Monday, May 30, 2011

5/23/11 update from John

Sorry I didn't post this update'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:


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 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.



Tuesday, May 17, 2011

5/14/11 update from John

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.



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 and me.....what we stay'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"
"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.



Wednesday, May 4, 2011

Halfway there!

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!