This is the 13th installment in a series of blog posts chronicling life with my partner, Robert, who died of AIDS March 21, 2002. Read Part 1 here, Part 2 here, Part 3 here, Part 4 here, Part 5 here, Part 6 here, Part 7 here, Part 8 here, Part 9 here, Part 10 here, Part 11 here and Part 12 here.
"I see dead people," the little boy said. The movie wasn't even halfway through when Robert began to nod off. I thought he was starting to fall asleep while in a sitting position, something he often did, and something I always envied about him.
"What's wrong with Uncle Ware?" Darnell asked.
By now, Robert's eyes were halfway closed, and he looked like he was staring at the ceiling. He had that look that people get in their eyes when they're about to lose consciousness. "Oh God," I prayed silently, "please don't let this be another one of those times when something bad is happening to Robert."
"Help me," Robert said faintly.
I told Darnell we would need to leave now and asked him to help me pick up Robert and get him out of his seat. Once we got him out of the theater, the manager found an office chair with wheels, and we were able to get Robert to the car. On the way to the ER, I cursed at myself for not seeing the signs of diabetes: the excessive drinking, the lethargy, the weight loss. He had been doing so well with his new protease inhibitors and the exercise regimen at the Y. For a while he had been gaining weight and muscle mass. Then, slowly, his body and mind began to morph into that of a sick person.
"It's 750!" exclaimed the nurse. "That's unbelievable!" She added, "I spoke to Dr. Bernstein. He's been trying to get Robert in here for some time now. He's diabetic."
Robert had known all along that something was wrong. He chose not to share it with me, because he knew I would nag him into going to a specialist. After some juice and a good meal, Robert was feeling better enough for me to have words with him, so I took the opportunity to lay into him. "What the fuck are you doing with your health?" I asked.
"Excuse me. Aren't I the sick one? Where's your compassion?" he said, looking oh-so-humbled by my cursing.
"Sick, schmick!" I said. "Do you always have to use that as an excuse for me not to pick on you?" I told Robert my patience was wearing thin, and then I asked him why he hadn't followed up on his diabetes diagnosis. He told me he just couldn't see going to the doctor for "every little thing." I didn't respond. My mind was somewhere else. I couldn't understand how this had happened to him. There was no history of diabetes in his family. His diet was healthy. It had to be something else. I started doing some research on the drugs he was taking, all nine of them. One of them had some nasty side effects: numbness of the limbs, acute infection of the sinus cavity, canker sores, diarrhea, throwing up and -- there it was -- diabetes. So Fortovase was the culprit; at least that was my opinion. Dr. Bernstein would only say, "Maybe it was."
After a four-day stay Robert was released from the hospital. Syringe and test strips in hand, we went home and pondered our next move. Money was tight, but I still had some credit cards, which, at that point, I viewed as my savings account. Any money I had put away was gone. Robert hadn't died at the end of six months as hospice had expected. So, after their work was done, he had to reapply for Medicaid benefits. The "spin down," or out-of-pocket expenses, was around $2,000. We hit that amount after one trip to the pharmacy. There he was. AIDS. No insurance. What do we do now?
The best idea we came up with was to take a trip to San Francisco. Robert had never been to California, and I needed a trip back to my home state. By the time we got back to Virginia, maybe Robert would be under the Medicaid umbrella, and we could get back to a new normal. There was some nagging anxiety, though. What if Robert were to get sick? Would the hospital take him in? How were we going to pay for his care? All those questions didn't have to be answered straightaway, though.
Sometimes, a guy just has to do what he thinks is the right thing to do. It's not that I don't believe in being cautious, because I do. However, there are times when you need to put aside the sadness of your situation and try to move forward in life as best as you can. As Robert always said, "Let's just let life unfold and see what we can uncover." So we did.
Meanwhile, there were some crows starting to roost on the utility lines in the side yard at Tootie's house. She was convinced that they were a sign from God. They sat there for several days, watching and waiting.
To be continued...
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