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April 21, 2007

Uma Update

What follows is a report from Erik about Uma's status (she's HOME), as well as a wonderful article from Erik's step-dad about Uma's journey. For those of you in Los Angeles, we will be dancing for Uma in our Cricket Feet Showcase curtain call on Monday, Tuesday, and Thursday. Even if you're not with us in the audience, please hop up and dance for Uma each night!

Now... here's Erik's latest.

===========

Dear friends,

So, as you know, Uma is finally HOME! Which is so awesome and exciting. And she's starting to get back into normal, everyday, non-hospital things. Like, for instance, last night John charged up her cell phone and told Uma that she's going to be able to start using it soon (because she IS going to be able to start using it soon!) and then Uma noticed that she had a text message, so she eagerly checked it (it was a message from Aimie, sent on the day that Uma had her aneurysm), and then Uma saw that she had voicemail, so she checked those messages too--obviously, people haven't been calling her because she's been in the hospital, so most of the messages were along the lines of "this is your cell phone company and you need to pay your cell phone bill" but it was still pretty cool for her to check messages. She's not quite able to have phone conversations yet, but she's definitely close--I did a "practice" call with her, and she was able to respond to several of my "phone questions." It was exciting.

Anyway, I'm sending out this quick email because:

1. I know that Uma has not checked her email since she had her brain aneurysm.

2. John was talking to Uma about how they should check her email soon, because it seems like an activity she's ready to do.

3. I heard that hotmail deletes accounts if you don't log-on at least once a month, so I've been logging onto Uma's email account about once a week and deleting messages that are obviously spam (she's been getting lots of those "URGENT REQUEST" spam emails, from "bankers" in London who want you to help them cash a check from Africa, or whatever), and so I'm aware of what's waiting for her in her email box when she checks it, and there are about 200 emails in there. I would say that about 20 of them are personal emails from friends, while the vast majority of them are from mailing lists she's on.

4. I was thinking it would be nice for her to have some more REAL emails when she and John finally check her email account...soooo, if you're a friend of Uma and you want to send her a quick "welcome home" email, that would be awesome.

5. Her email address is nithipal AT hotmail.

Thank you!

*

And in case you don't read my blog, here's a recent update that my mom posted:

I JUST GOT THIS UPDATE FROM MY MOM:

How wonderful it is to be able to visit Uma at home instead of in the hospital. I had my first opportunity to hang out with her at home yesterday, and it was very special. Colleen was there when I arrived, and John was in his home music studio working. Colleen left and Uma and I got cozy in the bed to watch a DVD that I had brought--"Ever After." I was in the mood for a fairy tale, and Uma seemed to like the idea, too. So we watched the movie while John worked in the next room, and we took turns dozing since the plot was too familiar to keep us awake when we were both a little sleepy. As we watched, Uma had her right arm in the removable cast that she wears as much as possible as part of her therapy. It can get very uncomfortable for her, so it was great that she was able to keep it on for several hours.

After the movie, we talked--mostly about movies and TV shows, but also about other things. At one point, we talked about "Grey's Anatomy," and I asked her if she was going to watch the new episode that was on last night. She started to explain and couldn't get the words out and appeared very frustrated. John came in and started asking her questions. He has a way of helping her express herself that no one else can match. We figured out that she really wanted to watch Grey's, but also really didn't because she had missed several episodes and didn't want to watch them out of order. At one point in our conversation, she said, "I want to watch..." She often gets stuck after "I want" so it was good to see her forming a sentence.

Another time when I was trying to get her to repeat a sentence, John came in and counted with her to three and then she said it perfectly. The counting gives her time to prepare, and then she does much better. She is best able to form words and sentences when she watches the lips of the person she is talking to. At one point, she said the word "scenario." I wasn't sure what she was trying to say, but it's clear that she's working hard at it and the words are coming to her. They might not be the right words for what she is trying to say, but it is a start.

In response a look of frustration from Uma, John explained to her that he and everyone else can see that she is an intelligent woman and the same person she's always been--that she just needs to work at being able to once again express herself through words. The way he explains this is so loving, so patient, yet also gently demanding. He stops her when she is frustrated and looks into her eyes and offers reassurance that he understands her plight and will be there to help her through--but also reminds her that she has to work at it no matter how frustrated she gets.

Toward the end of my visit, Uma's friend, Lauren, arrived with a tray of cupcakes. I said goodbye to Uma and left feeling rested and grateful for the time I had spent with her. Uma will resume serious therapy next week, and she is getting some much-needed down time during her first week at home. John says they are sleeping well without all the interruptions and noises that invaded their privacy in the hospital. John is trying to get back to work while tending to all of Uma's needs and making arrangements for her therapy. I worry about him because the role of primary caregiver is so exhausting, even when you get back as much love as Uma gives. There is also the tremendous sense of responsibility for so many things, from making sure she eats well and gets the quality of care she needs to making sure the bills get paid. We need to help John keep his strength up so he can help Uma keep her strength up, because no one does that better than John. I think he will ask for help, but probably not as much as he should. He needs quiet time alone with Uma, and he needs time to be away from her to do his work and time to be away and restore himself by doing whatever helps him to re-energize. I say this to direct your prayers and positive thoughts toward the support that John and Uma need to get through this healing process so that she can be fully recuperated in every way. We have already seen what can be accomplished when so many people pull together in love and hope--Uma has come so far with that power behind her, and I know she will keep making progress every day because she is surrounded by so much love and support and is very determined to reclaim her independence.

