Tuesday, May 08, 2007

latest Uma update

(I'm sorry I haven't posted in two weeks!) (many apologies!) (life) (but I'm gonna try to get back to being regular again.)

Dear friends and family...

It's been a really long time since I've sent out an Uma update—-about two weeks, actually—-and I've started to get worried emails from people—-asking me if everything has been okay—-so I realized that I need to get back on the ball with the updates. John wrote an update last night and his update describes Uma's daily routine pretty wonderfully, so I won't go into a lot of detail, but suffice it to say: every day she gets a little bit better, every day her walking gets a tiny bit more assured, every day she gets out a new word. So I'd say she's doing pretty amazingly.

A quick anecdote: I spent a few hours with her today while John was working in the studio with Ken, and we decided to go for a walk. Uma and John usually go on a walk in the morning—-down the street to get coffee—-and Uma sometimes goes on walks in the afternoon, so this wasn't anything new for her, but this was the first time I'd gone on a walk with her, so I was excited for us to venture out into the world together. I knew that the longest walk she'd been on so far was to Franklin and back—-which is 6 blocks each way, so: twelve blocks. Okay. So that's what I figured we'd do.

Uma and I started out on our walk and Uma was very confident. She didn't even need to use her cane. (In fact, when I asked her if she needed it, she gave me SO MUCH ATTITUDE, as if to say: "haven't you been paying attention? I don't need to use that damned thing anymore.") As we walked down the street, I flashed back on her days at the rehab facility when she was taking her first difficult steps...that was just over a month ago—-and then I flashed back on two months ago when she couldn't even move her right leg AT ALL—-and here she was walking through her neighborhood—-without a cane, without anyone's help—-walking so well. I don't want to overuse the adjective "amazing," but I can't think of another word right now.

When we got to Franklin, I told Uma it was time to turn around, and she said "no," and then pointed ahead. She wanted to walk further. "Okay, let's go," I told her. So we walked another block. And then when we got to the end of that block, I told her it was time to turn around and head back. "No," she told me, and pointed ahead. I told her we should really probably turn around, but she was adamant. So I gave in: "alright, let's go another block." So then we walked another block, and when we got to that next block, Uma was excited and enjoying herself and totally into the walk…so we went another block. By now we'd walked a total of nine blocks and Uma finally decided she was ready to turn around. So then we started heading back and by the time we got back to Franklin we'd walked twelve blocks, which was the longest walk Uma had been on so far, and by the time we hit block twelve...

...Uma was tired and so completely ready for the walk to be over. But she had insisted on walking further, so now we still had six more blocks to walk. Uma asked me, "when?" I finished the sentence for her: "When are we going to get home?" "Yes," she said. "We have six more blocks to go." Then Uma asked: "Why..." And I finished: "...why did I let you bully me into walking those extra blocks?" Uma laughed: "Yes."

Those last six blocks were tough. Uma was exhausted, so we'd walk about ten feet, then we'd take a break.

Have a sip of water.

Stand in the shade for a beat…

...and then we'd move forward another ten feet.

Then, again: pause, water, shade, then walk. And again: pause, water, shade, then walk.

Literally taking the rest of the way home in these little ten feet intervals.

As we walked those last few blocks, Uma started getting frustrated, tired, cranky, but we were almost home. We just had to get over the bend. (I know this sounds like some parable, but I swear to you there's a little hill right before you get to their house, so we LITERALLY had to get over one final bend.) We took one final break in the shade, one final sip of water. And then we continued on. Until finally—-finally—-we got back home and took our shoes off. Then Uma got into bed, ready to rest.

Anyway, (and this is parable time, for real) as far as Uma's speech therapy goes, I kinda feel like Uma's at the beginning of walking those last six blocks home. They are LONG blocks she still has to walk down—-who knows how long it will take for her to get all of her words back-—it's probably going to take a really long time. But every day she moves a couple inches forward. The thing is, she seems to comprehend everything that's going INTO her brain, but her words need to find new pathways to GET OUT, so it's kind of like she's learning how to speak again one word at a time. Which is tough, and grueling, and frustrating. But eventually she IS going to have all of her words back. I know she is. She's just gotta keep moving forward in these little intervals, and eventually she'll be "home" again, in every sense of the word.

Thank you for all of your continued love and prayers and good thoughts for her.

Here's JOHN'S LATEST UPDATE...(5/6/07):

hello everyone,

it's been a long, long time since last i wrote. in an
explanation of why i haven't sent an update in so long
i can start by saying that i now have an entirely
differnt brand of respect for my mother and father.
as the person who gets the therapists, sets the
schedule, sets the alarm, makes the breakfast, helps
dress her, gets her to the therapists, makes lunch,
does the laundry, the dishes, makes dinner, helps in
the shower, makes music on the side to pay the bills,
and gets her medication ready, i now see a little bit
of what it must of been like for my mom and dad who
both had full time jobs and took care of us three
kids. this is love on a different level. it's love
in action and it has left little time for words (or
anything else) lately.

we've been out of rancho los amigos national
rehabilitation center in downey for about 2 and a half
weeks. of the many things she can do now that she
couldn't do then are - reach down and pick up things
from the floor, carry dishes back into the kitchen,
get things into and out of the frig, wash some of her
dishes, put toast in the toaster, answer her cell
phone and have limited conversations, change the
channel on the tv, walk up the stairs without dragging
her right foot on the lip of the stair.....etc.
there are almost too many things to tell about.
there seemed to have been a plateau upon getting home
but that turns out not to be true.

