's dad, Nithi, told me on Day Four. (Day Four feels like hundreds of years ago, but it was actually only 33 days ago. So weird.)

We were sitting in the ICU waiting room. This was back when Uma was still in the coma, before she'd opened her eyes for the first time. Scary days, hopeful days. (I will never give up hoping for Uma to have a full neurological recovery; it may take time, but she's going to get there.) We spent a lot of time during that first week just sitting in the waiting room, praying, praying, praying. Nithi told me this story. I can't remember if it was a true story or if it was an allegory. It certainly sounds like an allegory, but I wouldn't be surprised if it was a true story too, because that's how Nithi rolls. So it went like this: There was this old man, this grandfather, who was making a point about how the educational system is failing and kids aren't learning even the most basic things anymore. Like geography, for example. And to prove his point, this grandfather found a map of the world and he tore it up into several dozen peices and he gave the peices to his grandson and asked the kid to put the map of the world back together, certain that the kid wouldn't be able to. A few minutes later, the kid handed his grandfather the map, taped back together, correctly. The kid didn't actually know what the world looked like, but he was able to put the paper back together because there happened to be a picture of a person on the flip side of the map. And the kid knew what a person looked like. Okay, um, anyway, I feel like I'm butchering this allegory, but the moral of the story was something along the lines of: this kid put the picture of the person back together exactly as that person had been before, and the world on the flip side of the paper stayed the same. The implication being: if you want to change the world, you have to change people first, one individual at a time.

The way that Nithi told this story was much more profound than my weak retelling just now, but the point is the same. Let's keep making a difference. Thank you, and LOVE,

--Erik

Donation tally coming this afternoon...(Colleen, I want a new UMAmeter!)

2007-03-07T08:48:00.000-08:00

I'm going to post our latest "total donations" tally this afternoon--I'm a writer, not a mather, so adding up all of these numbers is taking me awhile--but I wanted to post a quick Uma update because it's freaking exciting:

John just texted me the following: "She's out of the ICU and in her own room."

This is HUGE and awesome and amazing and every other superlative you can think of. Because Uma still can't talk yet (she still has the trach) and she's been in that damned ICU bed for so long that I'm sure it feels like forever to her and she's been really down. But moving to her own room...it's like, John can tell her that she's making progress, but the new room...it's PROOF to her that progress is indeed being made. It's gotta be so, so good for her to feel that.

Uma Hates Having Her Photo Taking, But Check Out All Of These Photos

2007-03-06T13:28:00.000-08:00

Uma, I'm waiting for you to be well enough to tell me to take all of these pictures down.

Last night's theater benefit performance...

2007-03-05T22:25:00.001-08:00

Last night's fundraiser was a great success and I want to thank everyone who made it out to the Elephant Lab theater to partake in the festivities. The theater was (mostly) packed and we raised $1,280 for Uma! In one night! I am continually amazed by the generosity of strangers, it's a freaking beautiful thing.

It was very moving to hear David Nathan Schwartz' story of recovery, and everyone left the theater with visions of Uma having an equally remarkable recovery.

I haven't tallied up the donations in several days (I've been keeping track of the names of the donors, I just haven't gotten out the old calculator to find out the official tally), but donations continue to come in and we are so grateful for all of the generosity. Beyond the initial air ambulance need, there are going to be many other needs down the road, and your donations are going to help make this upcoming year much less stressful on John and Uma.

Thank you!

Thank you list

2007-03-03T03:38:00.000-08:00

If you've made a donation and you don't see your name on the list to the right, please check back here on Monday...I won't be able to update the list until then...THANK YOU for all of your support, and sorry for the delay. Love and gratitude to all of you.

THANK YOU, and keep Uma in your prayers and good thoughts

2007-03-01T22:56:00.000-08:00

FIRST: Thank you, thank you, thank you to all of the amazing, generous, beautiful people out there. I've gotten several emails today from people saying that all of the giving has reaffirmed their faith in humanity. It's a beautiful thing that's been happening.

