Wednesday, February 14, 2007

Uma Valentine's Day!

Before I get to Uma's health update, I just want to say that today is Valentine's Day we gotta embrace this Valentine's Day more freaking hardcore than any Valentine's Day we've ever been through. Because, here's the thing: if you ask Uma what she thinks about V Day, I know she'll say that she hates it—too commercial, too mushy, too red. But that's just what she'll say, and it wouldn't entirely be true. Now, yes, it would be true that she hates candy and chocolates and all the commercial aspects of this holiday, but even though Uma acts like she hates the mushy stuff, I know that she secretly kinda likes it. Okay, loves it. (She'll be mad when she reads this and finds out that I've spilled this secret, but I'm okay with that.) Because, see, the mushy stuff is all about love and it's hard not to like feeling loved.

I'm staying at my Aunt Julie's house here in New York (she's technically my Step-Great-Aunt) and last night we had dinner together and Julie's nine-year-old daughter was making Valentines for all of her classmates (and she made one for Uma too) and Julie mentioned that Valentine's Day is her favorite holiday "because if you strip away the commercialism, it's a day where we honor our loved ones—and without that love, we'd all be dead. It's impossible to live without love. Babies who aren't held, who don't feel love, they don't make it. We literally need love to live." I thought that was a good way to look at this holiday. Forget all the commercialism and just make damned sure that all of your loved ones know how much you love them.

Uma's in a really scary place right now. She's freaking been in a scary place for the last fourteen days, but it got scarier last night. They did a new CAT Scan and found that she did, indeed, have a stroke. As a result of the stroke, there is swelling in her brain. This swelling is bad. This swelling could continue for the next 72 hours and there really isn't anything the doctors can do to stop it. They'll check on the swelling every day with a new CAT Scan, and we have to hope and pray that the swelling stops, that it goes down. If it doesn't go down, if the pressure gets too intense (elevated intracranial pressure), they might have to do a risky procedure wherein they remove a portion of her skull to give the brain room to continue to swell. We don't want this to happen. We want the swelling to stop. We don't want the swelling to continue for 72 hours. If the swelling continues, she could go into a deeper coma. We want the swelling to stop the fuck now.

That's the bad news. The good news, the strange news, the news that the doctors cannot explain, is that Uma continues to improve neurologically. When they lower her sedation levels, she still opens her eyes at the sound of her name. She continues to move a little bit on her right side, responding to sensation. Both of these neurological responses completely contradict the fact that she had a stroke. The doctor said that the stroke should nullify her neurological response level, but it hasn't. If anything, she's getting stronger—neurologically, at least.

That's because she's still freaking in there, fighting this thing. She's not giving up and we can't either. We have to keep the faith, keep hoping, keep praying. We have to visualize even more than we did before. With more focus. Because the Uma we know and love is fucking in there. And even though the CAT Scan results were the results we didn't want, even though her brain is waging a war on her body, we can't let the stroke and the swelling make us feel defeated. Fourteen fucking days ago—the day that Uma had her brain aneurysm—the doctor told us that Uma wouldn't live through the day—and here she is on DAY FREAKING FOURTEEN. She is a fighter and she is the most stubborn person I know. In a good way. Too stubborn to let a stroke get the fuck in her way. So we can't let the stroke get the fuck in our way either. (Sorry for all of the "fucks," but I know Uma wouldn't want me to hold my tongue.) Today is a day where we honor love, so let's keep sending heaps of it to Uma.

More good news, more reason for hope: She hasn't had any new aneurysms. The coil on her aneurysm is still working, it's still holding tight. The spinal fluid in her drain tube is getting clearer and clearer, which means that the blood in her brain is continuing to drain.

More scary news: The doctor said that it looks like the brain tissue in the area where the stroke occurred is dead. But then he said that sometimes young people can recover from that, they can use the rest of their brain to make up the difference. The doctor urged us not to give up hope, and so, if you get nothing else from this email, I want you to get that: DO NOT GIVE UP HOPE. We need to hope harder than ever before. And that message isn't just coming from the doctors:

I was taking a taxi back to Julie's house last night, after we got the news about the stroke, and I made a couple of phone calls—I called my mom, I called Erica, I called Marie—and then I hung up my cell phone and the cab driver looked at me through the rear-view mirror. "Anything can happen," he said. "Don't give up hope, you can't." (I swear that this is an exact quote from the cab driver, I wrote down everything he said as soon as he dropped me off.) He told me a story about his father and how his father had survived two strokes, and "you can't listen to the doctors, they just say what they say. Okay, maybe they know some things, but they don't know everything the body and mind are capable of. Your friend can get through this." I told him Uma's name and he promised to pray for her.

