Friday, April 13, 2007

a few updates, kinda behind on posting...

I’m on a writing deadline and I’ve been working pretty strenuously which means I haven’t been out to see Uma since Sunday, and I haven’t even posted an Uma update from last weekend, and I’m going to see her again tomorrow (Friday) and I really want to post an update before tomorrow because if I wait until after tomorrow then I’ll have all of these NEW things to say and maybe I won’t get to last week’s update. And there are too many good things to report from last weekend that I don’t want to skimp out on any of them. Even though it’s 2am. I just drank a really huge thing of Coca-Cola, so I think I’ll have sufficient energy to write a long update right now. Okay, so. Here goes.

I’m gonna do it list-like, since this blog hasn’t seen a list in a while.

1. I spent a lot of time with Uma last weekend. She's doing incredibly well, but I don't think she knows how well she's doing because I don't think she can relate to just how dire her situation originally was. She tries to talk and she can't find the words and then she gets incredibly frustrated. But there was a time not so long ago when she wasn't even TRYING to talk, and then there was a time not too long before that when she was in a motherfreaking coma. So not being able to find the right words right now--even though it's incredibly frustrating for her--it's okay, because the words are in there, and her brain is going to retrain itself to find those words.

2. That being said, it's really frustrating and hard to watch her being frustrated. John is amazing and so in tune with her and really good at guessing what she's trying to express. Thank god for John. Seriously, I have a bottomless bucket of love for him because he's just so GOOD.

3. She has certain phrases that she can say really well. She says them so well, in fact, that she gets stuck on them. I think what's happening is that she gets stuck when she's really TRYING to express herself, and these certain words and phrases that she's gotten DOWN are words and phrases that she doesn't have to think about anymore. So they come out easily, and then when she starts TRYING to express herself…that's when the word clog-up occurs.

4. Like the phrase "I want." She has that phrase motherfucking DOWN. She can say that phrase like nobody's business. But then..."I want...I want...you want...I want...we want." She gets stuck. On Saturday, I was sitting with her and she started in on the "I wants" and I was trying to find the rest of the phrase for her..."something to drink?" No. "To go to the bathroom?" No. "To go for a walk?" No. "To go home?" A look of frustration because YES that's a definite want, but NO that's not THIS want. I rattled through MANY possibilities, and then I stumbled upon: "To watch an episode of Six Feet Under?" And finally Uma gave me the most exasperated "YES" ever in the history of exasperated yeses.

5. So we watched an episode of Six Feet Under. It was the second episode of the first season.

6. It felt so nice to watch Six Feet Under with Uma because this is a show that Uma and I used to watch together when it was originally on, when we lived together. We didn't have HBO so my mom would tape the show for us and then we'd get the tape and sit in our respective bunk beds and quietly cry together because just about every episode would make us cry at least once.

7. And one of the things that I love about watching TV with Uma is that we’re both kind of obsessive when it comes to our TV viewing habits (kind of?) and we know to give each other some space at the end of something like an episode of Six Feet Under. To, like, let the waves of emotion pass.

8. This particular episode that we watched on Saturday naturally made both of us cry. And that felt normal, and nice. Normal isn’t something that we’ve felt a whole lot lately because there’s not much normal about this crazy brain roller coaster that Uma’s been riding. We cried at the very end of the episode--when Brenda tells Nate and David to meet her on a particular bus and then once she has them on the bus she tells them it's the bus that killed their dad.

9. Tears. Gushing. We were babies.

10. Shout out to Sezin, who sent Uma the box set of the entire Six Feet Under series. Such a wonderful gift, and one that will be savored and watched over and over again. Thank you, Sezin. Uma is definitely enjoying it--I believe she's on episode five now. It really helps pass the time in the hospital to be able to transport to the Land of Alan Ball for a while.

11. Oh, and Claire and Ruth both made Uma and I laugh several times. How freaking good are Lauren Ambrose and Frances Conroy? So good.

