The Island of the Colorblind

The next morning John and Phil picked me up early. ‘You saw a little of the parkinsonism and dementia – the bodig – yesterday,’ he said. ‘Kurland felt this form of the disease was replacing ALS in the 1970s – but you must not imagine the ALS is extinct. I have lytico patients I have been following for years, and new cases as well – we’ll see some today.’ He paused, and added, ‘There is something unbearable about ALS; I’m sure you have felt it, Oliver – every neurologist does. To see the strength go and the muscles wasting, people unable to move their mouths to speak, people who choke to death because they can’t swallow…to see all this and feel you can do nothing, absolutely nothing, to help them. Sometimes it seems especially horrible because their minds remain absolutely clear until the end – they know what is happening to them.’

We were on our way to see Tomasa, whom John has known ever since he came to Guam. She had already had lytico for fifteen years when he met her; it has advanced steadily since, paralyzing not only her limbs but the muscles of breathing, speech, and swallowing. She is now near the end, but has continued to bear it with fortitude, to tolerate a nasogastric tube, frequent choking and aspiration, total dependence, with a calm, unfright-ened fatalism. Indeed a fatality hangs over her entire family – her father suffered from lytico, as did two of her sisters, while two of her brothers have parkinsonism and dementia. Out of eight children in her generation, five have been afflicted by the lytico-bodig.

When we entered her room, Tomasa looked wasted, paralyzed, but alert. With a cheery ‘Hello, Tomasa, how is everything today?’ John walked over to the couch where she was lying. He leaned over and touched her shoulder, and she followed his hand with her eyes, which were bright and attentive. She followed everything, with an occasional (perhaps sometimes reflexive, pseudobulbar) smile, and a slight groaning as she exhaled. She was dying in full consciousness, after twenty-five years of an implacable disease, in a bright sunlit room. John introduced me to Tomasa and to her daugher, Angie, who was with her. When I asked her date of birth, Tomasa produced a string of (to me) unintelligible sounds, but her daughter interpreted this as April 12, 1933. Tomasa could open her mouth on request, and put out her tongue. It was fearfully wasted, fissured, fasciculating, like a bag of worms. She made another unintelligible sound. ‘She wants me to bring you and Dr. Steele something to drink,’ Angie said. Tomasa’s manners have not deserted her, even at this point. ‘She has taught countless people about the disease on Guam,’ said John; Tomasa smiled. ‘Don’t worry, Tomasa – Angie will not get the lytico. No one in the younger generation gets this, thank God,’ he added softly.

Family, friends, neighbors, come in at all hours, read the papers to her, tell her the news, give her all the local gossip. At Christmas, the Christmas tree is put by her couch; if there are local fiestas or picnics, people gather in her room. She may scarcely be able to move or speak, but she is still, in their eyes, a total person, still part of the family and community. She will remain at home, in the bosom of her family and community, in total consciousness and dignity and personhood, up to the day of her death, a death which cannot, now, be too far off.

Seeing Tomasa surrounded by her large family made me think of a 1602 description of the Chamorros by an early missionary, Fray Juan Pobre, which I had seen while browsing in John’s office:

They are naturally very compassionate people… The day when the master of the house, or his wife, or a child falls ill, all the relatives in the village will take dinner and supper to them, which will be prepared from the best food they have in the house. This is continued until the patient dies or recovers.