SECOND: John sent out an email earlier tonight, expressing thanks for all of the donations, and I want to post his thank yous here too because we seriously cannot thank you all enough. From John:

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

THIRD: If you live in Los Angeles...and you're still looking for a way to help out...the awesome David Nathan Schwartz is doing a benefit performance of his show "My Brain Tumor: A Mind Expanding Comedy" for Uma on Sunday night at 7pm at the Elephant Lab Theater...tickets are only 30 bucks and all of the proceeds go to Uma. We still have plenty of seats left and I'd love to see you there. Thank you for all of the love and we hope you'll join us Sunday night for an amazing, heartwarming medical-miracle of a show! PLEASE CLINK HERE FOR MORE DETAILS,or CLINK HERE FOR TICKETS. Thank you!!

FOURTH: I haven't done today's tally yet, but I think we brought in a couple more thousand today. Again, thank you, these last few days have been awe-inspiring. I'm actually out of UMAmeters because we busted past 20K and that was the highest UMAmeter I had. (Thank you to Colleen Wainwright for designing the UMAmeters--Colleen designed many UMAmeters, one for each thousand mark rung in the ladder towards 20K, and the fact that I didn't get the opportunity to post so many of her images--because we shot to 20K so quickly--is crazy, but thank you, Colleen, for the images.) (Oh, and if you want to donate but haven't yet, don't let the fact that we've reached the tip of our UMAmeter stop you--we still need your support. The full green UMAmeter means that we will definitely have enough money for Uma's air ambulance, but there are of course other needs.)

FIFTH: Thank you for all of your prayers and good wishes and visualizations. Please keep them up...

with so much love,
Erik

$21,454.38!!!!!!!!!!!!!

2007-03-01T01:25:00.000-08:00

Amazing! In just three days, we've already broken the UMAmeter. As of this evening, the total amount raised for Uma's medical expenses is $21,454.38!!!!

How freaktastic is that? Thank you to all of the friends, family, and strangers who have supported us--your names are all listed over there on the right side of this page and you are all beautiful people. As I've watched the donations come in these past few days, it's been breathtaking. There is so much goodness in this world. We will definitely be able to afford the air ambulance to bring Uma back home and for that I thank you with all of my heart. I want to give each and every one of you a nice, warm hug like this one:

We have achieved this first goal, and it's awesome. But if you haven't donated to Uma yet, you still can. There are still many other medical expenses that will need to be covered, and we thank you for your continued support. Making donations is super simple: you can either click on the "make a donation" button in the top right corner of this blog, or if you want to send a check you can email me at dimsumday@gmail.com and I'll give you the pertinent details.

Also, if you live in Los Angeles, there is going to be an awesome benefit performance of David Nathan Schwartz' one-man show "My Brain Tumor: A Mind Expanding Comedy" this Sunday night at 7pm at the Elephant Lab Theater. More details HERE. Tickets are $75 and all of the proceeds go to Uma. David doesn't know Uma, he doesn't know John, he doesn't know me--but he read about Uma on Bonnie Gillespie's blog and he was moved by what Uma's going through and he offered to help out by putting on this benefit performance. It's very exciting, and if you'd join us for an evening of good theater--followed by some good boozy times (we'll have lots of wine)--we would be so honored to have you with us. After the show, I'll probably tell some Uma stories and talk about what it's been like for her at the hospital. I'll share some stories that haven't made it to the blog. I know that a lot of you are tapped out right now because you've made incredibly generous donations, but if you're still looking for a way to participate, this should be a very fun night. There are only 40 seats in the theater, so seating is limited. Make your reservations now.

*

(Oh, and a quick question about the list on the right: I've only listed the names that showed up on the paypal account, but I assume that some of the donations came from couples, rather than just one person. If you have a spouse/significant other that you would like me to list with your name on the right, just let me know and I'll make the correction. I don't want anyone to feel left out or unthanked! All of your support is so greatly appreciated and you should all feel the love.)