12. The recreational therapist plays card games with Uma, and Uma gets into them. She loves playing card games anyway, so it's kind of nice that card games are actually THERAPEUTIC. Who knew? On Saturday, she played Solitaire for a while, and then Zack Graham came by for a visit, and Marie and I were both there, and the therapist suggested that we play a game of Crazy 8's so that everyone could play, and Uma was into that idea, so the therapist dealt out the cards and we embarked on an incredibly competitive few games of Crazy 8's. We had fun (except Marie totally cheats) (and I know that when she reads this she is going to get defensive and say that I'M the one who cheats, but she'll be lying) (SHE'S the cheater).

13. There was absolutely no transition between my "Lauren Ambrose and Frances Conroy are so good" comment and my introduction of the recreational therapist. Sloppy blogging.

14. But I realized I’d gone on long enough about Six Feet Under. I mean, come on. Move on.

15. Oh my god. The food. I have to talk about the food they feed Uma at the hospital. So gross. I mean, it's getting better now that she's eating solid foods and no longer stuck with the pureed goo. But still. Uma is going to be so happy when she gets to eat GOOD food again. Food with flavor.

13. The word on the street (from John) is that Uma’s going to be making pizza in her occupational therapy session tomorrow (Friday). That should be fun.

14. But back to what she’s been eating, they give her really bland hospital food, and when she was eating lunch last Saturday there was a piece of bread on her tray and she was about to eat it when she grabbed the sugar packet. She couldn’t open the sugar with just her left hand, so I opened it for her and then she poured all of the sugar on her bread and ate this piece of bread like that. I was totally perplexed because I’ve never seen Uma eat a piece of bread like that and she’s never really been much of a sugar person, but John told me that she used to eat her bread like that in Australia. Apparently it’s an Australian thing. So that’s new to me, and now we just have more proof that Uma has extremely odd eating habits.

15. Speaking of sugar, Marie sent me the following text message a couple of days ago: "I'm in the grocery store and just had a panic moment with I realized easter was over. I am buying fifteen cadbury eggs." A little backstory: when we were in New York, Marie and I discovered that we're both freaks for the cadbury egg. We love the cadbury egg. We would both marry the cadbury egg if it was legal. And then we would eat the cadbury egg, that's how much we love the cadbury egg.

16. So then I text messaged Marie back and asked her to buy me fifteen cadbury eggs as well, because what if they're all gone by the time I get my own lazy ass to the supermarket? That just wouldn't do.

17. I like the image of Marie buying 30 cadbury eggs at the supermarket. I was about to say "it's a really sweet image," but then I realized the pun and decided against saying that.

18. I was talking to Uma and I told her that she was my hero. She gave me the fakest smile ever. I mean, THE FAKEST SMILE EVER. So then I asked her, “you don’t want to be anybody’s hero, do you?” And then she gave me a real smile, a warm smile, the kind of smile you give someone when they really get you, and then she said, very clearly, very firmly: “That’s right.” So I told her, “okay, no worries, I won’t call you my hero anymore, but you’re doing really fucking good and I’m not gonna stop letting you know that.” Maybe she doesn’t want the pressure of being anyone’s “hero” and I totally get that. But she’s a strong mofo and it’s good to remember that, and to remind her of that. She’s going to need that strength as she her road of recovery.

19. I got to be with her while her therapist took her for a walk up stairs again for the first time. And when I say that the therapist “took her,” I don’t mean to imply that the therapist was doing any of the work for Uma, because Uma was definitely doing all of the walking. She walked up and down two flights of stairs and it was awesome. By the time she got back downstairs, she was completely exhausted, but her therapy session wasn’t over. She still had to do exercises in the therapy room, including three sets of ten leg presses. The therapist asked her to count off her leg presses, which Uma did, and while she was doing her second set she got visibly tired…so as she was counting, she went “one, two, three, four, five, six…(pause)…ten.” And then she looked at the therapist as if to say, “you were really paying attention?” And then the therapist said, “nice try” and made Uma finish out the set. But what I loved about that moment was that Uma was being mischievous. She was tired and she was totally trying to trick her therapist into letting her off the hook for a few of those damned leg presses. She wasn’t forgetting the numbers, she was trying to beat the system. And that shows signs of the kind of cognitive thinking and comprehension that we want, that we love, that we need.

