Wednesday, April 18, 2007

Home, Sweet, Home...and some things to visualize re: Uma's speech

So...Saturday night was the practice night at home...Uma still had to go back to the rehab facility for two more nights...but now she's officially checked out and HOME!

The latest update:

I just got home from spending the evening with Uma and John AT THEIR HOUSE (because Uma is HOME, finally!) (as in, NO MORE FREAKING HOSPITALS), and I was about to write an Uma update, but then I got John's update, and he says everything I wanted to say. So please read his email below. I'll just add a couple of thoughts:

(1) Hanging out with Uma at her own home after so many days of hospitalness is one of the greatest things in the world.

(2) It's been a while since I've asked you all to visualize anything...keep visualizing her brain finding new pathways to get the words out. It has become very clear that Uma DOES have her memories and that her personality is intact--which is one of the big things we've been praying for--and I can tell you that Uma is Uma, inside and out, in all of her wonderful, snarky, loving, Umaness. The final piece of the Uma puzzle that Uma needs to express all of her Umaness is, obviously, her words. I've been working with her on her speech whenever she'll let me. I've been trying to make it fun, or if not fun, to make it at least not seem like "work." To make it as casual as possible. Because working on her speech gets really frustrating for her and it's taxing and she only tolerates it in short bursts. Basically where she's at with her speech is:

(a) She comprehends what is being said to her and she can give very definitive "yes" and "no" responses.

(b) She can starts sentences: "I want..." "You want..." "We want..." "It's like..." "No, but..." etc., but she can't yet finish her sentences.

(c) She can read and comprehend written words.

(d) She can read written words aloud. But sometimes it takes her a few times to get them right. Life, for instance, we were reading the months of the year and she read "February" as "Debuary," but then we worked on it and she got out "February." Using the dry-erase board, and working with Uma for about forty minutes, I heard her say every day of the week, every month of the year, several names of friends, names of several restaurants in Los Feliz (I asked her which restaurant she most wants to eat at in the area, and she chose the Edendale Grill), as well as some sentences that I had written on the dry-erase board. Sometimes she'll get stuck on a word. Like, she got "Monday" down really well, and then we moved to "Tuesday" and she said "Monday" again. But she knew it was wrong and then she got that look of "ooooo I'm so frustrated" and I said Tuesday for her and she looked at my mouth and watched how the movement worked and she got "Tuesday" out. One of the tricks I learned from her weekend speech therapist at the rehab facility was to help ease her into saying words by giving the word a build-up. For example, if you ask her what color the sky is, she has trouble finding the word out of nowhere. Like, the words in there in her head, but her "word file" is all scrambled and so she gets frustrated because she has no idea where that word is, and she keeps thinking and the more she thinks the more lost that word gets. Like when you can't find your keys and you look all over the house and then thirty minutes later you find your keys on the dresser, which was the first place you looked. Her words are sitting somewhere in her brain and right now she's looking all over her damned brain to find them, and when she eventually does find them it'll be like, duh, they were right there all along. She also has trouble repeating words sometimes. She hears what you're saying and she knows the word, but mimicking and repeating that word back to you isn't always the easiest thing. BUT, when you saying something to her like, "red, white, and...," she can finish the phrase without skipping a beat. She'll say "blue" very clearly and fully. Much more easily than if you were to ask, "what color is the sky?" Anyway, we were working on days of the week and I was trying to say things that would fluidly lead to a "fill in the blank" moment with each day of the week, and the phrases I was coming up with were kind of pathetic, but Uma and I had a really nice moment with "Sunday." I asked her to think about "that one U2 song," and then I started singing "blahblah bloody blahblah...blahblah bloody blahblah" and she laughed at me, but she knew the song, of course, and then she sang with me, "Sunday bloody Sunday...Sunday bloody Sunday..." She sang each word completely perfectly and clearly, and she even sang the words with perfect pitch and melody.

