January 23 - January 29, 2000

Sunday, January 23
I had bad dreams that kept waking me up throughout the night. In one, a man whose face I couldn't see was inside my house, loading a gun. I was outside. My house was supposed to be a safe place, but I knew the man inside wanted to kill me. My only choice was to run away, but running away also took me further and further away from the one place I thought was safe. Sara and Bob also showed up in separate dreams. I don't think I've ever seen them both in one night. It was unnerving.

The day featured torrential rain, so our planned hike along the Point Reyes seashore was called off. We had a late and enormous brunch at the Coast Cafe in Bolinas. Don was cheerful but somewhat subdued. I somehow couldn't get into the mood of the moment. When we got back to the cabin, I lay down, but couldn't sleep.

Don came in and lay down beside me He asked me how I was doing. I had to confess I wasn't doing well.

"I feel you haven't been honest with me," I said.

"About what?"

"Well, you told me that you always keep your pipe and your bong in the valise, but I know that isn't true. There's been several times when you thought you'd lost something and I've helped you look for it. I've looked through that valise a couple of times, and I've never seen them there before."

"But I do keep them there," he said.

"And yesterday at the party, after Jnani told me she'd given you the stuff, you acted like you didn't want me to look in your bag. You kept pulling it away from me, like you were trying to hide something from me."

"No, I wasn't," he said. "I left it with you on the couch, didn't I?"

I almost blurted out, "You can't keep hold of an intention for more than thirty seconds," but I thought that would be merely angry and hurtful. Instead, I said, "I just feel like you're trying to deceive or mislead me."

He thought a moment. "One of the things I value most in our relationship is its transparency," he said. "I don't want you to feel there is anything I'm trying to hide from you."

"But that's how I do feel."

"Would you feel better if we took it to the bluffs and threw it into the sea?"

"Yes!"

"Well, then, let's do it," he said, but he didn't stir from the bed.

"How would that make you feel?" I asked.

"I'd be very upset," he said.

"Well, then, that won't work," I said, frustrated. It seemed either he or I would end up upset. God damn that stupid weed. God damn Jnani for once again coming between us.

But he got up off the bed after all and started putting on his shoes. Had he decided to do it after all? I was suddenly very happy.

But one look out the window showed it was not the day to take a walk to the sea bluffs. "Maybe we should just flush it down the toilet," Don said.

"I prefer tossing it into the sea," I said. "More dramatic."

A thunderous downpour seemed to answer that suggestion.

"How about we burn it in the fireplace?" I suggested.

Don agreed, and I started building the fire. About halfway through, I noticed he wasn't helping. I thought, He must have thought I wouldn't really go through with it. But I will. Eventually, he helped with the fire, adding some kindling and stoking it until it was well-established.

He had brought the film cannister I had seen before in the supplements sack with him to the fireplace. When the fire was going well, he opened it and emptied the contents onto one of the logs. Then he got up, went to his other bags, and came back with a second film cannister - small and round, like the other one, but black with a gray top. I hadn't known about this one. He emptied it into the fireplace as well. Then without a word he went into the bedroom and lay down.

I stayed and watched the fire. We had talked earlier in the day about seeing the new James Bond flick at 6:30 this evening, but now that there was a fire in the fireplace, we would have to wait until it had burned out before we could go.

It was a long wait. I crept into bed beside Don for a little while, but he did not respond or open his eyes when I put my arm around him, so I went back into the livingroom.

We left for the movie around eight. It was an hour and a half drive through the rain to the mall in San Rafael, where the movie was. Don did not speak to me the entire time except to give me directions. Nor did he speak to me during the movie, though he could have without disturbing anyone. The theatre was deserted except for one other couple. Ordinarily, this would have been somewhat romantic, but when I put my hand on his knee, he did not respond. I had hoped he would put his hand on mine and we would intertwine our fingers, but I might as well have put my hand on an empty seat.

The drive back was not better: another hour of silence, driving through the dark and cold rain. I remembered driving this route several times, both in daylight and at night, taking Don to his appointments at Kentfield Rehab or returning from a late night vigil at Santa Rosa. This seemed more bleak and hopeless than those trips ever had.