20. Please keep praying for Uma and for continued neurological improvements. For her to find her words. She needs her words. All of ‘em. Because she’s good with words. In all of the years that I’ve known Uma, I’ve seen her grow a lot. I think she went through a long period where she didn’t really trust the world and it’s like, in the last few years, she started letting the world back in, trusting it again. And she’s opened up in a lot of ways, and she’s gotten to a place where I think she’s really able to accept love and to give it, fully, in a heart-on-her-sleeves kind of way that’s completely honest and raw and true. So when I pray…which is something that I never used to do, but that I do pretty much all the time now…when I pray (to the universe, to god, to all of the collective energy that we put out there), I think about all of the love that I’ve seen Uma put out there into the universe…and I visualize her being open to all of the love that’s coming back to her right now during this crazy, weird time…and I continue to say the refrain that I started saying back in New York, all of those many, many days ago when Uma was in her coma: “Please let Uma Nithipalan have a full neurological recovery.” I visualize her brain finding new channels, new ways to get those words out…the words that we all know are there, we gotta keep visualizing them coming out. And I pray for her to have strength, and for John to have strength, because we know this road to recovery is going to be long (but there’s a road!) (and we weren’t always sure there was going to be a road!) (and so that’s something to celebrate every single day!)…and I hope and I pray that this will whole experience will make Uma stronger, will solidify the feeling that the world is a good place, a place that we should keep trusting. That even though we’re sometimes thrown these incredible curveballs—that even though her life has taken this crazy detour—all of the energy and goodwill that’s been manifested since that scary day at the end of January, it’s all ultimately good, and we’re all going to be stronger for how we catch that ball and run with it. I don’t know anything about sports, so I probably shouldn’t have tried to use a sports analogy just now, but what I’m trying to say is that, maybe, through all of this, we’ll all become a little bit better at expressing our love. I realize it’s the middle of the night and I’m on a whole lot of caffeine right now, but that’s really the ultimate lesson that I feel like life’s been teaching us lately.

I should go to bed now. I’ll have more Uma updates soon, I promise. In the meantime, here are two very detailed updates from John. (I really wish there was a gay Ballinger, by the way.) (I think maybe I’ve said it before, but it’s kind of a shame, because I really want to marry into the Ballinger family.)

JOHN’S UPDATE FROM APRIL 7

Today is April 7th. 67 days after Uma’s “insult” as
they call it. I’ve been spending virtually all my time
at the rehab place since we arrived back there from
the shunt revision. But today, Erik and Marie are
giving me a much needed break. I’ll be gone from there
about 7 hours and will be cleaning our house and doing
the laundry because on Monday the therpists will drive
Uma home where I’ll meet them and we will look at what
needs to be done or obtained for Uma upon her
permanent return, which will be most likely on April
17th.

Some of the things she is doing now include but are
not limited to:
walking with a cane to the bathroom
walking all the way back from the PT gym with a cane
and a brace and virtually no help from the therapist
eating regular food (her g-tube is out!)
spelling and reading many words
saying some words
looking through her new eyeglasses (“wow” was her
response upon “seeing” again)
beating people at card games
getting extraordinarily frustrated with her speech
problems - this is not really bad - imagine what it
would be like if she wasn’t AWARE that she wasn’t
speaking well? THEN where would she be?

So - she has really come a long way in a short time.
What is coming for her next is, after another week to
ten days of in-patient therapy, going to the same
facility for out-patient rehab AND having this
augmented by our own private efforts which are being
worked on now. She will most likely have her
tracheostomy removed early next week which I’m sure
will make her feel much better about everything. And
we will live at home again soon. Her rehabilitation
will take place for many years in some ways but the
bulk of it, the foundation of it will be done over the
next 4 months to a year. Out idea now is to begin very
intensive speech therapy and physical therapy for her
right arm and leg as soon as possible. The pace she is
going at now is appropriate for her physical health
but she is recovering quickly and soon will be able to
sustain more therapy throughout the day. The problem
is that the county doesn’t provide for that intensive
of a program so, as I said, we will look to augment
this to the extent that she can handle it.

