amnesiac

i need to apologize.

on an average of once per day, i am greeted by someone's big friendly smile, someone who clearly knows who i am, and who i just can't quite place. some of them have "heard" of me as that girl who dropped out of school last year or something, but most are people who i have actually met. some people are bad with names, but i seem to have serious mental blockage- not just with names but with having met people at all. i feel rude and idiotic each time i shove out my hand with an introductory, "hi! i'm erica!" and they reply, "yeah i know, we met at that party last friday?"

oops.

i know that many of my meds have "interesting" cognitive and emotional side effects including forgetting things, but since most of my mental functioning is back since going off of aspariginase and down on some other chemos, i am surprised by the persistence of the swiss cheese holes in my cranium. i hope i'm being fair and honest blaming my rudeness on my drugs and this isn't just a weakness that i will own for eternity. anyway, if you have been the victim of such a slight by me, please accept my apology!

today, we celebrated memorial day with a backyard bbq at my new casa. it seems that boston does not really believe in spring or fall, but prefers only the extremes of winter and summer. even so, i'm glad that we've entered the hot part of the year. thank you so much to those who came today!

best phone call

On Sunday evening, Uma CALLED me! She was somewhat able to leave me a voicemail. Needless to say, this marks incredible improvement and although the therapy process is slow, it seems to be steady. Here is the latest update from John:

I’ve said recently that my relationship to Uma’s recovery is like watching a snail cross the street and I’m on my hands and knees with my face right downthere near the pavement - just concentrating on the snail and hoping that the doctors have really told us to cross the right street and that a car doesn’t come by and squash us both. Other people come by every so often and remark about how amazing it is that the snail has moved to far to the other side of the street. I look up from the pavement and see just how far and am amazed. But it takes other people’s perspective to help me see what has happened.

Today, like most days, Uma and I walked about a mile in our neighborhood. As of yesterday I began working with her on straightening her right leg at just the right moment in her stride. (Have you ever thought, in minute detail, about what you do when you walk?) It’s easier to access the leg-straightening detail when she walks up our stairs. She plants her right foot on the step, leans forward and pushes up. Before she plants her left foot she must straighten her right leg -essentially standing on one leg for a moment. We did this yesterday after the walk. Today we did it before the walk and so on the walk I would slow us down and bend over while we walked and gently push her right leg back at the right moment - straightening it and causing the foot to roll more naturally. I do this about 20 times. She gets it while I’m helping but not after I stop helping. But the way this recovery goes is just like that.....she gets it with help and she needs ever-so-slightly less help each day. It is enough for gratitude that she gets it with help.

...and then I begin to chant along with her stride, "Monday, Tuesday, Wednesday, Thursday.....” etc. And she chants, in time, with me. She does well in and so I mix it up by telling her to alternate with me. I say, “Monday”, she says, "Tuesday” etc. It cycles around to where we each say each day every other time. (7 days - 2 people). She almost always gets stuck on Wednesday - she jumps from Tuesday to Thursday all the time. So then we just say, "Monday, Tuesday, Wednesday” over and over and then start all over again. She gets better at it every day.

same thing in practicing her writing the alphabet. Singing the alphabet song helps her find the pronunciation for a difficult letter. The first time we did it she would have to begin at the start of the song each time. Now we just back up a few letters before.

Today was the first time she took a shower by herself. I helped her with strategy but she did all the work. She absolutely loved it. She seemed to feel so much better standing up and moving around instead of sitting on the shower chair and having me move the nozzle around and wash her hair etc. for her. She kept saying, “wow!” and smiling. Then there were more strategies for drying.....her back and feet present the most problems but she did it. .....but how to get lotion on her left hand and arm? it’s the only arm that works......I had her put some lotion on her left leg and then rub the back of her left hand and arm on her leg. Big smile. ......so....things like that happen each day.

Tonight Uma helped me cook dinner - stirring the chicken/onion/garlic/pepper whatchmacallit and putting produce back in the frig. We ate. She did the dishes. Yesterday I did a gig and had two friends by turns come by and watch her. They, in effect, are her emergency phone call, if necessary, but the visits end up being so much more than that. In the morning I prepared meals for her that could be microwaved and before I left for the job we walked and did speech and upper body therapy. The days can be so full in this way. My focus is her. Her focus is her.