*

And here's a column my step-dad wrote for The Daily Pilot:

THE BELL CURVE:
Courage and hope despite odds

By JOSEPH N. BELL

My dear friend Uma Nithipalan went home last Tuesday, 77 days after she got on a plane in Los Angeles to fly to New York and join her husband-to-be who was awaiting her there for a brief visit. Twice in those 77 days, the people who love her were told that Uma had only a 20% chance of ever making that trip home alive.

But medical opinion turned out to be no match for the wave of prayer and love that washed over her.

The love came from hundreds, maybe thousands, of friends of Uma who met her and followed her story in the blog of my stepson, Erik Patterson.

This cornucopia of hope and, finally, conviction grew daily, first among Uma's dear friends. But very quickly, they told their friends who told their friends who told other friends, all of whom seemed to find in the courage and determination of these three young people a reason to look--even if only for a few moments--beyond the horrors taking place in our world today to a crusade anchored in the certainty that a reservoir of goodness remains, with the power to bring about results that could be seen as miraculous.

Uma is a native Sri Lankan and a citizen of the world who graduated, with Erik, from Occidental College in Los Angeles eight years ago. Uma was Erik's closest friend then, and she has remained his closest friend ever since. And when Uma fell in love with John Ballinger last year, John became Erik's second-closest friend.

That's the way it was when Uma got on the plane to New York last Jan. 30 to celebrate the engagement ring John had given her at Christmas. John, who is a fine and versatile musician, was playing a gig in Manhattan with the troupe that took "Dancing with the Stars" on the road. It was a job he wanted badly and was enjoying immensely. And it paid him well enough to bring Uma to New York to share it at least briefly.

John was working when Uma arrived at his hotel, but she was waiting in his room when he finished and hurried to her side. And a few hours after that joyous meeting, before the morning light, this wonderfully healthy 27-year-old woman was in convulsions, writhing in pain, gasping for breath.

An ambulance rushed her to the nearest hospital where five precious hours went by before she was diagnosed with a brain aneurysm and transferred to another hospital equipped and staffed to treat her.

Thus started the journey of these three remarkable people.

A few hours after John called him, Erik was on his way to New York. He had joined John at St. Vincent's Hospital when the first desolate news was delivered by the doctor heading the team that treated Uma. She was in an induced coma, he said, critically ill, with, at best, a 20% chance of surviving.

That's when the two men in her life, staggered at first by the news, decided that they simply would not allow it to happen. And from that moment until she went home last Tuesday, one or both of them were constantly at her side. And so were the prayers they pleaded for in the long, poignant emails and blogs they sent daily to the folks back home. Always factually straight. And always upbeat. "Here are the facts," they seemed to say, "but the reality is Uma's full recovery."

That's the way it was through the first three weeks.

One minor setback after another, somehow dealt with.

But always there was the fear of stroke attacking her nearly defenseless body. If only she could get past that, they could all relax a little. And they almost had it made when stroke abused her body once again--and once again the doctors delivered the 20% lifeline of hope. And so the volume was turned up on the call for help, and the response was quick and sure. Uma fought off the grim predictions, resumed her recovery, and a little over a month ago was on her way back to rehab in Los Angeles.

That required a new miracle. Only an air ambulance could deliver her, and that cost more than $20,000. So Erik fired up his blog and told Uma's army the problem--and within four days more than enough money poured in to pay for the air ambulance. So now, after four weeks in a rehab facility, Uma is walking with a cane, communicating with beautiful smiles and nods and grimaces as she relearns speech a word at a time, expressing a range of emotions from frustration to joy, and flashing wonderful glimpses of the old Uma.

It's impossible to convey the almost lyrical flavor of the hope and love and determination in the reports that came from John and Erik every day since Uma was stricken. They could and should be edited into a fine and inspirational book. Here's just a taste from John, written when he went home for the first time in several months, after he and Uma returned to Los Angeles:

"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 bought while I was on tour, notes on the refrigerator, photographs that she put up on the wall, the Christmas tree she hadn't taken down and where she left her nightgown before flying off to New York.

"Her essence and personality seem very much to be there and intact. Her sense memory of me and trust in me seem to be just as present. But exactly where are her memories? Will she remember any lines from the play that won her an award from LA Weekly? Or how long it took her to breathe again after I asked her to marry me? And does it really matter? Maybe the essence of things is what I will lean on for a while.

"Her rehabilitation will take place for many years in some ways, but the bulk and the foundation of it will be done over the next four months to a year. So I'm asking again for your spiritual help for Uma. I really believe she has come this far due to the prayers and love sent her way by all of you. And she needs this again, just as much as before."

I was privileged to be among the people who love Uma and received the daily reports from her bedside.

A few days before she returned home, I visited her at the rehab center and reminded her of an inside joke we shared. And her eyes lighted up and met mine, and her smile was broad and understanding, and I thought of the final sentence in one of John's latest reports: "Tomorrow," he wrote, "is Easter, and Uma will rise up and walk."

*

much love,
Erik

Posted by bonnie at April 21, 2007 5:02 PM

Comments

Posted by: Helen at April 24, 2007 12:59 PM