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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
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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,
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