I look around our house and see all the physical
things that make up our life together - the little
things like a receipt for a dinner we had, the new
spice rack she had bought while I was on tour, notes
on the refrigerator, her keys and cell phone,
photographs and things hanging on the walls that she
put up, the new color on the walls in the den that she
picked out and painted, where she left her nightgown
before flying to New York on January 30th......and I
assign great meaning to many of these things as
physical representations of my memories of her and us,
both every-day and specific to events. The memories
occupy and physical and electro-chemical place in my
brain. All arguments to the contrary aside, MY brain
is not damaged, but hers is. And I wonder what she
will remember....will she rememeber the necklace I
gave her? or the one she gave me? or the play she was
in that won her the LA Weekly award? or any lines or
expressions from that play? Will she remember how long
it took her to breathe again after I asked her to
marry me? and so on......

I won’t know this for a very, very long time and yet I
have based my life on relating to my experiences and
relying on my memories to guide me physically,
emotionally, and spiritually. I was talking with my
brother about this last night. Maybe the essence of
things is what I’ll lean on for awhile. Her essence
and personality seem very, very much to be there and
intact. Her sense memory of me and trust in me seems
to be just as present. But exactly where are her
memories? Does it really matter? I don’t know and I
don’t know how I’ll be letting go of this, at least
temporarily, but I will have to let it go along with a
lot of other things, too.

Maybe that’s enough of the diary....there are some
actually funny moments too that I should share.

The other night she seemed very, very upset by
something and I couldn’t tell, nor could she, what it
was. After asking the basics: do you need to go to the
bathroom? does your head hurt? etc. and getting
nowhere she began and kept saying, “YOU WANT IT!
YOU......WANT!” and I’m thinking that she is thinking
about some huge life issue along the lines of - I want
her to live and keep working but SHE is in despair.
Suddenly, she sits bolt upright and points to a pillow
at her feet that I had casually set there a few
minutes before. I said, “You don’t want the PILLOW!?”
and she, exhasperated nods, “YES!” .....so I toss the
pillow across the room and we both laugh. Later I
remembered that she doesn’t like pillows without a
pillow case - this one was case-less.

A few nights ago we were lying in the bed together
watching a dvd and began to look in each other’s eyes.
It was just one of those moments between a couple that
happens all the time but that is the real glue that
binds you together. I asked her, “Are you afraid?” and
she immediately and very forcefully said, “NO!”. The
look on her face was so fiercely clear I actually took
my face a couple of inches further away from hers. I
was startled by how much power there was in what she
said. I guess that’s the second time I got a very
purposeful ‘no’ from her.

Last night was the first time we, she actually, walked
to the bathroom. All I do is very lightly hold the top
of her pants at the back in case she slips or leans
too much. Otherwise she negotiates the whole thing.
This is just going to get better and probably at an
exponential rate for awhile. I’m sending a video of
her walking in the hallway with a physical therapist
to Erik’s blog site.

http://myyearofnewthings.blogspot.com/

Bear in mind that this was captured AFTER she had
already walked about 200 feet. I couldn’t get a good
shot without her looking before that - so in this
video she is already a bit tired. The LAST time she
did this she had to wait two or three times for about
a minute to catch her breath. This time she didn’t
stop.

....so we continue and life has completely changed for
both of us. We may go back to doing many of the things
we did before but on the inside and the way things are
perceived, that seems all different now.