Alright, so: Today is Valentine's Day and I know this is kinda last minute, but let's make today an Uma Valentine's Day:

--Uma's favorite color is green, so if you haven't gotten dressed for the day yet, wear something green instead of the old Valentine's red cliché. The pukier and brighter the green, the better.

--If you've already gotten dressed and you're already out in the world, draw a green heart on your hand. If anyone asks you what the green heart's all about, tell them it's for your friend Uma, tell them you're hopeful, get them thinking about Uma too.

--I know that I gave out this directive sometime last week, and I already kinda said this in the second paragraph up above, but today's all about love, and it's worth repeating, so I'll say it again: call up your loved ones and let them know how much they mean to you. And not just because it's Valentine's Day, but because it's Uma Valentine's Day and you mean it and you want them to know.

--Visualize brain swelling going down. Visualize speech. Visualize memory. Visualize Uma waking the hell up. Visualize her smile. Visualize your love going into her brain and making her stronger.

Thank you,
and love,


Eleanor said...

First. Holding it for Ums.

I keep changing my theory. But, at one point, I did have the theory that I would torture Uma with lots of mushy lovey stuff and that she would have to wake up in order to tell me to stop doing that and to stop holding her hand and to stop saying that I love her, etc.

I don't know if that is the most effective way to do things but I do know that I now have a new faith in your visualization exercises (sounds so new wave). Although I appreciated them before, before she had the stroke I was spending a lot of time thinking about Uma as Uma and trying to will her back into the world as such.

I don't think anyone expected anything to get worse because we know she's a fighter. And then it was, and for me it helps to imagine the swelling stopping and her brain being comfortable (I know that sounds silly, but since I've never seen any brains I just imagine a swollen finger or knee or something, and it always just looks really uncomfortable), and I imagine her blood flowing and her brain coming alive and being relieved to be doing what it's supposed to be doing. I think it helps because it keeps you from thinking about how bad it is, and the bad things that are happening -- it gives you a way to keep putting the positive stuff out there instead of the negative.

Uma has always defied the norm.
And enjoyed it, embraced it.

She is giving a whopping fuck you to any statistics and any setbacks and she needs us to keep the faith.

Ums, we are keeping the faith for you. We will hold you up until you can wake up and do it yourself.

Happy Valentine's Day to everyone.

Eleanor said...

when I said that your visualization exercises sound new wave, i meant new age.

what is new wave? I don't know.

Anonymous said...

This is beautiful, Eleanor.

Yes, love to all on Uma's Valentine's Day.

I had the privilege of watching John interact with Uma in the hospital. Never have I seen such love, such commitment, such faith.

He put his hand on her arm one day and said, very gently, "Uma, wake up. Let's go home."

Let's all bring her home with the power of prayer.


Michal said...

To Uma, with love.
On this national day of love we call Valentines day, let us use this opportunity to send ALL OF OUR COLLECTIVE LOVE in Uma's direction.

Let's make today, I HEART UMA day.

If you're reading this right now, please take a second to leave a comment for Uma on Be it an expression of your love to her, a funny Uma memory, or even just a quick hello.

Many of us have been emailing her little messages and leaving her comments on her myspace page. Lets get all the love concentrated in one place today.

Uma needs us today. She had a rough day yesterday and she needs all the love and support we can give her. Lets make her feel it.

Doug said...

Big Hugs and Kisses, Erik. Listen to your cab driver, he knows what he's talking about!

communicatrix said...

Keeping the faith for Uma over on the home page:

Anonymous said...

"Uma has always defied the norm.
And enjoyed it, embraced it."

Well put Eleanor. Lets go ahead and add new wave to our 'unconventional' healling process. Uma's getting better every day, that's what the neuro tests say, New wave visualization is helping. Put on a little English Beat, and send your vibes to Uma. Rad.


Anonymous said...

Valentine's Day history is so romantic, and you can make your Valentine Day romantic too...just be sincere:) And show your love!

donna said...


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