$13,807.09

2007-02-28T00:21:00.000-08:00

Check it out:

$13,807.09 to be exact.

In two days. How cool is that?

Thank you and keep spreading the word. Now, let's not merely achieve our goal this week, let's freaking demolish the thermometer while we're at it.

$10,000!!!

2007-02-27T20:30:00.000-08:00

I am completely blown away by all of the generosity and love out there. I haven't tallied up all of today's donations yet, but we've definitely passed the $10,000 mark! I want to send out a huge thank you to everyone listed in the right-hand column, you are all beyond rockstars. So many generous contributions. Crazy, beautiful, lovely--thank you. I will tally up all of today's donations before I go to bed tonight and post an exact figure of where we're at, but I just wanted to let you all know the exciting news that we've definitely passed the $10K mark. So freaking awesome. Thank you.

Check out the UMAmeter! It gives me goosebumps!

I talked to Marie earlier tonight and Ums is still doing well. She had a CAT Scan today and the results looked good. I am going to talk to her again soon and I will report more on my blog when I have a more detailed report.

IT IS SO AMAZING ALL OF THE LOVE AND SUPPORT FOR UMA OUT THERE! Thank you!

UMAmeter!

2007-02-27T03:02:00.000-08:00

THANK YOU SO MUCH FOR ALL OF THE DONATIONS THAT HAVE BEEN MADE SO FAR. As of this morning, Tues February 27th, we were at $5,000! (Hence the updated UMAmeter, above.) Donations are continuing to come in and I will post a new UMAmeter either tonight, or tomorrow morning.

*

Uma seems to be getting more and more aware of her situation and of the long road of recovery that she has ahead of her, and she's kind of melancholy right now. I can only imagine that it must be incredibly frustrating to not be able to talk to us, to not be able to communicate. She will be able to talk soon--let's visualize that. And let's also keep sending her thoughts of love, and heaps of joyful energy too. So keep dancing for Uma and sending those healthy, happy dance vibes her way. Thank you.

Raising money for Uma's Air Ambulance!

2007-02-27T02:53:00.000-08:00

This email is going out to all of Uma Nithipalan's awesome friends and family (and friends of friends):

Uma should be able to move out of the ICU and into a neurological rehabilitation facility within the next two weeks—possibly as soon as this week. We are planning on moving Uma to an excellent rehab facility where she can receive the best neurological care possible. We are close to finalizing her rehab facility, and will let you know as soon as we know. Thank you to everyone who has helped on that end. Uma has received so much love and support, and we are all incredibly grateful for it.

I'm sending out this email because we now need to arrange for Uma's safe transport. Because of her still-fragile medical condition, it looks like we must book an Air Ambulance with a nurse escort that costs approximately $20,000. We're hoping to raise this money in the next week so John doesn't have to put it on a credit card. I'll explain how you can help out in a moment, but first, in case you don't know all that Uma's been through this past month, let me backtrack:

Uma is a smart, mischievous, funny, irreverent, snarky, deeply passionate 27-year-old woman. On Tuesday, January 30, Uma flew out to New York City to visit her fiancé John, a musician who was in New York for a gig and who had proposed to Uma on Christmas eve. Uma's usually the type of person to take her time before making any big decisions—if you watch "Grey's Anatomy," Uma is very Cristina Yang—but this was a moment that I think Uma was secretly hoping for, waiting for, ready for; she said "yes" to John immediately and then started calling her closest friends. I've never heard her sound so happy. John has been by her side at the hospital since this happened and he will be with her every step of the way as they continue on this journey.