Two nights ago she went out to dinner with Erik while I went to play a show at a theatre we’ve both performed at several times. I had to go early to set up and sound check and she and Erik came by at showtime. The place was packed and a lot of her friends were there. This kind of event is so mixed for her. It is truly wonderful for her to see all of those beatiful friends and have them so openly and warmly express their love for her. But because she can’t converse with them except to nod or laugh or say, “I’m fine.” is really frustrating for her and she ends up being emotionally overwhelmed. So....as soon as the show is over we sneak out and go home. She’s happy and sad. We’ll take the happy and accept the sad and accept every expression of love offered. For all the people who were at that show and spoke to Uma, thank you so much and please understand where she “is” right now. Take no offense that we left early or that she didn’t say much. She loves you. As of now she walks better than before. Her right arm and hand are still, for all intents, non-functioning but she says that it feels different. The exercises we are doing each day that our home-based physical therapist (a professor at USC) taught us cause Uma’s right tricep and shoulder to stabilize and engage. Uma really feels it in her arm. When she first did this with the PT I saw the therapist’s face light up and avery big smile appeared on her face. .....Uma has trouble with speech, reading, writing, etc. but I have hope. Each day she repeatedly copies the alphabet it gets better. The progress seems glacial when I’ve forgotten that her brain was so severly insulted. When I reflect on her condition the first month after the aneurysm I’m very content with her progress.

Yesterday we were walking home and she stopped and uttered an, “Ah!” while gesturing at the sky, the trees, the sun. We did some charades and guessing and I discovered that she was feeling good about her life despite the injuries. I remarked at how great it isthat we don’t live in a part of the country where it snows or is otherwise cold - imagine having to bundle up and wear boots etc. just to talk a walk - along with a brace and arm sling etc. Sometimes we feel very lucky.

She is on the computer each day looking at emails and her myspace page. She really enjoys this so please send her a note if you can.nithipal@hotmail.com or myspace.com/umanithipalan. If you want to see a really nice picture of her go to myspace.com/johnballinger This is a new life of patience and love. Please think of her mind, her arm, her hand and feel love. Think of yourself and feel love, too, and accept my love and thanks for doing this and for all the previous prayers.I am so grateful.

John

Lordy Lourdes!

Being Catholic is like being a country music fan. You can go away from it for fifteen years and when you go to mass or turn on the radio, they're still playing all the same stuff.

My pilgrimage to Lourdes, France, last week was fascinating in many ways and predictable in many others. One of the most interesting parts was learning about the group that made it possible for my Mom and me to do this, the Order of Malta. The order started in Palestine in the middle ages and took care of the pilgrims who came to Jerusalem. Later, they were called upon for military service and were driven from the holy lands to the island of Rhodes, to the island of Malta, to years of exile, and then finally to Rome. It actually has its own government now, an independent magistracy, bilateral diplomatic relations with 96 countries and is granted the status of Permanent Observer in many international organisations, such as the United Nations. Their members have a tradition of being from royal or chivalrous families in Europe but now the knights and dames (that's what the members are called) are supposedly from all walks of life. [In reality, in the U.S. association that I was with, it seems that lineage may not matter as much, but money doesn't hurt.] Today, the Order does some really great stuff, the least of which is probably bringing all of us malades to Lourdes. They have a special commitment to the poor and to the sick, so they do extensive humanitarian work with the elderly, the disabled, people with AIDS, and especially in disaster situations around the world. I have to say that it was a trip seeing everyone dressed in their Malta regalia all week, like this lady here.

Over the course of the week, I met many wonderful people, both members of the Order and other malades and their companions. As everyone does, each had a unique story of how they came to be a part of the trip and what hopes they harbored for traveling all that way. I met a 4-year-old (who just stole the show) whose family brought him to pray that his tumor never comes back. I met two sweet students studying in Florence who were a refreshing dose of youth and perspective. I met a priest who agreed with me that the Church should be much more open to gays. I met a bishop who worries a great deal about his retirement and likes single malt scotch. I met a man whose mother received water from Lourdes and lived 13 more years after leukemia (back when leukemia was like a death sentence). I met a woman whose every breath is now dedicated to her wheelchair-bound husband who had a stroke two years ago. And on and on and on...

What I actually did there was attend many masses (one with 30,000 people!) and other special services. My feet were actually washed and kissed by priests and I was dunked in frigid holy water by burly Italian women who made me kiss a lipsticked-headed mary statuette-- the bathes were NOT the most spiritual experience. In traveling from the hotel to each of these activities, I was pulled and pushed in a blue cart, along with all of the other malades. This allows the sick person to fully experience the domain and allows the Order to fulfill their duty to serve the sick. At first I thought I'd prefer to walk, but then I got used to the whole service bit and wouldn't mind a permanent cart and puller here in Boston, if anyone is interested. When I move next week, I'll only be one mile from school. tempted, aren't you?

Although I'm not sure that Mary and I got to commune as much as the pilgrimage intends, my bio mama and I spent a precious week together. It's sort of amazing how my family, on my Mom's side, have been Catholic for generations. Apparently my Mom's grandmother was already a Catholic; I'm pretty sure that the missionaries jumped straight off the boats in China and hit my family first. Anyway, my Mom was was super patient and cool about all my questions and commentary on the trip, while still being the steadfast believer and devoted Catholic she always is.

If Mary is to be found in each of our mothers, then I did get to take a holy journey.