Friday, February 16, 2007

Keep your peckers up! / Thursday's Uma Update

Communicatrix used the above quote in an email to me today—it’s something her grandfather used to say—and I think it’s the best damned advice I’ve heard in a long time, especially when talking about Uma, because it’s advice that Uma would (1) love, and (2) totally dispense to others.

So keep your peckers up, people! Uma still needs our hopes and prayers!

I’m sitting in a stairwell writing this because it’s the only place where I can find wireless in the apartment building I’m staying in right now. There’s actually wireless in my room, but it only works when I’m standing on the bed and holding my laptop at chest level (and I swear to you that I’ve moved my laptop around just about every square inch of that room and that one specific spot several feet above the bed is literally the only spot in the entire room with a valid internet connection) and it’s hard to type when you’re standing on a bed and holding your laptop at chest level, so I’m sitting in the stairwell.
Today (Thursday) was a rockstar day. Uma is making progress. Lots of progress. She is not out of the woods yet—we still need to visualize the rest of the blood draining from her brain area, we still want the swelling in her brain to go down, we still want her to start talking, to smile, to laugh, to fully Wake Up!—but she is definitely moving in the right direction.

John and Nithi and I had been saying all day that we felt like Uma was being more responsive than usual—that she was moving more and that she was focusing her eyes more—and then when the doctor brought us out into the hall for the day's update, that's the very first thing he said to us: "she's more responsive today." It's always nice to hear the doctors affirm something you hope and believe (and know). The second thing the doctor said was that Uma isn't following his commands yet (emphasis on the word "yet"). I like to think that she's just being stubborn because she's not the type of woman to really follow any random dude's "commands." I'll have to remember to tell her that Dr. Herschfield is a pretty cool guy.

They haven't done another CAT Scan yet (the next CAT Scan is scheduled for sometime today), but they assume that the edema (I'm not sure if that's how you spell it or not) is the same as it was the previous day ("edema" is the swelling in her brain) (when the doctor first used the word "edema," we were all like, "um, huh?" but we didn't ask him what it meant until he'd used the word about ten times and then we all felt a lot better listening to him talk because we suddenly understood what he was saying), which is to say: swollen but stable and not swelling any more. The fact that the edema isn't getting worse is definitely a good thing. But we want that swelling to fucking go away, so let's keep visualizing the swelling going down and the tissues in that part of her brain reforming and coming back to life. There's a chance that the swollen part of Uma's brain is dead, but since she's young there's also a good chance that the rest of her brain can compensate for a little bit of dead brain. And hey, anything is still possible at this point, so there's also a chance that the swollen part of her brain is still alive and let's keep visualizing THAT too. (Life is filled with possibilities—that's one of the things that I'm really starting to learn from all of this—sure, life can suck and your loved ones can get brain aneurysms and be in comas and all, but nothing is freaking impossible. Uma proves that simple fact every single day.)
It was mostly just the three of us at the hospital—John, Uma's dad Nithi, and me—Jason came by for a while too—and we all got to spend a lot of time alone with Uma. When I was in there with her, we held hands for about thirty minutes. Which is totally something I'm going to make fun of her for when she's all better because she is so not the hand-holding type. At least, not with me. And I think that our thirty-minute hand holding session today might have been the longest amount of time we've ever touched each other in all of the years we've been friends. At one point I asked Uma, "is this okay? Do you want to let go of my hand?" And then she squeezed my hand even tighter. It was a definite response, a definite "no, I do not want to let go of your hand." And her eyes are much more focused today, which is really wonderful. Earlier in the week, when she first started opening her eyes, they didn't really seem to focus on anything, but now you can tell that she's looking at you. Now you can really see Uma there.

Uma's left wrist is restrained to the bed so that she doesn't reach up and pull out any of her tubes and at one point while we were standing there, holding hands, I noticed that Uma was staring at her wrist restraint. And this wasn't an idle stare, this stare was like: "why the fuck am I wearing a wrist restraint???" And so I asked Nancy the nurse (my favorite nurse, the one who yells really loud) if Uma had to wear the restraint and Nancy yelled to Uma: "DO YOU WANT ME TO TAKE IT OFF, UMA!?!?" Uma squeezed my hand tight and I told Nancy that was a yes. So then Nancy yelled out: "OKAY, UMA, BUT ONLY IF YOU PROMISE NOT TO PULL OUT ANY OF YOUR TUBES, OKAY?!?!?" Uma squeezed my hand tight again and I told Nancy, "she promises." So then Nancy loosened the restraint and Uma definitely appeared relieved. She looked tired and I told her it was okay to take a nap if she wanted to because we'd all still be waiting for her when she woke up. Uma closed her eyes for a few minutes, but then she opened them up again—she never closes them for very long because I think she wants to know what's going on around her.

