Monday, June 23, 2008

A Short Time to Be There

Last Saturday, June 14th, I dropped Morganne at the airport for her trip to Argentina. I continued on to San Francisco to support my mom during my dad's hospitalization.

My dad was diagnosed with glioblastoma multiforme (the most aggressive kind of brain cancer) 20 months ago. Since then, he and my mom have done an amazing job of continuing to live their lives amidst medical treatments and a dour prognosis.

The prognosis is still dour, but my dad has lived (so far) 8 months longer than expected, even with treatment.

When I got to the hospital, things looked pretty bad. He was in the ICU, struggling to become conscious, and pretty much completely out of it. The right side of his body was paralyzed, and the doctors told me to call my sister and brothers and tell them to hurry if they wanted to see him alive, and conscious, again.

I was doubtful of the "conscious" part of that, myself, but my dad has rallied so many times that my mother and his doctors thought it was possible he might rally again.

Supporting my mother is always a challenge. Just about the time I'm saying, "Don't you want to sit down and rest for a while and read a book or something?" she's thinking that a dinner party would be just the thing. Right after visiting the hospital the first night, I drove her to a dinner party where most everyone spoke French.

The hosts have known me since I was a teenager, and it was pleasant to chat in French with the foreign guests, but the whole thing was a little surreal. My dad is sitting in the hospital, barely there. My daughter is on a plane bound for Buenos Aires. My mom and I are at a Thanksgiving celebration (really!) in June practicing our French.

I did get the (now familiar) thrill of watching someone faint when he learned I have a 19-year-old daughter.

The surreality continued. We spend about half our days at the hospital, watching my dad struggle. We spend the other half of the day socializing. My mom's giving me fashion advice, loaning me jewelry, and encouraging me to take special care with my appearance. I've never loved my family role as show daughter, but I submitted to it more willingly than usual.

I was also my mom's designated driver. As I wove my way uncertainly through the city, my mom encouraged me to drive more aggressively. "Go go go!" she'd exhort, "you've got to speed up or we'll be stuck at that light for 10 minutes. Hit your horn to tell that guy to get out of your way." Her language was a lot more colorful , though, and her road rage a lot more emphatic.

Okay, I thought, she's incredibly stressed right now, and she always drives like a bat out of hell anyway. And despite driving like a bat out of hell, she has an excellent driving record.

So we're very different, my mom and me. I like silence, solitude, serenity, and a slow pace. She's an extreme extravert and an adrenaline junkie.

I had my brief for this week: to support her the way she needs to be supported. Not the way I would need to be supported, but the way she needs to be supported. This required constant adjustment on my part, because my first impulse was almost always dead wrong.

So I went to brunches and dinner parties and ran errands that (in my opinion) didn't need to be run. I cooked and drove and tried to maintain my serenity. I met with an endless bevy of family friends, cousins, aunts, uncles, and, of course, my grandmother.

One night when we were driving home from a dinner party at a Thai restaurant, I told my mom, "I like all these people. I just find them overwhelming in such large, loud bunches."

The large, loud bunches energize her. I don't understand how this works. I don't need to understand how this works. I just need to accept that it does.

Meanwhile, the hospital visits continued to be agonizing. My dad was in a constant struggle for consciousness, almost getting there and then slipping below the waves again. He was in restraints, because he kept pulling his tubes out. He had frequent seizures and involuntary muscle movement on his right side because of misfiring neurons.

Also meanwhile, Morganne got to Argentina and started posting frequent updates to her trip blog. If I hadn't been so absorbed by my parents, I would have been a basket case with her going so far away. As it was, my basket-case-ness came from quite a different source.

And also also meanwhile, Garry celebrated his birthday with the three younger children. Morganne was in Buenos Aires and I was in San Francisco.

When my mother wasn't busy in other ways, she was on her cell phone. On Tuesday morning, I decided to confiscate it for the afternoon. I told her she could have it if she really wanted it, but that I'd make all her phone calls for her and answer it so she could have a break. By that time, even she was totally frazzled, so she agreed.

My sister arrived late Tuesday night, which was a relief.

On Wednesday, my dad was a little more aware. His seizures were under control, and he could focus his eyes for periods of
up to a minute or so. My sister and I spent the afternoon together at the hospital while my mom went to work (she's a therapist, and she still works Wednesdays and Fridays). We each gave the other one an hour or so alone with our dad.

During my hour, I just sat with him like you'd sit with a baby. I'd been wanting to do that, but my mother and other visitors
kept up a steady stream of chat. I sat, made eye contact when he'd let me, cried some, prayed lots, and spoke when he spoke.

He didn't speak much, and only in fragments. "Unnatural," he said, and I had to agree that the whole hospital thing was
unnatural. "Facts don't matter," he told me emphatically, probably because his doctor and my mom are constantly asking
him about irrelevant details like what year it is. (The year, in case you were wondering, is January.)

Science, he said at one point, isn't important. This was quite a shift from the person I've always known.

Finally, after an extended period of eye contact, he said "I don't like to be rushed."

So he's not going to be. He's taking his time about dying, and he's welcome to it.

My dad's always been pragmatic and a problem-solver. He was a programmer. When I was 13 or 14 and struggling with some word problems, he told me that he solved word problems for a living. He then sat me down and showed me exactly how you go about solving any word problem you run across. He was methodical and precise.

He never wasted energy wishing things are different than they are. When some crisis appeared, my mom would get all het up, go into what-ifs and it's-not-fairs and rail against the situation they found themselves in. He had no time for any of that.

"Here's the situation," he'd say, laying out the bare facts, "and here's what we need to do about it."

He's still doing that, I realized, watching him struggle with the smoking wreckage of his brain. He's still figuring out what he has to work with, what his givens are, laying aside the hypotheticals, and trying to solve the problem he's been given.

Maybe that's why he's lived so long, and how he's managed to regain function that the doctors believed he'd lost. All along, he's problem-solved around his limitations, and I could still see him doing it. He might lack memory and motor control and even the ability to stay conscious, but he'll continue to use what he has as long as he can.

No matter how out of it he was, he'd struggle to kiss us good-bye and tell us he loved us. Even if all he could do was move his lip a little and grunt, he did it.

I left San Francisco on Thursday.

Saturday was Merlin's (Remus John's) 9th birthday. We have a new rat in the family, the Rat of Khan. We celebrated at the pool with lots of friends, watermelon, and ice cream. It was lovely and hot, and the day in the sun was refreshing.

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