to have seen her go, literally, from not even seeing
me to walking out of rancho with a cane on her way to
her first in 'n out burger in months marked a
progression of amazing speed. but now the progress is
measured differently. whereas she has been able to
ambulate with both legs, now she is working on the
finer details of what walking means. she must
reconnect with the muscles that her brain has
forgotten about. this is a deeper level of brain
activity than the gross movements we saw at rancho.

just about everyday she says something, some word that
she didn't say before.

usually she can move her fingers on her right hand a
little each day.

i honestly don't remember how this differs from the
last email i wrote but the difference for me is that
she is more 'there', more aware and present each day.
we were walking back from dinner tonight (!) and i was
checking in with her about how best to spend the
fundraising money on her recovery. a few minutes later
a fellow musician friend of mine named ken lasaine
was walking towards us. we greeted each other,
exchanged some words and moved on. i told uma, again,
about the fund raiser and emails and life-changing
activity people have undergone learning about
her....and i mentioned that he, ken, had donated to
her fund. well, THIS time it finally hit home with
her just how much has taken place in this regard. she
just kept on saying, 'wow!' almost until we got home.
she was truly amazed and overwhelmed by this. the
thing is, i have told her about this on numerous
occasions but never has she reacted this way to the
news. she is amazed. she is overwhelmed. she
understand what you all have done for her.

we have hired two out of probably only 7 physical
therapists in southern california who not only have
doctorate degrees in the field but who are also
neurologically certified. since the gap in time
between rancho's in- and out-patient programs was so
wide, we have so far, decided to pay for pt and st at
glendale adventist hospital. the speech and physical
therapist there are really good matches for uma - they
are really good (if i'm any kind of reluctant expert
now) and really nice and really tough and true in
their vision of her path to recovery. we see the
speech and physical therapist there 3 times a week
each. we also have hired an associate professor of
physical therapy from usc to come to our house twice a
week. both pt's are co-ordinating with each other to
maximize her work. so....by saturday, uma is pretty
worn out....but today, at her suggestion, we ate
breakfast (eggs scrambled with asparagus, tomatoes,
onions and garlic with toast) on the front porch
(first time ever) and then we went to the beach. she
is really waking up.

we've been back to rancho for a physical therapy
out-patient evaluation but the program for her
wouldn't start for another 6 weeks. her speech
evaluation was performed by someone who, honestly,
didn't do a good job. having been through so much in
terms of different therapists and in interviewing and
being evaluated by a number of therapists i've learned
a little bit about what the job(s) mean. of the three
speech therapists we've seen since she left rancho,
two of them were truly prepared, worked in really
efficient and penetrating ways with uma and got really
amazing results from her. the third was from rancho.
long story short, we've decided to use the fundraising
money by hiring the therapists we have now. they are,
in my opinion, the best for her and her recovery. we
have enough to last us about 8 months of 8 therapy
seesions (5 physical, 3 speech) per week. this is a
LOT of rehab but she is determined to recover all the
way. i just wanted everyone to know how this is
going and, in a way, how your donations are being

uma loves being at home. our routines are nicer now
than a few weeks ago and they change everyday because
she can do more everyday.

i've never been through anything more life-changing or
exhausting or that has elevated my gratitude. but i
feel like i want to begin writing about her again -
or, at least, i feel like i have the energy. i don't
think i can do it every night like i did before but
i'm going to do it at least once a week. i think erik
is going to begin writing again too.

so many thanks to all of you.

all my love



Marie said...

I'm glad you wrote again finally, Erik. Though I do believe you are fired from going on walks, or at least from DIRECTING walks - I think even Uma agrees. I'm sure everyone would love to hear this little anecdote about Uma from this morning that paints you in an irresponsible light...

On the drive home from therapy today, Uma and I were playing a little something we like to call "200 Questions" (not a typo), where Uma wants to say something, and you just guess and guess and guess, and she uses as many words as she can come up with, and you get more and more hints, and she tells you quite clearly when you're on the wrong path, or when you're getting closer, until you finally settle on the answer. ...at which point Uma is thoroughly relieved, gives a big "YES." (big sigh, leans back in chair/car seat/what have you).

So we were playing this "game" (which I'm sure you've figured out is not really a fun game, but can very frustrating for her), which started pretty quickly after we got in the car. After about ten minutes, we had been struggling but I finally narrowed it down to: 1. She wanted me to know something about yesterday, and 2. Erik would know what it was. So I called him, explained, and handed over the phone. They had a similar struggle for several minutes, and she was getting more and more frustrated and upset (what I heard was mostly, "No. No. Yeah...no. No no!!") But finally, she said "Yes! That's...YES!" and handed me the phone, exhausted. And Erik tells me: "She wanted you to know that if you go for a walk, please don't take her as far as we went yesterday."

Then we laughed about it. She even imitated herself trying to tell me, and laughed and laughed. Thank god for a sense of humor. But seriously, Erik - no more walks without supervision.

Erik said...

I can't believe you fired me, Marie!

Okay, maybe I can believe it...when I got the phone call today and found out that Uma was trying to tell you about our too-long walk, I felt extra guilty.

But in my defense, it was still a GOOD walk!

Um, yeah. Okay, I'm fired.

Anonymous said...

uma is so lucky to have you, all of you. and vice versa.