Early in the morning of Wednesday, January 31st, Uma had a series of seizures. Fortunately, she was with John and he was able to get her to St. Vincent's Hospital, where they discovered she had a brain aneurysm, which had burst. By that afternoon, they had coiled the aneurysm, but Uma was in a Stage 5 coma and the doctors told John that Uma was probably going to die or remain in a vegetative state the rest of her life. That was a scary freaking day. BUT:

That was 27 days ago. And Uma has repeatedly confounded her doctors (in a good way) since that scary freaking day.

Uma has had many ups and downs this past month—including a stroke—but despite what the doctors told us on that first day, her health and neurological condition continues to improve. On Day 13, she opened her eyes for the first time; on Day 15, she started focusing her eyes on us and really waking up. Since then, she's been trying to talk (the tracheostomy in her throat prevents her from making any sound, but she is TRYING), she's been trying to move the right side of her body (this is the side of her body that was affected by the aneurysm and has shown only limited movement, but there is SOME movement), she's been smiling, she's been frowning, she's been rolling her eyes at us when she gets annoyed, and she's been laughing at (some of) our jokes. She's also been getting frustrated at her inability to communicate as she becomes more aware of where she is and the journey ahead of her.

She is showing us many signs of Uma-ness. Every day is like a little miracle. The doctors are weaning her off of her ventilator, as well as weaning her off of all of the other tubes and machines that she's currently connected to. This is all very exciting.

Any help you might be able to offer would be incredibly appreciated. We have already raised $1,000 (and THANK YOU SO MUCH to those of you who have already made donations to Uma) and I feel like we can raise another $19,000 easily. If we can find 950 people who would be willing to donate 20 bucks, then boom: we've made our goal. And if I've learned anything in the past month, it's that anything and everything is truly possible. Dream big, live big, HOPE big.

If you can donate more than 20 bucks, that's awesome and amazing and much appreciated. If 20 bucks is way too much for you right now (and believe me, I know the feeling), even a five dollar donation would help. Thank you in advance. We couldn't do this without all of your love and support and visualizations. You are all rockstars.

We are collecting donations via PayPal. If you don't already have a PayPal account, please follow the simple instructions (listed below) to open an account. It literally takes 1 minute. Then click on the SEND MONEY tab and send your donation via John's email (john.ballinger@sbcglobal.net).

Or, if you'd like to find out where to send a check, email Erik at dimsumday@gmail.com.

PLEASE FEEL FREE TO FORWARD THIS INFO ON TO ANYONE YOU THINK MIGHT BE ABLE TO HELP.

I will update the UMAmeter daily. (Thank you, communicatrix, for your UMAmeter design!)Let's get Uma back to California!

much love and gratitude,

Erik (and John)

HOW TO MAKE A DONATION

2007-02-27T02:52:00.001-08:00

HOW TO OPEN A PAYPAL ACCOUNT:

(My grandmother asked for "explicit paypal instructions," so I'm going to make this as easy as possible.)

1. Log on to http://www.paypal.com/
2. Click on the "sign up" button at the top of the page
3. Select "personal account," select which country you live in, then click on "continue"
4. Enter your personal information, choose a password, then click on the "I agree, create my account" button at the bottom of the page
5. You will receive an email from paypal. Open the email, click on the link, enter your password, and voila, you have a paypal account. (See Grandma? Very easy.)

THEN, TO MAKE A DONATION:

1. Click on the "send money" button
2. Enter John's email in the first box (john.ballinger@sbcglobal.net), the amount of your donation in the second box, in the "category of purchase" box you should select "cash advance," and then fill out the other boxes as you please. Then hit the "continue" button.
3. Enter your credit card info and billing address, then hit the "add card" button.
4. Then you should be brought to a page that has your "payment details." If everything looks good, click on the "send money" button, and you're set. Paypal will then send you an email to confirm that the payment went through.

OR, IF YOU'D RATHER MAKE A DONATION BY CHECK:
Email Erik at dimsumday@gmail.com and he will give you all of the pertinent details (where to send the check to, etc.)

Again, thank you, thank you, thank you!