Hopefully that gives all of you a really clear image of where Uma's speech is right now and the kind of progress we want to visualize for her in this area. Visualize Uma being able to find the words that she wants to find, visualize those words creating a new pathway from her brain to her mouth, so that she can get the words out without having to read them. Visualize the beginnings of sentences AND the ends of sentences, like, streaming out of her mouth. Hear her voice in your head--it's a good voice, and we're hearing more and more of it every day--let's help Uma continue to push that voice out into the air.

Also, one last thing: please keep sending Uma your loving energy so that she has the strength to get through her frustration. She is massively frustrated about not being able to communicate as fully as she's used to communicating. This whole not-being-able-to-speak-fully thing is still very new to her--we were talking to Uma and we discovered that her clear memories of the last 77 days really begin about two weeks ago. After she had the new shunt, after her ventricles decreased, and after she was finally off a lot of the medications she was on...so, while we've been helping her fight through this brain ordeal for the better part of the last three months, it still feels relatively fresh to Uma and she's still dealing with the newness of feeling like: WOW, I HAD A BRAIN ANEURYSM BURST AND HOW I LIVE MY LIFE HAS CHANGED DRAMATICALLY. Fortunately, I think the thing that keeps Uma strong is that even though so much has radically changed ( i.e. having to relearn how to speak, having to relearn how to walk, etc.), the most important part of her life is still there and 100% grounded and unchanged in his love for her (or, if it's changed, it's changed in a good way--it's grown), and that's John. He's amazing and I am in awe of him every day (and before I go to bed I send him love and energy too, so that he will continue to have the strength to be as 100% as he is).

Much love to all of you, and here's JOHN'S UPDATE:

MONDAY NIGHT:

Hi everyone,

I'm lying in the cot that Colleen Kane loaned to me,
right next to Uma's hospital bed. I've just put both
her night time casts on....one for the right leg, one
for the right arm. She tolerated the leg cast for 2
hours the first night, 3 the next until the pain from
keeping her leg straight and her foot bent at a right
angle was just too much. She can tolerate the arm cast
for about 6 hours a night. We just cut short an
episode of 6 feet under (thank you again Sezin!)
because she was tired. I hear her yawn, the hospital
bed inflating and deflating strategically to prevent
bed-sores, and the noise of the nursing station
through the closed door of her room. This is our last
night here.

The length of each day in hospital is just profound. I
remember, before all this happened, how I would
complain that my days seemed shorter and shorter the
older I got. The last 76 days seem to be my entire
lifetime. This feeling, in a lot of ways, carried over
into our 'over night pass' last Saturday night and
into Sunday.

On Saturday we went home after her therapy was over.
There was a mistake on the part of the doctors and
charge nurse on the previous day in that they forgot
to make arrangements with the pharmacy to get us her
medication and that, although the doctor signed the
order, the charge nurse didn't file it. We had to cut
short our In 'n' Out burger lunch to return to the
hospital for the medication. But we made it home and
later that night I cooked for Uma, Erik, myself, and
my brother Wayne. They all thought it tasted amazing.
I'm not tasting food so well yet. Maybe soon. It was a
really great night. It felt so good to be home. Out of
all the things I thought would be deeply felt by me,
the one that stands out is how wonderful it was to
sleep or sit or cook or eat and feel the breeze coming
in through the open windows. The other feeling that
stands out is how wonderful it was not to have to wake
up and see someone taking Uma's blood pressure or
giving her a breathing treatment.

On Sunday we slept in. I cooked a big breakfast and we
began the 6 feet under fest. It was pretty heavenly I
have to tell you. She was so happy and looked so
peaceful. Lying there in our bed, windows open, breeze
and the sounds of life coming in.

But another feeling I didn't expect was that of being
overwhelmed. In some ways, leaving the hospital is
scary - not as scary as being IN one but
still......She can do very little right now. I will be
cooking, cleaning, doing the laudry, shopping for us,
making all the plans for everything, and creating
anything that needs creating. And by all accounts, she
will be trusting me with all of this. And, almost all
the time, that is comfort enough.