Monday, January 24
I got up early and started fixing breakfast. It wasn't as dreary outside as it had been yesterday, but it was dreary enough inside. Don still wasn't talking to me. I made scrambled eggs and toast and tea and set it out for him. He came out of the bedroom and sat down and started eating. He said, "Thank you," but he didn't look up and wouldn't look me in the face.

This is not the romantic get-away weekend I had in mind. Finally, I asked him if he was angry with me.

"I'm upset," he said. "How many people do I have to atone for?" he asked. "At Kentfield, I wasn't allowed to get out of bed because 'other people' with right brain injuries couldn't be trusted. Now I'm not supposed to have marijuana because Sara used it and Bob used it. Well, I'm not Sara and I'm not Bob."

"And I'm not Kentfield," I said. "When have I ever treated you like that? I've always respected your independence. But this is one thing I can't stand. I've had great empathy for you and your suffering. Why can't you have empathy for me on this?"

"I agreed not to smoke it in the house," he said. "I know you think they can take your house away. I think that's crazy but, yeah, it's your house, so okay. I've been careful not to let you see it."

"It's just that we've worked so hard to get your brain free of drugs. I've spent a year of my life trying to get you back to normal. Are you just going to throw it all away?"

"It's not doing me any harm. I've done it a couple of times. It's one of the things I really enjoy."

"So is that why you're punishing me? Because I wouldn't let you smoke dope?"

"I'm not punishing you."

"You won't talk to me. You won't look at me. You won't touch me. What do you think that feels like?"

He got up from the table and stood beside me. "I'm sorry," he said, "I don't mean..."

But I had lost it. I started crying, holding onto him. "I'm afraid," I said. I could barely get the words out, I was sobbing so hard. "I'm afraid we have so little time." He held me as I clung to him. All my fear and desparation seemed to be coming out at once, and I was glad to let it go. "I'm not as strong as I look," I said when I was able to breathe again. "I may look strong, but it's all an act."

"You don't need to be strong for me," Don said and hugged me close.

We stayed like that for several minutes. I could have stayed in his arms for an hour or more, but my ever-planning mind interrupted. "We have to go soon," I said. We both knew the MRI could not be put off.

We packed the car quickly and then we both double checked the cabin, making sure we left nothing behind. In my last look around the place, I noted a small plastic film canister, black with a gray lid, sitting on the windowsill, framed by the gray sky and the nearly invisible gray ocean beyond it. The day had not changed, but my heart felt a hundred times lighter.


Great news! Dr. Prados looked at the MRIs and said that Don's scans were "dramatically better." Dr. Prados is not a man given to sudden enthusiasms. His use of the word "dramatically" was, in its own way, dramatic.

He pointed out that the principal area of concern from the November scan was now much smaller. The area that was brightly lit was much reduced. He also pointed to an area of the anterior right temporal lobe. That area did not show any enhancement last time, but this time there were diffuse whisps of enhancement. "This little nubbin bears watching," he said. "But on the whole, I would say your case shows dramatic improvement."

Don and I were elated.

We were both surprised when we were told Dr. Prados himself would discuss the MRIs with us. We hadn't had a face-to-face conference with him since September. In October, we received a letter announcing that our case was being handed to Dr. Nicholas. This was a bit of a shock. You'd think they'd at least ask patients if they want their doctors switched. But Dr. McNeil had told us Dr. Prados wanted to devote more time to research. Don asked him if had been able to do so.

"I wish," he said.

Don asked him if there were any new treatments that seemed promising. "Phenyl butyrate, for example," Don said.

"Phenyl butyrate has been disappointing," Dr. Prados said. "However, other differentiating agents seem promising."

"Such as retinoic acid?" asked Don.

"Yes, and compounds like Vitamin A in that family," said Prados.

"So, drink a lot of carrot juice," I quipped.

Prados smiled. "It can't hurt."

Afterwards, we went to the UCSF library, where I found two articles that Dr. Forrester had requested. Don was unable to find them in the stacks until I noticed that they were current issues, which are kept on another floor. After Xeroxing them, we headed for home. All the way down to Mountain View, Don used his cell phone to broadcast the good news.

The weekend had a happy ending after all.

Tuesday, January 25


Wednesday, January 26


Thursday, January 27


Friday, January 28


Saturday, January 29




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© 2000 Louis Flint Ceci / ceci@best.com