Tomorrow is Easter and Uma will rise up and walk :)

love

John

AND HERE’S JOHN’S UPDATE FROM APRIL 11

hello everyone,

been a while, i know. so much has happened it's hard
to know where to start.

uma had a home visit on monday. she and two of her
therapists met me at our home to go over any changes
that need to be made for her. she walked up the stairs
and came in thru the front door on her own steam. very
nice. it turns out we didn't need to make that many
modifications because she is fairly mobile. Yesterday
my brother wayne and i made all the mods needed. it
took about 6 hours and colleen and sherry watched uma
while he and i worked.

also - yesterday morning dr. pasey took uma's
tracheostomy out. we got to his office - he had never
seen uma before this - and he was talking with her and
her erstwhile speech therapist and equivocating on
whether or not to take it out saying that her voice
sounds too soft etc. i stepped in and talked him into
it. he took it out and was, i'm not kidding you, 6
inches away from her adam'a apple cleaning the opening
and didn't notice a sutuer that was there from new
york which the previous ENT didn't take out. I said,
"wow, there's a suture there." he says, "no there
isn't." i said, "yes, there is." he says, "well, it
would help if i put on my glasses..." then he saw it
and took it out. AGAIN my question is, "what if i had
not been there." answer: she would STILL have her
trach in and STILL have a two month old suture in her
neck. amazing.

i found out on monday that there is most likely a gap
in time for her between in- and out-patient therapy
here. for some reason - back log of patients or
something - she will have to wait at least a month and
possibly two to get into the out-patient program.
so......i'm scrambling around trying to line up
private speech and physical therapists for her in the
interim. it's not easy - there are not a lot of speech
therapy options so far. what i'm truly looking for and
asking for is help with this. erik has done some
online research and given me a lot of names and i am
calling them. if anyone has any experience with this
or knows of any programs or people that could help,
please email me as soon as you can. i would rather
have options open to us than not and i honestly
believe it is medically reckless to start and then
stop this kind of therapy.

she is walking and getting around much better and is
understanding far, far more than anytime since this
happened. but her brain was so hurt, so incredibly
hurt......her right arm is still not responding and
her speech function is very, very slowly returning.
the research i've done indicates that the amount of
healing in these areas she does in the first months
indicate what her long term outlook will be. i would
love to be corrected on this, believe me. and i need
help with this, too.

i'm asking again for your spiritual help for uma. i
really believe she has come this far due to the prayer
and love sent her way by all of you. she needs this
again - just as much as before. please send all that
love to her beautiful mind and beautiful spirit -
specifically for her right arm and her speech. i would
love nothing more than to have the people at our
facility be even more amazed at her progress in the
very short time we have left in in-patient. please
get your sprirt in the place you need for this and
send the love and prayers. i see her covered in
prayer and love - each movement of her little body,
every effort by each therapist, every visit and every
act of help for her (and even me) i view as a prayer,
as a gift of love. you should see her laughing at
something or sleeping so soundly after a long day of
work or even being seriously irritated by yet another
round of vital sign taking. she's incredible. the love
she has received from all of you is incredible. if it
felt good to do it before, feel good again.

last night we were working on word fun durnig
commercial breaks of 'dancing with the stars'. i was
taking her thru 'ring', 'hand', and 'smile'. we said
those words and then i pointed out what they referred
to. this is hard for her......i would hold up her ring
and she would say 'hand' etc. but at one point when
we started over durning a commercial, i held up the
ring and said, 'what is this?' and she says, smooth as
can be, 'it's a ring' not without some incredulity.
that moment of clarity passed and we returned to her
not quite getting the concept. but the work is good
and she does as well or better with me than with her
speech person there. honestly, i think the speech
program there just doesn't add up to the words on the
sign outside the hospital, "state of the art medical
rehabilitation".

this morning after breakfast we were doing her
exercises for bed.....raising her hips, range of
motion on her right arm, etc. these things hurt her
but she does them anyway. she is trying so hard with
all of this.

yesterday i saw her outside with the physical
therapist walking on a slanted grass area that was
very uneven. she did it well.

whenver i talk about going home for some days off,
just cooking together, relaxing and watching dvds or
whatever she just moans and sighs a bit. she really
misses her life. it's been a long time.

anyway - i wish i could get internet in the hospital
room. i have blue tooth on the mac and the cell but
can't seem to get that together yet. any ideas?

i thank you all in advance for all the love you will
be sending to her. it will heal her.

all my love, john

1 comment:

Aimie said...

cadbury eggs look like bird poop. private bird poop in a chocolate human poop looking egg. i shoulda known you'd love them...