TUESDAY NIGHT:

Now it is Tuesday night. I just couldn't stay awake to
finish last night. We've been home since about 1pm.
She watched TV and napped while I cleaned house and
clothes, made order of all that I could, threw away
MANY things, and napped myself. Erik came over about 4
just as Uma and I were about to have tea on the front
porch. (we've never had tea there.....I just thought
it would be nice - especially since my brother rebuilt
the porch). He joined us but soon I went in to tend
to the business of "follow-up" for Uma. Erik started
working with Uma with the writing board, using
creative ways to cover the spelling, choosing, and
saying the days of the week, months of the year and
what typically happens in those months, phrases common
to americans, etc. They laughed a lot but got a lot
done, too. I went to the market and made dinner for
the three of us: salmon grilled in garlic, butter,
carmleized onions and tomatoes, salad of field greens
and carrots, steamed broccoli and baked red potatos.
Why not, right? It's better than hospital food.

While Erik washed the dishes I showed Uma a notepad
that I found on the couch upon my return to L.A. On it
she had written dozens of notes about her life....like
an outline of the story of her whole life. The
captions were telling and deep, and sometimes very
funny. They spanned from her very early childhood to
now. The amount of words she can say and the clarity
with which she will respond to me made it very easy to
determine that she remembers all of this. Erik came in
and I told him what we were doing and he said to Uma,
"You remember all of this?" She nods and says, "yes,
but...." and I say, "Do you remember everything except
the aneurysm and the New York hospital?" and, before I
even finish the sentence, she says, "Yes". I like
that......."Yes".

So.....there are so many things to do and so much work
to be done for her - her right arm and hand, her
speech, her balance and walking, her sense of herself
and the community, getting the right kind of help for
her in and out of the home, finding a way for me to be
in my life, me learning to manage all of this too,
etc, etc, etc. ......but tomorrow is a day off from
all of it. We are going to have a Kathy Bates film
festival tomorrow. Erik and asked her, again via the
write board, if she wanted a film fest of an actor or
actress? She wanted an actress. He began writing
several names down and I blurted out, "What about
Kathy Bates?" Well....she ended up picking that and
then we listed the more memorable movies she's been in
and Uma and I will go down the street tomorrow
sometime to Jerry's video reruns and get as many as we
can. In between shows I'll do range of motion on her
right arm, make her stretch her right leg and do
resistance exercises with it, cook, eat, nap, etc. and
generall try and ignore the phone.

That being said, visitors are welcome here after
tomorrow. Please email me or call and tell me what
you're thinking of.

There was a man, a father, in the waiting room with us
at St. Vincent's in New York. His 22 year old daughter
was hit by a bus. He updated me via email tonight and
told me they are finally leaving to go to Columbia. He
and I shared a lot of moments together that are simply
indescibable. He and I know something about life that
not everyone does. I wrote back to him, among other
things, that Uma was lying next to me in OUR bed and
that with all the love I feel for her I am praying
with my whole soul for his beautiful daughter and for
him. The tears that came were different than the ones
I cried earlier today. They felt better somehow.

Thank you all for praying for Uma and thank you in
advance for the prayers and love you will be sending
her in the future.

Love,
john

2 comments:

jennifer Hawkins said...

This is soo amazing, there is no place like home. It's easier to feel like your self in comfortable surroundings that resemble normal life. I love ho wyou describe her lyingnext to you, it's that feeling that I can relate to, it's so natural and wondering to be back doing the same things you use to and just having that person there that use to lay next to you- well I can relate, it is like coming home. Best wishes andlove and visualizations. I hope to see the both of you soon!
Jen

goingRAWr! said...

i'm so freaking happy.
uma, you did us proud, i knew you could do it, and each day you will continue to astound us!
IT'S THE POWER OF LOOOOVEEEEE.. and Uma Power too of course.
xoxox always
Miin