At one point, I saw Uma move her right hand up and over several inches until it was resting on her stomach. This is HUGE. It may sound like a little thing, but I swear to you it is something to celebrate. The right side of her body is the side of her body that was affected by the aneurysm and this was the biggest movement I've seen her right hand make. All of these little big moments give me more and more hope, and they should give you more and more hope too. Uma is feeling all of our love, all of our support, all of our prayers, our visualizations. Our little acts of anarchy and visualization. Our wicked dance moves. They're all reaching her in that hospital bed and they're making her stronger. So let's keep it up!
A couple things you can do today (or tomorrow) (or the next day) to help keep Uma at the forefront of your thoughts:

(1) Share one of your favorite Uma anecdotes in the comments section of http://www.teamuma.blogspot.com/

(2) Go to 2220 Beverly Blvd. in Silverlake, where the fine folks of the Bootleg Theater have started up an Uma Prayer Wall—I think it's the main wall right outside the theater, there's a big green heart in the center of the wall so you shouldn't be able to miss it—and spread some Uma love with your sharpie. Consider it guilt-free vandalism.

Also...

Here's John's email update from today (sorry the formatting is weird, but my cut-and-paste function is getting rid of the formatting in his email and I'm too tired to fix it right now):

everyone,

there has been a different answer today than two daysago. inexplicably, uma has begun opening her eyes andmoving her limbs (even on the right side) more than ihave seen since i saw her at our hotel on jan.31st. when she hears your voice she looks at you. shereaches for the rail of the bed with her left hand.she reaches her left hand up to look at it. she raises her eyebrows. her left leg moves all the time. i sawher right hand (remember, this aneurysm/strokeaffected the left side of her brain which controls theright side of her body) move at least five times today and once, when i was rubbing lotion on her right arm,she very briskly pulled it back from me. she looks very irritated whenever i use the suctiontool to clear her mouth. (how very uma!) and sheroutinely squeezes you hand with her left. the ventriculostomy continues to drain more and moreclearly. it has a yellow tinge to it now (as opposedto red) which indicates the continued breakdown of theexcess blood from the aneurysm. if this doesn't clear up as soon as they'd like, she will be fitted with apermanent shunt which would draw the blood from hercranium to her abdomen. she is much more relaxed and responsive today and herdr. said that he is much more optimistic than he was two days ago. her breathing is even and slow now -she's not fighting it today. when i asked him againabout the angioplasty he said that many blood vesselswere reopened and that, in fact, there is apossibility that the swelling is due to the reinfusion of blood in those areas. tomorrow is the next catscan - this would correspondto about a 72 hour period after the stroke. of coursewe will look very much forward to another 'different' answer then as well. one of the last things i did tonight, after havinglots of time alone with her today (!), was catch thefocus in her eyes and i just smiled so big! you knowwhen you can be looking at someone's eyes but see their whole face, too? and you feel there is someconnection there? that's what i felt and the left sideof her mouth rose up and her eyes crinkled ever soslightly. (this mouth motion differed markedly from the wince i saw yesterday - she was relaxed). wherevershe is in her beautiful but horribly beat up brain, ithink there was a warmth that was given and receivedon a very basic human level. a rehabilitation person came in for the first time today to measure her for a splint for her right armwhich will provide passive resistance to it forawhile. she hasn't been moving it that much and theywant to get started on that. so - yesterday i felt like a ghost. i asked you for your help and i am so grateful for all the emails andcalls i got today. i got help and so did uma. and it'sso nice to give you all some good news. we've all been praying so hard and sending her so much love (strangers email me to tell me they have yelledfor uma to 'wake up!') and i believe its important toreally celebrate the good news. it's a brave thing todo when you think about it because tomorrow could be bad news again. but still.....if you CAN smile, youSHOULD! please have good smile for our girl tonight.she's so brave and is working so hard against this. i want to tell you that i truly think she's on a very long road with all of this, but that she is not alone.we are all with her however long it will be. to thinkthat she is out of danger is not wise right now. toknow, in all of our hearts, that she is doing better is very wise. just before i left tonight i heard thenurse say to the doctor something about herintercranial pressure being up and they began workingon it. we want her swelling and intercranial pressure to have gone downwe want her awareness, her uma-ness to emerge as soonas it can, specifically that she can, very soon,follow a simple command and breathe on her own. we want her to be able to avoid a permanent shunt. we want no more stroke, no more vasospasmwe want no divisiveness against all of the bonds shehas chosen in life. however loudly or boldly you pray for these things,give a prayer of thanks just as loud, becaus this IS the direction we want her to go in. reading your emails and feeling all the love andprayer and support in so many different ways....AND.seeing uma the way she was today has made me feel likea brand new copper-top battery. in some way, i can't wait to see what she'll do tomorrow.
all my love and gratitude,
john

*
Oh, and here are some photos Aaron Case took in the waiting room a couple of days ago (I really need to shave):


That's all for tonight.

xo, hope, and love.

2 comments:

Anonymous said...

rock! this is some good news today! (i'm making punk rock hands.)

i first learned the word 'edema' in reference to the ankles of pregnant ladies. maybe uma's brain is a swollen, pregnant ankle of possibility. or something. okay whatever...uma's brain: if you don't want to be like a pregnant lady's ankle then simmer down and wake up!

my mom likes to say "keep your dauber up." and I'm all, do i have a dauber? keep you peckers up is much more to the point. heh heh.

sending love and light shooting sprouting growing traveling surrounding
lindsay lindsay

Eleanor said...

KEEP YOUR PECKERS UP UMA!