A year ago today, we were walking around San Francisco together. I met him at the airport, and he got the biggest grin on his face when he walked out into the waiting area and spotted me. He had a bit of a stiff walk, and he had some trouble going up stairs, but otherwise you couldn't tell there was anything wrong with him until he tried to speak. He couldn't speak much, but if he slowed down enough and there wasn't much ambient noise, you could understand the gist of what he was saying, as long as it was in context. Context helped a lot. If he tried to make some wild, off-the-wall comment, it would just get blank stares. Joking was hard because of the slow timing, but he still had the same sense of humor he'd always had. We met up with a friend of his who lived across the Bay and walked all over Chinatown. Then we took a bus over to the Embarcadero and walked all the way from Pier 37 to Pier 1. We picked up our car and drove to the Golden Gate Bridge and took the obligatory pictures. Then we drove over to Ocean Beach on the west edge of the city and dipped our toes in the Pacific Ocean.
Last summer, we went to Myrtle Beach. All four of us and all five of them, crammed into two adjoining condos in a high rise on Ocean Blvd. He could mostly walk on his own, with the help of two canes or a walker. When we went to "Broadway on the Beach" (the local high-end boardwalk), his wife forced him to ride in a temporary wheelchair that they had brought along. We made frozen margaritas and he and I sat on the balcony of his condo, overlooking the ocean. He could manage his own food and drink, most of the time. He carried a small rag at all times to wipe his chin and his clothes. But he could hold and sip his own margarita if he used both hands. His hands were curled up and he couldn't straighten out his fingers, so he held the glass against the back of his fingers, between his knuckles. He fell down a lot, at least one major fall each day we were there. He couldn't fall like you or I can fall, which is like a controlled crumple. He had no muscle control, so once he started to fall he would just tip over, like a statue, and land wherever he landed. On Thursday night, he fell backwards and hit his head against a corner and we all took a trip to the ER.
Last fall, I visited him at his home outside Philadelphia. We were planning to go see "District 9" in the movie theater. We had stopped at Wawa to get some cash from the ATM when he lost his balance and fell backwards and hit his head. And by "fell," I mean "tipped." We spent the next four hours in the ER. The admitting nurses knew him by name. By this time he couldn't really chew anymore, so he had had a feeding tube implanted into his stomach. I took a giant syringe and filled it with a protein drink and injected it into his stomach. Then I took another two syringes worth of water and injected them too. Then I lost control of the tube and most of it came spilling out with an unexpectedly large amount of force. We plugged it up and got his wife to change his clothes. She told me that another time (not when I was there), he had woken her up in the middle of the night because his tube has come unplugged due to his tossing and turning. Not only were the sheets soaked, but he had to go to the ER again because they were concerned he had lost too much stomach acid.
Last Tuesday he was admitted to the hospital because he was having trouble passing bowel movements. His entire gastrointenstinal system was blocked. None of the thousands of tiny muscles were doing anything close to what they were supposed to. While he was in the hospital, the doctors discovered an ulceration at the base of his feeding tube which had become irritated and was now causing some internal bleeding. I got the call on Thursday and caught the first flight on Friday. On the way in from the airport, Christine told me that he had finally gotten his permanent wheelchair, but I never got the chance to see him ride it. In fact, I never saw him more than 45 degrees upright, and only then when he wanted something to eat or drink. I use the term "eat" loosely. He could not feed himself. He could not chew. He was only allowed to have water ice, pudding, apple juice, and Jello, but Christine smuggled in some cheese bisque from a local restaurant where he had once worked as a waiter. I fed it to him with a spoon, but even that was difficult because his tongue was curled up and he could not straighten it. The trick was to get the spoon past his tongue so he could swallow. Otherwise the food just languished in the front of his mouth until he coughed or spit it out.
The difference between the living and the dying is that the living have the luxury of counting upwards. This is day 365.