Monday, December 19, 2011

Video Update from Uma & ebay auction

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:

video

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!

Friday, December 16, 2011

12-16-11 update from John


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

Monday, September 12, 2011

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

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...

###



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

Monday, June 27, 2011

uma update 6/27/11


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...

[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









Thursday, June 23, 2011

Thank you, Burglars of Hamm!

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.

Thursday, June 9, 2011

6/9/11 update from John

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

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