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February 14, 2007

Umatine's Day

The latest from Erik.

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 beenin 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,


(Previous updates are here, here, here, here, and here.)

Posted by bonnie at February 14, 2007 8:59 AM

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I did go downstairs and hug both of my parents and tell them I love them.

Oh and I had an idea last night - could you pass it on to Erik? We each find a joke we like, and send it to Erik, who can then read them to Uma (and post them somewhere maybe online?) I have a very funny joke that I think (from the bit I've gleamed from you) Uma would like! And maybe she'd find it a hoot that we were telling her jokes and making each other laugh while thinking of her.

Let me know! Who knows - maybe it'd even be possible to publish (via lulu.com or something) the jokes, and raise money for her hospital costs?

Posted by: Helen at February 15, 2007 12:37 PM

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