Several months ago I was reminded of Dylan Thomas's famous poem "Do not go gentle into that good night" when thinking about Eric's attitude toward the fast-approaching end to his own life. Eric wanted, in fact, to go as gentle as possible; he seemed, in the last few months, to have come to peaceful terms with the awful hand he'd been dealt, and worried more about how hard it would be for us to have to lose him than for him to go. "I'll be gone," he'd say, "I won't have to deal with it." I think we all were inspired by his brave reconciliation to the cessation of his life. He wasn't interested in fighting death for every last second of life, as Thomas urges his dying father to do in his poem; he wanted quality of life or none at all, and hoped, above all, not to live for a prolonged period with the terrible disabilities that the tumor might produce.
The disease doesn't pay much mind to it's victims' wishes, unfortunately; and Eric is now in a place he never wanted to be. His functioning has deteriorated greatly over the last couple of weeks. He has to exert enormous effort to stand up -- his right side is completely numb, and doesn't seem to obey his mind's commands; when I observed to him that it looked as if his limbs felt like they were encased in a suit of armor made of lead he said that this was exactly how it felt to try to move. Walking is precarious and slow, and he uses a wheelchair if he needs to go more than about ten feet. He is often disoriented and has enormous difficulty finding the words he needs to communicate his thoughts, feelings, and needs. The steroids he is taking to lessen the inflammation in his brain give him a ravenous appetite, and he eats an astonishing amount at each meal -- which also means he has put on quite a bit of weight. He may not be interested heeding Thomas's command to "burn and rave at close of day," but the steroids in his body make him perversely hungry for sustenance. They also make him emotionally volatile and quick to anger and frustration, although when friends come to visit he perks up and reverts to his old charming, witty, sly self. His sense of humor is as sharp as ever, and when he's rested he can pull some amazing facts and stories out of his memory.
He is in need, at this point, of company 24/7, to keep him safe and to help him take care of his daily needs. He is still able to do many things on his own, but everything that we all take for granted takes him enormous effort and energy. He spends a good deal of the day sleeping -- we joked when I was just there that he's on a dog's schedule: that is, a day full of power naps punctuated by meals, pee breaks, and "play time" with friends.
It became pretty clear over the last week that the trip to Michigan was not going to be possible in the condition he's currently in, so we will be skyping with him over the weekend so that he can participate virtually in his nephew's coming-of-age ceremony. After the weekend, family will return to SF to be with him. We know we are seeing the dying of the light now, and we'll be at his side, giving what comfort and support we can to help him go as gently as he hoped he would.